That Pesky Little Thing…

Some people call it hope. It’s annoying. I have it right now. Go away little asshole. You’re a tease and a letdown. I’m in the waiting room of a new neurologist’s office (yes, live feed here)… With this lovely hope just sitting on my shoulder for the umpteenth time, whispering, “this is the one, this guy – he’s going to figure it out.” He has great reviews in the local POTS/EDS community and knows a friend of the family. Here goes nothing, again…

The appointment went well. He LISTENED, was thorough, took a lot of notes – no computer screen! Bonus points. He’s ordering an upright MRI – best for showing if my brain herniates anymore when I’m upright and how compressed my brain stem might be. It can also show craniocervical instability – where your skull and neck are too loosely connected basically. He also ordered several labs that I haven’t had before. He does want me to try Cymbalta, an antidepressant, because it can increase blood pressure and some of his POTS patients have found it helpful. I’m at a crossroads. I want to be a good patient and follow his advice but I feel very apprehensive about taking it due to my reaction to Paxil when I first got sick. I asked quite a few fellow POTS patients and the overwhelming response was don’t take it! I have a GI procedure on Friday – okay I was going to be all embarrassed and modest but I’m trying to portray an accurate picture of what dysautonomia patients go through. I’m having my butt scoped! A colonoscopy. Yay. I’m beyond nervous – not exactly about the nether region scoping but the anesthesia and how I’ll feel to take care of the kids afterwards. My oldest son has his first soccer practice tomorrow but I can’t go for fear of pooping my pants (butt inspection prep). I’m so grateful his grandparents are taking him but sad that I won’t get to be there. 

Moving on… I’m beyond overwhelmed, I may have mentioned that in every single blog entry. But I decided to pile a bit more on that… Dysautonomia Awareness Month is in October. Dysautonomia International is encouraging people to create events and seek proclamations from state and local government officials to officially make October Dysautonomia Awareness Month in states and cities to help increase awareness. For example – on October 1st, Niagra Falls is being lit up turquoise (the ribbon color for Dysautonomia). So – I’ve volunteered to seek a proclamation from the Mayor of Phoenix. Times ticking and I’m not sure that it will get accomplished by October, but I’m giving it a go anyways. 

    

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What I Won’t Be 

You know… I want to be calm. I want to be the trusting, loving being that I see in others. So many people are going through just pure shit, more than I am – and yet they’re so gracious. I don’t know how to be that way. I don’t think I can be. I’m not sure if these people have just perfected keeping their anger in or if they feel REAL peace. I’ve never been someone who can just accept and be still and trust. I give it to God too – but it’s usually my middle finger. I scream in his face. I tell him he’s an asshole. I tell him to fuck off. But there he is, still right there. Ridiculously constant. Sometimes that pisses me off more – you’re right THERE! DO SOMETHING! I want to be calm during the storms but I’m not and I don’t think that will ever be me. I’m opinionated and emotional and I will let it show. 

My posts on here don’t often express much other than anger and frustration but I AM grateful. Grateful and hateful all at once. I won’t apologize for the attitude of my blog though. I am grateful that my children are healthy and pretty happy. I am angry that there are sick children fighting for their lives and dying. I am grateful I am here with my babies everyday. I am scared that my illnesses will take me away from them too soon. I am grateful to have a loving family and a husband that works hard to support us. I am angry that much of his country and those in charge don’t give a shit about the sacrifices he makes. I am grateful that I have access to medical care. Yet so pissed that they can’t just figure it the hell out – things are getting worse, please just find a damn answer. I was doing all right for awhile, just accepting the Dysautonomia/POTS and learning to deal with that… I can deal with that. Anytime things get worse and new symptoms appear, I feel like losing it. God, don’t you know I just reached “acceptance”?? I think it’s more the what is it now than the what I know I have that brings me down. One step forward, two steps back. 

Anyways, to those calm, gentle souls out there – I admire you. But I will never be you. I will always be turbulent. 

I Don’t Have a Title

Another let down appointment today… 

But first – I was diagnosed with a hormone imbalance last year (mostly way too much estrogen). On top of suddenly not being able to walk to the mailbox (hey POTS), I felt like I was going through menopause. This is where you probably stop reading if you’re of the male persuasion. Really. Horrible hot flashes, nausea, fits of rage, uncontrollable episodes of crying, really painful ovulation and cysts bursting. I was still nursing my youngest son and my cycle was trying to come back – that’s when the POTS really made it’s presence known too. It didn’t take long to notice that my POTS is worse at certain times of my cycle and that this phenomenon is very common in the POTS community (which is mostly female, unsurprisingly). It definitely seems that hormones have an impact on Dysautonomia/POTS symptoms – I don’t think that the imbalance is my cause, but that it makes my symptoms, and ability to cope with them, much worse. Even women with normal hormone fluctuations notice that their symptoms flare with specific times in their cycle. Anyways, a radiologist thought an ultrasound showed an abnormality in my uterus but a follow-up MRI didn’t reveal anything. So, I went about my business trying to figure out why I couldn’t walk to that damn mailbox anymore. 

I was put on bioidentical progesterone by a wonderful doctor (the first to mention that she thought I had POTS) to try to counteract the excess estrogen. I also started taking calcium d-glucarate – a supplement to help the body eliminate excess estrogen. Many of the physical symptoms I originally had the ultrasound for started to improve and I also didn’t feel like I was riding the crazy train anymore (or at least as often). I’m having trouble trying to decide where to take this entry – partly because my head is pounding with what feels like the beginnings of a migraine and also because I can’t decide if I want to stick to the medical side of things or the emotional side. I don’t think the two can be separated very well in this case though as I strongly believe one is caused by the other.

*I can’t write anymore at the moment… *

 

I think the worst is over. I’m wearing my sunglasses inside but whatever… Light is evil. I hate coming back to an entry the next day and trying to pick it up again. I just feel done with it. 

I had my thyroid removed almost 3 months ago and last month my TSH was 16.8… My surgeon and endocrinologist wanted to keep it around 1 – so it was a tad off. My cycle was two weeks late (messed up thyroid hormone can do that) but my hormone doctor took me off of the progesterone and wanted me to look into it with my new doctor. This all happened the week we were driving 1500 miles. I started having other concerning symptoms so when I saw my new/old primary here and blindsided her with the new and not so improved me… She ordered a pelvic ultrasound. It showed some issues with my uterus, including a “mass”. My appointment yesterday was with a lady doctor to address that. She was awkward and rude, couldn’t explain what my ultrasound results could be, had no interest in why I might have a hormone imbalance, but did offer me two surgical options under general anesthesia. I was told to call her when I made up my mind… And that it was Friday afternoon and I was making her type too much. Her final opinion sealed the deal that she was not the doc for me: “Cancer would be really unlikely, but I guess you could be a zebra.”-Insert shrug and look of disdain here- I THINK THAT HAS BEEN ESTABLISHED. I have some very unhorse-like shit going on. Um, second opinion please. 

 

In medical school, doctors are taught “when you hear hoofbeats, think horses not zebras” to avoid looking for a complex or rare diagnosis first, when something common is more likely to be the problem. Unfortunately… Some of us ARE zebras and many physicians give up if a horse isn’t found. 

Anyways, that’s the latest. I have some “mass” in my uterus and a hormone imbalance caused by something that is attempting to destroy my life and the lives of those around me. This is the emotional side I am hesitant to get into but it is being caused by a medical problem that has been ignored for the last year. The hormones helped some but off of them, I don’t know who the hell I am. I yell, I scream, I throw things… I get so angry over little things that I want to break and destroy everything around me. Ten minutes later I’ll be thrown into a despair and hopelessness so deep that I don’t feel like I can climb out. I cry uncontrollably and then I’m angry again. The roller coaster continues and goes through apathy, where I don’t care about anything, laugh at things that aren’t funny, and loop through some more rage and depression. I’ve always been an emotional person, with a bit of an anger problem, but this isn’t me. Some level of anger, depression, and hopelessness is to be expected with any life changing illness – but this is scary and coincides with certain physical symptoms at specific points in my cycle. It exacerbates my other illnesses. Like I said, the progesterone helped a lot with the emotional and physical issues but I don’t want to go back on it until someone can freaking figure out WHY my hormones are messed up and WHAT the mass in my uterus is. I’m not someone that’s okay with taking medicine just to treat symptoms without knowing the cause of the symptoms. I am sure that if this hormone imbalance can get figured out, SOME of my health issues could be improved – even slightly would be okay. But I don’t want to be scared of myself, frighten my children, and have no idea who I am anymore. So, on to finding a doctor who is interested more in the root cause of this crap than they are in just cutting me open. 

Today is a hard day. Today I just want to sleep, so I don’t think, because I cry when I am awake. I am overwhelmed at everything that’s to come and 99% sure that I cannot handle it. There is an annoying, stubborn 1% that won’t let me just give up. 

That’ll Cost You

It’s been awhile… New symptoms abound! Lots of stressing. We just moved 1500 miles to be closer to family while my husband is moved overseas for two years. That’s SUPER awesome. I’m not dealing with that well and I’m absolutely terrified over how the kids are going to react to this. They usually adjust faster than I do but this just seems different. I don’t think many people understand that I’m sick – I have a chronic illness (or illnesses) and I will never “get well soon”.  I have my good days and bad days but I will never be how I used to. “Invisible illness” is used for a reason. I don’t understand how people don’t see though. I don’t look healthy – just check out old pictures. I can’t stand for long periods of time or do a lot of activity (walking, bending over/crouching down – hard to avoid with munchkins, putting my arms above my head, and driving is hard for me) – so instead of announcing these things to the world, I just sit down a lot and I don’t do activities that will require a lot of spoons. Most days, I struggle to get out of bed. It’s like once I go to sleep, my mind and body forget the state that they’re in and waking up is a bit of a shock. Finally, I force myself to get up, suck it up, and my new, abnormal self slowly settles back in and doesn’t feel quite as overwhelming.  This is where much of my anger and how the hell am I going to do this comes from. Our oldest son is going to start preschool and wants (and needs) to play some sports. This means waking up early and somehow popping out of bed, feeding the kids, getting us ready, and getting to whatever activity. Doesn’t sound like a struggle for most, I suppose, but you don’t get it unless you get it. Maybe it seems like I *complain* a lot but this is my blog and my outlet. More and more, I’ve learned to keep my thoughts, fears, etc. to myself – what’s the point in sharing? I have my handful of people that either understand because they have similar conditions or understand because they know me so well and for that handful, I am more than grateful.  Now about moving… That’s what I came to rant about in the first place. Getting your medical records – WOW! I don’t know how most medical systems are set up but the one that I was in in Washington makes you pay $1.37 per PAGE (with a slight discount after so many pages) for your clinic visit notes – the things your doctor writes about you. So if you’ve had quite a few visits, lucky you. You can get your test results for free and CDs of your MRIs, CTs, and ultrasounds for free… But if you want to see what your doctor has actually said about YOU during appointments? Well, then you get to pony up some big bucks. Don’t worry because it’s free for them to fax the clinic records to another doctor, you just can’t see them. God forbid you want to take charge of your health and make sure that what’s been written is accurate (good chance it’s not if they spend 99% of the appointment staring at the computer). I said screw it, I don’t want to see what most of my physicians there wrote about me… I’ll get angry and stress about making it right, because that’s what I do. 

Silver lining…? I had an appointment today with my “new” primary care doctor here. She had been my provider for many years before I moved away and I like her. She certainly wasn’t expecting me to come in with a huge black binder and a multitude of WTF diagnoses, but she kept up and, without any questions, wrote referrals for all of the specialists I need to see right now: GI, endocrinologist, electrophysiologist, neurologist, and geneticist. She is also willing to write a referral to Mayo clinic here if I decide to go that route. UW in Seattle referred me to Mayo neurology but they weren’t able to even start scheduling appointments until sometime in October (4-6 month wait after that to be seen). My referrals have a few clerical issues that need to be corrected, but after that, hopefully insurance will approve everything. Most are physicians that were highly recommended by other patients through the various online support groups I’m in. Here’s to hoping these specialists can piece it all together.