My People

My People
My matched set of grandchildren - Oliver and Cosette

Tuesday, February 26, 2019

My Dysautonomia Diagnosis

Oh, hey. Long time, no chat, huh? I have been writing this long post in my head for literally months. Months. It's the story of the last six months or so and the reason that blogging has been difficult for me. I should mention that when I decided that TODAY was the day I was going to type it all in since the house is quiet and I feel chatty... it took me forever to get the laptop booted up and get to the right page. My cat kept trying to bat at my hands every time I would start to touch the computer (Marvin says she's an a**hole... I say, she's just a cat and that's what cats do) until I pulled out the trusty squirt bottle which she is TERRIFIED of. She's still hiding and it's been ten minutes. The laptop worked fine yesterday when Cosy watched YouTube videos on it while she was in the bathtub. Obviously I keep the laptop on a stool, a foot or two away from her and she knows not to touch it but... this thing is probably three years old now and that seems to be the lifespan of electronics these days.

Anyways... I want to be all low key and say, "so I've had some health problems" in a way that is not my usual dramatic self. As is almost always true with me, the closer something hits to my heart, the less likely I am to talk about it to ANYBODY. My family tends to be all stoic and stealth and doesn't talk about health stuff until it absolutely has to be addressed. I'm not wired that way. I NEED to talk about stuff and sort out my feelings and fears and let people know when I need help and... what the future could potentially hold. It's just not easy. That's all I'm saying. But y'all have been around for 14 years as blog readers and as real people in my real life, some of you, for many, many more than that. When people ask me in person I tend to give a very brief summary because... yuick, I don't want to be the lady you don't approach in public because you don't want to hear about all her drama. And I don't want to be the blogger who only whines and moans about stuff but doesn't share the good stuff.

SO... here's my plan... I'm going to tell you about all the not fun stuff first... and then me and Marvin are heading to New Orleans for Mardi Gras and I'm gonna tell you about the good stuff from that trip. Marvin and I still have our lunch dates and do some great eating. I usually post about that on Instagram and then link it to Facebook (which is why it has all the hashtags, trying to increase my Instagram followers because Nana needs some $$). This trip is truly a bucket list trip for us and I'm very, very excited - tempered with a LOT of anxiety.

I'm having to look back at my last post to see where I left off... my blood pressure was going really high, we weren't able to get it under control and I had just had pneumonia. I've had pneumonia again since then, incidentally. But at some point and I don't remember exactly when, my blood pressure started having wild fluctuations. By wild I mean, it could be 160/100 one minute and five minutes later be half of that. Those blood pressure crashes, the dramatically low blood pressure - after years and years of high blood pressure - has led to a diagnosis that explains a lot of what has been happening to me over the past ten years - probably longer.

I want to tell you the details of how much I have been through in sorting out a diagnosis. I have a good cardiologist (who is left handed, a bonus in my book as a left handed person)... and she has worked diligently to sort things out, even though I've had moments where I've said, "no. I can't/won't do that test right now"... because it all became quite overwhelming. And expensive. I can tell you that I did the dreaded sleep study which I REALLY did not want to do and would not have done had it not been for Marvin's encouragement because I hated it. They glue dozens of wires to your scalp. I have a lot of hair. It was ... honestly, it was much better than the last time I had it done and ultimately, the result was that I have a little mild sleep apnea but it's not severe enough to warrant the c-pap and it's definitely not the cause of my high blood pressure. That was a key discovery.

I can also tell you that my heart is structurally good. Amazing... I figured as an obese person that I would be a french fry away from cardiac disaster but there are no problems with my heart other than the fact that it beats too fast (tachycardia). This was another big clue. I also had this cardiac calcium test done that insurance doesn't pay for (yet) but that will eventually, probably, go the way of the mammogram in helping to detect potential heart problems. The medical system that I use does this cardiac calcium thing for a flat fee of $99, including the cost of the doctor who reads it. Makes you really wonder, doesn't it? When the hospital is billing my Medicare, it costs $500 for a urine test but they could do a CT scan of my heart and read the results for less than $100. At any rate... the cardiac calcium score rates your risk for a cardiac event in the near future and I was fine... no concerns at all.

They checked my adrenal glands because they play a big role in the regulation of your blood pressure. There was some test where they scanned the blood vessels in my kidneys, which was rather uncomfortable and came back fine. They scanned the veins in my legs since there's a family history of varicose veins and I was a good candidate (weight wise) for blood clots. No problems.

I had to do this 24 hour urine collection which was a glorious pain in the rear for several reasons:
1. I pee a lot in 24 hours.
2. The pee has to be kept cold.
3. The pee has to be poured into a collection jug and you have to be careful with the transfer.
4. I used the lab at the hospital and to do that you have to register every time you go... when you pick up the jug and when you drop off the jug you go through admissions and get your hospital bracelet... to get a jug and to bring it back. It's insane.
5. They gave me the wrong jug the first time and I had to repeat the test.

If I ever had any doubts that Marvin was a good egg, he proved himself in helping with that pee test. He made sure I did it (the second time when I was absolutely not wanting to do it again) and he fixed up an ice bucket in his bathroom for me so I could collect it there (I pass the hospital on my way to and from his house). It was one of those humbling things that makes dating at 50 so very different from dating at 30. That, and taking my partials out at night. Nothing screams sexy like having half of your teeth in a container on his bathroom sink. I'm just sayin'.

The point is... there have been a lot of tests. I think it's something like $16,000 or more that has been billed to Medicare. There are a lot more tests they can do to get some specifics of things but we ultimately know what we really need to know. I have a disorder... disease called dysautonomia. I don't want to copy and paste from google here because it's too tedious and I would never finish this post if I did but basically what it means is that your body doesn't do the automatic functions that it is supposed to do... things like regulating blood pressure, which is the biggest issue with me. Your heart rate can get really high for no reason. Your body doesn't tolerate heat and cold like it should (I just though it was me getting older and fatter and living in the South that made Summer a living hell for me). A lot of things that have sort of gone under the heading of "unspecified autoimmune disorder" for the past... eight years, I guess?... actually fall under the symptom umbrella of dysautonomia. Chronic fatigue is a big part of it. Chronic pain... although my pain is also due to some other fun things like fibromyalgia and degenerative discs and osteoarthritis... but the ability to tolerate that pain, the exacerbation of it... dysautonomia. The reason for climate change... dysautonomia.

I was just checking to see if you were paying attention. That last sentence is not true. Probably.

There are so many layers of this thing that I don't entirely understand it all yet. I'm still wrapping my head around this. After the New Orleans trip I will probably look into some homeopathic, dietary and behavioral ways to improve my symptoms. It's complicated in that it can be curable, depending on the origin and if it is a symptom of a greater disease... for instance, people who are alcoholics can have dysautonomia as a symptom but if they get sober, it can be allieviated. My cardiologist is slowly changing and rearranging the dosage of my medications to try to reduce the extreme highs and lows in my blood pressure. It's a process. There are more tests they can do to check many other things affected by this but my doctors have already been treating these symptoms in me for years... things like my proclivity to develop pneumonia from the slightest little cold. I know how it feels when it starts to change, my primary care doctor is amazing and knows me (and treats my dad and brother too and was so, soooo kind to my mom when he cared for her) and takes me seriously when I come to him with a problem. #smalltownlife

Not all the bad things that can be associated with this disease are present in everyone who has it but some of them - like brain fog, memory problems, difficulty swallowing, urinary issues - yep. I've got a lot of those. Lots of things. I've been doing research in little bits and just trying to wrap my head around things and I'll get deeper into that as time goes on. My biggest problem is the wild fluctuation in blood pressure. It's scary. It leaves me exhausted. It makes me afraid to do anything and go anywhere. It happened yesterday while Cosy was in the tub which is our hang out and chat time here lately - and I had to text Austin to come up and finish her bath because when my blood pressure starts dropping I have to get horizontal.

It's going to make Mardi Gras very interesting. Actually, calling it Mardi Gras is incorrect. It's carnival season and the last day, Fat Tuesday, is Mardi Gras. We'll be there from Friday through Wednesday so we'll see the last four days, basically. We splurged on grandstand seats for the biggest parades on Mardi Gras day in order to have more control over my surroundings, although there are so many variables that are out of our control. We have a parade schedule and will do the ones we can. Marvin has tickets for concerts on two of the nights but I'm only joining him on one of those. There will probably be other things he does that I don't do, and I'm at peace with that. He is really good at encouraging me to do things when I'm afraid but he's also really good at recognizing when I'm at my limit. He's been very good to me throughout all of this and I know it has been a huuuuuuge pain in the rear for him but he never complains.

Dysautonomia, specifically the blood pressure fluctuations, leaves me exhausted at a level I cannot even begin to explain. It makes it hard for me to think clearly and articulate what I'm thinking. It messes with my vision and just makes it hard for me to focus, in general. That's mainly why I have been posting here and there on Facebook and Instagram but not blogging. I like blogging because it feels more permanent and it's a way for people to see things for months and years after I've written them while other methods of social media are less - researchable. Probably not a word but you get the point. But I wanted to explain this ... what's going on with me... in as much detail as I could so that you would know, if you're curious and so that other people who go to google and type in "fluctuations in blood pressure" like I have so often in the past six months, will maybe find some answers.

I plan to come back and talk about my trip to New Orleans so... stay tuned!

thanks for reading this... it is mostly unedited so forgive anything that is spelled incorrectly or doesn't make sense... love and hugs, y'all!


Dutch said...

I am so sorry to see that your health is bad. I was wondering where you were. It sounds like you have an amazing mn. I can't wait to hear about your trip. How are your grandbabies doing?