You Are Here

by | Mar 16, 2023 | Uncategorized

When I say ‘You,’ I really mean ‘Me.’ It seems a little ironic that I have dipped so low, I mean lower than I have ever been since getting MS 16 years ago! I suppose that it is always darker before it’s light, and blah, blah, blah! All I can tell you is that this is NOT enjoyable!

Let me qualify; I mean, I haven’t written in many, many months. It hasn’t all been bad. In fact, it’s been pretty good up until about the beginning of January. Mostly life has just been moving along as it should. I went back to work in August and quickly realized that I could only handle about 3-4 hours of work per day. I am currently working from home and throwing in an afternoon nap, almost daily. Now, is this because of the stem cell transplant, or because I am getting older?! It’s hard to say, but I do like those naps! Throughout the fall, I continued to walk most days. I have also continued with physical therapy. I think that I’m doing pretty well until I go to PT and discover that I am something of a hot mess. Big surprise! My body hasn’t been moving properly for quite a few years. It’s not like I just get the transplant, snap my fingers, and poof! Everything is back to ‘normal.’ Normal! Like that’s a word that has EVER been used in my family!

I really do wonder if the higher EDSS score that you have, the more difficult the recovery will be. It just seems that the people that I talk to that had EDSS scores of 3.5 or lower, seem to bounce right back to running and scores as low as one or two. I went in with a 6.5. I have to remind myself that HSCT has an 85% probability of halting the disease. Regression is just a bonus for some. I’m still holding out hope to maybe run again some day, but I think that it will most likely just be something that I dream about. I do keep dreaming about it! I mean, like, once a week, dreaming about running! Honestly, it’s safe to say that anyone that didn’t know me and saw me (trying) walking, would wonder how many bottles of wine I had been drinking!

Another fun thing that has happened is menopause! I was dancing around the edge but since HSCT BAM! Super fun! That’s all I will say about that. But before I don’t say anything about that, I’ll tell you that I have gained 15 pounds in the last 2.5 months! None of my pants fit and I hate shopping! People have been telling me that I was too thin and I look healthier now, but c’mon! My pants! Don’t! Fit! None of them! I even went to put on my fat pants(don’t act like you don’t know what I’m talking about!) and I couldn’t get them over my hips!

I have been having horrid joint pain, mostly in my knees and hips. I am seeing a naturopath now. She did bloodwork and tested me for many things. Let me qualify ‘bloodwork.’ I have had a lot of blood drawn over the last 16 years. When I went to get this run of tests done and saw all of the vials, and just thought that the tech keeps all the vials in this particular container and just pulls a few out. Nope!  All for me! I finally asked if she planned on leaving me any blood! Everything came back normal. No thyroid problems, no arthritis, no nothing. That is great, but, what is going on! Is it menopause? Is it HSCT? Is it both? Probably that. I probably just need to be patient…….

TL; DR Menopause is ridiculous! I’m slowly getting better!

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