In Case You Were Wondering

After my last visits to my doctors, I wanted to share the current state of my health and where I am at with everyone. My autoimmune and neurological issues are of the most concern right now and while it is awesome to not be at the doctor multiple times a week, managing my health still requires me to prioritize it over all else and ask for a lot of help.  I want those who read this to understand that although I am doing WAY better than say six months ago (cringe), the diseases I have are chronic and incurable. I am hopeful that there will one day be a cure or that I may achieve the quality of life I once knew, but for now I crave empathy, patience, and the understanding that it is a very real possibility that I could be sick for the rest of my life. I want to celebrate and revel in the fact that I feel good. But hey, I’ll just dive right in and try my best to explain things as well as I can as they are.

Scans of my abdomen showed that while I still have quite a bit of inflammation in my upper urinary tract (kidneys, utterers) causing pain and fatigue, there are no stones or new/growing cysts present at this time. The inflammation does create some difficulty for me when combined with my other pre-existing problems. Since I have a neurogenic bladder (loss of sensation and control due to my faulty nervous system) my risks of infection and fluid retention are increased, especially since I am required to use a catheter four to five times a day to empty my bladder. The other big issue here is how difficult it is for me to intake enough fluids so that I can adequately flush my kidneys. My extremely slow and sometimes non-existent digestive motility make each day a war against nausea, vomiting, early satiety, and an overall loss of appetite. A mostly liquid diet has aided in increasing my weight and nourishment which was a major problem for me over the past year, but this excess amount of fluids fill me up very quickly (cue nausea and vomiting here) making it difficult to hydrate myself on top of my nutrition. This sort of constant state of dehydration causes an increase in my symptoms such as pain, migraines, neuropathy, fatigue and brain fog. It all comes full circle; each problem feeding both off of and to the other.

My chronic migraines, which have been growing increasingly worse and more frequent since November of 2016, have become one of the biggest struggles I am facing right now. I am having an average of 2-4 migraines each week. These debilitating headaches are believed to be caused by vascular instability in the brain (vasodilation and vasoconstriction) and neurological dysfunction which can be triggered by a multitude of things. In the beginning, these headaches would, more often than not, land me in the hospital. Now, after experimenting with multiple types of treatments, I at least have the tools I need to help prevent and handle episodes when they occur. I have changed my lifestyle and learned the signs of early onset so that I can take the appropriate measures to reduce the severity of each attack. Do try to bear with me when I have a migraine. They are excruciating and cause a full range of symptoms that, even with the aid of medications and injections, render me unable to do anything but suffer through.

Mentally, I battle with relapsing major depressive disorder, anxiety and panic disorder. The latter two being my greatest struggles. Trauma, illness, nutritional deficiencies, and botched drug trials have all played their parts. I’ve been taking medication for about two years now, but what has made the biggest difference was deciding to talk to someone. In the fall, I began seeing a therapist and while I didn’t stick with him, I eventually found someone I really mesh with. Having that safe and knowledgeable space to openly talk and work through my experiences has changed my life. I cannot explain the weight that has been lifted off of me. I no longer have to bear it alone. I’ve learned tools and ways to cope and prevent and live. We’ve connected dots and unearthed underlying issues that I would never have found without the help of a professional. Seriously. It’s amazing. And the best part? It’s fun. I enjoy going to see my therapist and I leave feeling more affirmed in myself each and every time.

Most of my other problems are being managed with medications as of now. We have been adjusting and changing these with time as my tolerance increases, benefits decrease, or augmentation occurs. This is especially the case with my essential tremor, insomnia, chronic pain, and my RLS (Restless Leg Syndrome). For these, my treatments are consistently morphing as the diseases themselves change or progress. I’ve had less pain recently so I only take pain medication when I absolutely need it. And let me just remind you that I have been on round-the-clock pain medication for two and a half years. It’s a good feeling – not to need. When it comes to my tremor, which I have had for most of my life, I am coming to terms with its rather quick progression. Luckily, there are lots of treatment options that range from drugs to innovative new brain surgeries that can manage my shake as time goes on. And unfortunately when it comes to my RLS, I am just shit out of luck. I have gone through every approved treatment there is, but the terrible creepy-crawly pain that causes insomnia and involuntary movements has spread from my legs to my entire body. Opioid pain medication helps, but only serves as a mask. Overall, I am grateful that handfuls these tiny pills can help me live a better life. I can honestly say that the only thing I hate about this is how many drugs I am on. Each one has its own unique set of side effects which are bad enough on their own, but combine about 15 of them together and it’s just a big guessing game. About a month ago I began a new drug and awoke from my sleep in the midst of an anaphylactic reaction. It’s fun stuff, I tell you.

I am also STILL awaiting insurance approval to head down to the medical center at University of Texas Southwestern. There I will see the top specialist in an autoimmune disease that affects the autonomic nervous system. We believe this could be the link between my symptoms so that I may finally have an explanation for what is going on with the immune side of things. Having a diagnosis would not only allow me to begin treatments that could improve my quality of life, but also aid with the financial burden of having a disabling disease. Thoughts of raising the funds on my own have been circling in my head lately, but I just sent in my latest appeal to my insurance company so I am keeping my fingers crossed and I hope you will be too.

 

**I am sure there are many things I left out, so I will be editing this post on and off as I think through my situation further. Thanks all.

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When Things Go Right

Let me begin by explaining that my day has been one big grab bag of emotions. I’m talking all the feels. I awoke feeling excessively nervous about the scans and appointment I had later in the afternoon. To remedy this, I made an executive decision to listen to the most emotional playlist possible as I drove to the hospital, working myself into an entirely unnecessary ball of anxiety.

Classic.

These feelings only continued as I laid there within the cold, white washed walls of the hospital dressed in one of the same plainly patterned hospital gowns I’d stripped down into time and time again.
“Breathe in.” … “Hold it.”… “Okay, go ahead and breathe normally again.” …
And repeat. The whole time all I was able to envision was my doctor opening the door to my room and relaying some sort of bad news. Perhaps my surgery had only been temporarily successful. Maybe there was a reason that I had been feeling so off for the past few days. I mean, the other day I slept for like 18 hours and then some. Not so normal. Maybe this kind of thinking is cynical, but after years of receiving anything but good news, it’s what I’d come to expect.

BUT here’s what really happened:

My doctor waltzed into my room grinning and in that moment all of the fear I’d spent the past 24 hours worrying about lifted. He went on to explain that aside from some residual inflammation causing my pain and fatigue, everything looked fine. In fact, it actually looked good and I looked good. I looked healthy. UM, WHAT!? It was at this point that he gave me a big hug and we did a hilarious little dance with some happy tears added in there. What can I say? He’s been in it with me through it all and I’m sure he was just as relieved to be delivering good news as I was to hear it. That’s not to say that I’m not still sick, because I am. My bladder still doesn’t work, my digestive tract is failing, my migraines are among the some of the worst my doctor has seen, and my autonomic nervous system still sucks. My body isn’t “normal” (wow, I hate that word) and it probably won’t be for a long time. Maybe not ever, but for the first time in over two years I am not relying on round-the-clock pain medication to function. For the first time in what feels like for-freaking-ever, I feel like a human being that is present and aware and able and in awe of everything I have been gifted.

Right now I am okay. Actually, I’m good and that, THAT is what matters.

And damn, it’s a monumental feeling.