Sorry, this blog post is going to be kind of all over the place so much has happened in the last month! Also sorry for no updates but I have been having a rough month healthwise and have not had much energy at all. Anyway, the above picture is one of the most recent I have of Mango. He is doing so well! He’s growing really big though he is still a lot smaller then most kittens his age would be. He is now eating dry kitten food (Hill’s® Science Diet for Kittens) and has been for a while. He’s such a feisty happy little guy and we are so lucky he survived. Marmalade is buried with another pet cat we lost (well, mom and dad did) back in June, Pumpkin in my parent’s backyard and mom made a beautiful memorial to them. Overall it’s been rough but I take comfort in knowing that he is there with Pumpkin and that he was with me for his last hours and I am doing really well mentally with it.
Physically I am not doing so hot. I have been having symptoms for a while which I thought might be some sort of dysautonomia and it turns out I was right. My family doctor is pretty sure I have POTS (postural orthostatic tachycardia syndrome) which we are now looking further into. I have not been clinically diagnosed by a Cardiologist as I am still waiting to see one but I have been diagnosed with the “poor man’s tilt table test” in both his office and in two different ER’s on 3 different days all of which led them to say it seems to be POTS.
This has led us to talk about a lot of things, including mobility aids such as a wheelchair and other things. I’ve also been diagnosed with severe migraines as well. I have been having issues for a long time with vertigo upon standing or even sitting up (I have years and years worth of posts about it here), issues with my digestive system including an IBS diagnosis (in my 20s). I have been diagnosed with both chronic idiopathic urticaria and dermatographia. I don’t know exactly when but it was since Eddie and I have been married. Now we are thinking that it might be more along the lines of POTS and Mast Cell Activation Syndrome which makes sense.
Everything seems to be making more sense lately when it comes to my health. Things are starting to fall into place, unfortunately as my health seems to decline a bit. I am now not able to walk very far. I can not walk around a store (sometimes I can get away with it if it’s quick and I use a shopping cart to keep me upright) or go for walks or hikes. Not because my legs don’t work. They work fine. I just get so dizzy and blackout or almost blackout. I have not fallen in a while but only because I know not to put myself into that position, which means doing nothing and going nowhere.
I am back in school and doing well with it and only going up to the city once a week (sometimes twice) but we have been trying to get it to be on days Eddie is off so I have company. Right now the biggest struggle is walking through the campus to class. I haven’t seen my doctor in person in a while because of covid but I might ask about a handicap permit. I am seriously considering what to do because I am missing getting outside. Over the summer we mostly drove the car right down the path to the camp so I wouldn’t have to walk and I crawled up the steps to the pool and got in, once in I was okay. For winter though I am seriously concerned about falls.
I have been put on a medication called propranolol which should help with the POTS symptoms. It’s brought my heart rate down from being about 100 when resting to about 65 and it’s helped steady my blood pressure. I was warned it could make it go too low though so I have been keeping an eye on that. We bought a shower chair because the heat in the shower was making me blackout. By blacking out I mean basically my vision going completely black. I can still hear (though sometimes it seems muffled) and I don’t always actually fall. I try and grab onto something till I feel better and that works around home as my house is not that big and I always have something to grab onto but it’s made outside activities such as walking, hiking, camping, etc impossible to do.
It’s also left me sleeping all night and most of the day. I am getting upwards of 18 hours asleep and it still does not seem to be enough. I fall asleep anytime I sit down and lay even the slightest back. I went from never sleeping during the day to have to take 2 naps a day. I always feel like I have no energy and every single thing I do seems to take double and triple what it should out of me. I still feel like I am getting somewhere though as this time the doctors are actually seeing it. They are witnessing me falling asleep while talking to them, fainting when I stand, etc and now they are taking it seriously. I just hope that covid doesn’t mess with a clinical diagnosis too much.
Not that it matters much, one of the main treatments of POTS is the medication I am already on and also using a wheelchair which I have no insurance for so if I get one it will be out of pocket anyways and will not require a clinical diagnosis or prescription. My doctor suggested a custom one so that I am not doing any more damage to myself and I will also be able to just keep it with me and walk when I can since I should still walk as much as possible. So I guess we will see. I’m not convinced yet.