or My Very Bad Day
It started out well enough. My cold is getting better but my cough has been keeping me up. That coupled with the decongestant gets me wired so I was up until 4am again. Then the neighbor's dog started barking outside my bedroom window at 8:30am. When I haven't slept well for days I start to have trouble falling asleep at all and once woken up I can't go back to sleep again. Thanks to the dog and much to the shock of my family I got up before 11am and had breakfast with my husband.
Since I felt better than I had in days I did a load of dishes and cleaned up the kitchen a bit. I knew at the time that it was probably a bad idea to be using up my precious energy stores cleaning the kitchen but I was tired of it being so horribly messy.
When I was done with that I got dressed, loaded my Mum in the car and drove off to the yarn shop. I knew which side street I could park on so I could walk a very short distance to the shop. I also knew there would be seats in the store so I would be ok. Once there, I sat and looked at pattern books while Mum ogled the yarns. Mum is the knitter. I never did master the art of even a simple scarf. I pull the stitches so tight I can't jam the needles through anymore. Anyway, Mum found some wonderful pink yarn to make me some bunny slippers for my Christmas present. She also found the needles she needed and even picked up a pattern for a sweater that I would like for my birthday.
Then we were off to the library. I got a great parking spot right in front of the door and I headed right into the new book area where there are chairs to sit in. I pulled a few books off the shelves to peruse while Mum picked up some more books to read over the weekend. She is one of the fastest readers I know on the planet. It isn't unusual for her to finish a whole book in one day. A week later I'm only half way through my first library book and I've got two more to go. I was so happy to be out of the house for a change and it felt so weird to be driving my car. I couldn't believe how well I felt although I still had the remnants of the cold hanging on. I was in a great mood.
I swing round the bank on the way home to pick up some cash while I was still mobile. My kid tends to suck all the money out of my wallet. At least it takes me a month to go through the pocket money I used to burn through in a week and a half when I worked. It is much cheaper staying home in some regards.
We finally got back to the house and I was pooped. I knew I needed to sit down but I also wanted to get some food into the crock pot first. I'm sick of take out food and wanted some real food to eat for a change. I found a simple chicken in applesauce recipe and started filling the pot with ingredients. I was just adding the applesauce when the phone rang. It was the insurance company: my claim had been denied for "insufficient medical data to support inability to work". I kept it together and asked about the appeals process, the amount of time I had to make the appeal and how long it would take them to reassess it after submission. I hung up the phone and burst into tears. Mum came over to hug me. Holy crap what am I going to do? I have NO income this month and Christmas is three weeks away. Am I going to loose my house? Will hubby get his wish and we'll end up in a trailer in the NM dessert? WTF?!? How did this happen? What the hell went wrong? My doc had assured me that the insurance wouldn't be a problem. I had tons of tests and I knew that the insurance company had gotten all of the results. What the hell?
I pulled myself together enough to finish slapping dinner together and collapsed in a kitchen chair. Now what? Call hubby and ruin his day too? I wanted his shoulder to cry on. I tried talking with Mum but I kept tearing up. I couldn't get any words out. This anger, this frustration, I needed a way to funnel it into something constructive so I hit up the internet. Thank goodness I had the presence of mind to attach CFS links to this blog. I looked up the legal advocacy group and sent them an email I looked up the disability and insurance information on the MA CFIDS site. I got the number for MA Disability Lawyers Association.
I found out that under ERISA I could request the documents they used to asses my claim, the documents they rejected for the assessment and the clinical criterion they used to make the decision. I was back on the phone with them within a half hour of the initial phone call. They were now going to send me the complete document packet along with the letter of denial.
A wonderful lady from the advocacy group emailed me back within an hour with some great information. She told me that the insurance company is looking for test data to support my claim. My word and the doctor's word aren't good enough. I need test data. This makes sense. So now my engineering brain kicks in; what tests do I need to prove I'm not functional? Again back to my blog page to get the link for Dr. Komaroff's lecture. I knew he had lists of tests to show CFS along with papers to support his claims. I also came up with a few extra tests that could show cognitive impairment and joint degeneration. I was on a roll. I emailed my doctor and explained to him about the denial and my idea about getting more tests lined up. I also attached the link to Komaroff's talk A battle plan was forming in my head. Talk with the primary, review the letter of denial, figure out what tests we need to supply and file the appeal. Suddenly I didn't feel helpless and lost. I was still upset but I had a plan. I was lining my weapons up prior to going into battle.
Now that I was calmer, I called work and left a message; I needed to find out if I was going to loose my health insurance and what would happen during the appeal process. I have money to cover the bills during that period but it would be a disaster if I lost the insurance. I knew I wouldn't hear from them until Monday. It was too close to quitting time on a Friday afternoon for them to call me back.
I did some more research and then cleaned up my desk and the desk drawers. I spent the next two hours sorting papers. I didn't want to stop doing stuff. I was exhausted. Words were starting to jump around the page and I was having to read things several times over for them to make sense but I didn't want to stop. If I stopped I would have started crying.
Hubby came home. I broke the news to him and then told him of my plan. We discussed it for a while and I could tell he was having trouble digesting all of the information I was throwing at him. I was starting to slur my words.
He made the sides for our dinner and we sat and ate in silence. I was beyond tired. I was freezing cold and coughing up a storm. My throat had that weird too tired CFS ache. After dinner I went back to the internet and sent off some more emails, including a Christmas is canceled one to my sister. I had already gotten out of doing presents with my brother. I decided that until the LTD settlement was resolved that we had to stop spending money. no more eating out, no more clothes, no presents, no books. It would have to be a financial clamp down for the next two to three months. I don't want us burning through our savings faster than we have to.
Hubby and I sat and talked a bit more and I was now mangling sentences. I couldn't get words out. I would use the wrong words. English just escaped me. He knew I was burned out and needed to be left alone for a while so he went off to kill some zombies.
I decided to look through the list of funny links on my blog. I needed to laugh. After some great pictures at My Food Looks Funny and some good stories on Dr Grumpy I felt a bit better. Mum had come over to find out why I was laughing and joined me looking at cute animal pictures. We then watched our favorite BBC show Doc Martin, which turned out to be a great episode. Everyone headed off to bed except me. I'm feeling just shy of normal again. I'm scared that if I stop typing and go to bed I'll start crying and worrying so I'm up too late again. When I finally get to sleep tonight I'm betting I have a huge crash in store for me tomorrow. Bummer. I was just starting to feel better.