As My Joints Turn

My Autoimmune Soap Opera

I’ve written many times about my fear of losing health insurance due to my pre-existing conditions.  Recently, the Justice Department has decided to not defend the Affordable Care Act in court.  Without defense the ACA could be determined to be unconstitutional, thus illuminating the protections put in place for people with pre-existing conditions.  According the the Department of Health and Human Services, as many as 130 million adults under age 65 in the U.S. have pre-existing conditions that could result in their not being able to get insurance coverage in the private market.

Now Politicians often state ignorant things about people with pre-exisitng conditions.  My senior, Pat Toomey referred to insuring us as trying to insurance “a burned down house” after the fact.  Recently, Florida Governor, Rick Scott stated, ”

“I believe that if you have a pre-existing condition, you need to still be able to get health care, so it’s very important to me,” Scott told reporters in Tallahassee.

“I think everybody ought to be able to get health care insurance. I do believe that you’ve got to start working to fix the law and that law caused our premiums to skyrocket. But I don’t believe in grand bargains, I believe in incrementally trying to make change. We’ve got a lot more competition. We’ve got to reward people for caring for themselves.”   (click here to read the article in full)

What did I just read???

We’ve got to reward people for caring for themselves. 

We’ve got to reward people for caring for themselves.

We’ve got to reward people for caring for themselves.


Is this man insinuating that people with pre-existing conditions did not care for themselves prior to onset?  Now he did mention cessation of smoking programs as one way to “reward” people for caring for themselves.  Prior to getting sick, I was active.  I ate healthy and worked out 3-4 times a week.  Ironically now as a person with multiple illnesses, I am constantly trying to take care of myself with doctor appointments, diets, and taking my prescribed medications to maintain my ability to function and move.  What reward do I get Governor Scott?  Higher payments for medications?  Higher bills for doctors visits??  I am constantly doing all I can to care for myself.  Are your incremental changes to healthcare going to work in my benefit or against me??  Inquiring minds want to know.  Sick people are waiting and we are sick and tired of always having to wait.

For example, I got a call from my endocrinologist’s office today.  My latest blood work still indicates my thyroid disease is not controlled.  Her assistant called and said, “Although the results are not good, you are moving in the right direction, which is good”.  Hmmmm…..So not good is good.  I’m still not sleeping, losing hair in clumps, and gaining weight no matter what I eat or don’t eat.  The right direction sure feels wrong some times.  As a patient, I’m so tired from having to be patient.  I know thyroid issues take a while to change and resolve, but I can literally feel my body falling into exhaustion.  Lack of sleep is causing my fibromyalgia and RA to flare.  Body pain wakes me up when I move in the night, so even when I do finally fall asleep, I wake about 10 times a night.  Yet, I’m told that I have to wait to feel better.

I try all kinds of remedies to find ways to help me sleep at night (meditation, herbal teas, breathing techniques, not napping during the day), but Graves disease is in control right now, so nothing works.  I’m trying so hard to do the right things to help myself get better.    I am taking care of myself the best I possibly can.  So I have to ask, hey Governor Scott, what is my reward??





8 thoughts on “Patients losing patience…

  1. This is a great post. It is frustrating that this is the case. I don’t struggle with the same issues, but I can relate to the expensiveness of everything that comes with an illness. My mother has trouble with her thyroid, has anemia (which I have), and family struggles with other illnesses and mental illness. It is maddening that this is a thing. Hang in there.

    Liked by 1 person

  2. Rick Phillips says:

    Elections matter. The last one mattered a lot and it may well be damning for those of us with chronic disease. But of course we are not the ones most care about. Yes, elections matter, but the last one matters so much less than the one coming up.

    Now repeat after me, elections matter because the last one will be around in our society for at least 20 years. If we have a repeat of the last one, the next one might be around for 30 years.

    Liked by 1 person

    1. It’s truly frightening.


  3. I can really relate to this post. I also have thyroid disease, I had a total thyroidectomy 5 years ago. I still have not found the right balance of medications to feel any level of wellness. There is this mentality in America that anyone who gets a disease, or is poor, etc. didn’t do something “right” along the way. This mentality is held by the majority of Americans who have not experienced any of these difficult circumstances. It suggests that those who experience misfortune brought it upon themselves. It is sickening and it is what we experience from the western medical system as well. I’m “lucky” because I have medicare now that the powers that be have considered me officially disabled. Without it, I would never be able to buy insurance with all of my current diagnoses.

    Liked by 1 person

  4. Yeah, I deeply despise how this country treats its vulnerable.

    Liked by 1 person

  5. Lisa Ehrman says:

    Good post. I felt the same way when I heard what Scott said. Unfortunately, I’m hearing it from so many others. What a worry this is, especially since I can’t go to work.

    Liked by 1 person

    1. It truly is. Like patients don’t have enough to worry about


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