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!
Wednesday, March 14, 2012
Here's my PICC line, which goes into my upper arm and feeds through the vein to my heart. Which means Damon and Stefan Salvatore or the Original Siblings (vampires on The Vampire Diaries) could use this line as a straw. :)=
This is the TPN liquid inside the backpack that will be my tag-along buddy for awhile. It's quite heavy at the begining, and when it's running low then I should be heavier. haha In the spirit of Evwings namng her new red scooter, I'd like to give my backpack a name. I'll also start looking for ways to decorate it. My first instinct is to call it Damon, but I'm wondering if anyone has any other ideas. (Feel free to leave a comment with your idea if you do!)
In the meantime, I had a roller coaster day today. My mother had more issues today. Apparently I'm such an invalid that I'm not allowed to be out of my parent's sight if I'm out of the house. *SCREAM* I'm 30 and being away from me for 30 or 60 seconds isn't going to cause me to die! Then we got home and the nurse who was supposed to help with my TPN (I'm getting training for a few days in a row because there is SO MUCH to do!) had just gotten there. So we rush in and do that, then my mother starts in on me about how I'm such a horrible person. *headdesk* She just wanted to yell and get attention, but I couldn't take it. I was yelling back because I'm so overtired and overwhelmed.
I chose to do better. And better found it's way to me.
I left the house and walked in the yard while my dad finished lunch then he came out to join me. Yes, I was upset and venting a bit, but then I had to take my temperature (have to take it 1 hour after starting a new TPN bag) so I sent him inside to get the thermometer and after that my camp chair. While I waited for the chair I sat on the curb with my backpack at my side and my head hung between my knees. I heard a car pull up slowly then stop in front of me. I looked up and there's a guy I've never seen with the side window rolled down. He asked if I was okay and I told him I was okay just sitting there. He said that when he sees a pretty girl on the side of the road he will definitely stop to make sure she's okay. AWE! I stood up and talked to him through the window for a few minutes and then when a car came up behind him I asked him to pull over and talk to me for a bit. This led to 2 1/2 hours of us talking! 2 of those hours he was squatting down - what does it say when a guy will squat that long (changing which leg was getting the most pressure of course) just to talk to a girl! He was very sweet, incredibly intelligent, pretty cute, and very well spoken. Any guy that can keep up in a conversation with me is an impressive guy! Plus he kept giving me little complements. Eep! I kept reminding him that he had just pulled up to me on the side of the road and we started talking - it was making him blush a bit. Score! We talked about everything from genetics, to history, to the movie Immortals (which we totally got into that converstation), to our families, to an interesting documentary he told me about, to just about everything. There were so many things we talked about that either we had in common or the other was interested in hearing about. After 2 hours of squatting I asked him to move because the sun was setting right behind him and it was hurting my eyes, so I told him he could lean against the tree and stretch his legs. And I didn't want him to leave. hehe When he really needed to go I stood up and asked him to give me a hug for really making my day and helping me feel better. He smiled big and said sure. I had explained I was sick and underweight, but when he hugged me he smiled at me and said I still had some nice curves. *giggle* So I told him that he just earned another because he had totally made my day and helped me feel better after the argument with my parents. I actually just wanted another hug from a cute guy. I'm sneaky.
With a little luck, this won't be the last I see of him. He lives in my city and he had asked if I ever go out in the sun during the summer. He said he might have to drive by a few times and try to catch me in my bikini (his assumption on my swimsuit choice) on my deck. So I stepped up and told him he knows where I live so he can just come knock on the door. Or I could give him my phone number and he can call ahead so I can tell my parents to leave for a little while so we can talk. Yes, I actually took the guts to do this! As unbelievable as that is, I did it! WOOHOO! He took my number then I had him call me so I'd have his. I hope he takes me up on my offer and we spend some more time together. I might even text him if I haven't heard from him in a day or two. I've got a busy few days ahead, so I'll see what happens.
Here's some info for those who are curious: he's 34 (I'm 30), never been married and no kids (bit of a rare find!), has a bachelor's degree in pre-law, has been working with a skydiving company taking videos and packing chutes as he takes care of his ailing mother (lost his father when he was young), and he was an army brat but spent his teen years here in my town. Oh and he gives good hugs.
I'm trying not to get my hopes up here, but I'm hoping that something good comes from this chance encounter. Still, I'm excited.
Thursday, March 08, 2012
I haven't been blogging lately because of all I've been going through. I've gotten down to 113 lbs (at 5'7", this is BAD), have been getting weaker, and I'm constantly exhausted. Even being on more and more medications to try to help with the gastroparesis symptoms and to get my stomach to work better, I just keep getting worse. After about a month of trying to convince my doctors to take another step and put me on TPN (I'm DESPERATE for nutrition) they've finally put it together. I'm getting a PICC line put in tomorrow and someone will come to my house on Monday to set up the TPN. I'm quite nervous about it, but I really need to turn this around.
I've also been "mostly" diagnosed with Ehlers Danlos III, hypermobility type. I say "mostly" because I'm waiting for an appointment to get DNA testing done to rule in or rule out Ehlers Danlos IV, vascular type (the most dangerous type). If this wasn't enough, I'm waiting for an appointment at an autonomic lab (looks like it will be one in Milwaukee) to be tested for POTS (Postural Orthostatic Tachycardia Syndrome).
The worst part about all of this is that both of my parents are now living with me and my mother is the epitome of a loose cannon. She spends so much time being angry and yelling that it has taken a horrible toll on me. My father is at his wits end with her, but he feels it is his duty to take care of her. My sister refuses to deal with her and mostly stands her because she likes being around my father. The family dynamic is such a mess. My mother's negativity just oozes out of her and makes everyone around her unsettled and distraught. As she ages and chooses to keep being unhealthy, her brain deteriorates and any little bump in her life gives her reason to verbally abuse everyone in earshot. A few weeks back we had a family therapy session and afterwards I told her how absolutely terrified I've always been of her. I told her that I've made a choice and now it is her choice as to what relationship we will have, if any. If she chooses to get help, then I will give her some leeway and allow her to be near me. If she chooses to continue as she has, then I can't have her around me because she's damaging not only my mind and my health but my recovery efforts as well. All day today she was flipping out over any little thing; I finally put my foot down and told her if she chooses to act like a child then I choose to be the parent. So I told her to take a time out or I was going to act like her and leave the house crying. When I said it a second time she finally stopped yelling at my father and me and went downstairs for her time out. Thankfully she's been quiet since. I'm the one who's serious ill and no matter how much she claims to want to help, I see that she's so desperate for attention she'll do whatever it takes to get her fix. She might choose to always play the victim, but I choose to be a strong person instead. I'm no longer going to bend to her issues. I am going to be me and if she can't handle it then she can go to her home and leave me alone.
Besides all of this, I'm no longer choosing to be afraid of asking for help. My parents have emailed the Ellen DeGeneres show to ask her to help. I'm also going to be asking on my CaringBridge site for family and friends to ask her for help. I have several sparkfriends on here that know me as well as pretty much anyone, so I'm wondering if anyone here would be willing to help. I'm hoping that with enough emails I'll be able to get her staff's attention and I can get some help I really need. Thus, here's my official ask:
If you have the wish to, please go to Ellen's website at: ellen.warnerbros.com/show/respond/?P
Please start the story with "I'm writing about Sheri in Eagan, MN." I'm hoping that by starting so many emails this way, it will link them together. You can follow it by saying "I know her on SparkPeople.com as 1stateofdenial". Hopefully this will help them find me if they see your email.
Please know that it is your choice to contact Ellen on my behalf (I won't know who does or who doesn't) and my friendship isn't dependent on helping me with this. While I hate to ask for help, I'm making a choice to ask for it because I hope I have done something to help my sparkfriends enough to warrant a short email.
Thank you to my sparkfriends who have been wonderful to me, supporting me through all my health problems. Your kind words and knowing that you are here for me helps push me through the setbacks and the dark times where it feels I'll never get better. I share your stories as proof of the successes of SparkPeople and think of you whenever I need a reminder of how important it is to keep trying. Often my sparkfriends are more like a family to me than my real family. I know I wouldn't still be fighting if it wasn't for all of you. Give yourselves a big hug and know that whenever you need me, I will do my best to be here.
Friday, February 17, 2012
A lot has been going on again, and next week will be a crazy busy week too. I didn't hear from my GI specialist for several days, so I emailed again and said I was desperate. My doctor called me a short time later and submitted 2 different nausea medications (Zofran pill and Sancuso patch) to try to help me to be able to eat again. I'm not sure if it's helping all that great, but it's worth a try. He said if I wasn't doing better by Monday to email again and he would really consider putting me on TPN. I'm eating a little better, but all it takes is one more day of massive stress and/or exhaustion from doing too much and/or any number of things and I'll be right back to ~700 cals/day (half being nothing but simple carbs) like I've been the past few days. I'm down to 114 lbs (at 5'7") and ridiculously weak. Honestly, it really sucks to not have a fully functioning digestive system!
I called for a neurology appointment, but the closest place couldn't get me in until 3/21 (and were really harsh on the phone) but one further away could get me in 3/5. I didn't want to wait until after my genetics appointment on 2/27, and I explained how bad I'm doing. She couldn't get me in earlier... until the next day (yesterday) when she called and said she was able to sneak me into a spot for today! So I had the appointment today and it's not good.
I have decreased nerve sensations down almost my entire left side (hand, arm, leg, foot, and most of my back), among other issues. I have to get an MRI of my head (for the massive headaches I've had for years), neck, and back. I'll also have an EMG done to test the nerve function in my limbs. People keep telling me the EMG will be painful... psh I kinda want the test just so I can say that it's nothing compared to the pain I deal with every day.
So here's what I've got going on through the end of the month:
Mon 20th - if I'm not eating better email GI doc about starting TPN
Tue 21st - therapy appointment w/ my therapist and taking my mother (if she will go) because my mother is crazy and she's making my life worse, not better, lately
Wed 22nd - MRIs for neurologist
Fri 24th - dermatologist for update on the chilblains
Sat/Sun 25-26th - pack and drive to WI to parent's house
Mon 27th - genetics appointment at University of WI
Tue 28th - drive back to MN
Wed 29th - EMG for neurologist and get results from MRIs
If anyone out there things being home on disability is like a long-term vacation, please re-read the above and ask yourself how you would do just that when you can barely get any nutrition and your brain isn't fully functioning.
I am a fighter. I am a survivor. I am more than I or anyone knows. Yet I am weak. I am exhausted. I wonder what's the point of fighting when there isn't much left to fight for. Yet I am here, pushing through every day like a kitty playing at being a steamroller. I am everything and nothing. All I can do is face each day and do my best to do better.
Thank you so much to all the incredible sparkfriends I have. All of you give me strength when I falter and I hope you share in the successes I have (even if there aren't enough of them). Even if I don't always tell each of you what you mean to me, your kind words, goodies, and just general support, please know that all of you have meant everything and I couldn't be who I am right now without you.
Tuesday, February 14, 2012
My health is still deteriorating and it is disheartening. I haven't heard from my GI's office and my primary doctor said she can't order TPN so if I'm feeling this bad I should be going to the ER. Both of my short term disability policies are dragging their feet. I'm so frustrated!
My primary did set up the referral so I can go to the neurologist and she approved for me to take twice as much of the nerve pain blocker at night to try to help me sleep for more than 2-4 hours at a time. She said if I need to talk to her any more about this I should make an appointment.
I spent part of the morning having my mother yelling at me, arguing about how all drug companies are completely evil and should be forced to never make any profits because all they do is kill people. Then she turned it on me when I tried to explain the realities of economics and businesses. In the last 2 years I've finally realized why I see so much 'black OR white' or 'good OR evil' in the world instead of the shades of gray - it's because that's how she is. Everyone and everything is either perfect or evil, never in between or both at once. I've been working on correcting that in myself, but when she pulls this kind of stuff it is extra hard on me. Since I was trying to explain the shades of gray to her, it made me evil in her eyes and thus I was attacking her and needed to be attacked back. Just the thing I don't need!
Then this afternoon my parents took me out to look at new couches, as the loveseat I'm all but living on was in bad shape when I bought it at a garage sale in mid 2004. I can't afford much, but President's Day sales are the best time for buying furniture, so hopefully I can get something decent for relatively cheap. While we were out, I was really exhausted so my father was helping me, but while my mother wanted to hurry she got distracted instead of trying to find someone to help us. My father and I both tried to get her to find a salesperson, but she said we 'barked' at her and started throwing a temper tantrum in the store. The rest of the time she wanted to get back at us so she kept being angry and bitter the rest of the time. Now we're home and the tension is so thick you could cut it with a pin drop. Just one word to her and she will start screaming about how we hate her and want her to die and then that we're horrible people. Is there any question why I believe she's on the road to dementia? Again, this is exactly what I don't need!
I want to ask someone to make something for me to eat (since I've barely had anything again today and any hunger should be addressed), but I don't have the energy to run out of the house when my mother starts screaming and my father is trying to take a nap. If I try to do it myself my mother will start screaming that I didn't ask her. I can't win no matter what I do.
All this after I planned a Valentine's Day outing/date for my parent's yesterday, where they got a cheap movie and dinner out together while I stayed home by myself.
It's a good thing I don't actually care about Valentine's Day (I've been single for almost 12 years, since I broke up with my last boyfriend right after I turned 19) otherwise this would be an extra bummer. Instead:
To all my wonderful sparkfriends, today is about telling people you care about them, so I hope all of you have treated yourself to a little romance and/or a little self-caring with something nice - preferably not something edible. And remember that the support you all show me means more to me than I could ever put into words. So please forgive the understatement when I say THANK YOU!
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