Friday, December 06, 2013
I have an important decision I need to make, and it's weighing heavily on me. A few weeks ago I had testing done on my bladder. It was painful and sucked horribly. Yesterday I found out the results, and they're not good. The doctor believes the nerves to my bladder (and probably other organs as well) are not working properly. She doesn't really believe that EDS is anything more than a benign joint condition, so that means her opinion on the cause/effect of EDS on the problems with my organs (which she feels there is none due to her ignorance) isn't really applicable. However, I'm certain it's a large part of the problem. The typical causes (difficult childbirth, multiple childbirths, complications from previous abdominal surgery, serious physical trauma, etc) don't apply to me, so why else would I be dealing with nerve damage throughout so much of my body? My only thought is it's from damage & frequent dislocations of my SI joint, since the nerves run through there.
Anyways, she gave me 3 options:
1) do nothing and keep being cautious of my bladder (like I have been for years)
2) learn how to self-cath (oh hell no I can't trust my arms and legs to be able to position it well enough to not hurt myself)
3) have electrodes implanted along the nerves in my back to try to increase the nerve impulses leaving my spine and going to my organs (would also require implanting a battery pack into my hip)
I have to do some research on the implant. The doctor said they don't really know what it does and how it helps, which really doesn't make me feel confident about doing it. She doesn't think my EDS would be a factor in implanting it, since it's an in-office procedure (she so doesn't get the whole 'immune to anesthesia/painkillers' thing) without much cutting. Also, it's first tried in a 'temporary' way and if it works they make it more permanent, and both versions are reversible (except the whole EDS atrophic scaring/pseudo tumors thing). But this might not only help send some nerve signals to my bladder for the first time in a long time, it might also help increase the nerve signals in my colon and stomach too. So it's something I'm going to have to take time to consider. I won't do it until March at the earliest, if I do it at all.
What's bothering me is that they are screwing with nerves that are already damaged for an unknown reason. Nothing in my body is exactly 'normal' or 'standard', so it wouldn't be a stretch to be afraid that this could cause permanent and wide-spread damage, just as well as it could be an answer to several problems. I've lived with these issues for years (some at least since I was a teen, others for just a few years) and as long as I have a decent amount of control over my activities and surroundings I can live with them - as they are now. If permanent damage were to occur (total loss of nerve signals), the steps they would have to take to deal with the fallout (removing organs, using implants in place of or to stimulate organs, any type of abdominal surgery) could have serious consequences, even be fatal due to the complications of EDS. This makes my decision complicated, difficult, and important.
If anyone knows anything about the InterStim therapy or have tried it, I would appreciate some input. Just thinking about having to make this decision is causing some panic in me. Any advice/info would be appreciated.
I just called Dr Tinkle's office (a top EDS specialist) in case he or his staff can recommend anything I can persue before seeing him. She recommended further genetic testing for the mitochondrial disorder and she's going to speak to Dr Tinkle when he's back in the office on Monday to get his recommendations. She said they don't normally see people with EDS with nerve damage this extensive and when they have patients who have been dx with a mitochondrial disorder they often mistook the EDS symptoms for mitochondrial disorder symptoms, but with my history and family history it sounds more likely that it's a valid dx for me (hence getting further testing done for it).
At least she said that the few patients they've seen who get the InterStim haven't had severe complications and the one who had it removed didn't have major lasting effects. Still, I think more needs to be looked into about why the nerves aren't working before I make a decision about trying this.
Friday, November 15, 2013
I've had more hits since my last blog. Some "good" came from today, though it isn't good news, just validation of the serious symptoms that too many are denying I could be dealing with. I'll start with what's happened the past few weeks.
I had my hearing tested. My hearing is ridiculously incredible. The doctor told me that the normal threshold for people to hear any frequency is 30 db. Even my worst result (the highest frequencies) was at 25 db and some of them I could hear at almost 0 db! The woman running the test couldn't really believe it so she did each one a few times to make sure I was really hearing it. The only reason the higher frequencies were more difficult for me to hear was because they matched my tinnitus (ringing in the ears) so I wasn't certain if I was hearing the noise or the tinnitus until it was turned up a little louder. So now I have proof of my ability to hear things others can't, like vehicles outside, the neighbor vacuuming, etc. It is funny to hear doctors talking about you in the hallway though. hahaha
I got an SI brace (the sacro-iliac joint is where the spine meets the hips), but I still can't figure out how to place it so it says in place. It just keeps sliding up and doing no good. I have to play with it a lot more.
On Halloween or the day before I screwed up my shoulder pretty bad. It's been hurting since. For a few days I couldn't move it without enough pain to bring tears to my eyes, and I couldn't move it at all in a few directions. I finally started dislocating it on purpose a few times (and 1-2x every other day or so since) to try to get it to stop hurting, and it is the only thing keeping the pain at bay. Yes, I am pulling my shoulder out of the socket on purpose to stop the pain. I know this will make the joint even more unstable going forward, but I just don't have the energy to try to find a new orthopedist who isn't a complete moron. I have NEVER had pain from dislocating my shoulders, so to have this pain for such a long time and limited movement (well, limited for EDS) is concerning me. Nothing I can do about it though, so I'm ignoring it as much as possible. At least I know part of what's causing it is having to hold myself up with my walker whenever my legs give out, which stresses my wrists, elbows, and shoulders. So the less frequently I'm out of the house and having to use my walker, the better.
Last week, my ARMHS worker terminated my case and the next day I was told I don't even get to try EMDR. I lost 2 of the 3 mental health resources I was trying to use. They said my life is too unstable right now to be worthwhile. So until my physical health, housing situation, support services, and mental health are stabilized they will not work with me. This is a seriously horrible blow. They are literally taking away mental health support from a person who is at serious risk of a total mental health breakdown. This is why for so many years I refused to even look for help - mental health resources are not even close to adequate in this country.
On Monday I took gift cards I won from doing Viggle (which is totally imploding because the app is failing more than it's working and I can't wait until Vokl is released later this month so I can use that instead!) and bought some shapewear at JcPenney. There was a sale, I had a 25% off coupon, and I had $150 in gift cards. I ordered 2 more bodysuits (they didn't have them in stock, but they arrived today so I'll get them soon), bought 2 corsets (which is killing my ribs but helping my abdomen), and bought a pair of winter pjs. I still have some money left from the gift cards so I'm waiting for some shapewear shorts to go on sale, which should hopefully help support my SI joints and hips so they won't dislocate as easily
Yesterday I met with a urologist about what I suspect is multiple organ prolapse (due to the EDS). She didn't seem to believe me, though she was nice about it. Though the fellow working with her really bothered me when he said EDS is a "benign joint condition". I stopped him and corrected him and wouldn't let him claim otherwise! He apparently has a few hypermobile joints but no other problems, so he assumed it was the same for all of us (unless you have the vascular form that will kill you by middle age). So the doctor decided I should have a specific bladder test. They had a cancellation for today so I lucked out and didn't have to wait 2 months - and it was early enough that I could still make my appointment right after the test was done (which I've been waiting 5 months for so I couldn't miss for anything).
I'm going to talk about the test today in this paragraph. It might make you a little squeamish or might be TMI for you, so here's your warning. Skip to the next paragraph if you want. For the test they put you into a big chair with open space at the crotch. They put a catheter into your urethra and another into your rectum (to test abdominal pressure). Then they fill your bladder with contrast while taking images (when you just start feeling pressure, when you're starting to think about finding a bathroom, and when you feel like you're about to explode and must pee at that moment) with a CT scan. Then they stop filling up your bladder and you try to pee out around the catheter (it's an extra tiny one so there's supposed to be enough space). Many women can't pee while in this weird chair so they'll allow you to move to a portable toilet seat. They've done this with a few people with EDS but I was glad to have the woman running the test asking me questions (plus I was nervous and anxious so I couldn't stop talking anyways). Well, I had some weird results as they were filling me up, but I was completely unable to pee out around the catheter (they don't take it out because it measures the pressure in the bladder as you pee). Finally they had to pull it out but I still couldn't get anything out and was trying not to cry from the pain! I had to push until I was blacking out while pushing my abdomen with my hands and bending forward, to the point that they were getting worried. Even when the test was done I went into the personal bathroom and sat on the toilet (I still felt totally full) and really had to try to not cry as my entire abdomen was burning and hurting so bad. I never want to do that test again!
Another reason I don't think the doctor believed me is because she never even requested I make a follow-up appointment. The women doing the test told me I need to have another appointment with her, so I have to call tomorrow. I have a feeling when she gets these results she will be floored. What it shows is that the pressure used to empty my bladder is from my abdomen, not my bladder. This is not good. The entire time they were filling my bladder there was never any pressure from the bladder (eventually it's supposed to stop stretching and cause pressure, so when I said I couldn't stand it anymore they were confused because the bladder was still able to keep stretching). This appears to be a bad sign, especially because of the EDS. Maybe she will take me more seriously now.
After the test I saw the dysautonomia specialist. He fully agrees with the orthostatic intolerance diagnosis I got in June 2012 and is glad that the meds and what I'm doing to avoid the problem are sorta helping. Unfortunately, he was somewhat concerned about the other fainting episodes I'm having that he's never quite come across before (like when I pass out from bending over or stretching while standing). He said he'd like to study me more, but he's not sure it's worth it after the testing I've already been through. He's going to personally reach out to the doctor in Milwaukee who originally diagnosed me to find out why there are almost no records from the tests or from the visits and what his thoughts were/are. He's putting me on another medication to see if that will help even more. I told him about my SSDI and LTD issues and he will write out a letter to send to both of my lawyers and to me (for future reference) to help clear it up. He also said if my LTD lawyer writes out something to help with my case (basically saying 'these are the symptoms she's experiencing and this is why she can't work' he will review it and sign it to help me. That could be incredible. I'll be seeing him again in a few months or sooner if I must. Just having him writing a letter for SSDI so my lawyer can stop trying to force and harass my other doctors - who are not legally allowed to diagnose the orthostatic intolerance and EDS - to write out that they have made or at least agree with a diagnosis they have never studied or been legally certified to speak about.
Almost 2 weeks ago I was also given a new fridge and dishwasher for free because I'm on energy assistance. The fridge kinda sucks (definitely a very cheap model) but it should cost less to run. They were supposed to send someone out to install the dishwasher, but they still haven't, so it's sitting in my garage. My current dishwasher is a piece of crap so I'll be glad when it's installed. When my house is foreclosed in 2 months I can either take any appliances with me (if I end up somewhere that they will allow me to put them in) or sell them. We'll see what happens.
I also had a meeting about getting much more help from the county. I was definitely not holding my breath about it, and was in a really horrible mood when the evaluator came to my house - as it was right after losing ARMHS and being denied EMDR. At least she was receptive (and when she left I apologized for how upset and rude I was because she didn't deserve it). She was certain I'd get tons of help: supportive housing, housekeeping, a PCA or at least someone to help me run errands and get me to appointments easier, money for a new walker, and a bunch more. I've been down this road before and was told there was no way I'd ever qualify for most of what she was asking for. Heck, when the last housekeeper broke the faucet in my shower so I had to literally risk my life to take a bath (and pray I didn't lose consciousness in there because of my conditions) they refused to pay to have it fixed. Why would I think for a moment they would give me housing and services that I'd already been told I could NEVER qualify for? Well, apparently they're going to give me some things, but no one is quite sure what yet. My social worker said they'd help with some of the biggest things like housing and having someone to help around the house and get me to appointments, and they are still working on the smaller things. I'm going to wait until they actually provide these things before I even consider it a remote possibility. I'm sick of getting my hopes up just to continually be told NO WAY and that I don't deserve help. I don't know if it helped providing a massive symptom list for all of my conditions to the evaluator so they could actually have the slightest idea of what I deal with, but at least it seems it didn't hurt me. So maybe in a few weeks I'll find out what is happening.
So the last few weeks have had too much bad, some good, and tons of unknowns. I am winding down my appointments for the winter (I can't handle the cold and snow of a MN winter anymore), so I can spend even more time locked in my house instead of trying to battle weather and traffic. Plus come January or February I have no idea where I will be living, or if I will be homeless, so the last thing I want to do is be dealing with the nightmare situations and still trying to get to appointments. We'll see what happens in the next few weeks. But I know I am totally exhausted from the past 2 days and it's 3 am, so I need to stop here and attempt to get some sleep. I'm in a enough pain that I probably won't sleep well, but that's nothing new. Wishing I could get a massive, but gentle, hug that lasts at least an hour. I miss physical human contact that isn't with doctors.
Friday, October 25, 2013
The hits never stop. Today I was told my appt for next month with a neck/spine/SI joint specialist is being cancelled because he looked at my record and has nothing to offer me except "do PT" or "go to Mayo". Mayo is CRAP! The only people the Mayo helps are those who are rich or powerful. Absolutely anyone can claim they have a "comprehensive approach" and are "#1" at treating anything because it's a sujective statement so they can get away with a complete lie! Going there for a complex condition is grounds for being locked in a psych ward.
I was also told that the medical supply store can't order the 4 legged cane with a soft grip that I want. So either I use a cane that can't support any weight with my weak arms (and how will that help?) or have a handle that will cause bruising and pain every time I use it. So I have to go from place to place to place trying to find somewhere that has the right cane.
I also had another random person come to my house and ring the bell while knocking. (Seriously jerk? As if listening to the bell ring 3 times quickly isn't enough, the actual side-fist pounding on the door immediately afterwards is a great way to get punched when I open the door!) I was half asleep as I tried to not fall down the stairs to answer the door, ready to slam the door in the face of whoever was there. He said he was from some company (insert name that sounds fake, maybe "24 Hour" something or other) hired to see if the house was occupied... and he totally stuttered while speaking, sounding like he had made it up. I said something like "whatever" and closed the door. This is harassment wells fargo! They call multiple times every day! If this wasn't wells fargo, then it was just another person wanting to break in and rob me. Either way, screw you jerk.
I am a hair trigger of rage right now, trying to hold onto the "I don't care". Realized I don't have 4 or 5 appointments next week, I have *7* in 4 days! I cancelled one (with the worthless ortho), pushed back another (it's a follow up that doesn't matter, so I'll try again next month), and I'm planning to cut one short (because it's a 2-3 hour appt that I will likely explode in anger and tears at so doing a short appt is probably better for both of us).
They stole my fight. I'm a freaking zombie now, not caring who does what to me. Come get your piece of me while you can. I can't fight my symptoms, mental health, family, complete lonliness, insurance companies, lawyers, doctors, schedulers, county, state, government, judges, bill collectors, and everyone and everything else that is meant to tear away every piece of me like this anymore. I've done it too long. I can't care anymore. I am going to only do what I can do right now - watch tv, play games, read, sleep, etc. It's too late for anything I do to change my fate, and I just can't fight the impending nightmare any longer. I'm defeated.
I am surrounded by negative and bombarded by negative messages about how I don't "deserve" help. I could only fight it so long, and being told in a courtroom by an ignorant doctor that I'm faking it was the last straw. Of course I'm going to be negative and a downer and be of no use to anyone after all of this! I can't even tell you the last time I had actual physical contact (beyond a handshake) with another human being, which means I don't even get to have oxytocin to try to help me feel better.
If anyone is looking for me to be supportive or positive for them, I'm sorry but I just can't. Call me selfish (many people do) but I can't see beyond my pain and depression right now. I've even been debating going totally internet silent because so many people already hate/avoid me for putting my negativity in their life. It's probably better that I do, so just assume I'll be doing that for awhile.
Tuesday, October 22, 2013
The best way to NOT give someone SSDI is to pick a doctor to speak against the claimant at the hearing who can't even pronounce the conditions, let alone know how they're diagnosed. That way they can say they don't believe you have the conditions and are fully able to work. Then, to really stick it home, have the judge say that since my reports of conditions are unfounded, that they must request that my primary doctor (who is about to go on maternity leave) needs to write up an explanation about why she thinks I have these conditions and am unable to work (doesn't matter that she can't diagnose these conditions and that's why I have so many specialists!). If she can't/won't then they will pay another doctor to look at me and say whether I have the conditions or not. And why would a doctor being paid for by SSDI say that I have conditions that they probably have never heard of? After all, they get paid no matter what they say, so why should they do any research or learn anything when they can just say "Nope!" Oh yeah, and apparently everyone is claiming I have a somatic disorder and am making all of this up, so they're under the impression that I should just be highly medicated with psychopharmacology (no matter how suicidal those meds make me) to shut me up so I can go back to work. Doesn't matter what my body does, because it's all in my head. Yes, because clearly joint dislocations and subluxations are caused by being depressed.
And it's even more helpful when your freaking lawyer does not speak a word in your defense! He never said anything for me! He never asked a question, never pointed out any flaws in their case, and he barely even looked at me or spoke to me!
Please remind me again why the freak I keep fighting and pushing myself? Why do I give a crap? Why in the hell should I even try when clearly the medical community and the legal community are both under the belief that NOTHING I SAY IS TRUE AND I'M JUST A LAZY JERK WHO IS MAKING STUFF UP FOR ATTENTION?!?! I was born and bred to suffer so how dare I ever believe that I'll get anything but? Heck, on the way to the hearing the sky was red - I even commented how I hoped that it wasn't a bad sign for me. Clearly I was wrong.
Tuesday, October 22, 2013
Tomorrow morning is my SSDI hearing. I have no idea how I'm going to make it through the hearing. I'm not even sure if I'll find out a yes/no tomorrow or if I have to wait for the official judgement. My hearing starts at 9:30, but have to be there early to meet with my lawyer, have to drive there (in rush hour), and getting up early enough to be ready for when my social worker comes to pick me up - so I have to wake up about 6-6:30 am to be ready. Too often I don't fall asleep until 5 am, so I've gotta take meds to help me sleep, which will not make anything better tomorrow. My exhaustion is ridiculous.
Today I saw my vascular specialist about why I can suddenly hear my own heartbeat in my ear, sometimes so loud I literally can't hear anything else. Not really worried, but wondering what's up. (Considering I called early last week just to ask "should I see him?" and his scheduler got me in today as the last appt of the day from a cancellation - wondering if he snuck me in - instead of making me wait the 6+ weeks he's booking out, they took me serious but aren't seriously worried.) We made a plan of attack that he wants me starting ASAP. The unfortunate first part is stopping the Lyrica. It's not really doing any good to help with my pain, but come on! I already am immune to most painkillers and the 1 that does help shuts down my nervous system making it so I can't feel much but I can't function at all (I rag doll twice in the 30 small steps to the bathroom). 2nd step is he wants me seeing an ENT - ASAP (if I can't get in before the end of the month I'm supposed to let him know so he can pull strings) - to see if something went wrong in my ears. 3rd step is getting yet another look at the blood vessels in my neck to check for aneurisms or blood clots or something funky (doubtful but worthwhile 'JIC', even though I just had them looked at in August). He asked my thoughts, and I said my best guess is it's due to EDS, possibly from the suspected organ prolapse pulling everything else above it down too or just from the current meds I'm on that have increased my blood pressure to normal which is allowing blood to back up in my head when my neck is bent.
Best part of this specialist is that he not only listens, but he knows I know my body and my conditions so he asks my thoughts and worked with me to create a plan of attack. Though he thought I was talking a little faster than normal (for me) so they drew blood to check my thyroid. It's been tested dozens of times, but why not check it again? Perhaps getting my adrenaline under control might show some changes in other hormone levels.
I am so stressed I want to curl up in a closet and pretend the world doesn't exist. Unfortunately I can't. I have 18 appointments this month. That doesn't include picking up meds, getting new braces, trying to get a new walker and a cane, dealing with insurance companies, dealing with lawyers, dealing with county agencies, being harassed DAILY by wells freaking fargo, having no idea where I'll be living in 3 months, not having enough energy to run errands or make food to eat, etc etc etc. Being told my new LTD lawyer wanted a complete list of symptoms for all of my conditions was so overwhelming I couldn't even deal, so I had to have 2 friends help me (thanks Sherry!) to realize that just reading the list is overwhelming! I just can't even deal. Having no money at all doesn't make anything easier! My social worker is even telling me to start packing up my house, but when I bend over I pass out! I can't pack! Yeah, where's the closet I get to curl up in to hide from the world?
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