Each topic would be lengthy, so I am trying to decide which way to go. Hhhmm, I think I'll get a little more descriptive with my conditions. In the past, I have shied away from giving out the full ball of wax. It is just too complicated, with overlapping issues, and issues that complicate others.
I became ill approximately seven years ago. It began with bi-lateral Trigeminal Neuralgia. Such a nightmare...just horrible. I had a six month long attack, which is unusually long. I have been in remission for several years, with flickers of it coming through every now and then. This evolved in to MS like symptoms. Many of my neurologists, and two MS specialists, over the years were sure that I had MS as well. It often coexists with TN. It can take as long as twenty years to get a firm diagnosis of MS. Honestly, I wouldn't be surprised if I had it and wouldn't be surprised if I did not. In the scheme of things, it really doesn't matter at this point. Too many other things have come in to play.
I have other autoimmune issues, but will save that for another time.
So, back to POTS. This began approximately 2 1/2 years ago. Of all of my problems, this is by far the most debilitating. Two years ago, we went to Vanderbilt's Autonomic Dysfunction Center, and they diagnosed this with one hand tied behind their backs. I'll give you an example of how today went.
My sleeping is affected by this and affected it is. Part of the time, I go to sleep around 2:00 am and sleep for ten to twelve hours, which isn't enough. It is not possible to get enough, and actually wake up rested. Other cycles, like what I am going through now, I am up all night, and go to sleep approximately around 9:00 am and only sleep for a few hours. It is not uncommon for me to go two consecutive nights without sleeping, although my body is exhausted. My sleep disorder/neurologist told me that the way my nervous system is wired, any sleep medications bypass where they are supposed to go and are worthless.
Once I wake up, I almost always feel very sick. Extremely weak, aching muscles ~ all muscles, horrible nausea (which is caused by a POTS symptom, gastroparesis) and a total shut down of my brain. This extreme symptom attack usually lasts approximately an hour or two. At that point, I am more comfortable to get out of bed and evaluate my condition for the day. Honestly, my best days, are those where I literally stay flat on my back all day. The worst is when I do spend my day on my back, but still have heightened symptoms - to the point of being scary....they are the worst days.
My internal body temperature cannot regulate the extreme heat that emanates from my body, as well as my reaction to heat. My glasses continually fog, due to the humidity given off of my head - yuck!!! In fact, I just came back from filling my ice water glass. My body is on fire and my glasses are fogged. This is from sitting at the computer and the exertion and adrenaline involved in posting.
Hand in hand with the extreme heat issues, I have another POTS related condition, where my blood volume is very low...meaning, there is not sufficient blood traveling through my veins. Because of this I am severely dehydrated - always. My doctor told Jimmy to be sure that I ALWAYS have a big glass of very cold ice water next to me 24/7. There are times that I am hit with what seems to be like an emergency situation to get fluids in to my body. This happens several times a day. I guzzle, guzzle, guzzle. When I do this, I can actually feel it being absorbed in to the roof of my mouth. This is not the same as simply being thirsty. The low blood volume is a nightmare when it comes to having blood work done. Half an hour prior to having a needle put in my vein, I drink between 1/2 gallon and one gallon of water. This helps expand the blood volume and makes my veins accessible to the nurse. There have been times where I have been sent home because they just cannot get to the vein. Luckily, now that I know about bulking up with the water, it has been smoother sailing in that department. I have to say I am a nervous wreck. On Wednesday, I am having the Barrett's biopsy. This is done with the endoscope. This involves getting an IV to administer the sedative. UGH!! I am forbidden to drink anything for many, many hours prior to the test. I cannot imagine how they will get my skinny, threadlike veins. I just hate it when they have to route around looking, and looking, and looking.
With POTS, my blood drops from my brain, heart and lungs to my legs, after standing no longer than fifteen minutes. Soooo, when cooking dinner, I have to break very simple recipes in to several steps. I'll stand as long as I can, stop get on my back. As soon as I feel the blood has worked its way up, then, I'll tackle the next step. Usually, I try to push it and get as much done as possible each time I am standing. When I wait too long, my body basically crumbles. I begin sweating profusely, tremors, difficulty talking w/o slurring words, my heart races, breathing becomes labored, a feeling like my lower back was hit with a 2 X 4, which causes intense back pain. There is a debilitating weakness that occurs and I have to take baby steps back to my
bed, saying oh my God, oh my God, oh my God. By the time I get back to my bed, I am shaking and gasping for breath. My bp and heart rate have jumped by at least thirty points, from before I stood up. This is a daily issue, unless I stay in bed all day.
I do have to toot my own horn...today was a very productive day. By my standards, it was the best of the best. On the downside, I had to miss my precious three year old granddaughter's first dance recital.....Oh, it tore my heart out. I heard she was one of the best.. Gabby is so much fun! The recital started one hour after I finally went to sleep this morning.
I woke up around 2:30, had my usual rough first hour, then accessed my situation. I made a great dinner ~ very similar to Bonefish Grille's bang, bang shrimp. It may have taken me four or five trips back to the bedroom. Also, I washed my sheets and put them back on my bed. The best part was my shower...aaahhh. Showers are not fun and most days too difficult and too much energy involved. It always amazes me how difficult it is to wash my hair and the normal rub-a-dub. Before getting out of the shower, I have to squeegee the glass doors :(. Then comes drying off with the towel. The exertion it takes to do this, causes my POTS symptoms to kick in. For me, this takes an excessive amount of energy. I sweat like crazy while drying off! It felt so wonderful to slip..actually collapse, in to my bed with clean sheets. This was a banner day. It felt amazing to actually accomplish something - making dinner (although, it was too ambitious for my condition), washing my sheets, making the bed and taking a shower...I am all that and a bag of chips...but I really need to switch out the chips and replace them with celery sticks...like yesterday!! I get a day like this maybe once a week.
I guess my final words on POTS would be the negative impact it has on my aortic aneurysm and bad aortic valve. It is imperative that my bp is in check. With POTS, my bp jumps very high and overrides my bp medication, when I am vertical. When this happens, it is possibly accelerating the growth of the aneurysm and thickness of the aortic valve. My doctors are trying to hold off as long as possible with this surgery. With POTS, I am only to have life saving surgery, as it puts me at a high risk. MY doctors are holding off as long as they safely can. There are more complications for me regarding the surgery, but I can see this can go on forever. All this, and I am only trying to explain the impact of POTS on my life.
It seems like I never actually delve in to my specific illnesses. I have many more serious things going on, but will wait for another time.
This should give you all an idea of the impact of POTS in my life. This is really more relevant for my sick readers, but know I need to share this information.
Still on my Words With Friends frenzy. So much fun! There are times when I have as many as fifteen games going at once. Love playing...and love turning the TV off!
I know this wasn't a fun post, but I suspect many of you are wondering..."yeah, but what's wrong???" I'll gradually get in to it. If it were a matter of a single diagnosis, I would have spit that out the first blog. Believe me, I'm doing you a favor by breaking it all up!
Sorry for the blaaahg... hoping for a better post next time.
Good morning everyone and good night to me...
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