Thursday, April 05, 2012
Today was just a horrible day. My insurance company is really going out of their way to not have to cover a medication - in doing so it could mean surgery or worse. My long term disability company must be trying to kill me because they are being rude and acting like there's no way I could have conditions that are rare or misunderstood. I think if I was in a coma they'd probably fight to not pay me. I have to have multiple doctors fill out the same form because of all the conditions I have and no one doctor can understand them all! I tried to call my therapist's office and no one was answering the phone! I sat on hold for over 5 minutes, I tried calling a few more times, and then I just called my therapist directly to ask her a question. Then I called the front desk again and still no one was picking up the phone! Work is waiting for me to talk to them about me coming back; I was supposed to be back on 4/12 but my primary doctor is in agreement I should be out at least 3 more months. Hopefully she will have a letter to send to work in the morning. The chilblains on my foot are back (I barely was able to sleep last night because of them) and even worse than before (the entire bottom sides of 4 of the toes on my left foot and down onto my foot about an inch is full of chilblains blisters, some of which have broken and are oozing). Now I have tiny blisters also breaking out all along the bottom and sides of my foot and all around my hands and fingers. They itch like crazy and are also pretty painful. This afternoon I literally was counting them as more and more were popping up, about 1 every 5 minutes for about an hour. Then I went to take a shower and my father is horrible about wrapping the tape properly, so just a few minutes into my shower and I already had a teaspoon of water inside the plastic wrap around my PICC dressing. I couldn't handle one more thing so I shut off the water, tore off the wrap, and had a breakdown. I tossed the shower chair out, hit the shampoo bottles to send them flying, screamed at my father to leave me alone, then I filled the tub 1/3rd full and sat there sobbing while my abdomen screamed in pain, my foot was burning, my head was swimming with awful thoughts, and my back and butt were aching. After at least a half hour (and a call to set up an appointment with my therapist next week) I couldn't take it anymore. I called a friend who lives on the west coast just about when she was getting out of work and I talked to her for awhile. She really helped get me through the worst of it, then my phone started dying so I let her go. I had my dad bring down another wrap for my arm but I used twist ties this time instead of tape (my skin had dried, but I didn't want to go wrong again). I did what I could to finish the shower with as little water as possible getting at the PICC dressing (just a few drops this time), then came upstairs. I was an hour and a half late getting my new TPN bag started, but by then I didn't care.
I don't understand why everything has to be so hard for me. Why can't anything seem to go well without me fighting like heck for it, just to have it go to crap again soon after? Why is it that I have to be so rare and unique that the doctors can't seem to figure me out, can't cure me, and these insurance companies feel they can treat me like I'm worthless and unable to receive help? Why can't I be a normal person who can eat, walk, have fun, and have a guy love me?
Every night when I'm trying to get ready to bed these are the questions in my head. I wonder what is the point in continuously fighting when I can never seem to get ahead? I find myself saying "I hate..." and I list everything about my life that I can't stand, just to find the list so long that I lose my place and realize that there isn't much in my life right now that anyone could like.
Tomorrow morning I have an urgent appointment with another dermatologist (mine is out on vacation this week) to try to figure out why the chilblains (or whatever these little blisters are) are spreading so bad. Then the nurse is coming in the afternoon to change the dressing on my arm. This weekend my sister, BIL, and BIL's sister (maybe her boyfriend too) are coming to the area to be tourists. I'm hoping I'll get to see them, but I have a feeling they won't particularly want to see me. When I was in town by them for a night when I went to WI they came to visit - to talk to my father not me. Trying to hug them goodbye was like they were mannequins - they didn't seem to care. They were there because they hadn't been around my father in 2 1/2 months. Why should I expect anything but that?
I'm sorry that I'm so negative in this blog. I'm a complete mess today and I know no one out there can fix anything for me, just like no one around me can fix anything or do anything to help me. I'm the only one who can ever do anything to help myself or get anything done in my life. As much as I want to give up and give in, I know I can't. This is my life and all I can do is fight until my body fails.
Tuesday, April 03, 2012
Here is the new pj set I bought the other day. I was looking for cheap, soft, and fits without falling off. (They're size small from walmart and still a little big on me, especially the pants.) It's pretty ironic that this is what I ended up with.
For those who don't know me, I have a partially paralyzed digestive system so 2/3rds of my daily calories is delivered through IV nutrition straight into my bloodstream. If I tried to eat a burger and fries I'd be horribly sick and in massive pain for days. Thus the irony of me wearing these PJs is pretty hilarious to me. haha
Wednesday, March 28, 2012
The bad news is it is wholly because of the TPN. My ability to eat and drink without pain keeps falling. I've gained about 6-7 lbs, but it's because of the 1577 calories per bag (right now it takes 24 hours to get in a bag, so if I pause it for a shower then I don't get the full calories). I'm only getting about 700-900 cals per mouth each day and about 3-4 cups of water. The drop in food eaten has helped the pain, but I have hypersensitivity in my body so even after 3 weeks my arm and armpit are still hurting - at least the pain where the PICC ends just outside of my heart isn't as bad as it was at first. I'm sick of my body not working.
Of course I'm even more sick of constantly dealing with the insurance companies and the doctors and even my family to get what I need to live as best I can. It seems I might not be heading back to work next month. Even with the TPN I'm constantly exhausted and in pain. Just sitting up for a short time makes everything unbearable.
Now I have to figure out my money situation. My long term disability company is already trying to get out of covering it. I need to call and ask about social security disability, but my father figured out months ago that he doubts I'll get it. I wish my family would support me in what I need! I wish I knew why they believe I don't deserve all this medical help or societal help (like social security), and they're both so insistent about never asking for help from any friends or family or setting up any kind of donation fund for people in the community to help. I want to believe people will help me, but I can't deal with every bit of this myself.
Yesterday was my genetics appointment. They did another family history then took blood (thankfully from the PICC line so no extra pain and bruising) to test for the Ehlers Danlos. Just like the the doctor at the University of Wisconsin, they don't believe I have type IV, the vascular type, which is incredibly dangerous. We're currently working under the assumption that I'm type III, hypermobility type, or some cross of different types. Yet with all of my medical issues we need to know for sure. It will take a month to get the DNA results.
After the appointment I got my dad to take me to a few places to sell my guitar. I've had this acoustic guitar (with gig bag, electronic tuner, and a few accessories) since 2003 where I bought it at a pawn shop in Kansas while visiting friends. I wanted to learn to play but never got past learning a few chords. So I've had it all these years just taking up space. Unfortunately one place wouldn't take it, another offered only $20, and the last I was willing to take $50 just so I could get rid of it and stop driving around or worry about posting it online. I'm sad to have it gone, but it's a little extra money (that will be used quickly) and one less thing to worry about in my house. I also ended up basically guilting an ex into helping me. He's the GM at the place that wouldn't take my guitar. He had just left for lunch when I got there, so I stood around outside for 15 minutes in 50-60 mph winds waiting for him. He was shocked to see me (since I don't even want to be friends with him anymore) but I was there to call in a favor after how badly he treated me. He sent me to the place where I sold it. I feel bad somewhat using him for information, but oh well. It's weird that he's gained a lot of weight and I've lost a lot.
I'm still racking my brain to figure out how to create a button design (see my buttons and blood bags blog). I still need to email the Ellen show (I know I have been talking about it for months but every time I sit down to write it I can't figure out what to say. I keep questioning WHY should she help me? At least I got my taxes done on Monday and I heard back from a doctor's office that dropped what I owed by over 80% (not much considering the bill was only $160). I'm still waiting for Mayo to decide what they'll cut back on my bill. Plus my current health insurance plan started on 1/1 and as of over a week ago I had already met my out of pocket for the year. Now if only insurance would cover my PPI!
I've had a raging headache since this afternoon (a common occurrence for me - possibly from the suspected POTS that I'm seeing a doctor about in May) so I'm going to end this here. I'm heading into the shower then hoping to get some sleep before another long day tomorrow. I'm spending the morning on the phone, other than my home nurse is coming to change my PICC dressing (my skin is HATING this dressing BTW!). Then in the afternoon I'm seeing my primary doctor for updates then heading to walmart or target to get new pjs. (Big pj shirts bother my PICC site, long sleeves don't fit over it well, and most of my PJ pants are falling off me, so I need new ones.) After that it's back home for news and Vampire Diaries.
Saturday, March 24, 2012
Found out in a back and forth text session with THE GUY yesterday that he has a girlfriend, though not one he's currently too fond of. He thinks she's stupid and ditzy. Though that was probably his upset at the rain and her not wanting or unable to help him work on his camper that's torn apart to fix leaks in the roof. I wouldn't want them to break up anyways, because the last thing I want is to catch a guy on a rebound out of a relationship.
Yes, I'm bummed. He's one of the most intelligent guys I've come across in my life (at least who showed any interest in me) and it was exciting to think about the possibilities. Yet I'm not sure now is the time for me to be in a relationship anyways. So I'll live. I always have my new best friend backpack and Vampire Diaries, right?
I should add that I still want to be his friend. In the meantime, I'm reminding myself how important it is to believe in myself and not feel down because some guy who was extra nice to me has a girlfriend. That has nothing to do with me. The fact that he was nice, sat talking to me for hours, and chose to exchange phone numbers to be friends IS about me. So I'm happy to be his friend, because we all know friends are great things to have when you're not doing well.
Wednesday, March 21, 2012
Are any of my sparkfriends artistically inclined? Have any of you ever designed an image to be used in raising funds?
In trying to find some buttons, patches, etc that I can use to 'dress up' my TPN backpack I came across www.cafepress.com/ where you can make your own items to sell. I'm considering the possibility of making some buttons to sell to raise money to go towards my expenses. Unfortunately, I don't have an artistic eye and I definitely can't do art on a computer. I also don't know about how to get them out there to sell (except to sell them to family/friends and/or put them onto my backpack and see if I can get people's attention for them that way). I'm thinking using one of the two phrases I've been using a lot lately:
Every day is a chance to do a little better (the name of the sparkteam I started a few months back)
Forgive yesterday, hope for tomorrow, do better today
Both of these have been helping me lately, and I enjoy sharing both with others in hopes that it will help them. Having these on my backpack will give me more reason to share the positive thoughts with others.
Also, I was wandering on another website I like, Think Geek, and found something that I kind of want to get: www.thinkgeek.com/caffeine/drinks/c6
c9/ - can you imagine the laugh I'd get out of my nurses if they came to my house to draw blood and I'm sucking on this? haha Apparently it's resealable so I'd hope it is somehow refillable. The other place I'd like to take it is on a trip to Covington, GA for a Vampire Diaries tour (still hoping I'll be healthy enough to make it there this fall)! Could you imagine walking around the town or near the set at night drinking out of this? It would be hilarious (to me)!
Lastly, I called THE GUY today and got voicemail (which he hasn't set up to say his name??). I left a message asking about us getting together sometime soon for a movie or something. I put myself out there farther than I ever have in my life so now it's up to him.
Get An Email Alert Each Time 1STATEOFDENIAL Posts