Ha! This has been on my mind

[sinisterporpoise]

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Caption: The doctor I went to last week was looking over my history and he said, "Endometriosis?" and I said yes. And he said, "Is that just your speculation or have you actually been diagnosed?" And I was like "I have been cut open three times for it so I hope it isn't just speculation and just looked at me and said, "Females tend to diagnose themselves and without missing a beat I said, "Well, I hope you do your job so I don't have to."


First, I am waiting for the government to review my FAFSA to see if I can go back to school. To save gas and to save my knees and now elbows, I'll be taking the free campus transit to my day classes.  Right now, I'm just in another limbo of waiting. I really ought to see if there's something Voc Rehab can do in the meantime so I can more reliably afford things like clothing.   I am now through seven months of the sixteen month waiting period for an ALJ in Indiana, and I probably will not have the hearing until January or February.

Now, onto why this has been on my mind. The thing is, as someone with anxiety issues, I know my mind has a tendency to lock onto worst-case scenarios. I've gotten better about this over the years, but it's a habit that usually has to be worked around. My logical mind needs to peck away at the fears slowly and discount them.  I've had several wrong guesses myself over the past year or so, and one or two right ones. Usually, there's actual evidence to back up the right ones, such as my mother having fibromyalgia and thyroid issues.  

Now, since the idea was put in my head, I've been trying to disprove the idea of EDS-HT or another joint hypermobility syndrome. This is largely because of some likely misremembered phrase about people who have it are likely to end up in a wheelchair.  Now, after I've read a bit more trying to disprove the idea and coming across how fibromyalgia develops in some people, I'm convinced lax ligaments and overexercise caused it, and  I think I do have EDS-HT, but I don't want to tell a doctor what I think I have because doctors tend not to like patients telling them exactly what is wrong with them.  


But I'm also pretty sure that some doctors are taking my concerns less seriously because I'm female. They wouldn't do this if I were male.  If women get treated this way by doctors, it's no wonder they have to figure out what the problem is on their own. It further explains why it takes longer to diagnose diseases that affect women more than men. Doctors are trained, it seems, to take a female patient's concerns less seriously.  It's no wonder women have to go from doctor to doctor just to find one to take their concerns seriously.   

So, it seems that self-diagnosis has a place.  For me now, it's just a matter of finding out if I'm right or wrong.  The evidence provided by my physical therapist seemed to be pointing to a loose ligaments problem anyway.  Or at least, I'd accept them saying I have fibromyalgia because I have a few hypermobile joints. 

Comments

[silk_dragon_zen]

Yeah, alas, being female — or perceived as female — unfortunately does mean not getting taken seriously as often as someone who is male or perceived as male.

And I'm sorry that I may have contributed to your anxiety by affirming things that you've said in the past about reading lists of symptoms for POTS/dysautonomia and/or EDS. I guess since my father and grandmother have/had probable EDS and neither of them have needed to use a wheelchair, it hadn't occurred to me to be concerned about that possible eventuality.

I suspect, and I'm no expert, but I suspect that given it appears to be a dominant genetic condition, you could take an inventory of your family history to assess the likelihood of you losing substantial mobility over the years. If none of them have lost substantial mobility and still are or were able to get around okay without anything more than a cane, then it's very likely that with proper training, use of braces and other devices, your mobility won't be impaired much by EDS in the next few decades. And by the time that you might need joint replacements — like my father and his mother — the technology will be *way* more advanced than what we have available today (and what we have today is pretty good).

[sinisterporpoise]

Don't worry abut it. As you know, anxiety is an insidious thing. It would have found something else to latch onto. It's been a long-time companion and adversary in my life.But it's still much better than the possibility of RA, and it's likely my sister confused RA in family members for a hypermobility issue.Anxiety issues, depression, autoimmune thyroid issues, supernumerary teeth, and screwy ankles are also apparently common in EDS-HT or JHS. (Check on all of those, although the dentist keeps trying to get me to get rid of that incisor that grew in behind one of my molars. If she wants to extract my teeth, she can fight Anthem Blue Cross/Blue Shield and get an approval to sedate me or put me out. I don't want a repeat of what happened when I was younger.)

As for taking an inventory of the family, that's a bit hard since I'm almost certain this issue would come from my mother's side of the family, and despite a history of severe mental illness that I've been able to gather, there's little additional information. My mother died in her early 50s, and her mother in her early 60s. The coroner's report said my mother had traces of cocaine in her system, and my maternal grandmother died of breast cancer, as far as I know. My grandmother did use a cane on occasion, iirc. My paternal grandmother is likely to outlive us all, although I'm certain she doesn't want to. She's using a walker now, but that's because her balance is declining.

For now, I'm doing what I can to either get a diagnosis or to rule it out. The orthopedist in Terre Haute was not helpful in this regard. I don't know if the PT I saw knows about it, and the referral to Doctor Heidi Collins I requested (who takes the Healthy Indiana Plan fortunately enough), could take months. I have in the past two years, collected three different braces given to me or prescribed by doctors. And they do help.