DIARY UNTIL I LOSE MY COBRA INSURANCE 8/22/09-sent to President (WH), .GOV site, all representatives, Sacramento: Center for Infectious Disease, Insurance Boards, SSA representative, insurance carrier, news outlets and anyone else that will listen.
08/10/09 Monday I put word out to 8 doctors. My heart doctor [she is wonderful] ordered and I already went; blood work. Heart muscle, connective tissue disorder and urinalysis. She is personally calling an Infectious Disease doctor to see if he will see me STAT. My Orthopedic HIP doctor called to say they faxed the information Friday. My PCP called last night. He says because I listed ALL my doctors to SSA, if ONE doesn’t respond I won’t be awarded and if they give ALL different reasons, I won’t be awarded [I reminded him: my doctors are ALL DIFFERENT kind of doctors]. He’s asked me to contact them and get them on the same page [he’s too busy]. I asked about the new diagnosis. He says the titers on the Q-Fever are low and probably a false positive. I am reminded that since I contracted this disease on top of all others in 4/09 from a TICK bite, I have been on several doses of Antibiotics [4/27 Tobramycin Sulfate, 5/14 Penicillin VK, 5/18 IV: Gallbladder surgery with pills sent home and 6/16 Clindamycin Hd]. I am surprised it showed at all. It must be worse than I thought. He did refer me to an Infectious Disease doctor [as I pushed: WHAT DO I DO?]. I will call this morning. I can’t leave any stone unturned right now. Nine business days left on my insurance and hoping for a miracle.
08/09/09 Sunday I am understanding NOW why I am losing my COBRA benefits after 18 months and not receiving the extension. I am losing my insurance because my carrier is in Texas. Therefore, they are exempt from California rules and regulations. All of my Colleagues are losing theirs as well. I have also discovered my PCP is a Board Member for a Hospital that is being investigated and shut-down. I wish he would have referred me elsewhere 9/08 when I was very sick because he had other things on his mind.
08/08/09 Saturday Results in TODAY. Two years+ of telling my doctors I was sick. It took me paying cash to a Homeopathic to test: Positive Phase I and II Q-Fever. I am looking at 1.5-4 years of therapy with 10 business days left on my insurance. Needless to say, I don’t know what to do or who to go to with this test. I am unbelievable scared and sad.
08/08/09 Saturday Today I am still in bed to alleviate pain. My gastric abscesses and Interstitial Cystitis are flaring with pain and fatigue. I have severe lower stomach and back aches. I am meditating to keep the stress at bay.
08/07/09 Friday Today I received a call from my SSA representative here in Corona, CA. Doesn’t look like I will receive a ‘Notice of Award’ for permanent disability to save my COBRA insurance in time. Most of the doctors are NOT responding to their inquiries. She says it doesn’t look good. I let her know I was not EXPECTING-therefore I wasn’t crushed but I was HOPING. I thanked her for the update.
I am on my back in bed to alleviate the leg pain. Oh, by the time I realized the new PCP hadn’t called me back it was 1 in the afternoon and they had already left the office.
08/06/09 Thursday Today I had an urgent visit to my heart doctor. Severe pain and swelling in the left leg. An urgent LE Venous Doppler, Bilateral was negative. EKG fine. She says to pursue the Infectious Disease as hard as possible until 8/22/09. She says: you never now, it could be something cash can take care of. Then she nodded: who am I kidding. I thanked her. She gave me a referral for a new PCP. I called and they said they would call me right back.
LETTER TO THE WHITE HOUSE-08/07/09 Friday
I am a Republican through and through. However, my story is SAD. I have Blue Cross Blue Shield PPO COBRA I pay $750 a month for. Unfortunately for me, it expires 8/22/09. I have been VERY SICK. Last year alone, my out-of-pocket health care costs were $32,000. Because of my illness, I have had to apply for SSA (still pending). I have gone around the loop with my ADP COBRA provider, my employer and my current insurance carrier. They say I cannot have the 11 month extension because my employer’s corporate office is in Texas and they do not have a mandate for California. My insurance carrier won't offer me a price on continued coverage because I am too sick. I can't buy other insurance because of my multiple diagnoses. And, my husband can't find full-time work with benefits (laid-off after 18 years on the job).
My plight started 05/07 with a dental injury to the jaw. Immediately after, I had mouth problems, then sinus, then brain, partial heart, possible pulmonary, gastric problems and now spinal cord. I've been around the circle to EXCELLENT doctors. Everyone wanting their own tests.
My Rheumatologist has diagnosed: Fibromyalgia, Chronic Pain, Neuropathy and Myopathy.
My Neurologist has diagnosed: Chronic Fatigue Syndrome, Epstein Barr Virus, Neuropathy, Myopathy, Pansinus Disease and Dystonia.
My Gastro was hoping to diagnose me with Crohn's. However, pathology says it isn't Crohn's.
My Urologist has diagnosed me with Interstitial Cystitis.
My Orthopedic has diagnosed: Cervical damage and Lumbar Arthritis.
My Infectious Disease specialist won't see me anymore. I have become the OMGoodness here she comes patient.
My PCP of 22 years has completely written me off as an OMGoodness here she is patient also.
I am just now starting with a new circle of doctors. However, with my COBRA ending 8/22/09 and no one willing to sell me a policy, I am destined to die undiagnosed without a treatment plan.
All my specialist's individually say: you need to go back to your Infectious Disease specialist because there is something wrong. But of course, he won't see me. Odd hand-written letters delivered to my door.
I've lost nearly all of my savings as I have been taught to live within my means. I bought my Condominium in 2004 with a $75,000 down payment. I was taught investing in my assets is a great thing. I may lose my Condo now as I am upside down with my Equity ratio. I did the right thing and look where it has gotten me.
I am a very personable/pleasant 50 year old Caucasian woman. I am very frightened as to what the future brings for me. I've actually asked my doctors for Hospice so I don't have to leave the house and be treated with such indignity. However, they don't have a diagnosis for that. Nor, do they have a diagnosis that will save my life right now.
By blood/serology is crazy. My Eosinophils, Lymphocytes and Triglycerides are off the charts. My Antigens: RNP, ANA-A and ESR are double. I go to Emergency sometimes three times a week.
What am I going to do in 2 weeks? If my body finally decides to give them the clue they need, I will die at home with no help and in unimaginably worse pain than I am suffering now.
I was hoping SSA would give me a 'Notice of Award' before 8/22/09 as if I get that notice into my ADP COBRA insurance hands before the expiration date, I will be allowed to continue paying $750 a month for another 11 months.
