Health Update #6

It’s been almost 18 months and even though things are improving, it’s still quite the roller coaster.

I can honestly say that November through now has been the worst I have felt through this entire illness. In early November I had vertigo, and although my visceral therapist was able to treat it that day and it hasn’t returned, I’ve had residual dizziness on and off since. It will hit me throughout the day, but especially in my sleep. And unfortunately, I had an episode of “visual vertigo” while driving on the freeway, where you feel like you’re floating and you’re not in control of the car. This was terrifying and has kept me from driving for the past couple of months.

In early December I started having an increased appetite to the point it felt like I never had any food in my stomach. I’ve done three-day water fasts (no food) and felt a million times better than this. This wasn’t just a feeling of being hungry; it felt like I was never eating. While and after eating, it felt like my stomach was empty and I was never satiated. This has thrown my blood sugar into a tailspin causing me to feel awful nonstop from 4 AM until I go to bed, every day. In addition to that, I’ve had stomach aches, nausea, diarrhea and headaches—all very severe. I figured out that it was a side effect of my thyroid medication. This can happen from the dose being too high or being too sensitive to the medication itself. My doctor repeated labs just four weeks after my last ones where my thyroid and estradiol numbers were perfect. The labs came back showing that not only was my dose not too high, but I’m slightly hypothyroid again and my estradiol had spiked—again.

One of my doctor’s specialties is complicated thyroid and hormone cases, and she has never seen this reaction. Knowing that my thyroid medication dose wasn’t too high, meant that I was sensitive to the medication. I cut my dose in half, but the symptoms were still too intense, so I had to stop the medication altogether. Things got much worse as the medication was leaving my system. I have never been in so much agony in my life. I have had almost 100 symptoms with this illness and the side effects from this medication were worse than anything else I’ve dealt with. I was constantly starving, but I only had four foods I could choose from to increase, so I increased the fat to get the most calories. Unfortunately, I increased my fat so much, I spent the day after my birthday vomiting and in the fetal position in incredible pain. I was up until 3 AM eating a few bites of apple every few minutes to get something in my stomach, only to get a few minutes of relief. There was a lot of crying and begging God for relief. It was one of the darkest and most hopeless nights I’ve had.

It takes six to twelve weeks for the medication to be completely out of your system, but by four to six weeks there should be noticeable relief from these symptoms. I’m in week three and have some periods of relief so far, but it comes in waves—it’s an hour-by-hour thing and still very difficult. One thing that has improved is my dizziness, which seems to have come on after starting thyroid medication. Vestibular issues are very common in MCAS, so it didn’t occur to me (or my doctor) that it could be a side effect of the medication until I stopped taking it. And I’ve had very brief bouts of lightheadedness throughout this condition, so the medication may have just intensified it, not caused it. On the one hand, I’m so grateful that this is all from a medication and not a new symptom from my illness. On the other hand, it’s hard not to be angry that I have felt so terrible this long and lost so much time (and another holiday season on the couch at home), from a medication. But there’s no one to blame or be angry with. This is a common thyroid medication at a standard dose that I tolerated very well ten years ago—and currently tolerated for a few months before these side effects kicked in. The problem is, MCAS can be as unique as a fingerprint to everyone who has it. There are similarities to the illness, but everyone reacts differently to medications, supplements and treatments. What works well for one patient, can be a nightmare for another, and there’s no way to know until you try it.

In all this misery, there has been some good news. I had my big three-month testing last week, and I continue to show improvement. When I started treatment 14 months ago, my symptom score was 124/150. By February, it was in the 50s. It’s now 38/150. If I wasn’t having side effects from the thyroid medication, it would be in the low 20s. Not to mention, the majority of my labs have shown massive improvement and have continued to hold those improvements. I asked my doctor why I don’t feel better, or why don’t I feel like what’s showing on paper. She explained that when we heal from something like this, it starts on the cellular level, then the tissue level, then the organ level, then the all-over level, and sometimes you don’t notice it until it hits the all-over level. She also describes treating chronic illness as having a boat with ten holes in it. Some of the holes are smaller and easier to fill, and some of the holes are much bigger and harder to fill. And even if you’ve filled seven holes in the boat, you’re still sinking, until the final holes are filled.

The most incredible news that came from my testing last week is that I’m no longer showing any allergy or intolerance to ANY food. Yes, NO food, even the highly allergenic ones like gluten, dairy, corn, nuts, soy. NONE. This was completely unexpected and a wonderful surprise to myself and my medical team. Unfortunately, this doesn’t mean I can just start eating with wild abandon. Because my body hasn’t seen new food in almost 18 months, I can still expect some issues when introducing things back in my diet. I did try chicken a month ago and had no symptoms. I also went to Chipotle several weeks ago and got a burrito bowl with rice, beans and chicken only. I had several symptoms for about 90 minutes, but they weren’t too terrible. The irony of this is now that the food problem has improved, my stomach is so bad, I need to wait to try new foods until this has passed. I have also come off another antihistamine and am now down to just two. I feel so fortunate that during this entire illness, the only medication I’ve been on is thyroid and antihistamines. And most of the supplements I’ve been on for the past several months are vitamins and minerals I’m not able to get from my diet, which has prevented me from needing IV therapy.

Another wonderful thing that occurred is I met a woman who fully recovered from MCAS and two other chronic illnesses—POTS and Lyme Disease. She became sick in her thirties after having her third child and was bedridden for ten years. She went to countless doctors, and it wasn’t until she came to my medical team that she was properly diagnosed and able to start healing. She’s 48 years old and looks like she’s in her early thirties. You would never know she was that sick. I gave her my number and asked if we could meet. Several weeks ago, she came to my house because I felt too terrible to go anywhere and she stayed four hours. It was such a comfort—and a relief—to talk to someone who gets it. Every time she talked, it was like hearing myself, and it was so validating. I’ve had a few people suggest I join a support group for MCAS, but I’ve had a strong instinct against it. People getting traditional treatment—even from the top hospitals in the country—are not being told they can fully recover. Instead, they’re being told to avoid all triggers and are on medications with severe side effects. And because MCAS increases the risk for several cancers, some end up battling cancer in addition to this illness.

I’ve had so many moments of doubt throughout this entire process—and the worse I feel, the more doubt I have. If I would have gone with another medical team, I would still be in a dark room, unable to watch TV, use a computer or my phone, be around scents or add new food. Instead, I recovered quickly from my light sensitivity, my EMF sensitivity is about 80 percent better and I’ve been able to try a few new foods, not to mention all the improvements in my other symptoms and my lab work. I do my best to hold on to this when I’m in a difficult spot, like now, but it can be hard.

I can’t stress enough how vulnerable you are when you’re this sick. It’s very difficult to have a lot of advice, opinions and questions coming at you from people who don’t understand the illness, the treatment I’m receiving or see what my life is like on a minute-by-minute basis. I do my best to remind myself it’s because of how much they care about me, and that there is a 100 percent chance I would be doing the same if the situation were reversed. I have told my medical team when others suggest I need to go somewhere else for treatment, and my doctor, who has no ego, tells me it’s because of how much they love me and how concerned they are.

I truly don’t know how I’ve made it this far. MCAS should stand for relentless suffering, because just when you think you’ve passed the worst of it—surprise—there’s more. I am proof God can bring you through the unimaginable—what you didn’t know even existed—and I hope He continues to do so. He has given me an incredible husband who been steadfast in his comfort, support and love for me. God has strengthened me in ways I would have never asked for, but needed, nonetheless. I thought I was strong and resilient before this. I was always so independent and self-reliant. If a door closed, I didn’t look for another door or a window, I just kicked the door until it gave way. I always felt if I needed or wanted something, it was up to me to get it. I rarely asked for help or leaned on others. This has been a big theme in my treatment: not holding on so tight, letting go, trusting the process, being in the present moment, not ruminating over the past or the future, not being fearful but being curious instead, not being so self-reliant and asking for help. These habits have been hardwired for decades and rewiring them takes a lot of patience and practice, which I succeed and fail at daily.

Thank you to everyone who is praying for me. I still need them as God, my medical team and I fill the last holes in this boat, so that I am no longer sinking, but thriving and can fulfill whatever plans God has for me.

“For I know the plans I have for you. They are plans for good, and not for disaster, to give you a future and a hope.” Jeremiah 29:11