Caretaker and Family Expectations

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:
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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.

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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

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

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....

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

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.