A few days ago, I finally managed to write a sort of general mea culpa blog post about dropping off everyone’s radar back in December. That post was my first significant social activity since putting my GoFundMe around a few times in early January. The blog post explains my radio silence to a degree, but this document does a better job at explaining the recent details.
My ass is being absolutely kicked right now, but for the better. In addition to coping with pudendal neuralgia and working on DASAN, I’ve been hard at work these past two weeks.
On January 14th, I started a new pain management program (for Ehlers Danlos, not for pudendal neuralgia) that includes a new medication (low dose naltrexone), three very small PT exercises that I do at home (and they don’t aggravate my pudendal nerve), and somatic work with a social worker.
On January 16th, I started therapy with a new therapist who is herself disabled. Yes, I’ve mostly been in therapy since I was 14 (and I’m almost 38), but I didn’t receive my official diagnosis of Ehlers Danlos until August of 2017. Prior to that, my therapists were all convinced that my physical health issues were all due to somatic symptom disorder — “all in my head.” For twenty-one years, my experience was invalidated by everyone in my life who had power over me or or who was one of my health providers, so I’m working on some unresolved feelings about that. More importantly, now that I no longer have to spend time trying to convince anyone that I’m disabled (other than Social Security!), I can accept my disabilities and their limitations — because I haven’t. Not at all. I’ve been fighting them all the way and that contributes to what mimics a relapsing and remitting cycle. Self-acceptance is going to be very hard for me. I’ve been trying to live up to a self-imposed supercrip ideal — because that’s how I’ve wanted to live — and letting go of that isn’t going to happen gently overnight.
On January 20th, my PMDD (premenstrual dysphoric disorder) cycle started. I still have my ovaries, so I still have these cycles every month. Despite having experienced PMDD symptoms since around age 12 or so, I was only diagnosed with it in late December. I’m already on one of the medications used as the first line of treatment, and it doesn’t help with the symptoms of PMDD. The next options are hormonal: estrogen and progesterone. I tried those to treat the pudendal neuralgia and had adverse effects, so those are out. That leaves having my ovaries removed, but that’s contraindicated for Ehlers Danlos. So it would seem that I’m stuck with these 3-5 days of PMDD every month. I mention them because they’re not a joke; my mood gets so bad that getting out of bed and communicating with people during those days is a greater challenge than usual.
On January 23th, I was in Baltimore from 9am-4pm for a Medical Functional Evaluation by the State of Maryland’s vocational rehabilitation department. It wiped me out hard. I was told some of the results by phone yesterday (February 1st), but I won’t have the actual report until sometime next week. My counselor at vocational rehab is sending me to do several days of comprehensive career assessment next because she doesn’t think that any jobs/careers exist within the rules of vocational rehabilitation and my limitations. It’s several days long and I get to do it while lying on the floor of the vocational rehab office. Ha.
On January 24th, I spent the day making phone calls and doing research online to try to find out what would happen to my benefits, specifically my housing, during the federal government shutdown. 91% of my apartment’s rent is covered by a Housing Choice Voucher (“Section 8”) which is funded by HUD. HUD doesn’t have an approved 2019 budget and therefore is only funded through the end of February — which means that my rent was only going to get paid through the end of February. I was trying to find out if my landlord can evict me for the housing authority not making its payments and if there’s a plan in place from HUD or my local housing authority. By the evening of January 24th I found out that my landlord can’t evict me for the housing authority not making its payments as long as I continue to make my payments on time and give no other cause for legal eviction. Not until yesterday (February 1st) did I receive any communication from my local housing authority about a plan for the likely next shutdown: the housing authority has an agreement (read: loan) with PNC Bank to guarantee that all Housing Choice Voucher payments from the my local housing authority will be paid in March, April, and May.
On January 25th, my “period” started. This the beginning of what would be my period if I still had my fallopian tubes and uterus. It’s significant because somehow my pudendal neuralgia symptoms are tied to my ovarian cycle (my doctor and I are hypothesizing that this is linked to MCAS — mast cell activation syndrome) and it’s during the days I would have my period that the pudendal neuralgia symptoms are at their worst. I can barely tolerate anything to come into contact with the skin of my vulva during this time, so I try to stay as still as possible — for another 5+ days. With each ovarian cycle since my hysterectomy (and IUD removal) in February of 2018, the length of time that my pudendal neuralgia symptoms are at their worst has expanded. I’m running out of steam in writing this, so rather than explain, here’s a source on mast cells and nerve pain and here’s a source on mast cells and menstrual cycle hormones. This the part that my doctor says we need to get under control because it will eventually be at its worst full-time and not for “just” one third of the month, as it is now.
That brings me up to today, February 2nd. I’ve managed to be awake and upright for about eight hours today, which is fantastic for me for this time of the month! But I’m wiped out, so I’m wrapping this up and heading to bed. For those that bother to read any or all of this, thank you; I know it’s a lot to digest! I appreciate your interest, support, and friendship, and I appreciate all of you. xoxo, Caz
