Why am I so passionate about ACA/Obamacare? I would like to tell you my story.
In early 2000, I developed cysts under my right arm. My father had died of non-Hodgkins lymphoma, so I am sure you can understand my fear when I felt multiple lumps under my arm. They turned out to be benign, but I began to go down a road that would forever impact my life. At the time, I had life by the tail as they say. I had a Master’s Degree in Clinical Social Work and loved being a therapist and helping people effect the changes they wanted in their life. I was overweight, but with the exception of these cysts or lumps, I was in great health.
I went to the doctor, when my cysts/lumps returned and I was given a medication called Levaquin. I was told it was a relatively new drug and that it was used for a variety of infections and would quickly take care of the cysts. It did get rid of the cysts for awhile, however they would recur over and over for the next several years and also began to show up under my left arm. With the first prescription of Levaquin, a quinolone, however, during the same two week period that I had horrific pain in my legs. I brought it up to the doctor and she told me I should go to the gym and start a workout program and lose the excess weight. So, that is what I tried to do. I remember standing on the treadmill, with pain in my right ankle and both calves, that felt like someone was sticking a boiling hot pitch fork in my leg. I kept with it day after day and after 20 to 30 minutes of this excruciating pain, my legs would just go kind of numb. I was grateful for the numbness, and could continue on the treadmill once it got to that stage. The only problem was that when I tried to get off the treadmill, I had to hold on to something to keep from falling.
While the medication for the cysts seemed to work, six weeks later they were back and I was prescribed Levaquin again. My legs were still hurting and I found that when I went to the mall to shop ( oh yes, I loved to shop), I would have to sit down on the benches all the time to rest and regroup from the pain. My mind became consumed with how many steps I could take until I could sit down again and stop the burning sensation in my legs. The cysts returned many times over the next 18 months and each of those times I was either given Levaquin or Cipro. I was working at a university and got $900.00 in parking tickets, because I simply could not walk from the employee parking lot to my building. I was gaining weight because I could not move much, but I was so embarrassed at my inability to walk, and my shame at gaining weight, that I just listened to the lectures from my doctor, my family, and my friends about the need to exercise and paid the tickets.
By 2004, I could only walk less than 250 steps. That is the number of steps from the closest parking spot at the mall, to the first bench. I would count those steps and internally just force myself to keep going. By 2005, I could only walk 100 steps. By 2006, I was no longer working and could walk less than 50 steps at a time. I tried to get insurance, but my weight and the cysts kept me from being eligible. It was a vicious circle.
Finally in 2008, I purchased horrible insurance, I think it was called limited liability. Basically, it paid for five doctor’s appts a year and so much per day if you were hospitalized. That was the year I was diagnosed with levaquin toxicity syndrome. It seems that the antibiotics I had taken to help me, hurt me, because a drug company failed to reveal the devastating effect this medication can have on ligaments and tendons. I knew then, my life would never be the same. I remember sitting in my recliner, with my head in my hands, praying that God would help me figure out what to do. How was I going to live, much less support my son? As I began to research levaquin toxicity syndrome my heart because heavier and heavier. Based on what I read, I knew there was little hope I would ever return to walking normally, or be rid of the unbearable pain.
In 2010 I developed lymphadema. I really went downhill after that. I was so full of lymphatic fluid I didn’t know which way to turn. I was taken to the emergency room by ambulance because if you swell up to much, you can get looney in the head and the lymphatic fluid will start to ooze out your pores. That is what was happening to me. The ER sent me home, pretty sure it was because my insurance was no good.
My son, begged me to return to the ER two weeks later on the night of his graduation, because he was afraid I would be dead before he got home. You know something, he was almost right. This time when I got to the hospital, I had a different doctor and he admitted me immediately. I was in the hospital 3 weeks and a nursing home for 2 months. No, I am not a senior citizen…this happened at the ripe old age of 49. I do not remember much of the hospitalization, which is probably a good thing. My oxygen level was dangerously low due to the lymphedema and the lymphatic fluid was pouring out my pores. For the first forty eight hours, they had to change my sheets and my bed clothes. My brain didn’t work right, it is because I was dehydrated and malnourished. I didn’t even know someone who was overweight could be so malnourished. I had difficulty holding on to reality, and knowing the difference between dreams and what was really happening. This was because I was so low on oxygen. Still, when I think back to those days, I am grateful to be here, thankful for my son’s tenacity and sad at how sick I had to get in order to find help. I also felt desperate because I knew that while the crisis was over and I had survived but I was far from well.
After being released from the Nursing Home, my life had a new normal. I left the house rarely unless I road the handicapped bus to go to the doctor. I became isolated from my friends, primarily because of my shame at being overweight. Nothing seemed to help and somehow between being in the hospital and getting to the Nursing Home I had completely lost my ability to walk without a walker. I prayed and prayed that there would be a solution for me. I watched on television as President Obama and the democrats called for a national health insurance plan. I became riveted to the television to see if there would be news about the health care plan.
When I heard about ACA I was thrilled, but 2014 seemed a long way away. When I found out that there was a program for people with pre-existing illnesses I cried. It was simple to get the insurance. They didn’t care about my illness, my weight, they only asked me for my age. That is how my premium was figured. For the last 2 years I have paid $300.00 per month for insurance.
The Affordable Care Act and the Pre-existing health insurance (PCIP) changed my life. I was on 24 hour oxygen for the first year. I found out I had apnea. Just in case you are wondering it wasn’t just a little snoring, my oxygen levels dropped to 48% when I was laying down. For the first time in years, I could sleep with the help of a machine that made me breathe at night. I was able to go to pain management and get help for the horrendous pain caused by my levaquin toxicity syndrome. I went to physical therapy. In December 2012 I had gastric sleeve surgery. You see if you can’t move, you can’t burn calories. Since December I have lost about 150 lbs and I have still have some to go. My lymphedema is better. I no longer need Oxygen. I have a scooter and can do my own grocery shopping. I can get in and out of a car. Sadly, I will never walk again due to the damage the levaquin did to my system, but I have a quality of life, I thought I would never regain. It may not seem like much to you, but to me it was life-saving. I am not afraid anymore that I won’t wake up or that I won’t see my son marry, graduate from college, or know my grandchildren. President Obama stands in the gap for me and others like me. His determination that healthcare should be a right and not a privilege means I will have the opportunity to live. I have a long road a head of me, but now I can keep moving and perhaps some day some researcher will find a way to undue the damage of levaquin toxicity syndrome. Thanks for reading. I hope it will help you or that you will help others understand that while ACA/Obamacare is not perfect, it is saving lives and it is better than no plan at all.