Update: too much bad, some good, and tons of unknowns
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.