Saturday, June 29, 2013
I sure haven't and never will due to my disabilities (and it doesn't interest me). But a few of my family members have done several bike tours around the US. If you'd like to read up on their adventures, check out their website: benthub.com/
They're a week into a trip from Wisconsin to Maine, or as far as they can get before some of them have to be back for work. I know one of them has to return home after 1 more week, and I think the rest are staying out for 2 weeks after that.
Thursday, June 27, 2013
What an up and down day, again! I met with a new gastroenterologist today, who was pretty good. He listened to me, paid attention, trusted what I said, and we came up with a plan. I'm going to have another endoscopy for a biopsy to see if the eosinophilic esophagitis is back, and if it is then I'll get a liquid steroid to swallow, instead of the steroid inhaler I used in the past, to treat it. He also told me I can increase my miralax intake as I need to, but considering the high cost he's giving me a prescription for the golytely (sp?) drink that's used when someone is cleaning out for a colonoscopy and use that like the miralax. He also sent in prescriptions for senna and docusate sodium - not sure if insurance will cover it, but we're gunna try! I'll start with one, try it for a few weeks, then if I need another I'll try that. He also seemed to appreciate my explaination of what I feel is causing my GP (Ehlers Danlos complication) and should it get bad again, then he'll be able to help me.
The sucky part of the day happened just as I was leaving to go to the appointment. I had hard time getting up and moving, so I was late getting out the door (I still got there in plenty of time, but I had wanted to leave earlier). It's a good thing I did, because as I was throwing on my clothes and getting my stuff together, I heard my RFID lock on my front door being played with (it makes certain dings and tones when it's being used). At first I didn't realize what was going on, but some guy had pulled up to my house and was trying to break in! I tried to sneak a peek through the window downstairs, but the bushes in front of the window blocked me from getting a good look. I didn't want to walk past the door while he was there (I have a hard enough time with stairs, let alone worrying about who was on the other side of the door!), so as he headed back to his vehicle I got upstairs but the garage roof was in the way so I still couldn't get a good look at the vehicle, and I didn't get a good look at him. Well he not only screwed with my lock (which is dang near impenetrable - it holds up to a glock handgun, a shotgun, even a sledgehammer - and since there's no keyhole no one can do a lock bump to open it), but he tried to force the door open. He never knocked on the door or rang the doorbell - he just tried to get in. He was carrying a camera though. I have no clue what he was doing here! The next driveway down has a house for sale, and if he saw the public notice that my house is going up for sheriff's sale on 7/25 (did he mistake that for 6/25? I need to get the paperwork in to postpone it) maybe he thought the house would be abandoned or something, but no one has a legal right to walk into a house without permission in either case. Not only that, but he didn't knock or ring the doorbell to double check if someone was home, so that's freaky. Well I waited until he was gone, checked to make sure he wasn't on the street, then walked out and called the police as I got in my car. I drove the neighborhood looking for his vehicle, but didn't see it. I had to get to my appointment, so the police called me back while I was driving and I told them what happened. They said they'd drive around and check things out, because I couldn't miss this appointment (I might not have gotten another appt until Sept). I tried to rush through the appt (like that's ever possible) and it took 3 hours to get back home. I saw no damage or any further evidence that he came back, but instead of running other errands like I had wanted to do while I was out, I rushed home and didn't want to leave again. UGH!
BTW, I'm glad I was here when this happened, not out, because even though I'm physically weak, I can scare the crap out of just about anyone just by my voice, if need be. I grew up being bullied and treated like crap by many of the people around me, especially my parents, which means now, when I have to, I have a loud booming voice with wild gestures that will scare off someone pretty well. Also, my cat would've been in danger had he gotten inside, so I would've flipped out and screamed bloody murder. Of course I could've just gone into a tirade about medical issues using techical jargon and creeped him out, or just told him I'm highly contageous and if he doesn't get the antidote in an hour he'll die, then send the cops looking for him at an ER. haha
So yeah, I had a hard time concentrating on the appointment because I was freaked out, but I got through it. I'm going to keep a close eye out for this guy and try to not let the fear rule me, but I'm going to have to try to not let it get to me. I have too many things I need to deal with to be terrified over what might have been a really horrible mistake this guy made without thinking. Still, anyone willing to send positive thoughts my way that this never happens again, I'd happily accept!
Wednesday, June 19, 2013
First, I wake up with an email from my LTD lawyer who is saying the Hartford is being jerks again and breaking contract rules and laws yet again, but after 6 months they're STILL working on part of my claim.
Then, I go to the orthopedic appointment in which I get knee braces (that are causing a lot of pain actually ugh) and am told to get orthotics to help with my arches, my ankles aren't 'that bad', and there's nothing that can be done for my hips, back, neck, or shoulders. He also forgot to address my wrists, so I'm planning to check out some OTC braces/supports for my wrists (I pulled out my old OTC ankle supports).
I came home, annoyed and overheated (I don't like being outside). I reread the letter from the Hartford and called my LTD lawyer. We have some ideas about how to keep at them to do their jobs (including talking to the Dept of Commerce) and what approach we will focus on right now. I'm crazy annoyed and frustrated by this, but trying to be proactive and not emotional right now.
Then, after a quick call to check on the continued saga for not being able to get a GI appointment at the Univ of MN clinics, I had a random phone call. I enter a lot of sweepstakes whenever I can - as long as they're free - because sometimes you do win. A few months back I won a $50 visa gift card for groceries from Save On Everything, and I thought that was awesome. Well, I found out Dish has several sweepstates on their website (though some are pains in the rear to enter) and I've been entering some of those. The phone call today was to say that I WON! I didn't win the big prize (it was a trip that would've been crazy difficult on me) but I won an iPad mini. hehe In a few weeks I'll have my first new piece of technology (excluding my flip-phone and satellite receiver which don't count) since like 2006 or 2007. Woohoo! I've also been thinking I wanted something like this for awhile, so hey, why not get it free? hehe :-D This totally made my day.
After that comes yet another pretty good phone call. I got a call from the GI department at the UofM and they've had some cancellations so instead of waiting for September to be seen, I'm being seen next week. Yehaw! More good news!
Now I'm a little afraid to do much of anything else because I don't want the roller coaster to fly off track and crash on me. haha Of course, I'd totally accept PCH showing up at my door in a week and a half with a big prize and consider that the roller coaster exploding in a million pieces of goodness! hehe
EDIT: Grr Figures! Doctor is refusing to write a letter to help battle the LTD issues. Now I'm waiting until I can see the new neurologist and hope he'll help.
Thursday, June 13, 2013
I started typing about my day in a message thread in a team, but realized it was getting very long. I should probably also use this time to update people with what I'm currently dealing with. So I'll update then talk about the insane and scary day I had today. (If this blog is too long for you, sorry. I wish I wasn't dealing with so much, but I am so I'm updating on what's relevant to me right now.)
For those who don't remember, I have numerous medical conditions that are progressive; many of which are barely treatable and completely incurable. (If you want a reminder, I have them listed on my sparkpage. If you want more info, please ask.) My conditions have gotten so bad that I'm no longer able to work and I'm not even entirely safe living alone; which was proven today (I'll talk about this later.) Yet long term disability has been delaying making a decision about my case for SIX MONTHS - which completely decimates their contract to have a decision within 45 days with an option 45 day extention. Social security is also denying me and I have about a year to wait before I can get in front of a judge to make a determination. In the meantime, I haven't had any real income since January 2012, with only having gotten some short term disbility that ended in April 2012. I was 30 when I had to stop working so my 401(k)s were tiny and barely lasted until fall. I stopped paying my mortgage in October 2012 and started racking up credit card debt for the first time in my life (I'm now at around $8,000). Social services have been completely failing me, as those who are supposed to help me keep failing me by not doing their jobs. Even my ARMHS (adult rehab mental health services) worker, who visits me for a few hours once a week in my home, is completely overwhelmed by what I'm going through! She's very disappointed because the aid and support I need are being denied or delayed for months on end, and there's little she can do for me.
My doctors have also been failing me significantly. I'm quite unique but the information is there if they took the time to look it up. Yet when I bring the information to them they don't believe me. So it's a battle just to try to get the diagnoses, let alone get any form of treatment to try to slow the progression! Add in that disability is based only on what the doctors say, not about what the patient is actually going through, and you can see that I'm in a terrible mess. I can't afford about $3,000 to fly me and my (horribly unsupportive, narcissistic, and emotionally abusive father) to Philadelphia to see my GI specialist. For me to see my neurologist, endocrinologist, and a new gastroenterologist in Milwaukee it was a free trip (donated medical flight and staying with relatives for free), but now I can't get my insurance and the hospital there to figure out if anything will be covered or if I'll be expected to pay thousands of dollars for the procedures and appointments I'm supposed to be having. My local neurologist (who seriously doesn't have the capability of handling a case as complex as mine) told me not to come back because she will not do anything further for me. Thus, I have to almost totally overhaul my medical team. I recently found a vascular specialist at the University of MN who took pity on me even though his tests didn't show much he could help with. He's allowed me to use his name to get appointments with other specialists there (considering I've been denied appointments in the past, I need a doctor to back me up), but I still have to call and make all the appointments and hope that I can get in with them and get some testing and procedures done before my insurance goes haywire again. My primary care doctor doesn't seem to want to listen to me or believe me about anything; however, I have been able to stick on a topic with such certainty, and prove what I'm saying (even if she chooses to disbelieve tests and documentation), to the point that she'll give in and do what I ask (I'm sure just to shut me up). I can't replace her right now because I need at least one doctor who can fill out paperwork and deal with medications for me. But her dismissiveness is really a slap in the face and hurtful.
I stopped paying my mortgage in October because I'm out of money, so now I'm in foreclosure. Since I have no income, I can't modify my mortgage. My sheriff's sale is scheduled for July 25th; after that I'll get about 4 months to pack up and get out, with no recourse. I'm working with the local CDA (community development agency) to try to slow down the foreclosure as I wait (apparently forever) for disability to pay out or until I can figure out where to live. I have 1 more chance to delay the sheriff's sale by a few months, but if I don't have income and a mortgage modification by then I'll have less than 1 month to pack up and move out. My social worker keeps throwing around ideas about where I could live, just to find out that she's wrong and it's not an option. There is just 1 elderly/disability apartment complex in the county, but because I have no income every other person will be given a place before I do, and it can be months or years before space even opens up. There's no way I can get in there before I lose my house. She threw around other ideas, but those are all fails too (I'll talk about this later.) I can't even stay in a homeless shelter because the only one with space in the county requires all people living there to do household chorse, which I can't do because of my disabilities. Nearly every one of these options will force me to give up my cat, also. Essentially, either they negotiate to give me adult foster care where I get 1 small room for a few months or I say screw it to all of them and move in with a friend in Georgia (which would suck only because I don't want to have her having to support me financially and help me physically, putting added stress on her that she doesn't need).
In amonst all of this, I'm trying to combat the effects of growing up with severely narcissistic parents, having no family support (except that which they can exploit to claim they're perfect parents and/or to have the chance to emotionally and verbally abuse me whenever they're upset about something), having little friend support (it drives me CRAZY when people say 'I'll help you' then conveniently forget that I even exist - if taking an hour or two out of your month to stop by and say hi to me is too much, then don't ever offer stopping by weekly), and having severe depression and anxiety issues (turns out part of stems from symptoms of my conditions - for instance one is causing adrenaline to be released frequently, in large 'doses', with no real reason). I also recently saw a study that showed people who have a diastolic (bottom) blood pressure under 70 for extended periods of time are at a high risk of brain atrophy, and my blood pressure is frequently in the 80s over 50s or 90s over 60s, so that is probably a large factor in my continued cognative decline (which my doctors say is impossible). Not only do I have to deal with my medical issues, but mental health issues, and having little support and zero stability in my life. I should just change my name to 'Overwhelmed'.
My ARMHS worker was here yesterday and we spent time talking about all that needs to get done, what I can actually do versus what I have to wait on others to do, and came up with a few things I need to try to accomplish this week. Today I tried to get a bunch of it done because tomorrow I have a dentist appointment and a couple errands to run which will take over my day, I can't do this stuff this weekend, and I can't guarantee I'll have any energy on any day, so when I can force myself to push through everything then I must do it. There's plenty of days that just walking to the bathroom exhausts me and forget making anything even semi-healthy to eat! So here's what happened today:
I spent a lot of time making phone calls. I called the Attorney General's office to see if they can help with the continuing saga of my long term disability complaint. They sent me to the Dept of Commerce who said I should write up a complaint about the LTD company and include the failure of my lawyer's office to pressure the Hartford to make a decision. I had other things to do, so writing that up will be done in the next couple of days.
Called social security lawyer's office and got crapped on for awhile while he played the game of 'not my fault your claim is going nowhere' and 'you don't necessarily deserve anything'. My voice was starting to raise, so we hung up while he took some time to look at my records, again, before calling me back. The second discussion was more effective (because then he realized that I'm a serious case that he has no right to downplay). He's going to submit to get me in front of an SSD judge quickly (because I'm about to be foreclosed and homeless), and as I kept pressing he suddenly came up with an idea to try to show my cognative decline: show that I'm 27 credits away from my bachelor's in accounting and pulled all As for much of the time, which then dropped to some Bs before I had to drop out because of my medical issues, then attempt to show that my current cognative level is significantly below what it would have to be for the success I had been having while completeing the degree work I had been doing. Not sure if it'll work, but it's worth a try. I'm going to have to keep hounding him though, because his office has already lost paperwork I sent them, 'forgotten' to return phone calls, completely ignored emails, and all around treated me like I wasn't worth his time. But I can't say starting over with a new lawyer will be any better.
Talked to the local CDA (who's been trying to hold off my foreclosure) and got info about how to postpone the sheriff's sale. The paperwork needs my concentration, so I'll do that this weekend hopefully (I have until beginning of July to get it in). He also told me that there are really no options in the county for housing me when I'm foreclosed, which conflicts with what my social worker said - and I trust this guy more because he went and talked to the people who work in the programs. Clearly my social worker is, once again, failing miserably at her job. (Yes I know they're overworked at all, but there's no excuse to ignore phone calls and emails for months and definitely no excuse for why she waited 2 months to do something she told me she'd do the day after promising me it'd be done. My ARMHS worker is appalled by this mistreatment.) The CDA worker emailed the information that I'm not eligible for the housing my social worker said I should fill out paperwork to get, and I forwarded it to my social worker and ARMHS worker so they can figure it out.
Also called and got an appointment with dermatology at the University of MN, but it was 4:30 when the offices close so hopefully tomorrow I can make appointments with GI, endocrinology, neurology, and orthopedics. I'm really hoping that this will be the last overhaul of my medical team for awhile, because I'm so sick of having to convince every doctor that I'm not lying and that I'm far more unique and rare than they could comprehend. Honestly, I teach my doctors more than they treat me, so I'd really prefer to stick with some doctors for more than a year this time!
Also filled out a quick bit of paperwork to apply for appliance assistance - they'll check and tune up several of my appliances or replace them if need be. Funding for the program is very limited so I'm hoping they'll be able to at least help with my A/C (which is like 30 years old and seriously inefficient) and tune up my furnace.
I also had to put away my empty garbage can, but that was a fail. My stupid sociopathic neighbor moved my can into the grass so he could put his in the driveway, which makes it even more difficult for me using my walker! And the lid was flipped open so rain collected inside! One of the neighbor's constant houseguests even pulled one of their shared cars right up to me as I was fighting with the can and completely ignored me! I was trying to dump out the water, mud was flying around, and finally I yelled how much I hate my neighbor for being an ass; well another neighbor I've never met heard me and saw me struggling so he came over to help. I was very touched - especially because I was getting scary mad by then. He dumped out the water and pulled it into my garage for me.
Here's the scary part of my day. Unfortunately, today was around 80* and very humid, though cloudy. By the time I got inside and wiped the mud off my walker and shoes, I was in really bad shape. For the next hour my head felt terrible, almost like I was suffocating (I know the feeling too well). I kept trying to slow down and breathe through it, but nothing I was doing was helping. I was in the kitchen when my body failed and I collapsed. I normally have adequate warning: if only my eyes go black I just have to sit down and rest, but if I'm going to go unconsious my ears shut off then my eyes go black and I have 5 seconds to direct my fall in a safe direction. But I had no warning like that this time - my eyes never even went black. It was like every muscle in my body just gave in at once and I fell backwards, maybe 1-2 feet from taking my head out on the kitchen table. I laid there with no ability to move for a minute or two, wondering what the heck just happened, before I could lift my head and slowly use a chair and the table to lift me back to standing. My cat even came over to check on me because of the thud I made and then not moving. This is a new one for me, and I'm not sure what to do about it. Many doctors can't understand what orthostatic intolerance (aka POTS, postural orthostatic tachycardia syndrome) is, let alone believe that the condition actually exists. If I had called for an ambulance I would've been sent right back home. All I can do now is just hope it doesn't happen again, especially not when I'm out of my house.
To summarize: I'm screwed, I'm screwed, I put in a ton of effort today that's probably not going to do anything to help me because people apparently enjoy screwing me over, I'm screwed, and I had an episode that would've made most people completely terrified but I just have to live with it.
Oh, and by the way, do you know the difference between a dislocation and a subluxation? I had to learn the difference so I can better explain my joint problems to my doctors. Imagine having your entire left side not working well then have your right knee and hip subluxate or having a rib subluxate and completely stop you from breathing with the most blinding and paralyzing pain you've ever felt that you must fight through to adjust the rib back into place. Then imagine having a constant migraine that is unresponsive to treatments, frequent blackouts, adrenaline flooding your body at all hours even when you're trying to sleep, your stomach and intestines only digest when you're laying down so there's no such thing as eating when you've got things to do, being in a constant state of exhaustion that no amount of sleep will ever diminish, having non-stop pain throughout your entire body that is unresponsive to all painkillers excluding those that essentially shut down your nervous system (but you only get to take the meds in serious situations because it is impossible to function while on them without getting used to them in which they no longer work), having a constant threat of huge blisters forming on your foot which make it impossible to put any pressure on that foot whatsoever, and though all of this you aren't sure where you're going to live in a few months while realizing that living alone is probably crazy dangerous but it's currently your only option. So yeah, do any of you think this is not disabling and I should go back to work? Would any of you consider working alongside someone with these symptoms (and this doesn't even cover them all)? Does anyone begrudge allowing me to have some state aid and support so I can attempt to find something, anything to do to make my life worthwhile? Raise your hand if you think you'd like to try walking in my shoes for a week, or even a day.
Sorry this is ridiculously long, but I know a few people were wondering what was going on with me and there's a few things I just wanted to get on a soapbox about because I am so furious about it all. If you don't understand most of what you read, don't worry about it. I barely understand it and I'm living it. If anything doesn't make sense, let me know and I'll try to clarify; heaven knows I can't even keep my own thoughts straight and I don't feel like editing this blog a dozen times yet tonight.
If anyone knows of a website where I can try to set up an online fundraiser to help pay bills, help with the continuing costs of the lawyers (especially the $3-4,000 already paid to my LTD lawyer for doing almost nothing), help bring down some of my credit card debt (due to medical bills, medical travel, OTC meds, regular bills, living necessities like TP and feminine hygiene products, food for my cat, etc adding up to around $8,000 currently), and have money available to hire movers for when I'm foreclosed, (not to mention the $10,000 I owe my parents now), it'd be really appreciated. I don't expect to be able to pay the $10,000+ that's owed on my mortgage so I don't become homeless, but that'd be nice too. I've looked into a few sites, but some of the fees will be ridiculous!
(If you've made it to the end of this blog, you're one heck of a trooper and I greatly appreciate it!)
Thursday, June 06, 2013
Today (Weds, June 5th) was my 32nd birthday. Last year, I threw a pool party here on SP to celebrate, and I want to do something similar this year. I'm posting this late in the day, but the beauty of an SP party is there's no start or end time, so everyone can participate whenever and however they want!
This year I'm having a big photo shoot for everyone! I gave myself a photo shoot goodie to set up the party. Joining in the fun is easy - give YOURSELF a goodie that you want to bring to the party. Then comment here on my blog with the reason why you gave yourself that goodie and/or what accomplishment you've done that you want to celebrate.
My sparkfriends are pretty awesome. Many of you are very supportive, which is great considering I'm on such a different journey than most of you. I like throwing these parties because it reminds us all that we need to celebrate that we accomplish more than we realize. I also love seeing what goodies people give themselves and why, because then I get to know my sparkfriends even better. Plus we get to be proud of our efforts as well as support the efforts of others.
Last year I gave out a bunch of goodies as invites; unfortunately this year I'm exhausted and don't have much focus so I won't be doing that. Instead, I'll give a goodie to anyone who joins in my party by giving HIM/HERSELF a goodie then posting here about why they chose that goodie and what s/he wants to celebrate.
Ready? Set. CELEBRATE! Pose for the camera! Work it! Love yourself! Show off your success! That's it! Woohoo!
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