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blizzard2014

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Everything posted by blizzard2014

  1. Pistol, I see a pain management doctor every month for the leg. He told me right off the bat that there is absolutely nothing he can do for me other than to give me meds. You can't fix circulation damage from injections or other therapy. He stopped seeing me personally and has me see his PA for med refills. He gives me low doses of Norco and muscle relaxers for the night when my leg cramps up really bad. But he refuses to fill out disability paperwork or write this down for me. He says it's up to my surgeon to do this. Leg surgeon said surgery cannot fix pain, only surgery if my leg turns black, or I will lose it. But he will not fill out a detailed letter. I can't just go through tens and 20's of doctors looking for one to write letters or put in their notes that my condition is bad. My own blood doc said I would be in pain for the rest of my life, but she refuses to write that down in her notes. She is against disability. The nurses I see are more knowledgeable than the docs. They tell me that once you have huge blood clots in legs, you will have pain for the rest of your life and be on pain meds. I guess they see a lot of patients in my condition.
  2. I keep on dropping doctors because they do not listen to the patient. If I had something to sedate me, I could fall asleep and then the machine not bother me. I also have chronic pain and that is another thing that wires me up at night. Even Ambien only works for a few hours and then wears off for me. I guess in a way I am doomed with the low oxygens at night. I might ask for straight up oxygen take for at night because in the hospital with PE's I did not drop into the 80's at night with the supplemental oxygen. But my GP was not overly-concerned about the low oxygen, says everyone's oxygen goes low at night. Just hard to find good help with these issues. If the machine had a lower pressure like when it ramps up half way and it around 15 pressure, it is fine. I just cannot tolerate the high pressure, but without the high pressure, it will not work. A pressure level of 15 does absolutely nothing for me. It would be a waste of time even trying.
  3. yeah, most of my hypopneas happened during rem sleep. Well they kept on knocking me out of REM sleep. The doc was unwilling to work with me on giving me anxiety meds so I just dropped him and never went back. I am kind of claustrophobic and the mask makes me feel like I'm suffocating. The doc also did not want to lower pressure settings because it would not alleviate the events. On my sleep study, when they titrated the pressures, I had symptoms all the way up until the last 30 minutes of the test when they forced the highest level of pressure into my mouth. I have severe resistance in my throat from what the doc says. Any lower pressure would not work. Also, they put me on BIPAP with a pre-programmed breathing loop. That is because sometimes I do not breathe, so the machine forces me to breathe automatically every few seconds. I hate the thing so much It made me fill out a DNR for no respiratory machines. It must be h*** living on mechanical breathing. I may try the machine again, but with the hyperpots, it just causes me to stay awake. I can be dead tired and as soon as that machine goes off, I am wired up like crazy. I had to take sleeping pills at the sleep lab and those barely worked.
  4. The ER doc and my doc advised me not to take Clonidine unless my BP was over 160 on the high number, and 100 on the low number. But I take them even when not that high. They really have never seen something as weird as what I have going on.
  5. Wow, Pistol. I have never taken seizures from the high BP, but the front, top of head, and eyes sometimes feel like they're going to pop out of my head. I get this feeling like I'm being tumbled in a washing machine due to the pressures rising and falling so rapidly. When people in the ER have high BP, they usually lower it gradually. We are going high and low so fast from changing positions that it has to be causing damage. Today I will just take more Clonidine before work and take it easy. My doctor still does not understand what's happening. He said it is due to stress and emotions, labeled it as liable hypertension. The ER doc said to stop working standing jobs and get work inside an office. I have been ill a lot on my days off lately so finding a good specialist has been slow going. Most cardio doc's don't even take me seriously when I ask them to check my BP when standing. But I will press forward. Just so frustrated because I worry if I over-medicate I will pass out when driving, or at work. There is no ratio to use like you do with insulin and no way to correct like with low blood sugar and eating sweets. If you over-shoot on BP meds, you can get into some serious trouble. That's why I want to just make target ranges.
  6. Amlodipine and Lisinopril were working good, but then my ankles swelled up and I could not put my shoes on. Now I take the Lisinopril and Clonidine. But sometimes this combinations works too well and gives me low BP, other times it's like taking a sugar pill.
  7. Right now my BP is 140/114. But it is 110/76 when sitting down. I'm just so frustrated with this. Maybe I need to remain seated for the rest of my life.
  8. Before I stopped smoking, I regularly had 3 month long lung infections coughing up gunk non-stop. I do not cough up gunk anymore, but chest always feels tight and congested like the gunk is still there, just not coming out. I know lung function tests are not accurate, so with a clear CT scan of lungs, I kind of doubt the COPD diagnosis. It might be something else. I also have a severe restrictive lung function pattern that I believe might be from backed up intestines pushing on my lungs and an enlarged right heart pressing on lungs causing a restricted pattern without pulmonary issues. Just hard to say what is what anymore.
  9. Here is a list of all my medical conditions Orthostatic Hypertension - diagnosed liable hypertension High heart rate - Intermittent Type 2 diabetes High cholesterol Enlarged right heart Sleep apnea Factor 2 blood clotting disorder Hughes Syndrome blood clotting disorder Chronic blood clots, pain, and swelling in right leg - listed as post thrombotic syndrome Blood clots in lungs COPD diagnosed by pulmonary function test Undiagnosed gut issues chronic pain syndrome neuritis recurrent bells palsy memory issues and brain fog Out of all this, the thing that disables me is the pain and swelling in my right leg. I can push through most everything else. The leg pain rules over everything I do. I tailor my entire life around a painful leg that zaps and sucks the life right out of me. Sometimes it hurts too much to even sit with the leg elevated and I have to lay back down. The second most disabling symptom is my gut issues. I ate a meal earlier today and stomach was bloated and in so much pain, I had to go to bed for six hours. Prior to that I was feeling fine. I knew better to eat the sandwich, but I let my huger get the better of me as I am a foodie. The third disabling symptom is the high BP and headaches. But all these can be controlled. The leg is on a slow decline that might end up with more mobility issues in the futures, or if one more round of leg clots happen, kiss walking behind possibly. My pulmonary function test is close to meeting a listing outright with FEV1 of 46, and it was not corrected with a breathing treatment. The breathing treatment actually made my FEV1 go lower. My lungs are so bad that simply smoking one cigarette leaves me sick and in bad all day. I had to quit through being forced to by being sick all of the time. That is what I have going on and also 20/100 vision in one eye from a possible blood clot, but doctors don't know how it got damaged. But apparently not enough to get disability.
  10. I'm sorry if I'm posting too many topics lately. I remember reading something on someone else's post about apnea's yesterday and I want to ask a question about this. I have had three sleep studies done and all of them have such different results. One shows very low Apnea at 8 events per hour. Another shows some apnea with a constant low oxygen level of 88 percent. I never go above 88 percent all night. The last study shows Moderate Apnea with 21 events per hour and some central apneas. I had trouble sleeping on all of these tests, so they are probably not accurate. All of this was corrected with the highest pressure setting they have on a BIPAP machine. They stopped all the apneas and my oxygen level went to 94 when sleeping. The study also shows that I spend over 70 percent of my sleep time in stage 2 sleep and almost no time in REM. I think it was like 1.7 percent of sleep time in REM. Most of my sleep time is spent in stage 1 and stage 2 sleep. Also no stage three sleep. I'm just wondering how all of this can tie into autonomic dysfunction. I showed some low heart rates and high ones, but no PVC's or other events were recorded. I tried to use the BIPAP machine with ramp up feature a few times but it just makes me an insomniac every time I put the mask on. My pressure settings are 24 I believe, the highest setting there is. I hate the thing so here it sits collecting dust. I would need a Xanax pill in order to be able to fall asleep with the mask on. I go for long periods of time not dreaming, then dream for days and days and days. Lately with my out of control BP, I am more on the restless side than anything else. Just wondering if it is real sleep apnea or just autonomic problems. What do you guys think?
  11. I have been having a rough week this week. Despite doubling up on meds for the last two days and even using Clonidine at night, my BP is still surging to 130/99 when standing. I really don't know what to do. I'm getting tired of this roller coaster ride. With my diabetes, I stopped micro-managing my blood sugar and just aim for target ranges. Should I do the same thing for BP? I mean, it's never going to be normal or behave. So, 130/99 is high, but not stroke level high. Maybe I should be glad with that and just aim for the big number under 140-150 and the smaller number under 100. I have been having headaches when standing and sitting as well. But sitting my BP is 109/80. I would not care about the standing spikes if I did not have a part time job. I am also getting that lightheaded wanting to pass out feeling, even when driving, but never pass out. I'm getting tired of this yoyo stuff. I went for a few weeks and just stopped checking my BP all together until I began to feel unwell and had to check it. I mean, something has to kill us. That's why I don't try and strive for perfect blood sugar numbers anymore. I'm not gonna sit here and spend my days correcting every little glitch in a body that is no longer functioning properly just so I can live a few extra years. It's like my body just goes all resistant to the medication. Same thing happens with Insulin. I go for weeks with one dose working wonders and then stops working, go higher, then bam get low blood sugar and need to lower the dose. Everything is constantly changing. It's not like the cholesterol pill, just take once a day and all is good. I wish I could dump all these meds and medical devices and be done with it all. But I feel worse without the meds. This condition is a crazy condition that does not like to cooperate.
  12. I don't notice a pattern, just when I began to have the severe constipation despite being on pain meds for 5 years and not having an issue. Pain meds took me from going to the bathroom 11 times a day to 3 times a day. Then all of a sudden locked up and then liquid movements, then locked up again. This all started about 2 years ago. This week it is a solid movement, then a gooey movement, then two liquid movements, then done. But still feel bloated and like I have to go to the bathroom. I prefer this over being locked up and throwing up. I have only thrown up huge amounts three times lately, but I feel like throwing up a lot. It is like someone is squeezing my throat and saliva starts to drip out. If I fight it long enough, it turns to a liquid movement and the nausea passes. For this week I attribute the movements to starting 500 mgs of Magnesium citrate per day. I believe it is helping me a lot. I already had a semi-solid movement today and waiting for the goo and then the liquid movements lol. Sorry for TIM, but it beats being backed up and having to lay in med. Oh, I do notice that when I sleep and lay in bed more, my bowels empty better/faster. Last week, I was sleeping 9 hours, then awake 6, then sleep 6, then awake nine, rotating in said order all week and it helped a lot.
  13. So,, if you burp up and taste 8-12 hour old food you ate, could be a problem? I wonder because sometimes I can barely eat a microwave meal and last night I ate a whole pizza, but I am paying for it now with bloated full stomach and cramps. But only ate like that because my constipation turned into over-activeness this week. BP is back out of control and bowels have sped up which I prefer over inactive bowels. I need to get checked out eventually. Little by little I guess.
  14. Exactly. Actually it is very hard to get a DOT renewed if you use Insulin. Forget about it if you are on pain medications. I would have to lie about all of my conditions to get a Medical card. I have been to two other doctors and they both were the same. One said he does not help his patients file for disability because it doesn't pay anything. Well, some people have no choice. A big problem is that the SSDI judge will go through these other not accurate medical records and then say he does not believe the new doc, because new doc is new and old doc has been seeing me for 6 years. This is not guaranteed to happen, but it will if I get another biased law judge. My attorney even told me that I had a good case and was very credible in my testimony, but that particular judge never awards cases unless you're dying. I will just continue on until I cant, then file again. This week has been the worst week ever. Five straight days of sleeping and feeling like crud. My darn meds stopped working and my BP is skyrocketing, but thank God not to stroke levels, but enough for me to have headaches and notice it. I hope I can fight through work in a few hours. I might have to re-assess this job. But once this part time job is gone, there is nothing left. Sometimes I wonder why even live like this. 40 years old living with moms barely able to work a part time job. One day I will be on the streets walking around with a huge bag of medicine. Just not a good life for anyone to have. If worse comes to worse and I have to drive again it's the government forcing me to do so in order to get meds and to feed myself. Just a shame it has to come to that in an advanced first world country.
  15. If I can only get my doc's to document stuff. It hurts just as much to stand up for me as it does to sit in a chair with both legs touching the floor. I spend all day with my right leg elevated on a cushion to prevent pain. Even then, some days, like today, it is painful just elevating it ang painful enough that the leg cannot get comfortable laying in bed. I had to double up on pain meds in order to numb the leg enough to tolerate the discomfort. But all my docs still insist that I can drive a semi-truck despite me explaining to them how messes up I am. One doc says it's just a minor annoyance. I don't really know who to turn to and all of my doctor notes are inaccurate saying I am working again and doing this again, things I never even said. They need a place where you go for a few days and they simple evaluate what you can do and then determine if you are disabled. I have full range of motion in my leg, but cannot climb with it or use it much. But no one asks or tests for that. They just test leg strength by testing range of motion. But my leg cannot carry me up the stairs. I'm just frustrated with this whole system here in the states.
  16. I'm not sure if that would cause dehydration or not. I can look online to see.
  17. Yeah meeting a blue book listing outright qualifies you instantly. Like having a FEV1 of 30 or less or something like that. If you have that proven on a documented pulmonary function test and then on the one the SSA sends you too, you qualify. The numbers can't be argued with. Same thing if you have pulmonary hypertension and are a certain number on the pressures like 35 or higher. Objective numbers in a certain range qualify you outright. You don't even need a judge hearing. I am close on the DLCO, but not completely there yet.
  18. I do not bend much because of bad leg. I get really messed up when I have to bend down and replace the soap dispensers in the sinks lol. If my boss only saw me gimping around the job site. I do not even have a doctor to back me for disability. All docs say to go back to driving trucks because it is a sit down job even though they know sitting cramped up in a truck will cause more blood clots. I need a doc to actually help me but do not have it and do not have the money to wait many years for SSDI. So, I push myself for now until it becomes so bad I can win the case outright. It's just a matter of time. I make 580 a month working and will make 850 on disability. I get help for food for another 200 a month, so it's like I'm on disability now and did not have to fight tooth and nail for it. My leg will get ulcers eventually the vascular doc said, standing on it a lot is just speeding up the process then I will qualify out right. I am still so mad from the judge treating me like a malingerer that I don't want to see SSDI again for a while.
  19. Yeah, sticky bloods, thick bloods is also another term for APS, Hughes Syndrome and it causes all of the cognitive symptoms. It cause muscle jerking, brain fog, forgetting words, balance problems, tinnitus, all because the bloods are too thick.
  20. Have you ever been tested for Antiphospholipid Antibody Syndrome "Hughes Syndrome!" A lot of people who have autonomic dysfunction also have this syndrome. It cause mental confusion and balance problems because of sticky blood. You can ask your doctor about trying a daily low dose aspirin to thin the blood, and if this helps, maybe you have sticky blood. But you need to discuss all of this with your doctor as a lot of medical issues can cause brain fog and balance issues. It's just something to look into.
  21. You need to ask your doc about trying Clonidine if he feels that would help you. I am not a doctor and cannot recommend one treatment over another, it's just something you might want to look into. Be careful though if you start using it, because if you take too much, your BP can drop too low. Clonidine is not a drug to play around with. It is a very small low mg pill, but it is very, very powerful.
  22. I use clonidine. I have adjusted to 1. mg a day now and then 10 mgs of Lisinopril and that evens my BP out. The only reason why my GP caught my high BP was because one or two times they had taken my BP right away after I had just walked into the exam room and my body did not have a chance to adjust itself back down yet. That is when I started investigating all of this stuff. It really worries me, because when I was a kid they caught my BP really high, but then when they checked it a few more times it was normal. I think they caught it back then before it had a chance to normalize after sitting down too fast. Doc commented that kids do not have high BP because we have clear arteries. Maybe I had this stuff going on for years. Crazy.
  23. It's just weird how the last two Monday's I was barely able to complete my work. Last Monday I only made it though my shift because someone illegally dumped in the outside dumpster and I could not empty the trash cans. That saved me 30 minutes of heavy lifting which allowed me to complete my work. Last night I felt better and was able to mop the warehouse area two times in order to make up for skipping it for two weeks in a row. Next week, if I am not feeling well, I can skip it again and then make up for it the following week. I will continue to skip certain tasks until the customer complains. Then I will have to decide if I can handle the work or whether or not I need to move on. As for now, the customers are pretty happy and not so picky, so all is good thus far.
  24. Pistol, you give some great advice. I know at times I should not be driving. The only reason why I continue to drive is because driving is what I do. I have over 2 million miles under my belt from truck driving. Even on a bad day I am still a better driver than most, but a lot of that has to do with dumb luck. If things get bad I will have to opt for an easier job again. I had a job dispatching 50 trucks from home in 2015, but my friends company went under and I lost my job. That was a good for of work because I would just wake up and be right at work. I used to run my own trucking/expedite company in 2011 and 2012 before I got sick. I know trucking from the drivers seat all the way up to being a CEO. I would just start another company right now if I was healthy. I simply can't go back to working 18 hour days. When you own a trucking company, the phone never stops ringing. Even on the weekends, the phone needs to be answered and customers and drivers need to be updated with new delivery times and position updates. There is never any off time and unless you have a huge staff to help you out, or a few good business partners, you will never get any sleep. This is not good for chronically ill peeps. Oh, I know better not to fight. If I would have not taken my breaks on the weekend, I would have probably collapsed right there on the floor. I did better yesterday though. Weird how one can be on survival mode for two days and then have a semi-decent day. I'm paying for it though today. I did extra cleaning that needed to be caught up on from shaming it for the last two weeks and every muscle in my body hurts. I slept 10 hours after work, got up for 6 hours, then went back to bed for 6 more hours and I will be going back to bed again real soon. At least I emptied out my bowels two good times earlier today so I was able to eat a good meal. Any how, I'm trying to hold onto this cleaning job for another year then I will be ahead financially.
  25. My BP goes to 170/120, 180/130 without meds. That is standing. But 116/76 when sitting. It just zaps up and back down like a car accelerating lol. Now with meds it is pretty evened out until the end of the day when it will spike to 130/98 when standing. Crazy how this all works. This is what was happening to me for years and to the point where I could not even stand in line to renew my drivers license. I finally had an ER doc witness what happened and he was tripped out. I had a BP of 170/120 standing and then 116/76 while laying in the hospital bed for 3 hours. Then when I stood back up, BP went back high. He didn't know what to do with me. He said to get a job where I do not stand up lol.
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