Monday, May 7, 2012

Procrastination and the Consequences

Here's a primer on how not to manage your health when you have a rare connective tissue autoimmune disease which requires important medications to keep you well....

  1. Don't miss your follow up appointments, and if they're too far to get to... say an hour away and you can't drive and/or find a ride... make an appt with a doctor that's closer, at least until you can get to the doctor you want.
  2. Do not procrastinate making said follow up appts with your doctors. This is important later when you need meds refilled.
  3. Make sure your insurance isn't changing or lapsing, especially if you were in and out of the hospital and may not have gotten all your mail in a timely manner.
  4. If your insurance IS changing or lapsing, CALL YOUR SCRIPTS IN AND GET THEM BEFORE THE DATE OF THE CHANGE OR THE END DATE!!!! Paying out of pocket for prescriptions that cost the same as your rent, reimbursed or not, is scary and stupid.
  5. Call your prescriptions in long before they run out, not a couple days or the day the bottle empties. Rookie mistake here.
  6. Check if the prescriptions require a Dr. approval. This is important if you've done #1 & 2, as it takes time to figure out who is going to refill the script when you haven't seen anyone after being discharged from the hospital. **Ahem**
  7. Feeling better is NOT - I repeat - NOT a good reason to put off your follow up appointments even if your sick of doctors!

I did all these wrong. My insurance was lapsing because I missed the renewal deadline, not even knowing I missed it. I got the paperwork in at the last minute, but it caused a few days lapse and I had to call and beg them to push my paperwork through. Of course I needed my scripts refilled because I was out completely, and of course the most expensive one was it. Why didn't I call in the refill on the last day of my insurance coverage??? Because I'm a rookie and I also didn't realize it needed a doctor's okay. 

I didn't go to my follow-up appointments because they were an hour away and I couldn't get there via a friend. The transport option gave me serious anxiety about going to the hospital alone. I didn't know if I could manage the transport bus stairs, and then with my breathing being labored if I overdo stuff... anxiety overload. Anxiety = pain later. I also was so SICK of doctors and being under a microscope. I just wanted time to enjoy feeling better - finally. I'm finally feeling like myself and I wanted to enjoy it. Womp womp. Paying for this now.

When things finally started looking like they were fixed with the insurance, my primary care physician wouldn't fill my script. He's not familiar with what it does & it's not really his realm. Rheumatology takes care of this one - I found this out after calling doctors all day & all of them saying they wouldn't fill it. So more phone calls and even rheumatology is reluctant to fill it now because I missed my follow ups with this department in said far away location. The fact that I have an appt with a local rheumatologist in a couple weeks is what might save me. If I could drive, I'd be in the far away location because they're on top of the new treatments, but I can't. I find out tomorrow if I get a partial script. *fingers crossed*

So I'll be going a day or two without my Prograf/Tacrolimus. Thankfully, they told me that it's built up in my system and I'll be okay until my script is filled, hopefully tomorrow morning. So between the insurance and the missed doctors' appts, and all kinds of headache and drama, I might get my prescription filled after all. 

Let's hope the Prednisone script, which needs approval, goes easier than this one. Maybe they'll even reduce the dosage! A girl with Polymyositis can hope, right?

Tuesday, May 1, 2012

Six Years Ago - Happy Birthday

Six years ago today, I gave birth to the most wonderful child I could imagine.

I don't get to celebrate with my son because I'm still recovering from the issues caused by Polymyositis. My heart breaks if I think about that too long, so I'm not. Hence this is short and sweet.

Happy Birthday Noah!! I love you so much, and may this be just a blip in our journey.

You Might Also Like:

Related Posts with Thumbnails