Sometimes all it takes is a day to clear out your mind a little bit. Everything has been eating at me lately. My treatment with little to no progress, dealing with some moronic doctors, trying to get ahold of a medication that is very difficult at the moment, money, relationships, life. When you don’t have a whole lot going on, things will eat at you like no tomorrow.
I was more than excited that Dave and I got to go on an overnight to the ocean. It was just what I needed. The smell of the ocean air, the sand between my toes. A really yummy seafood restaurant. I didn’t have to think about all of these things, I hit the “freeze” button and forgot about everything for even just one day.
The few days before I left weren’t pleasant. I wasn’t doing very well at all. My ACA has been bothering my feet (the salt water seemed to help wonders) , and my vitiligo has been more visible on my shoulders and legs. It really hadn’t been so bad in awhile, so there must be something in my immune system that isn’t doing too hot, as it is an autoimmune condition.
As you read before, I had an umm… little “accident”, and the same happened the following day. I really have no idea what has been going on. At least it has been a few days that I can report that I am fully potty trained. Oy. Talk about insult to injury.
We got up early, and walked along the beach. Although I didn’t get to walk the entire beach as I was able to last year, I made it halfway. It was more than I thought I could do, so I was more than happy. I wanted to give up during our walk, as my legs and hips were in a tremendous amount of pain, but I forced myself to keep going. Here I am, all happy I made it!
It was kind of a bummer to get a reality check that I am obviously not recovered from my downfall, as I could physically do more one year ago. I remember though, that there have been a few partial days of blue skies. Partial days that have been better than a very long time. I haven’t had any whole days yet. Maybe this new protocol that will be coming next time around will get me going in a better direction.
Dave and I had our usual competition as to who could find the best shells and sand dollars, and for once, I won, finding a whole sand dollar. 🙂 Yay!
The water was absolutely freezing, but I managed to do a quick jump in. We laid in the sun for awhile, and headed out before the beach got absolutely packed, and the tide was slowly beginning to come in.
That was all I needed for one day. I have felt like I am beginning to lose my mind, have been extremely frustrated, discouraged, and just plain angry. Angry at everything. This brought up my spirits a bit.
Of course, there is that price to pay for having a moment of enjoyment. We got home pretty early for a getaway, and Dave wanted to go to Lowe’s to pick up some roofing material since our shed is falling apart. Every year he patches something up to try to keep it afloat. One day I am sure I will come home and that thing will be a bunch of rubble on the ground. A good strong gust of wind, a big snowstorm.
Anyways… I knew Dave didn’t want to go by himself so I figured I would join him. I was still feeling like I had a spoon or two left of energy, so away we went. I knew the lighting isn’t too bad at Lowe’s like it is at Walmart or a Rite Aid, and he had an exact mission so there wouldn’t be a bunch of trying to wander around and walking.
We had to have been there for about 10 minutes, and I leaned against the wall while Dave was measuring out the supplies he needed and I began to feel off. Very off. I grabbed my blood pressure cuff and did a reading. 80/50. Uh oh. My heart rate was 80, so that was within the normal limits at least. Within a few seconds, I was passed out cold on the floor.
I don’t really remember anything, but I guess I couldn’t get up, and Dave put me on one of those pallet thingys (I don’t know what it is called) with wheels, and wheeled me out to his truck. He said I was sweating like crazy and was really clammy. About an hour later, Dave woke me up when we were back home again. At least this wasn’t in a very busy section of the store, as I am sure it was a sight to see. Kimmiecakes getting wheeled away passed the heck out.
I have a few bruises on my arm from the fall. At least I didn’t hurt my entire side and pulled all my muscles like my last fall, although that was a drop seizure and not collapsing due to blood pressure. Friday is my electrophysiologist appointment though! We will see what he has to say. Let’s hope it isn’t a complete waste of time.
Now, question for you, readers. If you KNOW what is going on with you, what should you say to your doctor to get them to listen? Any suggestions? As many of you know, doctors egos can get in the way. I just want a push into the right direction and have continued treatment here in New Hampshire. Dr J is wonderful, and got the ball rolling on this all, but he is an LLMD. Not a cardiologist. I need someone on my team here.
This doctor is the same I believe I met when I had my linq monitor put in, and he sounded like he thought dysautonomia was a very good possibility. He was the one who told me that he does not do a tilt table test, as he believes that many POTS patients come out with a negative result even though they definitely have POTS, so a clinical diagnosis should be made. It is a little promising he knew about the condition, however, I am not going to give my hopes up.
I am on day two of my final bit of treatment, Coartem. I have seen a lot of improvement with my reactivity to this Babesia treatment. Fluish, achy, unmotivated, exhaustion. I can begin to feel the usual emotions coming back, but I am trying my darndest to put them on the back burner. Sometimes Coartem can turn into a three day cry fest. Knock on wood it hasn’t happened yet.
After my round is finished and I do a happy victory dance, I will be doing two days of green juicing. I know I will be hungry, with all sorts of foods popping into my head (for some reason it always reverts to Chinese buffets and bologna sandwiches at some point), to try to detox as much as possible.
I am not sure how long I will be on a break, it really depends on when I get my new medication, but I am allowed to take a three week break if I wish to do so. That is a bit scary, but I wouldn’t mind trying it… just to see how I do.
Hope you all have a wonderful week!