A.S. Face 1451: Lesa Tucker
Next week I will celebrate my 50th birthday. These 50 years have not been easy. My childhood was not normal and was especially painful for many reasons, still dealing with PTSD from events during that time.
Despite those hardships I managed to graduate high school, college was not an option for me due to financial reasons, so I focused on finding a job. I was waiting tables while searching for my first real professional job. That is where my first boss found me, bless his heart. That job lead to meeting the love of my life, first husband and the father of my children. Six years later he suddenly changed his mind about being married and to this day I do not know why. He left me 3 months after the birth of our youngest daughter. When he left me and our two children it was devastating. I had a few unsuccessful relationships since then. The past 7 years have been about learning to love myself and try to make peace with those demons from my childhood and failed relationships. No dating or relationships in seven long years. I feel like I am finally ready to date someone however it is hard enough to date under normal circumstances so dating with multiple disabilities may not be an option. Today is Valentine’s Day and yet another holiday that I am spending alone.
In 2007 I had a total hysterectomy due to health reasons. In many ways that was the best decision I had made in a long time however I think it may have contributed to the decline of my health at the same time. I started the merry-go-round of doctors appointments to try and find out what was wrong with me. I saw some really bad doctors that told me it was all in my head, or that I needed a psychiatrist or dismissed my questions and concerns and thought I was just another drug seeker. I was persistent because I know my body knew something was wrong. I finally found the right doctor and received diagnosis of fibromyalgia, adrenal fatigue, Epstein-Barr, vitamin B-12 and D deficiency, connective tissue disease, Sjogren’s, etc.
Fast forward to February, 2012. Weekly ER trips because I felt like I was having a heart attack three different times and the 4th ER trip was due to ischemic colitis. The hospital ran test after test, x-rays, etc. and only confirmed that my heart was in perfect condition. I was most likely labeled as a drug seeker during the other ER trips. I was instructed to see my primary doctor. He spent time talking to me, churning through the symptoms and wrote order for cervical x-ray. That x-ray indicated bulging discs in my neck. Within a couple days sciatica struck me hard. I had a MRI of my whole spine. MRI confirmed degenerative disc disease, spinal stenosis, 3 bulging discs in cervical, 3 bulging discs in lumbar, and arthritis throughout my spine. I was sent to pain center which is operated by my local hospital system. I have had multiple cervical and lumbar epidurals over the past two years. In the last year my neurologist, rheumatologist and orthopedist confirmed pituitary tumor, arthritis throughout my body, Raynaud’s, costochrondrotis, bilateral Achilles tendonosis, etc. The next two diagnoses have been more challenging.
In 2013, around mid December I had upper respiratory infection followed by relapse combined with bronchitis. I was prescribed Levaquin, Prednisone and Diclofenac. I started the medication and came down with the flu a day later. I finished the medication while dealing with the flu for 2 weeks. I was so miserable with the flu that I did not recognize that I was having a reaction to the Levaquin. I discovered I had a reaction to the Levaquin when my Achilles tendons became inflamed, both of them, I have had Achilles tendonosis, tinnitus, severe insomnia, and heart palpitations since January 2014. If you do not know about fluoroquinolone toxicity please Google it. Levaquin, Cipro, Avelox (and their generic equivalents) can cause an adverse reaction. There are so many of us that have been poisoned. The fluoroquinolone toxicity has affected my personal and professional life. I use a four wheeled walker due to weakness in my leg muscles and the Achilles tendonosis.
October of 2014 I was diagnosed with Ankylosing Spondylitis or “AS” for short. It is definitely hard to pronounce. When someone asks me what is wrong with me they get a deer in the headlights or blank look when I tell them Ankylosing Spondylitis. I have to explain that AS is in the arthritis family. They still do not completely get it though. I wouldn’t either if I wasn’t cursed with this disease. After reading as much information as I could find, and joining support groups, the pieces started falling into place. I could put a name with the major pain in my hips and lumbar area and other areas at times. Then I read that AS is genetic however I am the first in my family that I know of. I am HLA-B27 positive with severe spondylarthropathies.
What I am about to write is not whining – it is the reality of having multiple chronic illnesses. Don’t judge me unless you’ve spent a day or two in my shoes. I have been in pain for so long that I do not remember the last day I wasn’t feeling pain. The pain, unrelenting fatigue and insomnia have affected my personal and professional life. I am always afraid my most recent sick day or the accumulation of sick days will cause me to lose my job. That stress does not help at all. I have to work as I am my sole source of financial support plus the medical benefits are of utmost importance. I work 40-50 hours a week, one hour commute to work and one hour commute home daily. After managing dinner and dishes it is an hour or two of TV, if I can stay awake, followed by waking up several times due to pain and having a series of naps throughout the night. Then I wake up in pain and drag myself to work for another day. My rheumatologist has mentioned short term disability a few times but I am fighting to hold onto working full time. I am waiting for insurance to approve Humira and get the first injection.
I had to rob my 401K several times over the years because as a single mom raising two daughters I needed the money for emergencies. Now I don’t have much of a retirement fund – not that my body is going to enable me to work another 17 years with my health issues. So I am stressed trying to figure out what will become of me when I can no longer work.
Trying to research and fully comprehend the whole disability process is (a) maddening, (b) depressing, (c) inhumane. Maddening due to the lack of a clear and precise process to file for disability that is outlined and easy for us to understand. Depressing because a major part of your life is dying and now you have incurable disease(s). Inhumane that truly disabled people have lost their job, if they were working, have filed for disability and while waiting, sometimes years, have lost their home, car, significant other at times, and are poor and practically destitute because they cannot work. Many disabled people do not have family to provide a place to live and support them. I am still trying to find the magic decoder ring to understand the whole disability process, then to figure out what I am supposed to do for medical (doctor appointments and medication) while trying to get approved for disability is scary. How do disabled people survive the whole disability process and come out the other side?
Georgia, United States of America