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Another up and down day - new GI appt & a scary incident!

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!

  
  Member Comments About This Blog Post:

TC8890 7/9/2013 12:30AM

  I am fairly new to Spark.....I don't know where you live....but my husband was in the military...gone for a year or more at a time...I hae 6 or fur babies to take care of....so I CONCEAL AND CARRY......................I would shoot and kill to defend my home if I had too.....something to think about...I am A CHRISTIAN...but i DO BELIEVE....I have an right to be happy and safe...and to defend my family if I have too....................thanks

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NPA4LOSS 6/28/2013 7:56PM

    Glad that everything turned out OK. Be careful. I am glad that you like the new GI DR. emoticon

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LADYPYE 6/27/2013 10:11PM

    I am so glad that you weren't hurt and your home violated. Hopefully, he will not ever come back.

Thrilled to hear that your new doctor is listening to you. That takes some of the worry off. Not all but some.

Hope you are well,
Teresa
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MOM2ACAT 6/27/2013 4:13PM

    That is scary! I hope that guy does not come back.

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MISSCUS 6/27/2013 3:48PM

    What a tough start to your day!! You're a strong woman, to get through this and make it to your appt on time. So sorry about the near breakin at your house. I've had breakins before at my homes in the past, had a knife held at my throat for 5 hours during the night on my 16th birthday, and it sure leaves you with feelings of fear and feeling vulnerable all the time. It's hard to relax and sleep easy for fear of it happening again. I worked nights my whole life for fear of sleeping in the night.

So happy for you to hear about the new GI doctor. You need to be heard, and sounds like he's been listening!! Good doctor. I truly wish the Golytely was sold OTC. The closest thing to it is Mag Sulfate. I've given Golytely by the gallons to many patients, and then I see the video or pictures of how cleaned out they are when they get scoped. Many times, after a pt drinks the gallon, all their intestinal pains and problems go away. If it was OTC, I'd do it twice a year. I learned in Nursing school, that "What the patient says it is, it is". for everything, every complaint, pain or otherwise. I just cannot believe that your primary MD would not vouch for you!!. They are required to fill out the paperwork for disability!!! I am outraged!!! I think I would give her the forms, and tell her to fill them out. See how she does, and either turn them in or not depending on what she writes.

LOL, I can just picture you and hear your booming voice, I know you would scare the crap out of anyone!! That made me laugh.
Seems like we all have up and down days, just being alive. It's part of the Human Condition I think.

I say my prayers almost every day, and you are in them. I pray that things work out and that somehow, someway, you get to keep your home and that you get approved for LTD. How long have you waited now for the LTD?? It took mine 8 months, for SSDI. I used Binder & Binder Disability Attorneys. It cost me $300. I saw their ad on TV, and got on phone with them that very day. I think it made a difference.
I wish I could come live with you and help you each day, at least I would have some purpose. I would if I could!! I just don't think I could tolerate the cold winters though. Not after you told me how you have to dress for the cold.

Keep us posted. I worry about you. My issues are small compared to yours. It's just not fair. I will pray you get your LTD asap. BTW, I have been reading your blogs. But after I felt so overwhelmed at what you've been going through that there just weren't any words I could say to make you feel better. I think I am going to go back to the Ellen website and resubmit your story. I'll do that tomorrow morning.....Hang in there, I know it's harder than heck for you!!

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RISINGBLUESTAR 6/27/2013 6:33AM

    It's good that you found a doctor willing to listen and who actually wants to help instead of just pushing you to the side. :)

As for the incident, it's awful. It is def. possible that the guy thought the house was abandoned. Still, he should have knocked to made sure that the house was empty. Part of me thinks that wasn't the case. The car in the driveway or in front of your house would have tipped him off that someone lived there and was home. Sure, cars can be abandoned too but it's pretty obvious when they are. You are driving your car. It's functional. That is an indicator that someone lives there. Whatever the case, it was a scary incident! It's good the police know about it. Maybe you could talk to a couple of your neighbors and let them know to keep an eye out. Neighbors aren't always the friendliest people but when it comes to situations like this, usually, they listen.

That probably doesn't make you feel a whole lot better it's good that this happened before you left because you are aware and can take precautions. Something like this may never happen again. Hopefully it doesn't but being cautious can't hurt.

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GHOSTFLAMES 6/27/2013 5:02AM

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OMG what a roller coaster day!

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.

  
  Member Comments About This Blog Post:

RISINGBLUESTAR 6/24/2013 9:03PM

    It is irritating when you are trying to get something done and get the run around. It should not be that hard to get help but "should" is a fallacy so what can you do? You are already trying your hardest to get everything in order. I don't understand why the doctor would refuse to help. Keep trying and annoying all of the people who have to annoy. Sometimes, it just takes persistence!

It's awesome that you won an ipad mini! emoticon :)
Enjoy it!

:)

Comment edited on: 6/24/2013 9:04:08 PM

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IMAVISION 6/21/2013 11:31AM

    I am saddened to read of all the trials you are faced with. I hope it helps, at least in some small way, to know that I care & that I am praying for God's perfect will to unfold in each area you are dealing with.

Congratulations of winning the iPad mini. I am not sure what that is - I really must step beyond the the 1980's technology. emoticon Anyway I am thankful that winning brought some pleasure to your day.

Just so you know - PCH will be arriving with the flowers & big check at my door! I have been waiting to welcome them since the 1970s! emoticon

God bless!

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NPA4LOSS 6/20/2013 12:48PM

    Congratulations on the good news. I figure if the goods outweigh the number of bad things on a day then I am having a good day! emoticon

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MOM2ACAT 6/20/2013 12:19PM

    Congrats on the gift card and the iPad!

I hope the neurologist will write that letter, it's shameful that you doctor won't do it.

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LADYPYE 6/19/2013 11:00PM

    That does sound like a roller coaster day. I am glad to hear some good news for you.

Hugs,
Teresa

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An update, plus a difficult day with a scary incident

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!)

  
  Member Comments About This Blog Post:

CARMEN327 6/18/2013 9:59AM

    Wow! You are the trooper! Hang in there. Hugs.

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LADYPYE 6/13/2013 11:48PM

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MOM2ACAT 6/13/2013 4:38PM

    emoticon I am so sorry; I wish I had some helpful advice. It breaks my heart that you have the financial stresses on top of the health issues, and I pray that you find a safe, affordable place where you can keep your cat.

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RISINGBLUESTAR 6/13/2013 6:21AM

    What you are going through is much more than overwhelming. I'm sorry you are not getting the help you need. It's a shame that people who actually need help can't get it and others who don't need help can play the system and get it easily. I just can't wrap my mind around it. I really hope that something good happens for you and soon!





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LOSE4LIFE47 6/13/2013 2:11AM

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Come to my Sparkpeople birthday party!

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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  Member Comments About This Blog Post:

HEALTHY-SPARK 6/9/2013 1:26PM

    Happy birthday! Hope that you had a great one. I'm bringing a seedling to the party -- I love plants. All they need is a little attention and TLC, and they grow and blossom -- sorta just like people. :-)

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OKIE30 6/9/2013 1:10PM

    Congrats!

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MOM2ACAT 6/9/2013 1:08PM

    Thank you for the Spark Goodie!

I gave myself sunshine, to remind myself that even on my hardest days, there are brighter days ahead; and on the days I am feeling blue, I know I can come to Spark and get support and encouragement from my friends here.

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LADYPYE 6/8/2013 11:18PM

    Well, I made my decision. The goodie I gave myself is a good pair of Workout Shoes.
Without good shoes it seems impossible to exercise.
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LIVINHEALTHY9 6/7/2013 9:06PM

    Happy Belated Birthday!
I hope you had a great virtual party.

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LADYPYE 6/7/2013 4:39AM

    Happy Birthday!

On the goodie for myself, I will have to think on that one.

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CARMEN327 6/7/2013 12:54AM

    What a great idea. I am bringing sushi to share, and i am celebrating 1 year of sparking for me. I have lost 25 lbs and have gotten so much mobility back. emoticon

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NPA4LOSS 6/6/2013 7:44PM

    emoticon I gave myself a massage goodie and I gave one to you also. I am a little late but we deserve the best.

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MOM2ACAT 6/6/2013 5:25PM

    Happy Birthday! emoticon

I'll have to do some thinking about the goodie I want to give myself, too tired to make any decisions right now, but I think it's a great idea!

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MISSCUS 6/6/2013 4:23PM

    emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon
I'm wishing you a HAPPY 32nd BIRTHDAY!! I gave myself a goodie too, a book, because while I am at your party, while everyone is enjoying themselves, I will read a short story out loud to everyone. It will be a funny story, and make everyone smile, laugh, and feel really good. And YOU will be smiling too!!
Huggs,
Phyllis

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GUBITNIK 6/6/2013 8:20AM

    Hope you have had a very happy birthday!

What did you send to yourself? As a matter of interest?
I chose balance board. A learning aid, for the life lesson I need.



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RISINGBLUESTAR 6/6/2013 1:52AM

    emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

Happy 32nd birthday! emoticon

Love the idea of your spark birthday party! :)

The goodie I gave myself was a key. It represents being open to new opportunities and serves as a reminder for me to put my guard down (throw my shyness out of the window) and be open to trying new things, talking to different people, etc. I know a lot of possibilities are in my hand and I hold the key. Now I just have to put that key to good use! emoticon





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This is what it's like to be in my shoes.

Thursday, May 23, 2013

Here's a taste of what it's like to be me, for anyone who is interested in the symptoms of my multiple medical conditions.

Last night I got involved in a discussion on twitter while doing other things online, and I ignored my body yelling at me to eat. The discussion had me crying (complete strangers were showing me support) so I had no interest in food. This was a mistake. My body processed what I had eaten earlier more quickly than I realized, causing my blood sugar to plummet. Unfortunately, when my blood sugar drops very quickly into the 40s (which is where it is when I have symptoms), the symptoms are horrible. I am freezing cold, but I sweat so badly that my clothes and everything near me becomes soaked. I get the shakes and my body basically freaks out. This started happening last night. However, due to my gastroparesis (partially paralyzed digestive system), there's no way for me to really affect my blood sugars enough to stop the problem. Eating or drinking something sugary can actually cause my blood sugars to plummet even farther, as my body would increase even more insulin to counteract the food it is about to get. Therefore, all I can do is ride it out.

As I recently found out, Ehlers Danlos can cause inappropriate amounts of hormones and neurochemicals, including adrenaline, even if none should be released at all. Essentially, my body has a hair-trigger for releasing adrenaline, so even a small sound, smell, movement, or anything at all can cause a massive release of adrenaline, in addition to the possibility of it being released all the time in moderate doses. It's like my body is in panic mode at all times every day, and the slightest trigger can send it far beyond overdrive. Combine this with the fact that when blood sugars fall the body releases adrenaline to help force the body to survive while it tries to find stores of sugars to release.

So my body is freaking out from low blood sugar, I'm emotional from having a converstation, and my adrenaline is already a problem, yet more adrenaline and other hormones are released so quickly in high doses that every part of me simultaneously feels like it's going to explode and shut down. Up until a year ago, this would've made my mind freak out. Now I have to convince myself that there's something physically wrong with my body but it doesn't have to make my mind freak out.

For 6 hours I was on my computer (mostly doing PCH entries which require little more than mouse clicks) and watching tv shows I really didn't care much about, while I had non-stop adrenaline coursing through me. I was laying in a puddle of sweat, my entire body was shaking, I was nearly continuously reminding myself that 'this is a PHYSICAL problem, not a mental problem, so don't give in to all the horrible thoughts and memories that are flooding my brain making me hate anything and everything that's ever happened to me', and every few minutes I would get a jolt that made me want to get up and pace or move around or do anything that will get the tingles and stabbing pains in my body to stop. However, with the constant pain I'm in, the high risk of blackouts and fainting I have due to my blood pressure and heart rate problems, and the risk of dislocating any joint in my body were I to have a sudden shake or spasm while I was walking causing me to lose my concentration or balance, getting up and moving is the last thing I should have been doing. Still, sometimes I couldn't stop myself and I'd get up and move then convince myself to sit/lay down again in a few minutes.

Within these 6 hours of having a complete lack of control over my body, I took the meds I needed to take before going to sleep. Yet 3 am came and went and I couldn't imagine closing my eyes (when my body is freaking out like this closing my eyes can make everything worse), and my allergies were freaking out along with everything else, so I could barely breathe. I took a prescription allergy medication that I usually reserve for when my allergies are really bad, because it tends to knock me out. I figured it should help me be able to breathe again and help me fall asleep. Finally around 4:30 am I fell asleep.

At 5 pm I woke up. I knew I had had a fitful night of sleep, though I couldn't remember any of it. My body was sore, I was extremely exhausted, and all I wanted was to fall back asleep. Unfortunately, I'm out of one of my medications so I had to wake up enough to run out and pick it up. I had no interest in food, my body felt like I was covered in cement, I felt like I was trying to breathe through kinked straws, my head was so foggy I could barely focus enough to turn on the tv, and my mind just kept screaming at me that nothing is worth me being awake. I grabbed some cookies that were on the table to munch then laid back down on the couch (which is my bed - if I was in my bedroom downstairs I would never had made it up the stairs for food or for anything else). Finally around 7 I started forcing myself to move around, throw on some clothes, and at 8 I left to drive the mile to pick up my meds. By the time I got back at 8:30 it seemed like too much to make it up the stairs, get off my clothes, try to eat a little something (a few strawberries w/ cream cheese, followed with eating Pops cereal out of the box so I can lay down while eating). By 10 I was feeling like I was in hell being tortured. The physical symptoms are wearing me down and the depression is hitting me extremely hard, as the screwed up hormones and neurochemicals are in strange states of still continuous bombardment and/or so depleted there's nothing left when I need them.

As I lay here right now, every part of me hurts. Every muscle and joint aches like I've been running and exercising non-stop for days. My eyes are burning like they're on fire or coated with acid. My heartbeat can be felt throughout any part of my body that isn't numb, to the point that it's actually distracting. No matter how hard I breathe it feels like I can't catch my breath, and taking a deep breath feels like cement blocks are sitting on my chest ready to crush me. The depression is horrible, bringing thoughts into my head that would make the happiest person in the world feel completely worthless. My body is screaming at me that it must sleep, right now, no excuses, but my mind wonders if I fall asleep right now will I ever wake up - and should I even care if I wake up, considering if I don't I never have to feel like this again. But through all of this I have to keep telling myself that this is a PHYSICAL problem and I don't have to listen to the depression. The mental health problems I have are always there, but they do NOT have to jump on the bandwagon with the PHYSICAL problems. I MUST keep them separate.

This is what my life is like. This is what it is to be me. I face it alone. The doctors seem absolutely clueless, my family is completely screwed up and unwilling to help me in any way (except that which will benefit them), and I have no one who can come to my house to take care of me at times like this. I'm the only person I can count on to always be here.

I am terrified. My diagnoses are not good ones to have, because they just get worse. There's no easy fix, no hard fix, even difficult treatments are almost impossible to get. As I get worse, there's no one here to say 'let me do that for you', 'you can lay there as long as you need and I'll take care of everything', and no one here to even give me a hug (which would help my body release some happy hormones to counteract all the horrible ones being flooded through my body). If I can't get up to get food, I don't eat. If I can't get up to get water, I go thirsty. If I can't get the energy to vacuum for a few weeks (like lately) then my allergies flare out of control (like they are now). If I can't force myself to get out and pick up the items I need (like medications) then I don't get to have them. And when all the hormones and chemicals in my body are screaming at me that life is not worth the torture, I'm the only person who is here to try to be positive.

I'm sorry if I made you feel bad because you read this. I'm sorry if you pity me now or if somehow you feel I've permanently damaged your life by telling you about the last 24 hours of my life. I'm sorry if you feel I'm not good enough to be around you on spark (I've had enough people attack me or abandon me here that it won't destroy me if more do so).

This is me. This is my life. I don't expect anyone to understand what I'm facing. But here it is for anyone who wants to read it. If you've made it this far, give yourself a pat on the back - you deserve it.

  
  Member Comments About This Blog Post:

RISINGBLUESTAR 5/28/2013 2:35AM

    You never have to apologize for expressing how you feel and sharing what you go through. People who attack anyone for doing that should be absolutely ashamed of themselves. It's not your problem if they want to pretend everyone's life is sunshine and rainbows! Blogs aren't just for entertainment. Their primary purpose is to get frustrations out and be completely honest about struggles. I find the people who are the most honest are the most inspiring. :)

I can only imagine what you go through. The way you described it just sounds horrible and I am betting that is worse than you can even explain. No wonder you have emotional attacks sometimes. It's understandable. If I lived near you, I try to help any way I could. emoticon

Hoping tomorrow brings a better day for you & your body lets up on a bit.
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JAMER123 5/24/2013 12:44AM

    I too, wish there was something to be done with helping you!! Have you ever considered assisted living where there is someone around to help if you need it? I don't know if you would qualify but I am guessing you would. Don't put yourself down. The disease process going on can't be helped. You didn't cause it but you have to live the life. Try hard to keep your chin up & hang in there!! We on this site care about you even though we can't be there physically, to help. Take a look at my blog I posted tonight. It is fitting for you. Hope the day went better than your last night did and hoping you get the sleep you need tonight. Don't ignore your body!! Trust it!!
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MOM2ACAT 5/23/2013 5:31PM

    emoticon Please do not feel that you are not "good enough" for Spark, that is completely untrue! I applaud you for your honesty about your health issues, you are an inspiration to me with all that you have accomplished, despite them. As you know, I have my own health issues, and I know what it takes to get certain things done that come easy to most people.

I wished I lived closer to you too, to help out any way I was able to.

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SHERRYGAYL 5/23/2013 8:12AM

    I want to scold you for not letting me know you were getting into such a state emoticon but instead I will just apologize for not being close enough to run over to your place to help you out emoticon or just to sit there quietly while you vent emoticon . emoticon , sweetie. You deserve better than that. And I do feel bad... helpless, actually. My friend's body is hurting her mind and there's nothing I can do to comfort her! emoticon Just know that you can call or text me anytime. I may not answer right away but it's not because I'm ignoring you. It's probably because I'm asleep emoticon but no matter what I will get back to you as soon as I can. Now go get a fruit roll-up and shape it into a smile before you eat it emoticon That's me sending you a hug emoticon

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