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!

Food Friday - Louisiana Bistreaux

As you may know... or may not know since I wasn't blogging at the time... my sweetheart and I took a trip to New Orleans to welcome in the New Year this year. My friend, Purple Michael (long time blog readers will remember him) now lives there and had extended an invitation for me to visit. Marvin happens to LOVE New Orleans and it had been such a crappy year for the two of us that we really wanted to start the New Year together, doing what we enjoy. So Marvin took a few days off work and we spent a few glorious days soaking up the fabulousness that is New Orleans.

That trip to New Orleans was nothing short of magical for me. I honestly thought that I would never see Michael again. It's so hard for me to travel... I would never attempt to do it by myself. Michael has family in the Atlanta area so he comes back often but not as far north as I live and his family is so large that he really doesn't have time to take the two hour detour to see me. I was so thrilled just to see him ... anything and everything else that happened in New Orleans was just powdered sugar on the beignets.

It was the longest amount of time Marvin and I had ever been together and I'm such an introvert. I worried that I would get grumpy because of pain. I worried that I would drive him crazy on the drive because of my need to pee every hour on the hour. I worried that I would smother him. I mean... it's one thing to have a lady alienating your space two or three days a week but we were going to share a full size bed (instead of his king size) for five days. Despite my concerns that Marvin and I would come back absolutely sick of each other, it was the opposite. We were still singing together at the top of our lungs as we came dragging back into town in the bitter cold... and I was developing a bitter cold of my own.

When I remember that trip, I think of New Orleans as the place where some of the best things in my life collided. My best friend and my boyfriend in the same room... and then you add in the unique flavors of New Orleans. Not just the food... but the music, the spirit, the attitude of the city... history, culture, sights and sounds and smells and... well, the food! The food was incredible! One thing I truly love about Marvin is that HE KNOWS good food! Sorry for all the exclamation points but truly! Man can eat! And he makes sure that I eat. He appreciates my curves so I don't worry about judgement when I reach for that second piece of bread or another bag of pralines. I can be myself. I can eat as much as my belly can handle and we created some really awesome food memories.

ALL OF THAT... to say that our lunch date on Wednesday was a little sprinkle of that New Orleans magic right here in Atlanta (minus Purple Michael). Marvin decided we would take a little road trip to a restaurant called Louisiana Bistreaux. He had been to the location near the Atlanta Airport - about an hour away- but fortunately one had opened up a little more than half an hour away in Decatur so it was really just a little short jaunt. I snapped a few photos of our food so I'll post them here. Here's a link to the restaurant if you'd like to check out the menu... that's one of my favorite things to do - read menus.

 

We started with warm sourdough bread. Bread is so basic but I'm an addict and this bread was really yummy. Then we had fried crawfish tails... perfectly seasoned and just delicious. We split an entree because it was huge... even between the two of us we just managed half of it. We had Crawtator Grouper -  described on the menu as "Grouper crusted with Zapp's crawtator chips in a cajun crawfish cream sauce, served with sautéed spinach and our jalapeno gouda grits." Honestly... I cannot think of a better dish I've ever had. There were so many layers of flavor and just the right amount of spice. I'm a wimp when it comes to heat and I managed just fine. We finished up with bourbon bread pudding which was... incredible! If you're in the Atlanta area, you really owe it to yourself to visit Louisiana Bistreaux. It was not a cheap meal, even with us sharing the appetizer, entree and dessert. Definitely a splurge for us but cheaper than a flight to New Orleans! It would be a fun place to celebrate an event.  Beyond that... the staff were wonderful. Friendly, knowledgeable, efficient... we got there at noon so we beat the lunch rush (I'm guessing, it wasn't very crowded) and our food came out really quickly. Let me know if you check them out... I'd love to hear what your experience was like.

Question and answer time - have you been to New Orleans? We are hoping to go back for Mardi Gras next year. What are your favorite places to eat, see and visit there? I'll try to put together more on our visit, especially about the places we ate in case you'd like to try them. Thanks for reading! Love and hugs, y'all!