Monday, July 16, 2012
My PICC was removed on Friday and right away my arm opened back up and bled for awhile. The 'fun' was apparently not over. On Sunday at 4am I realized my arm was really itching again. I needed to get the gauze and dressing off. Turns out I was breaking into another allergic reaction! GAH! There was also a big lump right behind it, which was either a blood clot or major inflammation from the reaction. I have a feeling it was a blood clot though. So I pulled off the dressing, cleaned it with alcohol swabs gently, then debated getting it checked out in the ER (a blood clot could be deadly). I laid down for a little bit as I was getting some weird chest pains as the lump started going down. I was worried but I was reminding myself it's probably a psychosomatic response. I just kept an eye on it and kept my phone close. But by 5am my arm was really itching badly and breaking into hives again. So I got in the shower and turned it up nice and hot. The heat would help thin my blood so if I did have any odd clots it would help dissipate them as well as relax me. I got out about 6 or 630 feeling better, but with my arm looking horrible. The chilblains also are starting on my foot again, and the allergic reaction started breaking out on my hands also. Rains and pours, huh? So I came upstairs and put a generous spread of a cream (like a steroid cream, but not steroids) on my arm then covered it with one of my wraps, put some more on my foot and wrapped it, then rubbed it all over my hands and put on gloves. I left the gloves on until around 10 am when I finally started feeling tired enough to sleep. My arm looked better right away, but my hands got worse until I also dosed them with an anti-itch cream. My arm started looking worse when I woke up around 3pm and I put more cream on a little later. It will take a while for it to clear up, but last time when the PICC was removed the same thing happened with my arm and it spread down my arm and all across my chest, so I'm trying to not let anything touch the area.
Today I was hoping to go to a movie (Magic Mike woot woot) but I couldn't get myself moving. It was a good thing because right about when the movie would've been started I got a phone call from the nurse for my doctor in Milwaukee. I'd asked her to send copies of the blood tests they did and I had some other concerns to talk to her about. Well, she's sending copies of the blood tests to my GI doctor in Philly, my primary doctor, and me because some issues showed up. My cortisol levels were on the low end so he wants them rechecked for morning and night, my B6 is off (I don't remember which way), and my B12 is double the maximum. Very bad to have your B12 that high. She wanted to make sure I'm not taking supplements and I wasn't getting enough from the TPN to make it that high. I looked up a few causes and what stood out was a hypereosinophilic syndrome (I've had eosinophilic esophagitis in the past) which is a problem with your immune system and white blood cells, problems with bone marrow (I had iron poisoning due to long term birth control use), malfunctions in the liver (I have a hemangioma in my liver but that shouldn't cause problems), and things like leukemia (doubtful I have cancer). We're thinking I might have an overgrowth of bacteria in my gut, which would also explain the constant burping and bloating I get with every meal. (My GP can cause both, but it has been getting worse.) Some bacteria excrete B12 in the body. She also said the B6 issue could cause nerve pain. The last 3 nights I've also been dealing with what appears to be restless leg syndrome, in both my left leg and both arms. Fun, right? I'm thinking it might be from the meds they put me on to try to stop the migraine, which aren't working. I checked and those meds can be used to treat RLS, but we all know I'm odd. She's also going to send information to my primary doctor so I can get the DHE treatment to stop this migraine. That will mean a 4 day hospital stay, but I'll deal with that when it gets set up. In the meantime, I want to take a good look at those blood tests and see what else is funky in there so I can try to narrow down what's going on. Sounds like they'll also send in an antibiotic to see if that helps lower my B12.
On to the good news: I had a 2 hour massage this afternoon. Holy krikies the time goes quickly! He really got in and tried to release some of the muscles that are crazy tense. When he was working on my left shoulder blade my left arm was burning and tingling in a good way. So he did pretty well. As for asking him out, I'm certain there are rules against that. But we found out today we have a few more things in common than we found last time, and that's pretty cool. From his responses to me, I'm thinking if I started doing better physically it might be better. I'll go to him a few more times and see what happens. I can always try another massuese if need be, but I like being able to talk to him without expectations. If we find more in common and he's interested, it'd be awesome.
Since I didn't go to the movie I vacuumed and did a load of towels and a load of all my other clothes (most of it is just pjs). I still have to get the clothes out of the dryer, but I'm just enjoying laying here, nearly dozing off. I'll get up and make some dinner soon, pull the clothes out of the dryer, then try to go to sleep at a decent time so I can be awake and alert in time to go to the movie tomorrow. I have no major plans for tomorrow, but I do on Wednesday and Thursday, and I've been wanting to see this movie since it came out.
Sunday, July 15, 2012
Tuesday was the concert I was waiting for. Previously I explained how well I know the band and why I really wanted to go. It wasn't easy at all, but I was able to get there and enjoyed myself. It was hard on me and I had several things derail my day early on, but I'm glad I went.
I was already tired when I woke up - what else is new. I called to find out what the hold up was with getting the compression legwear I've been waiting 3 weeks for. They said they never heard of me and had no record of me. WTF? I called the main office and still they could find no record of me in their system at any location. They had nothing ordered for me. By this time I was furious at them. I've talked to them several times and have requested it to be ordered at least twice. The last time, a week prior, they said they'd put a rush on the order since I'd been waiting so long. Yet no one had any record of speaking with me. UGH! So I told them forget it and I called a few other places. One that's about a 20 minute drive away actually had some in my size in stock. So I drove there and picked up 2 pairs. Well, that was easy! I was running late by the time I got home but I needed to sit down for a few minutes and relax before starting to get ready. Then I did the whole annoying process to protect my PICC and got in the shower. It took nearly an hour and a half because I wanted to shave my legs to make it easier/more comfortable to wear the leggings for the first time. While I was in the shower I got a call from the first place. When I got out I listened to the VM - guess what... my legwear arrived. Suddenly they knew who I was? That's crap! So I call back, explained why I was so furious, and told them I was cancelling the order.
Here's what I looked like for the concert. I did very light makeup and not much with my hair, but I think I looked nice. I did wear the compression legwear (which you couldn't tell without looking closely) and canvas shoes so I was comfy for walking and standing. I also wore a different bra because this one has clear straps and strapless bras ALWAYS fall off me so I was worried about that happening. The fun thing was it is a pushup bra. hehe
By the time I was done with hair, makeup, getting dressed, and putting together what I needed to take, I was a half hour late. The lightrail into downtown leaves about every 10 minutes at that time, so it wasn't like I missed my chance. (At the end of the night it goes down to leaving every hour with the last train leaving at 1:15 am.) I texted my friend and they were already getting into the venue but she'd send her husband out to meet me at the train and walk the 2 blocks with me. So when I was a few minutes away he walked over and was right there waiting for me. It was nice because I didn't have to worry about what 'might' happen.
I've never been in that part of the venue before. It's this teenie little space at the front of the large venue, and probably only holds 200 or 300 people. I was given a barstool with a back on it that was reserved for me. I was so glad for that, because the few other stools there didn't have backs and were taken by the time I got there. I would've had to stand in the crowd all night. I was also very glad I thought to bring along earplugs, because it was crazy loud in there from all the people and the echo, let alone the music itself. The first band was 'eh'. Then my friends went on stage and I got into the show. I saw my friends up in front rocking out and interacting with the guys on stage, and I admit I thought about going up there a few times. But I knew I couldn't. They played a song that the lead singer said they'd never played live before and I wish I was up front so I could correct him right away - they played it live before their first major CD was released. So after the show I called him a liar and shocked him that I remembered that. haha Turns out he had asked one of my friends who was up there but she wasn't at that show. One HUGE plus was where I was sitting I had the A/C blowing on me so I didn't sweat at all. Great thing since sweating could've caused an infection around my PICC.
There was an ex-friend there, which bummed me out a little. It was hard to avoid her in a small club, but I just pretended I didn't know her and left her to herself. The funny thing was she was so excited to see our friends, but after the show I was the one being asked to stay and hang out, getting extra hugs, and being told they were so glad I was there. Am I bummed that her and I are no longer friends? Sure. But she's such a negative person who can't get far enough out of her own self-destructive thoughts and behaviors to realize how she hurts those around her. I was proud of myself for not getting pulled into a fight or even losing my cool when she stuck her elbows out to try to stop me from walking past her. She was being childish and I'm better than that. She's the one who threw away our friendship, and after taking a hard look at what our friendship was I'm now okay with that and I will not allow her to cause any more issues in my life.
After they kicked everyone out of the venue, we went next door to grab some food. I watched as my friends ate. I told the server I couldn't have anything then changed my mind and asked for some warm water. He was kind enough to get me water without ice and added some hot water to make sure it was a great warm temp for me. I talked to my friends and ran outside to talk to the band some more while they loaded out, and after about an hour or hour and a half my friend's hubby walked me back to the train. It was a fun night, though very exhausting. I had left the house about 6:30 pm and got back a little after 1 am. It was hard on me so I spent the next 2 days trying to recover. The compression legwear did help give me energy and help me not get light headed, but it can only do so much.
A few things were icing that night. My friend and her hubby really paid attention to my needs and kept an eye on me. Her sister grabbed me into a big hug several times saying how glad she was that I was there and that she loves me (a little alcohol in that, but it was great still), but the best time was when she said 'This sounds weird, but you smell really great! Honestly!' and she was sniffing me as she hugged me. hehe After the show the band's manager (an ex-member) saw me, got a big smile, said "You made it!" then gave me an extra gentle hug after he saw the sock around my arm and remembered my medical issues. Turns out, he's been reading my CaringBridge! I had no idea! There's a reason why he's considered such a caring and wonderful person. Oh and a guy walking by on the street while I was talking to the guys as they were loading out complimented me quite nicely. He was a little old for me (12 years difference) but it was REALLY nice to hear that!
Wednesday the nurse came by to change my dressing (good thing because I scratched 2 small holes in it as I was trying to fall asleep the night before - I taped them shut so it was okay). Thursday the social worker had to cancel, so she'll come back this coming Thursday. Friday I had the social security disability phone interview, which lasted about an hour. It will take several months or more before I get an answer. Right after I hung up my nurse called and said she'd be early to my appointment to remove my PICC.
That's right - my PICC is gone! Unfortunately I did have a scare. The bleeding stopped pretty quick while the nurse was here, but I must have laid on it wrong while napping right after or moved it around too much afterwards because it opened up again. I had a hunk of gauze and a dressing over it and the gauze was soaked through with blood. I called the nurses and they said to change the gauze and dressing. If it was still bleeding they wanted me to go to the ER, but luckily it had stopped. As of noon I could've taken a shower, but after that I'm just not in a big hurry. Plus I'm still just feeling worn out. I have a shower chair, but if I'm too tired not even that helps. I'll shower tomorrow.
If you made it through this whole blog, thank you! This is much longer than I thought it'd be. Hopefully this week will be a little more laid back, though I have the feeling it won't be. I have a 2 hour massage with the cute guy Monday afternoon, so that I'm looking forward to! Speaking of, I'm pretty sure it's against the rules for me to ask him on a date, but I'm thinking I'll tell him I'd be interested in dating him if it wasn't against the rules and see what he says. I can always go to another masseuse. Though I prefer to be friends with a guy for a little while before dating him, so if he'd be interested in that it'd be awesome. But I can't get my hopes up because I don't want to be banned from the place. haha
Monday, July 09, 2012
My primary doctor agreed that it's time for the TPN to end - so I'm finishing today's bag and having another on Thursday or Friday, then I've gotta find out how to get the PICC removed. My home nurse is coming on Wednesday so I'll ask if they can do it, and if not then I have to email my primary doctor to put in an order to have it removed in the outpatient infusion clinic at the hospital. I'm glad to know I'm almost done with it, but I kinda wish it would be out before the show tomorrow! Plus I'm 10 lbs over what they want for a minimum weight (25 up from where I bottomed out when underweight) so it's time to get this annoying thing out! If I lose the weight again, I'm going right onto a J-tube and that will be very long term.
I was really hoping I'd have the compression stockings for tomorrow, but due to miscommunication on their part I still don't have them. I called this afternoon and they said a bunch of the recent orders came in but haven't been reviewed to be given to patients yet. I asked to leave a message to have her call me ASAP tomorrow if mine are there so I can run and get them. The hope is they'll keep me from passing out so easily, since it will push the blood out of my legs and back to my heart. Since the high sodium diet isn't helping and is instead gathering fluid in my skin I need to try something else.
I also called and got an appointment for an hour massage tonight. It's my first time having a man instead of a woman and he specializes in deep tissue, so I'll have to keep a reign on him. (The EDS causes my joints to easily dislocate, so I can't have hard pressure or it'll hurt me.) I'm hoping I can sleep off the soreness tonight and get the benefits tomorrow.
My friend from Iowa will be driving up tomorrow to go to the show and the plan is I'll take the lightrail into downtown then they'll either walk the 2 blocks to the station to meet me, or drive by and pick me up to drop me right at the door. Tomorrow morning I have to call and ask to have a reserved seat set up so I don't have to stand and ask if it would be okay for me to bring some Ensure in, since I won't be able to eat anything for a few hours before going to the show and nothing until I get home (which might be 11pm or later). Good news is I found out that because I'm approved for disability transportation I get a deeply discounted rate on the lightrail: 75c per ride all day any day instead of $1.75 non rush hour or $2.25 during rush hour. I like that idea!
Thank you to everyone for your support. I've backed off the high salt diet (doctor ordered) for the past few days because that plus the TOM and everything else was clearly too much for me. I'm still not wholly positive or close to where I was a few weeks ago, but it's a step up. This week is starting out decently and I hope it keeps getting better. Besides everything tomorrow and my home nurse visit on Wednesday, the social worker is coming back on Thursday, then I have the social security disability interview on Friday. A lot to do this week!
EDIT: The massage was pretty good. I won't know for sure how well it worked until the morning, but I'm feeling pretty good. Doesn't hurt that the masseuse is adorable, seems sweet, and is totally single. I'm thinking I'll be seeing him again no matter what. haha Though it might be a bit unprofessional for me to ask him out (doubtful he's even allowed to ask out a client), so I might have to pull an "either I can keep coming to you for massages or we go out on a date" type thing. I dunno - I'm terrible at asking guys out! But I was already planning on going for a 2 hour massage (I have some prepaid massages to use up!) once the PICC is removed, so I'll be scheduling him and seeing what happens.
Saturday, July 07, 2012
This doctor ordered high sodium diet is kicking my butt. My entire body from head to toes is a mess of cramps, and my entire abdomen and chest especially is a mess of knives and vices. All this and it's not even bringing up my blood volume, blood pressure, or helping me to stop blacking out. Instead, it seems to be gathering fluid in my skin so it adds to the fragility and softness from the Ehlers Danlos and now pattern indentations in my skin can last a half hour. And today I'm getting enough water because I'm on a TPN bag, yet the cramping is so bad it hurts just to breathe.
My head is also throbbing today. Yesterday, when I brought up my migraine, I guess I should have reminded everyone of my 2 migraine diagnoses: Complex and Aytpical Migraine, where the migraine affects my entire body, and Status Migarnosis, where my migraine has gone on nearly non-stop for at least 2 years but perhaps as long as 20 years. This is not what you think of when you hear 'migraine' - it is so much more. I've had headaches every day since I was about 5 or 6 (I'm now 31). I've learned to function when my pain is at an 8, I don't get fevers from infections, I can drive and show no signs when my blood sugar is in the 30s or 40s, having a blood pressure of 82/50 is nothing to be shocked over, I can live a month with almost no food and little water, and medications that should help others tend to make me worse. There is little about me that could be considered normal.
I do what I can to stay positive. Lately, it has been extra difficult. Getting more diagnoses is a step in the right direction, but lacking adequate treatments means I'm not getting any better. I'm weighed down with so much that I can't help but feel drowned now and again. So if anyone has been wondering why I've been a little off-kilter lately, this is why and I'm sorry. The pain and the problems just keep building. My parents have me so upset I want to spit nails. I've jumped through so many hoops lately and I keep getting burned. It also doesn't help that I only shower about 2x/week because the PICC dressing can't get wet, making every shower a huge, uncomfortable production. I seriously miss long, hot showers! I'm frustrated, I'm exhausted, I'm in pain, and it seems like there's no end to it.
I know I have to keep trying. I always do. Days like today I'm just so destroyed I can't stand it. I'm on the couch watching movies, trying to convince myself to eat when the pain is telling me food might kill me. I'm on a TPN bag, so if I don't get much else down today it won't be that big of a deal. I'll do what I can for the next few hours, hope for more than 2 hours of sleep tonight (unlike last night), and hope for a better day tomorrow.
Friday, July 06, 2012
My bloodwork looked fine again this week (as it always does) so they've agreed to put me down to 2 days a week of TPN. I'm ready to be done with it. Even if I lose weight at this point the TPN is over and I'll be going to a J-tube.
I got about 11 hours of sleep in a 12 hour period today. I'm still exhausted. I was woken up at about 7 1/2 hours and again an hour later by the phone calls from my infusion team, but both times I barely stayed awake while talking to them then was out cold again. I take so many meds so I can fall asleep then I sleep for such a long time. The nurse for my doctor in Milwaukee was supposed to call me this week about what changes they want to make because of all the issues I'm having, but she didn't call. I want them to get me onto the 4 day DHE to try to break this migraine, as nothing else seems to be working.
As for weather, Minneapolis hit 102* today - even hotter than they thought it would be! (We broke a record on Monday with 99* and again on Wednesday with 101*, with the heat indexes hitting as high as 112*.) A warm front is stalled, splitting MN in half - with a 30+* difference from the south to the north! It's in the high 60s in the arrowhead! Tomorrow is supposed to start a cool down, taking the metro into the mid 80s for the next several days. That's awesome, as I have a doctor appointment on Monday then the concert on Tuesday.
At about 10 pm I drove to Walmart to pick up a few items. They have 40 count packs of Rice Krispies Treats for under $9! That's 22.5c each. (I got 3 boxes, as they digest easy and I'm addicted to them.) I've been trying to find more powdered Gatorade to add to my miralax and water, but it seems like they're cutting back and phasing out the individual powder packs. Grr! I also picked up more pjs - a clearance top and cheap pj shorts. Same top I had gotten a few weeks ago, but instead of buying a similar bottom that was more expensive (like last time) I found cheap shorts that matched one of the colors in the shirt. Since I spend most of my days in pjs and many of mine are in desperate need of replacement (the shirt/shorts I'm wearing now doesn't match at all, the elastic on the pants is shot so they want to fall off and the shirt has a few holes.
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