Neurological Symptoms Getting Worse

Things haven’t been good, and between the livedo reticularis getting seriously bad, and my neurological symptoms flaring horribly, I know that my Behcet’s is winning. I’ve been on a steroid taper, but there just doesn’t seem to be much relief. I went to neurology today, and we’re increasing my seizure medication and my neuropathy medication, but he really doesn’t have a ton of faith that it will help my symptoms, including my shakes and ataxia. It could help other issues, but there really isn’t one drug to help my specific set of neurological symptoms.

We don’t know what is happening in my brain/spine/nerves to cause my shaking, ataxia, and hyperactive reflexes. I present a lot like an MS patient, but I don’t have MS. Also, because the symptoms get worse with flares, and do improve slightly during high immune suppressing treatments, it makes logical sense that it’s related to my Behcet’s. With my GI system crashing though, there is a question of how to adequately treat most of my symptoms…while also having to embrace the reality that I’m sadly unique in how my neurological symptoms present.

Today the doctor mentioned IVIG, but we aren’t there yet. I’ll bring it up with my rheumatologist next week, just to see if that combined with other therapy options is an idea. I’ve also read some things about plasmapheresis, though again, it would be experimental because Behcet’s is so rare. If I had to do more chemotherapy to live independently, then obviously I would, but I’m desperate to try other options first. Some of the things I want may seem odd to someone who isn’t chronically ill, but for me they’re everything.

First and foremost, I want a port. I know there are a lot of risks, and the risks do scare me, but because I’m so hard to stick, if we were to take on another IV treatment, I would want to have an easy access situation. The other benefit of a port, is we could talk about hooking me up to IV fluids, and even IV medications. With my poor GI motility, it just makes sense for me to bypass my stomach for a lot of things. My seizure meds, and my immune suppressing drugs, as well as my nausea medications, are the first things I think of. Also, I have to choose between eating or drinking, which sucks. It is so painful to do either, that I’ve been giving up on food so I can drink enough fluids. Doctors are still saying I’m dehydrated though! This has gone on for years, with doctors always insisting I need to drink more water, but my body just can’t handle more water orally. IV fluids at home would really benefit me, even if we just did them every other day.

The second thing is the wheelchair, and while I’m disappointed at needing one, I appreciate that it will be a tool for me to use to become more independent. At this point, they have approved me, so I’m just waiting for the company to get in touch, and to work on what kind I’ll be getting and when it’ll be arriving. I’m still really embarrassed to need one, but I’ve fallen several times in the last few weeks, and with my diet so limited, the weakness is even more pronounced. We know from the way my body has declined in the past, that my neurological symptoms are only going to get worse. It doesn’t make sense for me to put pride over my well being. If I wait until I’m fully unable to walk, then ask for a wheelchair, I’m going to be stuck waiting for however long it takes.

The third thing is nutritional supplementation. I refuse to get an NJ or an NG tube placed.  I would likely need an NJ as my stomach is the issue, and they’d want to bypass my stomach. My gag reflex is just too strong, and living with a tube from my nose into my intestines would not be something I could handle. I also don’t feel like I’m sick enough to warrant a surgical feeding tube, and wouldn’t want one anyhow. I can still intake things orally, and I feel like if we got the right supplements I could get by. I’ve been choking down Boost, and I can tolerate potatoes, PBJ (sometimes), and sorbet. My issue is I’m not getting enough protein, or other nutrients, on my limited diet. Today I had a cup of sorbet, and that was it until 6 when I forced myself to eat some potatoes. If you’re wondering, it hurts, and I’m miserable, but at least I kept it down thus far.

I need a support network. I need people who get what I’m going through, and don’t judge me for being negative. I had a friend who was really close to me, who had multiple medical conditions as well, so I’ve been venting to her about my health lately. She is also someone I go to when it comes to how to date with chronic illnesses, and how to talk about health issues with someone you care about. Unfortunately we’re not friends anymore. She felt as though I was becoming wrapped up in my illness and letting it define me, and that my casual dating situation with the guy I’ve been seeing was unhealthy for me. Yes, I want to find someone to seriously date, but at this point I don’t have the energy to put into dating. (Not to mention I can’t eat much, and alcohol is a big fat no at this stage.) Yes, I have other positive things going on in my life, but everything has changed course because of my illness.

If you’re reading this, and you have a chronic illness, don’t feel bad about feeling bad! When you find yourself in a rut because your disease has taken over, it’s okay to process it for as long as it takes. In my case, I began losing more and more things that I’d discovered about myself in the last two years. After my marriage ended, and I was free from an abusive situation, I really started to find who I was as a person. Then, my disease progressed, and I began to lose things I’d started to enjoy. That process is ongoing, which means my frustration and sadness is ongoing. I don’t dwell on it publicly but I do vent to friends because I need help finding me. Yes, finding yourself is a personal process, but I think being sick it’s important to have people in your corner to help you. If I didn’t talk about my health, I can honestly say I would get lost in suicidal thoughts.

Really? Yes, really. There have been points in this journey where I’ve just wanted to die, and I think it’s something anyone with a chronic illness deals with. Whether or not you’re truly suicidal, or just feeling overwhelmed and the thoughts crosses your mind, it’s a real issue that requires real help. I am on anti-depressants, and I’m setting up more counseling sessions. I don’t want to actually die, so I need to make sure my mental health is being handled by professionals.

Please seek professional help or go to your nearest emergency room if you are feeling suicidal. Various countries and states have numbers you can call if you need someone to talk to. Call 1-800-273-8255 in the U.S. for the National Suicide Hotline. You can also chat anonymously. 

So that’s an update on my situation. My brain is starting to become worthless, so I’m off for now. Please address issues you have with your illness, and know you aren’t alone if you’re depressed or anxious. We can get through it, you can get through it. Your life (my life) OUR LIVES, are worth fighting for.

Also the only thing that’s working on my nausea is medical marijuana. That makes the part-time job hunt harder because I can’t take anything that they drug test for. At the end of the day, I can’t work if I’m up all night dry heaving, so it’s worth it for me to forgo those positions in lieu of the medical treatment that actually works for me.

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Neurological Symptoms Getting Worse

3 thoughts on “Neurological Symptoms Getting Worse

  1. The first part of this post made my heart sink because it seems like your body is giving you everything it’s got right now. I have a port and definitely recommend it! And I really needed to read your motivational message right now. Thank you for being the voice I needed, and for not being afraid to approach a difficult and often sensitive subject.

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    1. I felt like I definitely needed to reach out and include that, because being sick a lot can make it hard to make and keep friendships. I’ve definitely decided to get more into my blog, and I think I’ll start Vlogging once I have the space and privacy to do it. I’m also starting an Instagram dedicated to my health issues because I want to make something positive of all of these difficulties. I’m so happy that I was able to be the voice you needed, and thank you for the information on the port. I’m so afraid of the idea (mostly because my dad and grandma had bad clotting issues).

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      1. You’re definitely right about the friendship thing! It’s good that the blog gives you a focus and an outlet, and I look forward to seeing you vlogging! Do you think you’ll have started in time to do vlogmas?

        I’ve had several PICC lines before and this isn’t my first port. While I got clots around the ends of the lines, there are drugs that they use to solve that when it happens and if you explain your concerns I’m sure your team will help you make the right choice. My biggest concern with a port or any long line is infection. If it isn’t accessed properly or the correct precautions aren’t taken, then infection has a hotline directly into the blood. That happened pretty quickly with my last port but that was because it hadn’t been accessed properly. If someone tries to access it with a needle that isn’t specifically designed for use with a port (in my case the doctors got a butterfly needle and bent it to use it in the port) then the diaphragm of the port gets damaged and harbours infection and things. Also they didn’t clean my skin properly before changing the port needle, and it was continually accessed because of the infusions I was on. The simple way to stop that is to have a port needle with you if you know you’re going to need one (I carry one all the time due to the nature of my health issues) and make sure whoever accesses it cleans the area properly and knows what they are doing.

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