Becia

It was def a challenge, and I am completely feeling it today something fierce. I'm also positively terrified. I nearly passed out getting off the stage from doing the songs (I was sitting on my drumming stool), the youth minister and my friend Stan grabbed me and helped me off, and after finishing the sermon, I knew I couldn't move. The world was spinning, and I literally was on autopilot. And today, the level of Potsie-ness... I don't see how I'm gonna do this trip to the neuro today. This is literally a "stay in bed, ask for juice, don't move" day. I'm really hoping I can work out a system for this. I'm giving it a few weeks, but if my health deteriorates because I can't seem to recover from things, I will start training my sister to fill in (she's not as fluent as I am, she can hold a conversation, but as for proper interpreting, she's not sure of herself). And like I said, this gentleman was super nice yesterday, knew I didn't feel good,but was grateful I was able to do what I did. I do know one thing I need to do: cut my nails. I thought I was gonna start bleeding how many times I signed believe, and stabbed myself in the head with them, lol.

Today, I did something I never thought I would be doing again, at least to this degree. I'm fluent in asl, and when I first started going to my church, I interpreted the sermon for a friend down home that couldn't go to church anymore while she had no interpreter. I'm far from good, but I've studied the language for 17 years, and just love how it's been good for me. I signed the songs because people used to love seeing that version of what they sang, but after my friend managed to find a deaf church, I stopped interpreting, and allowed myself to enjoy playing drums again. Since my diagnosis, I've had lots of problems with having my hands above my head causing symptoms, which signing made very hard for me to handle these, so I had effectively stopped signing large amounts of time, maybe just the quick sentence here and there if I was having trouble communicating, or just random sentence. This morning, the pastor kneeled down to me and asked how I felt. I responded I was exhausted and sick, but here. He asked if I felt well enough to do some signing, we had a visitor that may require some of my signing, but only if I felt up to it. He knew I was ill, and if I couldn't, he would respect that too. After a brief conversation, I interpreted the entire service, from songs, to prayer, to sermon and offering. I am so drained, but it was such a challenge to me of can I do this. Some of the girls I taught a couple years ago also sat with him and watched, learning what they could as we went through everything. I was rough rough rough, but it made it worthwhile to this gentleman to enjoy, and I was so happy I could help him. In fact, he's coming back with the other 9 members of his family that are hearing impaired, visitng us again, and has said if I am not able to sign, that's fine too, they can follow the power points, just knowing someone is there that can understand them made it worthwhile to attend this service. I told the pastor that after arranging to try and do this for him, I need to be on the payroll, lol. I am so ill from this exertion, but after he left, I sat back and smiled. It was really nice to celebrate using my language again. It's a good exhaustion. Just had to share.

Because we're "special" (my doctors words, not mine.) My questions have always been "Okay, this is what I have, what can we do to treat it?" Its hard to believe in all the years that we've had this diagnosis in place, there isn't more being done for it. And I'm not talking research needing to be done, I'm talking just basic treatments even... why are so many doctors blind to this? I know we all have met our fair share of doctors going "what is that?" and even the "that doesn't exist," or "thats just another term for lazy" (Ive heard the last one, and I wanted to punch a wall after I did).

My username is Beciairene.

Lol. Yes! I had forgotten that scene!

Probably still working back room of Walmart, busting freight and counting inventory. I worked for what some think of as a bad employer, but I loved my job. I had a blast every day. Drumming a lot more, and singing a lot more. I'm trying to get back to some of this, but it's very hard on me. And lastly, bike racing. I road raced a long time ago, and was getting back into it when we discovered the cause of my irregular heartbeat. I tried doing some light riding before I was wheelchair bound, but yeah, it's not happening at least not any time soon. If we were gonna go outrageous, I would say skydiving, zip lining, and hiking through some of this gorgeous countryside I live in. I don't really do wild things, but those have always been desires to try. I'm gonna miss going on the roller coasters this summer when I go to the amusement parks with the youth group (I try to help chaperone, I'm more of a check in person now) I like to think that now that I have POTS, while my life has drastically changed, it's opened up a few doors. I always wanted to go back to school for something, and doing medical transcription courses at home has been perfect for me. I do them when I feel well, and when I don't, I'm good. I'm currently caught up for a few weeks, so while I'm sick with bronchitis, I can relax.

I have about three bags of chamomile tea left, hoping to pick more up tomorrow. I can't seem to catch a break, but at least after the liters of fluids I got in the er, it's at least a productive cough, not just a dry hack. I am having a very hard time catching my breath, but am not in a position to go back to the doctor right now with transportation. Picking up new antibiotics tomorrow and hoping for the best.

Lol, I've probably gone through about 1/2 cup of honey since yesterday evening eating spoonfuls of it to coat. My doctors are very hesitant to give me an inhaler because my tachy is so nutty sometimes. Just sitting up yesterday shot it to 122, and it wasn't backing down for nada. I'm planning on trying to take a bubble bath tonight with this spearmint/euclylitus body wash I have. I showered with it and it seemed to help a bit, maybe just enjoying a good soak with it will help too.

I currently am fighting bronchitis, and am coughing my head off. It doesn't help that I had an allergic reaction to the first antibiotic they gave me (near anaphylactic to azithromycin, still trying to recover from that), but I am coughing so bad, and that is setting of some of my syncope issues. They had me on tessalon perles, but are afraid that was part of the reaction, so I'm a bit afraid to take something that hard core. What do you use for coughing? I've also been using Vicks vapor rub on my chest, warm tea and honey, and the hottest showers I can tolerate. Something has to give, lol...

Yep, except it's all over, I play drums in church, congas and bongos, so I use my hands, and it's the most excruciating thing. Taking a shower is horrible, it feels like glass and fire.

Okay, I broke down and started a game of Words with you Mike... I say broke down, in this house, Words with Friends is some sort of evil according to my friend who plays scrabble with me, lol.

I've ended up with bronchitis again here. I had it in end of December, beginning of January, and that started a horrible downward spiral for the entire month that ended me up in the hospital for a few days because everything else got out of whack. I got on antibiotics yesterday after I spent a few hours on the floor passed out, so I'm hoping I caught it earlier than last time, but it still knocks me for a loop. I've done popped something in my back from coughing so much, so its spasming now, my blood pressure is everywhere, its hard to breath, my head and entire body hurt, and my meds are off because I am skipping midodrine so I can allow myself to lay down and rest, so its hard to get going again. Stuff I would have just laughed at before POTS became part of my life, now knocks me for a loop, and its hard to handle mentally. I keep thinking of all this stuff I want and need to do, and the body is going "nope!" Just makes me really mad. get to feeling better ya'll.

All i know is I drink and it goes right through me within 15 minutes, no matter how little I drink at a time, spread out over whatever time. I have IV hydration, and I'm not losing it nearly as fast, and I feel 10 times better.

Yeah, I heard that too, and that's why I asked after my diagnosis if the ablations possibly set this off, that I've had it for a while. One doc said yes, one said no. All I know is I feel everything, so it's unnerving, the meds they had me on to control the pvcs made them worse (I believe they were beta blockers), and it was miserable. He seems Iike a really nice guy, and he def seems involved in getting me better, so that makes me very happy at this point.

Unfortunately not with Dr Grubb, but apparently according to my power of attorney and friend who was calling doctors offices when I was in hospital, I am still in line to see him, just haven't gotten a date yet. I told him yesterday, I will be keeping that one, because we fought so hard for it. This was a new local guy since my other passed away, and the office had started to really give me a negative vibe about everything. My gp thought highly of this gentleman, so I thought since I still need to have a cardio person in my repertoire I would give him a try. He was really nice, but shocked at how everything had gone about. Wish I could have gotten some "yes, were gonna do this" rather than waiting, but it do understand why, and I'm fine with it. I initially said no more tests, but an echo isn't bad, I've had two, and if this shows my heart is fine enough to start a cardiac rehab program, I'm all for it.

That they have. My mom has one for severe bradycardia, and she has three leads that control different parts, and it's just all sorts of technical, lol. The couple things I wish I did get out of this visit were a script for Iv hydration therapy, and some sort of cardio rehab to get back on my feet a bit better, but I can understand his hesitance to jump right in without knowing fully everything that has gone on since my diagnosis. I have been told to contact if everything becomes worse, and I think with the summer getting ready to start, I can see this happening, if I keep getting sick like I am right now, I can see this happening... Just back to one day at a time.

ICD was what he suggested I believe, he just used the long words for it (Inplantable cardiac defibrillator).

He gave a specific name for it, but it apparently helps with tachy getting out of control. I wish I could remember the name, I was furiously typing info out as we were talking, and it was easier to type pacemaker than the long name. I know I've heard of some pots patients having one implanted. It was a weird convo, because I hadn't heard about it until recently, and I still don't think I'm quite there, but he is saying I was on beta blockers before my ablations, and since I didn't respond to them like they had wanted, they wouldn't work now in my case either. This visit was really okay, except for how I felt, which is kinda yucky because I've got a bit of a cold or something going, I'm worn out from yesterday (Monday is a recover day from church), and I had to travel about an hour to this appointment (but now that I'm established, he comes to my town every other Monday, so now I can see him here, unless there's an emergency). I came home and just crashed.

New cardiologist appointment this morning was fast, furious, and kinda shocking. As of right now, I am his most severe POTS case. While he isn't saying my cardiologist that was in charge of my care (the gentleman who passed away in January and his successor) mismanaged my care, he's shocked at how everyone was the definition of insanity: doing the same things over and over, expecting different results. He was actually kinda miffed about how Cleveland treated my care, with not offering more suggestions, and by saying it was all in my head in my reports (the first transcription from the doctor mentioned somatization/conversion disorder being in the diagnosis, but these were later debunked by my autonomic TTT which confirmed the POTS, but they kept saying it was from deconditioning). I told him with in regards to Cleveland, I thought they did okay, although strenuous, but I kinda wished there was something else they could offered as well, but my previous office had made it clear, they were really not interested in changing my therapies because "You still pass out, why would you want to change your medications?" He also wondered why since I was passing out all the time why a pacemaker was never given as an option, and I told him that my cardiologist said it was only beneficial for those with bradycardia, and with a HR of 115 just sitting, I was far from that, never mind when I'm standing and it creeps towards 170 or more. He was shocked that he also put me in a wheelchair, but understood its a safety thing and agreed with how I use it at this time. At least with my working out, I'm doing something right, because some is better than none, but with my out of control tachycardia, going for a stroll around the house is enough to have me kissing tile. Was reminded to listen to my body, and get down the moment I feel symptoms hit (they do kinda frown upon sitting down in the middle of the walmart parking lot though!). So, echocardiogram on the 30th to check my heart structure (he doesn't think it's weak, but wants to gauge changes since my last two, and double check its strength), see him in July unless anything changes with the seasons. No driving clearance. Start counting my outs again (I just stopped because they can be so numerous), taking care of my body, come back in July after he's had some time to get all my files from everyone, review it, and see if there's a pattern from there to now with everything (he even is asking for my ablation records, in case something got screwed up there, since I have been told by one hospital its possible the ablations set this off, like it was underlying). If things get too unbearable, come back sooner, and he will see about maybe changing things. I don't want a pacemaker, but if it can get me to where I can work and have a life again, bring it on. July will be one year since I last drove, since I last had a job, and its just so overwhelming with everything. I know POTS is in my life now, its time to get this thing managed better. At least so far he doesn't sound like he's backing down from the challenge, I am currently his worst POTS case he's ever seen. Just had to share with people who know how it feels.

Guess I know what I'll be looking into soon! I love to bake, and right now, I just bake for everyone else because I pick and chose if its worth the pain and illness afterwards. Baking bread is something I do a couple times a month, it would be nice to bake some I could enjoy too, as well as my brownie recipes and such.

I saw a nutribullet on sale for $99 tonight at the store. Seriously thinking of asking dad to help get if it might help get some healthier stuff in me. I love this post, it's been so informational!

Loll sorry I wasn't clear, but yeah, all of those. Kiang Arthur makes a gluten free flour?

That is an awesome documentary... I watched it a bit ago and found it fascinating.

Happy Passover to you! And def thanks for the laugh... That sounds like something I would do.

Ouch Goschi! That made me hurt for you just reading it. I tend to sleep in the fetal position, which doesn't help my cramps when my potassium is low.