Tuesday, September 3, 2019

On the Merry-Go-Round Again

It’s not my first time.  It probably won’t be my last time.  But I’ve decided to jump back into the water and try to again figure out what could help me feel better. 

I have a laundry list of conditions – and all are probably related… Dysautonomia, Bipolar Disorder Type 2, an eating disorder, addiction, high blood pressure, clinical depression/anxiety, PCOS (polycystic ovarian syndrome), RLS (restless leg syndrome), sleep apnea, SAD (Seasonal Affective Disorder), Mitral Valve Prolapse, hypoglycemia, social anxiety/phobia, horrible insomnia and sleep issues, PMDD (premenstrual dysphoric disorder), major sinus and ear issues, as well as a horrible immune system and allergies where I get sick at the drop of a hat.  None are immediately life-threatening… but all have the potential to be debilitating.  I have spent years of my life going to doctors to try and get to the bottom of all this.  Whenever I move and/or insurance changes, I must start over.  And because of recent move to a new state, it’s beginning again.

To date, I have tried to treat the sleep apnea with three full rounds of doctors’ visits, tests, and failed treatments.  I have tried just about every anti-depressant and anti-anxiety medicine out there and it’s still a daily struggle.  Bipolar meds have not been worth the truly terrible side effects they have.  I had sinus surgery that didn't fix a thing.  I had problems conceiving my only child.  No allergy medicine has worked.  I can’t stay out late because if I’m not in bed when I get sleepy, I might as well give up for the night.  I plan activities around keeping my blood sugar levels okay (hypoglycemia), not sitting too long in one place (RLS), and not getting too hot (dysautonomia).  I’ve tried diet, exercise, a combo of the two, and many other weight-loss regimens and my weight just won’t go down.  (And if one more person flippantly mentions how I should "just" get gastric bypass surgery…)

Each round starts the same – finding a new primary doctor.  I give my history… list my current medications… and hate how most the time they assume when I list the medicine metformin that I’m diabetic because I’m overweight.  Then the tests come – again.  They test my thyroid, which has always been okay.  They, of course, test my blood sugar levels because they don’t seem to believe me. They repeat tests I’ve had many times.  I try to see if from their point of view – that they need to see the results themselves – but can’t they just request my old medical records and, for that matter, put some trust in the one who is living with all this?

A couple of years ago I moved to another state.  I again took the plunge.  I went to my new primary doctor after having to do lots and lots of searching just to find one that would work with my new insurance.  So, the frustration started even before I walked in the door. I got there and do the typical stuff – filling out loads of paperwork, telling them my history, and submitting to those tests.  I told them I needed referrals to specific specialists and asked if they could get that going.

A week or so later I got the results of the tests they had done.  Shocker!…  Everything was just as I expected and had already told them.  I started getting calls from the specialists that I had been referred to.  One was for a liver ultrasound because my liver enzymes were a little high.  This is not new. I’ve known this for years.  When they told me what my co-pay would be for this little test, I said, “No. Thank you.”  When I went to a follow-up visit to my doctor, he made me feel so bad because I had skipped that test.  

It’s just not right that I’m made to feel horrible about picking and choosing because I can’t afford to do all the tests and go to all the specialists suggested. People who haven’t been here don’t realize just how tiring it is to spend so much time at all these doctors. This round I made the decision to spend my time, money, and energy on the diagnoses that affect my day-to-day life because I know I can’t do it all.

I agree to see one more sleep specialist but I’m already defensive before I walk in the door.  I’m expecting this doctor to tell me that there is a new and better CPAP that I should be able to use… even though I’ve had an ENT tell me that I’m not a good candidate for CPAP due to some structural issues.  I’m hoping against hope there is something out there other than CPAP or a mouth guard or any of the other therapies I’ve tried that will actually work.  But I am not holding my breath.

I went through all of those tests, including having sinus surgery to fix a couple of the issues that have been holding me back from being successful with treatment in the past.  The sinus surgery didn't make a difference.  So I once again have a CPAP I can't use, one of the latest models with the newest, greatest mask, sitting in my closet, making me feel guilty because I keep failing at this therapy.

The same with the anti-depressants… I’ve tried almost all the ones currently out.  Many had horrible side effects.  The withdrawal side effects for some caused me to stay on them much, much longer than I wanted to (though they weren’t helping), because it took such a long time to get up the courage to get off them knowing how terrible stopping would be.   And yet after time passes, there’s always been that hope that they might be beneficial this time and so I try again, only to not have them work… again.

Now I've done the same with bipolar meds, but they have many more and serious side effects so I stopped trying different ones much sooner.  One of them made me incredibly suicidal.  I've been suicidal before but this time was different - even if I didn't want to end my life, I was afraid I would do it on impulse.  I haven't tried another one since.  The horrible symptoms that bipolar gives me aren't nearly as bad as that.

The cycle continues. Years of saying I’m tired of doctors, of spending my free time and any extra money trying to figure all this out.  Then I jump back on the band-wagon and think that surely there’s someone/something out there that can help.  Even though I’m naturally very pessimistic, there’s that bit of optimism that says, “Maybe, just maybe, this time I’ll succeed.”  That thought is what always ends up prodding me to ride that merry-go-round once again.





#SpotlightOnStigma #SOS #WelcomedButNotAccepted #Stigma #MentalIllness #Bipolar #Addiction #SingleParenting #Alone #NotAlone #Depression #Anxiety #EatingDisorder #SuicidalThoughts #OCD  

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