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ok, this really sucks.

Journal Entry: Sat Aug 16, 2014, 1:57 PM

Some of you may know that I had severe back issues for about 10 years, finally resulting in my being bedridden for six months before finally finding my old chiropracter who got me fixed in three visits, about six weeks ago I was able to get up and about again. 

Around the same time my back got really bad, I had to switch to hormonal birth control from a copper IUD (it's effective time expired) while we waited for health  insurance to kick in. I know that's a bit TMI but I promise, it's important. 

I visited a doctor for the first time in 10 years in May. My heart rate was high and resperation was fast and shallow, I was unable to take deep breaths. I don't know what my heart rate was, but it's normally in mid-range at 68-72 beats a minute. I complained of complete exaustion and, when asked if I was sick at the time, told them I felt so bad all the time I honestly didn't know.  The doctor said I had a slightly irregular heartbeat that speeds up when I breathe in and drops when I breathe out, which is slightly abnormal but not a problem. 

I was in extreme pain at the time, which can cause fast heart rate and respiration. But I'd also been in pain for so long that I generally try to do slow deep breaths. 

My dog started acting funny about three or four months ago. She was whining constantly, very worried, hiding under things. I now realize she was trying very hard to tell me that something was wrong. 

Like I said, I found my awesome chiropracter again and he fixed me up. He expressed concern about my heart rate, which was incredibly irregular, bouncing from 78-106 at random intervals. After three visits, he corrected the very bqd back problem that had been causing me crippling pain.

I was doing pretty good, though my heart rate and resperation were still higher than normal my pain level was way down and I was active again. 

Two and a half weeks ago or so, I started feeling really run-down, super low energy, and having mild to moderate chest pain. I figured it was some sort of summer bug and ignored it for four days, until I finally mentioned ot to my husband who said I should either set up an appointment with the doctor or go to the emergency room. I thought the ER was a bit overkill, but I called the doctors office. They told me to go to the ER. After a bit of convincing from my husband, I agreed to go. 

They took a chest x-ray and drew some blood. The x-ray looked ok but the blood work showed elevated levels of the chemical that indicates clotting, so they did a CT scan of my chest. 

The CT showed multiple blood clots in my lungs (pulmonary emboli). This is a conditon that is often fatal- one out of four cases is diagnosed in autopsy since the only 'symptom' is frequently sudden death. 

A pulmonary embolism starts off as a blood clot in another part of the body, usually a deep vein in the leg, breaks free and travels through the system until it reaches the small veins in the lungs where it becomes lodged, cutting off blood flow and causing that part of the lung to die. The death of lung tissue results in oxygen not being able to pass into the blood stream.

Two of the major non-genetic causes of these blood clots are hormonal birth control and an extended period of inactivity. 

They started me on anti-coagulants and admitted me to the main part of the hospital, where I stayed for several days. I'll be on anti-coagulants for at least six months, more likely a year. 

I was given the choice of warfarin sodium or Xarelto (rivaroxaban). I decided to go with warfarin, even though it has diet restrictions and requires frequent monitoring of clotting time and dose adjustments it is cheaper, generally safer, and can be reversed with a shot of vitamin K if I get in an accident or start bleeding (Xarelto cannot be reversed so the only option if I started to bleed uncontrolably would be to give me transfusions for at least 12 hours while it got out of my system, there is at least one lawsuit against the manifacturers for internal bleeding, and it's expensive). 

Warfarin takes about 7 days to really start working, during which time one has to take enoxaparin sodium injections. The doctor at the hospital said I could stay there until the warfarin started working, or if I didn't mind doing my own injections I could go home. I've never had to give myself injections, but I don't mind needles and I've given hundreds of injections to horses, so there wasn't any reason for me not to come home.

I was released a little over a week ago, and my blood test this morning indicated that I could stop the injections (the needle poke doesn't bother me, but the med really stings going in and hurts for about ten minutes, so that wasn't fun.)

I'll be having my blood tested once or twice a week for awhile, when the clotting time is stable where they want it I'll go every two weeks, then once a month, etc. 

Day before yesterday, I developed a severe headache-migraine may be a better term. I almost never get headaches, when I do they are mild and in the front of my head, and usually go away with some water. This one was in the back of my head clear through to the front left side of my face. I managed to deal with it from 5pm to midnight, fell asleep, woke up at 2:30 am with it worse than before. The warfarin instructions say to call 911 or go to the ER with a severe or unusual headache as it can indicate bleeding into the brain. They gave me IV painkillers and did a CT scan of my head to check for bleeding, it came back OK so they gave me a prescription for painkillers and antiemetics (can't risk throwing up the warfarin) and sent me home. Since the headache hasn't returned it was probably just due to extreme stress. 
 
So now I'm dealing with recovery from the pulmonary embolisms. Unfortunately, this isn't a situation where someone gets out of the hospital with some medicine and immediately goes back to normal activities. Medicine that actually destroys blood clots is dangerous and they generally don't give it unless they absolutely have to, so the clots will remain in my lungs until my body breaks them down. Nobody can tell exactly how long that will take, since everyone is different, It usually takes several weeks to months for the clots to be broken down and tissue to start healing. If there is no permanant damage, I should be pretty normal in a year or two. 

Until then, I'm going to keep having physical symptoms like fatigue and chest pain, low endurance, and will be more likely to get chest infections. 

Right now, I'm getting pretty frequent stabbing pains in various places around my chest and ribcage, they only last a second or two. I also get achey pain in the center or left of my chest on and off, which comes on or gets worse whenever my heart rate goes up.  I've had a mild almost-headache on and off for most of today and my stomache has been slightly icky, but then again my normal response to stress is to "go off my feed" as we say in the horse business, I've been making myself eat as normally as possible since diet is a big factor in the way the medicine works. 

I still feel pretty bad. The physical issues are bad enough, but it's also mentally crippling. Every little pain sets me on edge now, wondering if it is normal or if I'll wind up in the hospital again. The medicine will keep new clots from forming, but I still worry that there may be more in my veins somewhere that could break free and lodge in my heart and kill me. 

My heart rate is not great, it's still very high since I'm still not getting enough oxygen through my blocked and damaged lungs. Any little thing that causes even minor excitement- even the phone ringing- makes it jump up super high and my chest pains get worse. 

My family is trying to help out, but they aren't super effective. My mother is willing to do things for me, but being around her has ways been very stressful, and often her idea of 'helping' is trying to boss me around. My dad keeps saying he wnts to help out and keep my strress down, he lives on the property, but he's alcoholic and tends to start drinking in the early afternoon, rendering him useless. I asked him to at least not start drinking until 6pm when my mother (who lives across the street) gets home. Which he did for one day, but yesterday I found him drinking again at around 2pm, I got a bit upset and pointed out he'd agreed not to drink until later, but he just said 'well, that was yesterday', so pretty much if I want him to be sober I'm going to have to sit up at the studio and babysit him, which I don't have the energy to do. I dodn't even bother trying to discuss it with him yesterday since he wouldn't remember, anyway. My brother also lives on the property, bit the two times I have asked him to do very minor things for me he's gotten all huffy and actd like it was a big deal (oh, I'm sorry, is my LIFE THREATNIG CONDITION a slight inconvenience to you?). 

Basically the only person I feel like I can count on at all is my husband, who went back to work a few days ago- he took a week off and even though he can have up to 3 months of medical leave for a family member it's not paid and we have only his paycheck for income, so he couldn't stay out any longer. 

He's forbidden me from looking at any of the hospital bills or insurance stuff. There's nothing I can do about any of that and I don't need the stress of worrying about how we will pay for it. Even with insurance it's going to be very expensive.

Now I have an added worry about birth control. On this medicine, I absolutely must not get pregnant. The meds cause deformations and complications. Not that I want another kid, anyway. 

Hormonal methods are flat out for me- ever. Which is fine since they cause me depression and other issues (aside from messing up my clotting factors and trying to kill me).  Basically, the only thing I can use now are barrier methods- which have way to high of a failure rate- or a copper IUD. I had a copper IUD for ten years and it was great, so I need another one put in. Our insurance is incredibly crappy, though we didn't know that when we signed up. The say they cover the copper device, but they've lied to us several times before, and my gynecologist is worried that they won't pay him at minimum what it costs him to buy the device. He put in a request for authorization but I haven't heard back from him either way. I tried calling him on Friday and didn't get a response, Monday I may have to just repeatedly call the office until someone answers. More stress I don't need. 

 Which means I may have to rely on our local health department, which means we will have to pay for the services out of pocket. The cost is reduced for us but not free, and they insist that I pay for a pelvic exam and disease/infection test that I don't need, having had both in the past two months, but they say they have to do it again. If I have to go through them it's going to be a long wait, at least two weeks for the first appointment, two weeks to get the results from the unneccisary tests (which actually only take three days to process), then they'll have to send me to a different health department to get the device put in which will be another 2-6 week wait, which of course they won't try to schedule until the tests come back. And they botched my paperwork when I went in earlier this year which means I may have to resubmit all of the financial crap, and since my husband gets a few good paychecks this time of year if they want those instead of tax returns it's going to put us at a different income level which means I'll have to pay more. Overall going through the health department would cost us a minimum of $160 if they don't change our income level. That might not seem like all that much, but we really don't have extra money. My mom has offered to pay for it, which is nice but means that appointments will have to be scheduled around when she has the money, which is going to be even more of a pain. 

And all that is assuming that the people at the health department are even willing to touch me, apparently some doctors won't do a copper IUD for a woman on blood thinners since it can cause heavier periods in some and they don't want to be lible for a woman bleeding out. 

The physical and mental stress of all of this is horrible. I feel useless, and like I'm a crappy mother. It's not just that I'm incapacitated right now, it's that I was for so long before, started to get better, and now am again. 

I am an incredibly independant person, and right now that has been stripped away from me. I had to drive to an appointment the other day and then take my daughter to her school openhouse, and after that I was so tired and sick feeling that even after taking a several hour nap I had to call my mother and ask her to come over and wash a few dishes for me so I could make dinner. Even at my most crippled, I've never needed to ask for help with anything other than lifting something heavy. 

I am the kind of person who will relentlessly work through pain. I broke horses for 15 years. I would take 10-20 mile walks every day with back and knee pain so bad I had to use a back support and cane. 

This is different. This is not bruised bones, torn and sore muscles, and messed up joints. This is "walk around the block with the dog and have severe chest pains and dizzyness by the time I'm home". This is "take a hot shower and almost pass out". I am under orders not to push myself, period, which is very hard for me to do- but if I do it's not just going to not help me get better, it's going to make things worse. 



The medication, too has left me much more vulnerable than I am used to. If I hit my head, fall hard, or get in even a minor car wreck I'll have to ho to the hospital since it can cause internal bleeding. If I get a minor cut it will take up to 20 minites to stop bleeding, and if it doesn't I have to go to the er. Large cuts mean the er, period, no waiting to see if it will stop. Minor imacts cause bruises, and I have to check for any unexplained bruising constantly since that means internal bleeding (and I am not a graceful person at the best of times).

My dog has stopped the whining for the most part, she still makes a little noise once in a while. She's gone back to sleeping on the livingroom carpet. I think if ae ever starts acting like that again I'm going to take the hint and go to the hospital. 

The doctor who monitors my blood said I should start feeling a little better in another couple of weeks, when the blood clots that are blocking my lungs from absorbing oxygen will start to be broken down. How long it will take to fully recover is unknown, best guess is a minimum of three months to a year, depending on how much damage was done. 

I was expressing my frustration and useles feelings to my husband yesterday. He looked over and said "You almost died. You do realize that,.right?"

Yeah, I know that. Intelectually, at least. But I've almost died- well, almost been killed- many times. The thought "Oh shit, I'm gonna die" Is not new or unfamiliar. 

That thought really didn't enter my head through all of this. I felt/feel really bad, yes, but not overtly threatened like I'm used to. Which I guess is the problem. This isn't something in front of me that I can physically face and challenge.

And my chicken died yesterday morning. 

Ok, I'm just rambling at this point. It's taken me three days to get this post together. I'm tired and I'm getting a headache, and my lungs hurt. I think I'm going to find something to eat and watch some Doctor Who. 









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