Well, Its been way too long since I've updated, and I feel badly about that! I know I have readers, but I'm not giving them anything to read! Or anything to update on, or pray about.
Thinking of prayer requests, will you all please pray that we receive/can raise the funds for treatment after surgery?! Dr. Jemsek has a pretty serious treatment plan and we Seriously need help! Please pray with us!!
This year started out with a Bang! My mom and Grandpa were in the hospital at the same time, having heart caths on the same day. Previously Mom was supposed to take me to my appointment in D.C. on January 3, but suddenly plans changed and William went, thankfully he was still on winter break from school!
Thank you William for going with!
While we were at it, we decided to go see Grandpa as he wasn't doing well. Its only 2 hours down from D.C. area, so we couldn't get much closer if we tried!
I might also note that we were able to visit my Aunt Linda Hoover and her husband Derrek, whom are living in D.C. It was lovely seeing them and having dinner there....I guess, I was quite out of it! During dinner William kept hitting my leg, because I was falling over, as if I was asleep. I don't know where I was, sorry Aunt Linda and Derrek! :-/
At my appointment, we decided to only do half a cycle of meds, and after the round, I would have a phone consult with Dr. Jemsek to see if the added Xylitol and Lactoferrin made any headway with the bio-film. I did the 2 weeks of IV treatments and unfortunately the added film busters did nothing.
However, the Friday before I had my phone appointment with Dr. J, I had fallen and hit my head. I always have a headache. Always. But this just made it worse. But it made it worse and worse every day. By Monday I couldn't handle it and since I AM on Coumadin (blood thinner), we decided to go to ER just to make sure I didn't have a bleed!
We've had more experience with brain bleeds and close calls than we want!!
I was fine, no bleed, so they gave me a shot, which didn't help incidentally, and sent me home.
Since I had hit my head and had stirred up all my symptoms, particularly neuro, he didn't want me on anti-biotics the next week, so instead I did a week of Diflucan. And boy is that drug evil!! I got so sick. I was out of my pitiful mind.
We decided to do a detox bath...all fine, except that I was SO dizzy, double-blurry vision, and absolutely no co-ordination. When I was sitting on my bedroom floor I just fell over...ended up knocking my big space heater over. Haha!
We will just say that the detox bath thing was an experience I don't wish to ever repeat. Minnie had to help me in, help me on the shower chair later and stabilize myself, dry off, dress, and pull me to bed. All the while my world is reeling. I can't focus or see. It was awful!
I got back into bed and curled up was out....checked out, or out of my head, or asleep....I don't know. I thought I was awake, but Minnie took pictures of the puppy coming and curling up with me and sleeping....so sweet!!
OH! I forgot to mention, the first week in January, we started puppy sitting an adorable but nixy yorkie/maltese mix, and we will have her for 4 months total! This as provided plenty of challenges, yet, we have discovered just this last week how attached we are already, in 7 weeks! Oh my. Good byes will be hard, I'm sure.
Ok, so I did the week of Diflucan, found out how evil the drug can be, and incidentally I was herxing, it wasn't an allergic reaction, in case you are freaking out or something.
Randomly on Sunday night, I started having this awful chest pain that I get sometimes. It starts with banding, then shoots pain up my chest, esophagus throat, into my jaw and sort of settles into the roof of my mouth. I don't get this often, but I had mentioned it to my Cardiologist and he said that the next time it happens I had to go to ER. I was just sitting there, waiting for it to go away, so I wouldn't have to go in (haha) but it just kept coming in waves....awful pain. So when I said I wasn't ok, we headed in. To the ER. Again.
Last Monday, when they stuck us WAY back in a deserted land of a room, they told us to come back after Wednesday and the second half of the ER would be finished and they would have over 40 beds then. Well, we were back Sunday. And I got a full tour of the whole new part, all from my hospital bed. Not really a funny joke, but you have to make the best of it all! It turned out that it wasn't any cardiac event, and upon hearing of it and my "gallbladder attacks", Dr. J said that my vagus nerve was involved.
Then on to this last week, starting low dose, oral anti-biotics. Just for last week and this week until I leave next week for Atlanta.
Atlanta you say? Yes, I am going to Atlanta, Georgia to have CCSVI surgery done. It is to unclog my jugulars, in order for blood/treatment/anti-biotics to flow through more freely, and to be more effective. My ultrasounds showed severe blockage and I could really use more oxygen in my brain....I've sure been having POTSy attacks a lot lately! (This is not the cause of POTS....POTS is when your heart can't properly get the blood to flow back up to your heart and lungs and brain....but it does result in a lack of oxygen to the brain....and lightheadedness, dizziness, syncope, presyncope, etc) Hopefully the surgery will have some sort of a more immediate effect, but we will see when we get there and it is over. :)
Last week, the weekend in particular, and so far this week have been wracked with pain. Honestly, I think it is pure will power and the promise that I could and just WOULD update you all tonight. But I think that is the only reason that my hands are lasting this long. BUT, just in time, I must go. for it is far too late.
Pain is a mean thing. It knows no time. I hope to update you all on the CCSVI surgery, but I put no promise on the time! ;)
Be well my dear friends!!
