Category: Cure for MS

Uneven Playing Field

I went to the gym today to do my normal Tuesday/Thursday HIT (high intensity interval) class. I ended up leaving early, after only 20 minutes instead of the full 60 minutes for the class. I told the instructor, “I just can’t do it today.” I then I started to cry.  She asked if I got…

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Chapters

I have always felt that my life has happened in distinct chapters.  From gutting fish in Alaska, to backpacking through Europe – these chapters have molded me and made me who I am. Some are longer than others, and I certainly enjoy some a lot more than others, but all have imprinted on me. The…

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First World Problems

A while ago, my husband used the phrase, “first world problems.” I think it is related to a phrase often used by our neighbors, “problems of the rich.” They both mean the same thing. How can we feel bad that we don’t have enough money for the perfect (insert your want here), when we have…

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Was it Worth it?

A question that many people ask me after I’ve had the HSCT is ‘was it worth it?’ I always tell them that I cannot decide that for them. It depends on your personal situation, and when I did it I had no other choice. I was feeling like I was not living anyway, so if…

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Roller Coaster

I go through a lot of ups and downs these days. The phrase about transplant recovery being a roller coaster is no joke! I also struggle with depression, due to the MS, and exacerbated by my new life of disability, recovery, and minimal energy. Instead of complaining about how crappy I’ve been feeling lately, I…

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Balance

Balance is an important term for people with MS for many reasons. There is the physical balance that you lose which makes is hard to run, walk, and do yoga. For instance, I stopped running outside a while ago, when it got to the point that I fell every time. But luckily, because of the…

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More Adjustment

  https://www.facebook.com/Multiple-Sclerosis-Awareness-1573486702872865/       I saw this ad for a sweatshirt on Multiple Sclerosis Awareness Facebook page. This all resonated with me deeply. The line that got me the most was, “I dream of a person I was.” I say this to myself in some form or another on a daily basis. “I wish…

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Recovery Continues

I have been very unhappy with how my body performs lately. A lot of it is the recovery from the HSCT, and also the toll MS has taken on my body. But it is also that I have been having a hard time figuring out how to exercise in a way that works for me…

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The Need for Complete Honesty

I am once again finding the need to rein myself back in for a reality check. I seem to have a personality that makes it impossible to be completely honest with others or myself. When asked how I’m doing, I always respond, ‘great!’ ‘I am so much better, I am so blessed, I am so…

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Decision Revision

So maybe it’s time to make a new decision. Yesterday felt good for the first two hours of the day, and then I had to take a three-hour nap before I picked up my daughter from preschool. I then went to my son’s end of year party, my daughter’s pre-school graduation, and my three kids…

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Recovered! Or Close Anyway. . .

I am only two days away from my one-year-birthday, and I am finally starting to feel normal. It is the most amazing feeling! When it has been years since I’ve felt OK, it feels miraculous to feel normal. I am not always depressed and tired. I am not going to bed after I get my…

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Almost There

I am sick again, but it’s different this time. I am not knocked out of all my energy and it’s just a cold. This is really good news for me. I was really sad when I realized I had it, the snot, the sneezing, all the normal stuff. However after being awake for a couple…

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Remarkably Normal

I have been super fortunate in the last week. 11 months post transplant and I’m finally feeling good. I felt good when I first left the hospital, great even. I wanted to walk a lot and just enjoy feeling good. Then as time went by, and I got off the steroids and other meds that…

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Is Recovery Taking Every Piece of Energy I Have?

It is a mixed question, or rather a mixed answer, about how much energy it really takes to recover from myeloablative HSTC. Sometimes the answer is no. Like today luckily. I’m picking up my parents to come visit the kids and me for four days and we are super excited. I was able to get…

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Recovery

I am very aware that I have not posted in a long time, and I apologize for that! This recovery from the HSCT is harder than it was initially. I am gettting knocked down by colds all the time, fatigue had moved in for good, and I even spent a full week in bed when…

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Amazing News!!!

Breaking news in Norway. HSCT now considered a part of the National treatment plan for MSBreaking news in Norway. This is amazing!  I am so elated for all of those in Norway this will help, but also very sad that I know the US will be far behind because we are such a litigious country!…

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The Good Stuff

I have recently posted a couple of depressing blogs. At least they seem so to others that love me. I want to make it clear that I do not find them depressing. I use this blog to be able to say the feelings I am having that I do not readily tell people who ask…

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The Questions Don’t Stop

I am watching this show, Six Feet Under, which has an amazing story line and character development. One of the brothers has found out he has something wrong with his brain that can cause an embolism or stroke at any time and he doesn’t know what to do. I can so intimately relate to this…

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Accepting My Current State of Existance

Something I am getting better at, which is necessary for life in general and not just recovery, is accepting whatever my current state of existence is. Whether I feel like I’m in shape, excessively tired, or productive or not, I need to be able to accept where I am in life. Not just where I…

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Remembering to Appreciate the Little Things

Today I am happy. I was feeling really unhealthy, like my body couldn’t move easily. It is hard to explain, but after not doing any real workouts for a week, I felt like I was sick again, and I couldn’t handle it. I was happy to have my husband back, which is helpful for my…

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The Ugly Truth of Recovery

I feel ugly and weak. It makes no since that I would harbor these ugly faults when I have had such a positive transformation. I should not be so vain that looking like a man with super short hair still bothers me. At least it is growing back. I should not be so proud that…

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A Bad Day With an Upside

For a while now I have been having a feeling of being unsettled. Like I was waiting for something but I did not know what I was waiting for. Part of it is obvious. I’m waiting to be completely healed. That will be a very long time, which I am very aware of, so I…

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Recovery – Day # 97

I am very aware that I tend to sugar coat things and make it seem like everything is fine and I’m always doing great, so today I am going to talk about the other side of it. Then with that all out of the way, I’m going to relax and enjoy the gift of being…

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Writing Again

Hello, followers!  I’m back with a new purpose for this blog.  I have gone through the HSCT (Hematopoietic Stem Cell Transplant) process and am on day 98 of recovery. I did the full myeloablative approach, so recovery will take a full year, and even longer for all my cells that were lost due to MS attacks…

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To All My Followers

I have now moved up to Seattle for three months to start my treatment.  My blog up to this point has had two main purposes: to help myself figure out what’s really going on in my head, and to motivate others to turn their thoughts from the negative to the positive.  I will not take…

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The Miracle on 94th Avenue

I was in my bed writing, when my husband pointed out that I had yet to blog about me being accepted into Seattle at the last minute.  More accurately, the insurance changed their policy to cover my treatment, I was accepted into their study long ago.  Just day’s before we transferred the money to Italy,…

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Unwanted Guests

With MS, it is not just how you feel day to day that is questionable, but it’s hour to hour that really gets me.  I can go from 1 to 10, in terms of pain, in less than an hour.  And Pain’s BFF, Fatigue, is never left behind.  As I can no longer predict my…

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4:00 AM and Spinning

I have always had a bit of insomnia.  I recall times in high school where I would stay up all night watching TV because I couldn’t sleep, then sneak back into my bedroom before my Dad got up so he wouldn’t make me stay home.  I hated missing school.  If I missed a class, I…

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Six Weeks Away, and Falling Apart

I am now just a six short weeks from leaving for Italy.  Up until now, I have been very brave about the whole treatment.  I know it’s going to be hard and I will go through a lot of pain and discomfort, but I know I have to do it.  I have to do it…

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Back with a plan. . .

I have been not posting for a few months now, per my lawyers advice, while we were waiting for a final rejection from the insurance company.   Well, we were trying to wait for them to cover it, but we ended up getting a final rejection.  Now that that’s over, I can freely write about whatever…

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The Gifts We Take for Granted

I’ve had this blog in my head for over a week now, and I’ve been putting it off because I’ve been doing exactly what I’m blogging about right now, enjoying the gift of time. I have quit the waiting game.  This is not to say I know when or where I’ll be treated, yet.  I’m…

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Hurry Up and Wait

With the help of my family, I have decided to get an HSCT, or stem cell transplant.  This is a process that has been practiced for many years for blood related cancers and for MS, but the FDA only approves it for the treatment of cancer.  What this means for MS patients is that insurance…

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The Beginning of the Next Chapter?

Something big is about to happen and I can feel it running through my body like a surge.  It is scary, exciting, exhilarating, and impossible to think about all at once.  I am driving home for the weekend after my first round of testing, and will be back on Monday for more.   And once it…

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