A LOT of jumbled thoughts just warning but if you actually care about my life here you go

I have so much going through my head so this will probably be a spewing...excellent word. pardon my other half word you find in here too. I had to do it.

For starters, I hate Mondays (I am aware today is not a Monday but I didn't feel like dealing with people on Monday). I know NOBODY likes them and I am sure you are thinking pshhhh girl please you trippin you don't even have to work can veg all day. smh. I know that exact phrase went right through your mind. Admit it. Here is the thing with Monday's: They are a semi-sudden bit** slap to the face, a reminder of another week of what feels like (to me) no progress. Stagnant. I don't feel like I am going in any direction. My heart meds have helped to an extent. My pulse is between 85-98 while laying down and then it goes crazy again when I stand but I also have a BP pill and I haven't passed out completely in a little while. Thank you God. Close calls but those are more tolerable.

My lack of progress and well more so my lack of access to the correct resources to achieve progress. Here is the deal: my electrophysiologist hasn't really sent anyone to physical therapy for this because they train themselves at home using this booklet thing she gave me. I have no clue what those people did because I am in phase one: the lying down phase and all this booklet really says is "5 minute warmup" 10 minute exercise" "5 minute cool down" uhhhhh what does a warm up look like when you are lying down?  what does a 10 minute exercise look like when you are laying down? (planking? lol) same goes to cool down. I am beyond confused and besides that I am one of those people that need specific direction and guidance in most things and this is no different. She is in full agreement on PT but I can't find someone to take my case. Postural orthostatic tachycardia syndrome and autonomic dysfunction apparently aren't studied by physical therapists and I don't expect experts but they could read up on it and use there knowledge combined with research to come up with something you would think. grrrrrrrr. STAGNANT!

Also, my complete or nearly complete loss of independence is making me go postal. You don't realize how important it is to be an adult and to be able to drive until it is taken from you. I can't go pick up my own prescriptions, deposit checks, get groceries, get essential items such as shampoo from Walgreens and I hate it. There is a stir crazy factor in there too which one would think would be off the charts but when you feel like crap most of the time it isn't so bad. Having said that stir crazy and bored and lonely are two different things. Most of the time I don't feel up to going places but I long for human interaction sometimes just to make the time go faster and I like people. Most people. The not driving thing though is tough.    

I had 3 more meds added to my mound today due to these migraines I have been getting since the seizure. The verdict is up in the air if they are caused by said seizure or triggered when my heart rate goes high or maybe a little of both but regardless I now take more meds than a lot of old people. So that happens and I have two symptoms that are the most prominent and crazy annoying going on right now that I could use prayer for because they are wearing me out. The worst is this shortness of breath, the cause isn't exactly known but it's cardiac or nervous system related. I have some days where I can do dishes, fold laundry, and clean the litter box without feeling like I literally can't believe until the end of said duties then there are days where I have to mentally prepare myself for the journey ahead of me to walk into the kitchen to get ice for my cup. As soon as I stand up and begin hobbling and wanting a walker and an oxygen tank to get me to the freezer so I don't die. Not going to happen I know but it sure feels like it. Those days are absolutely the hardest. laying there with a constant awareness of your breathing is a form of torture.

The other issue is just weird. Every night when I try to go to sleep my body is cold but my face feels on fire it is red and so hot that ice packs and cold rags must be applied and sometimes re-applied in the night just to sleep. Weird but annoying. So yeah that's my jumbled thoughts that aren't exactly happy and I won't apologize for it because life isn't all roses.

I do want to include the following message: I have some really special people in my life that deserve recognition for fighting this with me. My roommate gets the most because she is not only my roomie but my best friend and I know it is hard for her to only be a friend in this. All I want from her is a friend not a home care nurse and 24/7 worrier lol Also, my parents are great too. My mom drives me to all of my doc appointments regardless of how bad she feels and my dad is well just my daddy, my guide towards God, my personal drug dealer prescription picker upper no matter how far out of his way it is. Lastly, My dear Terri, who provides me with wisdom that can only come from God or someone who has been through similar situations and is the best listening ear with the most compassionate, selfless and loving heart I have ever encountered.