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MTRJ75

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About MTRJ75

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  1. Yup, automatic still not good enough. What does it take? I’m just worried there may not be a government in 18 months the way things are going in the country at this point.
  2. The second attempt has been more comic than the first. I received the same large packet of questions to fill out on May 19th (Tue). It said the response must be received within 10 days of the date on the letter, which was May 13th unless I notify them otherwise. I called that day and said this is going to take me several days to fill out as I can only write or type a page or two per day. Finished it on that Saturday, but with the holiday, wasn't able to mail it out until Tuesday May 26th. Today, May 30th, I got a denial letter dated Thursday May 28th. Considering their packet took several days to get to me, I'm under the impression they made this decision without even getting my responses to their questions. The kicker..."An independent physician" (who no doubt knows nothing about autonomic dysfunction "has determined that my AUTOMATIC DYSFUNCTION is not severe enough to meet our requirements at this time." That's brutal. Even if I had AUTOMATIC dysfunction, I still wouldn't qualify. I had consulted with disability advocate group, who said I had to try again and then contact them again after the next denial. So I'll be talking to them Monday.
  3. I'm not sure how this can help us, but it seems important and was recently posted on the Dys Int FB page. https://au.finance.yahoo.com/news/first-3d-map-heart-neurons-153000974.html Maybe it will lead to a better understanding of PVCs?
  4. A couple of years ago, I was doing 30-45 minute workouts and then had to cut the workouts in half and then even less than that, but was still shaking and sweating profusely afterwards. Couldn't understand why I was losing strength and stamina when I should have been building it. Pistol is right, as usual, and even as I've felt a bit better these last few months, I'm still having great difficulty finding a level of physical activity that doesn't set me off and cause me to regress.
  5. Thank you so much for this explanation. It drives me nuts when I can't figure out why certain things are happening or what is happening in my body to make them happen. This makes a ton of sense. I've been on an off claritin and other anti-histamines several times over the years with little benefit and often making Sjogren's symptoms worse for me. As I've felt a bit better over the last couple of months, the bounding pulse still makes it difficult to fall asleep every night. It's more annoying than concerning for me right now, but I've never noticed if the anti-histamines helped with that particular issue. May be time to experiment again. And to respond to the original question in this post. Yes, it's not one of my more concerning symptoms if it's not in tandem with racing or skipping, but I can generally feel a bounding pulse in many parts of my body throughout the today. At the very least, it's always a factor when lying down.
  6. I've now been mostly house bound for almost two years and seeing everyone around me lose their minds a few weeks into it, I tell them a month or two is nothing. It took me a full year to lose my mind. The only problems have been getting regular food deliveries and what's going to happen if I physically need to see a doctor. Strangely enough, I'd been feeling a lot better since this started, though not as much this week. I almost considered starting to exercise again, but then realized I'd be in a h*** of a predicament if I put myself in a situation where I need fluids. But otherwise I feel like I've been preparing for this for years.
  7. @Pistol Ironically if she stayed home, there would be no reason for my mother to be there to watch the kid. I'm planning on doing all grocery shopping on line with deliveries. Thankful that's available in my area.
  8. There are now two cases in my town in New Jersey. I'm all ready to shut myself in for about two months. My real fear is my 75 year-old mother, who is a smoker (making her one of the highest risks) and is with me 3-4 days per week. She's with my sister the other 3-4 days, who lives a few miles away and has a 5 year-old. She thinks she can beat this thing by spraying lysol on everything and says she's not allowed to work from home. I've been fighting with her since yesterday about not wanting to send my mother back over there while her kid is still in day care 3 days per week and with her father doing who knows what on weekends. After the Tom Hanks announcement last night and the NBA players catching it, along with the two in my town of unknown origin, I've gone from being cautious to very alarmed.
  9. I certainly do find that abstaining from measuring things that aren't currently bothering me can greatly reduce my stress levels.
  10. I realized it wasn't worth the effort with my PCP because there was nothing he had that would have helped my cause anyway. The cardio and neuro were the two most important and very cooperative. Two days later, while this is the part that continues to infuriate me the most, it's also beginning to feel like my biggest out because they are acknowledging the condition. I just have to get them to realize they're completely ignorant about the "recovery period". I know they didn't get that from my cardiologist because she suffers minor autonomic issues herself.
  11. The letter said different states and programs have different rules, but the universal thing seems to be a misunderstanding of invisible chronic illnesses. Thankfully you were able to find compassionate judges and were able to articulate your cases well enough. I'm not even sure I could do that depending on the day. I was hoping to avoid having to give away a good chunk of any back money I get because I know it's not going to be a lot anyway, but I need someone who has the know how and energy to push through and find the holes in the system. @Pistol In my case, my current PCP is working more against me than for me. He's my 4th one in five years due to insurance issues and there really isn't anyone else in the immediate area who takes my insurance, so I'm stuck for the time being. He called me in for an appointment when he got the letter from disability and gave me the letter. Said he wasn't going to send them all his notes. It was too much. From the correspondence I got from the disability office, I'm not sure he ever sent them anything, which probably didn't mean much since he doesn't even know what POTS or dysautonomia are.
  12. Got my denial notice from disability today. Not unexpected. I knew I was screwed when I went for their independent doctor's exam, which was a bit of a horror show. Not sure whether it was fortunate or unfortunate I wasn't at my worst that day because if I were, I wouldn't have been able to get there. But none the less, I was exhausted an shaking internally by the time I got to see the doctor, two hours after arriving. I actually considered it a positive sign when he didn't ask me what dysautonomia was, but he did write it down as autonomic dysautonomia...as if there were another kind. The entire examination had no relevance to dysautonomia. I was asked to move my limbs forward, bend, and put my hands above my head. He bent my wrists and knees without pain. They took a lying EKG and said it was fine. I asked if he's like to see the any of the ones in my ipad which weren't okay and wondered what kind of jobs I could do lying down. He asked me who did the house work. I responded that I just don't let anyone in the house anymore, but he was adamant that someone had to do the house work. Who vacuumed? Nobody. Somebody had to vacuum. Who vacuumed? When was the last time you vacuumed a room? How far can you walk? I don't know. How far can you walk? It changes every hour and it's not necessarily the walking itself, but the after effects. On a good day, can you ever walk a block? Maybe, but I won't be able to move for an hour or so afterward. Can you shower by yourself? I can shower, I may be able to walk a block and I may be able to vacuum a room. I may be able to do any one of those things on a good day, but just one and then do nothing but lay on the couch for hours afterward. I absolutely knew that the line of questioning was almost discriminatory against dysautonomia and was expecting this rejection letter which is highlighted by such statements as... - my age was a significant consideration because I people evidently can't develop chronic conditions before a certain age. - "Your limbs have pain. However, it does not limit my ability to move about and use your limbs." Absolutely wrong. - "You have experienced heart problems. However, following a recovery period, you should be able to work." This is great news! I'm going to recover from all the cardiac issues. They just don't tell me how long this is going to take. So now I have 60 days to appeal. I guess my question is if anyone knows of any lawyers or groups that can help people with our condition with these claims and appeals, considering the conditions work against us. Ideally, what I'd like to do is challenge the whole system to change how conditions like ours are discriminated against by the current process, but I doubt anyone is going to want to take on that fight or that I'd have the energy to do it anyway.
  13. Probably because that guy who "invented" his own experimental adrenal surgery was in the news a few months ago. There was a thread or two about him on here I think. People I knew who don't understand anything about my condition were texting me that his case sounded a lot like mine.
  14. I don't have an exact number right now, but mine can get pretty narrow when standing up on occasion. Obviously, doctors have never been concerned. I actually had one in the ER that was 125/106 and the nurse said "what the h*** is that?". She thought it was a bad reading. I tried to convince her it wasn't, but she just threw out the reading and did it again a few minutes later and it was closer to normal.
  15. I think it's more a safety thing if someone passes out or were going to fall. The way my cardio and neuro test me all the time is lying down, sitting than standing for a few minutes each. They say they could do the table test and potentially make me pass out, but it wouldn't change how I'm treated. Although, I may have to at some point if the diagnoses isn't being accepted in certain places without the TTT.
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