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.
Sunday, March 18, 2012
Imagine being told that one little mistake on your part could kill you in a few hours. Now imagine that the mistake can come anywhere within a long, somewhat complicated process and you must do that process every day for a few months. So pay attention and get it right, huh? And what happens when you factor in the fact that your brain is not functioning properly? Just to fan the fire, I'm still shook up from what happened with a nurse a few days ago and while taking a shower my arm (around the PICC line) got wet and damaged the dressing and you can see why I became completely overwhelmed yesterday and couldn't stop crying. Of course, having to deal with 3 terrible and highly misunderstood medical conditions, fight short term disability companies and my insurance company, all while dealing with my crazy mother, makes me wonder some days how I have the strength to even turn my head in the morning. (Which in reality is almost impossible for me to do without wanting to throw up due to my POTS.)
I wish I had someone in my life who could just wrap their arms around me, tell me they will take care of me, and more importantly didn't have a tendency to make my life more difficult than it already is.
On Weds the nurse came over and it was not what I was hoping for. She had to draw blood, change the dressing on the PICC line, and watch me put my bag and lines together to make sure I wouldn't mess anything up. Well, due to my conditions, more than 3 tubes of blood makes me weak, dizzy, and nearly black out. She was not at all gentle in flushing out the PICC line (which puts the fluids almost right into my heart), then drew out the blood very quickly and wasted over a tubes worth, and then she wasn't gentle when taking off the dressing or cleaning my arm. The alcohol was repeatedly squeezed into the hole where the line goes into my arm and it burned all the way across to the other side of my body. Between all of that my body gave up; my blood pressure dropped and I said I was going down. The nurse didn't believe me but my parents did and they got me on the floor. After a few seconds I could talk again and after a few minutes I got up and sat back at the table. By then the nurse was completely freaked out and just wanted to finish everything herself. Not a good day, huh? My mother flipped out for days about it. We've made our concerns known and asked for her not to come back. If she's this overwhelmed by me, what would she do if something really went wrong?
I also got up the guts to text THE GUY. Shocker! I totally don't get it - I'm usually annoyed by most guys, but this guy I keep thinking about. Basically I thanked him for spending those few hours with me, he said no problem, and that's about it. Not what I was hoping for, but it's something.
Thurs a different nurse came by, helped make sure I could set up my lines properly, and was very sweet to listen and learn about my conditions. She helped make me feel much more comfortable and listened to.
On Friday I got the phone call that my short term disability FINALLY came through. I haven't gotten any income in over a month and a half. This won't be enough to do much, but maybe instead of just 1 month before I default on all my bills it will be 2 or 3. I also talked to my cell phone company and by signing up with them for another year (I've been with them for almost 9 years) they're giving me 1 month free and a bank of 500 minutes to use over the next year if I go over my minutes any month. Darn good deal I think, and it comes at a great time with all of the phone calls I have to make lately (my daytime minutes have quadrupled).
Then I screwed up. I wanted a shower (I'm only showering every 2-3 days, when I used to shower every day) and I take really long showers. I finally realized why for my entire life I've liked taking long, hot showers: it dulls the hypersensitivity in my head and body, so my pain is lessened and I don't have to hear everything I hear (the other day I heard a dog whistle on TV). So after unhooking the TPN my dad wrapped up my arm and I took about an hour shower (normal for me). Unfortunately, the tape failed and when I got out my arm was soaked. I tried to dry it, only to find the dressing was soaked through and when trying to get the soaked tape off from around it the dressing was torn. I started freaking. My mother called to get another nurse out to change the dressing and they wanted my new bag hooked up because it would take a few hours to get someone here. I was upset so when I tried to get the bag ready, I screwed up and forgot to alcohol off a vitamin vial before sticking in the needle. It was caught before I ruined the whole bag, but it was the last straw for my brain. All the frustrations, pain, terror, anger, disappointment, exhaustion, etc came pouring out and I couldn't stop crying. My parents took care of the bag then I came over and they hooked me up. It made me feel like such a failure to have all of this happen - I'm supposed to be able to do this myself! I need to know exactly what I'm doing. I need to do this right every single time. Heck, with my hypermobility I can even hook up my line in a way no one expected (I can touch my bicep with my hand on the same arm).
After that was settled I tried to settle myself. My mother left to go home for 2-3 weeks (hopefully that will help me!) and the nurse came to change the dressing. She is really sweet - she saw how upset I was and gave me a hug then drew a smiley face on the new dressing. I'm still freaked about taking another shower, but I'll have to soon enough.
Just to throw flame to the fire, I texted THE GUY again, wondering if he would be able to come over for a little while this weekend to hang out since it is so beautiful outside. He said he'd have to play it by ear so I told him that's fine but he needs to give me an hour or two heads up in case I was in the shower or something. haha Then I said that as much as I liked him kneeling at my feet the other day I don't have another outside chair so he can bring his own if he'd like. I'm doing what I can to peak his attention, at least until I can figure out what's so charming about him for me. Maybe I'll be lucky enough that he'll be able to come by for a little while on Sunday.
I'm sure you can see why I'm so desperate to get off the roller coaster that is my life. Honestly, I wish I could have a few days where I could just relax and do nothing of importance. I can't take this insanity much longerr!
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