I know I haven't posted in a couple of months. I also haven't been very communicative in general. I guess it's just that I know people like to hear good news. It's been a challenging time - some good times, but a whole lot of bad times. I'm dealing with quite a few issues every day, and coping as best as I can.
I'm having a lot of migraines. Almost half of my days are migraine days right now. I've already flunked out of a headache clinic (we tried every treatment available), so I have only Maxalt (a triptan) to treat my migraines. The Maxalt generally does help. I certainly can't skip the Maxalt too often, because the migraine blows up and becomes unmanageable if I don't take the Maxalt as early as possible. Unfortunately, it makes me feel very drugged. It also makes me incredibly itchy (possibly a mast cell reaction). So, I have to take 2 Benadryl to be able to tolerate the Maxalt. So, migraine days are generally lost days. Additionally, if I have more than three migraine days in a row, I just have to tough it out to avoid rebound migraines from the Maxalt use. (Today is a day three migraine, so I'm really hoping for a break tomorrow!)
Another issue that's been challenging is my allergy (suspected mast cell) issues. The main symptoms are itching and swelling. But sometimes, the itching is so bad that it keeps me from sleeping at night, and the lack of restorative sleep triggers my dysautonomia severely. I'm also reacting more strongly to all of my allergic triggers. Unfortunately, this seems to include my sweet puppy, Charlie. Plenty of other symptoms could be related to a mast cell activation disease, but for now, I'm just calling these allergies. Benadryl is becoming my best friend. I'm trying to avoid foods that are naturally high in histamine to lower my overall histamine load, but I can't tell if it's helping. (This includes fermented foods, strawberries, leftover meats, and a bunch of other foods.)
Challenge #3: My digestive tract is a mess. My main symptom is severe bloating and pain. My chronic constipation is improved, and I'm no longer dependent on Miralax. But the bloating and associated pain are still so severe. I've already tried things like fiber supplements, digestive enzymes, and probiotics, but they don't seem to do anything. So, I started a food and symptom diary to try to figure out what is making me sick. Unfortunately, it seems to be a lot of foods. So far, rice, almond milk, potatoes, and chicken seem to be my safest foods. I initially tried a diet I've tried in the past, the Eating for IBS diet, which involves eliminating foods that are high in insoluble fiber, egg yolks, dairy, red meat, and fatty foods. This hasn't been enough. Next, I have eliminated foods that are high in FODMAPs. If you don't know about FODMAPs, there is lots of information out there. It is a scientifically proven approach to treating IBS. FODMAPs include foods like: apples, onion, garlic, honey, agave, wheat, dairy, legumes, pears, cruciferous vegetables, artificial sweeteners, sugar alcohols, and a lot of other foods. They are foods that contain high levels of short-chain carbohydrates, like lactose, fructose, fructans, galactans, and polyols. I had a lot of hope for this diet, and gave it a really solid try. Unfortunately for me, FODMAPs elimination has not been enough to eliminate my symptoms. I really cannot tolerate any fruits or vegetables right now. The pain is too severe. I can sometimes handle half a banana or some cooked spinach (ew!). My diet is one of constant experimentation. I don't do well with smoothies, which is really disappointing. But I'm considering trying juicing. It isn't as healthy as smoothies, but all of the hard-to-digest fiber is removed from the food, and you still get the other vitamins and nutrients. I have no idea if this will work. Some days, it really doesn't matter what I eat. Even when I eat my safest diet, I can still have symptoms. I wish I could just stop eating. On the other hand, it's hard not to think: if even this bland, boring, generally not-too-healthy food is making me sick, why don't I just eat whatever I want?? But then, I'm reminded of past bowel obstructions, and I know I'm doing better than I would be if I were eating dairy, salads, and red meat. IBS symptoms can be caused by EDS. Malabsorption and motility issues are common with EDS or dysautonomia. But my motility seems to be okay if I avoid the worst dietary offenders.
I have a lot of other symptoms to manage on a daily basis. But these are the biggest ones right now. I'm also just trying to cope emotionally with my body's limitations. Many days are really so miserable that I just have to cope with my physical state. I often have widespread pain, nausea, shortness of breath, and a really intense feeling like having the flu (hard to describe). During these times, I just can't get comfortable, so I curl up in bed, put on some Netflix, and just wait for it to ease up. I missed out on my hubby's 30th birthday festivities due to this sickness. I hate it. I hate how much I have to miss out on. I miss my puppy. I miss my independence. I miss earning my own money. I just hate it. I hate being so self-involved due to this illness, and I wish I could be a better spouse, family member, and friend. I think we all thought I would be doing better by now.
The good news: many days, the sickness eases up in the evening, and I am able to enjoy myself a bit. I exercise every night, recumbent bike-riding and light toning exercises. I think it helps my POTS, but I still get out of breath just walking to the bathroom most mornings. I do believe that I have a successful bony fusion. I don't feel like I need to wear my collar, and I never need traction. My neck still gets tired and my muscles seize up with tension every day. I haven't had my post-op scans yet. Communication with TCI has been pretty bad. But I will find a way to get them done this calendar year. Like I said, I do believe that I am finally fully fused this time. My range of motion is actually reduced this time! I still use my bone stimulator every day, just to be sure.
Clearly, the fusion doesn't resolve everything. But I still expect that recovery from the trauma of surgery and the anesthesia will continue up to two years after surgery. I know that sounds crazy, but my body really does take a long time to recover.
The question that often comes up: what do you do all day? I have a lot of trouble answering this one. Basically, I just survive, and hope for better. I keep working toward a better life, even if it seems like I'm not getting anywhere.
I will be happy when I can live closer to my family. My life will be more meaningful if I can spend more time with my loved ones, the ones that support me through all of these years of illness. I am so very lucky to have these people, along with my amazingly supportive husband, in my life. In the meantime, I'll be here...just trying to do what's best for my body, and maintaining the hope that it may still get better.
