TL;DR: I have four medical procedures coming up. I also have four surgical procedures coming up. I have a couple of procedures that may lead to additional surgical procedures. I can’t have all of these procedures at once, nor within close time frames to each other as Ehlers-Danlos requires a lot of recovery time. My doctors are telling me that as of now, I’ll have a total of approximately two weeks as an inpatient and at least eleven months of recovery time (not including extra time needed between surgeries).

I am going to be rather incapacitated for at least a year. I live alone and Medicaid will not supply me with a care attendant. I desperately need someone to sign me up with and manage a Meal Train Plus account for me. You don’t have to live near me to manage the account. The site allows people to coordinate meals, rides, visitors, housework, and raise money to meet the needs that volunteers won’t be able to meet (apartment cleaning, meal delivery, taxis, etc.).  [EDIT Feb 24th at 12 PM EST: I’ve found someone to sign up with Meal Train Plus and manage the account. Now I need folks to sign-up with my account to volunteer. If you’re interested in helping out, please contact me and provide your email address so we can invite you to the account.]

Murky Waters

This is not something I want to write but it has to be done. I’ve written a bit about this on Instagram already, but not to the extent needed.

For years, different doctors have told me that I had somatic disorder, that I was a hypochondriac, that I was malingering, that there was no medical explanation for the symptoms that I claimed. I was largely unable to get the care that I needed until a geneticist diagnosed me with hypermobile Ehlers-Danlos syndrome in August of 2017 (at the age of 36). Even with that diagnosis, doctors have demanded that I show them a diagnostic letter from the geneticist or that I do some of the Ehlers-Danlos bendy “tricks” that cause undue stress on bodies with EDS. And I’ve still had doctors blame my psychological health and/or my weight on my symptoms. This is a result of being on Medicaid and mostly only having access to doctors who don’t know anything about Ehlers-Danlos. (Most doctors who know about EDS have gone into private practices where they don’t accept insurance, let alone Medicaid.)

But two months ago, after being referred from specialist to specialist for years, I finally got a referral to a practice that accepts my insurance and not only knows about Ehlers-Danlos, but are leading researchers in certain niches of the condition. 

Clear Waters

Since December, I’ve undergone multiple tests and consultations with the team. Last week, I met with them twice. They have an extensive treatment plan for me. I don’t have dates for everything yet and won’t until things progress, as many require completion and recovery from earlier procedures or to determine what course of action to follow after certain tests or procedures.

  1. I’m having diagnostic sacral nerve blocks to decide if some of the pain I am having is coming from the Tarlov cysts and/or hemangioma found in my sacrum.
    1. Depending on how the diagnostic sacral nerve blocks go, I may need to have my Tarlov cysts and/or hemangioma treated.
  2. I’m having bladder hydrodistension under general anesthesia to determine if I have interstitial cystitis.
    1. If I do, I will need to undergo multiple bladder instillations to find relief from the interstitial cystitis.
  3. I’ve been diagnosed with tethered cord syndrome.
    1. I will be trialing a percutaneous sacral anterior root stimulator for 1 week. If it helps but does not cure, I will be having a neuromodulator permanently implanted.
      1. I’m currently unclear about recovery time for having a permanent neuromodulator implanted.
    2. I will undergo tethered cord surgery (to sever the cord).
      1. Surgery requires a 4-7 day stay in the hospital and then 6 weeks before normal activity can be resumed.
  4. After the above, I’ll be returning to my regular urogynecologist.
    1. I will undergo reconstructive pelvic surgery of my vaginal prolapse, anal prolapse, and bladder prolapse (an anterior and posterior colporrhaphy and an Iliococcygeus fascia suspension with allograft).
      1. Surgery requires a 2-3 days stay in the hospital and then 12 weeks before normal activity can be resumed.
  5. I’ve been diagnosed with craniosacral instability, but I need to have a new MRI to find out how bad it has progressed since the last MRI and to determine if I have cerebrospinal fluid obstruction due to Chiari malformation.
    1. I will be undergoing surgical correction for this.
      1. Surgery requires 7+ days in the hospital and then 6+ months before normal activity can be resumed.
  6. I am also in the process of getting dental surgery approved by Medicaid. I don’t know how long the approval process will take or when the surgery will take place.

Due to having hypermobile Ehlers-Danlos syndrome (hEDS), my recovery times are often longer than “normal.” They are also sometimes complicated by infections, poor reactions to medications, hemiplegic migraines, etc. The above quoted recovery times are for people without connective tissue disorders (hEDS is a connective tissue disorder).

Surgery is generally contraindicated for people with EDS, but my care team assures me that I need these procedures, particularly for the tethered cord and the CCI. If left untreated, CCI can result in being bedridden due to the complete inability to lift one’s head.

My Social Security hearing is on May 15th. Due to a number of factors, I won’t have any back pay coming to me if I’m approved. And even with all these new diagnoses and surgeries and treatments and the revelation that my instance of Ehlers-Danlos isn’t mild at all, I still might not win my SSI case because Social Security has dramatically decreased the number of cases they award.

Stormy Waters

All of this is bringing up some really hard feelings for me about being single and living alone, about having become so isolated due to my increasing disability over the past several years that I no longer have a group of friends or community I can even ask to help me out, and about the very fucked up state of this country’s healthcare and social services systems. I’m still trying to process and I keep stumbling over the words I want to use about all of this. What it comes down to is that I’m fucked, and I’m scared, and I’m going to be incapacitated for a year or more without much assistance.

I need help and I don’t know who to ask or turn to.

I have to put everything on hiatus — again — for more than a year. I might come out feeling drastically better at the end of all of this or I might not. Ehlers-Danlos makes everything into a high stakes gamble with multiple possible complications. I’m scared of what might go wrong and I’m scared to hope that these surgeries will help. I’ve hoped for medical improvement before and every time my hopes have been destroyed, leaving me despondent and depressed.

I’m scared to ask for help not knowing if I’m going to get better or stay the same or get worse. I’ve asked for help and been hopeful so many times that I can understand why people would think I’m making shit up. I’m not making shit up. I have a complicated, progressing genetic condition which, it turns out, isn’t mild after all. In that context, all of my false starts make sense. But who wants to support another false start? Who wants to help me just for me being me and not for my potential? I don’t know and I’m scared to find out. Nobody wants to find out who their “real” friends are by discovering they don’t have many anymore. And by “nobody” I mean me.