This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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Week from HELL.........

First off let me say how much I am hating having MS right now. It has been a while since I had an actual MS exasperation and I guess I was due. Before I started the chemo I was having them pretty much every other month. I guess being on chemo and pretty much getting my life back (as much as possible for having the uncertainty that comes with MS) I have been fortunate to not have the dreaded relapses. It has been just short of two years since the last bad one, but this is probably the worse I have had. I suppose I was hopeful that as long as I was on chemo I would be okay. I mean, I know things have been rocky, but it has been because of other things....my asthma, my allergies, having bronchitis and pancreatitis. It seems there is always something.

Last week I was not feeling great. I had my appointment with my neurologist in Seattle and just kind of figured it was my typical reacting to the HOT weather we have had. I mean, it has been in the high 90's for the last few weeks. I suppose it could be worse as it was in the 100's this time last year, but still...90's is more than my body seems to be able to handle. Anyway, more than anything I was just having nausea and migraines. So, Monday we headed back to Seattle for my tests. What should have been an easy trip ended up turning into the nightmare week from hell. Monday afternoon I started to loose feeling in my arms and then in my legs. By the time I was to have my first MRI I had so much numbness in my arms and legs that they were having to help me around and then they decided it would just be better to have me in a wheelchair. I have never had any problems with my MRI's, never been claustrophobic or anything, until this time. I think it was the fact that by the time they got me in there I could not feel my arms, I was so weak that I was not even able to hardly hold the little button thing to call them if needed. Seeing how I was having a hard time they decided to do both MRI's at once. Figured it would be easier on me. And, it probably was. Thing is what should have been a 1 1/2 hour MRI turned into a 4 hour ordeal. Nightmare! They were really great at the hospital though. They were doing their best to keep me comfortable and every so often would come in and check on me because they knew I didn't have the strength in my arms to notify them if something was wrong.

Tuesday brought my echo which as far as I know went okay. I have not gotten any results back, but I have been in contact with doctors everyday this week and if there was something to be worried about, they would have let me know. Tuesday also brought a day of only using a wheelchair. Justin was great to help me around as much as I was able. My legs were still very out of it, really could not walk, but my arms were starting to come back a bit. Still numb, but at least I had some feeling. My neurologist is out of the office for the week and so her ARNP had me do some lab tests to rule out any infection that could possibly cause a flare. No infection though and so she had me come in and see her. Good thing I was in Seattle for some tests, right? So I went to see her and she was great. Her and her nurse were so great to jump all over it and get me some help. She looked me over, did all the exam and gave me the lovely news that yep, I am having an exasperation, and not just any ol' exasperation but a pretty bad one. She gave me a couple injections to help with the nausea and migraine and then shipped me down to the infusion center to start not 3 but 5 days of Solu-Medrol. We tried to get it set up so that I could come home but my local hospital could not get me started until today so they had me start Tuesday there at Swedish, stay an extra night in Seattle so that I could have dose #2 yesterday before we left, and then dose #3 was today back at home.

As if that was not bad enough, my blood sugars (BS) have gone way up thanks to the steroids (at one point yesterday it hit 457) and my blood pressure (BP) have been on its way up as well. We almost did not make it home without having to go into the hospital in Yakima, but the on-call doc walked me through some things so that we could get through to today. This morning brought a trip to the PCP who is managing the BP and BS. I was started on insulin as long as I am on the steroids, which could be who knows how long seeing how my asthma is also acting out and even when I am done with the IV Solu-Medrol I will still have to take 20mg oral prednisone which could also effect my BP & BS. Fortunately he is on top of things and so I am happy about that. We went from there to the hospital for my treatment and finally I am at home where maybe I can finally relax a bit.

Tomorrow is going to be another busy day. My chemo is coming up on Tuesday and so I have all of the prep for that going on as well. I have my 4th treatment at the hospital at 11:30 and then see my Oncologist at 1:30. Saturday I will have my last treatment at the hospital and then hopefully I can have a couple of days to do nothing before my chemo on Tuesday.

So, as you can see this has been the week of MS Hell! I am hoping that it will pass really soon and that this chemo will give my body the boost needed to get back to myself. One can only hope! I hope all of you are doing well and that your MS is leaving you alone, that the heat is not causing you problems and that your week is going much better than mine has been. :) Take care!

6 comments:

Denver Refashionista said...

I am so sorry you are feeling bad. You just helped remind me that I have it good after all. I was feeling sorry for myself about a stupid issue at work aned there you are going to the ER and feeling terrible. You just put my life back in perspective. I hope you feel better soon.

mdmhvonpa said...

Doing my best to send as much 'anti-ms' vibes your way as possible. Prayers going into the mix as well. Mkay? Don't let it get you down.

Diane J Standiford said...

My bad week pales in comparison. Feel better soon. Pa is making me do this, just read for fun---rest up.More cheap meme cruft:

Welcome to the new 2008 edition of getting to know your family and friends. Here is what you are supposed to do, and try not to be lame and spoil the fun. Change all the answers so that they apply to you. Then [send this to a bunch of people you know, INCLUDING the person who sent it to you] post it. Some of you may get this several times; that means you have lots of friends. Have fun and be truthful!

1. What is your occupation right now? Retired.
2. What color are your socks right now? Red and orange stripes.
3. What are you listening to right now? Traffic, people chatting, car door shutting.
4. What was the last thing that you ate? Rice/broccoli mix.
5. Can you drive a stick shift? No
6. Last person you spoke to on the phone? My caregiver.
7. Do you like the person who sent this to you? Would I do this if I didn’t?
8. How old are you today? 51
9. What is your favorite sport to watch on TV? Basketball NCAA
10. What is your favorite drink? Water
11. Have you ever dyed your hair? Nope..
12. Favorite food? Whole wheat cheese pizza.
13. What is the last movie you watched? The Seeker
14. Favorite day of the year? Thanksgiving—4 day holiday
15. How do you vent anger? Depends on who or what angers me.
16. What was your favorite toy as a child? Plastic dogs.
17. What is your favorite season? Fall
18. Cherries or Blueberries? Grapes
19. Do you want your friends to e-mail(blog) you back? Sure.
20. Who is the most likely to respond? Drowsey Monkey
21. Who is least likely to respond? The ones I don’t send this to.
22. Living arrangements? Illegally married to most wonderful person in the world, share a small apt. in Seattle.
23. When was the last time you cried? Yesterday.
24. What is on the floor of your closet? Clothes hamper.
25. Who is the friend you have had the longest {that you are sending to}? Harkoo/Joyce
26. What did you do last night? Wrote for my blog—duh.
27. What are you most afraid of? The Big One: Earthquake
28. Plain, cheese, or spicy hamburgers? Plain
29. Favorite dog breed? Great Dane.
30. Favorite day of the week? Friday
31. What is your favorite number? 31
32. Diamonds or pearls? Bleck ... diamonds.
33. What is your favorite flower? Lilac

Jaime said...

Hi Nadja,
We all have good days and bad days. I hope that your issue at work has been resolved and that you are doing well. Take care!
Jaime

Jaime said...

Mdmhvonpa,
Prayers and good wishes are always appreciated! :) I hope you are doing well.
Jaime

Jaime said...

Diane,
Here we go.....
1. What is your occupation right now? Medical Patient...actually I don't work any more, but I volunteer when I can.
2. What color are your socks right now? I'm not wearing any...it's too hot outside!
3. What are you listening to right now? the TV.
4. What was the last thing that you ate? Crackers.
5. Can you drive a stick shift? Yes, actually my car is a stick only that can be a real pain when my MS is acting up cause then I prefer to not drive....anyone have an automatic they want to sell me?
6. Last person you spoke to on the phone? My mom this morning.
7. Do you like the person who sent this to you? Would I do this if I didn’t? - Diane's answer but seeing how it is such a great answer I'm keeping it!
8. How old are you today? Turned 32 on Friday!
9. What is your favorite sport to watch on TV? Not really big into sports on TV. I do enjoy them live though...I suppose if I had to pick one I would say football.
10. What is your favorite drink? Don't really have one.
11. Have you ever dyed your hair? Yep!
12. Favorite food? I love bread!
13. What is the last movie you watched? Deffinately, Maybe
14. Favorite day of the year? Don't really have one. I do love the holidays though...end of October through the first of January!
15. How do you vent anger? Depends on who or what angers me.
16. What was your favorite toy as a child? I can't remember having a favorite toy.
17. What is your favorite season? Fall! I love the fact that the weather is cooling off and it is just so pretty with the trees changing colors.
18. Cherries or Blueberries? Cherries! I like blueberries, but prefer cherries.
19. Do you want your friends to e-mail(blog) you back? Sure! Why not?
20. Who is the most likely to respond? Not really sure
21. Who is least likely to respond? Not sure
22. Living arrangements? Live with my son, ex-husband (not to worry, he has his own area...my basement), and our dog, Buddy!
23. When was the last time you cried? Friday.
24. What is on the floor of your closet? Shoes.
25. Who is the friend you have had the longest {that you are sending to}? ?
26. What did you do last night? Had my birthday dinner with my family at my parents house. My grandma and uncle were there too!
27. What are you most afraid of? My health deteroriating to the point that I can't be there for my son. Missing out on all the wonerful things of his life.
28. Plain, cheese, or spicy hamburgers? Cheese
29. Favorite dog breed? Don't have a favorite breed, but my favorite dog is our dog Buddy! He is the best. :)
30. Favorite day of the week? Sunday
31. What is your favorite number? 4
32. Diamonds or pearls? Silly questions....hello, Diamonds!
33. What is your favorite flower? hmmm...this one is hard as I love flowers. I do love orchids, anything exotic, really the only one I don't like is carnations, but even carnations are good when in a bouquet!


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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