You Know. I Just Don't Get It.

You know. I'm just not sure how my luck could be THIS bad. Continuing exactly where I left off last time with "muscle spasms and musculoskeletal pain". Yea, no. The spasms continued. Bad, I'd be doubled over in pain, couldn't lay on certain sides, just. Agony. Nothing helped and if I moved at all the spasms started up. I didn't even make it to my 2 week wound check before calling my doctors office. My original wound check was the 26th. I made it to the 21st and just couldn't do it anymore. Went to the office and they discovered the top lead was out of place and was like, shocking me. Luckily I'm not fully pacer dependant. It wouldn't even "capture" with the interrogation. She would pace it and SHE could feel and see the muscle in my chest spasm so she turned the top lead off. My doctor wasn't even IN the office and they called him to tell him, he said to schedule a lead revision so they set that for January 8, 2018. I had to go get another xray. They said with the lead turned off, the spasms would stop and I'd be fine. The spasm didn't stop, even in the office after she turned it off but I brushed that off because she'd just caused the spasms so I thought maybe it was just from that. Nope. I went back December 29th. That was the fastest I'd ever been dismissed in my life. I was still having the spasms but she assured me the lead was off and it wasn't from the pacemaker and to just "keep doing what I was doing" and keep the appointment for the 8th.

Despite the pain never going away, I went home and waited on my appointment. On Thursday, January 4th, I tried to go through some totes of laundry, to get rid of the clothes that didn't fit and such. Breathing started to hurt. Pains were sharper. I told the girls I needed to go lay down and rest. Went upstairs and took a beta blocker, inhaler and laid down for a few minutes. Once the feeling "passed" I sat up and was messaging a friend and decided to order take out for the kids as I didn't feel well enough to cook. After I sent in the order I started having sharp throbbing, spasming pains in my right side, about rib area. I started feeling pre-syncope symptoms and my friend urged me to call my mother to come get me and take me to the ER. I called and by the time she answered, it was so bad all I could get out was "I need help" and a spasm gripped me so hard I screamed into the phone. There was no waiting on mom to come get me. She hung up and called an ambulance, mind you she was 30 minutes away in a different city and state (I live on the border of 2 states). I sent the kids a couple doors down (apartments) to my friend's and waited on paramedics. I passed out trying to walk from my room, I hit my head and had a bump on my head. Fire fighters showed up first and kept trying to convince me it was probably just kidney stones (never had one in my life but eh). Once I got to the ER and the nurse was triaging me in the room, I passed out again. As I was blacking out I could hear the nurse calling my name, asking if I could hear her and telling me to stay with her. It was so bad, the only position I wasn't in complete agony in, is laying on my right side. I laid in that position for EIGHT (8) hours. They did blood work, urine screening, and an x-ray and then tried to do a CT. It hurt so bad to lay on my back I was sobbing. They couldn't and/or wouldn't give me anything for the pain and I honestly didn't think I'd be able to lay flat. But it was the only way so I sucked it up and tried. Moving from the CT bed back to the gurney, my IV came out. Once I was on the bed I looked down and there was blood everywhere. The doctor came in after a while and just stood in the door, kinda just leaning against the wall staring at me and finally he spoke. He said "You're the type of person that weird stuff always seems to happen to aren't you?" I couldn't do much speaking I was in so much pain so I just nodded furiously.

Turns out, I had a hemothorax and pleural effusion. They used both terms but I'm not sure exactly what the difference is. My lung wasn't quite collapsed but it was compressed severely. All of which was causing the spasms and shortness of breath. Yay me I'm being admitted and they're going to do a thoracentesis. But, there were no beds on the floors so I get to stay in the ER, but they were putting me in a hospital bed instead of an ER bed (much more comfortable). Then they called my heart doctor to let them know what was going on and they decided to just transfer me to that city since they were going to do the surgery to revise the lead in 4 days and they would just do the thoracentesis there. Got a "nice" ambulance ride 30-45 minutes to that hospital and got to sit in the ER there until a few hours later when they took me back. I had zero pain management (not even a Tylenol), no food for 25 hours, no water or ice after midnight. I get that they were doing a procedure for the no food but 25 hours is excessive. Not to mention the no pain management. They knew I had something bad but hospital one gave me nothing even after asking and being told they would. Hospital 2 said they would too but then at the last minute decided not to because the anesthesiologist who was doing the thoracentesis didn't want to risk an interaction. They drained 500 ml (a half a liter) of bloody fluid from the space under/around my right lung and still had more in there. They said it was too thick to drain any more. Today I had a further 500 ml drained because it had yet to resolve but that's skipping ahead. They kept me over night and the next day they cleared me to go home if I wanted to and to come back 2 days later for the pacemaker lead revision. I felt mostly better, had laid on one side for 8 hours so I was sore and missing my kids and just wanted to go home. So I did. I told them before I left that I couldn't lay on my left side without pain and shortness of breath. They gave me the option to stay if I wanted to, but I didn't. That night, I discovered that I couldn't lean over/bend forward without struggling to breathe. That was Saturday. By Sunday evening, I had a fever of 102. YAY. Not. Plus that meant they wouldn't do the surgery the following morning. Off to the ER at hospital number 2 I go. The first hospital had said I had a UTI, except cultures were negative. The second test said I had crystals in my urine indicative of a kidney stone. OMG I saved the stupid draft and exited because it froze and it lost like, 2 paragraphs. UGH. 

Let me see if I can type all this back out. Anyway, where was I. Oh yea, kidney stone. Didn't have one of those either. Nothing was culturing as positive. They put me on vancomycin and meropenem. The vanc is supposed to only be an hour or so twice a day but I started reacting to it. Nothing BAD just itching. They gave me Benadryl, Zofran and slowed the drip infusion down from 200ml per hour to 100ml per hour. That was taking roughly 5 hours and then they would switch to the meropenem. Someone somewhere decided that was too bad or annoying or whatever so they slowed it down even further to 41.7ml per hour. I'm guessing they mathed it out and that got close to a full 24 hours with the exception of the time they had me on meropenem. I'm not sure if it's just how they did it, like if it's a known thing or if it's just a me thing but the vancomycin started to lock up my veins like that. They had to change the IV site daily. My veins would be rock hard for several INCHES on both sides of the IV site, the muscle and skin around it would be swollen, hard, red and warm. They had to change IV site so many times and draw blood from so many places, my arms, both of them, were black and blue. One time they had to call a nurse down from another floor to change the IV. Another nurse told me they would have to get anesthesiology if they had to change it again. And a third told me the next step would probably be a central or PICC line. They were drawing blood and stuff daily, maybe twice a day. Culturing blood, they cultured the fluid they drained, they cultured urine. Nothing came back/grew an infection. So they had no idea why I had a fever. They had told me that I wouldn't be able to have the revision surgery until I was fever free for 24-48 hours but I'm assuming since they couldn't find an infection they decided I was ok to proceed.  During prep, they even shaved my bikini line in case they had to go in through that artery. They found an infected hair/boil that they lanced after the lead revision. They seemed excited like maybe it wasn't the only one and was the cause of the fever. Negative ghost rider. I get them occasionally when I shave because my hair is so thick all over. They removed the pointy lead and put in one that apparently looks more Christmas tree shaped that wont puncture the wall of my heart. I woke up mid surgery or at least at the end. Conscious sedation is a weird thing. One minute I'm either asleep or oblivious, the next I'm wide awake in the cath lab while they play around on the other side of the drapes. They sent the lead to the lab to be cultured as well, and again. No growth. No infection.

Also, there's this. Non sustained v-tach.

I still didn't get to go home the next day like I had for the prior surgery. They hadn't found an infection but my inflammation levels were extremely elevated and my hemoglobin kept dropping. In fact, I was 1 blood draw away from receiving a blood transfusion. I wasn't looking forward to that. The doctor came in and was explaining the risks and such to me and I stopped him and asked if he remembered who he was talking to and if he explained the risks, they'd likely happen. Naturally though he had to explain but LUCKILY, once my levels reached 7.2, they turned around (with the help of iron supplements) and started climbing slowly again so I got to skip that procedure. There were a couple days where I wasn't really doing anything but laying in the hospital bed taking the pills I already take (with the edition of iron and something for inflammation. I kinda liked that doctor. I was a bit amused about how ... stumped he was. He admitted he had no idea what was wrong with me, that he'd never seen anything like it, that he was scratching his head and had to brain storm with other doctors. But he was afraid to release me. I'm not sure if it was just he wanted to know what was going on, if he was afraid something would happen once I was release and he'd be liable or what it was. It wasn't until his day off that his colleague discharged me that evening. THAT doctor I did NOT like. He's the one who discharged me to go home following the thoracentesis, which I don't hold against him, he gave me the option to stay if I wanted to, however, he messed with my meds. And I'm fairly certain he's the ignoramus who put me on a low sodium diet (despite my diet being regular and having an rx for 3G of sodium pills per day in addition to a regular diet). He told me to stop my blood pressure medicine all together, he knocked my beta blocker down from 60 mg (where it's been for probably a year) down to 10 mg, which does nothing, let me tell you, and I can't remember what all else. Like, just stuck his hand in the hat, pulled something out and started messing with it. He wasn't even a damn cardiologist, just a hospitalist. But I digress. While in the hospital, I developed pleurisy from the pleural effusion. I had the typical follow up for wound check and they set me up an appointment to see my primary care doctor to follow up with the pleural effusion and pleurisy. I'm still pissed at the device clinic and doctors office for ignoring me and letting it get that far. This is why I prefer NOT to work with nurse practitioners or anyone not intimately acquainted with my disorders. Or me for that matter. Most of my doctors, even my cardiologist, would have known to take me seriously but I wasn't seeing him yet, just device clinic and nurse practitioners. So in a way, I blame them. Sure they had know way of knowing I was that bad off but I don't go to the doctor until I can't take it any more. Ever. And even then half the time I have to be talked into it. Whatever. Lesson learned.

Anyway, at my follow up with my primary care doctor a week later, I still had pleurisy and the cough so she gave me more cough meds, ordered some repeat lab work and then set a follow up appointment for 3 months out. Ha. The lab results came back elevated just like in the hospital so they changed the follow up to 1 month instead of 3. I made it 2 weeks. I was taking double the prescribed dose of cough meds (which is an option if the first dose doesn't work, I just did it without asking) plus rotating with 2 over the counter cough and cold meds, plus going through whole bags of cough drops and using a rescue inhaler. Some days I couldn't even get out of bed. She ordered a repeat chest x-ray which I didn't get to for 4 days, after my follow up with my cardiologist, who was concerned by the numbers as well, and ordered some autoimmune testing because of which tests were elevated. Those tests came back normal but the x-ray showed a "mild to moderate effusion" still and BOTH doctors called me to set up with pulmonology. 

So they got me into pulmonology, who diagnosed me with asthma for starters. I've suspected it for a while but it wasn't severe enough for me to pursue it (see again with the I don't go to the doctor unless I have to or for a follow up/my regularly scheduled appointments). His assistant and a resident came in first to kind of do the beginnings, take everything down, consult, etc. We talked for a while and then she goes "Bare with me for just a second, I have an idea that I'd be willing to bet money on if I was a betting woman"... and pulls up google. After reading for a few minutes, she goes "yep, I think you have something called Churg-Strauss Syndrome..." Apparently just last year, she'd been given a case report of a woman who had a lot of the same things happen with the effusions and stuff like that, her test results were negative but she still received the diagnosis. It's also called  Eosinophilic Granulomatosis with Polyangiitis, or EGPA. I guess I'll find out more at my follow up. Anyway, he ordered a CT scan to see if the abnormal x-ray was from fluid or if it were, perhaps, scarring. CT scan proved it was still fluid so another thoracentesis was ordered. An additional 500 ml of fluid was removed. I tried to take a picture of that too, but they denied my request. Walking away from the hospital that time I already feel a LOT better. My cough is nearly gone, my breathing is a bit easier. I hope I'm finally on the mend. They mentioned a possibility of me going to rheumatology next but who knows. Anyway, I am not sure if this was rambling or not, I got side tracked when half of the blog post poofed but eh. I probably forgot something but I'll remember eventually if I did. 

Bionic Woman

I'm home now. Well, I'm at my moms and have been since probably lunch time on Thursday but boy has this been a wild ride. Check in time was 6:30 AM. I am not a morning person. At all. Stayed with mom the night before and bathed with the hibiclense the night before and the morning of. Got to the hospital, checked in and waited in the cath lab waiting room with mom for probably 20 minutes when the nurse came and got me. She put the IV right above my thumb. They don't like putting it in the bends for comfort and they wanted to put it on the side with the device. They also had me pee in a cup to check for pregnancy. Then they put on numerous sticky patches that they used and some they didn't (ECG) in case one set/site fails, plus the defibrillator patches on my front and back. Once in the lab I scooted over onto the bed/table thing and they put the arm tables and then put arm restraints on me so I didn't move or grab the doctors or anything. Then they gave me versed and fentanyl for conscious sedation. That's the last thing I remember. Mom said I was awake when she got back to recovery but I don't remember anything.

The pain meds they gave me and the zofran barely took the edge off so I was getting morphine every 2 hours and as such I spent much of my hospital stay nauseated and asleep. For some reason pain meds make me ill. Either my sugar drops or my bp or I get super nauseated. It's no fun. I'd brought my phone and headphones with hulu, a word search, sudoku, everything. All I did was sleep. I had the TV on in the room but the volume all the way down. I have so many marks on me it isn't funny. The IV stopped working in my thumb so all in all I was poked 4 times with 2 IVs. My night nurse was super nice and handsome. Figures you see nice looking people when you look like a trash heap.

Anyway, when I got home I still slept for like 2 days off and on. Today is the first day I haven't slept for hours during the day too. Today is also the first day I woke up and felt half way human. I took the big main bandage off like they said, I wonder how long until the steristrips will take. The area between the bandages to my right shoulder is bruised, the IV sites are bruised. But I'm finally on the mend. I did however discover I've been having (or developed after the surgery) non sustained ventricular tachycardia. The nurse ran in and checked on me but said it was only 5 beats. I'm not sure what that means.

Then not last night but the night before I started running a low grade fever, chest pain and shortness of breath etc. I went to the ER because I feared infection or blood clot (familu history). My d-dimer was positive so I had to have a CT scan which was clear as well as the chest xray was normal. They said it was just musculoskeletal pain. Yesterday my back locked up and I spent the day on the couch but today I feel much better. I just wonder if and when its working and what it feels like.

Migraines and Medicines

One week until my neurology appointment. I wish Big Daddy could go with me but I doubt he will get to. I'm not even sure he will be able to go the 31st. I don't want to go to either of them alone. Firstly, I hate driving half an hour (EP is 45 minutes) one way, second, I need a GPS, I don't know how to get either place. Big Daddy drove me to the EP and the neuro moved offices so even if I remembered exactly how to get there, I don't know now. That's on my "To Do" list. Worst case I'll get directions from Big Daddy and try to get someone to go with me. Logically he can't go to both, he doesn't get paid for not being there and one day cuts into the check enough without the added day.

I have no clue what to expect. They want to put me on a stimulant to wake me up during the day but it would raise my heart rate. If the dose of my beta blocker is increased would that negate the effect the stimulant has? Obviously I'm "thinking out loud" here, I plan to ask my doctors everything but I'm impatient and a week seems so very long when you're in the dark.

One of the potential drugs I'm thinking will be a complete no-go. I'm going to try not to come off offensively but this one threw me. It's called Xyrem (Sodium oxybate), also known as GHB. My ignorance was in assuming it didn't have a legitimate purpose but apparently, it was created SPECIFICALLY for people with Narcolepsy. I don't think I'd be a candidate since I have small children and Big Daddy sleeps like the dead but even if I were, it'd scare the crap out of me. I've watched entirely too much TV with that drug used in sexual assaults. That's not my concern, I'd be here when I took it, but JSmiley still wakes up, so do the big 2 on occasion. Or if an alarm went off... Big Daddy could sleep through a hurricane. It's just not a good idea.

And then there is the migraine that just. wont. QUIT! I can't remember exactly when it hit but I know it was the 15th, probably after I got home. It's been coming and going since then. And the one yesterday, the migraine meds didn't get rid of it. Nor did I sleep it off. It just dulled it (granted I went from nauseated, stabby feeling and over 75%blurred vision/blind - to just sharp (SHARP) but less intense throbbing). I haven't taken it often though. I was going to take it again but I'm not sure how much is ok. It says 2 every 8 hours as needed though by those standards I'd have been SOL since that would've put me close to midnight. A friend of mine is on a very higher dose so I'd have been ok (as in, an extra dose wouldn't kill me - my friend is/was on quadruple my dose). But it dulled it to tolerable. I can still feel it though. I'll be ok until my appointment. I'd be "ok" either way but if i have to have a recurrent migraine, I'd rather have dulled pain over full pain (though of course it goes without saying, I'd REALLY prefer NO pain). More later.

Long Whining Post

Hello 1 AM. We meet again. Not that it's surprising but boy I hate it. JSmiley is awake. Big Daddy said he was too tired to help get her to sleep. I'm not fighting her. She can just lay here with me in the semi dark until she decides to go to sleep. It kind of worries me sometimes, all these health problems of mine. I'm afraid that I'll have passed on something to them. JSmiley has my sleep patterns. When Big Daddy isn't here to help, she sleeps when I sleep (or I sleep occasionally while she sleeps, sometimes she won't sleep when I'm tired and sometimes I can't sleep when she is). The big 2 sleep much better though occasionally DCourtly will keep SDiva up. And prevent people from napping. All my kids nap. I don't know. It's just something that worries me.

I went and saw my "temporary" primary. My primary is STILL on extended leave so I saw her nurse practitioner. I do not like her. At all. She seriously rubbed me the wrong way. I'm guessing she was old fashioned. She looked like she was old enough to retire. I was there for a mole on my back and to try to get something for my anxiety. While updating my medical history, she "couldn't find" some of my conditions.... So she improvised. NCS was put in as "Cardiogenic Syncope" and "neuro syncope" and who knows what else. Oh and she asked me if my ex-stepfather abused me since the only thing that changed the year I started having anxiety was my mom got with Big D's dad and had him. And you know how much I already can't stand most NPs. She DID write me a prescription for prilosec though. And an antidepressant (I asked for something for anxiety). I'm not going to take it though. I know nothing about it, she's weird and I don't know what kinds of changes they'll be making to my meds when I see my doctors. I know my neurologist was going to switch migraine medicines, my electrophysiologist will probably increase or change some of my meds (another topic for another day) and one or both need to sign off on a treatment for the narcolepsy. And one of them or the sleep center is going to prescribe something that the other(s) may agree with. I go back to see her mid-next month to remove the mole. If she still rubs me the wrong way I'm calling my insurance and switching. That's how bad I didn't like her. And she set up an appointment for counseling. I'll try it. I don't like counseling either. It scares me. Especially considering I have all these problems and have heard for years it's all in my head.

I don't know. Oh and I mentioned the pain I've had for years which I hated doing. You read all these medical blogs about drug seekers and I already have this instant mistrust that doctors won't believe me because of, you know, the 13 years of having no one believe me. And because all my conditions I got multiple doctors telling me the vast multitude of tests were either normal or caused by something easy AND only doing "last resort" tests when I pushed and insisted. And what do you know. It was those last resort tests that found the NCS and Narcolepsy.

But I'm always in pain. My back, upper, middle and lower. My neck. (I was in 2 car wrecks several years apart that did some damage and saw a chiropractor) My legs occasionally, ankles sprain/twist easy. My left foot has bothered me periodically since I broke it as a teen. My arms hurt, I can pop my elbows just by extending my arm. My fingers hurt and pop (so does my back and neck). Not to mention migraines. I'm in near constant pain. Often in multiple places. I don't want narcotics, hell I don't want some of the little stuff. I took ibuprofen yesterday because my upper back between my shoulder blades and lower back was killing me. Regular strength. 2 of them. I could have taken at least double (I've taken 1000 mg or 5 regular strength for a migraine). I don't like taking all these pills. The only reason I'm not skipping the Atenolol and Midodrine is because I NEED it and the birth control is because it'd be down right dangerous for me to get pregnant as sick as I am and on these meds and whatever they're going to put me on.

I rarely go to the ER or doctor for pain. I've been to the ER TWICE for a migraine that lasted DAYS and would NOT go away no matter what I did (I know, not an emergency but by the time I gave up trying it was Friday night and I'd have gone postal if I waited until Monday). I've also never been for regular pain. The car wrecks I went for the car wreck and don't even remember if I got anything, the only thing I remember was the chiropractor. The migraine (one) I got a shot. I don't even know what it was called but that shot knocked me out ALL. FREAKING. WEEKEND. I've complained of back pain ONCE at the ER but not primary complaint. I had bronchitis AND walking pneumonia to the point I was gasping for air and coughing up a lung (again, not really an emergency and I wouldn't have gone except it was night, I layed down to sleep and couldn't breathe and started gasping for air). The coughing irritated my back. I got some medicine with a T which I quit taking after like 2 days because either the narcolepsy gave me hallucinations of my bed shaking (which my primary said was ANXIETY) or it gave me tremors. I'm not sure (and this was 2010 so way before I had any diagnosis) but whenever I'd wake up I'd have the feeling that my bed was shaking. It scared the crap out of me and of course I read all the print outs and the side effects of it and the cough meds they gave me said those side effects were common so I quit that too (high strength cough medicine) and switched to tylenol cold. And suffered for a month. All of this has been over YEARS, dating back to when my mom was pregnant with Big D (1st car wreck she was a couple months pregnant) and he'll be 14 in November. I've never asked for drugs, I don't take anything unless I'm in absolutely agony and can't function. I want to know what's causing this pain and how to ease it. I carry a stick of mentholated stuff (kind of like icy hot?) in my purse to help take a little edge off (doesn't take the pain but it helps a little bit). I take hot baths and soak my muscles. I beg Big Daddy for massages and I only take OTC meds when I can't get any relief and can't handle it. I hate drug addicts and would rather suffer than risk becoming one but it's constant and like all my other problems, I want to freaking know why.

She gave me a look and said next time we'd talk about x-rays "or something" but that I was already on "so much". Nothing for pain, no kind of narcotic, no sedatives or any of that stuff. I'm on Atenolol, Midodrine, Prilosec and birth control. (And prescribed an antidepressant that I'm not taking). I don't even want to take that because I'm afraid how it will affect me (even if I didn't have everything else). I just want the pain to stop, to know why, I want to other issues to go away. I'm fast becoming completely fed up with my health. Ugh.

Not to mention, I slept 12 hours yesterday and had a migraine. I guess almost passing out at Walmart drained me. Big Daddy keeps saying "NOW do you think you need an electric cart?!" Yes but not happening. "I'm asking your doctors." I'm 23 for fricks sake. It's embarrassing. And I haven't publicly mentioned narcolepsy except to a "secret" group on facebook and to a handful of people in my life. I know people will automatically assume the same thing I did (which is cataplexy but not many people realize narcolepsy doesn't always mean falling asleep and losing muscle tone like that - that's narcolepsy WITH cataplexy) and I'm embarrassed. And Big Daddy keeps making little jokes so hell no I'm not posting it on facebook. Yet.

Oh and the woman at the sleep center told me to get a medical bracelet/necklace for the narcolepsy. I was going to ask my EP if I should, now I'll just ask him what ELSE I should put. She also told me to get some kind of alarm since I'm always home, usually alone (no adults just me and kids) or ALWAYS keep my phone on me (which I do, Big Daddy got some pointed looks from me on this part of the conversation) or the key fob so I could trigger the alarm if I needed help (and have a neighbor know that it meant that). Ok more later. It's 2 AM+ and JSmiley is only mildly entertaining the thought of sleep.