Chain Reaction

New Anti-Inflammatory Agents Silence Overactive Immune System

2011-08-29T05:57:00.003-05:00

The discovery of a new way to fight inflammation offers a promising new approach to treat inflammatory autoimmune disorders such as lupus and multiple sclerosis, which are marked by an overactive immune response. Read HERE

Can You Pass The Salt?

2011-07-15T00:11:00.003-05:00

1. Bladder Spasms started today. Thank God for Vesicare (can't you just hear the commercial now?!...Come on I know you can...telling you in a smooth, sweet, soft voice how they are going to help you with overactive bladder...well get to it!).

2. Had a Massage Tuesday Started having MS Hug Symptoms Wed and Thurs. No more Massages..who cares if they can release the toxins in my body to help me get rid of them. Apparently they do better bottled up in my joints and spine than released into the depths of my body.

3. BP was a perfect 120/84 at Family doc today...so when I asked if I am craving Salt because of my BP meds she JUMPS up and yells out to please get me a blood draw to check my electrolytes. In short, no you don't crave salt because of them but apparently they can screw with your electrolytes to make you want salt so you don't pee it all out...which works SO well with Overactive bladder when u pee every 1-2 hours. She never did tell me what to do about it but told me I could have salt and stay off my 1 BP Pill a diuretic until my bladder calms down...at most 2 days. WOW...2 WHOLE DAYS and eat all the Salt I want? I will be bloated by sundown.

4. I was full and bloated by sundown. Took BP...High...155/105...back on pills uh...NOW.

5. Insomnia for several days now...from what I have NO IDEA. I just want to sleep during normal business sleeping hours. Not during the day ... which just leads to me having Insomnia at night!

6. I'm not sure if Hell is anything as Hot as TN is in the Summer, but, if so I feel really sorry for those poor bastards! Right now I want to move to Iceland...it appears my optimum feel good temp is less than 95+ degrees...who knew?!

7. I'm BORED...with a capital B. But when one day you feel satisfactory and the next you feel like you lost the BIG FIGHT with Muhammad Ali you're kinda screwed to try to plan anything. I hate that most about MS.

8. A young man (27) my husband works with was told he may have MS. What does my husband do...immediately tell him about ME. Uh DUH...didn't we have this conversation like 20 times...you do not tell anyone at work that I have MS it could affect your future with the company negatively...oh wait...he promised not to tell a soul...the same guy who ran into work to tell you he went blind in one eye last week and they think he has MS???? And then ran to talk to all the Nurses at work (Because we know that if you have RN behind your name then you are qualified to advise on MS)...yeah that secret will get kept.

---- Rant over for now....stay cool peeps...it's HOT HOT HOT out there...at least my body is telling me it is!

Heat, Fatigue & MS

2011-06-07T14:10:00.003-05:00

I've decided to post about how Heat affects some of us with MS. As I've had to spend the last 2.5 days without AC in 90 degree temps.

What the MS Society Website tells us is "Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid or they run a fever, sunbathe, get overheated from exercise, or take very hot showers or baths. For example, some people notice that their vision becomes blurred when they get overheated—a phenomenon known as Uhthoff's sign. These temporary changes can result from even a very slight elevation in core body temperature (one-quarter to one-half of a degree) because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses."

For me and many others Heat = Exhaustion or Fatigue. I find this the most debilitating symptom for myself during the summer months. The Heat also increases my spasticity during the summer. Here's the kicker for me...I'm not even outside and it's like my body knows it's hot out there and Exhaustion sets in. This is what does not make sense to me.

Fatigue is one of the most common symptoms in 80% of people who have MS. For those who don't have MS I describe it as it's not like you've worked all day and your drained and tired. It's like you've slept all night and you wake up exhausted like you haven't slept for days. I've learned Fatigue and Tired are two very different words. My fatigue lately has me contemplating moving to Alaska. Frustrating because as I am in a 70 degree house and comfortable my body knows it's in the 90's out there and it doesn't want to move. Sleep is the key word during my summers. Upsetting because I used to love summer.

Heat I've found most affects existing symptoms or ones you had in the past and they come back because of the heat. Lately my vision has been blurry in my left eye because of my Optic Neuritis history. My leg muscles are tight due to spasticity, my balance is off and the big one I'm Fatigued or Exhausted frequently. What's a girl to do. Some days I press on, but some days I can't. It's a fine balance.

So if you are struggling with the Heat this summer I understand. A few things that HELP me are taking showers in Tepid water, sometimes even Cold. I LOVE my Arctic Neck Wrap! It lasts for hours and covers the carotid arteries just perfect to cool you down fast. I wear it in public all the time, who cares, just looks like a neck brace. I hear the misting fans are good as well. And of course drink lots of COLD fluids!

How do you deal with your MS and stay cool during the summer?

Become an MS Support Group Leader? Me?

2011-05-24T03:23:00.004-05:00

I'm a natural born leader. I know this about myself. Every job I've ever had they always asked me within a short amount of time to lead or be in Management. So after my Nashville MS Walk Team raised the most money of all the Mid-South Teams by Double what everyone else did I was elated and also knew they would ask me to do it again next year.

What I wasn't planning on was to be asked to be a Leader for the Nashville MS Support Group starting next September. I have mixed feelings about this request. I am honored they would ask me to do so. It would give me something to do since I am not working and allow me to network with Many local MS Physicians, Nurses, Drug Reps and fellow MSers.

The big question I feel stuck on is do I want to have to be responsible for bringing good topics to the table, setting up speakers, organizing food donations (lunches) from Pharma Companies, Scheduling the Meetings and then field emails to/from 200+ people every month from September to May? Sounds like allot of work when right now I'm not 100% yet.

At the same time I am bored to death at home but would rather do something that would bring in some income until my SSDI is approved. I'm also not sure I want to put that much focus on MS. The current volunteer leader is always at the MS Society doing something. I don't want to think about my MS all the time. I don't.

And I'm unsure about working WITH the local chapter of the National MS Society. I would need to know their expectations. Has anyone done this before? I'm trying to weigh this from every angle so please give me your thoughts/input. Those of you who are greatly involved in the MS Community do you ever just want to forget about it or do you find it rewarding and beneficial?

What are your thoughts or insights?

Could the cure to MS be as easy as Chelation?

2011-05-16T23:03:00.003-05:00

Read this local newscaster's story regarding her fight against MS. There are 3 parts make sure you watch them all. Have any of you taken any of the steps she is taking in her treatment?

Read Story HERE

Scripps Research Scientists Develop Compound That Effectively Halts Progression of Multiple Sclerosis

2011-04-22T21:43:00.001-05:00

The Discovery Also Holds Promise for Other Autoimmune Disorders

JUPITER, Fla., April 18, 2011 /PRNewswire/ -- Scientists from the Florida campus of The Scripps Research Institute have developed the first of a new class of highly selective compounds that effectively suppresses the severity of multiple sclerosis in animal models. The new compound could provide new and potentially more effective therapeutic approaches to multiple sclerosis and other autoimmune diseases that affect patients worldwide.

The study appeared April 17, 2011, in an advance online edition of the journal Nature.

Current treatments for autoimmunity suppress the patient's entire immune system, leaving patients vulnerable to a range of adverse side effects. Because the new compound, known as SR1001, only blocks the actions of a specific cell type playing a significant role in autoimmunity, it appears to avoid many of the widespread side effects of current therapies.

"This is a novel drug that works effectively in animal models with few side effects," said Tom Burris, Ph.D., a professor in the Department of Molecular Therapeutics at Scripps Florida who led the study, which was a multidisciplinary collaboration with scientists including Patrick Griffin, William Roush, and Ted Kamenecka of Scripps Research, and Paul Drew of the University of Arkansas for Medical Sciences. "We have been involved in several discussions with both pharmaceutical and biotechnology firms who are very interested in developing it further."

Read the whole article here

JC Virus Test Positive

2011-04-19T20:39:00.003-05:00

Today I got the test results for my JC Virus Test...it was positive. So I've only had 1 Tysabri infusion and I know that going into the Tysabri treatment I already am more supseptible to PML. This leaves me with many more questions regarding my future MS Treatment. I'm open to opinions & suggestions.

Also, I've been having what I am calling "episodes" of Pain/Numbness which always starts on the side of my head and goes down my neck/shoulder and left arm/hand until I can't move my left arm/hand and it's constant pins/needles and pain for up to 1 hour. I've increased my Neurontin and I'm trying to rest more.

I'm also experiencing buzzing from even just walking say 1/2 mile. The buzzing could be anywhere in my body. Legs, Torso etc.

My Neuro wants me to do IVSM again (I just had it in Feb) and I'm not sure if I should since I have the JC Virus + Steroids + Tysabri = No immune system! And shouldn't we limit the amount and how often we receive IVSM? Do I not do it and deal with the symptoms and hope Tysabri helps them subside? I welcome opinions here as well...

I hope everyone else is doing well.

Mid South Marchers

2011-04-08T06:48:00.007-05:00

This weekend I will lead the Mid South Marchers in the MS Walk. Only thing is I won't actually be walking but I have 8 people walking for me! :) As the Team Captain I need to organize everyone so we can get our team picture taken and hang at our tent etc. Out of our 10K goal, so far we raised 6700+ online! I have no idea what funds will be brought in tomorrow regarding cash and checks! We are currently #1 in the Nashville area! But we also have till May 31st to get all our monies in so I am hoping we meet our 10k goal.

In other news, my sister Mary is visiting and walking for me, she's raised 1200+ on her own so I need to give Kudos to her! I will meet about 500 of my 1K goal. But that's still good. :)

I'm starting to get used to what I call "spells"...I'll be walking along and all of a sudden my entire left side from my head down my neck down my arm to my hand gets painful, pins/needles and numb for about 10 minutes. It still freaks me out when it happens (1x a day) because I never know when it's coming. I assume it's MS because my doctors office is ignoring my calls and emails. I need to find a caring Neurologist or Nurse...Do they exist?

Tysabri Infusion #1 + the Stress of my sister visiting, MS walk and next week flying to my niece's baptism has left me full of anxiety and now I have a cold sore - which only happens when my immune system is low and I'm stressed to the rafters. I just want it to be Easter and I'm sitting at home bored again. lol

So, I am trying to stay positive even though I feel like I'm on the brink of a nervous breakdown these days with so much to do and so little time to do what I really need which is REST. This is not a rant, just an update per Libby's request! :)

I hope this finds you all well and ready for spring up North I hear nothing has even begun to bloom yet...we are enjoying the 70's down here and everything has been blooming for weeks. :)

Last weekend my husband, father in-law and 20 Year old Nephew put a Paver Patio in our backyard and reseeded the entire lawn...so hopefully in a few weeks we will have a great green backyard and can enjoy our fire pit on our new Patio!

I did have some excitement this past week when a Tornado came through and I "heard the train a coming" when they get close they really do whistle like a train. The dogs and I went into the closet on the lowest level of our house (we don't have a basement like is common up north) and sat in the dark praying. Luckily God heard my very loud prayers and we were spared. Not everyone in Nashville was so lucky. It's the one thing I dislike about living here (that and the 90-100 degree humid summers) other wise I would love it. I do live in the happiest state in the union they say! Read THIS

Have a great weekend!

My Brain Looks Like a Christmas Tree

2011-03-31T13:30:00.004-05:00

Monday I had my first Tysabri Infusion. It went fine, no side effects afterwards. Though they did have to give me Ativan and Xanax to stop Anxiety. And I told them to just start it and not tell me...lol

I had the JC Virus Blood Test before my first infusion and that will take 4-6 weeks to come back and they will email me the results. So I am now hoping this drug works for me, I've met people it worked miracles for and also people it did nothing for. I need a miracle! Way to many symptoms and new lesions my brain is lighting up like a Christmas tree in addition to the new cervical spine lesions I have at C2 and C5 THROUGH C7 - that just can't be good - they found one in my brain stem as well. I am NOT happy. But those of you who read this can all relate. So no pity party here, just frustration.

---------------------------------------

So have any of you ever had these symptoms (new to me):

You are laying in bed say on your side and you flex your feet to stretch and a buzzing just goes through your body. Same buzzing happens if I awake, laying on my side and I lift my arm up to stretch it out. I'm not moving my neck mind you JUST my limbs.

This one is really bothersome: I could be doing anything, walking into a restaurant (like the other day) and all of a sudden my entire left side - Head, Neck, Shoulder, arm, hand just gets the weird buzzing sensation and goes completely numb. I dropped my purse. Luckily hubs was there to hold on to, this one really freaks me out because it feels like I have a blood clot or something traveling...I don't (I was checked at the ER for it). Lasts for 5-10 min and passes. But comes out of nowhere, I'm trying to keep track if I'm moving my head a certain way or something.

Of course there is the Buzzing down my entire body/spine when I look down and even sometimes left or right in any capacity.

That round of IV Steroids 6 weeks ago did not last very long. I'm back to where I was and SO Fatigued it's nuts! And they tell me it will take 3-6 infusions of Tysabri (3-6 months) until I notice a difference? My husband will divorce me by then if he has to do all he is doing now. Ugh.

On the Plus side my MS Walk Team the Mid South Marchers has raised over 5K toward our 10K goal. Being team captain is challenging for 37 walkers. But Fun when you can't leave your couch very often! :)

So let me know if you've had any of the above symptoms and what helped you to heal them?

Monday, March 28, 2011 - First Tysabri Infusion

2011-03-28T00:00:00.001-05:00

Today I will have my first Tysabri infusion. I'm nervous as I expect most newbie's to this drug are going to be. I'm especially nervous after an ER visit last Thursday that kinda gave me the final "You need to do this" moment regarding my questioning Tysabri. More New & Active Lesions in my Brain and Brainstem. Causing the WEIRDEST symptoms I've been told are from MS ever. I'll detail those in another post.

So if you look at the clock around 2pm CDT think of me and send me a little wish or prayer for luck! :)

Cold Feet

2011-03-13T23:41:00.002-05:00

No I'm not talking about Wedding Day Jitters. I'm already married. I'm talking about cold feet feeling due to Neuropathy. Anyone else have this? One of your extremities feels cold you, maybe not to your touch but sitting under a blanket with socks on your feet feel cold. Finally, it dawns on you that's not cold it's pain. Nerve pain.

The odd symptoms we have with MS. I don't like my body being warm or even hot to the touch but I feel cold. Tell me about your experiences with Neuropathy or similar symptoms.

Statins & MS

2011-02-23T00:26:00.006-06:00

If you had the ability to take a Statin medication such as Lipitor to help slow your MS progression would you? I have slightly high cholesterol and if there is a drug that can help that issue AND slow the progression of my MS why wouldn't I do it?

i plan to find out tomorrow if i can. The article below is almost 1 year old but raises some interesting questions. I'll you know what my doctor says.

======================================

From Drugwatch.com

Lipitor and other Cholesterol Drugs May Help Treat Multiple Sclerosis
April 16, 2010, 02:04 pm

Popular medications used to treat high cholesterol such as Lipitor may slow the course of multiple sclerosis (MS), according to a new study presented at the annual meeting of the American Academy of Neurology.

Over the course of a year, researchers studied 81 patients with early-stage MS, an autoimmune disease of the central nervous system that can inhibit the ability to walk and engage in other everyday activities. Patients in the study were chosen at random to receive either 80 mg of Lipitor (atorvastatin) a day or a placebo.

At the conclusion of the study, over more than half of the patients receiving Lipitor experienced no new MS brain lesions, whereas less than 30 percent of patients receiving placebo experienced the same.

Lipitor is a widely used medication that belongs to a group of drugs known as statins. The medication is used to treat patients with high cholesterol by inhibiting the production of cholesterol in the liver and reducing cholesterol levels in the bloodstream.

The new study, however, carries implications for the future potential of statin medications such as Lipitor in the treatment of MS.

MS usually develops between the ages of 20 and 40. An estimated 2.5 million individuals are living with MS worldwide, and the disease is currently the most commonly diagnosed neurological disorder among young adults.

While medications such as Ampyra can help alleviate the symptoms of MS, there is currently no cure for the disease. Experts in the field have called for larger follow up studies addressing the potential benefits of statin medications for MS patients.

Additional information about drugs and drug side effects may be found on DrugWatch.com.

Also....

Science Daily Article

Web MD Article

Exciting Times - I'm a Team Captain!!!

2011-02-13T18:06:00.002-06:00

EXCITING TIMES!!! I am a MS Walk Team Captain For Tennessee Mid-South Chapter! I Volunteered at the MS Support Group Meeting we had on Saturday. It's a great thing. I need something to keep me busy since I am not currently working and even though I am currently going through a flare up (a pretty bad one at that) I need something to occupy my mind!

I'm thinking of fund raising ideas and such right now! I will be working with the MS Society directly and trying to get the word out there so if any of you have ever been a team captain before by all means feel free to fill me in! :)

Our goal is to raise 504K. Uh...wow! I will have to become a fund raising queen by the end of this! But I love a Challenge.

Feel free to leave ideas in the Comments Section!

Tysabri it is...

2011-02-05T22:56:00.003-06:00

Going to be starting Tysabri in a few weeks....also starting the Swank Diet on my own soon as well. Already doing a low fat diet, going to see if I can handle the Swank Diet.

I also hope to start interviewing and talking to others with MS soon to get a better handle on what I think is the best way to battle this disease. I want a clearer picture. I am kinda in agreement that the root cause may be Vascular or at the very least it is a component.

I'll let ya know if I find anything interesting. Feel free to let me know in the Comments section if you would be open to speaking with me and answering some questions at some point regarding your own history of MS.

Ta Ta for now!

NO MS HUGS NEEDED!

2011-02-03T00:33:00.003-06:00

I have been experiencing for the past month what can only be described as a MS HUG. My entire left torso from my hip to my shoulder feels tight, constricted and numb. When I eat it gets worse, when I walk it gets worse, the later in the day it gets worse. Basically unless I am laying down doing nothing...it gets worse. And what kind of life is that...

After almost 8 years since my diagnosis (2/24/03) I've experienced many symptoms, but, none like this. None that made me describe the left side of my body as stone. None that made it hard to breath sometimes because of how tight the muscles were and how constricted I felt. None that prevented my husband from touching my shoulder on that side because I would go through the roof in pins/needs pain.

Along with this wonderful constricted sensation the rest of my left side of the body is numb. To varying degrees. In the morning, I can awake and feel my left arm and leg...by the night I cannot. It's the oddest and most uncomfortable sensation ever. I don't care for it.

To top it off, if I wanted to stretch those tight muscles I cannot because I have L'Hermitte's sign which just sends a buzzing sensation down my spine and through my body. It's not pleseant.

Long story short...All these new symptoms started on 12/31/10...guess what I got for the new year...aren't I lucky....NOT. I go back to the Neuro tomorrow to discuss a further plan of action. If he doesn't give me what I want including physical therapy I am seeking a new Neuro. Something's gotta give. I'm not ready to have all these physical limitations yet! Not that I ever would be, but, I'm not even 40 yet!

I'm open to all suggestions for symptom relief if you have any please let me know!

Thankful Thursday

2011-01-27T00:22:00.002-06:00

I am Thankful for:

I went to the Circus for the first time in my life last weekend - see pics -

A husband who loves me

My 2 puppy dogs (my kids)

A roof over my head

Fresh Air to Breath

Pretty Snow to watch fall (even if it is cold)

Day 2 of Steroids and feeling a little better already

Only 1/2 of my body is Numb and I can still have feeling on my Right Side

That I don't have to work right now and can heal

I finally got to visit Cabellas at Christmastime and see the animals

Jason Statham

TIVO

Afternoon Naps

Dreams (The good ones)

Valentines Day (Any reason to celebrate love)

Friends and Family

Nieces and Nephews

The feel of my husbands embrace, he gives the best hugs

It's going to be 50 here on Saturday

I'm mostly thankful for the peace I've felt in my life the past few days and I hope it continues. I thank God for that.

To be a guinea pig or not

2011-01-18T20:47:00.002-06:00

Would you involve yourself in this Study if you were having increased symptoms and disability over the past two years while on Copaxone?

http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=4440

2 weeks to decide

2011-01-18T00:10:00.003-06:00

Hi All:

I have 2 weeks to decide what my next MS Drug will be and if I want to play guinea pig and take place in a 2 year drug trial where they assign my drug to me. I think I am going to choose my own drug at this point. BUT - WHICH ONE?!

This year alone I've had two relapses with consistent symptom progression and I noticed my doctor wrote on my chart SPMS when I left the other day. He and I will discuss that next time. In the meantime, I need to choose the best drug to fight my Spinal MS, Neuropathy, Problems with Balance and Walking as well as just PAIN. So, in the comments please give me your personal experience/feedback or tell me why you're an advocate for your drug of choice.

I am researching everything like crazy but for the next two weeks I need to cram in allot of information to try to make an informed decision. I appreciate all opinions offered to me.

Thanks!

How Neuro Linguistic Programming Helped My MS Symptoms

2011-01-11T22:31:00.008-06:00

I attended a MS Group Meeting this weekend in which the speaker, David P., discussed how to use Neuro Linguistic Programming (NLP) in MS to facilitate healing physically, mentally and emotionally.

NLP Strategies and Techniques have a wide variety of application to change dysfunctional thoughts, feelings and behavior into a more functional and life-enhancing ways of being. These NLP skills and techniques can be quickly learned. NLP may be used as a stand-alone therapeutic process or may be used to supplement and elaborate upon others models of therapy.

NLP may be effective in treating a wide variety of disorders, including but not limited to physical disorders/illness including pain management, physical healing, symptom relief, dealing with medication side affects, etc.

What NLP is:

Neuro-Linguistic Programming (NLP) is a controversial[1] approach to psychotherapy and organizational change based on "a model of interpersonal communication chiefly concerned with the relationship between successful patterns of behaviour and the subjective experiences (esp. patterns of thought) underlying them" and "a system of alternative therapy based on this which seeks to educate people in self-awareness and effective communication, and to change their patterns of mental and emotional behaviour".

What NLP is NOT:

- NLP is not the "power of positive thinking"
- NLP is not a substitute for medical interventions. It is important to continue to work with health care providers.
- NLP is not a cure all. Nothing works all of the time.

There were about 20 of us in the group and after about a 1 hour long instruction and discussion on NLP he used some of his own techniques for Pain Control/Management on a few of us. I was one of those people. I was numb/pain from my mid-thigh down that morning and it was just a constant nagging annoyance. I had trouble walking and would not get up during the meeting unless I had to (my husband got me refreshments). Towards the end of the meeting David had asked me a few questions about what my symptoms were and what they felt like.

We together came up with the Metaphor I felt like I was walking through mud. So he asked me to put that picture in my mind of walking through mud and then in a second window or picture to picture myself walking on a soft carpet. Think a TV with picture in picture. Then he told me to replace in my mind the picture of the mud with the carpet over and over again - 5 times maybe. He called it Swoosh. So I was swooshing away the thoughts of walking through mud with walking on a pretty soft light yellow shag carpet in my mind. After about 10 seconds of doing this, he asked me how my legs feel. They felt pain free and no longer numb. He then asked me to get up and walk. I walked a good 20 feet with NO PAIN. I was thrilled. I sat back down and he continued to speak to others. I realize what I just did was a Visualization technique. A technique that for a period of time took away my symptom.

NLP is not Visualization, I just compared it to that for the particular exercise he had me do. There are many NLP techniques that help other MSers with pain and symptom management. I plan to look into this further. Some good resources are listed below.

Resources:

NLP Techniques: How to use them

NLP Coaching

Richard Bandler - Co-founder of NLP

Look Out MS Matador

2011-01-05T14:11:00.008-06:00

What will happen in 2011? We can't be sure. What I am sure of, is that some things will never change including the unpredictability that is MS.

Sometimes it takes a smack in the face or numbness in the legs to get you going back on the right track. And for me 2011 is a year of Change. Change in the way I treat me body. Change in the way I live my life. Lots of Changes are going to happen this year. I will Change the Path of my MS!

Right now I am dealing with Severe Numbness in both my legs and the whole left side of my body. Can't see the Neuro till next week but in the meantime put myself on some low dose predisone I had at home. It helps with rest, but the minute I try to do anything the numbness is back. So, I am doing my VERY best to be positive and deal with these symptoms while making my 2011 plan to change my health and my life for the better.

I'd like to loose 54lbs and according to www.caloriecounter.com I should be able to do so by November 2011. If I stick to 1200 calories a day and get exercise. Which is my goal. Only difference is I have MS to deal with and the Chain Reactions it causes in my life plan. By nature I am a planner. I love to plan. However, I can be indecisive so I love to change plans. This is mostly due to my daily battles with MS. This year of Twenty Eleven I have a plan to loose this weight and be an advocate for my own health. That plan cannot change.

2010 went down in the books as not such a great year for me. 2011 will be better and I am here to announce this goal of mine so I can put a counter up on the site and hopefully gain some support from my Blog Buddies! I know an important part of being an advocate for my health and my MS is to be fit and strong. That is my goal. So you will hear me post about it among other topics this year. I'm glad to be back in the blogging world and hope to reconnect with many of my old friends and make many more new ones!

So look out...this year...I'm taking on my MS....and I'm a BULL!!!

MS Trial Alert: New Copaxone MS Trial

2011-01-04T09:40:00.002-06:00

Per the MS Society's website:

MS Trial Alert: Investigators Recruiting for Study of Less Frequent Dosing of Glatiramer Acetate

Read the full article HERE.

Blogging Hiatus Over

2011-01-02T01:05:00.002-06:00

I am back to blogging after a LONG Hiatus. I have been dealing with ongoing increase in MS Symptoms the past 5 months. I will blog about that as I return to the blogger world. I hope you've all been well and Happy 2011!

Nothing like getting Shot and then Run over as well!

2010-08-29T03:32:00.007-05:00

What a month! In the past month, I've had a MS Flare Up, Done Steroids, had 2 weeks of side effects after said steroids, had to go out on Short Term Disability (STD) at my job which in turn has cut my salary in 1/2 once I am even approved for said STD. Then a week ago today I got a call that my grandmother broke her hip. Last Monday I find out she broke her hip in 4 places and that she also had a heart attack (we are now guessing she had a heart attack which lead her to fall down and break her hip). By 8pm Monday night I was notified she wasn't doing real well and I decided to come up to see her. I booked a flight and I arrived by 4pm Tuesday just in time to wake her from a Morphine sleep to say "Gram, It's Me, I'm here and I love you". She smiled at me and mouthed back she loved me too, then closed her eyes again.

Then my sister Lisa, a hospice nurse told me that she was starting to show signs of "actively dying" and told me what some of them were. We stayed at the hospital that night till about midnight and Lisa returned to the hospital Wednesday morning at 6am and called me to get ready and come over she didn't have much time left. So my other sister, Mary and I got over to the hospital quickly and were there about 1 hour before my Gram's breathing started turning for the worse. All 3 of her grand-daughters around her, holding her and praying, she took her last breath shortly before 9am.

During all this excitement I knew I was getting sick, my left ear hurt before I even got on the airplane and really hurt after I got off and I am basically deaf in my left ear. With all the funeral arrangements, notifying everyone and trying to start cleaning out her personal belongings at the apartment etc. I put off going to the doctor until after the Funeral Yesterday (Saturday), but, I knew I had to go because it was now moving into my chest. And my voice had been going in and out for days. So now I have a double ear infection and possible bronchitis. Lovely. I mentioned the high doses of Steroids I was on a few weeks back for my MS and the stress I was under lately and of course I got sick...the doctor was not surprised to say the least. Now I am suppose to assist with cleaning out my grandmother's apartment this week, meet up with friends & family from PA and some how rest/recover. And of course my flare up symptoms have re-emerged since I am so sick and worn down, but are slightly better, THANK GOD for small things.

And I miss my dogs! They're cute little faces and daily cuddling always helps me feel better! :) I'm not looking for pity here, I just really needed to vent! I can't wait to get home and healthy again and back to normal, I'm exhausted!

My Body Is One BIG Spasm

2010-08-21T07:42:00.004-05:00

Friday I went and had a MRI of my Thoracic Spine. Then I saw my Neuro again. I told him what's been happening over the past 2 weeks since I last saw him and did the steroids. Bladder issue have cleared up. Swallowing issues still exist and of course the pain in my legs and inability to walk or move. The Fatigue and Exhaustion.

His Final Diagnosis yesterday? Spasticity. My entire body is just one giant spasm. When you have muscles in constant spasm who wouldn't have pain and be unable to move/walk. Baclofen/Gabapentin is not cutting it. So he gave me Klonopin. He wants me to take .5mg during the day and .5 before bed this weekend and see how I do. See if the spasms subside at all. My muscles are TIGHT all over, I can just sit here and feel it. I'm going to do stretches and yoga to assist as well. He thinks my swallowing issues are also throat spasms.

Spasms...sounds like something that should be easy to fix right? Well...from what I gather not. My Neuro said "When you were diagnosed with MS you lost all rights to control your own body. Your muscles will just do what they want now." I'm all to familiar with what spasticity can do to a body, I saw my mother go through it and it ended up leaving her so tight that her hands/arms were actually point the wrong way. I don't want to use the word deformed, but, it was close. So great news...NOT.

********************************

Definition: Spasticity is a constant and unwanted contraction of one or more muscle groups as a result of a stroke or other insults to the brain or spinal cord.

Over time spasticity prevents the normal voluntary contraction of affected muscles.

Examples:
In order to open your hand, its extensor muscles must become contracted at the same time that the flexor muscles become relaxed. Thus, flexor muscle spasticity in the hand can prevent hand opening when the extensor muscles can't overcome the involuntary contraction of the flexors.

*******************************

MRI RESULTS:

NADA. NO NEW LESIONS and no reason that would cause what's happening to happen other than spasms. WOO HOO! No New Lesions in my Thoracic spine...BUT, I have to see a speech therapist to get my swallowing issue checked out and maybe a MRI of my neck to check for lesions there if the swallowing issue continues. But he seems convinced this is all caused by spasticity.

NEXT STEPS:

I get to take a few weeks off on Short Term Disability and recover, try some new meds to control the spasms. See him again in 3 weeks.

Of course in the meantime, I will try to learn anything and everything about controlling spasticity. So by all means share your tips and tricks for controlling body spasms...share all you know please!

Thanks for all your support these past few weeks!!!

FMLA & Family Drama when you have MS

2010-08-17T10:32:00.004-05:00

Well as of today I am out on FMLA from work. Though I do not yet know if my Neuro will sign off on the papers, but, as far as my boss is concerned I'm out on it. I see my Neuro Friday and he is out of town until then, so here's hoping he'll see that I can barely move so I can't drive myself to work nor have the energy to work.

He'll want me to do IV Steroids though and I won't do them. I think I need rest, supplements and I am going to start the Swank Diet. And investigate Tysabri etc... But no more Roids. Not yet.

So I blew up at my family (Dad and 2 sisters) via email because it has been 12 days since the start of this Flare Up and not a single one of them has contacted me via phone/text/email to see how i was doing. My blogger friends and in-laws offered me more support than anyone else has thus far. I realize I am 850 miles away but we communicate via phone, email and text other times so why not now when I really need the support?! I called my dad on Sunday as it was his birthday and told him I was going to have to go out on FMLA and he said to me " What about your job? You Don't want to loose it."... my reply via email was - "who gives a BLANK about my job, I can't walk, swallow or have bladder control".

Now granted because of these things I am a bit high strung, but, give me a break. Your daughter makes it clear how she is suffering and your response is "What about your job?". Really?

Anyway, I told them how I felt and told them not to bother even replying to my email that I'm alone in this and I'll just remain that way. And when it comes to my family I am alone. When it comes to my friends I can be just as alone. Because the only people who truly understand this disease and the consequences of it are those who have it. I feel blessed to have made such good friends who have MS and do understand, without you, I'm not sure I could make it through. I don't know how my mom ever did it before there were computers and ways to keep up with all the support and knowledge in the MS Online Community. I'm Thankful.

History Repeats Itself

2010-08-15T00:48:00.005-05:00

About 18+ months ago I asked the question of Neurologist, Dr. Sethi -

I wanted to see if you would inquire with Dr. Sethi which disease modifying drugs he felt worked best for someone who has several Spinal Lesions after 5 years of MS with no previous DMD's. If they cannot tolerate interferon's what would be his next course of action?

I'd appreciate it! (Lanette also wants to add that she has 4-5 brain lesions and the same in her spine.)

-----------------------------------------------------------------

His answer....

Hello there. Thank you for asking that question. Spinal MS (a patient with MS who has predominantly MS involvement of the spinal cord, the brain is relatively spared) is at times associated with high morbidity and mortality rates. The reason is that all the tracts which carry nerve impulses to and from the brain are concentrated in a relatively small area in the spinal cord. So even a small strategically placed lesion in the spinal cord can cause significant neurological impairments. Patients with spinal MS present with slightly different clinical signs and symptoms. They may present with what is called transverse myelitis (this is an involvement of the spinal cord usually at the cervical or thoracic level). Transverse myelitis can be devastating because all the descending motor fibers from the brain and the ascending sensory tracks are packed in the small diameter of the spinal cord. So any involvement of the spinal cord has the potential to affect all these tracks. Depending upon the level of cord involvement patients may have either weakness of just the legs (paraparesis or paraplegia) or all the four limbs may be involved (quadriparesis or quadriplegia). Usually the bladder and bowel are involved too and patients may have complaints of urinary incontinence. Sexual dysfunction is also commonly reported.

Spinal MS is treated in much the same way with traditional disease modifying drug therapies such as interferons. If a patient cannot tolerate one particular interferon, it may still be worthwhile attempting therapy with another interferon (for example if you cannot tolerate interferon beta 1 b, interferon beta 1a may be tried). The other option for RRMS would be to use glatimer acetate (copaxone) or Nataluzimab. Nataluzimab can at times have very serious side-effects and potential complications. Hence there are strict criteria which determine which MS patient can receive this drug.

-----------------------------------------------------------------------------

So, here we are about 2 years later since my last Flare that prompted the above question and I asked the same question again. My current Flare is exactly the same as the last. Copaxone isn't cutting it. Dr. Sethi is not the first, but rather the third Neuro that has told me Spinal MS typically has a high morbidity and mortality rate. And....I have Predominately Spinal MS. I have more lesions in my spine than in my brain. That's bad. I'm upset. I don't want to become disabled and die young like my mother. I don't want a life that ends to soon due to some Fing incurable disease. I do not have the strength to go through what I saw my mother go through. Sitting here crying about it won't help. It won't stop it, but sometimes you just have to cry.

February will be 8 years since my MS Diagnosis. I'm still upset. I'm Mad. I'm Scared. Why do some have easy MS paths and others harder?

Miami: Colorsplash

2010-08-13T23:30:00.006-05:00

When dealing with MS upfront and personal it's the little fun things that you need to make you smile and life enjoyable. For me tonight, it's watching "Colorsplash: Miami" with David Bromstad. I love vibrant color. I love Azure Oceans. Hot Pinks. Rich Golds. The Latin American style I see in Miami. This is where I want to go on vacation next year....telling you now hubs...we are headed to Miami! :)

I've really had it with being "land-locked" here in TN for so long. I miss the ocean. I can't wait to see it again. I really am hopeful that it won't be too long before I can see the ocean again. This summer has been rough here as I've mentioned and right now having my MS flare up is not helping my mood.

Today for the first time in a super long time I awoke so dizzy and exhausted I could not move. Physically could not move. I was afraid to walk down the stairs to the first floor for fear of falling. I took my time and made it down for a bit, then spent the rest of the day in bed resting with the dogs. My Mother in law had just left last night after being here 2 days to assist me and I was alone. I called hubs and he was ready to come home for the day, but, I made him wait to see if i could make it alone. Alone with 2 demanding dogs. I made it, but, tonight, I still have vertigo something awful and spasms in my chest/torso/esophagus. I feel like I have a lump in my throat/chest. This is making me hesitant to eat after the choking incident I almost had last week and after seeing my mother actually almost choke to death during eating when she had MS. I do not want to be my mother or have her MS Progression. I must do something to change my MS Path. Now to figure out what that would be.

In the meantime, I'll watch Color splash: Miami and dream of Azure Seas and Cool Breezes.

Steroid Fever

2010-08-10T20:39:00.003-05:00

Well tonight was the last dose of my Steroids. And let me tell you these things give me a fever! I have been eating ice cream several times a day to cool down my internal body temp, even with the Cooling Neck wraps. I suppose there could be worse things.

Unfortunately, for me there are worse things since the start of the Roids. My spasms are much worse, I'm in god awful pain, I can barely walk as of tonight and tomorrow I see no way around telling my Boss what is wrong with me as I doubt I will make it to work. Not in this much pain. Why exactly do Steroids actually make you feel worse before better? Like much worse. I don't get it. Can anyone explain that to me?

The heat here is still in the high 90's low 100's and I see no break in sight. I don't want this to become Summer 2008 again, but I think it is...which means I am going to be out of commission for awhile and I am praying my work will work something out with me that I can work from home as commuting won't be an immediate option. Can't really afford to loose my income right now as we are just getting back on our feet.

The good news is my bladder has calmed down. That's it. That's all I got for good news.

It's Officially a Flare Up - Steroids Day 1

2010-08-08T01:34:00.003-05:00

After all the symptoms I described in my previous post and my bladder spasms increasing to extremely uncomfortable and painful porportions I gave in and Went to my Neuro on Friday. He put me on a high 3 day dose of Steroids (Dexamethasone), Ditropan XL and my usual Baclofen, Xanax XR and Gabapentin.

I have to get a follow up MRI in 2 weeks of my Thoracic Spine (It's been 2 years since I had one, also 2 years since my last BIG Flare) and I also am getting a Urologist Consult. Unfortunately these are all common MS issues during Flare's as you may know. And he agreed with me that the problem and cause of the Flare is Ultimately the heat this summer. Even though i live in AC all day long, the in and out of the cars, the walking the dogs, the small times I'm in the heat. BAD.

So Today was day 1 of the Steroids. Not too bad. As I recall my symptoms get worse before they get better while on the Roids. But no halucinations today...Woo Hoo!!!!! Though I do have the killer insomnia...almost 2am right now and I am WIDE awake. No sleep medications are even helping. But, my bladder has already "calmed" down a bit. Which is great!

So, we'll see what tomorrow brings. Thanks to everyone for their kind words and support during this challenging time. I realize it's a progressive disease, but, can't it progress super slower please! LOL :)

Hot! Hot! Hot!

2010-08-03T22:54:00.004-05:00

It's been a super hot summer here in TN, just like much of the US and tomorrow we are going to have a heat index of 112. I think the heat for the first time in a few years is starting to affect my MS in a negative way. Tonight, I practically choked at a restaurant on soda. My husband was worried when I could not stop coughing. I had to leave the restaurant not to keep disturbing other guests. I got outside and had one big cough which seemed to make my throat relax (and forced me to get sick a little). My throat felt like it just tensed up and would not relax, a spasm if you will. I was not pleased. I've also been having some bladder issues and of course the usual "heat symptoms" of fatigue and spastic/painful legs. At least the usual symptoms for me.

Have you noticed any issues from the heat this summer? Does anyone else remember when they were young/pre MS and Summer was their favorite season? Now it is my least favorite, even behind Winter, which is hard to do because I am not a Winter fan.

The good news for me...I have ALOT going on this Fall and can't wait for it to begin! Travel, my 2 year wedding anniversary, parties and holidays! Is it October yet?!

Superman's Home & Fort Massac - Metropolis IL

2010-07-10T15:31:00.021-05:00

Hi Everyone! We went to Superman's home town of Metropolis, IL July 4th weekend. It is a really super small town with a HUGE Statue of Superman and a few "Super" shops. The more scenic and enjoyable part of the trip was visiting Fort Massac State Park. We took a carriage ride around the park/campground and walked around the very well maintained Fort.

Me with Superman Statue

Supergirl...I wish I had her body!

Our Carriage Guides: Ed and Fred

Which was Fred and which was Ed again?

Me and Hubs in Front of the Main house at the Fort.

The Fort from the Ohio Riverfront

The In-land view of Fort Massac

Fort Massac Corner Building

Inside the Fort

The Well in the Fort

View of the Fort from the Riverfront

Hubs leaving the Fort to go to the Riverfront

Who's got MS? I Do? Oh, I forgot for awhile.

2010-06-26T23:50:00.003-05:00

I'm watching Bon Jovi on Saturday Night Live right now and they are singing the song "Back when we were beautiful" and I think wow...you still are...older, but, still beautiful. I bet they are referring to their 20's as I know that's when I felt my most beautiful. I wish I was young again for no other reason than to live life a little differently now that I am that much more knowledgeable about life.

So, I haven't been doing my MS shots for a few months now. For various reasons. Life has been crazy, though we moved almost 1 month ago, we are still not completely settled. I had my gallbladder out. The dogs have been sick with allergic reactions and work has well been busy. I was offered a management position I declined and it would seem they are still wanting me to do it, so I may. Not allot more money, but, more cash is more cash. But, the point is I haven't been doing my shots for another reason also. I found out when I had my Gallbladder out about 6 weeks ago that I have a "fatty liver". So, I googled what a fatty liver was and it scared me. I can't have even more health problems when I'm not even 40 yet.

So, this week, I am going to start Weight Watchers as well as looking for a good Chiropractor, start doing Yoga and Zumba and I'm now just excited about life again. Lots of good things hopefully coming my way this year. Promotions, Fall/Winter Vacations, Visits from Family, I'm going to be an Aunt again etc. But, I want to know more about what's going on inside me before I start my shots back up again as I am concerned they could be negatively affecting my liver. It would suck to get liver disease considering I don't even drink except like a handful of times a year.

Is it wrong to just "forget" about your disease for months at a time once every so often? Really, those who think and live with their MS everyday are they better off than me who just forgets about it until a symptom flares up? Sometimes you just have to live life...and forget about your MS. Is that wrong? Dangerous?

MS Magazines

2010-05-17T17:02:00.002-05:00

Has anyone noticed that all the MS Magazines come at the same time? Or within a week of each other. The 3 I am speaking of are Momentum, The Motivator and MS Focus. All 3 very good. And it's so cool to now see some MS Blogger faces actually in the Magazines. How exciting.

I recommend these Magazines for anyone who is not currently receiving them. I'm not sure how I got on all these MS Mailing Lists. I think it first happened when I was diagnosed and looking for every piece of information available.

Click on the above links and join today!

Update on ME and Nancy Davis Foundation

2010-05-13T15:05:00.003-05:00

Hi There Everyone! Lots going on here.

In the past two weeks, my dog Gigi has had surgery to remove 2 stones from her bladder, our living room furniture was destroyed in the great Nashville Flood and last week I had my gall bladder removed and have subsequently had a wake up call. Now, our house will be low-carb for my Diabetic husband, low-fat for Me and low-PH for our dog Gigi to reduce her chance of future bladder stones. Too funny. I find this amusing.

Also, we are moving to our own place June 1st and will have a full house to ourselves and our own big kitchen and fenced backyard for the dogs to run in and a grill outside...sidewalks, little stores and restaurants within walking distance. It will be lovely. I am thrilled! Pictures will be posted!

I've also been realizing I need to take better care of myself and my disease. I feel lately like I am not keeping up with the latest and greatest treatment options, nor taking care of my physical well-being. The Gall Bladder is my wakeup call. I'm reworking the budget now to see if I can ditch the high stress job for a PT job or even just a less stressful one. Part of what made me realize that I've not been keeping up was this post by Nancy Davis Foundation. Who until now, I've not heard of and know nothing about. Does anyone know of her and her foundation and if so what is your opinion?

I hope to take a more active role in my MS, the MS Blog World and assisting others while getting myself healthy and in shape. There have been many contributing factors which prevented this the past 2 years and finally they are about to be gone..I hope.

That's it for now. Hope to regain all my readers again soon and look forward to putting a new blog design out there. Happy Thursday!

Reposting: Secondary Progressive MS, What Your Doctor Won't Tell You

2010-04-25T23:54:00.002-05:00

Diane wrote such a good post at A Stellarlife that I had to re-post it and share!

http://dj-astellarlife.blogspot.com/2010/04/secondary-progressive-ms-what-your.html

Our Trip to Homosassa Springs Florida

2010-04-11T19:41:00.011-05:00

Mini Flare?

2010-04-04T21:36:00.004-05:00

The warning signs are here...I'm having what I like to call a Mini Flare. Flare Up the past 2 weeks of previous symptoms. With...a new and unusual symptom...Calf and Feet swelling. Can swelling be an MS Symptom? Other than when your on steriods? My legs were so swollen my doctor had me go for a leg ultrasound for a DVT. Which was negative. So...low dose steroids...for now...the problem with Roids..as many of you know is that they have horrible side affects.

I forgot how many I get, overheated, insomnia, spasticity gets dramatically worse, blood pressure goes through the roof, headaches, upset stomach etc... The roids actually make me feel worse I think. But, is it worth it in the long run. One never knows.

It's been almost 2 years since my last flare (July 2008) and that was a bad one. I don't want to go there again. I have not been the most healthy since going back to work FT last July and even though I am flourishing professionally, I am working long hours, living with the in-laws currently (until next month) and not eating right or exercising. I'm done with all of that...I honestly believe the healthier lives we as MSers lead the better our disease progression and outcome.

This week I will begin to watch my calories, fat and carbs. After my legs improve from this Mini Flare, I hope to move more than I have been and loose enough weight and get strong enough to start getting healthy again. Before each Major MS event in my life I was unhealthy. I'm there again and I have to take action immediately. Does anyone else notice a link between how healthy they eat and exercise and how their MS Flares up?

Scientists Find There May Be 2 Forms of MS

2010-03-29T16:50:00.001-05:00

See the CNN Article HERE

What do you think?

Happy Spring Everyone!

2010-03-21T04:13:00.001-05:00

Life's a Gamble

2010-02-22T19:19:00.007-06:00

Hello Readers! Long time no contact! :-)

Well it's been 2 month since I last posted and with good reason. See the chart of my life's events below.

Sept 30th - Had to move in with in-laws as husband was out of work since Mid-July.

Oct/Nov - Working hard at my contract job so as not to loose it because it is our only income.

November - I am hired on Full Time and get Health Benefits, as we had been without them for about 18months.

Early December - Matt starts going to his Endocrinologist (Diabetes) and getting his blood sugar under better control.

Dec - Mid-Dec - Matt gets a job! Not a great job, but a job.

January - First month of Matt's job he is traveling and traveling for his job and sometimes coming home after working 20 hour days and only getting 5 hours sleep.

January 21st - Matt comes home from work around 6pm and is not acting "normal". He eats, laid down at 7pm because he didn't feel good and woke up 2 hours later talking like he was drunk, slurred words, unable to move, felt exhausted. I thought it was his Diabetes and gave him sugar to bring up his blood sugar. He eventually felt slightly better that night, but, never right and kept saying this doesn't feel like low blood sugar. The next day he stayed home from work and seemed fine.

January 23rd - Matt feels the same way again - we go to the hospital - come to find out that at age 41 he had a Stroke! He had a Stroke because his blood sugar had been out of control for about the last 18 months. Many diabetics have Strokes and Heart Attacks. We immediately go see my Neurologist, his Endo. Doc and a Family Doc. He is now on a baby aspirin a day and all the following tests he had came out fine (Echo for his heart, Doppler for his Carotid Arteries, 3rd Cat Scan of his head for blood flow testing). So we have no cause for the Stroke other than his Diabetes. They do call it America's Silent Killer.

February 11th - 3 weeks to the day of his Stroke, his Boss calls him in his office and says we are going to have to let you go as you have been seen answering emails on your personal cell phone. Oh wait....you mean the personal cell phone that contains my WORK email?! Bottom line is they wanted to fire him because he had a Stroke and he drives their vehicles for work and well "what if" he had another Stroke while he was driving their vehicle. HIGH RISK. In the State of TN there are no laws protecting the employee from such a dismissal. It took them 3 weeks, but, they tried to find a way to get rid of him. So he is now unemployed AGAIN.

We filed for unemployment if he gets it...it's a whopping $275/week. That is the maximum ANYONE can get for unemployment in the state of TN! Crazy! That won't even pay rent/mortgage.

Now you'd think that living with his parents would be a cost savings for us, but, because of this cold winter and their 1950's house that just leaks heat (I see $$$$ signs coming out the roof every time I drive home) we pay them about $550/mo in Utilities, then $150 for our storage unit and another $350 in gas because we live so far from my work, plus the car repairs I've needed. You do the Math...we are saving squat by living with them.

On top of all this, work is so stressful, I am having to take daily Xanax and biting my tongue daily as to not tell my boss off...my boss who wants me to become a manager so I can deal with the daily crap he is trying to deal with..and failing. NO THANK YOU! I am on a sinking ship. Working 50 hours a week, sometimes 60.

So between Hubs not working again, his being depressed because of all this, his Stroke, Nagging him to care for himself and his Diabetes so as to not have another Serious Stroke, Trying to get along with the inlaws, running constant numbers in my head trying to figure a way "out" of this whole situation - I am feeling hopeless. And Oh Yeah, we have to be outta here by May for when his Sister and Nephew move in...a whole other long story.

Many of my friends and family are having similar job/money/health issues. All I hear is bad news anymore. I really need a vacation...alas...I cannot afford one...

Oh well, what's new with you all? Tell me something good! :)

** I should mention my husband is fine after his Stroke - it was a "warning" Stroke, he did not loose any bodily functions**

Hormones and MS in Women

2009-12-20T17:27:00.009-06:00

Last time I saw my Neuro about 6 months ago, he mentioned to me that I should probably not have serious MS progression until after I hit Menopause. Not that I won't have flares or that he was determining my disease progression, because we all know that's not possible, but that I may experience the more debilitating symptoms after I begin Menopause. After hearing this at that time I took pause and thought, it makes sense. Part of what may control our disease could very well be hormonal.

I remember thinking of my mother who had MS and while she was pregnant with my younger brother and sister (10 years my junior) all of her symptoms went away and immediately after the "twins" were born, naturally at that, she came home in a wheelchair and never got out of it again. I won't rehash my mothers story as it is not my story. But it has most definitely influenced my choices and how I live with MS. One of those being mindful of hormonal levels and preparing for when my hormones start to change.

While I could be 10-15 years away from beginning Menopause, my mother went through it early, in her late 30's. Which is exactly the same time she began the progressive track of the disease. So, while at my Gynecologist this past week I mentioned what my Neurologist had said and asked about how Pregnancy Hormones influence our bodies. To my surprise, my gyno completely understood what I was speaking of and was familiar treating women with MS who are pregnant.

The hormone believed to make all those pesky symptoms go away during pregnancy is Estriol. Estriol is one of the main 3 estrogens produced by the human body. I've been doing some research and found that studies regarding Estriol and MS are and have been underway and for that I am thankful. My Gynecologist mentioned to me of some self-pay hormonal treatment centers that are in my area and some of the Synthetic Compounds of Estriol that are becoming available. While she said it isn't something she would recommend for me yet, nor was she promoting them, she did want me to know about it. But also that it is quite expensive.

Some of the results I read about from the MS Studies included up to 80% reduction in active lesions and improved cognitive function. I'm not going to write a complete paper on Estriol and MS, but, I want to make sure women with MS are aware of the link. I had already planned on taking replacement hormonal therapy when I am menopausal, this is just one more reason to consider it.

Please do share any knowledge you have about this topic in the comments section!

Anxiety, High Blood Pressure and Stress

2009-11-20T10:20:00.003-06:00

Yup. It's back. I have been doing so well at work for 4 months now that I've taken on much more responsibility including some management. My mind loves it, my body doesn't. I've been through this so many time with my past 2 jobs and I just can't figure out the balance. The Ying/Yang. More than anything I think the negativity at these jobs just pushes me over the limit.

My Boss was away this week so I was in charge of 11 people. 11 people who are working somewhere they don't want to be and are unfulfilled. 11 people who just complain all day about the heavy workload and the lack of help they get from other departments. All of which is true, but, hey, complain to management, not the fill in manager. I'm one of those people who everyone wants to talk to because I am a good listener. I listen. So I take on their stress and it just multiplies in my body.

I've got to find a way to manage stress and not let it send me into a MS Flare or make me feel so bad that I start missing too much work and loose my job. I've not lost a job yet, but did have to quit my last one because I couldn't take it. My mind can pretty much handle everything, it's the body that can't. It all starts the same way, GERD acts up, then my blood pressure rises, then anxiety attacks. The GERD has been happening for weeks now, I of course just ignore it and try to change my diet and hope it goes away. NOT. This week my BP was high several days and I get migraines because of it. last night it was 156/110, night before 170/99 - you get the idea. However, I don't want to do a BP Pill because I know it is just stress induced. Wed, Thurs and Fri I had to take an anxiety pill to calm myself down and lower my BP (nice side effect).

So, today I called my Boss told him how it was and that I would not be into work today. I am not superwoman. I feel I can be mentally, but even wonder woman needs to rest. So, Monday he and I will have a chat and discuss my role going forward and how I DO NOT want to be a manager in any way shape or form. That simple.

Has anyone ever experienced similar symptoms? And you just know things aren't going to get better till you make a change? It is so rewarding to be back at work, however, my health has been on the decline due to stress since I got back in the work force. I know it, I ignore it as long as I can and now we are back to the vicious cycle or circle. I'm not being negative about it, it's just the way it is. So what changes can I make this time to NOT be another few months down the road and have to quit again. Because my husband is still unemployed so quitting (which I DO NOT want to do) is not even an option. Heck just TODAY we finally have health insurance again. I'm open to suggestions here! Tell me your experience with Stress, Work, Life and suggestions you have. :)

Maybe I need a stress ball... hehe

The Color of Life

2009-11-13T20:56:00.005-06:00

Gerber Daisies

I'm walking through the mall with my friend "K", taking in all the bright colorful clothes and shiny jewelry. Looking for a new perfume we stop in the Macy's fragrance department and ask for samples. Alas, the clerk informs us that the perfume companies are cutting back and she has very few samples. So, we go around spraying scent after scent until they all blend together and we can't smell anything but a mix of perfume in the air. I determine there is one scent I like, called Daisy by Marc Jacobs. Ironically, my favorite flowers are Gerber Daisies and my dog is named Daisy. But, before I spend $80 on a bottle of perfume I want a sample. So now I am on a sample hunt determined to try before I buy.

While searching for perfume we walk the entire Mall and check out a few of our favorite stores. I haven't been to a mall in over a year and I am in shock that most sizes in clothing stores now start at "0". Since when is ZERO a size? A woman who wears a zero would have to be thin as a stick. I also checked out some costume jewelry, bath and body stuff and remembered what fun it is to just go shopping - even window shopping! I hadn't walked that far in some time due to my Flare that lasted from mid 2008 - early-mid 2009. During this wonderful shopping experience I realized a few things...I really need to loose my Flare Weight (weight I gained during the 9 months I could do little but sit on my butt) and enjoy the fun of shopping to find cute outfits and look good again. It sounds crazy, but this shopping trip lifted my spirits. I didn't get anything, but, just looking around, socializing and looking at all the pretty new stuff was much fun.

It makes me reflect and think of personal goals I have for myself. Little things, like being able to fit into a normal size (not plus), getting my nails done, buying perfume to make myself smell attractive, purchasing some new music, getting my colored contacts again, a blossoming career and being the old me. Yup, this flare threw me for such a loop that I lost me. I'm finding her again, the old me is coming back. It's amazing how great life is once you live it fully. This was a nice reminder of the beautiful color that is life.

How These Five People Fight MS

2009-10-19T22:12:00.002-05:00

Here is an excellent new website with some superb bloggers talking about how they live victoriously with MS.

Check it out - http://www.howifightms.info/

October is my favorite Month...

2009-10-04T09:45:00.007-05:00

Hello! Long time no "see". Life is finally calming down a bit for me now so I am going to blog on the latest and greatest.

Move

We've been officially moved in with my in-laws for 1 full week now and so far so good. We'll see if I feel the same way after 1 month of living here. Last minute issues like my in-laws telling us "No you can't store your furniture and stuff here" lead to more money spent on a storage unit and such but hey, at least we have a roof over our heads and the apartment complex who was going to sue us for last months rent has agreed for us to just pay in payments.

Job(s)

My job is going fantastically! In 3 months they've realized I was a Tier above the work I was doing and promoted me (still while I was a contractor) AND They've offered me a Full Time position as an actual EMPLOYEE with benefits!!! Woo Hoo! This will take about 1 month till all the references are checked, background check etc...but I am hopeful by November I will be an employee and eligible for health benefits!!

Hubs still has not found a job, but, he is going to apply this week for some Retail Christmas jobs etc to get something...anything. And still making contacts in the IT world so he can hopefully find something!

Life

Angel of Friendship Willow Figurine (I love this one because it has a dog like mine)

I celebrated my 38th birthday yesterday, 1 day after my Mother-in-Law celebrated her 65th. My sister in law and nephew came up from Florida so we could make a BIG deal out of MIL's birthday and because they (the golden child and her offspring) were here nothing really occurred for MY birthday. We went out to lunch and did a little window shopping and then last night my legs killed me...Gabapentin take me away....and it did....eventually. The friend celebration will be in a few weeks so that's good! :-)

Willow Tree Friendship Figurine that I got from my Sister In Law Sarah

I started collecting Willow Tree Collectibles and got my first 2 for my birthday. I commented how I liked these a few weeks ago and Hubs was paying attention! I've never collected anything before, so I thought I would start with these! :) You can buy them at any collectible store and cracker barrel! Or HERE (this link is for the benefit of my husband, assuming he'll read this!)

Next month is our first wedding anniversary. I can't believe it's been a year since we went to Jamaica. Now that we are living here, I hope to save save save after hubs is working and get back there again someday. I'll have to plan something special to celebrate!

I am enjoying my favorite time of year (Fall), looking forward to my favorite holiday season (Christmas) and just excited to be living life again with fewer problems and MS interruptions. I am going to color my hair a chestnut color today for fall (fingers crossed I'm doing it myself) and really love the fact I have to wear long sleeves most days now.

MS

Since this is an MS Blog I do not think I am jinxing myself by saying....WOW MY MS SYMPTOMS HAVE SUBSIDED THE PAST 6 WEEKS!!! I think my body is now in the rhythm of working 8-10 hours a day, coming home and relaxing and I switched my work hours to 9-6 which my internal clock loves...I get to sleep in till 7:30 some days! Getting on a regular schedule has resolved all my sleeping problems, working has been great for my emotional state and I am starting to feel like a "normal" person again. I loyally do my shots nightly as I really think they have a HUGE impact on how well I feel lately.

Don't get me wrong, I do have weak or painful leg days, however, they are few and far between. I realize what shoes I can and can't wear and I am disappointed that I must get rid of even my shoes with wide heals...my legs can't take them. One day at a time, the old me is coming back...now to loose all this "MS" weight. MS weight is weight I gained during the last flare up when I sat around for over a year and did nothing...

Stress is still a constant, but, we are taking steps to making our lives better and less stressful and that is a good thing! I am in 3 Fantasy Football leagues this year and I pretty much suck in all 3, I laugh though as I am realizing there are more important things in life and I'm HAPPY now and thankful for all my blessings. Now I have to go kiss my husband and hug my dogs!

Enjoy the beautiful Fall weather friends! My favorite month is upon us and It just gets better as each week goes by!

Boxes, Boxes and more Boxes

2009-09-10T19:38:00.005-05:00

Hubs and I have begun packing up our belongings to move in with my inlaws in 2 weeks. Not the ideal situation, but we are completely out of options. Hubs is still unemployed and my salary cannot support us. This is the most humbling experience EVER. Our age and having to accept help from family, God is constantly teaching us lessons I suppose. Selling off furniture so we don't have to store it, going from a place of our own with just us and our dogs to living in a small ranch house with PARENTS. If only we had another option.

I will have to drive about 90 miles each day round trip for work...and work EARLY at 7am...this will be a challenge. Getting up at 5, leaving by 6 and then at work at 7. Ugh. Alas, I dare not complain as money is money and at least we can afford to feed ourselves, make the truck payment and pay our new bills (we are paying the utilities at the house). Even if we still have no health insurance. Beggars can't be Choosers. My immediate manager at work was laid off last Thursday night! They are doing a reorganization and he was a causality....but they will keep me... the cheap help...lol

On a positive note, the girls (our Bichons) love being at their grandparents house with a huge yard to run around and hanging out with their Grandpa who takes them with him fishing and hanging in the yard. So they will make the transition easily. The lack of privacy is going to be challenging, but again I am blessed to have a place to go and a roof over my head.

Thanks for letting me vent...yet again...one day I will get back to the purpose of this blog....

Now back to the boxes, boxes and more boxes that liter this place....

The Open Road

2009-09-03T16:52:00.005-05:00

We are hitting the open road! Nothing like a Road Trip to forget your troubles! My family has been nice enough to fund a trip for Matt and I to drive to PA for a visit this holiday weekend. We both need to get away SO bad that I am very thankful for this. It will be good to see them as we haven't seen them since New Years. See my niece Asia play high school field hockey, play with the boys, Darius (5), Braylon (4) and Marcus (2) and just relax, cook-outs, visit some of my favorite Lehigh Valley haunts and DO NOTHING.

Alas - Tuesday I'll have to come back to reality, but that leaves me with 4 days of nothing but FUN FUN FUN!

Woo Hoo!!!! Now off to pack for the 13 hour drive! Just so you know VIRGINIA really IS the longest state in the union...I think we are in that state like 6 hours of our drive...no kidding!

Disability

2009-08-30T22:06:00.002-05:00

Hello All: I am going to meet with a few disability lawyers this week. What questions do I ask? What information do I need to make sure is covered. My life working FT right now and dealing with my MS symptoms kicking my ass is preventing me from doing alot of research, so if you have advice, please leave it in the comments.

Matt's mom is going in for a Cardiac Cath tomorrow morning, he is still unemployed and all but one of his leads has fallen through and the 1 that he has is taking their good ole time making a decision. I had to leave work early 2 days last week because I was so fatigued and in so much pain I couldn't take it anymore. We are moving in with his parents at the end of September and I am praying it will not negatively affect our marriage. The good side is we will have a roof over out heads, the bad side it will cause me to drive 88miles a day to and from work during rush hour ... yeah that will help my MS symptoms flare. Lovely.

I can't quit yet, but, may be forced to try to negotiate a PT schedule, though I don't believe I will get one...they need a FT person. So fingers crossed I won't throw myself into a huge flare up because as of Tuesday I have no health insurance. No money for Cobra...sold everything I could...such is life.

That's about it for tonight...I have to get to bed..

Here's What's New With Me

2009-08-23T21:08:00.005-05:00

Hi Everyone! It's been a little while since I posted anything of substance here. Lots going on these days. Here's an update.

JOB

I've been at my FT Helpdesk job 1 month now and It is going pretty well. Some Days the Fatigue is a bit much, but most of the time it is Okay. My legs are MUCH more stiff lately, spasms have gotten pretty bad as well, but, it's great to be back in the work force and having a daily schedule. So while Yes, it is affecting my health, it's doing so in 2 ways. Positively for my Emotional Health and Negatively for my physical health. Not so Negatively though that would cause me not to work. I never realized how much having a purpose can affects someones mental state.

I say this because my husband has been depressed to extremes this past week and his not having a daily job to go to has negatively affected his mental state. On the bright side, he does have 3 companies interested in interviewing him this week. So fingers crossed he'll have multiple job opportunities coming up soon. After these opportunities came his way his mood improved drastically.

BLESSINGS

Amazingly in these hard times, I have been blessed in so many ways. One of them having total strangers offer me their Copaxone shots that they will no longer be using. Thank you to Amy Gurowitz at Multiple Sclerosis a Life of Learning. I also have another person who is going to be sending me their excess shots since they recently switched meds. The kindness of people is amazing to me and in today's world it means that much more.

I was also blessed to sell my painting and for my husband to have some 401K cash so we can stay in our apartment a month longer and not have to move in with the inlaws. That I do consider a blessing.

TIMING

The timing of things in life does make me laugh sometimes. Today for the first time in about 2 months we went to church and the deacon's homily was about Faith in God and returning to the church. Makes me smile because every time I need to hear something from God, when I go to church he usually sends me a direct message. Not all the time, but, when I really need to hear it. I feel like things may be turning around for me now and hopefully will continue to do so. While we may be stuck in TN for now, it could be worse.

I have to give the apartment complex 60 days notice if we are going to move out at the end of October. Alas, that is hard to do especially when right now it would be hard to find another apartment without hubby working. On the crappy salary I make, no one is going to rent to me. So, I have to figure this all out THIS week before the end of the month. Fingers crossed Hubs will get a job offer this week.

So that's a little of what is going on with me. Football season is here and that makes me happy! The Holidays are right around the corner and my favorite time of year is about to start in 2 months! Life could be worse.

Conquering The Storms

2009-08-10T19:11:00.005-05:00

I'm sad. I had to sell my one and only piece of valuable artwork today. I purchased this painting in 2001 about 1 year after my divorce was final. Painted by Thomas Kinkade, it is Titled "Conquering The Storms"...fitting for the storms I had just finished in a tumultuous marriage with an abusive husband. And the new storms I was facing alone as a single woman.

It is the highlight of my Dining Room Wall...and soon it will be gone. I often look at it and think of the Storms I've Conquered in my life and how many there have been. Alas, to make it through the latest storm, I must sell my beautiful painting and Conquer this Storm too.

Behind Every Cloud Is a Silver Lining

2009-08-09T15:43:00.003-05:00

2 weeks into my new FT job now and my body is already reacting badly to the stress of working FT at a semi-stressful job. Not super stressful, but definitely a few days where I felt an elephant sitting on my chest from stress. My MS Symptoms have chimed right in to let me know hey...we are still here...don't forget about us too!

Pounding Headaches, Twitches, Spasms Galore. Though I do sleep better at night now that I get up at 6:30am daily. This week I kicked a co-worker inadvertently when I had a spasm, luckily it was under a conference room table so she couldn't see it and I just said "oops, sorry" and then proceeded to move around like I meant to move there. Nothing like kicking someone when you don't plan on it!

Work itself is going fine and they are praising me like crazy - I'm used to it - I am good at my job and the people are all in some way colorful. I like that it is 5 miles down the road (for now) and I can come home and see the dogs at lunch. Or like on Friday...eat lunch at work (they bought us pizza) and come home at lunch to nap for 25 minutes.

I am a contractor right now which means I do not have benefits and since my hubby lost his job 3 weeks ago we can no longer afford my Cobra insurance so I can't buy my copaxone shots any longer until one of us gets a job with benefits. This does worry me as I noticed a big difference in my overall health once those shots kicked in after taking them for a few months again. I am going to call Shared Solutions to see if they offer any FREE shots and how to get them.

Unless a miracle happens and hubby is working by 8/17 we will have to move in with his parents who live 35 miles North of us and 40 miles from my employer. I will have to commute 80 miles a day for VERY little pay if I stay in this job. This does not please me. My body is already not thrilled I am working FT, I can't imagine what adding such a commute on would do...you know we have to be careful not to push ourselves into an MS Flare Up. It's all about Balance.

So that's most of the latest. Hubby is REALLY not handling being unemployed very well. He is depressed and crabby. He gets hopeless and upset...all of these things I am feeling as well so I understand. They say behind every cloud is a silver lining...I'm waiting to see it.

Stop the Ride...I want to get off!!!

2009-07-27T01:40:00.002-05:00

Sorry I haven't been around much lately. Lots going on around here trying to make sure we "land on our feet" after this latest job layoff for my husband. I start a job this week doing Helpdesk work which while should be lower stress is also about only 60% of what I was previously making salary wise. In today's economy everyone is cutting back and paying less it would seem. So while I got a new job and I am happy to finally be getting out of the house and earning some dough, it won't be enough for us to actually live on and hubs has GOT to get a job to start by next week or I fear the worst will happen. We won't land on our feet. So while there is a little relief, it's not nearly enough.

He was let go without any compensation package of course and I've decided that I will be dropping my health insurance as of August 1st. We have no choice, pay my Cobra or pay the Truck payment..kinda a no brainer. Worst case scenario we will have to move in with my in-laws who live 37 miles from us and about 40 miles from my future employer - so that commute would not be fun or worth it at all for the low salary. Not to mention my husbands family drives me nuts with their passive-aggressive, selfish attitudes. Those people just need to learn to speak their minds - but that's a whole other issue.

I've put my largest asset (next to my car) up for sale on Ebay to see if we can get enough cash to cover Septembers rent. God willing we will. It's amazing the things you will sell when you have to so you can keep a roof over your head and food on the table. I have a whole other appreciation for those who lived through the great depression.

Times like this make me thing how DUMB it was for me to ever leave PA and the rock solid secure well paying job I had there - even though I really was tired of it. Hard times like this also makes me miss my family more and the familiarity of "home back then". We wanted to move to PA by the end of the year. Now I am not sure if and when we will ever be able to move there. Frustrating.

Back to the 2am job hunt for the husband...neither of us can sleep...gee I wonder why?!?!

What's the plan Stan?

2009-07-17T22:36:00.001-05:00

Stan being God. My hubby lost his job today. So we have no income. Are probably going to have to move in with the in-laws. Life's challenges just never end. Never...

Group Project Cancelled

2009-07-14T09:39:00.001-05:00

I won't be doing the Tips/Suggestions for the Newly Diagnosed, as no one has submitted anything to me in the past week. Oh well, I tried. May be a bad time of year to do it with everyone vacationing and such.

Group Project: MS Tips/Tricks for Newly Diagnosed

2009-07-08T22:58:00.003-05:00

I would like to put something together in the form of a post for those who are newly diagnosed. We each have our own MS Story, but, let's put the focus on some helpful Tips and Tricks that really could have helped us upon our initial diagnosis. Time/Energy Savers, Questions to ask, MS Books to read, Holistic Medicine, Supplements, Aides to look at etc...

Assignment: Email me (lifeisachainreaction@gmail.com) 1 or 2 short (no long explanations) and sweet tips and/or tricks that would help a newly diagnosed person. Share anything you think is useful. I will then take all the emails and create a post - giving each person their individual credit of course.

I've been meeting more and more people being diagnosed with MS and it seems our numbers are growing, so, why not help each other!

Due Date: July 14, 2009

Post Date: July 17, 2009

Lets see how many tips/tricks we can come up with!!!

Musikfest 2009!

2009-07-03T09:19:00.003-05:00

I wanted to inform all my readers of a great music festival that takes place every summer in Bethlehem, PA called Musikfest. Drawing over 1 million people each year, it is the biggest and best Music Festival I've ever been to and I've been to many all over the country.

From the "about" page on the Musikfest website:

In 1984, nearly 182,000 people attended a small, grass-roots music festival in Bethlehem, Pa. featuring 118 performers and 295 performances on six stages. At the time, no one knew how large the event would grow or how long it would last.

Amazingly, more than two decades have passed since that first Musikfest. And from those humble beginnings, the event has blossomed into a 10-day musical spectacular that attracts more than one million people from throughout the country.

The festival, which showcases nearly every musical style imaginable, features:

More than 300 performers from across the country and around the globe.
Musical programming at 14 different indoor and outdoor stages (11 stages are free).
10 great nights of headline entertainment.
Mouth-watering foods, plenty of children's fun and activities and a spectacular closing-night fireworks display.

As a tribute to Bethlehem's Germanic heritage, Most of Musikfest's sites have german 'platz' names- the word 'platz' is German for "place."

-------------------------------------------------------------------------------

This year my husband and I are going to attend the Festival and see David Cook, last years American Idol winner who we love. If you have any free time and want to check out some great music, foods and fun be sure to visit Musikfest! Maybe we'll see ya there!

Heads or Tails

2009-06-30T22:37:00.004-05:00

Heads - I get a new FT Job in TN that I interviewed for today and they already made an offer to me - then I countered offered at the end of the day for more $$$.

Tails - I do not get the new FT Job in TN and go back to PA sooner than later and begin my job search there.

By this time tomorrow I should know the answer to the above Quarter Flip/Flop. I'm letting it up to chance. I don't feel strongly about it one way or another. Whatever is meant to be will be.

-------------------------------------------------

On a side note, after being on Copaxone almost 6 months now, I REALLY feel like it's working. Even hubby noticed the past 2-3 weeks my endurance and energy levels have improved greatly. I pray that my body will continue to respond so well and I can work Full time without any issues no matter where it is at in the future.

What a Month!

2009-06-29T23:35:00.004-05:00

God must be preparing for a big shindig in Heaven...Look at all the talent he's requested lately:

Gary Papa - a local sports journalist that has been around in Philly for as long as I can recall.
Michael Jackson - Talent out the Wazzoo back in the day and then well I think he just lost his mind.
Billy Mays - He is the reason I've ever heard of OXYCLEAN!
Farrah Fawcett - I loved her on Charlies Angels and I keep watching the reruns.
David Carradine - Kung Fu Movie Master
Fred Travelana - Actor
Ed McMahon - The Tonight Show and many other things

June seems to have been an active month for "celebrity" deaths - in fact Wikipedia even follows it. View a long list here of many great people who've contributed to our world and society.

Gimmie an "E"

2009-06-29T00:35:00.003-05:00

For Exhaustion!

Last week I was on cloud 9. This week I am still floating among the clouds, but, now I am on cloud 7. I was so gung ho last week on getting a new job and a new life, that I pretty much ran myself into the ground. By Thursday I was toast after 4 days of non-stop stuff. I pushed myself to go out with the girls Thursday night for dinner. Friday though I just vegged all day and then Sat pushed again and then Sunday vegged again. The ongoing heat and humidity in the south is not helping, alas, I shall push on and hope for better days.

With the Deaths of Farrah Fawcett and Michael Jackson this week it reminds me (someone who can get caught up in the past) just how much I miss the 70's and 80's. Being young, no cares, no worries etc. I miss the past. I know we have to live in the hear and now, but, the hear and now is very stressful and well exhausting. There's that word again..Exhausting! Upon my exhaustion, I tend to reflect, miss the past, question the future etc. I apparently also have dreams of Shapeshifters - very vivid dreams that I will post about later.

And speaking of Exhausting, for the first time ever tonight Hubs and I watched a marathon of Jon and Kate plus 8 and man alive I don't know how those two keep going. I would have had a breakdown a long time ago. She is one strong lady.

Shoot for the moon. Even if you miss you will land among the stars!

2009-06-22T08:26:00.014-05:00

I used to be a Glass Half Empty sort of person. Pessimist. However, since adjusting my pain meds last week something *clicked* and now I am a Glass Half Full person. I've learned how to control my pain for the past week to a point where I am rarely in pain during the day even though it is in the mid-90's and humid. This does lead me to wonder if it's the change in temps and barometric pressure rather than the heat and humidity that bother me. However, for the next 7 days it will be in the mid 90's and humid and I have to say, I am okay with it. I don't love it, but, I no longer hate it more than the average person who dislikes being hot.

As I've had this change in attitude, I've realized all the things I was missing out on in life by not seeing things through rose colored glasses. Yeah, I have MS. But, I also have the ability to have a full and complete life. MS should just be an annoyance. Not something to live my life around. So, I have been job hunting since the end of last week and with my new "Can Do" attitude, I plan to land a job this week. I've already received 1 call back.

" In The Middle Of Difficulty Lies Opportunity." ~ Albert Einstein

Before MS, I was a vibrant professional doing well in her career and had almost everything I could ever want. I can be that person again. I will be. I want those days back of no worrying about money and debt. No reasons that I had to stay home all day. I want it so bad I will make it happen again, even if I have the annoyance of MS and have to push through the pain it brings me.

Life changes are coming and I'm excited. I'm willing to work for what I want, my future, our future. I will become an active MSer. I will prevail! So can you! We all can. It is easy to forget that sometimes, but, even with MS we can all succeed and live our life's dreams!

I am excited about all the possible new opportunities, teachings and life experiences that lie out there for me.

" Adopt the Pace of Nature: Her Secret is Patience." ~Ralph Waldo Emerson

Please Advise on Leg Pain Meds

2009-06-15T21:55:00.003-05:00

Ah...the heat and humidity are up for summer and I already am having much leg trouble. PAIN from really tight calf and thigh muscles. Spasms galore and intense fatigue. And did I mention the PAIN!

Can those with MS who have leg issues themselves please review my meds below and tell me if they are on as many drugs for just their legs? Seems like alot to control Pain, spasms and fatigue.

Soma - 350mg at Bedtime
Baclofen - 20mg daytime and 20 nighttime
Requip - .5mg every 8 hours as needed
Gabapentin - 300mg daytime and 600 nighttime (this does not work for my leg pain though, so what's the point?)
Copaxone

I am taking all these meds and still in so much pain. It just seems like many of these meds do the same thing, so why do I need them all??? I realize you are not doctors, but, I would appreciate if you would share your med/leg pain experiences and what has or has not worked. My limbs thank you!

The BEST Cooling Device Ever!

2009-06-10T00:03:00.009-05:00

I loved summer before I was diagnosed with MS. I don't "Hate" it now, but, I don't enjoy it nearly as much since my body no longer deals well with the heat.

Like many of you, I suffer from problems of my Core Body Temp rising and not being able to handle the heat. Too much heat exhausts me. I don't want to spend my entire summer in my home, so instead, I have researched and found a cooling device that works really well for me! Because lets face it even air conditioning doesn't always cool us enough.

It is a Neck Cooling Device from Aqualitywater.com. It's called the ArctiCollar Personal Cooling System. You can view it HERE. The website informs you about the cooling technology and how it works.

I purchased the light blue one -Stats as I've found them:

It is surprisingly comfortable. This Neck Cooling System looks like you are wearing a whiplash collar for lack of a better comparison. So I personally don't mind wearing it in public if needed, you can just tell someone you have whiplash. LOL

If you FREEZE the Cooling Pack and wear it non-stop it can last up to 2.5-3 hours, depending on your surrounding temperature. If you refrigerate it, it lasts about 1-1.5 hours. I purchased the set with 2 cooling packs so when one pack is warm I can get the spare out of the freezer and put the old one back in the freezer. If I wanted, I could have constant cooling 24/7.

Also, another benefit is being able to keep it on ICE in a cooler, I keep a small cooler in my car so if I want to go somewhere and not wear it, I can put it on in my car right after I am in done with my errands in public.

This is my first FULL week using it daily as it has been in the high 80's here and super humid. I was glad to have it with me on my Florida Trip!

My Personal Usage and What It has done for me:

Wearing the ArctiCollar has allowed me to be able to work around the house, take the dogs for a walk and do some chores without getting overheated and exhausted. As long as I had the collar on, I felt cool and good. I will say fatigue hit me like a brick in the afternoon after I have removed the collar, not sure if it was related.

The Collar feels comfortable upon your bare skin and there is only a pleasantly cool feeling. No burning or stinging of your skin after removing the Collar directly from the freezer.

I have been able to sit outside on my porch with my dogs reading in the heat of the day and feeling warm, but, not hot. I even considered taking it to the pool, though, that would be one BIG tan line! I just prefer to swim in the water instead to keep cool. And I know that when I leave the pool I have a nice cold cooling device waiting for me if needed.

While there are many cooling options out there for us, this is the one I preferred to try before getting a big vest and for me it works well. I highly recommend it.

I wanted to post about this, as Joan's topic for the Chat this week is regarding Personal Cooling Devices and I am not sure if I will be able to attend the Chat or not. If anyone has any other great cooling device experiences please do tell me in the comments. I'd be interested if they could make a cooling device inside of a scarf that you could wear around your neck, in your hair or something like that.

In the meantime, break out your Blender and keep cool by having Strawberry Daiquiri's like in the picture above. Keeps you cool and it's yummy!

The Golden Heart Award

2009-06-08T16:51:00.003-05:00

The Golden Heart Award

Herrad presented me with this award today. Thank you Herrad.

Do go visit Herrad's Blog HERE and leave comments for her. I welcome all my fellow terrific MS Bloggers to help yourself to the above award as you all deserve it. Our MS Blogging community is a great way to receive and give support and share MS Information. I am thankful you are all out there!

MS is a Strange Disease

2009-06-04T23:32:00.002-05:00

Thank you all for the information on Tysabri. The good news is I don't need it yet. Supposedly.

I went to my Neuro on Monday, he told me that he reviewed my MRI's and My spine looks fine, and maybe even some of all those Lesions have "healed". Healed? Like they were there and now they are gone? WHAT? Doesn't that part of your spine just become "dead" like your brain and the connection permanently broken? That's what YOU DR. Told me before, now you are contradicting yourself. Did you mean to say the lesions are there but not active?

Has anyone heard of such a thing? And if my spine looks improved why the heck can't I walk? Some days only to and from the living room to the bathroom? What is with the I want to chop my legs off Pain?! And the spasms you can just watch them in my calves?!

At some point during our conversation he says "Not everything that happens to you is MS, May be some problem in your spine." And then...Get This....he compared himself to HOUSE, MD (the TV show). So hubby said, yeah he is like house...thinks he is GOD and doesn't really care for the patient. He basically gave me no answer for all this worsening experiences and PO Steroids and sent me on my way. UNBELIEVABLE! Can you say SECOND OPINION!

Oh and at one point he pushed on both sides of my groin hard and said that was the problem. Sometimes related to MS, My groin was swollen - that's what he gave me Roids for...said after a week of them my groin should be fine and my legs better. Who the hell wouldn't hurt when you pushed on your groin hard.

Does any of this make sense to my fellow MSers???

Flare Again - Tysabri?

2009-06-01T01:14:00.003-05:00

So, I am having a flare up right now. I had fresh MRI's done last week and then Monday, I will see my Neuro, Review, Go on Solumedrol and then discuss beginning Tysabri in a Month. I've covered this in the past, however, I'd like to hear from those of you who have been on Ty and what it has and has not done for you. How long you've been on or will be on it, as well as your body status before and after you went on it.

Cathy, You're excluded from this request as I will talk to you soon! :)

So tell me your Tysabri story and please do give me the details of why you chose it as a treatment plan and in what way has it helped you? What can you do now that you could not before? I've read all the research and would now like to hear from those who are on it or recently stopped it. No Tysabri pushers needed.

I appreciate it!

Caretaker and Family Expectations

2009-05-29T00:34:00.007-05:00

MS Spinal Lesions

Below is a letter I sent to a few close friends today. Do you ever get frustrated when your having an MS Flare and people you thought you could count on you can't? Especially when one of those people is your own father? The Father that you helped and made you grow up to fast to be a mother figure to your siblings because your mom had MS and couldn't walk since you were 9. Should we not have expectations from our Parents? Especially when my father has dealt with this disease all his life?

I may be over-reacting a little bit as I just found out that I may now have more Cervical and Thoracic Plaques and next week have to do IV Solumedrol for 5 days. Which as my husband says makes me a basket case and causes me MANY side effects that I can't be left alone during the treatments or weeks after the treatments.

Here is the letter:
------------------------------------------

I am requesting prayers. I've been having increasing MS Symptoms for about 1 month. I've been avoiding them hoping they will go away. After realizing they have been getting worse the past week, I broke down and went to my Neurologist today. He concluded what I was afraid of. My Symptoms/Lesions in my spine are progressing. I had a MRI today to see how much they've increased. I have the following symptoms the past 1-2 months, some old and some new:

http://en.wikipedia.org/wiki/Uhthoff_sign

http://www.mult-sclerosis.org /LHermittessign.html

http://ms.about.com/od/signssymptoms/a/ms_hug_pain.htm

http://www.mult-sclerosis.org/mssymptoms.html

In addition to really bad balance problems and Restless Leg Syndrome. Same as last summer only worse now and new symptoms as above. I won't go on and on about it, I start IV Steroids next week for 5 days. I may have to go into the hospital for them as they trash my body and I get much worse before I get better. And I have no one to sit with me all week while Hubs is at work. I've asked my retired father to come down and sit with me during the day while Matt works and he said , and I quote "Yeah, I really don't want to come down so you can get the IV at home. Can't they just put you in the hospital?" Yeah dad, why don't you just stay there, I'll handle this. Put me in the hospital while on IV Steroids, which will basically eliminate my immune system and I'll just stay there with all the hospital germs. Thanks for nothing.

Matt has reserved taking off the first few days of the IV and if he has to he will take off the entire week and use ALL his vacation. *Sarcasm Coming* - That will make it easier for us to move North...where frankly I need to be due to the colder temps. But, don't worry about it dad...you have so much to do up there being retired and all, no need to come down and help our your daughter. Ass.

Anyway, I'd appreciate it if you can say a prayer or two for me...These Steroids really screw with my head and body from the side effects. Thanks.

-------------------------------

This will be my second Big Flare in 9 months. If I am getting new plaques within a 9 month period of time...I'm screwed. Should we have certain expectations from Caregivers and Family? Everyone I know seems to not want to be bothered and has their own life to live. Matt can't do it all himself, he needs to work and I'll need some help during this current fight. I have always been a caregiver and if the situation was reversed, I would be on the next flight to help...I guess my family can't be bothered. Makes me sad. Do you have expectations of help from Friends, Caregivers or Family?

Restless, Mind, Body...and Legs

2009-05-25T23:58:00.007-05:00

My mind is Restless. I have constant thoughts about our upcoming goals to accomplish before the end of the year so we can return to PA. How can we save the money we'll need? Can I suck it up and live with my in-laws for a few months to save? How will that affect our relationship?

My body is Restless. Insomnia night after night. I can't get my mind or body to relax and wind down. Nothing causes me full relaxation. I'm a tad depressed and moody. I walk around everyday in Pain. And not a dull pain. I don't think anyone should have to deal with this kind of pain just because they wanted to walk from the car to the store and home again.

My Legs are Restless. Which in turn makes my mind restless and exhausts my body and it is a vicious cycle. Last week the Neuro gave me ANOTHER new pill for RLS (Restless Leg Syndrome) which I started this Friday night and man the side effects are killing me. Mirapex is a somewhat popular RLS drug that is popular for use in Parkinson's Disease (according to my sisters - RN and Pharmacy). The first night I took it knocked me on my butt, Exhausted me to sleep from 10pm to 4pm the next day! Though not a straight sleep, I felt like I was hit by a bus, however I have to tell you the drug worked within 1 hour for my RLS.

I had several side effects, Hallucinations, Headache, Flashing lights in my Left Eye (I have a thinning of my Retina), Nightmares like you would not believe, it made me feel very foggy when I was awake and trying to hold conversations with friends was difficult. My blood pressure dropped really low a few times, and the Dizziness I've experienced over the past few days is making me just want to sit still. Today I was trying to walk up only 2 steps and everything started spinning I almost hit the pavement, but my hubby was there to catch me. So tonight I am not taking the drug, even though I know when I took it the past few nights, with all the side effects my legs were pain free. That's right..no pain. Until today, when the drugs wore off and the pain is back.

Do you ever wonder if you should push through the side effects of a drug? Will your body get used to it? I don't think I could get used to all these side effects even though it completely calms my legs down. Will someone in Big Pharma please create a drug that can just address the issue without having all these side effects?

Can anyone comment on any RLS drugs they've taken and side effects they've experienced?

Our Trip To The Nashville Zoo

2009-05-18T00:05:00.010-05:00

The Carousel at the Nashville Zoo.

The World's Smallest Elephant Souvenir that Hubby Wanted. I thought it was a Pencil Eraser!

4 Parrots in the Bird Sanctuary

2 White Bearded Gibbons

An Ostrich eating

Part of Meerkat Manor at the Zoo

Friendly Meerkat - Look at it's little feet!

Giraffe Running

Giraffe Eating off the Tree

The Clouded Leopard - He looked Mean

A Beautiful White Bengal Tiger who Recently had 2 cubs.

Entering the Elephant Savannah

Elephant Rolling a Tree Limb

2 Elephants Just Hanging Out

2 Hyacinth Macaws

1 Hyacinth Macaw

Sunday Hubby and I decided to go to the Nashville Zoo. I've lived in TN 5 years now and I've never been to what is a diamond in the rough. It actually felt like we were somewhere else, outside of Nashville enjoying the beautiful 65 degree day. I've decided this is the perfect temperature for me. It was great! They had many benches to sit and observe the animals and I loved the Bamboo area where you can actually rent and hold parties. Most of all Hubs and I got to have a "fun" day. It was a great stress escape!

So if ever in Nashville, I highly recommend the Zoo. Something not Music City Related, but very cool.

And it isn't even summer yet....

2009-05-11T08:02:00.002-05:00

Well we had our very first REALLY humid weekend here in TN. And it did/is killing me. My arms and legs haven't spasmed this bad since last summer with my flare. And then last night my bladder started spasming. My sister and I don't think I have a UTI, because it is clear, but I may go get checked today anyway. I of course pushed myself to get out this weekend and see a movie and such and that did not help the pain. Or the fact that these pain meds last like 3 hours and then I am screaming (into a pillow) again. This leads me to wonder - Why don't all people with MS have pain? I know many do, but, why not all? My Mom didn't. Strange.

While I like the extra sunshine and shorter winters, summers in TN suck ass. I've noticed since my move 5 years ago that this state is MUCH more humid than PA. It affects me mostly because of my health issues, I'm sure they don't bother the average person this much, but, man alive if this is what the humidity is going to do to me, I am moving back north like yesterday and will just deal with the winters.

Anyway, guess I'll go call the doctor now and try not to bitch so much about these spasms and pain - though I gotta tell you this is freaking crazy painful. He is going to tell me I am having a flare up I'm sure. I hate calling this man. Never any good news, but, I guess nothing with this disease is ever good news.

Lacking Inspiration

2009-05-08T22:46:00.005-05:00

It's been 1 year since I quit my job due to increased fatigue. Not increased enough to warrant not going back to work PT. Which I would love to do. However, I don't know what I want to do. I do not want to go back to a corporate job. I want something that would inspire me to want to get out of bed in the mornings. A friend recommended working at a flower shop, well, you don't see many of those around anymore do you? Not when you can order flowers online to be delivered directly from nurseries (proflowers.com for example).

I also need to loose some weight and yet, I lazily don't do much other than walk the dogs like 1 mile a day. And sitting on the computer during the day isn't exactly about moving. But, usually after that 1 mile my legs are done...at least for a few hours. I really need to see about getting social security however, I'm not sure my Neuro would support that decision, he seems to think I am better than I am regarding symptoms.

And my husband always has me arrange everything since I am not working and it is just overwhelming. Thinking about doing bills, appointments, grooming the dogs, arranging vacation plans etc... I blame the MS for the feeling of being overwhelmed by something that the "old" me 6+ years ago would just deal with in like 1 day. Now, I just get stressed. I've cared for my family so long and handled everything growing up that I now need someone to care for me. MS or not. Does anyone else feel they cannot handle Stress as much as they could before their MS?

Okay...well, I'm going to go and try to sleep, maybe inspiration will strike me tomorrow.

Adult Stem Cells Used to Stop RRMS

2009-04-30T05:16:00.002-05:00

A friend recently emailed me an article she read regarding Adult Stem Cell Research. Follow link below:

Adult Stem Cell Treatment Leaves College Student Free of Multiple Sclerosis Symptoms

This article is from February so a few months back and you may have already heard about it, but, I thought I would pass it along in case you did not! :)

Positive Sunday - It's almost May!

2009-04-26T15:20:00.002-05:00

1. I can't believe it is almost May already. 9 months since my last MS flare up and hopefully years before my next.

2. We had some good discussion of MS Free Zones on Joan's Chat last Friday night. I realized what a few of mine are and how we all need them.

3. I realized that for me Facebook is an MS Free Zone. I only use it for OTHER life events, fun stuff going on and to keep up with friends about stuff other than health or MS. See more about this in my next post.

4. We had a beautiful weather this weekend here in TN. We dined alfresco with friends and I ended up having 4 cocktails (I haven't done that in ages), which lead to a nice buzz, then room spinning while trying to sleep and a slight hangover the next morning. But it was worth it! Much fun!

5. We watched the movie Marley and Me - just made me want to hug my pups!

6. Bought hubs some new summer shirts on sale Sunday. Being 6'4" we have trouble shopping for him and I was ecstatic that Casual Male XL store was having a spring sale! And I had a coupon!!!

7. Loaded up on Meats and Salmon at Costco at SUCH a huge discount that we can eat dinners at home for a month!

8. I caught 10 Bluegill fish at my Father In Law's pond on Wednesday and my fishing skills are improving - though I did end up getting 2 ticks ...Ewww...

9. I am keeping my fingers crossed my car problems won't be as costly as they sound after finding out this weekend that something is wrong with my Oxygen Sensor(s) - I have 3 on my car, my engine cooling fan AND possibly my Catalytic Converter. It goes in the shop early this week for further diagnosis - I priced parts though and then about cried after - car places rob you! I wish my dad, our family mechanic lived closer....

10. My coupon book is coming along nicely - I copied an idea a friend came up with for storing coupons and having an easy way to categorize and see what you have available quickly. I created a binder with pages of clear baseball/trading card holders and dividers for various coupon categories and I can easily and quickly see what I have. 1 coupon per card holder and you just have pages and pages of coupons to choose from! Great Idea Carol!

Stress and MS Do Not Mix

2009-04-20T14:56:00.008-05:00

I realize this should be my "positive monday" post. However, I am freaking out a bit. My Love told me at lunch today about a meeting he had with his boss this morning. His Boss/Company Owner mentioned that they have not made enough money for him (the boss) to be paid in the past 4 months. Then later today he had my hubs doing cold-call sales to drum up more business. This is making hubs and I really nervous as we are a single income family. It is a very small company - 4 employees, so who knows when the owner will say enough and just close up shop.

Therefore, we are yet again looking for jobs. However, we are looking outside of TN as well as in TN. Frankly, my personal move to TN has been the opposite of financially rewarding. And my MS progression over the years (I can see it now that I "look back") did not help me stay gainfully employed. Living here has been fun, I met a few new friends, found "my love" and adopted my 2 Bichons. However, we are ready for a change and that may involve a move...depending on where God will send us in this search for a new job. We haven't told anyone we are extending our search outside TN or the states in which we are looking.

We discussed the idea of moving even before we married, as some of you may have read in the past. Well, it's time or it isn't...God will decide by the jobs that may or may not be offered. We feel we are emotionally being pulled in directions outside the state of TN and I hope the need to find a better job may be the deciding factor for us. So for the few local friends who may read this blog, we may be moving, we may not, only 1 man knows for sure and we are hoping he will bless us with a great job opportunity no matter what our physical address may be.

----------------------

On a side note: It amazes me what Stress does to me physically. I just found out about this recent news 6 hours ago and since then, my blood pressure has spiked, I had an anxiety attack, my legs are spasming/painful and I have a migraine. Stress and MS Do Not Mix.

On a positive note: I have the girls below to keep me company and provide unconditional love and support!

Positive Monday - Florida

2009-04-13T22:30:00.010-05:00

My Dad and His Boat

Hello! Here I am back from Florida a week later and time to post about Positive Monday (I may have a bitching Tuesday or Wednesday though! LOL) I'll include pics from our trip!

1. I went to Florida to visit Family and had a wonderful time on Clearwater Beach, eating at the Columbia Restaurant, Going Boating with my Dad and enjoying the Florida spring weather! Happy Dad is enjoying his new boat!

Captain Poppy

2. My hubby got a call about a possible job opportunity, so he applied via a Recruiter and we'll see what happens. If Hubby gets a new job with Rockin' benefits, we can drop my COBRA payment each month.

3. We saw the these cool heron birds that were about 4 feet tall walking around at my dad's house - amazing the wildlife in Florida. We also saw a Gator in the lake we were boating in - he was sunning him self - pretty big guy!

Freaking Tall Herons

4. My Blood Pressure with NO Meds was perfect the whole time I was in Florida. And all my palpitations are gone. I think it's stress that does it to me. In Florida, even with the heat, I felt better. It was good!

5. I got to visit with my Nephew, Michael, in Florida and he is one really cool kid. Doesn't hurt he looks like my Hubby, so I think he's cute! LOL

6. We are going to Florida again in June for a week long vacation and to see Michael graduate from High School.

7. It's good to go on vacation, but, it's great to be home and sleeping in my own bed.

8. I haven't had to cook for 1 week now! :-) Though I am tired of eating out!

9. I ate 1 salad everyday while I was on vacation - this is a record for me - probably because I don't like making salad at home.

10. My sister, Mary who accompanied me on my trip goes home from our house tomorrow morning and trust me this is a positive thing.

Positive Monday

2009-04-06T00:45:00.004-05:00

1. Our new dog, Gigi (10 months), is very outgoing and therefore teaching our older dog, Daisy (2 years) to be more outgoing as well. Daisy has been very happy lately now that she has a sister to play with!

2. I am going to Florida in 4 days!!! WOO HOO!

3. Watched the movie Madagascar with Hubby this weekend and laughed allot.

4. Went to our friends house for BYOD (Bring Your Own Dinner) Night and hung out around their outdoor fire pit, watched my friends play guitar/bass and just had a good time catching up!

5. Joined Costco so I can now get my favorite flavored water (fruit 2O) and TP in BULK at a huge discount! lol

6. I've been getting in a great deal of naps lately - helps with the insomnia at night.

7. No heart palpitations today!

8. Realized while frustrating, my memory does still work...somewhat. Just not always in chronological order - damn me for watching Grey's Anatomy episodes out of order!

9. Was able to revive my husband with Dr. Pepper Soda & Chips/Salsa when his blood sugar dropped to 22 - he was slurring his speech - like he was drunk. Diabetes is tricky!

10. It was hard to find even 9 "good" things worth noting from the past week. I best get working on making my life more "positively exciting" in the future!

Getting to the Heart of It

2009-04-01T22:33:00.002-05:00

For the past 1 month or so I've been having heart palpitations off and on. After 3 visits to the doctor and one just yesterday she's changed my high blood pressure med and immediately did an EKG and scheduled me for an ECHO today as well as halter monitor I need to wear for 48 hours. None of this is fun and knowing my luck, nothing will occur in the next 48 hours. Alas, I will be around and type something more interesting soon. Right now I have a bunch of wires and a monitor attached to me - it is small though thank goodness! :-)

Talk to you all in the Chat Friday if you're there!

Blog Referral

2009-03-26T02:28:00.002-05:00

Hey Everyone! You can read my new post below about the Good, Bad and Ugly going on in my life right now, but, you also really need to read THIS HERE (yup I said it - hillbilly like ;-) post by Kelley.

Meet Cory

2009-03-17T23:53:00.003-05:00

Hi everyone! I'd like to share with you a blog I stumbled upon tonight. It is a MS Blog written by a spouse of a woman with MS. Many of us are bloggers with MS and I found Cory's blog insightful and interesting. Also, I hope it will be helpful for my husband to read.

Find Cory's blog here!

PS - It is a few hours later and I have insomnia again - but this time I am putting it to good use - after reading about 1 year's history of Cory's posts - I know I want to do the Swank diet, get back to Chiropractic, Massage and Yoga and start treating my body the way in needs to be treated - most of all I learned that as many have said "I have MS, MS does NOT have ME!". I believe that right now and I am fired up about it! Thanks for that Cory! I'm done feeling sorry for myself as I have been. I'm ready to fight! :-)

In Sickness and In Health

2009-03-15T21:43:00.005-05:00

Is it fair to ask your spouse/partner/significant other to completely change their lifestyle because if you don't you could be disabled?

Here is what sparked this question -

I read Chekoala's post reminding me of Dr. Swank - and found it impressive he, himself lived to be 99.

Then I read Chekoala's post speaking of the Gawler retreat. Which lead me to....

THIS website and a realization that I may be the single person responsible for not giving my body all it needs in this world to survive MS or at the very least slow it's progression and disability.

Which leads me to the opening question in this post... read above again...

I can't do this alone and I need to be held accountable and if the situation were reversed I know how I would feel, but, isn't it worth doing together if it means you'll have a longer, less disabled life together? I wonder if this one falls under those vows we took "in sickness and in health". If I want to get to the health part...it may have to be done.

Now let me throw this in to the mix, if said diet would help your spouse/partner/significant other because the have Diabetes... how does that change your answer to my first question?

Sugar Free Peanut Butter Chocolate Pie

2009-03-13T13:20:00.002-05:00

Hi Everyone! I made this the other day and it was amazing. Recipe Below!

Ingredients:

1 cup Peanut Butter
1 Graham Cracker Pie Crust
1 large (16oz I think) package of Sugar Free Chocolate Jello Pudding - For Stovetop Cooking - Not Instant
3 Cups of Milk
Whipped Cream (optional)

Cook the Sugar Free Chocolate Pudding on the Stovetop (if you want to reduce Fat - use Fat Free Milk) I used Lactaid Fat Free and it turned out just fine.

Soften/Melt 1-1.5 cups of Peanut Butter in Microwave (1-1.5 minutes)

Pour the softened/melted Peanut Butter into the pie crust - spread around with a spoon to even out. This will give you a thin layer of Peanut Butter. Then pour the Chocolate Pudding on top of the Peanut Butter and fill the crust.

Put the Pie uncovered into the Refrigerator for 6 hours (If you'd like to cover it after it sets and has a "skin" on it go ahead).

Slice, Top with Whipped Cream and Serve Cold! YUM

This is a quick and easy recipe and is so good!

Woo Hoo! It was a good day today!

2009-03-09T22:44:00.004-05:00

It's the little things in life sometimes that make a big difference! Today, I booked a trip to Florida next month! So that's something to look forward too! And today Hubs got a new truck (new to us) so now we have 2 vehicles. For some time (4 months) I've been just stuck at home, unable to work if I wanted too do so because we only had 1 car due to financial reasons. My 20K in damn MS expenses last year killed us! Anyway, it was a good day! I hope it will lead to a better and more stable year! :-)

Now...I am off to search for a job! I'll get to return to the real world and be around adults again who are not my husband and friends! Sounds crazy, but, it is exciting! Finally, my luck may be turning around.

On a side note - the trees are already blooming here in Tennessee! Spring has Sprung! It was 70 degrees today! :-)

I'd be interested to hear from you...

2009-03-09T00:32:00.002-05:00

How do you continue to live a life filled with hopes and dreams after your MS Diagnosis?

What do you do to overcome missing your healthy PRE-MS days and address your health fully?

Do you make a "Bucket List" and if so, do you feel like you are rushing against the clock of disability?

How does one get to "acceptance" of their MS Diagnosis? Are you there yet?

And Finally, do you have trouble accepting help from others because before you could do it all and now you just can't?

Meet Gigi

2009-03-01T22:30:00.007-06:00

Hubby and I rescued an 8 month old Bichon Frise named Gigi today from an 80 year old lady who could not care for her and was going into an assisted living facility. Today was an adventure with her and Daisy fighting and playing and biting. Hopefully it will get easier in the coming week.

Here are some pictures of Gigi solo and with Daisy.

Shared Solutions: Paying co-pays up to $50

2009-02-25T23:43:00.003-06:00

I recently found out from Shared Solutions (Copaxone) that they will cover insurance co-pays for Copaxone up to $50 a month if your pharmacy is one that is enrolled in their program. Unfortunately, mine is not and my monthly co-pay is $50. However, I hope to have new insurance and a new job in the next few months so I am hoping this will change! I just wanted to spread the news and say I find it interesting that all of a sudden (at least compared to a few years ago for me) drug companies are doing what they can to cover your out of pocket costs so you will use their med. Or that is the way it seems.

The brief time period I was going to consider Tysabri, I was given a number to call and discuss them covering my portion of the cost - completely. I opted not to go down that road, but, I was intrigued to hear they do this. And now Shared Solutions/TEVA is trying to do something similar only they are putting a cap on their cost coverage. I was also pleasantly surprised to call Shared Solutions and request a new auto-injector as it had been some time that I was off Copaxone and could not find my old one. They confirmed with my doctor and sent me 2! This is surprising to me because I recall 2 years ago when I was on Copaxone it was like pulling teeth to get a new injector before it's typical life cycle ended. At the time, I was thinking, it is a spring loaded piece of plastic - how long do they think it will last. Well at that time I was told 3 years. Yeah right. If I can get 1 year out of this I think that will be great. I mean we do shoot everyday.

Has anyone noticed more recently that the drug companies are trying to "help" more?

I've started Copaxone

2009-02-20T00:30:00.002-06:00

Day Two on Copaxone. While I do like that this drug has the least amount of side effects, I am not pleased about the huge welt like site reactions I get. I've taken Copaxone about 4 years ago for 1 year then I just stopped. I stopped because my body and I could not stand these bad site reactions. Difference is now I know I have spinal MS, then I didn't know. Now I'll deal with the site reactions and never miss a shot again.

Drinking Tea Can Help Increase Interferons

2009-02-08T23:49:00.006-06:00

I was reading Ladies Home Journal Magazine this week and they had a 3 page article on drinking Tea. They spoke of all the health benefits including increasing your bodies Interferon's. A Harvard study suggested that drinking 5 cups of black tea a day for two to three weeks increased production of a key immune protein, interferon. They said the reason was that L-theanine, an amino acid found in tea (and hardly anywhere else) can build up the bodies immune system and defenses against viruses and bacteria.

They also credited tea with sharpening your brain, boosting your powers of concentration, as well as relaxation. Drinking a cup of hot tea is relaxing. I will not quote the entire article, however, I do recommend giving it a read. I was intrigued, researched and found that Harvard did conclude the benefits in a 1998 study regarding Interferon's and L-theanine. It seems that all Teas may offer some benefit, however, only black tea was tested. You can also drink Green Tea, White Tea and Oolong Tea. The herbal teas, such as, Chamomile, Cinnamon, Ginger, Peppermint etc have their own health benefits as well, but were not included in the study.

This is a quote from the Harvard Study:
"Then, two weeks into the study, the researchers tested the blood of coffee and tea drinkers by exposing it to bacteria in the lab and comparing samples taken before the study to those taken two weeks later. "We found they [tea drinkers] made five times more interferon after they started drinking tea compared to before drinking tea," Bukowski says. The coffee drinkers showed no enhanced production of interferon."

So, I am going to start drinking 5 cups of decaf black tea five times a day and try to add it as part of my lifestyle. So maybe I can increase the Interferon's in my body without being on any Interferon shots. Hopefully, it will work or at least help. Can't hurt to test this theory. I'm tempted to see if my doctor has a way to measure my current interferon level and then again after a few weeks or a month. I'll have to investigate that.

Here are some links to check out if you are interested:

Tea Contains A Key Infection Fighter

Ladies Home Journal: The Healing Power of Tea

It's All About Me!

2009-02-03T02:52:00.003-06:00

That title sounds very selfish I know. However, I am the complete opposite of that and always put everyone else's needs before my own. Which has left me needing to put myself and my needs, wants and desires for my future first. I will fly across the country to help a family member or a friend in need, however, i know that I would never get such care in return. So tonight hubby and I decided we shall put our needs first only. We have too, because, no one else will do it for us. We are just too caring and nice sometimes and will spend all our spare time, money and energy doing things for others. That has left us with nothing. So, as of 2009 we put us first. :)

Hubby started going to the gym today, I plan to start tomorrow. I had a real bad night tonight (It's 3am) with Leg Spasms so I am wide awake and it is just a reminder that I need to loose weight, and improve my flexibility and strength. So tomorrow to the gym.

Next, I need to find a job that I can do without zapping all my energy and just killing myself and my spirit. We need the cash. I need the mental challenge. I also need to find something new that is going to keep me interested. In today's economy it's hard not to just rely on my 10+ years of IT experience and stay in that field. However, I want more. Just not sure what that is...

I did my taxes and was SHOCKED to find out that with 12+ K in Medical Expenses last year I only get $800 back for that (on top of my other refund). That stinks! I would have thought I'd get more than that back. They want everyone to have Medical Benefits, but, when it comes to assisting with paying for the expenses you get nada. Nice.

Hubs and I are still throwing around the idea of moving somewhere else as TN is boring us lately, but, we can't commit to moving either. Have to wait and see how this summer goes and how I can or can't handle the heat. I want to know now. I'm impatient.

I wish I had some trip to look forward to, alas, right now I do not. Hopefully in a few months.

I'm not usually a big website promoter - but - you have got to check out the new Google Earth. WAY COOL! Download and check it out.

What's new with you?

Visualization - Can It Work?

2009-01-25T21:49:00.003-06:00

Do you believe that you can use mental imagery and affirmations to produce positive changes in your life? That it is a choice to be positive or negative? Can you be taught to think positive thoughts and visualize positive life outcomes?

About 6 years ago I began therapy for Anxiety. And during my therapy sessions and doing my own research I was introduced to the ideas of creative visualization. Wikipedia defines it as - "Creative visualization refers to the practice of seeking to affect the outer world via changing one's thoughts." I recall thinking - no way can I change my world by controlling my thoughts. Visualization can help me worry less? Be more positive? Intrigued, I researched and read and tested some of the positive thinking teachings. From what I can recall it was easier to be positive when not thinking of anything in a negative way. However, for me without repetition the visualization of positive thinking would not last.

I am back here many years later planning to revisit this entire line of thought. Can we control our minds to the point we are healthier people? Is the key to any disease inside ourselves and our own minds? Will being more positive ensure me to living my best life and feeling fulfilled as a person?

These are questions I plan to figure out the answers too. I've been depressed as of late. I know it, I can tell by my postings (journaling is good for the soul), and now I am going to do something positive about it. We all have hard times, but, need to push on through and make the best of them. I admire how positive many of you are and I want to be positive too. Since I am currently not working, I am going to re-read and re-train myself if that is possible to focus only on positive outcomes.

If any of you have good stories or ever successfully used visualization to retrain your way of thinking, please do share! And here is to happier posts from me in the future! :)

Dexamethasone = Tremendous Leg Pain

2009-01-22T02:58:00.005-06:00

Hi Blog Friends:

I saw my Neuro Monday. He thinks I may have a mild case of Optic Neuritis. Fine, blurry intermittently - I'm cool with it. We discussed my long term care options now that I am past that flare from the summer (fingers crossed as I have lingering symptoms). I am going to start Copaxone as soon as they get it to me - I bet it takes like a month. However, he tells me it takes 4 to 6 months for the Copaxone to get in there and do it's thing and he'd like to put me on pulse steroids twice a month for 3 months till the Copaxone is working soon. This is wonderful news - this is the plan I had that I wanted to do when I went in there. He looked at me, tested me and agreed I do not need Tysabri yet (about time doctors listen to the patient).

All this to say that yesterday I just took my first pulse dose (1 day supply of really high dexamethasone) and almost immediately my legs were/are in SO SO much pain. I don't understand. The steroids made my leg spasms worse too. I guess I should call him, but, don't want to feel like an idiot. Has this happened to you or anyone else and do you know why? I can't be down and out for several days each month when before I took it I was good (minus the blurry vision). My legs were fine before the steroids. If you know what is happening to me do tell....

And one other comment on my Florida post below (do read) is that Disney World is there! :)

Florida - Oh! I'm SO Excited!!!!

2009-01-19T09:16:00.008-06:00

After my very somber previous post, I've decided to get tough and find something new to pump me up. For some time hubby and I have entertained the idea of moving to Florida. He grew up outside Tampa and I lived in Naples for a few years in the 90's. I loved it, only left due to divorce.

However after reading this article -

http://www.abc.net.au/catalyst/stories/s1048944.htm

The wheels began to turn and I'd like to give myself the best chance with this disease. And yes, heat aggravates my MS. However, MS aside in TN or PA or anywhere else with less sunshine I ever lived, I feel less healthy. It is easier to lead a healthy life in Florida where there is an abundance of seafood, veggies and fruits! And unlimited sunshine. I SO miss that. I'd never left Naples if I didn't get divorced.

So right now I am formulating some ideas about the healthiest way for both me and my husband to live and moving may be one of them. However, I am not ruling out conventional MS treatment either. I like a combo of both myself. So what I need from any of you is - What is the best MS establishment in the state of Florida? Where is it located in Florida? Any Doctor Recommendations? Suggestions where I can find info etc...

I need people who live in Florida with MS to tell me how they deal with the heat during the summer.

Oh...I'm so excited!

Hot or Cold - What's a Girl To Do?

2009-01-13T23:19:00.002-06:00

The past 2 years I've become extremely heat sensitive. I am currently trying to get into a cooling pack program. I had no idea MS could do such a thing. I viewed my mom being "hot" with MS Symptoms every summer, but, until I experienced it I had no idea.

Today, it was in the 20's and my legs felt good. They like the cold, they seem to be less spastic and painful in cold weather. Makes no sense, I would think it would be the opposite. They also like days where I move and sit and not just sit, sit, sit. After my last flare that began last July I am fearful that next summer when the heat hits, so will another flare. This may not be logical. However, when my core body temp rises as it did just a few days ago after cooking all day in a hot kitchen my vision got weird - I can't call it blurry, it was blurry, but also just distorted. It's been okay today the first day in a while that I think so. Again it's freezing here right now and I did not expend much energy today.

So I wonder, how am I suppose to get in great shape and exercise, do yoga etc without getting hot and therefore making my symptoms act up?

Another question is I wonder in the future if it would be wise to move north to have longer winters. Only problem is I REALLY need my sunshine - it effects my mood greatly - One reason I moved from the NE to the SE. And it has helped. However, the shorter winters and more humid summers are also concerning now with the heat issue. What is a girl to do?! Has anyone ever moved for their disease? My soul can be like a gypsy anyway, so I wonder...where is the perfect climate to live...CA right...not sure that's for me...any other ideas?

GOSSIP:

I missed the Golden Globes, however, I am watching Jay Leno and I did not know Toni Collette was British and that she had some facial work done - can you say botox! And Mickey Rourke - uh...his new look...Ewww...

My Brain is Like a Magic 8 Ball

2009-01-03T00:56:00.002-06:00

Did you ever feel like your head was a Magic 8 Ball? Like someone shook it up, asked it a question and you never know the answer that is going to come out of your mouth? The answer may be formed correctly in your head, but, when you speak you move letters around or entire words. You sound like Yoda - Grave danger you are in. Impatient you are. I am going to start just talking like him on purpose at all times. Friends can consider me a Jedi.

Or like me - I was trying to call my husband a pack rat and when I spoke...I called him a Rat Pack. His smart remark was "Oh I'm like Dean, Frank and Sammy". (Ya know the Original Rat Pack) http://en.wikipedia.org/wiki/Rat_Pack

My Cognitive issues leave me feeling very stupid sometimes. I'm either searching the databases of my brain for the correct info and taking longer to speak or I form what I want to say in my mind and something else comes out of my mouth. Forget me playing any kind of trivia game. I did maybe like 1.5 years ago and my friends gave me like 5 minutes to try to think of the answer - I did get it correct - but it took me 5 whole minutes for something that should be off the top of my head.

I've been getting Brain Fog for years and it affected my work, therefore making me more stressed and whala I have more symptoms. Now I have to figure out what I want to do and can do for a career as IT is out...to stressful, always changing, too much stuff to remember. And then there is the problems I am having right now, when it is 2am and I can't shut my brain off, I am physically exhausted but wide awake. So then I will sleep late tomorrow (after drugging myself to sleep) and my whole system remains out of sync. Ugh.

May the Force Be With You. - Yoda (my new grammar coach - lol)

Christmas 2008 and Happy 2009!!

2008-12-31T00:12:00.011-06:00

Star Trek Communicator Ornament for Hubby (the geek)

Santa Gave Daisy 5 new Friends to Play With!

Hello Everyone!

Just a quick note to thank Linda (she commented on my MS Story Part III) for her well wishes. And also to say may you all have a safe and happy New Years Eve and New Year! We are off to visit family over the holiday so this is my last post for the blog year 2008! WOW! :)

In the meantime, here are some fun pictures from Christmas at our house this year!

Santa was GOOD to us!

Yes - she IS the #1 Pet!

Mom, can I tear open these gifts too? Huh Mom? I LOVE Paper!

My Gifts - My Mother In Law thought the Tshirt was funny - me "eh"... Maybe I find it less funny since I know it is true! ;-)

And I feel the need to say:

Thank you God for being with each of us during 2008 and supporting us when we needed you. Looking back on 2008, I noticed for many months only 1 set of footprints in my path of sand. Thank you for carrying me. Even if I didn't see it then, I see it now.

Meet Linda

2008-12-28T03:05:00.003-06:00

I've been thinking about my old Therapist Linda who helped guide me through the early days of my MS diagnosis. (In my story here - I tell how she was like an angel to me and had MS herself)

Well I decided I would google her today to see if I could find anything on her and I just happened to find THIS article. Please read it. She is inspiring!

Posts

2008-12-22T17:13:00.003-06:00

Dear Blog Friends:

I've realized a few things as 2008 comes to an end:

1. There are so many people out there like me with MS and going through the very same struggles and challenges. And I am so thankful for this great support system.

2. The progression of my disease this year with the major flare-up lasting about 4-5 months and left me with the ongoing new symptoms has put me in a very reflective place. And while I focused much of my time on researching more and learning more on new therapies and other options, I stopped living life. I just stopped. Not good.

3. I got scared and depressed and while I am sure I will go through such "seasons" in the future. This Season of being scared and depressed about MS has come to an end. It has too.

4. I am not saying I won't ever post about it. I will. It is a continual day to day struggle we all have and some days I will need to vent. And I appreciate you reading and your support and especially those of you who are great MS patient advocates and keep us up to date on all the latest and greatest stuff.

5. Initially this was going to be just my MS blog. However, I've decided to make it so much more. It's a blog about ME and MS does not have ME - I have MS. I let MS have ME for way to long - I'm progressing to a calmer and better place - free of the constant thoughts of MS.

6. So I am going to go and enjoy the holidays with my new husband and you may see some changes around here before or after the new year. Better, Happier Changes. This blog will be MY blog and yes I have MS - So I will post about it occasionally.

May you all have a very blessed holiday season! :)

Lanette

Christmas Tree Trimming Party

2008-12-07T01:10:00.004-06:00

Tonight we had our Annual Christmas Tree Trimming Party with our Friends. I've been doing this since I moved to TN in 2004 - this was the 5th one! :) Each person who comes to help trim the tree gets dinner and brings a new ornament each year to add to my collection. I love using personal ornaments that mean something to me! Pics Below.

Eating Homemade Lasagna, Garlic Bread and Salad

Kim helping hand out christmas ornaments!

Kim and Paul, Strung in Garland.

Troy, Paul and Bob Decorating the Tree!

Final Product

Hubby being 6' 4" always has the honor of putting the tree topper on the tree.

Anne and Donna Relaxing

Tysabri

2008-11-30T19:37:00.004-06:00

Hi. So here I am back to "real life" - the honeymoon is over and now I have to get back to addressing the biggest topic on my mind - my MS and continuing leg spasicity, leg weakness and pain. Before we went to Jamaica my Neuro had decided that since Rebif didn't work for me I should start Tysabri. WOW, Do you want to try another med first before I try something that has to be infused to me at a Cancer Center? Really?. I didn't argue at the time, I told him I would research it and get back to him. I had more important marriage issues on my mind and my fiance was jobless at that time.

So, today I go through 2 weeks of mail and see that my local cancer center has set me up with my first infusion on December 3rd. WHAT?! I got NO phone call about any of this and December 3rd is THIS Wednesday. I was notified by MAIL?! I pretty much decided that I would be calling them to tell them I haven't even decided if Tysabri was the option I wanted to pursue.

Tonight, my new hubby and I decide to view the Tysabri DVD and see what it says. We did not even get through 1/2 of it and he paused it turned to me and said, Yeah, you're not doing this. I emphatically agreed. For me/us, the risks out weigh the reward. The video even says Tysabri is recommended for those patients who have not found success with one of the other MS Therapies. In other words, use this when all else fails. Well, I haven't even tried ALL the other MS Therapies. Yes Rebif did not work. And Avonex I am allergic too and I've had some really bad site reactions to Copaxone (though not stopping me from taking it), but I've not tried Betaseron yet and may prefer to deal with my Copaxone issues before taking Tysabri.

I'm not saying Tysabri doesn't work, it must do something otherwise why would it be an option. However, they even state in the video that they've only done 2 years of research. 2 years...that's it?! and the "Common" side effects are crazy - Lung Infection, UTI's, Vaginitis, Joint and Extremity Pain, Fatigue etc...So hubby turns to me as says let me get this straight this drug under "common" conditions will give you problems or symptoms you already have and want to get rid of? I know this sounds very negative towards Tysabri. It's not meant to. I was just shocked at how quickly my Neuro went here without even trying something else first and I was also a bit surprised how fast they approved this for use with MS - now for all I know there may have only been 2 year studies on the other therapies too. The difference is the side effects and well there is the risk of PML and Death with Tysabri - can't say I've heard that one before when watching these videos and researching Therapies.

Bottom line is tonight I decided, Tysabri, is not for me....yet.

As they say in Jamaica - Yeah Mon!

2008-11-25T23:47:00.028-06:00

While in Jamaica - Trip Details and Photos
Wedding & Honeymoon - November 2008
Negril, Jamaica

While in Jamaica - I got Married (by a Jamaican minister) - here are a few photos - for more see the Flicker Photos in the sidebar to the Right ===========>

While in Jamaica - I took Wedding Photos after the Ceremony -

And then we napped.....

While in Jamaica - I wore my new husbands hat that was made that day out of Palm. Too bad I don't have a close up of it!

While in Jamaica - We celebrated our Wedding/Vacation with friends. This picture was taken at Rick's Cafe (more info below).

While in Jamaica - I had my picture taken with this Rastafarian. However that pic did not turn out well, but this one did.

While in Jamaica - I saw this sign for the restrooms at Rick's Cafe.... Yeah Mon!

While in Jamaica - We took this picture while sitting around the Bonfire (see pic below) - I can't express how large this Bonfire was - at least 50 chairs around it. And took 2 gallons of gasoline to light.

While in Jamaica - We found the "secret" hammock that was tucked away in the tropical plants and trees on a secluded area of the resort. We spent a few hours here cuddling and relaxing.

While in Jamaica - We went to Rick's Cafe - 1 of the TOP 10 Bars in the WORLD to go to (Because of the view from the cliffs & amazing sunsets) - also 1 of the 1000 places you need to see before your die - at least according to the BOOK. Whew...only 999 to go! hehe

While in Jamaica - I floated in Azure Blue Waters (This was the view from my room) -

While in Jamaica - I had a couples massage in this fabulous Treehouse -

While in Jamaica - I ate their fabulous cuisine -

While in Jamaica - I swam in the cool pretty Pool with a swim up bar and a waterfall -

Wedding

2008-11-23T00:15:00.002-06:00

Hi Everyone - Wedding Pics and details coming soon...here is one of my favorites -

I'm Off!

2008-11-13T23:20:00.002-06:00

I'm done thinking about MS for at least the next 2 weeks! I am off to Jamaica to get married and then to visit family for the Thanksgiving Holiday! Everyone eat lots of Turkey and the fixin's and enjoy the football games - GO EAGLES! :)