Thursday, May 10, 2012
Well, the PICC was placed on Monday and it's been a nightmare since. The first night I got less than an hour of sleep before I had to be on the transport at 6:30 in the morning to go to 2 doctor appointments that weren't worth it. The 2nd I couldn't even have because COBRA wasn't kicking in and the only way to see the doctor was to pay a few hundred dollars out of pocket then attempt to get COBRA to refund me. I'm broke so I couldn't. Thus I had to call the transport and get them to pick me up early. I cried so much through all of this. I talked to my customer service guy at my insurance company and he was finally able to get the COBRA straightened out for me... but it was after I had already been home a few hours. In the meantime the home nurse came out (unfortunately the same one that broke sterile protocol and got cat hair next to my PICC and caused the infection to blow up in my arm) to do a refresher course in hooking up the TPN. It's interesting how she was not following what I had been taught by other nurses, including she mixed my bag in a way that would cause air bubbles and told me to do it that way! Um, NO! So I'm thinking about asking that she not come back. But my favorite home nurse is coming out tomorrow to change the dressing around the PICC (definitely needed as I bled a bunch as I was holding myself up in the transport on the way from the hospital and again during the transports yesterday) and to draw blood. I look forward to seeing her again!
Then last night I tried to go to sleep around 11:30, but couldn't fall asleep. I think I had a little too much cheese with dinner, as I was holding down vomit for hours. I tried several medications my doctor has given me in attempts to fall asleep, but nothing worked. Finally around 5 am during a trip to the bathroom (TPN is causes frequent bathroom trips for me) just as I walked in my stomach started vomiting uncontrollably. Normally I just feel horribly sick and in severe pain instead of vomiting, but apparently it was just too much to handle this time combined with the last medication I took which tastes like death. It was around 8 hours after I had eaten and even without turning the lights on I could see hunks of food. Oh the joys of GP! It wasn't much - only a small portion of my dinner - but getting it out allowed me to FINALLY sleep about 5:30 am. I took several phone calls during the day before finally waking up at about 3 pm... only to realize I was supposed to change my bag in an hour and I hadn't gotten it out yet! (Should be out 6-8 hours to warm up before hooking it up.) So when the one bag ended I took a shower then hooked it up. It had warmed up for about 3 hours by then, so it wasn't going to be too bad.
All this blew my day of course, and I didn't get to make phone calls I should've made. So tomorrow I'm hoping to make a few phone calls, go to a movie (I just want to get out of the house for something other than doctor appointments!), then be back just before the nurse comes.
I know part of why I haven't been able to sleep is that I've been having chest pain from the PICC since it was placed on Monday. With my hypersensitivity, any movement of the PICC in the vein sends my body into a frenzy. So as I lie in bed and breathe, it slides it against the vein walls and my heart just freaks out and the chest pain jumps too. Nothing they'll be able to do, as it is placed correctly and they can't fix the hypersensitivity (of course some doctors tell me it's not possible - jerks) or the dysautonomia reactions to the hypersensitivity. So I just have to live with it for a month or two while I try to put the weight back on.
Thursday, May 03, 2012
Well, I'm getting back on TPN next week. Monday they're putting the PICC back in. So I've got an appt to get a massage tomorrow. I'm also going to be taking some nice long showers before my appt on Mon because once the PICC is in I'll be back to few showers and nightmare problems with trying to get clean. Now that summer is nearing I'm going to be sweating like crazy whenever outside so let's hope my A/C doesn't go out - otherwise I'll certainly have more problems and have to have it pulled yet again!
Tues I did an appeal over the phone with my insurance company to try to get them to approve payment for the PPI I should be on. Their contract states they'll only pay for a PPI if you're under 12 or on a feeding tube. I was told that a PICC line counts as a feeding tube. Then I was told that when you're on a PICC you're not eating so you don't need a PPI. Well, I'm still eating a few hundred calories by mouth each day while on a feeding tube, so I called them out on attempting to break their contract. This was on top of making a pretty decent case for how desperately I need this medication. After about 15 minutes of non-stop talking I asked them to please reconsider and honor the contract, then asked if they had questions. What I heard was "Wow!" and "You really know what you're talking about!" so I'm hoping they will choose to give it to me.
In addition to getting the PICC placed next week, I've also got appointments with a Physiatrist (physical medicine doctor), my Dermatologist (the chilblains are trying to come back), and my therapist. The following week is a trip to Philly for my GI specialist and the week after is a trip to Milwaukee for testing for Dysautonomia. Such a busy month!
Lastly, I just want to share something nice that happened for me today. I currently live in the Twin Cities metro of MN, but I grew up in a small town in WI, where my parents and sister/BIL still live. The Lions and Lioness clubs there put on a brat and hot dog sale during lunch today as a fundraiser for a guy who has cancer but no insurance and for me, with the profits to be split in half. Some retirees even offered to drive food to the surrounding towns for places like the nearby military base (where my father and I used to work) and the school where my sister teaches, as well as nearby businesses. Hopefully it raised some decent money for this other guy and for me. They're also planning on a silent auction and additional fundraiser in June or July just for me. It's humbling to have people help like this. Being a small town there isn't a lot of people and few have money to throw around, but they also try to help each other. My dad was also telling me about the people who he's talked to since he's been back home and how some people are choosing to make anonymous donations or finding ways to give to my parents and me. I'm hoping it will help get me through a month or two, then with a little luck hopefully my long term disability will kick in.
Wednesday, April 25, 2012
I know I said months ago I wanted to ask Ellen for help. Unfortunately, every time I tried to sit down and write something I completely blanked on what I wanted to say. Yesterday when in the shower my mind broke the wall down and I came up with some ideas about what I wanted to say. So I stayed up into the early morning last night writing it out, changing it, adjusting it, adding and deleting, and I finally got it written. After a small change today I sent it about an hour ago. This is what I sent her:
I’m a 30 year old woman with 3 severe medical conditions: gastroparesis (partially paralyzed digestive system), Ehlers Danlos (genetic joint condition), and suspected dysautonomia (autonomic nervous system problem). I've been getting worse for the past few years; now the severity of my symptoms is preventing me from living the active life I once had. Yet through this journey I've found that being a positive person and inspiring others to make the best of life has helped brighten my days. There’s much I wish I could do to help others, but until I have the capability of volunteering again I am focusing on living by 2 mottos: “Every day is a chance to do a little better” and “Forgive yesterday, hope for tomorrow, do better today”. Just because I can’t be perfect doesn't mean I can’t do better! Your ability to share kindness and generosity has helped me smile and enjoy each day for the past 2 years and I’m grateful for that. I hope you'll be willing to share my mottos and maybe inspire more people as I continue the difficult journey I have ahead of me (no cures exist). Meanwhile, I have a goal of taking a long overdue vacation this fall with a few friends to Covington, GA, where one of our favorite tv shows is filmed. This is a lofty goal, but it keeps me focused on a positive future. I’m working on being physically able and hoping for a little help to afford the trip, as well as to repay my parents who have been funding the travel to my specialists. Please help me.
Of course, there's no guarantee that I'll stand out and that she'll be willing to help me, but I'm trying to be hopeful. Even if she doesn't, I'm proud of myself for FINALLY figuring out what to say. I could've asked her for a lot more, but I realized that I've been figuring out quite a few ways to get help from the government, the state, the county, etc. I haven't been able to fill out all the paperwork or do everything I need to do, but I'm slowly accomplishing little bits every day.
Since I got out of the hospital a week and a half ago I've been feeling very depressed and exhausted. I ended up in a bad place and started questioning why I was fighting so hard. Over the past 2-3 days I started pulling out of it and recommitting myself to do what I need to do. Today I talked to my health coach from my insurance company and as we finished our phone appointment she was saying such incredible things. She was saying how I'm very talkative and have a lot to say, much of it being the struggles and problems I've been dealing with, but I'm not complaining - I'm getting it out then talking about everything I've done to help myself and fight to get ahead. She said she's always amazed at how I keep focusing on what I can do and always asking questions to find out what other help I can get. It was great to hear her say all that. It also helped lift my spirits a little higher and gave me some energy I haven't had in so long. I even had the energy to do some light cleaning and straightening up around my living room, dining room, and kitchen. It wasn't much and isn't very noticeable if you didn't see me doing it, but it feels good to have gotten something done. It's even more incredible because I haven't slept well for several nights, I've had a little more pain than before (mainly head, neck, and abdomen), and I haven't been able to do any notable activity in several months. Hopefully it will help me sleep tonight!
Right now I'm relaxing on the couch a bit and reminding myself I can't take a nap. A friend is coming over in about a half hour (bringing her kids) to take me grocery shopping for a few necessary and sale items. (Perhaps the one positive of having a paralyzed digestive system and hardly being able to eat food is that my food expenses is much less than most people.) I'm going to ask her to take a very quick run to target for just a few items where I'll use a regular cart, then we'll go next door to the grocery store and I'll probably use an electric cart. While I was cleaning I kept saying I shouldn't waste the energy I had but I just couldn't stop! It shouldn't take too long so once I'm home and the food is put away I'll lay down and hopefully make it an early night.
With a little luck I'll have some energy again tomorrow as well as a little less fog in my brain so I can tackle the large stack of paperwork I need to get started on for all the aid I'm going to be asking for.
Thank you to all my wonderful sparkfriends who have been supporting me and I hope some of you have found a little inspiration from my mottos. I know it would be much more difficult for me to make it through each day and through each complication in my life if I didn't have the incredible support all of you have given me. THANK YOU!
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.
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