Our laptop got a virus and is down for the count. We had not set up our desktop since we moved so I have been without a computer for at least a week, maybe longer. Anyways, I have been wanting to post so bad and finally came into to use my moms computer just to make a quick update. For a lymie and I guess any one else who is sick the laptop is huge because you can be in bed or on the couch and getting stuff done. Sitting in a desk chair at the computer doesn't work for me real well. We need to get the lap top squared away for sure.
I have had some emotional ups and downs lately. Was really blessed this past weekend when the fire fighters dropped off some food and presents for the girls. It is really easing our burden right now during Christmas. Thank you for that.
The new medication I started seems to be stirring things up. That is good but is feels terrible. Lots of pain and the creepy crawly weak feeling. My grip strength has gone away again and I just want to chop my arms and legs off. Next appt. is the 29th of December. Should be doing lots of blood work and will set the date for my surgery. I am waiting to hear the blood test results from my last appt. I should know today or tomorrow. The new automated system at the docs office never called and it has been about a month so I know the results are in.
As far as disability goes, well I don't even know what to say. I called last week and missed my return phone call (of course). I am waiting again for a call back. I did get a message and a letter that don't make me feel real hopeful. I guess my rep is meeting with the physician consultant to discuss the Lyme aspect. I believe that is the infectious disease doctor who reviewed my appeal. Because a second doctor from a different speciality reviewed the initial claim they want a second doctor of the same speciality to review the appeal. So that still needs to happen. The letter basically said although they attempted to complete the review in 45 days they didn't. They are fairly certain they should have it completed before 90 days which is the end of January. This will have taken only 6 to 7 months. I really am trying to not lose my mind. I know talking to the rep is not going to change anything but I need them to know, as nicely as I can, that this is not okay. They are messing with my life and I don't think they get it. I also want to make sure they understand that I continued to work for a little while after being diagnosed with Lyme and starting treatment. They are looking at this past two years of medical records as a bunch of separate things. I don't think they get the fact that all of my problems for the past two years and more like the past 15 to 20 are due to Lyme. Once I was diagnosed and knew what I needed to do to get better it made working difficult. Then I started treatment and things really got worse. That is what happens with Lyme. They are acting like well you didn't ask to go off of work due to heart issues before. Well did you notice how many ER visits, doctors visits, and tests were run on me during the past two years for my heart and how much work I missed due to all that. How could I ask to go out when I was being told it was nothing serious and to not worry about it. I didn't go out on disability due to ADD, depression, anxiety or anything else but certainly missed a lot of work to deal with those issues. The pain, the neuropathy, the fibromyalgia, the ADD, the sinus tach, the depression, the anxiety, etc...are all Lyme. Why is that so hard to understand. They can ask a second psychiatrist to review my appeal but the psych doctor is not putting me out and it is not that issue alone. It is part of the Lyme. Do you get it yet? Needless to say, I am trying to not lose hope but seriously, I am not feeling really good about this anymore. I can't assume because they are taking so long that is a good thing. They took 75 days to review it the first time and deny it. You have 3 doctors licensed in the state of CA who say this is what I have, what my treatment is, and what I am going through. Yet they have one doc look at the Lyme and say no. I also was wondering if the doctor reviewing my case is licensed in the state of CA and if that is a requirement. I would love to have that in my back pocket...you had a doctor that was supposed to be licensed in my state to review my claim and they weren't. I need to look that up. So that's it for my quick or not so quick update. Hopefully I can write a good post soon. Until then....please keep praying for me and my family.