I've tried writing this post three times now; let's see if I can get this to come out right.
After my success with getting the
struts and shocks replaced on my van--a major achievement for me--2 days later I was suicidal.
I had woken up to a dental emergency, and after over 3 hours straight of phone calls on a Thursday late morning/afternoon I was unable to get through to any dentist whatsoever (not even their emergency lines), nor my therapist, nor my case manager, nor my doctor. I used up the last of my allotted 500 minutes for the month (less than an hour of that had been leisure calls) and had to buy another 100 minutes, which got kerfuffled in and of itself.
When people finally began getting back to me, the news wasn't good. Very few dentists take my insurance, and even fewer, regardless of insurance, are safe to take my mask off in. In fact, there's no way to be certain of preventing anaphyaxis, it's just a matter of taking as many precautions as possible and hoping for the best. I've encountered several dentists who flat-out refuse to treat me because of it. This is why my dental health has deteriorated to multiple chronic abscesses I've lived with for 8+months. One of them had gone out of control and that side of my face was swollen and painful. I knew I needed to go in immediately.
It wasn't until the end of the day that some progress finally began to be made. My doctor, who's a powerhouse of a woman playing a gigantic part in saving my life lately, managed to get through to a local university's dentistry program, and an appointment was made to see me the next day. Meanwhile I was seen by a different doctor, who questioned whether I had an abscess at all. Because they doubted it, they would not prescribe antibiotics (which would take several days to custom compound) but instead tried to get me to purchase mild herbal things that would help a little "if there was any infection." Once I managed to pin them down about it basically just being a measure to help me psychologically feel like an infection was being treated I flat out told them that I cannot afford the $14 that costs, as it's much of my medical budget for that month. My PTSD of doctors not believing serious issues was triggered. I spent the rest of the evening working hard at keeping myself sane and present rather than in the PTSD flashbacks.
The next morning, I saw a wonderful student dentist who did an excellent job handling my complex case, took x-rays and confirmed that I definitely have an abscess. I was already resigned to extraction...I had consulted my MCS specialist at length a few months ago about root canals vs. extraction and his strong recommendation was the latter. Besides, I've been through this with another tooth before, and while I generally fight hard for my teeth there comes a point at which I can literally feel it's time to let them go. Like putting down a pet. There's that turning point where it goes from a part of my body I'm attempting to rescue, to one I'm attempting to protect myself from. It had reached that point Thursday morning, so when the dentist independently reached the recommendation of extraction I simply breathed a sigh of relief that I didn't have to explain to them why, even at such a young age, I feel it's better to lose the tooth than do a root canal.
Unfortunately it couldn't be done that day. If I was a regular patient it would have occurred on the spot, but the office was not prepared to handle a patient of my complexity. So they referred me upward to their advanced program....where the earliest opening was Wednesday, 5 days away. Tried to get in sooner, couldn't. Later called another place recommended, they had no sooner openings either. The dentist advised I call my PCP to get antibiotics in the meantime, since the abscess is an active infection.
What followed--after the parking ticket the front desk had assured me would not happen when I inquired on parking--was another day of nonstop phone calls. And needing to purcahse another 100 minutes. I'd had severe reactions to antibiotics over a decade ago, but the specifics had never made it on to my records. I got my mom to help me in the search and there were so many calls to so many offices, who had since merged with other offices or the pharmacy went out of business or the records system had been changed and data had been lost. Still haven't got all the info, but once we stumbled upon one name of an antibiotic I hadn't reacted to 13 years ago we had something my PCP could prescribe. Even though it'd take a few days, at least I'd have it then.
She prescribed it, and as we spoke on the phone, she explained it was for prophylaxis to be taken just prior to the procedure. I explained how the dentist told me that I have an active infection and recommended antibiotics for it to be taken immediately. She was skeptical. I explained how x-rays had been taken which definitively confirm an abscess, and how the dentist had explained the bones in my face were swelling because the infection had nowhere to go. She finally believed me (what's up with that??) and so I should finally get the antibiotics on Monday. Nearly all prescribed medications must be compounded before I get them, which means the drug is made specifically for me using just the active ingredient(s) and fillers that don't cause me problems. This takes a few days, and with the weekend it's even longer.
My boyfriend and I hold each other at night and whisper our fears about the procedure. It is life-threatening to me, something that wouldn't typically be for other people. We're scared and want to be on the other side of it already. The good news is, if all goes well then this will be a good place to get the rest of my teeth taken care of too. I haven't had my teeth fully taken care of in over a decade. I haven't been able to chew on all sides of my mouth for about 7 years. Despite the trepidation, there's a lot of hope that it could all be for the best.
Something I haven't yet mentioned is that contributing tot he entire ordeal was the fact that my van setup was complete chaos. I'd had to remove most of my setup for the mechanics to access the rear shocks, including removing the electrical panel from the wall. The day after I was completely exhausted and only had a few hours of daylight to haphazardly throw everything into my van, without attempting to set it up to be livable. I had a small area of the floor where I put my thermarest and could sleep, with stuff crowding around me, stacked up high beside me and falling down on me as I slept. It was the next morning that I woke to a dental emergency. So while all this is going on I had no comfortable bed or organized access to anything. I also discovered that day that my new backup camera is non-operational, even though it was upon leaving the mechanics. I'm pretty certain a wire got pinched somewhere in tossing all the stuff in but haven't had a look at it yet.
Those 48 hours were awful. Last night and today I was able to do a lot of the things my PCP (a naturopath) was recommending and am feeling a lot better. It coincides with a 36-hours housesitting opportunity, and it was a sunny day, and I got enough sleep at my boyfriend's family's place (even though my eyes swelled up and voice goes hoarse from MCS reactions) so I was able to pull everything out of the van, clean it up a bit, reattach the electrical panel, and I'm almost finished with having the setup complete once more. I even managed to grab pictures along the way so I could update my thread!
When these severe turns happen, it's really hard for me to keep out of the mindset of "life is ALWAYS this bad. Never a break. Something awful is most likely lurking around the next corner." Being able to get my van organized again in gorgeous sunshine and clean air so I didn't have to wear my mask went a long way towards helping me feel like life can be good again, too.
I'm still struggling at times. Of all the ridiculous medical extremes I've survived and inhumane suffering I've endured for years on end, dental issues are the only thing that palpably zaps my will to live. So here's hoping the next few days will be more like today in actually making headway towards solutions so I can feel good about the future. Still many more phone calls to make and logistics to sort out, because I'm still trying to find a way out of that parking ticket they assured me up and down wouldn't happen (now they're saying it'll only be $15 instead of $40, but even that is unclear) and there's no parking close enough. My case manager is on the task for finding out about ADA parking for me for Wednesday.
Meanwhile I picked up a different prescription yesterday from the pharmacy, calling them from the parking lot for the third time: "I've got no access, I'm parked a couple blocks away and cannot get you to pick up my medication, what do you suggest?" And again, though they keep very sternly warning me that they really can't do this, they ran the meds out to my van. Because even though there's handicapped parking right in front of their door, you have to pay to park there and I tell them I simply cannot afford it. My case manager made a bunch of calls and wasn't able to find a solution to that one. I live with the fear that one day they will follow through and put their foot down. It is the only compounding pharmacy in the area covered by my insurance. If that happens, I'm no longer able to get medications. Which is how I was living up until about 4 months ago.
So there is progress, and there are good things, but life is still ridiculously hard. Today was a good day, and I wanted to be able to share the recent events in light of a good day.
