Out of commission

Public Service Announcement - it's a bad idea to ignore symptoms because you're annoyed at medical professionals.  I apparently did too much of that.  I'm off to the hospital for a while, so updates will be on hold for a bit.

I did my part

This is for all the ER docs and nurses reading this blog (if there are any). When I was in the ER, I behaved well. I tried to be as polite as possible to everyone that came into my room. I only described the pain when asked, made no complaints, and didn't ask for a thing. I apologized profusely when the EEG wouldn't work because my muscles are clenching and twitching too much for an accurate reading. I smiled and said please and thank you whenever I could. I also refused the pills and prescription they gave me on discharge.

My ER experience may have been the one of the more unpleasant things I've ever done, but I've taken the blogs I read to heart, and tried to behave in the way you've requested patients act. It didn't really make any difference to the way I was treated, but at least I can be fairly confident I won't be making a featured appearance in a blog post.

A few updates

Well, this weekend was one of "those" weekends. I managed to land myself in the ER Thursday night, for the first time related to pain. It wasn't quite normal pain though, I started experiencing sharp, excruciating, and unrelenting pain just underneath my ribcage on my left side. I called my doctor after about an hour, and he had me go to the ER thinking it could be a heart or lung issue. I thought it was more in the abdominal area, but I was panicking and scared and went anyway. After an EEG and a contrast CT, they figured out it wasn't my heart or lungs. So I got written off as a drug seeker and parked in between the homeless people passed out from a night of alcohol and left for 6 hours. Not the most fun.

Now I'm still experiencing the pain intermittantly, along with some blood coming from somewhere inside, but I'm not going do anything about it right now. If it's a small tear or something, it will heal on it's own. If it's cancer, I wouldn't get treatment anyway. If I start feeling shocky, then I'll call my doctor. Until then...

So after doing all of that Thursday/Friday, I decided to have some fun over the weekend. I went out to a minor league baseball game, which was a ton of fun - no one goes to single A games, and there's no security, so you can basically hang out with the ballplayers. It's even better when you're on the visitors side. Then I went out to dinner afterwards. I spent some money on that, but I needed something to get my mind off of things. I'm also going to get a haircut next week, which is a fairly major expense, but I only do it every six months.

I move into the new place next weekend, so I'll have to start thinking about how to make the space my own.

More on concierge medicine

As regular readers know, I'm extremely happy with my new doctor and the concierge medicine program. It's worth every penny of the monthly fee ($125). Recently, he referred me to an orthopedist; I have an appointment at the end of the month. I made the appointment, let my doctor know, and he took the initiative to call up the orthopedist to have a lengthy, in-depth discussion about my health concerns and his goals for the appointment. Now I feel as though I can go into the office and spend the time talking about management options instead of having to go through the history.

Similarly, he sends me a copy of my medical records whenever they're updated. He made a point of noting in them that I displayed no drug-seeking behaviour. One of my biggest frustrations was feeling like I had to clear that hurdle with every specialist I saw, and I think having the notation in my chart will be a big help. It was done spontaneously too, I made no special requests.

If I were perfectly healthy, I wouldn't see this as a needed expense. But $125/month is a minor expense if it makes me feel not quite so alone in facing down my condition.

Why I love concierge medicine

I had my physical done on Thursday, and came away with some new medications to try. Today, my doctor called with my lab results, even though there was nothing surprising on them. Then we discussed some additional thoughts I had on medications, and he offered to send me a new prescription. Maybe the most interesting thing, however, was that he expressed concern over how quickly my ankles have deteriorated recently and had done some research on the best specialist for me to see. The specialist he found is the foot/ankle consultant for the local NFL and MLB teams and a pioneer of new technologies and research in his area. I've never had a doctor be quite so conscientious about following up and following through.

Pain

Days like this are difficult. The pain is nearly blinding in it's intensity. These are the days that I try to avoid drinking much, so that I don't need to go to the bathroom...when I finally do need to go, I put it off as long as is humanly possible because it hurts so much to get up and walk the few feet to get there.

The idea of going to the ER for pain meds amuses me, in a dark sort of way. I'd much rather sit in a comfortable chair at home, trying not to scream from the pain, than sit in an uncomfortable chair in the ER trying not to scream from the pain, all for a few pills. I'm not sure any pills could touch this pain anyway, though I wouldn't mind something that could just knock me unconscious for a while. I'm sure my doctor would be happy to prescribe more medications, but the mere thought of the effort it would take to actually go into the office sends spasms through my body.

Drug reactions

I've been taking my new prescriptions for a couple of weeks now. I'm not sure any of them are working out very well. I actually stopped taking Lyrica entirely - every time I take it, I get the hiccups for 5 or 6 hours, plus vomiting for 12 or so. Pretty bad side effects for a completely ineffective drug. The oxycontin does take the edge off the day to day pain (my Guitar Hero skills have improved on it!) but does very little, if anything, for the "breakthrough" pain. It hasn't had many side effects though, mostly just a little bit of itching. The trazadone...this one is weird. I'm supposed to be taking it for sleep, but it doesn't help me get to sleep. In fact, since I've been taking it, I've slept a lot worse. I get really, really sleepy, but can't actually descend all the way down into sleep, so I lie awake for several hours in a haze.

I'm going to try to get back into the doctor's office next week, so we'll see what his thoughts are.

A pleasant phone call with a doctor

I started my new prescriptions on Monday night. Throughout the night and all day Tuesday, I was plagued with hiccups and couldn't keep anything down. I called my doctor on Tuesday afternoon, and it was the first time I can remember that I was immediately able to speak with the doctor instead of leaving a message. He seemed genuinely pleased that I was calling him to discuss something that had come up.

So yet again, I'm pleased with the way this has gone so far.

The verdict on my new concierge doctor

I had my first medical appointment with the concierge doctor today. I have to say, I'm feeling very good about that expense. When I walked in, it was immediately clear that he remembered me, remembered our discussion, and had spent time before my appointment doing research on my condition. That impressed me a lot - not only did I see him for an hour, but he took his own time to make sure that the hour we had would be productive. He repeatedly emphasized that the treatment program would be *our* decisions, not just him passing down judgments from on high. I walked out feeling like he truly is interested in making a difference in my life, which is a great feeling to have.

He performed a physical exam (though not the annual physical covered by the program, we'll do that in a few weeks) and blood/urine labs. He sent me home with trazodone for sleep, lyrica and oxycontin for pain, and a handful of free samples of rozeram (a sleeping pill) to evaluate and use as needed. This isn't expected to be the final solution, but hopefully it will make for a good starting point. We also agreed to focus specifically on my jaws and ankles at the moment, as those are the two joints that are most affecting my quality of life (my jaws severely limit what and when I can eat, my ankles cause a lot of pretty bad falls.) He's going to look into what specialists I should see for those.

I don't think concierge medicine necessarily makes sense for everyone, but I think this was the right decision for me.

Pain Scales

WhiteCoat Rants has a post discussing the 1-10 scale that doctors use to gauge a patient's pain. He discusses the different ways that doctors attempt to convey level 10 pain. Personally, I've found that patients need to be proactive as well in communicating what they mean with a specific number. Chronic pain is different from acute pain and individuals experience pain differently, so patients and doctors don't need to add miscommunication to the mix when treating pain. I tend to describe pain in terms of how it affects my daily life.

0 - no pain
1 - small, ignorable pain
2 - pain noticable when aggravated
3 - pain only noticable when I'm paying attention to it
4 - noticable pain, but I forget about it when I concentrate
5 - I fight to focus through the pain, but win
6 - I fight to focus through the pain, but begin to lose
7 - pain is the major focus, but I can accomplish things with effort
8 - Accomplishing basic tasks becomes difficult (i.e., going to the bathroom)
9 - unable to perform basic tasks without major problems
10 - unable to do anything, entirely consumed by pain

Many of the commenters referred to a "10" pain as being labor/childbirth without anesthesia...I had back labor with no medication whatsoever, and it would be a real choice for me to decide whether to undergo that again or to suffer my current level of pain. Chronic and acute pains are very different.

I haven't been below a 4 in over a decade, but my goal in seeing doctors is to have 4 be my day-to-day average.

Doctor shopping, of sorts

Yesterday I had an "interview" meeting with a new doctor. This doctor is affiliated with the concierge medicine trend. Essentially, I would pay $1500 annually, and, in turn, I see a doctor who is limited to 600 patients (down from the 2,800 he had before) with 24 hour, 7 day a week accessibility. Plus, he would manage my care across all specialists, which, when you have a chronic disease, is something incredibly valuable. They also include a detailed physical, full lab work, etc., but I'm not placing a priority on that.

I arrived around 1:45 pm for a 2 pm appointment and was immediately taken from the public waiting room to a private waiting room. The doctor came in right on time (a first!) and we spoke for about 45 minutes. I really liked him, surprisingly enough. He's not inclined recommend homeopathic medicine, he understands that patients don't particularly want to feel like a freak show, to be paraded around for everyone's interest, and is interested in establishing a long term relationship with a two way street of communication.

Long story short, I think I'm going to sign up. It's an expense I didn't particularly want, but one that I think will make a huge difference in the quality of my life.

Some health thoughts

WhiteCoat Rants was kind enough to link back to my site based on a comment I made on one of his posts. It's refreshing to see doctors like him, ones who sincerely care about their patients and do what they can to respond to their patients' concerns, even when they have nagging doubts. Between that and the comments on my last post, I'm not giving up on my search for a doctor just yet.

So with that bit of inspiration, today I set up an "interview" of sorts set up for a new doctor for next Wednesday. He's part of the "concierge" medicine trend, where I'll pay an annual fee but get 24 hour access for him to essentially manage my entire care. The initial meeting will be free, and won't be a diagnostic or treatment session, but will hopefully allow me to explain my condition, what I'm hoping for in terms of treatment, and see if this is an appropriate choice. $1,500/year is quite a bit, but I'm rather desperate at this point. If he turns out the way the last appointment turned out, at least I won't have spent any money for it.

I'm not looking for drugs, really!

I'm not a good patient. I know this. I have an insanely rare, genetic, congential disorder. It's not curable. It brings along a whole host of secondary conditions, most of them degenerative. I have chronic pain. I'm young enough that joint replacement surgery is a bad idea, I've got enough problems that surgery is it's own problem, and yet my joints are mostly destroyed. But still, finding a doctor shouldn't be this hard.



I stopped seeing doctors regularly about a year and a half ago. I was frustrated, depressed, and they weren't helping, so I just stopped going. Then I got pregnant, and I went to my ob/gyn for that, but wasn't doing anything for my own problems. But now I'm finding that I won't be able to continue to function if I don't take care of my own health, so I'm in the market for a doctor who can help me manage my joint issues, my chronic pain, and whatever else happens to pop up.



I'm finding though that doctors are falling into one of three camps. The first won't see me because I'm too complicated. The second only wants to prescribe the drug du jour, regardless of it's efficacy. The third kind assumes I'm just a drug seeker because I'm in pain and would like to manage that pain.



I don't have unrealistic expectations. I don't expect to be pain free. I haven't been pain free since I was 12, I wouldn't know what it felt like. But I don't think I fit the profile of a drug seeker - I've not taken any prescription drugs in over a year, I voluntarily quit methadone and oxycontin because of the side effects, I've never gone doctor shopping to get more drugs, etc.



Beyond all that, though, my experience is that people who will decide that I'm drug-seeking before ever meeting me demonstrate a worse problem. In my last visit, the doctor informs me the minute I walk in that she doesn't believe in drugs for pain. I'm fine with that, if she can offer me non-pharmacological relief, that's fantastic. She repeats this several times throughout the visit. At the end of it...she writes me out two prescriptions. One is for an extremely mild narcotic, one is for a drug that won't address my real problem and is a drug I've already taken before and had a bad reaction to (and I discussed this with her!) So for all her self-congratulating speech on not using drugs for pain, her only solution is for drugs that won't do anything for me. Great. I paid $495 for that visit. I didn't even bother to fill the prescriptions.



I have an appointment with another doctor on the 13th. Maybe eventually I'll find one. In the meantime, I'll take those prescription forms to the new offices, invite them to call the prescribing doctor, and hope they'll believe that I'm not looking for more pills. I just want help.

Debt versus Pain

Dealing with chronic pain is an area that seeps over into all aspects of my life. Tonight, my living arrangements are the problem. I'm renting a basement in a townhouse. It's $650 a month and right on the bus stop, which is about 2/3s the cost of what everything else in the area is. The problem is that my landlord doesn't like keeping the heat on. I've talked to her and asked her to do so, but she turns it off except for a couple of hours in the evening. It's 25 degrees outside and the cold is killing me. I have circulatory issues, so my fingers are currently blue and numb (typing is an experience when you can't feel your hands!) and my joints are on fire.

I don't know that I can afford to move, or that I could find a place that would rent to me if I did do so. But I don't know that I can continue staying here.

A background, part II

I was due to give birth on January 19th.



2 days before Christmas, I noticed that the contractions I had been feeling were stronger and slightly painful. They were irregular though, and subsided after a few hours.



3 days after Christmas, I woke up around 3 AM to go to the bathroom. It was a weird, painful sort of experience, but I didn't think too much of it - pregnancy had been full of weird, painful experiences, so I went back to bed. Around 7:30 AM, I woke up with painful contractions. They were extremely irregular, but fairly strong, so I had a feeling that I wasn't going to make it to my due date. I decided to start getting things ready while I waited for them to come a bit faster and more regularly.



An hour and a half later, I found myself on my hands and knees, calling 911. The contractions were still irregular, but they were extremely painful, and all of the sudden I could feel the baby trying to crown. 10 minutes later, I was being raced to the hospital. My daughter was born as we pulled into the emergency room. The entire process had taken less than two hours.



I was raced into the ER, while they took my daughter up to the NICU. I was in shock, bleeding badly, and surrounded by a whirlwind of activity. I could only get that my daughter was alive, but wasn't doing well, and they weren't sure why.



A few hours later, they had me stable and in a room when I found out more. My daughter was doing very badly - her blood was too acidic, and it was destroying her from the inside. The doctors did everything they could, including flying her to a nearby hospital and trying an experimental treatment. After only 6 short hours of life, they asked me to make the decision to stop treatment. She died only a few minutes afterwards.

A background, part I

I've often started and abandoned blogs, for one reason or another. However, I am determined to get out of the hole I've found myself in, and a place to write about my progress and my setbacks will help hold me accountable to myself. Plus, maybe some others will find this useful.

So what is this hole? 2 years ago, I had a nice apartment, a new car, a good job, and was doing fine. Then I started having health setbacks - fatigue, chronic pain, organ damage. At one point, I slipped into a coma for three days. I lost my job and sank into a deep depression that spiraled out of control fairly quickly. I ended up losing my car and my apartment. I stopped getting medical treatment. I cut off all contact with the outside world, except for living on a friend's couch. I stopped paying my bills, leaving me with $16,000 in debt that ended up going to collection agencies.

For the next year, I lived in sort of a fog, depressed and afraid of both dying and living; most days I wouldn't even get out of bed. When I thought things couldn't get any worse, they did. I was raped by a stranger. I thought I could just ignore it and pretend it never happened.

Unfortunately, that wasn't possible. 4 months later, I discovered that I was pregnant. I looked into abortion, but I was too far along for any doctors around my area to perform the procedure. I had no idea what to do. I spent the next 3 months trying to pretend that nothing was wrong, that I could just go on as before. Finally though, I sat down and took a long look at myself and my life and decided that I wasn't going to just wait around to die any longer.

So I got a job. I moved off of my friend's couch and into my own apartment. I researched placing my child for adoption, selected a family, and completed all of the paperwork. I was well on my way, I thought.