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Where have I been? (The darkest year of my life)
October 9, 2015
So, for those of you following this blog, you probably noticed there hasn't been much to follow lately. I was so gung ho in the beginning, posting a few projects a week, now there are several months in between posts. Well, life just hasn't been going in my favor the past year. I've been pretty quiet about it, but I feel like I'm finally ready to talk. It's long - so bear with me while I vent.
Last year about this time I found out I was pregnant. Exciting, overwhelming... insert emotion here. Turns out this was to be the most miserable year of my life.
6 weeks in the nausea hit, and it hit hard. It wasn't normal at all. It was 24 hours a day, it never quit. Nothing helped. And no one helped (the doctors they give you though Tricare Prime are a joke, they have 3 days to get back to you - what the hell good does that do - they aren't open evenings, weekends, or pretty much whenever you really need them.) It started when I was making Paleo Chicken Pot Pie for the hubby. Almost puked into the pot. Paleo was not working for me. When I actually felt well enought for food, I wanted grilled cheese. Don't really know where that came from, and frozen grapes. And this is what I lived off of for the next month.
My first visit to the OB was the most terrifying experience of my life. And it didn't help that I had a doc (Yes, Tricare, again) that had no bedside manner. First of all, she didn't give a crap about my pelvic pain, said it was an ovarian cyst. Well, I know where my ovaries are, and that was not my ovary. Then she looked at the ultrasound, and said to us, "I don't know what I am looking at, there are lots of weird dots. I have never seen this before. I think you should come back next week. Oh, and there is no heartbeat."
Excuse me? I was terrified and upset, and angry. My first visit to the OB ever, and you tell me you have never seen this before? And to top it off it was the day before Thanksgiving. We hadn't told family yet, so I spent the entire weekend running into the bathroom to cry and pretending nothing was wrong, all while trying to hide the increasing nausea.
So, I went back to the OB, twice week for a month, and heard the same thing each time, "This doesn't look right," or something similar and equally harsh/cold. What are they doing? Do they expect that one day it will just look right again? I was livid. I was being tortured, they wanted me to miscarry naturally I guess, but after a month, that obviously wasn't happening. So I was stuck feeling terrible, still with the nausea, and now gaining weight, all for nothing. And the poor treatment by my doctors was really messing with my head. I had a dead baby inside me, and no one cared enough about me to take it out. I don't know who they were caring about - mostly themselves I guess - but it wasn't me. That month was the darkest month of my life. Or so I thought.
5 weeks into all this I finally convinced them to do the surgery - a D&C. During my final visit to the OB, they said "things looks different then they had the previous weeks" and recommended the emergency surgery. No shit. Really?
Luckily I hadn't eaten anything that morning (got there at 5 AM for the ultrasound), so we scheduled the surgery for that afternoon. Well, 5 PM I was out finally of my surgery. Still nothing to eat. I never want to relive that experience, and so I will just skip over that part. And again, the most terrible doctors you could possibly have the misfortune of getting stuck with. I swore I wound never go back to Fort Belvoir, even if I was dying.
The next few days were filled with the most excruciating pain and cramping of my life. I couldn't even stand up after peeing, my bladder cramped so bad I could barely move. So after a few days of this, I called the OB clinic's emergency line. Had to leave a message! They called me back 3 days later. By this time I was on my way to CT, my mom had to fly down to VA to drive me because I was in no shape to be behind the wheel. Did I mention it was 2 days before Christmas? And the pain got worse, so Christmas Eve was spent in the ER.
In the following months, some other odd pains and strange symptoms started to arise. I developed the most intense stabbing pain in my uterus, 20 lbs of weight gain in 2 weeks, and a chronic headache. I still remember when the headache started, Feb 1. I was in the ER, again. And at Fort Belvoir, BAD mistake. They pumped me full of Benedryl (not for headaches, idiots) and sent me home. Actually, the IV fell out of my vein, pumped my arm up into the size of a softball, and scared the crap out of me. I got yelled at when I asked what meds they were giving me, and the Benedryl gave me vertigo so bad I was walking into walls for the next 3 days. I asked for a referal to Endocrinology because of the weight gain. They said no, they referred me to Neurology instead.
Spent the weekend in the hospital after being admitted by neurology. Had an MRI and lumbar puncture. They found nothing wrong with me and no reason for the headache. I came home and my entire left leg went numb and hot from the procedure. It was terrible for a week, then tapered off a bit. 8 months later, I still feel the pain and heat daily behind my left knee.
My primary care doctor follow-up proved to be just as ridiculous. She said the vertigo must be from a sinus infection, and tried to give me nose spray. And then she prescribed me muscle relaxers for the headache. In total, she prescribed me 21 different meds for the headache, and guess what, 8 months later and I still have the damn headache.
As for the weight gain, I asked her to run a thyroid panel. She refused. I had to go back a different day and get a different doctor to run them.
So it turns out my Thyroid was out of whack. TSH went from 1.6 before the miscarraige, or more specifically the missed miscarraige, to 3.8. FT3 and FT4 were extremely low. They said I was normal. Daily debilitating pain is aparently normal. They also happened to mention that my HCG had not gone back down to zero (and didn't for 6 months). I asked to get a referal to an Endocrinologist. She said no, again. So I got a referal to OB/GYN, again.
Back at the OB/GYN - said there is no way it was my thyroid, sent me to a pain clinic.
Before finally getting to see an Endo, (took 7 tries), I've been to a Reproductive clinic, Hematology/Oncology, Allergy, Neurology, Dermatology, and several trips to the ER. All I got was a chronic fatigue diagnosis, fibromyalsia diagnosis, and several doctors that laughed at me, overdosed, insulted and ignored me, and gave me the incorrect meds. I was told the pelvic pain I was STILL having was a cyst while in the ER (again), and was told to go home. I didn't have one. These people are complete idiots.
And then at Endo, they pumped me so full of thyroid drugs I went from Hypothyroid to Hyperthyroid in a month, and so now my thyroid is basically not working.
So, this Pain Clinic - best decision I could have made. They tried eveything from electric stim to acupuncture. Went two days a week (3 hour commute) for a few months. Nothing worked, but my Osteopath (DO) there said something that stuck with me. She said that if this is Thyroid I would never get the care I needed within the tricare system, and that I needed to go outside the Military Hospitals to get the correct treatment. Best advice ever (until it came time for Tricare to cover my claims.)
My DO/Accupuncturist reffered me to a Metabolic Dr, outside the Tricare network (I never got the proper referral paperwork from the pain clinic, so Tricare is covering NOTHING (they covered $75 so far out of almost $10,000)). By this time, I had a bunch of new symptoms, all of which didn't look like they fit together: left pelvic pain (still), metallic taste in mouth, swollen lymph nodes, sinus issues, itchy skin, rashes, acne, swelling and inflamation. And an incredible brain fog and sleeping problems. And the burning feeling behind my left knee.
This Dr was a godsend. Never told me I was crazy, knew exactly what was wrong in just a few tests (test that I'm still paying for), but I finally, some answers.
All of my symptoms fit into a very obvious category for him, Mold toxicity. So I did a mold test in the house. Came back 85th percentile for relative moldiness. That's super high. I also did some blood tests that prove I have HLA-DR gene mutation that means I have a genetic sensitivty to mold. It's in the autoimmune section of your DNA. Sounds super rare, right? 1 in 4 peope have this. I also have a MTHFR gene mutation (yes, I still laugh everytime I see this tyed out) - how I understand it, makes mold patients worse because your body doesn't detox properly.
This autoimmine condition has been causing the inflammation - chronic inflammatory response syndrome (CIRS), chronic swollen lymph nodes and other antoimmune flareups. I can't have gluten anymore, I can't have sugar, alcohol, vinegar. It probably caused my miscarraige (that or the Folic Acid I was prescribed when I was pregnant that people with MTHFR should NEVER take - it's practically poison). I probably won't be able to get pregnant until the chronic swelling is gone.
I also have brain damage. Swelling on the brain and decreased MSH has been causing my brain fog, concentration issues and trouble sleeping. I also have a slew of inflammatory markers, hormones, and blood tests that are out of whack: VIP (Vasoactive Intestinal Polypeptide), MSH (Melanocyte Stimulating Hormone), TGF Beta-1 (Transforming Growth Factor Beta-1), C4a, VEGF, and on and on. My antidiuretic hormone (ADH) is very low, that's why I gained 20 lbs practically overnight. It's all fluid, fluid on my joints, fluid on my brain, causing the fibromyalsia pain and the chronic headaches.
A 12 step process is what I'm told I need to get rid of all this. Seems simple? It's not. It's 12 months long, and expensive. Each month focuses on fixing one of the blood tests thats messed up.
Step 1 - get rid of the mold. Well, the insurance company is refusing to accept my test results, and therefore NOTHING is being done. The landlord agreed to have HVAC cleaned at least (which actually made me feel worse). There was mold all over the cooling unit. Had never been cleaned in 12 years. I was given recommendations to live in a tent or get rid of everything I own because tiny mold spores can live on paper and wood (hello, graphic designer - my office is nothing but paper).
Step 2 - Take Cholestyromine - a bile binder. It's supossed to bind with the toxins in my body and help flush them out. Been on this 2 months now.
Before I could go to step 3 I had to pass the vision test. Did you know mold can cause your vision to be messed up because of swelling in your eyes? I passed last week, so my exposure is less (maybe the hvac cleaning was sucessful).
Step 3 - Treatment of MARCoNS (Multiple Antibiotic Resistant Coagulase Negative Staphylococcus). It colonizes in the deep nasal aerobic spaces of people with CIRS. This bacteria forms biofilms and releases biotoxins that can cleave MSH (melanocyte stimulating hormone), an anti-inflammatory neuropeptide.
I just got my test results this week - possitive for MARCoNS that are resistant to 5 antibiotics. I have to have a special compounded drug made for me to treat, and a nebulizer to administer the drug. And of course insurance isn't covering any of it. What do they cover? Anything? Unless I am a stage 4 cancer patient I guess I am shit out of luck.
So, in the next two weeks there will be a lot of praying... hoping that I finally start to see some results from this MARCoNS treatment. I need this to work, I need to get better. I don't even want to think about the possibility that this doesn't work.
As for steps 4-12, it also involoves a special anti-mold diet called no-amalose, where I can't have gluten, sugar, anything fermented, and anything that sits on a shelf and can get moldy, no coffee, tea, grains, rice, no leftovers, etc. I'll have to stay on this diet until all the steps are completed. More importantly, I will have to stay stress free (yeah right) and motivated, while keeping up with the financial burdens of this extensive treatment.
Calling this the darkest year of my life is truly an understatement. I completely shut out everyone, because, how do you explain all of this without hyperventilating (I loose my breath just going up the stairs.) I even had a friend think my lack of communication was because I was pregnant and sent me a pregnancy gift. Talk about dark - that was unbareable... torture.
It has been so difficult communicating this with my friends and family, and most just don't understand. How could they? I don't look sick. Chronic Illness is a hidden illness, no one would know I am sick (other than the constant circles under my eyes from inflammation). I have recieved recommendations like "just move out," or "just get over it." I don't even know how to respond to that. Moving while feeling this miserable would not be healthy, plus who pays for that? I sure as hell should not have to. I can't take the time off to find a clean place to live and plan a move. I spend several hours everyday just taking mediacations, calling doctors, fighting with the insurance company, calling lawyers, etc.
For a long time I thought everyone was right, I thought I was going crazy, but the recent labs and bloodwork have given me some motivation to keep pushing. "If you're going through hell, keep on going"... you know the song.