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blizzard2014

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About blizzard2014

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  1. blizzard2014

    How is everyone.

    I tried grass fed beef the other day and it was yucky. But then I added a gang of spices to it and it was alright.
  2. blizzard2014

    How is everyone.

    I was forced to do it because of diabetes. I used to eat all day long. Now I have to control the disease. I long for the days of just wolfing down a dozen donuts and a few glasses of milk. But that party has come to an end lol. If I continue to eat like that, I'll be gone in 20 years from kidney disease or heart attack. But with todays science and Splenda and almond flour, you don't have to feel as deprived. It really helps. I'd go crazy without splenda.
  3. Even after not even taking my full dose of Lisinopril yesterday and my BP still staying at 133/103 standing and 120/90 sitting, it dropped low at 3 AM. It went down to 100/77 and stayed there until I went to bed and stopped checking it. My HR was high, 85 BPM though. I tried to get another standing reading, but kept getting error code after error code. I could not get the BP to register even after moving the cuff around to different positions. This kind of freaked me out as what if my BP starts to drop really low when I am on meds. Maybe I should not try and get it too low and give it a wider range in case it drops too much. I read that folks with true hypertension will never see numbers that low, even when on three different BP medications. Crazy stuff. I do notice that with the lower BP my severe anxiety got better.
  4. blizzard2014

    How is everyone.

    Why not drink diet soda. I use Splenda in all of my drinks and I can even make a chocolate cake with almond flour, Splenda, and cocoa and it is only 7 grams of carbs for a pretty big piece of cake. You can also make bread with almond flour and eggs and it is like 7 grams of carbs per slice. I like the low carb diet more than keto, because you can still have 40-60 grams of carbs a day on maintenance and stay skinny. You don't need to restrict carbs to under 20 a day. That's just way too restrictive for me.
  5. blizzard2014

    How is everyone.

    I spend between 30 minutes to 1 and a half hour a day in the bathroom every day. Been that way for years so it is a daily routine for me lol. Even locked up I was in the bathroom a lot as it came out one small piece at a time. I have never had normal bowels. The Keto diet is good supposed to really help a lot of medical conditions. But they say we also need to cut out dairy too. I will be trying a diet next. I'm glad you're feeling better.
  6. blizzard2014

    How is everyone.

    I've been kind of absent for a while due to being depressed, but the dysautonomia mystery continues. 1 small piece of Lisinopril added to a half of a 20 MG pill is the difference between 130/103 BP when standing and 118/80 when sitting, and 120/85 standing and 96/100 over 71 when sitting. It's literally driving me mad today. The other day I had 6 straight readings of 140/102, 133/101, 133/101, etc. Then after driving for 30 minutes to work, BP reading before getting out of the car was 118/80, two times. Then after 2 hours of light cleaning of a building, standing BP before sitting back down was 130/101. Pulse was 110 after working. But now my pulse will stay level from the sitting to the standing position and the BP will still be acting all crazy. But what really has be depressed is that I feel the same dizziness, lightheadedness, brain fog, and absolutely unwell whether my BP is normal, low in the 90's, or even high in the 145/106 which was the highest reading when on meds. It makes no difference in how I feel or the tingling in arms, headaches, and it feels like that dizziness you get after holding your breath for too long. I have never passed out, but it feels like I am in a ready to pass out like state. I decided not to adjust my meds today since I will be sitting in a chair all day any how. No need to stop the spikes. Now, I know they say you cannot die from this condition, but it surly has to be doing some sort of damage much like drag racing in a car. Going from zero to 120 in seconds, then back down again. A doctor told me that I can get a popped vein in the brain from too high a reading and then bleed to death from the blood thinners. Maybe his is mistaken. Just wanted to see how the rest of you are doing? I also have been having 5 days feeling like there is a hole burning inside my stomach and very intense anxiety. But I am no longer ever backed up. I guess it is true that once they take out your gallbladder, you will never be locked up again. I go 4 times a day. Maybe a sluggish gallbladder was causing the gastro symptoms. I still burp up 14 hour old food taste though, so maybe I still have a slow gut. But my bowels are over-activated since GB surgery and I welcome this. I rather have loose bowels than be locked up and nauseas all of the time. Any how, I'm still plugging along living in my world of weird symptoms. I hope the rest of you are doing well.
  7. blizzard2014

    Fat shaming & Edema

    I had a doctor tell me my Post Thrombotic Syndrome and right sided leg pain is because I'm overweight. I have already lost 40 pounds in 2 years and the pain is still there. Some doctor's just don't like to listen or hear patients complain about their symptoms so they shut us up with whatever they can. Being fat gives them an easy target to blame for our symptoms without actually having to do the work of looking for the real problem. If echo shows heart issues, I would tend to believe the objective medical testing over a subjective doctor's opinion. I also failed an echo with moderately enlarged right side heart and the doc tried to tell me this is normal for everyone who had a blood clot in their lungs. It isn't. I was very upset he didn't take it very seriously or answer my questions. I still have good heart pumping though, so he said to monitor the enlargement. If you have edema and a bad heart, it could be a sign of something that needs to be closely monitored. I notice that I have more edema in my stomach area than I have anywhere else on my body. I have remained the same weight for a few months, yet my pants are fitting way tighter than they used to. I have to use an extender on my button to be able to wear them. All this and I am the same weight, just have swelling or something in my abdominal area. I also eat 1 meal a day. That's it. No sugar drinks, no soft drinks, just coffee with Splenda. One meal a day most days well under 2000 calories and I am still 233 pounds. My weight is too stubborn to budge. I only lose weight whenever I become physically i'll or go through a bad psychological melt down. I had one 2 years ago when I lost 40 pounds in 3 months due to not eating because I was having a mental breakdown. I have been able to keep the weight off because I do not eat like I did when I was nearing 300 pounds. In my case, I actually used to eat like the people on my 600 pound life before I got too sick to eat. I made myself this big, but I only eat 1/3 of what I used to eat and I am still fat. Any how, I hope you're feeling better. I would have simply walked out of that appointment room. I don't put up with rude doctors anymore. I dropped the heart doc because he was so rude to me. All I wanted to know was how long can my heart remain moderately enlarged before I lose heart pumping function and go into congestive heart failure. A moderately enlarged right ventricle means that the right ventricle is so enlarged it is the same size and thickness as the left ventricle. This is one step from severely enlarged. It makes me feel like there is a ticking time bomb inside my chest.
  8. blizzard2014

    caregiver kicking me out

    There should be a system in this country that actually protects and helps people who are sick. But sadly the system is so messed up. I hope your son will change his mind and start being nicer to you. The worse case scenario is he can try and have you evicted and there are ways to fight that for at least a few months. I don't know how you will fight it alone being that someone will have to show up to court to contest the eviction. As long as you have mail coming to that address your son cannot have you kicked out unless you're being violent (he can have the cops remove you for the night) or he has to legally serve you with an eviction notice. You have to make sure you have mail coming to that address though. I can't even imagine having to go through all of these medical problems and then have no where to turn. I will keep you in my thoughts and prayers. Hopefully your son is just going through a rough patch and having a hard time accepting your current health state. Is there any way you can contact a social worker to come in and help you get some services? That is about all of the advice I can give you. Hang in there.
  9. blizzard2014

    Sleep Apnea diagnosis

    I have a ramp up feature that starts low and goes to full pressure in 45 minutes. The only problem is that even if I am exhausted to the point of drunkenness, as soon as the pressure setting goes high, it wires me up like I'm on crack. I can't sleep unless they give me meds and the sleeping meds only keep me asleep with the mask on for maybe 3 hours at best and then I wake up and take the thing off. I know I need to start using this, but as some have stated I had very bad follow up from doc's and also from the medical device company so I became extremely frustrated and dropped the sleep doctor. The doc said lowering the pressure would not work and he is right. I saw my titration study. All events continued until the pressure hit 21. Maybe the pressure was 24, I don't remember if it goes that high. They had to switch me to a BIPAP machine and higher pressure half way into the titration study. My throat has a lot of resistance.
  10. blizzard2014

    Just did a brain MRI tonight

    I had a brain MRI and everything was normal. I had mines because they're looking for a structural reason why my Bells Palsy keeps on coming back on the right side. It has damaged my face some and the next time it's going to leave me all messed up. I try not to think about that. I can deal with a lot of stuff, but having a half working face is going to send me straight over the edge. Then the Neurologist who was supposed to review the report quit the practice. I will eventually see another one because I want that surgery where they open up the small bone by the ear so when the nerve swells, blood supply will no longer be choked off. Do you guys thing Chronic Epstein Barr can case this. I have read that Herpes virus can also cause this.
  11. blizzard2014

    Sleep Apnea diagnosis

    I also have moderate sleep apnea. I have 21 events per night and my oxygen levels are always under 88 when I sleep. I tried the machine and just put it under the bed. It's been there for 2 years now. Can you tell me how your friends heart size became smaller. I also have an enlarged heart and should be using the machine, but with 9 medications, insulin injections, and all kinds of other issues it would be for me like living inside a hospital 24/7. I have dreams where I'm choking and then just snap myself awake. I also have dreams where I'm not breathing and I can hear someone call my name and then it wakes me up. I think those are long apneas where I am choking in my sleep. I have some central apneas too. My blockages are severe a in I have to be on the highest pressure setting they have (and you can only get the hither pressure setting on a BIPAP machine) and it was set up to force me to breathe whenever my brain would not send a signal for me to breathe. I hate the d*** thing. But once the ticker starts to suffer from lack of oxygen for many years, then it becomes a serious problem. I would try and use the machine as it might make you feel better and help with your overall health. I can handle the lower pressures like 25-16, but when that thing hits 21, it's too much. It's like having a vacuum cleaner on my face.
  12. blizzard2014

    I'm new to the forum. I am scared

    He has an employer provided short term and long term disability plan from what I can gather. On those types of plans, a lot of them are occupation only plans. It means that if a doctor feels that you cannot return to your current occupation, you are awarded disability. It's not like trying to qualify for SSDI, which states that you have to be found unable to do any kind of work. If SSDI feels that you can no longer stand on your feet, but can sit down in an office and answer phones, you're not disabled. Even if you did not train for an office job, or have a degree. They will suggest you retrain and switch careers to accommodate your illness. It's much more complex and harder to qualify for SSDI than it is for long term disability insurance.
  13. blizzard2014

    I'm new to the forum. I am scared

    Everything changes with this disease. I was having HR go from 85 to 130 BPM all day a few days ago. Now it is going from 70 BPM to 100, to 110, depending on how long I stand up. BP standing without meds has been like 130/106. It goes higher without meds. I feel faint a lot, like I might pass out, but I never do. I have passed out a few times as a teenager, not blacked out, but knees buckled and hit the bed after trying to stand up on a very hot day. I don't know exactly what I have yet as I have not been tested, but I'm glad I have not been passed out on the floor yet. I hope you get to the bottom of what's going on. Also, I pray that you feel better soon. I know what it's like to be limited in activity, but only from my bum leg. My leg only has about 4 good hours of standing/walking a day and then it starts to drag like a sack full of dirt. I have bad circulation in my leg. I sit all day with my leg elevated on the recliner to prevent pain flares. It hurts like heck after sitting with it down on the floor for too long. But it also starts hurting from being elevated too long. Hang in there. You're surrounded by a good group of friends in here. They have helped me out a lot. I don't freak out thinking heart attack every time I have high HR. I had some really bad palpitations yesterday upon standing and the other night for a few minutes, like my heart was flapping around inside my chest like a fish out of water. But I know mostly it's just more of an annoyance than it is a serious medical issue.
  14. blizzard2014

    If only I was on the TTT today lol

    I'm going to try again, and if not then I will pay cash for a good doc to see me. There was only one good doc I saw in 2014 who advised me to keep my INR above a 3.0. An oncologist. But I don't think he knows anything about autonomic dysfunction so I won't be going back to him. He ordered a second blood clotting panel and my APS antibodies were still in the high positive level, even three years after my blood clots and first APS antibody test. The first one was 98 positive and the test he ran was 89 positive. Still high and still doing damage to my body.
  15. blizzard2014

    If only I was on the TTT today lol

    Pistol, my doc still thinks all I have is excitable "or liable" blood pressure. He gave me all of the BP meds and told me not to go overboard with them and kill myself. He's not so convinced I actually need all of the meds he is prescribing. He struggles to grasp my condition but pacifies me by giving me the meds. I'm currently looking for the best cardiologist in my area and gonna pay cash to see him and get some real answers. Blood clots can also cause dramatic increases in HR and it could also be that I'm still throwing clots while on blood thinners. It could also be that I have chronic blood clots in the lungs that keep getting missed on scans also contributing to all of this. For a while I just shut down because I was seeing doc after doc and getting the same answers. I stopped trying. But I will seek a good heart doc and then see the university of Irvine for some autonomic testing. I will begin calling this coming Monday and see if I can get some answers. You're right about keeping one dose of meds the same. I just panicked when my BP was 88/65, because I read hypo profusion to the kidney's can cause damage. Today I'm still hitting 111/100 standing even on the Lisinopril. If it continues, I will up the dose again. But what's scaring me is the consistently high sitting HR and I had a 30 second bout with heart palpitations yesterday night that scared me to death. My last EKG a few weeks ago said to consider left atrial enlargement, and numerous before them were positive for meeting the voltage diagnostic criteria for left ventricular enlargement. Left atrial enlargement is an early consequence of hypertensive heart disease. I also have the confirmed moderately enlarged right heart. One doc suspects it's due to pulmonary hypertension and that the day my pulmonary artery pressures were measured, I was having a good day and they do not accurately reflect my real numbers. Sometimes you can show normal numbers at rest, but they jump really high when you are walking around. So, a good heart doc is needed before the autonomic doc as this can all be heart related and not necessarily POTS. I just hate having to max out more of my credit cards looking for answers. I have almost 3 k in debt and out of that 3k, I only spent 300 on myself for clothes. The rest went for medical devices, medications, and medical related items.
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