posted
So my new pcp at today's appt thinks the chronic stress from everything going on is prob making my hair fall out. Hey bald is beautiful right ? 😆
I always wanted to be a blonde, they have more fun right? Hey experimenting on wigs can be an adventure.
A home sleep study was ordered because this fatigue isn't normal and she thinks I have sleep apnea....uhh hello how many times did I say I have chronic Lyme and Co's and the Rifabutin might have attacked my endocrine glands? Chronic fatigue is nothing new for me.
Could be iron def anemia too from the copper iud and having heavy periods from it....well I had it removed 3 months ago and my periods are normal now, SOOOOO?
I have to wait for all tests to come back then a endo referral will be placed.
Hmmm again what do I know right? 😆 I wasn't believed for over 20 years, that's why I'm in this hell to begin with. This appointment brought back bad memories of the days before I met my LLMD.
Back on that carousel again.
My eyes are filling up by what I just read on my patient portal summary. Huge letters at the beginning "Generalized anxiety disorder and chronic depression" I think that's pretty normal for many of us in the Lyme community. It's situational. We've been through enough and just want to see some light. Everyday is groundhog day. Am I wrong? I'm a woman, that's whats wrong.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
I hear you. I was treated badly (pun) for decades.
Now, the first time I have an appointment with a specialist, I tell them I respect their education, and that they care enough about people to choose that career.
Then I tell them my all-important input into my care is that I'm the world's top specialist when it comes to me and my health.
Most of the time they are positive and encourage teamwork. One time a doctor rolled his eyes. I was through with him in that instant and never went back.
We have to be our own advocate. If you can't change PCPs, you may have to train them. Prepare information (bring test results, research, and other doctor's comments).
You can be as authoritative as they are, without arguing, or otherwise creating a negative atmosphere. (This can be a challenge.)
Your attitude can inform them that they are part of a team. They are not a dictator. I assume they are still learning, and so am willing to listen to them.
I also keep in mind that they owe a lot of money for their education and the insurance companies rule the health industry. They may understand your issues, but won't put that ahead of paying off their debt and feeding their children.
It's a delicate balance, but I think my attitude influences them to respect what is important to me. Or, it may be that I've finally found doctors that know more than the ones I put up with before. They're called LLMDs.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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It was overwhelming. This pcp was so fixated on my periods too, the questions she was asking me. I was certainly perplexed. It was my first appointment and you know what they say about first impressions, I kept my cool but hers certainly wasn't desirable.
I left a detailed and long message with my LLMD. She doesn't just treat Lyme. I might have to be persistent and be a *itch if I have to be and tell her I need help, this is my life. If I need to open my wallet more then fine.
I can't afford to keep going in reverse. I'm not getting any younger. None of us are.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
if your doctor is not listening to you find a younger one with a more open mind about how to fix you and don't let them compare you to any other patient, and remember its a marathon not a short race took me 6 years to feel cured, I would guess many out here would say the same good luck!
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
99.9% of drs don't believe anything I say and it's been decades.....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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