Becia

Thanks Kim for the idea of tracking for the review! I hate not knowing, so I'm already nervous about that and it hasn't even occurred yet. I'll start a new tracker on my computer for this. and thank you everyone for your kind words. I've had a few days to destress about it (and replaced that stress with fighting with a doctor apparently) and am beginning to feel a bit better about it. Still a bit of a mixed bag, but getting better.

Sometimes the thing you want to hear, is the hardest to process once it's out in the open. Seeing something in black and white, in your hand, can lead to a mixture of emotions. Do I feel jubilee? Or is this disparity? My disability was approved. Not just approved, but FULLY approved (or "fully favorable" in SSA-ese) back to July 22nd, 2013. It's got some crazy talk in the decision process making that has me extremely freaked out, but I'm trying to not focus on that. Just like when I finally received a name to everything I experience, the POTS and the Ehlers Danlos... It's officially a mixed bag of tears and now intense pain from everything of today, tears of relief and tears of uncertainty. I'm currently on my third nursing home/in patient intense rehab stay. I opted to go back to the same place I was in last time, since I had a great experience there with people being willing to learn about my conditions and how better to care for me when things get insane.. While I wished I could stay in home, I know I couldn't secure the needed help to make being there when I'm having an intense crash, a safe experience. Plus, the physical therapy group is outstanding, helping me secure braces for my joints, allowing me to customize my time to focus on things I would be doing at home (such as cooking, cleaning, etc), to figure out how to change how I do pertinent activities for living. Out of all of us in the "Fast Track Rehab" wing, I know I have a harder time of securing help at home compared to the rest of the clientele, usually jsut based on my age alone (I'm the "baby" here at 34). I honestly have spent so many days and sleepless nights, so many doctors appointments, therapy sessions going "what happens to me if I'm denied again?" I was trying to figure out how could I work, even though while going through the hearing and hearing the hypothetical situations the judge and the job expert went over, said that I wouldn't be able to. What has me a bit concerned is one single sentence that says that improvement is expected with appropriate treatment, and to review in 24 months. According to my doctors, I'm at it, and I'm still having many issues. But I guess figure that out when it comes to it. its just been one wild time.

I've been fighting some major insomnia for a couple weeks, getting to the point of "I know there's nothing on the walls, but I'm seeing something." I've been changing everything that I can think of. One thing I've started using is my iPad, and a white noise/sleep sounds app that I downloaded. I've always liked the sound of rain and storms, so when it is time to go to bed, I start it up, and put it right by my pillow. I can set it for hours or minutes. Usually about 15 minutes I can start relaxing, and while I may not go completely asleep, I do feel a bit relaxed. I also have started using an electric throw blanket on my bed, and have it going. I have EDS, and my legs are some of the most painful things I deal with. The warmth of the blanket, topped with a heavier blanket, help me relax too. I'm looking at purchasing a weighted blanket to help this as well. It's like a big hug, and relaxes me.

You know you have POTS when... at the amusement park, you're don't have to ride the rides for that adrenaline rush, you just have someone push you real fast in your wheelchair. Your idea of a good night is simply a good comfy pair of pjs and a movie in bed, followed by 8-9 hours uninterrupted sleep. When you refer to your IV saline as your best friend. When you name your aides to daily living, such as Portia the Port (my medi port), Pip the Pump (my IV pump for the saline I get every other day), etc. I'm sure I have a few more, but brain fog and the fact I've had three hours of sleep since Wednesday is kicking in.

When I was diagnosed with POTS, and then later with EDS, a friend popped her head into the media booth I was hiding in at church (because I couldn't tolerate the sound and lights of the youth room during Sunday school), and said "you have a name for everything that's coming against you. No longer can doctors sit back and tell you you're crazy, nor can you sit back and wonder if your mind is truly the reason for all of this... It has a name, and that makes it real. Now that you have a name for it, and your doctors have named it, now we can go about trying to figure out how to live with it." Having my EDS confirmed, totally made everything I ever felt and experienced, valid. No longer can people tell me it's impossible to live at a pain level of 8 all the time, because with EDS, we experience pain in a way non-eDSers do. Everything my mom used to tell me that was normal, well to her they were. She too experienced everything I'm enduring, Having my POTS diagnosed within 10 seconds of starting my TTT, confirmed that what my body is doing, is real. And right now it's guiding my doctors in learning to deal with me, as I've been one of the more interesting cases for my doctors. This board rocks. I need to pop in more often, but they are great here.

I echo Sarah's comments of using the BP as a tournequet and using heat to help the vessels. Being a former phlebotomist/lab tech, for people who were difficult sticks, we used many warm towels, heating packs and sometimes even a little light massage to help the veins relax and come near the surface. Only bad thing about doing this sometimes before a blood draw is it could sometimes lead to changing the results, as manipulation could lead to hemolysis (breaking down of red blood cells).

A belated merry Christmas to everyone from my little corner of the world...which currently consists of the couch and many pillows, lol. I chuckle at the "having pots has taught me how to cope with feeling bad" because it's so true. After all my body throws at me, there is truly not much that sways me. as mom once said, "ain't no thing but a chicken wing". I do hope all are having a easy day after all the festivities. I was only out of the house for four hours yesterday, and feel like the truck just ran me over a few times. Between POTS and EDS issues with me, it doesn't matter how short a time I was up, I'm still gonna be downed later. Might as well kick back and enjoy it, so I've popped on some Downton Abbey I checked out from the library, found a piece of pie brought home last night, and enjoying a mug of cocoa.

I know with me having EDS, my veins are fragile and can easily blow. I've only got a few decent ones keft for IVs if needed. I had PICC lines for over a year since I do IV saline infusions at home, but the doctor finally placed a port in my chest for access.

For over a year, I've been in IV fluids every other day. I'm fortunate that I never had any infections with my PICC lines (have had one in each arm, I now have a medi port placed and accessed ), and my doctor has been very supportive in using this as a therapy for me. I am also on a 0.1 dose twice a day of Florinef with this. the biggest drawback for me, is I benefit from the runtime being slow, such as over 8hours. I get ivs in the ER, run at their fast "get her out" rate, and within 15 minutes, it's flat out all in my kidneys. Slower run time, I can benefit from the dose of sodium it gives me, since I cannot take salt in my stomach (lovely EDS affects my gi system too), and if I try to drink my daily intake of fluids, which is 3-5 liters, I cannot eat either. IV days I get a little bit of a break, I can focus on solids and swallowing. I also get 9,000mgs of sodium in one run, I'm all for that. With the slow runtime, I am currently not able to leave my place,nor really do much, since I'm dragging a IV pole around and I'm already in a wheelchair. I've talked with my pharmacy today, and we are pushing for doctors approval for a Curlin pump, which will let me place my liter in a backpack with an electronic pump, free up my hands for other works. Without my fluids, I'm useless. I wish I was able to run a liter everyday even, especially in my worse flare ups. But I've inly been in the hospital for my POTS twice since I began this at home, compared to the every other week ER and 12 other hospital stays. I think that is success.

Effexor was a bad drug for me. I was on it for 2-1/2 weeks, and it set me into a pots crisis that a hospital stay and then a nursing home stay for a couple months to get my energy back, was needed. I was nauseated, throwing up, having horrible thoughts, lightheaded, dizzy even worse than normal, and I couldn't function. I've never been prescribed clonazapam, but I have heard from others sometimes doctors don't like prescribing it. I do hope you find something that works.

For over a year, I've been on IV saline, one liter every other day, for my POTS. My gp was actually beneficial in getting this therapy for me, and it literally has been a life saver. I was being hospitalized for my POTS every few weeks it seems, but in the past year, I've only been in the hospital three times for it. I just recently had a port placed in my chest for my access, as my veins were not that great for the PICCs anymore, and hen I was hospitalized a few weeks ago, they determined the last one needed replacement. Due to how I was there, they did some research, realized I've had two before this one, and the saline was a long term solution for me, so port was my next option. I'm glad I did it, even though right now, it's very painful. I've had cardiologists and neurologists both say I needed the saline, but my gp was the one who did it. I cannot orally take in all we need in fluids and salt (gastroporesis, difficulty swallowing), so it made sense to get the saline and some fluids this way, to my doctor. My current solution is regular 0.9% sodium chloride, but I have also used ringers lactate solution and had amazing results. The "bad" part of it, and for me, it's not really bad, is I seem to get the maximum results from the saline, if I run it slow. That way my body seems to absorb the salt and the fluids and I'm able to hold on to it longer. So I run mine over 8 hours during the day (I'm usually too symptomatic to safely set everything up to run at night, plus, if I sleep, I move and end up pinching the line), which means I'm stuck at home, but hey, that's fine.

I was told the compression starts at the ankle in stockings, so I can't see whether open or closed toe would make a difference. I just purchased thigh high stockings after a couple years of knee high (the doctor wanted me in waist high, we compromised with thighs)... And I cannot get them on, lol. i ended up dislocating a hip in the middle of trying (I'm also EDS), and kinda had to lay there like a turtle on its back for a bit. It was actually funny, but man... Gonna have to work on this a bit, lol.

I just became an "as needed" user of this, after being on it everyday for two years. i can use 30mg a day, split over three doses, if needed. We set parameters with my BP, using it if it drops 135/85 or below (because once the moment I sit up, or have my feet down for an extended time, my BP starts dropping). I also am hyper-POTS, so I have a tendency to have it run higher, and for awhile they were using it everyday with me to help keep the blood pushing towards my brain (since it works as a constrictor for my vessels in my extremities). So far, since we've starte this protocol, I've used at least one dose a day, usually in the am, and sometimes a noon dose as well.

I'm Hyper-POTS, and tried Effexor at 75mg once a day for three weeks. I ended up in the hospital, and then a nursing facility for two months after. That medication totally messed me up and fried me. I was doing a trial run of it to see if it would help with my EDS pain, and my depression. It literally did the opposite for me (increased pain, increased depression to a very dangerous level) as well as nearly fried my autonomic system. I wasn't maintaining anything, my body was in overdrive so much that I had one of the worst flare ups ever. I had a similar reaction to Paxil and Celexa two years ago, but not to this extreme. it doesn't like me one bit.

"Let's just make your midodrine as needed". It was music to my ears, because the last doctor I talked about reducing the midodrine because it seems like sometimes it's hurting something else, promptly told me I was crazy, and how dare I ever think I will be with this medication for the rest of my life. I'm in the midst of another long term in patient stay at a physical therapy center, trying to regain my energy and trying some new stuff, after about two months of not being able to safely function at home on my own. One thing led to another, and bam. Also just had some more oral surgery, so I've been kicked enough, and I'm still kicking back, but having to be kind to my body, and allow people to help me. This stay is so different than my last one (different facility for one, different therapists, and a new diagnosis of my EDS), and the results are amazing really. Anyways, today I had to meet up with my local cardiologist (I have two, local dude and then an EP specialist at Ohio State, about two hours away) to go over my midodrine, florinef and little things he's watching here. He's still a bit frustrated I do not have a pacemaker yet, he thinks I'm a prime candidate for a certain one, but it's all on the EP doctor. With having the PICC line in place, I can not have the pacer placed, because of risk of infection, and my saline infusions have been really beneficial for me, so I'm hesitant in getting rid of that, or I will be dealing with a lot more er and hospital stays if I remain hypovolemic. While I've been in the rehab, my doctor here is the same from my previous stay, and we were looking through my records, and watching my BP. I am hyper-pots for the most part, do have a few hypo drop outs as well (and when they happen, they are gnarly bad). For me, the midodrine helps raise that when it drops, but it also is helping the veins in my legs constrict more, so the blood is pushed more to my brain. So, if I'm going to be going out, spending anytime with my feet down, possibly standing/walking (I also am Ehlers Danlos, type hyper mobility, and my extremities are extremely fragile and lose, so I use a wheelchair, but can on occasion make a short 10 foot walk if need be, with my walker, etc), I like to take a dose and keep it in my system to help minimize my syncope (which even when it's there in me, I still pass out, but it's not nearly as often as without). Well, the last few days, my body has really thrown itself into a hyper crisis (178/145 last reading, heart rate 144) and my doctor here changed how we did the midodrine, by using parameters. If it's below 135/85, we take a dose, which has been in the morning for certain. If above, we stop, because even though it will start to dip some with going to therapy class with my feet down, I'm moving more, I've got compression wear in action, and I'm also wearing some pretty strong braces on my legs, and that helps further the flow back up. Again, midodrine has never taken my pre syncope away, and while I'm sometimes nervous about not taking it, and then going to therapy, I have a dose right down the hall, the therapists all work with me and we monitor all that's going on. The brand I'm on seems to kick in within about 20 minutes, which is perfect because depending on what I did, I need to rest, and that's perfect. I'm really excited my cardiologist agrees with this action, and is wanting me to continue it when I get home. I monitor at home like mad anyways, and with my EDS issues sometimes, I need to lay down and get off my hips. Can't do that with a dose of mido in me...and now I don't feel bad needing to skip a dose, if it helps something else. I suspect i will still be taking at least two of the 10mg doses a day. I asked if he ever foresaw me coming off of the florinef or the midodrine, and he honestly does. He's also going to push my EP cardio to try me on the Ivabradine too, if we decide I do not qualify for the special pacer he knew of (monitors breathing, and then lowers heart rate to match that). i honestly don't see how sometimes, but it is nice that he has that hope, and trusts me enough to do the midodrine as needed, so my body isn't throwing itself into an overdrive all the time. Even if it's still twice a day I need it, one less pill to choke on is one less pill. Not much to really report on my case, I've kinda just thrown myself more into the "this is how I have to deal, these are my diagnosis, what can I do to manage my life" More than research. I get confused and stressed more with research. I just did my first new medication trial in a year (sadly, it failed and made a few things worse), so I'm definitely back to no more. I may try the Ivabradine, because I'm hearing great things from some on it, but so far, my doctors are leery. I'm learning so many of my other issue are tied back to my EDS, learning my mom may have had it, and it's shaping everything, from my cardiac care, my neurology, physical being... It's amazing how it's tying and making sense. But now, I gotta live. Hope to be home in a week or two. They are securing someone to come in and help me with chores, shopping, etc., so that is a welcome addition to my life. Lots of education on POTS and EDS happening with my nurses and therapists, but I think it's gonna benefit the future. While I wish I was home, I miss my fish, I'm content with being at the rehab facility, because for the first time in a long time, I feel like I'm getting a bit healthier than I have been, and I have the safety precautions I need.