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2014 through today.



2014.... What can I say about this year so far? My FEV1 is down to 26% which is pretty bad. Well, I heard those tragic words spoken at my last appointment.... 


"you qualify for a transplant." 


So far, I have been working on that. Getting my weight down. I had been up to 206, but have kind of stopped losing at 184. I'm trying, but it doesn't seem to be working!

 My pulmonologist had me come in for another evaluation before she went on maternity leave. Since I was doing great, she decided to wait to make the big decision until AFTER she comes back from her leave. She also put me on a long term antibiotic. That is fine with me. I would rather try to keep the bacteria colony living in my lungs under control. I guess, it is kinda like birth control pills for bacteria! 

I am working on myself, trying to get as healthy as I can be, and waiting for her to get back to work. So when it came time to see my Pulmo my insurance lapsed! I put in all of my prescriptions and the pharmacist called me and said I was not covered!

 HOW do you just drop my insurance without notifying me? 

 Well, since I am on state assistance, and had asked for cash help, they made me go in for child support services. Sure, if you can find him and he happens to actually have any money... Go for it. Well, apparently I missed responding to a form, and that is why they cut off my medication. I raised HELL. 

 "Do you understand that my medications are LIFE SUSTAINING medications and without them there is a very good chance I could die?"

 "What did my child do to deserve you trying to kill her mother?"

 Sure, I exaggerated a bit... But, I got what I needed. And a few terrified case workers to boot.

 So I am still waiting to get into my pulmo. Because of the lapse, I now have to get ANOTHER referral to see her. 

 All of this pisses me off to no end. After the insurance fiasco, I fired off a letter to Sen. Dick Durbin, and you know, he got right back to me. Like he always does. BUT, he mentioned NOTHING of my needs, trouble with public assistance or anything. Just his support for COPD funding. 

 A disabled person who is transitioning FOR YEARS to Medcare from Medicaid, should NOT fall under the same rules as the general public who are fully capable of working. I haven't the energy to make 40 phone calls a day for 2 weeks before I get a human being on the phone, the lady who answered said they don't get funds to upgrade the phone system, it is better to come down there... Umm... If I get there, it isn't going to be pretty. 

 So, I am still waiting to get in to see her. 

 Thanks for reading! 
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