Wow, so much time has passed since I've made an update that I'm not really sure were to begin. I guess not much has really happened, other than being constantly sick, but I'll sketch out the basics. There are a few things that are new, and one surprising bit of information.
Thanks to everyone who has emailed me to check on me in the absence of a blog update. I have also really enjoyed getting to know several of you who have emailed to tell me your own stories with Tumefactive MS. I have been shocked to realize just how rare this disease is, and how dramatically it has impacted those who have it. In almost every case I am told that the Tumefactive MS patient seems to be the only one in their area, that they have not heard of any other cases, and that their doctors seem to be playing a little bit of guess work. Sadly, I have not heard from one Tumefactive MS patient with a simple story. They are all stories of extreme suffering, stress, complicated diagnoses, and complex decisions about biopsies and medications. It honestly hurts my heart to hear these stories, but it also gives me a strong desire to help spread the word about this disease, and to find a way to connect these patients to one another so we can all figure this out together. I'm giving that some thought, so stay tuned, and definitely keep sharing.
One thing I have learned from talking to so many other Tumefactive MS patients is that most of them have had a good response to steroids. Guess that answers my question as to whether or not I am just "special" or if Tumefactive MS is "special" when it comes to being steroid resistant. Guess it's me. I'm the "special" one. Big surprise, right?? Haha. Sadly, I have met one other friend with a tumefactive lesion that has been enhancing for several months, like mine. Looks like they might go for the biopsy, though I need to check in and see what she has decided. Nothing about this is easy, that's for sure.
As for my recent health, it's been pretty up and down. Sadly the ups are short lived, but I am grateful that they come at all!! I was pretty dramatically sick through all of March, April, and most of May. Things started to even out in late may/june, and i even took a trip with my sister Mariah to NJ where we had some great days with two of my cousins, seeing some of the sites in NY and DC. It was actually a really great experience, it taught me alot about putting aside my physical discomforts and focusing on enjoying life. Sort of a chronic-illness bootcamp! Haha. It was a little disheartening spending whole days sleeping, starting every day late and ending early, but we did have alot of laughs, and I will always treasure the time I got to spend with my sister Mariah. She is the one and only reason I went. There were other things I would have liked to be considerations. But weighing out the physical cost and the potential consequences, she really was the only consideration. I love that girl so much. Being sick draws life into such a sharp perspective, and there is nothing more important to me that taking every opportunity to be with my family. When I am with my nieces and nephews, or my little sisters, I try to think of nothing but them. It honestly gives me strength in ways I can't explain. There is something about love that is more powerful than pain, more powerful that suffering, and that can sometimes put our minds and bodies into autopilot so that our hearts can access whatever energy we may have within us.
Sadly, but not surprisingly, I had a pretty rough patch once I got home from the trip. I immediately caught some sort of horrible flu. And unfortunately, I am stilllll sick. It's been almost five weeks now. I have been nauseous, achy, exhausted, can't think straight, can't sleep, losing weight for no reason. Some of those are nothing new, as I've been sick pretty constantly since this all started. But it's felt a little extreme, and the nausea and weight loss are new. I have asked my neurologist if it's normal with MS to feel sick this often, and he said that with normal MS, it's not. (Tumefactive MS is kind of a wild card) It can be normal to feel horrible all the time, and fatigued all the time, and to have regular bouts with being sick....but not this regularly. And that was all. He basically told me he wants me off the Avonex and onto the more extreme Tysabri immediately. And that was that. Apparently that's going to be our saving grace and fix everything...lol...I certainly hope that's true! He really has been insistent about it from the beginning. The insurance is the only reason we took a detour.
Fortunately for my health and my sanity, I have a PCP who has more time for the smaller details (which are HUGE details for me, since I'm the one feeling sick every day) and he ran a bunch of tests to see if there might be something else going on here. The first thing he found was an unexplained nodule in my lungs....that was a bit of a panic for me...and then about a week later my blood tests revealed a positive Valley Fever test. It would have been nice if those two discoveries had been found in reverse, or together, but at least the blood test explains the nodule. My doctor ordered meds to treat the Valley Fever, and he is sending me to a specialist next week for closer follow up. The goal is, of course, to keep this contained and shut it down as quickly as possible. Valley Fever is often very manageable, but it can also get completely out of control and turn into a chronic illness that causes significant damage. So here I am, "special" again. I have my own unique brand of MS, and I have Valley Fever. What next? Shall we go back to Rocky Mountain Spotted Fever and Typhus?
For any of you who knew me back in September 2011, when I first got sick....docs thought I had Valley Fever first. But then a highly sensitive titer test and my chest xray were negative, so we were back to not knowing what was making me sick. Everyone kept saying it still could be valley fever and that valley fever could last weeks and months. Then I was diagnosed with Rocky Mountain Spotted fever and Typhus, and then I got sicker, couldn't walk, landed in the hospital, found a massive lesion in my head, spinal tap showed markers for MS or Lymphoma, and the story goes on from there. Being that it's almost a year later, and its close to the end of summer, etc....this honestly feels a little too eerie, a little close to home to be diagnosed with Valley Fever now. I am a pretty rational person, but there is this tiny little, irrational part of me that is panicking, thinking the whole circus is about to be replayed. Obviously that isn't true, but it doesn't stop me from feeling that way at times! When my doctor called, I almost wanted to tell him there was no way I could have valley fever, and it must be a false positive. Oh wait. I did tell my doctor there was no way I could have valley fever, and asked if he was sure I should be taking a medication to treat something I couldn't have! He said that the blood test was definitely positive, and with the chest xray also being positive, this was out of his hands, and I needed to take the treatment and see the specialist. Shut down. Haha, at least I trust him, and the logical part of me knows he is making the right call. I am just tired of all these things I can't control. If they come back and tell me I have rocky mountain spotted fever, I'm out! I'm going to Europe, and I may or may not come back!
Haha, in other news, I recently had a new MRI done. I am still waiting on clearer results, but I will definitely post them when I get them!
Thanks to everyone for reading! I posted a picture from my trip below. I'll try to share a few more soon. I was having technical difficulties earlier, but this time I'll try to post them in the photos tab....I know, there isn't one now, but there will be!
Love and prayers to those of you going through hard things yourselves.
Mandy
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