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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Day 16

Hi everyone! I know it has been a long time since I have updated my blog. Thankfully my mom was able to do some updates while I was in the hospital. So, here's the scoop. I spent 20 days in the hospital, most of which is a blur. I was told by my PA that she came to see me and I have no recollection of her visit. Justin also came for a time and took the caregiver classes....I don't remember him doing that. I'm guessing this will all be a blessing in disguise because from what I hear I was really sick.

Today is my Day 16. I am finding myself to be quite restless and eager to feel better already. I know it will just take time and this is going to be a serious test in patience. I got out of the hospital on Sunday. What a relief that was. I then had my follow-up visit in clinic Monday. I was told I look great and that things are moving right along. The most important thing for me right now is to eat and take in fluids. Eating is tricky because everything tastes like cardboard. I was told my taste buds will get better over time....a couple of weeks probably. In the meantime I am doing my best. They also started me on IV Fluids here at the apartment.

I would be VERY interested in talking to someone who has gone through this and see how long it took them to feel better. I understand I am only at day 16 but I am REALLY ready to feel better already. I am restless, emotional, ready to have my life back! I was told with each week I will feel better so I am curious how long it took the others to feel better, feel like you can just get up and go again, how long it took to eat and taste again.....I have so many questions. So, please if you read this and you have been through this, contact me. :)

So enough about how I am feeling at this moment. I want to give a big Thank You to my family. My family has been amazing. My mom, as you are all aware, kept up my blog but she did so much more. She never left my side. The full 20 days I was in the hospital, she was right there with me. My dad and son came over during the week of transplant, Justin came back and forth. I don't know how lucky I got to have such a wonderful support system. Even now that my mom is back at home working, she calls each day (a couple times even) to see how my day is, to make sure I'm okay. Same with my dad. This week Justin is here with me and he has been great! Doing his best to make sure I'm eating, making sure I have whatever I need to hopefully feel better sooner than later. He works on weekends though so Friday my mom will be back and he will head home, then Monday they will switch again. They have a plan and it seems to work. I can't imagine someone going through all this without such a support system.

In reality at this point I am not sure I would ever do this again. I am having some really mixed emotions. On one hand I am glad I did this because from what I have been told, everyone who has done it has gone into remission, gotten their lives back. My PA just told me the other day she ran into a couple people recently who are about a year or more out and they have NO signs of MS. They have gone back to work full-time, one even had a baby. That is just amazing. I can't wait until that day.....the day where I wake up and have the energy and function to just jump in the shower and want to get going for the day. That will be nice. The thing is that right now (being only day 16) that seems a long way away. So, any prayers for a speedy recovery would be very much appreciated. Until then I just have to remember to take things a day at a time and know that one day soon I will be better than ever!

I hope all of you are doing well. Keep in touch and seriously if you have been through this, contact me! Until next time..........


Jaime said...

Fabulous! Sounds like you are doing great. I hope you feel better soon!!!!

Anonymous said...

thanks Jaime for your update! I will pray for your health and a speedy recovery!
i enjoyed talking with you several weeks ago!
Your friend,

Rami said...

The people I spoke with who have done this said that they felt pretty lousy after getting released - but felt some of that was from withdrawal from steroids. But most said they started feeling good fairly quickly & started walking & getting outside to not feel so cramped in. Hope that helps!

Have Myelin? said...

I admire your courage and look forward to what you say in the days ahead. =)

Gabrielle Turner said...

Hi, I just found your blog.
I'm a HALT-MS patient, too, but now 15 months post-transplant. I had my transplant at MD Anderson in Houston, TX. I'm the first, and so far, only patient to have gone through the transplant here in Texas.
We have a lot in common. I was diagnosed in 2005, just a year after you, and I'm also 33. If you want to email me, please do! My email is gfturner at gmail dot com.
Good luck, and I hope you are feeling good and get to go home soon.

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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 life with MS (among other things).

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