it could always be worse

If just one person tells you that they enjoy reading your blog and another asks when you will pick it up again because it was helpful, it makes you think that maybe, when there is “time”, you will post in it again. And then when you realize it’s been more than just one or two people and that it was actually helpful for your own mind and soul, and you seem to have nothing but time, at least every 4 weeks while sitting in an infusion suite, you might as well give it another try.

So much has happened in my life since the last time I posted. Some of it MS related, some way too personal for a blog that isn’t anonymous, but all of it contributing to my feeling distracted and numb. Steady and optimistic, not entirely! I am going to attempt to get this going again, really for my sake more than thinking that anyone else is even paying attention. I am going to attempt to figure out how to post things in separate categories and not just write about MS, because it really is just a part of me, not the whole me. Maybe I can figure out an MS folder or chapter or section within my blog. For now though, I need to make the appearance of my blog a little less chaotic, and man those swirls and colorful designs were really distracting! So here is to a simpler design….

The end of April and most of May was rough. I had a pretty significant relapse of my MS. I had symptoms I hadn’t experienced before and the MS clinic that I go to was undergoing an expansion of their offices, a change of phone systems and new employees that didn’t seem to know the importance of getting MRI’s scheduled as quickly as possible so that treatment could begin. I know that I was probably not alone in my frustration of the system and that this change in how things work at my doctor’s office was not about me, that it wasn’t some personal vendetta created to make my life a little harder, but that, unfortunately is the way I am programmed to think. It’s always about me and it’s always personal! That of course is something I could talk about at another time, in another post, because it’s a significant character defect that I am beginning to address.

Anyway, after a prolonged wait for my MRI I discovered that I didn’t have any new lesions, no active or inflamed lesions but that I had somehow herniated C5-C6. Who knew? I am pretty much just ignoring that. But I did wonder if I didn’t have any new lesions, if nothing was active, then why was I having such an awful relapse? I guess it’s because that is the nature of relapsing-remitting MS. It relapses without warning, and you never know what the next day will be like. I did get my orders to do a 5 day high dose IV steroid infusion, and I made it through 3 days. My body had had enough. After a few days of swelling and heart palpations I started feeling great and now, here I am getting the maintenance infusion of Tysabri. I went to bed last night thinking I was going to postpone it to try to do things I thought were more important but I woke up knowing I had to come, and feeling extremely sorry for myself and honestly a little pathetic, I dragged my ass out of bed and drove the hour and half in the rain. As my time here is ending today, I am grateful for the strength I had to get here, the insurance I have to pay for my treatments and the fact that I may have MS but I have it in a time where there is so much being done as far as medical research and the options for treatment keep growing. It could always be worse.

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About kateshunter

First and foremost, I am a mom to 3 amazing and unique kids. Up until I was diagnosed with RRMS in February of 2007, I worked as a full-time paramedic in some high call volume cities. This took me away from my home for an average of 52 hours a week. I have had a difficult time excepting that my MS will probably keep me from ever returning to a full-time job outside of my home until recently, when I realized that there is a blessing in this. I do have remittance of my MS, and although there are symptoms that stay with me all of the time, I am able to enjoy my family and take better care of myself than would be possible if life was still how it was before that fateful day in 2007. I started a blog that is devoted to my MS struggles and triumphs, focusing on my experiences with Tysabri and documenting my relapses. I mentioned early on that I would love to cure my MS with my vegan diet but have since changed my stance on that. I am managing my MS by eating a whole foods, plant-based diet in addition to getting the best MS care available to me at the MS Clinic at UMass Memorial Medical Center in Worcester, MA. I'm currently enjoying life in my beautiful home in Western MA. with my partner, my two teenage daughters and my teen-age step-son. My daughter Sunny and I are actively spreading the word about the benefits of a whole foods plant-based diet and hoping to turn kids and grown-ups a like on to the fun that can be had at our CSA farm and in our kitchen! Check out our blog at whollyeats.com
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4 Responses to it could always be worse

  1. Anne Forster says:

    Hi Kate,
    It was so nice to hear from you on your blog again…..Even tho I don’t know personally, you are in my thoughts and prayers often…..I get some feedback from your Dad at times, when I inquire about you while playing WS……he is so proud of you !!!!!!……I wish I had some answers or great words of wisdom to offer you, but just know that at some moment when things are not looking good, it may be the very moment I am sending a whisper for “hope and strength” up for you……Anne

  2. nancy says:

    You are quite eloquent. Hang in there, you are doing a great job of holding it together.

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