Mango, Migraines and POTS

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.

I need to see a cardiologist

Photo by Khadeeja Yasser at Unsplash

I had a doctor’s appointment today in Halifax. I had to go into the office because I needed a pap test. Since I was going into the office I had wanted to talk to him about the racing heart/high heart rate, dizziness, and all the other symptoms that I have been having since earlier this year. I was a bit concerned he might not take it seriously, but I needn’t have worried because the happened right there in the office as he was watching. I mentioned it just a few minutes before it happened and he asked what my Fitbit Versa lite said my heart rate was. It said 121, he checked with one of the finger pulse ox monitors and it said 125.

After the pap test, he handed me my bottoms and asked me to wiggle into them if I could without sitting up and left for a moment. I wiggled into them and called him back in and he then checked my Fitbit and it said 80 and his pulse ox monitor said 84. He then had me stand right up. It took about 45 seconds but I started getting dizzy. He checked again and my pulse was 125, he had me continue to stand for 5 more minutes while we discussed other symptoms and he checked again and I was 143.

He asked if this happened a lot and I said often. Basically I noticed it sometime after my car accident and it got worse about March or April until it was several times a day that it would happen. Interestingly enough it’s happened to me before. It’s been happening off and on for years and years. He said this was not normal and indicates something really is wrong. So he wants me to get blood work to see what it comes up with, in the meantime, he’s going to refer me to a cardiologist and is hoping they will set up a monitor to monitor my heart for a few days to see if they can diagnose something.

While writing this I decided to do some searches on my blog for similar symptoms and found a bunch of stuff. I actually mentioned the symptoms in a post back in February of this year, and I mentioned it as far back as this post in May 2013. I mention headaches, nausea, and dizziness or vertigo and throwing up and trips to the ER for fainting or falling.

I remember going to physio and looked it up and I ended up in physical therapy at the Atlantic Balance and Dizziness Center in 2013 for what they thought might be benign paroxysmal positional vertigo, which they could not definitively diagnose as I did not have nystagmus (repetitive, uncontrolled movements of the eye), which I mention in this post in March 2013. I am wondering now if what I was experiencing back then is the same thing as now.

I don’t remember what tests they did at the time. I have been trying to figure it out by going back through my posts from early 2013 but I can’t find any specifics, I am sure they did some though. I do talk about “brain fog” or concentration issues/confusion. I also talk about poor sleep or insomnia, fatigue, constant pain, and even chest pain. I would not have had any sort of Fitbit or anything at the time though so my heart rate would have gone unnoticed if it was elevated at any point (ie sitting, standing, etc.) and if they didn’t specifically check it then it would have gone unnoticed as well. I can’t honestly remember if they would have or not.

Either way, I think that I am getting somewhere with this finally. Considering it’s been at least 7 years according to those posts. I didn’t look much at the years in between but I know that I have been experiencing a lot of these symptoms throughout at one time or another, and sometimes they would be worse than others. It’s got me a bit intrigued and I am hoping that COVID won’t get in the way of a diagnosis, but I am scared it might.

Pain, Fatigue & Kittens!

Photo by little plant on Unsplash

It’s a cute kitten kind of a day! Why? Because I just need to look at their sweet faces. Actually, we are getting a kitten in about 5-6 weeks. Two little orange ones we are naming Mango and Marmalade! These are not them by the way. Just two cuties I found on Unsplash. I don’t have any pictures of the ones we are getting yet. We are taking Marmalade and Mom and Dad are taking Mango, as long as Max does alright with Marmalade, if not Mom and Dad are taking both but one is still ours.

I guess it doesn’t really matter in the long run because we are actually moving sometime within the next couple of months into the house they are in sort of with them. I say sort of because they have a trailer behind the house that they want to stay in, it has heat, a/c, a full washroom, kitchenette, etc. It’s a camper trailer, not a mobile home, but the plan is for them to eventually start travelling Canada and the US with it and only being here a couple of months in the summer and staying on the property with it down by the pool where it is now.

It may be a year or more before we get there though, one because of COVID-19 and two because they both need surgery. Which is why we are moving there. Dad needs surgery on his back, he has a few problems including a couple of herniated disks. Denton will be moving into the cottage on his own (fingers crossed) and we will be moving into the old house, the “haunted” one, which should be interesting. We are moving into the master bedroom, there will be a spare room which we hope will be used soon enough for a foster child, which we will start the process for once we are moved in and things are settled down a bit and then the 3rd bedroom will be a spare for Mom and Dad or Denton in case they need to sleep in the house.

Dad can’t use the upstairs at all so they have not been sleeping up there, which is why they were initially out in the camper, they love it though so they want to stay there even over the winter. We will just have to see how it goes. I am both excited and somewhat scared it won’t work out well. It’s important though to try and get my brother out of there and into his own place because they can’t handle him anymore, but I am not going to get into that at the moment, maybe later.

In other news, I have been experiencing some major fatigue, like completely debilitating fatigue. I am having the hardest time sometimes just sitting up on the couch. I’ve had issues with fatigue before, but nothing like this. I am struggling with everything at the moment. Mentally wise, not so much. I am actually okay. Maybe a bit stressed and slightly anxious but, no depression. I am not sure if the fatigue is from being in the pool so much. I am in there a few hours every other day. This started before the pool was up though and I have just been fighting it for a long time as it gets worse.

I start school at the beginning of September again so this should be interesting considering I will need to be in Halifax (a 2 1/2 hour drive) for 2 days a week. I am just going to have to power through. I am absolutely determined to make this work despite all the setbacks. I have been doing my best to just keep occupied and deal with the pain, fatigue, headaches, dizziness and nausea(and more) that has been going on forever and has just gotten worse since COVID-19 started (of course when I can not get in to physically see a doctor). At least now I can get in for certain things if needed, so I am going to try and get in and see him as soon as I can.

In the meantime, I am just puttering around waiting for things to happen. There was no point getting a job for a month as I won’t be able to continue it if I am in Halifax two days a week (weekdays at that) and home the rest of the time. I still have a bit left over from my last student loan so I am just making it last as long as I can while I wait for the next (new?) loan on September 5th. Oh, and I have been designing some stickers for my Redbubble store.

I’ve always liked to draw and doodle so I am teaching myself how to doodle digitally on my tablet. The designs are also available on a lot of other merchandise as well. So if you’d like to support me and help me keep Life With Kadie (and this blog) going this is a great way to do it. Right now I just have the four doodles but I plan to make a few more today. Hopefully, I will improve some as I go. Pen control on the tablet I have seems so different from pen on paper, at least to me it does, am I the only one that thinks this? I am completely new to drawing digitally and don’t have the best equipment but wanted to try with what I have before I commit to anything more expensive.