The heartbreak of autoimmune disease

Recently I have sent out a survey to people who have autoimmune disease. If you haven’t seen it or responded yet, and you would like to, the link is here  

Some of the responses I received are absolutely heartbreaking, I was sobbing reading them. And sadly, most are all too familiar to my own experiences with autoimmune disease.

So many people struggling with these diseases, medications that do little to nothing to ease their pain, or cause side effects that are worse than the disease they are supposed to be treating!

Every single American respondent said that the cost of healthcare is breaking them, or has broken them, they’re now close to bankruptcy, and on top of that, some are unable to work because of their disease.

Some are parents, or grandparents, unable to go out and play with their kids or grandkids. All but one respondent commented how their perfect day would include just a simple pain free walk with their family. That’s all. We don’t want much. Just to be pain free, and to be able to spend some time with our families.

Why is it that conventional medicine has been unable to find treatments for autoimmune disease that actually *help*? The medications given only treat the symptoms, they don’t treat the underlying cause of the disease. Often times, they cause such horrible side effects that people have to discontinue use, because the drugs are worse than the disease they started with! I myself have refused prescriptions on several occasions after I learned the possible side effects. I always figured there has to be a better way. Why is the treatment so much worse than what it’s treating? I mean really, the side effects of some of these drugs are “possible tuberculosis, cancer, and even death!” SERIOUSLY?!

I struggled for decades with migraines, infertility, debilitating PMS pain, chronic fatigue, fibromyalgia, digestion problems, bloating, noxious gas, and chronic constipation that led to bleeding from my anus. YES BLEEDING FROM MY ANUS! And through all that, I was never tested for autoimmune disease. Not until I was 40, and a routine annual physical that included a thyroid workup determined there was something wrong there. Though the nurse practitioner got the dx wrong. She said I was “hypo” thyroid, because I had no TSH. That’s right, she said hypo, because there was NO TSH. Completely bass-ackards. Low TSH means HYPERthyroid, because TSH means thyroid stimulating hormone. If your thyroid is already whacked out in hyperdrive, it doesn’t need to be stimulated! I had ZERO TSH.

Three months later when I finally got an appointment with the endocrinologist (I was living in North Carolina at the time), he diagnosed Grave’s disease. I don’t remember what my antibodies numbers were at, but he was quite concerned and wanted to irradiate me right then and there. I refused and asked for other options. We went with methimazole, and he said he’d give it a while to see if the numbers normalize. I had an appointment for 6 weeks hence, which my employer at the time refused to give me time off for! So, I ended up going 12 weeks, and then I was HYPO because my dose was a bit too high.  Seriously, my employer refused my request for time off for my doctor appointment! How the fuck they get away with that is beyond me, but I started looking for a new job right about then.

I gained about 25 pounds in the first 2 or 3 months of being on methimazole, but my thyroid levels were normalizing, and after 12 weeks and a dose adjustment, the antibody levels were going down slightly as well. I continued to refuse radioactive iodine to kill my thyroid. I figured I’d already lost enough organs, I didn’t want to get rid of another. (remember my previous post about celiac induced infertility). 

After 18 months on methimazole, my Grave’s disease went into remission! HUZZAH! And I didn’t have to ablate my thyroid gland, it just stopped going haywire. I do continue to worry that it will reoccur, even though it’s been almost 9 years now! How many years can you be in remission before you say you don’t have the disease? The possibility is always there that it could return, but I continue to do everything I possibly can to prevent it! I was lucky that it went into remission. Statistics are only about 25% of people do go into remission with anti-thyroid meds alone. I wonder how many more would though, if doctors weren’t so keen on giving patients RAI right out of the gate?

The day that he told me I was in remission, I wasn’t entirely overjoyed. You’d think I would be, because I wouldn’t have to take those horrible drugs anymore, and I should have been feeling better. But in fact, I wasn’t. Sure, I wasn’t constantly sweating anymore. I could go walk my dogs without gasping for air (and I had 2 giant dogs at the time, Saint Bernards, one was 150 pounds, the other 200 pounds!) and I could sleep again, and eat like a normal person. But I felt like shit. And I was full of shit and noxious gas! The endocrinologist said “well I dunno, I fixed your Grave’s disease, I’m done with you.” Yep, nice eh?

When I went to the nurse practitioner, or the family doctor, they said “eat more whole wheat”. Of course, that just made it worse. The rest of this part of my story you know, how I self diagnosed celiac disease, and fought until a doctor would actually test me so that I could have science prove it. I was convinced, but other people weren’t. My husband-at-the-time included. 

We shouldn’t have to do that. We shouldn’t have to fight for tests. We shouldn’t have to suffer. We shouldn’t have to go to 20 doctors and become human pincushions before we find a diagnosis. We shouldn’t have to argue with our spouses that YES I REALLY AM SICK! No, I’m not faking it for attention, No, I don’t have the energy to clean the house, and cook dinner, and do the laundry AND entertain 350 pounds of dog! 

Our only options are to take the drugs they give us, or to take our health into our own hands. That’s what I did. When I *needed* medication, I took it of course. Had I not taken methimazole to normalize my thyroid, it could well have killed me with a thyroid storm and/or sudden heart attack. But I wasn’t about to ablate it, nor was I going to take immunosuppressants. My immune system may be completely out of whack, but it still does serve a purpose and I need it, spank you berry fudge!

I made my way to food as medicine, and found that it really does work. There are dozens of clinical trials going on right now, using food as medicine for anything from PCOS to Multiple Sclerosis, to Alzheimer’s. This is why I went to school to become a health coach. Because health coaches are needed. And because people need to know their options, because doctors don’t know how powerful food and lifestyle changes can be! I know. Because I’ve lived it. I AM living it. And I will live longer, and happier, and certainly less miserably that I would have, had I continued to believe doctors when they told me that food has nothing to do with our health. Say what now?

My mission is to help people with autoimmune disease get their lives back, so they can go for a walk with their family, and hike with their dog, without having to worry about being laid up in bed for a day or two afterward. I lead my clients to find their own path to recovery. How about you?

If you would like some more information on how I healed myself of autoimmune pain, and find out about my coaching programs, Contact Me today. Let’s set up a time to talk about it. How much is your life and your health worth to you?

 

 

 

Comments