Monday, April 16, 2012
I have the most extreme amount of exhaustion going on right now. A large portion of it is emotional exhaustion. I've spent so much of my emotional energy on fighting to be positive while people around me in person are dragging me backwards with the most defiant negativity. They finally wore me down.
Things started going downhill a week and a half ago, on Thursday. After one of the home nurses was here to change the dressing on my PICC and used an adhesive remover, the skin under the dressing started looking red and itching. On Saturday another nurse came out to take off the dressing and clean my arm. We were hoping it was just an allergic reaction to the adhesive remover and that removing the clear dressing and putting on gauze would allow it to clear up quickly. Then another nurse came on on Monday to replace the dressing. But the redness had grown into what appeared to be a massive group of hives. It was itching uncontrollably. She chose to put a new gauze dressing on. I asked her 3 times to put the paper drop cloth under my arm to help keep the area sterile, since I have a cat and his hair is everywhere. She told me it would be fine as long as I didn't move.
Well, Tuesday morning I woke up with chest pains and yellow pus had soaked through the gauze. I was feeling terrible but I was hoping I had slept on the arm wrong and that's what caused the chest pain. I called the nurse line and talked to them about it. Of course, they were worried and said I should probably head to the ER, but since I was thinking the chest pain was from laying on the arm wrong during the night, they asked if I wanted a nurse to come out that day. I waited a few hours to make a decision: go to the ER. I was worried if the PICC had shifted in my chest and if that had caused the pain.
They did an EKG and it looked okay but when taking blood they found a protein marker in my blood was the tiniest bit elevated, which could signal a tiny heart attack. By the next morning it was fine, so they don't know what caused it to be elevated. The doctors were also really worried by the look of my arm, since the affected area just kept getting bigger. Some doctors were saying it seemed more like an allergic reaction while others said it looked like an infection. Some said it was probably a combination. Add into it clear fluid-filled blisters on my hands and blood-filled blisters on my feet (which a dermatologist biopsied on Monday - on Thursday they said it appeared to be a sympathetic response to everything happening on my arm) and you can see that this was becoming a dangerous situation either way, even though I had no fever. (I don't get a fever when I have infections - my immune system hasn't been working well in years.) Since there was a good chance my arm was infected and the PICC line goes from the arm right to the heart they couldn't take a chance of having the infection spread into my blood. They started me on IV antibiotics and admitted me. (On a side note, my ER doctor was H.O.T!)
They ended up pulling the PICC and couldn't get another one into my left arm. A year and a half ago a phlebologist (person who draws blood) gave me nerve damage in my left arm (couldn't straighten it for 8 weeks) and apparently the nerves 'adjusted' because two people tried several times to get into the vein and just kept hitting nerves. They finally had to give up. They're hoping that my right arm will clear up in a few weeks and they can put a new one in - my GI doctor wasn't ready to give me a G/J tube just yet. This is difficult for me to hear because I'm once again losing weight quickly.
While in the hospital my veins kept blowing from the IV antibiotics. They eventually couldn't get any more veins after 2 IVs and multiple blood draws and had to call in an anesthesiologist to get into a vein in my wrist. That one blew just before I was discharged. My arms are all bruised and red from the infection. Also the blisters on my hands and feet continued to itch uncontrollably, and even worsen, the whole time I was in there, which probably means an allergic reaction to a medication I was taking. So 3 of my medications have been stopped until I can get to a doctor who can figure out which I was allergic to.
I was sent home from the hospital on Friday with a large dose of antibiotics, benadryl, and benadryl cream - because of my gastroparesis meds take a long time to take effect (often 4+ hours) so I need to put on the cream if anything starts itching because the pills take forever to work. Before I left my father insisted I talk with a social worker. Then, just like he talked over me to some of the doctors (and telling them wrong information), he proceeded to tell the social worker that I'll probably not be eligible for anything. WTH?!?! I finally looked at her and told her my father was being very negative about it and thinks it's impossible for me to get help from anyone. When she left for a few minutes to print out some paperwork I pointed out to my father that what he told her equated to saying I was not that sick and didn't deserve help. He said he's just so scared for me. THEN ASK FOR HELP INSTEAD OF TALKING SOMEONE OUT OF HELPING ME! When I finally got him to stop and told her what's really going on then she suddenly had several more ideas of how I can be helped by the county. Oh and him having a yelling match with my mother over the phone two feet from the head of my hospital bed while I had a massive migrane headache was absolutely horrible.
My father has sucked the positivity and hope out of me. He spends all of his time telling me things I should be doing while he sits and plays a stupid game for hours and hours on end. Even when I was in the hospital he took my computer and spent hours on it. I'm completely frustrated with him. Even when I got out of the hospital I came home and within just 3 hours I was doing laundry because he can't seem to look at the washer and figure out how to use it! (He's done laundry before, he's just seriously lazy.) Then he wanted to put his in with mine so I'd do his laundry on top of mine! Plus he can't seem to figure out how to cook anything, so he is asking me where to find things, how to use the stove/oven, etc. He's lived here for 4 months and can't seem to figure out how to do this stuff without making me help him. He's supposed to be here taking care of me, but I feel like having him here is actually much worse than if I was doing it myself. And the fact that he plays that stupid game all day then tells me more and more and more things I should be doing is ridiculous. He's not scared for me, he's freaking lazy and wants me to take care of him.
Since Friday afternoon I've been feeling worse. Being surrounded by nothing but his severe negativity, being back to barely being able to get nutrition, and I'm being pumped full of heavy antibiotics and benadryl. I have heart palpitations that are so bad in my ears it sounds like someone is banging on the walls of my house. I'm having a hard time sleeping, walking, or even sitting up for a few hours. The extreme fatigue/exhaustion is making it feel like just breathing is a serious chore. The celulitis (skin infection on my arm) is spreading across my chest, even as it's attempting to clear up. Add to that the fear of everything that's happening and knowing my family is not giving me the emotional support I need, nor are they helping to figure out the processes I need to get on disability and figure out what services can be offered to a person with several severe conditions making it impossible to do much of anything. Instead, I have to fight them on everything and fight for everything that is supposed to be offered to me.
I've spent so much time fighting to be positive and now I feel absolutely beaten down. I no longer have a job to attempt to go back to, I'm probably going to lose my house, and battling to receive disability support is making me feel like I'm going to lose everything I've ever worked for. I'm 30 yo and I feel like my life is being flushed down the toilet.
Sunday, April 08, 2012
In my last blog I didn't mention that I found out since I can't return to work this Thursday (the end of my FMLA), I'm out of a job. Can't do anything about it, but it's terribly scary. What in the heck reason do I have to get well enough to work? When I say I lost my job because I was sick no job will hire me. All of this work trying to get my doctor to give me 3 more months in the hopes that I'll go back to work is pointless now.
Yesterday I got the results of the Ehlers Danlos testing - it is not type IV, vascular type, which is the deadly type. So it falls back to type III, hypermobile type. Still sucks for my joints and means I'll have joint pain and problems the rest of my life.
The sores on my foot and the bumps on my hands have spread to the other foot and all around the site of my PICC line. They are either blood filled (feet) or clear fluid filled (hands/arm) and itch ridiculously bad. It dawned on me the problem with my foot began after I started taking the Domperidone and worsened when the dosage was doubled. It got better when my prescription ran low because I forgot to order the refill on time then got much worse when I started writing down when I took it to make sure I took it 4x/day. My home nurse came out and said she believes the arm is a reaction to the dressing but the rest of it does look like it could be a reaction. I emailed my doctor Saturday at about 2am so he hasn't had a chance to respond, but she told me to stop taking it for a few days. My foot isn't itching nearly so bad but my hands keep getting worse. My home nurse removed the dressing on my arm and covered it with gauze instead so it has a chance to try to heal, then she'll be back out tomorrow afternoon to put a hypoallergenic dressing on it. Hopefully that will help so I don't want to tear my arm off to stop what feels like bugs running marathons around my arm.
The patient advocate I talked to told me about a highly specialized doctor that should help with my long term disablilty and social security claims. When I told my father about it he told me if the only one available in MN is at mayo then I'd 'better suck it up' and deal with it. He really chewed on me about it and basically blamed it on me that if I had just been willing to go to Mayo then I'd already have the POTS diagnosis instead of making everyone's life more difficult by going to Milwaukee. I had to explain to him they were so convinced that I was faking it that they were sending me to psychiatric doctors for some medications and they would probably have locked me up if I had refused them (as I definitely would've considering doctors have already overdosed me on that stuff before because it does more harm than good). They did lock up someone I knew! He then chose to blame me for making the doctors do this stuff to me. So sure, he might need to 'cope' by playing a video game, but playing it for 90% his time while awake and in my house, but he's definitely not helping me cope whatsoever! It really makes me want to throw him out of my house and go back to doing everything on my own. Unfortunately, I can't do that anymore. Oh, and I didn't get to see my sis and BIL either. My family treats me like crap and makes so much worse, most of my IRL friends have thrown me away, and I can no longer support myself (unless I win the lottery)... Remind me why I'm fighting so hard again?
Tomorrow I have an appointment with my therapist (only way to get an appointment in less than 3 weeks is to drive an extra 20+ minutes away, but oh well) then my nurse comes back out. Weds I see my primary doctor to get help filling out paperwork. Thurs my nurse comes out again for my weekly blood draw for my TPN. Fri I go back to the dermatologist. In between I get to make phone calls and try not to tear my skin open from the itching.
Saturday, April 07, 2012
I'm feeling hurt. My sister and brother in law are in town to visit the Mall of America and don't want to see me. They're literally 10 minutes away, I rarely see them, they've never been to my house (I've owned it 2 1/2 years), and they're making excuses to not see me. This is really hurtful. My sister and I have never really gotten along, but this is beyond. Apparently they feel it's too dangerous to be near me when they have bronchitis. Yet his friend is bringing his wife to spend the day with them and it's not too dangerous when they could take the sickness back to their baby. I even offered that we could go to a park for a picnic lunch so as long as they don't breathe or cough on me I'll be fine, but that's still not a good idea. Needless to say, I think I'm too sick to be a sister anymore. So I've offered to just let my dad go hang out with them, but my dad doesn't want to leave me alone. There's a stinking good reason I just want to scream.
At least things went a little better this morning. I found a patient advocacy charity and left a voicemail last night asking for help. She called this morning and based on what I told her of my story she feels I'm definitely more than qualified to get long term disability and even social security disability. If I'm denied LTD she'll help me appeal. If I'm denied SSD she'll help me find a lawyer. She gave me many good tips and I was feeling better about the process. Then later I found out since I won't be able to return to work by Thursday next week I am losing my job. I can reapply in the future if I start feeling better, but now LTD and SSD are so much more important.
Yesterday I went to the dermatologist again. He doesn't think these are chilblains, instead he thinks I'm having an allergic reaction and the tiny blisters all over my hands are a sympathetic response to what's happening with my foot. I'm not convinced. The steroid cream he gave me to try to stop the reaction is not helping - in fact right after I put it on it seems worse. To top it off, the nurse came out yesterday to change my PICC dressing and when he removed the old one my arm looked especially annoyed. Soon after it got much worse. The whole area under the dressing is brownish red, swollen, and full of the same tiny blisters as on my hands, with several of them having been torn open. It itches and burns also. I have to leave it alone so I don't accidentally damage the area where the PICC goes into my arm. I'm worried about what's going on with this. I can't put any kind of cream under the PICC dressing, so I don't know how to stop it from getting worse. Another nurse is coming out tomorrow to put on a hypoallergenic dressing, but there's got to be something causing this! Plus, if this is happening on my skin, what the heck is going on under my skin?!?!
I'm still feeling like a worthless waste of space lately. My father is getting really snippy and jerkish to me lately (so much as saying that I should just 'suck it up' and go to Mayo... I had to explain to him if I do that they will probably lock me in a psychiatric ward because they're absolutely convinced I'm faking everything - he didn't seem to care that they could do that and refuse any and all treatment while I'm in there). He's completely wearing me down because he doesn't want to help in dealing with all these different problems I'm fighting and instead wants to get angry at me while spending his days playing a stupid computer game. I wish I could tell him to go home, but it's not exactly safe for me to drive and I shouldn't be alone. I absolutely hate not being in control of my life, and it's even more degrading that the person who is supposed to take care of me is upset at me. It makes me hate all that I am.
I'm still waiting for 1 of 2 friends who are supposed to be designing button pins for me to complete it and send it to me. I know they're not in a hurry, but I was hoping to get this going faster than this.
I have to wonder if I'm ever going to get anywhere unless I'm completely doing it all myself. It seems like those around me are just sick of me and don't want to deal with the reality of me.
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.
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