Wednesday, April 23, 2014

My POTS is like a diamond ~ Forever

I had a follow-up appointment with my electrophysiologist (cardiologist) today to see how my medication adjustment was going and to get my lab results. At my last visit he wanted to check my urine for elevated catecholamines to make sure that I did not have pheochromocytoma or some other carcinoid tumor causing my POTS.

Since my visit with him last month he had received the visit notes from the geneticist which diagnosed my Ehlers Danlos Syndrome. Prior to this I was only diagnosed with joint hypermobility syndrome so I think he was still assuming that my POTS had an unknown cause and wanted to do some further testing.

He walks into the room today and says, "Ehlers Danlos huh." His voice and body language spoke defeat. Not his own, that he couldn't use me as some mystery case lab rat, but rather mine. He had such empathy in his voice as he spoke about how young I am and that there is really nothing more that we can do other than what we are already doing. Unfortunately what we are doing is not really helping much.

The young part is relative. At 41 I am not young per say, but in the grand scheme of life I could have a really long time left to live with this. I try to think of everyday as a new beginning and hope for the best in each one. But, that is a whole lot of possible bedtimes hoping that tomorrow will be a better day and that I can muddle through. A daily dig for the diamond in the rough.

He had doubled my beta blocker last month and that was NOT working out at all. The side effects were more than I was able to deal with. I felt like I had zero blood making it beyond my knees and that is not good if you want your brain to have even a random firing, not to mention the endless chest pain. I did learn during that time that I am better off if I take my dose at night instead of in the mornings. It helps knock a bit of the top off of the early morning symptoms when I am usually having my highest heart rate issues. Small progress is still progress. Any little bit helps.

Since my DNA is not going to be recoded anytime soon and I will continue to produce crappy collagen, I might as well just get use to this craptastic syndrome infested body of mine. I suppose I had better just pull up my big girl "compression stockings" and get on with it.

It is never a real joyful hope-filled experience to have it reconfirmed by yet another specialist that this is ~ Forever. However it is helpful in making me realize that I need accept my limitations and tackle them head on. Okay, tackle might be a little overambitious. See what I mean, limitations are so hard for me. How about slingshot rocks from the couch.

photo via Pinterest
See, all of the crushing pressure (stress) and extreme temperature changes (thermodysregulation) can create beauty after all. I just have to dig deep down to find it.

Diamonds are Forever!

Monday, April 21, 2014

Am I really Chronically Ill?

These two words are really hard for me to comprehend ~ Chronically Ill. I can do the ill part. Get some rest, suck it up for a few days and get on with life. After more than a year of day-in and day-out funk, I am having to come to terms with the fact that this is how life is. Chronic. Chronically messed up. Sounds better than chronically ill.

My stubbornness is a blessing and a curse. What good is it doing me to not give in and just do the best I can when I can. My warped thinking is that no matter what I do, I am going to feel "messed up" anyway. Might as well just pay for it later and get through now. Is this a good idea? Absolutely not and well maybe.

I think the key is finding balance. On one side ~ Letting go of enough stubborn to come to terms with the fact that I am not in control of how my body operates day to day and getting it through my thick skull that I am not going to miraculously wake up cured tomorrow. The other ~ Keeping enough stubborn to make it through each day without letting illness control my emotions.

I am not the curl up in bed and let the world go by kind of person. Before the onslaught of neurological issues set in, I was never idle. I was Full On Go even in spite of my pain. Pain is something I have become so used to after all of these years that I suck it up and push through it. Not real smart, I know, but it works. I deal better with the pain than the side effects of pain meds so it has always been ibuprofen or nothing for me.

I remind myself of the elderly people I use to care for in my nursing days. Ask them if they have pain and almost always the answer was no. I would then probe about their arthritis or any other chronic pain source and they would say oh yeah that hurts but that always does so that doesn't count. If it was not a new acute pain it had become normal and therefore did not count. Wrong! I wish I could take the advice I have given to an endless number of patients in my day. They say nurses make awful patients and I have to agree.

So even after all of these years, I have never allowed myself to take on the label of chronic pain sufferer. I am going to be honest here and say that it feels like I am a weak sissy girl if I were to wear that label. I would never ever think of others that same way, but for me personally I feel like I have some super hero image to live up to (only to myself of course). Trust me, I am no super anything and have never been. It is just some ridiculous sense of failure to my type A personality. It is even more ridiculous that it is part of my defunct collagen producing DNA and absolutely nothing I have control over. Nope I don't have control issues. (insert mega sarcasm)

Pain aside, I am a sweepstakes winner of the daily thrashings of dysautonomia. This is one tough hombre. It is a beating and kicking you while you are down, licking your wounds for a lifetime kind of illness. I wish I would have never met the likes of it. It is so busy kicking my butt in about 65 different ways at one time, I can't even keep track of everything that is happening at one time.

This is the one that is wearing me down. I am not winning this fight- At All! Oh, I may have moments and I mean moments, not hours or days, that I think I may have this thing slightly figured out and then WHAM!  Left hook out of nowhere. It is unrelenting and seemingly has no boundary it won't cross. Chronic!

There are many possible reasons to develop dysautonomia (the POTS variety for me) and many of the cases will resolve on their own after time. I am not one of those cases unfortunately. With my hyper POTS being caused presumably by my EDS it may only get worse. If only I didn't have a double dose of sorry we don't have a cure, but we can maybe kinda somewhat manage your symptoms as they progress. But I do.

So am I really chronically ill? Yep, I finally think so. Why does that seem like the hardest of all of my pills to swallow?

Monday, April 7, 2014

New Addition to the Family

After many years of the kids wanting a puppy to call their own, it has come to be. Luke has crazy allergies and it has been a struggle for him to even be around the guinea pig "Cuggles" for for more than a few minutes without sneezing away.

Every once in a great while I find myself looking in the online classifieds at the puppies for sale. Well on Friday I found what I thought to be the one that Luke might be able to tolerate being around. Everything I read said that they were as hypoallergenic as any dog can be, not to mention wonderful family pets. Double Score!!

He is a Cavachon, which is a mix of a King Charles Cavalier and a Bichon Frise. I had never heard of this breed mix, but evidently they are all the rave in the designer dog world. I am so not designer anything! I am all about what is best for my family though. If you decide to look up cavachons you will find that they can be out of this world expensive. Like anywhere from $800-2500. Hahahahaha! I do not have that kind of money to spend on a pet. We only spent a small fraction of that.

There was no picture of the little fella and he was a couple of hours away. I am not sure what even made me pursue the ad other that a little nudging from above. I had many reservations about it, but I just felt that he was suppose to be with us. He was an older pup (5 months), had no potty training and was far away. Well I told the breeder (and I use that term loosely) I would take him sight unseen if he would meet me half way. He agreed and the rest is history.

This little guy is either going to cure me or kill me. I think it may be the latter of the two. He is so insanely cute and lovable though, it is worth it. Luke has been with him all weekend and he has not bothered his allergies one bit. Not one sneeze (caused by him). Hip Hip Hooray!

"Willy" is exactly what we were waiting for and he has taken to us as if we were meant to be his.

I hope we have many many years of love ahead of us!

Thursday, March 13, 2014

Banning the prefix Dys-

The predictability of routine. The certainty of control. The tidiness of outcomes. Ahhh, my comfort zone. Anything that starts with the pesky little letters "dys" does not fit my criteria of acceptable.

dys- = bad, difficult, disordered, abnormal, painful

See what I mean. It is just no good. Especially when it is referring to our bodily functions.

Back in my nursing days my biggest pet peeve was wishy washy doctors. I was okay with the nice ones and the rude ones, as long as they were consistent. Those Dr. Jeckel and Mr. Hyde ones killed me.  I pretty much feel that way about life in general. I like consistency.

It is incredibly difficult, bordering on impossible, to explain to people how dysautonomia affects me. Especially if it starts with, "I have POTS." The strange look and reply of "You have WHAT?" is sure to follow. I have this funny association in my head between the POTS and the piles. Both are a pain in the a**. One figuratively and one literally. (more of a family joke)

I think I should just start telling people to put dys (or one of it's meanings) in front of everything our bodies do and that pretty much covers Dysautonomia.

bad dizziness
difficult breathing
disordered thought process
abnormal -well everything
painful digestion

Yep! It works! The list could go on and on forever. Just try it. Pick anything.

I suppose the medical professionals have to have some Greek to throw around so that they can speak in code, as if no one should know what they are talking about.

dyspepsia- painful, difficult, or abnormal digestion
dyspnea- difficulty breathing
dysrhythmia- abnormal heart rhythm

Better yet, I will make a million copies of this to hand out like business cards. Covered! (kind of)

The biggest problem for me is the unpredictability of it all. Not that I want to have nausea all of the time, but it would be nice if there was some sort of pattern to it other than something in the universe is not aligned properly. I am cool with feeling dizzy when standing, but the random feeling that my chair has fallen out from under me while sitting is not cool.

The positive side of random = spontaneity, which I otherwise have none of in my life. I suppose if I look hard enough or babble on long enough, I can find some good in all of "dys".

Wednesday, March 12, 2014

Shortness of Breath ~ Dysautonomia

I am rather tired of this S.O.B. interrupting my life. I am referring to the shortness of breath, but the pun was totally intended. Enough already I say!

It never fails that my body decides to go wonky on Thursday, which happens to be the day my PCP is out of the office. Then Friday rolls around and I feel a bit better so I suck it up and reassure myself this will go away soon. You know how things can change minute to minute with these defunct nervous systems. Then I usually put it off and the weekend comes and I am either miserable waiting for the office to open on Monday or I am beyond whatever was initially ailing me and on to something completely different by then. You all know what I am talking about here, right?

Well this time I was not feeling better, but actually worse on Friday. I bit the bullet and called to see the doctor. It took me until after lunch to decide to call, but I was really not feeling like this was letting up. I know that I looked like the classic anxiety patient and I even told my doctor just that. When you come in looking shaky, short of breath, high heart rate and B/P and a mouth so lacking spit that you have to take a sip of water every couple sentences just to peel you tongue off of the roof of your mouth to speak, that is screaming anxiety. As a former nurse I totally realize that. As a person with a messed up autonomic nervous system (POTS) it means something totally different. I am not in a dark alley with a masked gunman, so can you stop this unnecessary adrenaline already. Enough is enough.

He reassures me that he knows that this is not just anxiety and that I am indeed sick and that we need to find some answers. What is causing this dysautonomia? We talked about some of the other things going on: lymph nodes, chest pains and the spinal cord issue. He then asks me if I have heard of sarcoidosis. Hmmm! (Not sure where this will end up.)

I left his office just as messed up as when I came. I huffed and puffed my way through a chest X-ray and lab tests and was sent on my way. He said they would call with the results on Monday. Well it is now Tuesday evening and I still have not heard anything. That must mean that everything came back normal or things are so bad that he is afraid to call me. Okay, that was not near as funny as intended.

It is a good thing that by Friday night I was feeling better. It felt like a switch was turned off and my body just slowed down like it was suppose to. No longer was my heart rate over 100 at rest and the other symptoms let up to my normal level of messed up. Whew ~ that was a long couple of days. I have learned to deal with feeling like dog doo when I am standing, but don't mess with my sitting also. Laying down 24/7 is not on my to-do list. That may sound like I think I am totally in control and I've got this. Not! I am completely humbled in knowing that I am so not in control and that Jesus is. I may fuss and not always like what is happening with my body, but I am so thankful and joyful for everything I do have in my life. Another thing that I am sure of is that Jesus has a sense of humor, just look at me! Humor is great medicine and I intend on using it to keep things real. Humor and sarcasm are close kin, right?

I don't get freaked out anymore about the dizziness, nausea, shakiness, weakness, pain, impending doom fatigue and all of the other junk I deal with, but I do not want to have to get used to being short of breath on any regular basis. It really stinks.

Hopefully I will get my results soon. Not that I expect any answers at this point. Actually it feels that I may never get any. I know that answers do not mean I will get better, but it may stop the doctors from poking ad prodding at me. Keepin' Hope Alive!

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