It’s Been a While…

My Hair is Growing!!!

Yes! I am back. Did you miss me?
These past few months have been really busy and now that school started again…WOW…busy, busy, busy! So, I am finally here to put in an update. Sorry it has been so long!

Since my last post, I have had a few crazy things happen, so let’s start by telling you that our insurance company FINALLY paid a portion of the bill! Yes! It was a huge struggle to get this accomplished and let me just say that whenever you deal with an insurance company, take notes. Get the name of the person you are talking to, write it down along with the date and your conversation. I did this and my wonderful husband took this documentation along with other documents about the transplant to the “big guy” at his work and a couple of weeks later we were told that the transplant would be paid for at the percentage that transplants are normally covered. This being said, I want to point out that although a good amount of the transplant was covered; the whole procedure was not. So, we still had to pay a good amount and we are still paying post transplant costs as well. This includes my physical therapy, the blood work I had done, the follow up MRI’s, my stay in Chicago for my check-ups every six months, and any other transplant costs after the procedure. We initially were able to put down a large sum of money that came from our retirement, my parents, and my grandpa. Once we received the money back, it totalled everything my parents and grandpa gave and they were given the money back. This is why the money that was raised through fundraising and generous donations is very important. We would really be in a bad spot if it were not for all of you. Thank you so very much!

Another crazy thing is when I got sick with an ear infection at the beginning of July. Getting sick is really tough on my body! I know my immune system is messed up still, but, wow did I feel it for the whole month. Not only did I get sick, but that really affected my already weakened body. That is why it’s incredibly important to sanitize like crazy! The heat coupled with my ear infection, caused my walking to get bad. It was so frustrated with all the work I put into walking. I have to point out though that I have found the year before my 1 year stem cell birthday to be quite frustrating, but awesome as well. I have such ups and downs, it can be exhausting! Lets just say that my worst day post transplant is better than my worst day before transplant. While my best days post transplant are even better than my best days before transplant if that makes any sense to you.

Some of the things that I have found to be changed include:
~Heat intolerance has lessened significantly after a shower (before, it was so bad that I would have to hold the walls to get to the couch).
~Heat intolerance when outside in 90 plus degree weather, is still a bit of a struggle.
~No more Lhermitte’s Sign-that crazy zappy feeling that I would get whenever I put my head down.
~My vision is better! I am able to see pretty far, like I used to.
~My bladder function is back to normal…sorry if this is TMI, but that was a problem for me and I am doing great in that area.
~The numbness in my legs is slowly going away. Let’s just say that both of my leg were numb from the knee down, now only the bottoms of my feet and my toes are still numb.
~My finger numbness has lessened. It is there, but not as bad as before.
~I can walk further and for longer periods of time. Not great for Jim because this means more shopping!!!

Some things that I am working on:
~Eliminating stress in my life. I know this is practically impossible, but trying to stay calm is my goal. I guess if everyone understands that stress induces my symptoms, they will keep it away from me. That is one thing that was recommended by Dr. Burt’s team…Keep away from stress!!!!
~Walking! Yes, walking further is better and lasting longer is great; but, I am now starting to trip on my foot when walking…yeah, that is weird. I just want everyone to know who sees me that…no, I am not drunk…my foot is just in the way right now! I think my leg is getting better and my toes don’t understand where to go. I always say that things get worse before they get better so on to better things!
~ Physical therapy: I have been working with my therapist for a long time now. We both think that creating an exercise schedule for home is a great option. I also got a membership to the gym where they have a pool to do exercises as well. I love the pool! I can kick and walk so well. At first, I would get out of the pool and just be a big ball of jello! Now, I can move around better than before. I also find that if I sit for a certain amount of time my legs get stiff, so having a plan for everyday sounds great to me! My therapist checked my strength and flexibility when I first came in, I was flexible (like Elastigirl from The Incredibles…), but my strength was just not there. Especially in my right leg (my bad leg). He tested my strength a couple of weeks ago (a few months after my initial test) and we found that my strength is a lot better! He was so happy to see that and so was I! Like I said in my previous post…Baby Steps…

So, needess to say, things are going pretty good. I cannot stress enough how physical therapy is really important for success. I also need to say that some people say this is a cure…well, if stopping my symptoms in their tracks is considered a cure…then that is where I am! Now, I need to reverse them if I can. If not, well, thank heavens for this transplant and the fact that I was lucky to take part in it. If I didn’t you would have seen me in a wheelchair by now…I guarantee it.

Until we meet again…hopefully sooner than later…
Oh, and by the way, comments and questions are more than welcome.

4 Responses to “It’s Been a While…”

  1. Marc says:

    “I just want everyone to know who sees me that…no, I am not drunk…my foot is just in the way right now!”

    I totally understand that, I just went to a meeting in Grand Rapids, and my friends truck broke down, it was raining, and we hadn’t had dinner yet, so we walked, 3/4 of a mile, to Arby’s. I had to take several breaks, keeping my balance was difficult because there weren’t sidewalks the entire way there, and honestly, some of the way was pretty rough terrain, and I think between the humidity, the rain, and the heat (which really wasn’t all that bad, just bad enough) my body started to give out, and by the time we got to Arby’s, I looked like I was really drunk. Fortunately, Tom, my friend I was with, explained that I have MS, and that we just walked quite a distance in rough terrain to get there. They were pretty understanding about the whole thing.

    And, as much as I dislike it, yes, Physical Training is really important! (I swear they try to come up with ways to torchure me though!)

    Marc Coppins

  2. Al Escudero says:

    Lisa,

    Congrats on your improving baby steps. When I saw you and Jim last months at the hospital in Chicago during my HSCT you are really looking good, these ‘baby steps’ are really coming together very well from my perspective. Sort of like my baby stem cells came together to get me discharged on Day +10. It takes a lot of patience; I already want my balance, bladder, L arm & leg weakness / numbness, etc. to improve ‘yesterday’ but patience is a virtue as they say. Stopping the MS progression is obviously goal #1 and the baby steps will carry us thru to the improvements with time. Keep pushing along, you have many people (like me) supporting you & cheering you on!!

    Finally, thank you again for visiting me with Jim at the hospital during my HSCT – you guys are totally awesome and it really meant a lot to me!! You guys totally rock!

    God bless.

    Al Escudero (a/k/a the ‘conehead’)

  3. Lisa, Thank you so much for telling me about your website. I love it, and I love hearing about your progress, your story, and your courage and determination to try something new and fight for it. I know two people I can share this information with, who might benefit from it. I am sure there are many more. Stephanie Somers

  4. Deanna Maitland(Geo's.mom perBrian) says:

    Hi I’m glad to read on well u are doing.My oldest son has very progressive MS.My grnd-dau. is having a little set back now only hers is different then urs &Robt’s.She has more bladder & bowel control problems w/few leg.She is being treated in Ind.W/MI.I discovered not many drs.are well informed in MS.The ones that are are impossible to get in to see the Neurolagist(?) I mean fam.drs.are many that do not understand MS which I feel is ashamed for many pts. Your in my prayers & it sounds like ur making progress.
    Bless ur husb.& kids as I know its rough also on them

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