This was about how I spent my January.

In February, I:

  • met with a pain management social worker who said my coping skills for pain are great and that there’s not much more I can learn to manage it (specialized t’ai chi is the exception);
  • collaborated with a design studio working to accommodate MCI (mild cognitive impairment, which is one of my diagnoses) through accessible design;
  • had my main case manager move out of state in the first few days of the month — and received no word from her agency about her replacement;
  • met with a new rheumatologist; was officially diagnosed with MCAS (mast cell activation syndrome); was put an additional MCAS medication (which hasn’t helped);
  • underwent the sixth overnight sleep study I’ve had so far in my life;
  • experienced some of my GI (gastrointestinal) symptoms getting worse;
  • re-certified my medical cannabis patient status, met with my psychiatrist, had blood work done (two sets), had four therapy sessions, and met with my physical medicine and rehabilitation doctor;
  • found out that the case manager from the agency handling my Social Security application had resigned — and then just a few days later found out that my Social Security application had been denied again;
  • received the results from my blood work: despite being on prescription supplements for months, I’m deficient in vitamins D and B-12, plus I’m rather anemic;
  • received the results from my sleep study: for the first time, the results were normal, which is astounding as I have been diagnosed with multiple sleep disorders and parasomnia; and
  • received the results from January’s Medical Functional Evaluation: complicated and not worth going into just yet.

So far, in March I have:

  • had four therapy appointments (things are getting rough);
  • had the big vulvovaginal/pelvic appointment that the GoFundMe helped fund (more on this later);
  • met with my new overall case manager;
  • submitted my Social Security case appeal;
  • filed my taxes;
  • called my health insurance to get a new HMO case manager (different from my overall case manager) — so far I’ve called twice and haven’t heard back;
  • updated, made several new additions, and majorly reformatted the medical files (current providers, current medications, diagnoses) that I take to every doctor appointment;
  • found out that my GI (gastrointestinal) implant, Linx, was recalled in April of 2018, which would explain the gradual worsening of my GI symptoms over the past several months — my implant has failed, which means it must now be surgically removed, and there is no other surgical option for Ehlers Danlos patients (more on this later);
  • had my laptop start to die — it’s nearly unusable now, so I’m writing this from a loaner that gets returned at the end of the month; and
  • have been scammed to the tune of $2,500+ and I’m exploring legal options, so I can’t go into details on that.

Still to come in March:

  • more therapy; follow-up appointments with my sleep doctor, cardiologist (time for my annual echocardiogram), psychiatrist, and physical medicine and rehabilitation doctor, and an appointment with my gastroenterologist to discuss removing my Linx implant;
  • twelve hours of career assessments with vocational rehabilitation; and
  • fighting my health insurance (Medicaid) for what the long list of things the vulvovaginal doctor confirmed that I need, most of which aren’t covered.

What I learned at the very important vulvovaginal/pelvic appointment:

Not a whole lot new, sadly. Mostly, she confirmed what my other doctors have been saying. I’m rolling what she told me into the below list.

All the upcoming medical things that I have to sort out:

  1. Physical therapy for Ehlers Danlos (2-3x/week) and internal, manual pelvic floor therapy (1-2x/week).
    1. These must be done at the same time so that the hip and core muscles and properly strengthened congruently.
    2. Obstacles: I can’t find a pelvic floor therapist who takes my insurance and will treat me (with pudendal neuralgia). I’m similarly having a difficult time finding a PT with a good understanding of Ehlers Danlos and pudendal neuralgia.
  2. Medications.
    1. Once in pelvic floor therapy, start diazepam suppositories nightly. $100 per month. Possibly covered by insurance with a great deal of fighting.
    2. For MCAS, start Singulair.
    3. For depression and pain, raise dosage of Effexor.
  3. Surgeries (definite).
    1. Gingivial graft, right side (upper and lower). Due to Ehlers Danlos. Not covered by insurance.
    2. Linx implant removal. Due to recall. Covered by manufacturer. (Possible to have hiatal hernia repair at same time?)
  4. Tests.
    1. MRI of cervical and thoracic spine (for herniated discs).
    2. MRI of lumbar, sacrum, and pelvic spine (for pudendal neuralgia).
    3. MRI of brain and orbits (for vision loss in left eye).
  5. Pain management.
    1. Pelvic floor: dilators from Syracuse Medical; (not covered by insurance).
    2. Pelvic floor: intravaginal Botox injections; (not covered by insurance).
    3. Pudendal neuralgia: intravaginal nerve blocks for three months — if they work, for six months; if they don’t help, refer to spinal surgeon (see 6.3, below).
  6. Surgeries (possible).
    1. Left sacroilliac joint infusion. Due to Ehlers Danlos. Need to follow-up with spinal surgeon at Hopkins.
    2. Pudendal neuralgia: MRI of spine might show Tarlov cysts (common with Ehlers Danlos), which can cause pudendal neuralgia, if so, these need to be removed by spinal surgeon.
    3. Pudendal neuralgia: if intravaginal nerve blocks do not help, refer to pudendal neuromodulation implant (may not be covered by insurance).

This has been a full-time job for a long time, but lately it’s felt like more than one.