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bunny

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Everything posted by bunny

  1. This is so me... I try to schedule it so that I'm able to lay down afterwards. I often feel like I've just gone through an entire exercise session. I do find that the squatty potty helps with how much 'effort' it takes, but I still find myself exhausted afterwards.
  2. I've been through quite a bit of ugly things in my life, including plenty of health problems. Dysautonomia's a breeze compared to what I've been through. I wasn't supposed to make it to be 19, then 20, 25, 30, etc. No way I'd ever see 40, so we deferred a lot of health issues figuring I wasn't going to be around long enough for it to matter. Well, I made it... so now I'm having to catch up on all of the 'deferred maintenance.' I started working when I was 12, worked 60-100 hours/week throughout high school, and continued into my adult life that way. If I wasn't in a hospital bed, I was working. A few thoughts from my experiences: 1) Do not let get caught up by your diagnoses/diseases. REFUSE to accept it. So often I've seen people assume their disease and let it become their identity. I've never seen anyone get better that way. Just because you broke a bone doesn't mean it's broken for life, or because you got the flu you've got flu for life. Doctors are often wrong. Make it a point to intentionally prove them wrong. 2) Focus on what still works rather than what doesn't. My body's been through a lot and doesn't exactly work the way it's supposed to. If I focused on my health issues, I'd be a depressed mess. At one point in my life, I was running up to 100 miles a week, hanging 1000' feet in the air of steel beams, etc. I probably couldn't even do a 5K right now, my body's shot, and I have plenty of brain damage, but I don't let myself dwell on it. 3) Pace yourself. Be flexible. Some days I'm more productive than others. Some days my body's more capable than others. I go with the flow and try to work my schedule around it. I always have more things to do at work than time to do them, so plenty of tasks to choose from. Sometimes I just need to modify how I plan on doing something. 4) Keep pushing your boundaries. Until you hit the brick wall, you don't really know where it is. Sometimes I'm capable of a lot more than I give myself credit for. Other times I push myself so hard that I physically collapse, and that's fine with me. My friends aren't as thrilled with the latter as I am. 5) Have goals. Both short-term (doable) and long-term (dream the impossible). Some days just not passing out is the goal. Every job I've ever held has been someone's dream job. For me they were stepping stones. I've been putting 5Ks I'd like to run on the calendar for the past year or so. I've not run any yet, but I'm determined that I will. 6) Leave the house at least once a day. Make sure you interact with others at least every few days (Facebook/texting doesn't count). Very few humans can truly live alone. 7) Do what you like doing! What would you be willing to do for free / volunteer? DO it. If you can find a way to somehow make money while doing it, even better. As an aside, I wouldn't buy a Macbook even though I'm typing this on one. You can buy off-lease enterprise Thinkpads all day for a fraction of their original value. In fact, I'm replacing this well-worn MBP with a Thinkpad soon. Linux/Windows are where business is at these days, even in the creative space.
  3. Barometric pressure doesn't affect me at all, BUT high humidity absolutely kills me. Even indoors, high humidity affects me. I'll actually do worse inside a building where the AC is dying and it's cool/damp than outside in the Florida heat. Dehumidifiers are my friend. My body temperature tends to run on the low side and I go into hypothermia very easily, so places with freezing temperatures don't agree with me either. I got sent to Alaska for work a few years back during summer and wrapped up right when the termination dust (first snowfall in the mountains) hit. It was unbelievable! I had tons of energy. Dizziness as minimal and I didn't even pass out the whole time. Even by midnight, I was still full of energy. I was outdoors and active every moment I could, which is completely uncharacteristic of me. I even was hiking up the side of mountains, which is *definitely not* me. I felt alive like I never have before. Unfortunately, it's Alaska, so it gets beyond cold, otherwise I would have moved in a heartbeat. My fiancé gets headaches from changes in barometric pressure, and she definitely gets plenty of headaches here in Florida due to it.
  4. It's mid-February as I'm writing this, but as of now, sitting in Florida, USA, I'm ABSOLUTELY NOT worried. In fact, I'm planning on going to Disney this weekend, no worries at all. Would I be traveling to China right now? No. Asia? Depends. US/Europe/Oz? Sure. Let's first do a little background on security. First, two definitions: 1) Threat -- a person or thing that can cause damage or danger. ex: a tornado hitting your house. 2) Risk -- the probability that something undesirable will happen. ex: You see thunderstorms in the area and tornadoes were reported from the same storm front earlier in the day. Some perspective is in order here. People see threats everywhere...but humans are very poor judges of risk. People obsessively worry about things like terrorist attacks and natural disasters, when reality says they're more likely to get injured/die from regular injuries in their own homes. Many people get anxious about air travel and crashes, when the real danger is the drive to the airport. BUT...to quote one of my professors who admitted that his research was bull****, "There's no money in telling people that everything's fine." That's true of both academia and the media... and business as well. There's big money to be made off of fear. Back to the matter at hand: As of today (19 Feb), there's a 2.67% death rate of those infected. ~2,000 deaths world-wide. Again, some perspective: 30,000 elderly people in the USA alone DIED from falls in 2016. The CDC says 14,000 people have died in the USA from the good 'ol regular season influenza we have every year. 186 pediatric patients died last year due to flu. (For reference, there's been 135 people killed in US school shootings since 1764, the first recorded school shooting, which pre-dates the USA.) For as much attention and $$$ school shootings get, we really would be better-off if we put the effort and $ into eliminating the flu. In the past 5 days, the number of new cases has been slowing down. Too soon to say if it's peaked, but it's encouraging. If this trend continues for a week or so, I wouldn't be surprised if by June we don't hear about the Coronavirus at all. Anyone remember SARS? MERS? Swine Flu? Bird flu? As always, keeping your hands clean (use real soap & water whenever possible -- the alcohol-based hand sanitizers don't work anywhere near as well in real life as they do on lab tests), avoid touching your eyes/mouth with your hands, etc. Enjoy life and don't sweat it! Emotions can't be trusted when it comes to this.
  5. I've had some form of tinnitus for as long as I can remember. In my childhood it was an occasional high-pitch ringing and I'd get the pulsatile whooshing at times, usually when I'm not feeling well. A few years back after taking vancomycin, the ringing became worse and constant in both ears, with my right ear being worse. I now have the constant sound of a jet engine whine in that ear. I still get the pulsatile when I'm not feeling good.
  6. Just because someone of authority puts a form in front of you doesn't mean you need to sign/agree to it. Even at that, feel free to cross out and modify anything you disagree with. In the USA, binding arbitration (taking away your rights to use the court system) is gaining traction, even at medical practices. More than once I've refused to fill out the form and had no repercussions from it. If anything, the one interaction led to an interesting discussion with the front-office staff who never really thought about it before.
  7. My body seems overly sensitive to meds as well. With many meds, I'll start vomiting within the first hour of taking them. They even did blind/placebo trials with me, even tried hiding meds in food, and I only reacted to the live drugs, so it certainly wasn't something psychological with me. When it came to the cardiac/BP meds, I either threw up or my body would try to overcompensate to bring things back to where it though they should be. As far as my body's concerned, it thinks it's doing the right thing. Ultimately, we stopped all of the meds. My body may be doing the wrong things, but I feel better and am more functional without them.
  8. I can go from ~120bpm to ~60bpm in a matter of a couple of beats, BUT, that's usually after exercise. My body doesn't transition from active to idle gracefully. Digestion can do the reverse to me, although it usually ramps up over a period of 10-20 seconds when that kicks in.
  9. When I lay flat, there's a good 2-2.5" between my neck and whatever I'm laying on, with only the occiput of my head & shoulders carrying weight. If I'm propped up a bit, I do feel more comfortable, although I'll always flip over to one side, even if just reclining.
  10. I wish I had a non-existent one. The roof of my mouth, especially towards the back, around the upper rear teeth, and anything prodding around the base of my tongue will cause a very strong gag reflex in me. Had a lot of fun a the Dentist's office this year that's reminded me just how strongly mine works.
  11. I get this as well, usually when I'm not feeling too good. My vision tends to darken more with the pulse wave than anything else. When it gets to this point, I'm pretty close to the point where I'm looking for a flat surface to lay down on before my body does it for me.
  12. I'm just curious if anyone else gets dizzy if they lay flat on their back? I know dentist chairs in certain positions will get me very dizzy and DEXA scans can as well when they won't let me use a pillow. I have both a Dental appointment and DEXA scan next week which reminded me of this topic. Likewise, I normally sleep on my side as it just doesn't feel comfortable for me to be on my back.
  13. I've never heard this... I remember when I first was dx'd with NCS/POTS and many other little things, my cardiologist was pushing hard for a pacemaker/implantable defib. And I do mean, pushing HARD, like needs to be done immediately or YOU WILL DIE!!!! I've coded before for other non-dysautonomia reasons, and I certainly was in much better health than then. After doing some research and writing to the researchers of published articles, the one responded something along the lines of, "While passing out and temporary asystole are visually alarming, we've never actually had a patient die from this." He did say that some of the co-morbidities might have negative effects, but I wasn't going to drop dead from POTS. It was a marked difference from what my own cardiologist was pushing. I skipped the pacemaker/defib surgery. That was 20 years ago. I'm still here. That would have been at least 4 surgeries I've avoided. (1 for the original pacemaker + 3 replacement pacemakers/batteries) Still very happy with that decision and thankful for the research Dr's advice.
  14. The big question is, "Does it matter?" What are you hoping to gain with/without having an abnormality? What are the consequences of treating it? What are the consequences of ignoring it? Even if you manage to get an official diagnosis of something, are you any further ahead? Trust me, the number of disappointing Dr appointments way outnumbers the positive ones for me. My body was trashed 20+ years ago due to severe anorexia. Nothing about it really works right. Diagnoses and labels can be helpful, but they can also get in the way. I stopped worrying about them many years ago. Validation is nice, but I only bother with it when it's going to pose a threat to my health. Case in point: Last week with an oral surgery consult. Bradycardia & hypotension are on the typed, multi-page medical history sheet I hand over to every new Dr I see. I'm already apprehensive of doing surgery, have a long history of bad experiences with doctors, have a past history of abuse (and saw a dental chair with restraints on it as they sat me in the consult exam room).. you bet my BP and pulse were through the roof. The nurse wasn't buying the bradycardia & hypotension until I show her my BP reading from that morning -- 83/39, p45. Yep, that took general anesthesia & sedation right off the table. Otherwise, I would have just brushed her off. I pass out (among other issues). No big deal. It happens. It's part of "normal" life for me. It's not too different from someone who has epilepsy, or someone who is an amputee. To the world, their bodies aren't "normal", but that doesn't change their situation. They've been dealt the cards they have. It's up to them to make the most of it. Sometimes problems are easily fixable. Sometimes the treatments put you in worse shape and can cause permanent damage to your body. Sometimes doing nothing really is the best approach.
  15. For me it hasn't been as important as to what I'm drinking as much as that I keep drinking regularly. I can handle a soda or sugary drink, but only one at a time. Instead, I normally (try) to go for tea or water. What has been helpful are the Ozark Trail tumblers (knock-off Yeti) I picked up at Walmart. I'm much happier drinking ice cold water and these will keep it cold with ice for 24+ hours. With one of those full and nearby, I'm constantly reaching for it and drinking water. One luxury I do enjoy is squeezing my own orange juice. There's no comparison between real orange juice and the artificially perfumed junk they sell in the stores. Not even close. Not even the same color, taste, or smell. At least where I'm at, it's also cheaper to make the real thing too.
  16. Don't be afraid to fire your doctors. As unpleasant and scary POTS / dysautonomia can be, it's not fatal. There *ARE* good doctors out there. If I did everything the doctors wanted me to do over the years, I would have: 1) An implanted defib. The Dr tried to pressure me into this, saying I'd "DIE without doing this immediately!" That was 20+ years ago. I'm not dead yet. 2) An implanted pacemaker. 3) At least 3 surgeries to replace the dead batteries in the pacemaker 4) Had my small intestine removed 5) Had my large intestine removed 6) Have a colostomy bag 7) Be unable to work due to how the meds made me feel 8 ) Be in a wheelchair 9) Be dead. I've had doctors' treatment plans cause me to code while I was in the hospital. I told the Dr in advance I thought this was a bad idea, he insisted it was the standard protocol.... I coded about 18 hours later. I have a copy of the 2-lead ECG where I flat-lined framed. I've done none of these things and my current quality of life is infinitely better than it would have been with any of aforementioned things. Sure, I'm symptomatic at times, but it's still a heck of a lot more enjoyable. Doctors, like politicians, don't have to live with and often don't think of the unintended consequences of their actions. Kind, well-meaning doctors aren't always right. Even esteemed experts in the field can be wrong (My #9 above was supposed to be one of the top 5 Drs in his field in the USA...) Some of the best Drs I've had over the years weren't experts, but they could think logically and cared enough to read through the literature to come up with solutions. I had a GP who was superior in knowledge to specialists. YOU are the only one who knows how you feel and you're the one who has to live with these medical decisions. If need be, take a friend with you for support and to help you speak up and advocate for you. It's YOUR body, YOUR decision.
  17. @StayAtHomeMom: That would definitely explain it. Bread does a number on my mother as well. She doesn't have celiac; instead it's simply the gut bacteria she currently has.
  18. I'm usually rough when I first wake up (very low BP/pulse). Once my BP starts to rise, I'm able to get out of bed and function. I usually try to do light meals during the daytime and save my main meal for dinner, as a heavy meal will absolutely exhaust me in ~30-60 minutes after eating. As the day goes on and I get more tired, I become more symptomatic. Sometimes by the time I get back home/to the hotel from work, I'm looking for the nearest horizontal surface to lie down on. At that point even the floor looks good. If I pace myself throughout the day, taking little breaks here & there, I'm able to last the full day. If I'm going the full time, I run out of steam mid-afternoon. I've also sometimes been able to stave off an energy lull by walking for a bit, BUT I have to catch it early, otherwise this becomes the exact opposite of what I should be doing and I quickly go downhill.
  19. Gastrointestinal bloating is caused by the fermentation of bacteria in the gut. The human body is incapable of producing gas in the gut...but the bacteria within can be quite prolific with it, especially if you get an imbalance. Such imbalances can be caused by illnesses (flu & such), bowel preps for colonoscopies, stress, antibiotics, travel, food poisoning, etc. I'm willing to bet if you think about it, you can probably narrow down what might have caused this to happen. The key to fixing it is figuring out which foods the gassy bacteria are most attracted to and avoiding them for a bit. As StayAtHomeMom suggested, probiotics can be helpful. Gas relief meds can help as well. Any "real" food (ie: not processed, doesn't come in a box) like fresh veg, unprocessed meats, soft (real) cheese, fermented foods, are all good places for this. Your um..gas.. might be able to tell you what's wrong. If it's sulfur-y, cut back on the meats. If it's not, cut back on the sugars, carbs, and fruits. Sometimes more extreme means are needed to straighten things out.
  20. Fun facts: 1) There is no "safe" level of ionizing radiation (x-ray,CT). Every single x-ray and CT scan all adds to your risk of cancer and other nasty things. 2) Ionizing radiation damage is cumulative. 3) In the USA, no doctor is responsible for the cumulative x-ray dose a patient receives. This is different in other countries where the radiologist is required to look up a patient's past history before proceeding. Back in the day at a med school lecture, I remember a radiologist giving a talk about ionizing radiation (x-ray, CT) safety. His talk came from his own personal experience when his college-aged daughter was involved in a serious car accident while off at college. In the time it took him to get to the out-of-state hospital, his daughter had already received NINE (9) CT scans. He was appalled. He even confronted the head of radiology for the hospital who was rather aloof about the whole thing. He refused to allow any further radiological studies on his daughter. This led him to researching exposure limits & such. It's been ~10+ years since I attended that lecture, BUT I recall the magic # he came up with was between 5-10 CT scans for your entire lifetime. Once you get beyond that, you're starting to talk about exposure levels similar to those of Hiroshima survivors. The variation depends upon what type of imaging scans you're having. Conventional x-rays (dental (NOT 3D dental -- those are CT), chest x-rays, etc.) are the lowest dose. CT scans are higher, with small areas (head, arm, etc.) being medium-ish and abdomen/colon/etc being much higher. How much more risk does multiple CT scans put you at? IIRC, it's ~15% once you get past 5 CTs. Personally, I've had one abdominal CT and am going to keep it that way unless it's life-or-death.
  21. I wish I had such an option - I have a girlfriend but we aren't married yet so there won't be any of that going on until then. I often travel for work and have become spoiled by the seemingly endless supply of steaming hot water at hotels, so I duplicated it at home. I believe I have about 30 minutes' worth of hot water at home before it starts to cool off. The Speakman Anystream showerheads are pure bliss. I can't handle high humidity, no matter the temperature. I've been in buildings with failing aircons that were so humid that I had to go outside. I never considered myself an outdoors person and instead prefer the confines of my climate controlled world. Then this summer my job took me to Alaska. I was spending every free moment outdoors! I even went hiking, which was something I never would even think of doing. People who know me were wondering if I'd flipped my lid. Nope, just a more agreeable climate. At the same time, I can't do cold. My body temperature normally runs around 35.5C and drops a bit shortly after eating. This doesn't leave me with much of a buffer between functioning and hypothermia and I've gotten in trouble more than a few times. Pride is a tough cookie to crack. Occasionally I've had a hotel room with one and they are helpful. At the same time, I try to live as normal of a life as possible and stubbornly try to tough it out as long as I can. There were probably many tools which would be beneficial for me to use, but my pride gets in the way. I have a feeling that will be addressed once I'm married.
  22. My normal is about 35.5C, and it's also where I feel the best. Have you had any thyroid tests performed?
  23. They used magnesium citrate with me, half the regular dosage. It wasn't pleasant but I made it. Given what happened with you and that you've already had two prior colonoscopies, I would be asking if a 3rd was absolutely necessary and what they think they'll find this time that they couldn't find the past 2 times. I don't know your medical history, but sometimes it does help to call a time out and reevaluate the strategy.
  24. Awww... I can sympathize. I love a long hot bath or long steamy shower, but my body does not! I was blessed with a major hotel room upgrade last week (cheapest room booked, upgraded to a 2 bedroom, 2 bath with kitchen suite that had a giant whirlpool tub). It's probably the first bath I've taken in ~2-3 years. It was heavenly, BUT, I also was starting to feel iffy and immediately started running cold water. The recovery wasn't too bad this time from it. Like @toomanyproblems, a space heater in the bathroom is an essential for me, even in the summertime. My normal body temperature is low to begin with, let a lone evaporation of water off my skin. One thing I've discovered recently is that if I keep an elbow against the wall when showering, I seem to be able to control my balance better. Much better than just using my hand. I'm not sure if this tip will help anyone else, but I put it out here for others to try.
  25. @Pistol: Thanks for that info. I've had tremors over the years but have a family history of Parkinson's, so I always blamed it on that and figured I'd deal with it later. Now I have something possibly less sinister to blame it on.
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