Becia

Sadly could only stomach about a 1/4 cup of miso broth, and a couple bites of my sushi my swallowing is all messed up lately, along with my stomach. Didn't know that could be relate to the EDS, found that out today. Quite interesting. I'm really getting tired of that. And yep, thinking you have this, and sometimes feeling bad you're mentioning it to a doctor that it could be, because then they think you're nuts, is really hard, and I kept thinking I would feel better knowing for certain and having a doctor say yes this is it. I burst into tears. I cried all the way home, on the phone, in my place in solitary, and even now. I've just resorted to taking a Xanax per my doctor to get myself to calm down, because my heart rate is over 160, and I am so exhausted and done, but can't shut down. Hoping tonight some rest and reboot tomorrow. Also running my IV, sometimes that brings my heart rate down a bit too.

I'm currently waiting on a hearing with the judge, my first and second times both denied. Ohio apparently has been mean lately according to my lawyer, but I'm try to be be patient. Certainly not easy, and I'm honestly thinking of giving up too, but the state of Ohio found me disabled, and I currently get the state disability assistance payment of $115 a month. Not easy to pay bills and live on that, but I'm trying, and trying to keep the faith. We are currently over a year out from meeting with the judge, and seemingly in the meantime, I'm just gathering more information for them to present to the judge, because while I've had doctors try and heal me, nothing is changing the fact that I sit up for more than a few hours with my feet down, I'm sicker than a dog. Nothing is changing the fact I operate better on doing ivs every other day, cannot stand for more than a few minutes, and my mind is taking a big pummeling mentally. I don't have advice, but just wanna say I know how it feels. Try to keep keep the faith.

So today I had my genetics consultation, and ended up walking out with a diagnosis of Ehlers Danlos confirmed. No blood work needed, but according to the doctor I saw, he was surprised I hadn't complained more of issues before. I'd always been flexible, dealt with a lot of pain, and just thought I was slow to heal with wounds and clumsy. Thought it was all normal for me... Apparently not! He mentioned some of my GI issues could be related to this as well, so we are investigating that in the near future, as well as why my blood pools because everything in my body is so loose. He concured with my doctors that using assistive aids to minimize the wear and tear on joints and such, as well as going ahead and having a bone density test. It's a lot to take in, although I had suspected it, I guess hearing it made it real to me. Getting answers one doctor at a time. Taking my days one day at a time. Sometimes I feel good, sometimes I feel pretty rotten, but I'm trying to manage. I'm having oral surgery next month, in which they are admitting me to the hospital where my EP doctor is in case of emergency, and to help me recover from the anesthesia, since I haven't reacted well to that in the past. I'm also meeting with a gi doctor up here, and can take the EDS diagnosis with my POTS to see how we manage these issues. Just thought I'd share. While I was relieved to finally be able to name this part, part of me was crushed. Maybe I just need some time. And according to a great friend of mine, some sushi and miso soup (in which she is bringing to me to tonight, because i am so tired, I cannot sit up without falling over). Total sodium loaded and deliciousness... Some crave pasta when sad, I crave raw fish and tofu

Online shopping, making all my gifts (which is what I did this year due to physical issues, and money issues), and using assistance. I'm no longer too prideful to go "dude, please push me, or I'm leaving". When at Walmart, I'm fortunate I used to work at the one I primarily shop at, and if I'm overwhelmed, I can escape to the back room with a friend to relax for a minute. I usually go find the yarn aisle, as it's darker, and not many people go down that, so I can kinda catch myself, and find yarn (I'm a crocheter/knitter to the max, so yarn is like a drug to me, lol). Trying to stay hydrated, keep salt and snacks with me, and if I need to stay in a car for a break, I do that as well.

Bipolar has already been ruled out. My last experience with Paxil I was constantly told it just wasn't in my system enough, to up the dose and keep trying, which led to me being hospitalized for four days. I had tapered up on it as well, and still ended up having major issues. when I was in celexa, my roommates at the time couldn't keep me concious. The SSRIs were horrible with me, and certainly didn't help my mental mind set either. I'm worried, like anytime a new medication is added, about how is this going to affect me. Last thing I want is another bizarre hospital stay because my body doesn't handle this right. In the end, the doctor may decide to not even medicate, but if there is a chance of it, I'm trying to research what I can for them and for my peace of mind. My doctors are also sending her my history, so she can see what I've been on in the past, and what I'm on now, and dealing with my condition, so we can make the wisest decision as possible. Thanks yall for the information

I know some of us have had the luck of anti depressants helping our symptoms, namely SSRIs that I can recall. I was tried on celexa and Paxil, which made me much worse, and certainly didn't help my mind while I was on either one. Im looking at going back on antidepressants to help with my depression (diagnosed because I'm dealing with a chronic condition hat has greatly affected my life, per the psychologist), but I'm extremely hesitant to go back to SSRIs, and I'm not sure what else is out there that might actually help my symptoms as well as my mind. Last time I was on Paxil, I was hospitalized in a serotonin crisis, and the SSRIs made me sicker with my symptoms. Thoughts? Ideas?

Honestly only bought it because it's pink, lol. Pink is my favorite color, and I joked that if I was gonna have to ruin all my food with salt, at least it could be pretty. I love mine on some steamed edamame. In fact, now I'm craving some....

Laying down:88. Sitting with feet down:122. Standing to transfer to my other wheelchair:156 and quickly going up. The more triggered I am, by noises, physical exhaustion, or have sat up too long, the higher it likes to go. Like Friday, I had a doctors appointment a couple hours away, and travel is always hard on me because of the feet down for too long issues, so by the time I got back from that appointment, my heart rate was 173 sitting up with feet down, and laying down it was still 130s. It stayed high for the most part Saturday because I was out with friends trying to run errands, ate a large lunch (well, large for me, I was sick as a dog throwing up because I only used one of my stomach medications, instead of all three, but the other two make me a zombie), and I needed to be flat more, instead of upright. As for salt, I try to add what I can to food, drink Gatorade (or pedialyte), whatever my body can tolerate. I've been having major stomach issues, so I'm not sure except on IV fluid days how much I'm really getting in me. We sadly discovered early on that too much salt in my stomach make the stomach issues worse, so I do what I can.

That should ready NOT going to be ao strong... Lovely small keyboard and tremors, can't type straight, lol.

I'm going to OSU for my dental work, because my EP cardio dude is right across in a building, and the ER was on the other side. I am the worlds worst patient when it comes to dental things, so I'm still terrified, but ready to get it over with, and hoping that since we are doing it in such a controlled environment that maybe the issues are going to be so strong. Being admitted isn't a bad thing, because if I am so triggered and flaring, I'm can stay and get it under control, and if they are tolerable, I can still get home. I can see being Leary of going back Yola, I would be too. I feel that way when the doc mentions another ablation.

I tried to sign up for this, but when I went to download it, was told access forbidden.

Mine increase when I talk, and we discovered in physical therapy, when I raise an arm or a leg, it increases until that is back down.

I've had two ablations, in which I got told that it's possible that caused my POTS tachycardia, but my heart was beating so out of rythmn (no tachycardia though) that I needed the ablation to correct the rythmn. My current EP doctor has also mentioned maybe doing a pacemaker with me, but it's a new model that senses your breathing, and then brings your heart rate down to match it. I don't have any anxiety or hyperventilating when my tachycardia takes off, so that would be a nice thing, as all the meds I'm on to make my tachycardia livable to deal with, I've had horrible side effects from, and had to stop taking them. It's one of those solutions that we don't know if it will work for me, but it's indeed something I hadn't heard in the last year, so something maybe worth entertaining. With the heart issues that running in my family, heart failure is def something I'm worried about. They never said my Mom had POtS, but they were treating her like she did at the end of her life, and she also was in heart failure.

Guten tag to you as well! I'm actually trying to learn German because I'm bored, and have a friend who is fluent. He one time answered the phone by speaking German, and totally freaked my home health nurse out. Don't have much to add here, other than stay strong like said before. I'm jealous of the ability to stand for 15 minutes, I sadly have about 2 minutes before my body goes haywire enough and I pass out .

Lol, the dentist was afraid to tilt me back too much, as he was afraid if I ended up getting up too fast, we were gonna have more problems than I already was having. All I can say with my dental work is better living through chemistry, bring on the drugs, lol. If anything will get me to sleep, I'm all for it, as I haven't slept in a while.

As for the gastric issues being related to my teeth, I do have to wonder. I've always had a "funny" stomach according to my family, but the past two-three weeks have been the worst. When you're throwing up bland foods even, something is wrong. I've also had an increase in my stomach pain ever since I started the mestinon, so I still think some of this is related to that, and I'm at the point I've asked to stop taking that medication because of the side effects. I had them all under control before we added that, and it's set my body into over drive. The dental surgeon is looking to expedite my procedure there, so I'm hoping I have it done asap. I have it sign some different papers for the office and send back for my insurance to cover this, so I know I won't know for about a week or so when the date is, but I know he wants before the end if the year. If he gets his way, all I want for Christmas will be my two front teeth, lol! As for the other two tests, I have a feeling those will be easier to get my insurances prior authorization. I'm kinda in a first come, first serve mode right now. And while I'm used to pain, I'm not looking forward to being in pain, and I know both will have their thresholds pushed. Maybe not the emptying test as much as the endoscopy, and def the oral surgery, but my nerves and the little anxiety I do have are both up. I will be better once the big step is taken.

Vague enough? Lol. In the past month, I've had no less than 2 doctors appointments each week, this weeks had them both on the same day. Talk about exhausted! After putting it off for several months/years (kinda depends on how you look at it, I've had the insurance for months, but I haven't gone in years), I ended up in a dentist office. After one hurtful visit (where I was called an untouchable because of my condition), I was referred to another gentleman, who took one look at me and was right on board with what I needed done, and how best he could manage my care. While I'm facing major oral surgery for extractions due to the condition of my teeth (vomiting for years has taken its toll), homeboy is confident he can take care of me with the least amount of stress to my body as possible. I will be having all my work done in an OR setting, where they can monitor my heart, have an anesthesiologist watching everything, and I can get some extra fluids to take home with me (thank you PICC line!) to aid in my recovery. After my GP appointment today, he is setting me up for some gastric tests to figure out what all is causing this current outbreak of major vomiting/nausea. Upper endoscopy and a gastric emptying test are on the menu in the next couple weeks, as well as my oral surgery. I was a little disappointed that we didn't reduce my fluids schedule, but given how the next month or so seem to be playing out, I have a feeling I will be grateful for the extra boost I get from them, especially with all the vomiting. From the ER doc and my gp, they have been the reason I haven't been hospitalized yet. If it rains, it pours here. I do wish something could be simple with me, because I'm really tired of being the "special" one, but alas... I guess someone's gotta do it, and that someone is me. Any tips, hints, suggestions I have in all these tests, I welcome them all. I'm extremely nervous about the sedation stuff given how it could impact me and make me even more ill, but I'm also looking forward to not having all these massive infections, exposed roots, cracked teeth (from seizures), and honestly, a nice smile again. I haven't had a nice smile in years.

Will look into that one as well, thanks Katie I'm really hoping this calms down by next week, because I really want to be able to enjoy Thanksgiving dinner without too many issues.

When my vertigo first kicked in I used the transfer patch, it it kinda helped, but my doc will not prescribe that for some reason unknown to me. Will ask about it again though. I drink ginger ale and tea, will look for some ginger chews to see if they help too. I can't stomach raw fresh ginger, it bothers my mouth too much, even though I love the smell and taste of it in food.

Yes, allergic to that and compazine.

Currently battling a UTI that has me extremely sick at the moment, and need some advice... For nausea/vomiting control, I typically use phenergen tablet and Zofran tablets, more Zofran than phenergen. In hospital, I take Zofran IV because needing the extra injection for the phenergen, triggers me because I'm sensitive to touch, and I end up sicker from it, so it's a very rarely used way for me. My home health nurse is trying to get IV Zofran for home use for me, since this infection has left me with some quite severe and uncontrolled vomiting. I'm still trying to take my meds, but today's check up kinda made me and the nurse think the medicines are not staying in the body long enough before vomiting sick up. I do IV fluids at home every other day, and I'm hydrated, but not getting any food and nutrients in me, and that can take a toll as well. My doctor is refusing to administer the IV Zofran at home, and called in more phenergen. I'm allergic to compazine and raglan for my stomach, allergic to the Zofran that dissolves under the tongue, and the rectal phenergen doesn't work at all with me (also doesn't stay with me, as the antibiotic and the mestinon have given me "wonderful diarrhea")... What else is out there? In addition to the meds, I'm trying to sip ginger ale, peppermint tea, using peppermint essential oil in my water... I am out of ginger tea or I'd drink that too. What else is out there for this? I'm thinking once the infection subsides, this will too, but in the meantime, I'm going on two weeks of not keeping foods down, throwing up even the blandest diet. There's not much left in there, and I think my stomach and body would appreciate a little more, lol. Thanks in advance.

I haven't ever had burning with uti's. It hurt up under my ribs, and I still am vomiting like a mad woman. Hoping I'm keeping at least some of my meds down and hoping I feel better before my dentist appt on Thursday.

lol, I was coming home from an ER visit this morning at 2am, and as my friend was wheeling me to the car, it was snowing. Didn't stick, very cold outside, but yep, it's here to stay I fear. Everyone who's come to see me has been bundled up, and I've been perched on the couch with my blankets. This Texas girl is not a fan of the Ohio weather, no matter how pretty I find the snow. Love looking at it, but the cold bothers my joints, the pressure changes (in any season really) mess with my headaches, and my skin is much more sensitive to the touch in the cold.

Just got out of the ER a few hours ago, where they told me I had a uti and a kidney infection, and the only symptom I had was this insane vomiting I've had for a week. No typical uti stuff, and I'm on midodrine as well. Apparently have had it for some time as well. Only saving grace is the fact I do IV fluids at home and I was managing my hydration half decently, but couldn't stop throwing up, and my Bp and hr the last couple days were insanely out of control. Never hears of midodrine masking urinary symotoms, but am looking more into this now.

No stomach protector being offered, but I've tried acidophilus and eating yogurt at home, which is what I do when have to take antibiotics and such because they tear my stomach up. And yeah, the tremors and twitching are insane. At first I thought it was just eyelid twitching, but I held my eyes closed one time,and could feel my eyes moving under my lids because everything Was having a heyday. The vomiting was bad enough today that I nearly threw up on my therapists shoes today.... I was trying to hold it together for our session, since we were talking about how to approach asking to come off this med, and weighing pros and cons. He looked up at me and was like "we are cutting today short, and I'm escorting you downstairs". I made it as far as out the office door and down the hallway partially before swerving to rush into the bathroom. Never throw up red Gatorade (my favorite flavor is fruit punch and berry, which is all I have right now), because it can scare ya pretty good, lol. time to switch to lemon lime for a bit, lol.