A.S. Face 0302: Amanda Fannon

June 11, 1998I was at The Fox’s Den, a beauty salon inPennington   Gap,Virginia, when there was a very loud crash and a car propelled into the building. I was hit by the car just under my left hip. When the car came to a stop I was laying under the front end of the car. My legs were behind the passenger side tire and my head was in front of the driver’s side tire which was still turning, burning rubber into the concrete floor. I wasn’t able to turn my head to see if my 12 month old son was okay. I had been holding him on the same hip the car hit. After large portions of brick and block debris was moved I was able to turn my head and see my son. I could feel him in my arm, but he wasn’t moving or crying. When I looked at him he was right beside the spinning driver’s side tire and blood was running down his face. I searched for my 2 ½ year old son and my 8 year old brother. My son was shaken but unharmed. Someone told me my brother was already in an ambulance. They yelled for me to go out the back and come around the building to get to the ambulances because I couldn’t get across the car and debris to get out the front.  When I stood up I felt something in my back pop. I have had pain there every day since.

I went to the emergency room atLeeCountyCommunityHospital. They took x-rays, diagnosed whiplash, I received two stitches in my right elbow, six stitches behind my left knee, five stitches behind my right knee, and thirteen staples in the back of my head. Behind my right knee a section of skin was torn off and tissue was protruding. The doctor stuffed it back in and stitched it up. My youngest son had a concussion. My brother had a fractured nasal bone, baby teeth knocked out and his front permanent teeth knocked loose. He received seven staples in his head. I came back to the ER onJune 13, 1998to have my stitches and staples checked.June 18, 1998I returned to the ER to have the staples removed.

I was referred to Dr. Sultan, a general surgeon in Pennington Gap, for removal of my stitches. He treated me from June through August 1998. He removed my stitches. I reported the following symptoms; back pain, headaches, limited mobility and pain in my right knee. July 1998 he ordered x-rays of my knee and referred me to Lee County Community Hospital Physical Therapy in Pennington Gap for four weeks of physical therapy. I continued to suffer from headaches and back pain. Dr. Sultan ordered a CT scan for the headaches. The CT scan was clear. He advised me to take OTC medication for the pain. He told me he didn’t believe I had back pain.

Unsatisfied with these results I made an appointment with another doctor. Dr. Norton inPennington Gap,Virginiatreated me in August and September 1998. He ordered x-rays of my lumbar spine and suggested I get aMRI. At theMRIappointment there was a mix up with paperwork and they did not perform the test. I went back to Dr. Norton to get anotherMRIscheduled. He told me he didn’t think I needed aMRIright now, to wait six months and see if it got any worse.

Still needing help with my back pain I went to yet another doctor. I saw Dr. Schwartz inNorton,Virginiafrom October 1998 through March 1999. He ordered x-rays of my lumbar spine (2nd time) and referred me to Wilderness Road Physical Therapy in Pennington Gap, Virginia for six weeks of treatment for my back. After completing it I was still in pain.

Dr. Schwartz referred me to Allen Chiropractic in Wise, Virginia. Dr. Allen took x-rays of my lumbar spine (3rd time). I reported neck pain while driving. He told me it was from whiplash and I would always have problems with neck pain. He also thought it might be why I was having frequent headaches. I saw Dr. Allen for two months with only short term relief of some of my pain. Dr. Schwartz told me that since PT and the chiropractor did not help me he could do nothing else for me.

At this point I had seen three doctors and was still in pain. Hopeless, I gave up and concluded I was going to live my life in pain without even knowing what was causing the pain. My whole life flipped upside down. I could no longer give my children baths. I couldn’t get down in the floor to play with them like I did before the accident. I couldn’t lift a full laundry basket. I couldn’t get a 12 pack of soda from the store without throwing my back out, winding up on the floor unable to move. Many times I had to call my husband home from work because I couldn’t take care of my children. This was very hard for me to accept. I was only 19 years old. I shouldn’t have any physical limitations at this age. I wanted my life back.

October 1999 I was sitting in class at college and my right leg went numb. I couldn’t get up out of my desk. I was finally able to get up after about a half hour, but I couldn’t walk normally. A friend noticed and asked me what was wrong. I told her about the accident and explained I hadn’t seen a doctor in seven months. She referred me to Dr. Ahmad inPennington Gap,Virginia. I was doubtful and had lost my faith in doctors, but I gave it another shot. I didn’t know what else to do. Dr. Ahmad treated me from October 1999 through May 2000. He ordered x-rays of my lumbar spine (4th time). He diagnosed me with Sacroiliitis and administered steroid injections in my right sacroiliac joint twice. He referred me to Lee County Community Hospital Physical Therapy inPennington Gap,Virginiafor my lumbar spine. I was treated with PT in February and March 2000.

Experiencing no relief from the steroid injections or the PT, Dr. Ahmad ordered lab work to look for the HLA-B27 gene. Once he got the results as confirmation he diagnosed me with Ankylosing Spondylitis. He referred me to Arthritis Associates inKingsport,Tennesseefor a confirmation of the diagnosis. May 2000 Dr. Chris Morris at Arthritis Associates confirmed I did have AS. Ankylosing Spondylitis is a very painful genetic chronic inflammatory arthritis and autoimmune disease of the skeleton with involvement in peripheral joints. It affects joints in the spine and sacroiliac joint and can cause eventual fusion of the spine.

July 2000 I moved and saw a chiropractor named Dr. Gustafason inSt.   Petersburg,Florida. He treated me from July 2000 through March 2001. Dr. Gustafason ordered x-rays of my lumbar spine (5th time). I received chiropractic adjustments and massage therapy. I experienced only temporary relief from pain.

May 29, 2001I went to court over the car accident in the beauty parlor. My medical bills were approximately $19,000 at that time. The defendant’s attorney’s argued my back problems were hereditary and there was no proof that AS was set off by trauma from the accident. They also accused me of running up medical bills trying to get more money. The jury awarded me $14,000. When we were leaving the court room the defendant’s attorney said, “I’ve never lost a case inLeeCountybefore.” My attorney replied, “I don’t feel that we actually won.” The Judge said, “No, it was more like a settlement.” We did appeal the decision. The day of the hearing,July 23, 2001, I was in the hospital in early labor with my 3rd child. They conducted the hearing without me. The judge denied our appeal, stating the verdict was fair.

I saw Dr. Taylor in Big Stone Gap, Virginia from May 2001 through August 2003. He ordered x-rays of my lumbar spine (6th time) and lab work. He treated me with medication for AS, headaches, insomnia, depression, anxiety and back pain. I reported extreme tenderness and unexplained body aches and pain. He didn’t take me seriously, actually laughed at me at one appointment. He eventually, after months of appointments and consistent complaints of the same symptoms, diagnosed me with Fibromyalgia. He then referred me to Dr. Bible, a Rheumatologist inBristol,Tennessee, for a confirmation of the Fibromyalgia diagnosis. Dr. Bible confirmed the diagnosis in May 2003 and told me there was currently no treatment for Fibromyalgia.

December 2003 I began seeing Kellie Brooks, FNP at Stone Mountain Health Services inSt. Charles,Virginia. She treated me for headaches, insomnia, depression, anxiety, back pain, AS and Fibromyalgia with medication. She ordered lab work, x-rays and a MRI of my lumbar spine. I was thankful to finally get a MRI and not a 7th round of x-rays. The MRI was conducted on February 2, 2004. It showed left disc protrusion at L4-L5 with nerve root compression at L5. She referred me to Dr. Lorio, a surgeon in Bristol, Tennessee, and Dr. McDonald, a neurologist in Kingsport, Tennessee.

I saw Dr. McDonald on July 9, 2004. He did nerve testing on my right leg because of tingling and numbness. I felt sensation in my right leg and toes, therefore in his opinion the test showed no permanent nerve damage. I saw Dr. Lorio on July 29, 2004. He suggested I have back surgery to repair the disc. I told him I couldn’t have back surgery while my children were so young. He told me to come back to him when I was ready to have surgery and sent me to be fit for a back brace. I continued to see Kellie Brooks, FNP until March 2005.

March 2005 through July 2011 I saw Teresa Ellis, FNP and Torry Taylor, FNP. They were also with Stone Mountain Health Services, but at their Pennington Gap, Virginia location. I was treated with medication for headaches, insomnia, depression, anxiety, back pain, hip pain, AS, and Fibromyalgia. They ordered x-rays of my lumbar spine (7th time), right hip, and left heel, lab work, and a MRI of both my lumbar spine (2nd time) and cervical spine.

During my numerous and endless search for treatment for multiple diagnoses, yielding very little relief, many things happened in my personal life. My husband and I separated in January 2007. Many of my symptoms had gotten progressively worse in the nine years since the accident. I was suffering from severe hip pain and unbearable back pain. Currently employed as a Customer Service Rep, I was missing a lot of work. I was forced to call in sick or frequently leave early because I was physically unable to do my job.

In July 2007 I took a leave of absence from work. My condition continued to go downhill. I filed for Long Term Disability and SSI in September 2007. I was denied in October 2007 and hired an attorney in November 2007 to appeal the decision. I continued having severe low back pain and right hip pain along with severe Fibromyalgia symptoms; widespread body pain, stiffness, insomnia, migraines and cognitive confusion. Living in constant unrelenting pain gave me anxiety and depression. March 2008 my Long Term Disability and SSI appeal was denied again so we petitioned for a hearing before a judge. That same month I lost my home to foreclosure due to not being able to work. I moved myself and my three children into my friend’s grandmother’s rental  house (temporarily free of charge) until an apartment in long term housing became available. Our belongings went into storage.

March 2008 I was started on Lyrica, the first and only newly FDA approved (in 2007) medication for Fibromyalgia. Lyrica did not offer any symptom relief, which is common. Fibromyalgia is a little-understood neurological condition and not all medications work the same for all patients. The side-effects I suffered were profound. I gained approx. a pound a week and experienced no relief of any symptoms. My dosage was increased and it still did not improve any symptoms, but I continued to gain weight. After gaining 20 pounds and experiencing no relief, Torry Taylor, FNP and I agreed I should be taken off of Lyrica. It was clearly not working for me.

April 2008 my three children and I moved out of my friend’s grandmother’s rental house and into a long-term housing apartment. My anxiety and depression were through the roof. I was referred to a therapist, Kay Weitzman in Pennington Gap, Virginia, in May 2008. I saw Ms. Weitzman for three visits, but had known and talked with her informally for several years. I was only able to attend three appointments because I was in too much pain to drive to see her once a week. It actually caused me even more pain. At this point I was spending most days in bed, in far too much pain to participate in normal life. Eventually the Fibromyalgia pain eased so I could get out of bed and had a little more energy but I was far from capable of working or taking care of my family and myself.

May 22, 2008 I had a MRI on my lumbar spine (2rd time). It indicated degenerative disc disease when compared to the MRI in 2004. I was referred to a surgeon, Dr. Brassfield, in Bristol, Virginia, in January 2009. He informed me back surgery would not help my back pain. It would only help severe leg pain, which I did not have. He suggested I have several more tests done, but my insurance wouldn’t pay for them.

April 2009 I got married. My husband did nearly all the cooking and grocery shopping for our family. The few times I attempted to grocery shop I grabbed a few items and was in tears by the time I checked out. My low back and hip pain were excruciating.  My children did their own laundry and helped me with mine. My children also helped with the house cleaning I was unable to do. I was back to living in bed.

I was experiencing horrible ongoing pain in my left heel. Walking was very painful. I had a x-ray of my left heel. It showed a heel spur, which is one of many symptoms of AS. July 2009 I was placed on Savella, another newly FDA approved (in 2009) medication for Fibromyalgia. It helped with my pain a lot. I still had pain, but was out of bed more days than in. That was major progress for me. In September 2009 my car was repossessed because my ex-husband stopped making court ordered payments. I could not afford to make the payments having no income due to being unable to work and repetitive disability denials.

October 2009 was the hearing for my disability case. In November 2009 I received another denial letter. It was heartbreaking. I couldn’t believe with how sick I was they denied me again. In December we petitioned the appeals council to review my case. On April 19, 2010 I began having severe chest pains radiating down my left arm. AS can cause heart problems. My doctor ordered me to the emergency room. All the ER tests came back fine, my heart was okay. They ordered x-rays of my cervical spine and diagnosed a pinched nerve in my neck. It was October 1, 2010 before I finally had a MRI. It did not show a pinched nerve, but did show degenerative disc disease in my cervical spine. It was about this time Savella spontaneously ceased to decrease my pain, so I was taken off of it.

March 2010 I started having marital problems. My husband said even though he knew about my illnesses, pain and limitations before he married me he didn’t realize the extent of my disability and how hard it would actually be to support our household and caretake for me. We sought marital counseling for five months. Ultimately he decided he did not want to stay married. He asked for a divorce on December 31, 2010. Because I had no income I couldn’t afford the rent, but had no idea what to do. He moved out and paid all the bills until my children were out of school for summer break.

In October 2010 I received the denial from the appeals council to review my case. In November 2010 we decided to go to Federal court because I cannot work and deserve to be approved. It was just getting ridiculous at this point. With my healthcare through Virginia State Medicaid, Teresa Ellis, FNP referred me to Dr. Abril at Arthritis Associates in Kingsport, Tennessee. I had seen a different doctor there previously in 2000 upon a referral from Dr. Ahmad. It took five months to get an appointment with Dr. Abril.

January thru March 2011 was the most difficult time in my life. I became severely depressed and Teresa Ellis/FNP placed me on Cymbalta (FDA approved for Fibromyalgia in 2008) to treat both Fibromyalgia and depression. I was under an extreme amount of stress. The more stressed I became, the worse my Fibromyalgia pain got. I was going through a divorce, pain had consumed my life and I had no viable way to support my children and myself. My days were mainly spent in bed. My children would come home from school and have to sit on the bed I lived in to spend time with me. I felt completely useless, like I was a terrible burden to everyone around me, especially my children. No one understood my pain. Cymbalta was not taking it away. I had been repetitively denied disability that was duly owed to me. I had nowhere else to turn.

My diagnoses were Fibromyalgia, Ankylosing Spondylitis, Sacroiliitis, Degenerative Disc Disease in my lumbar and cervical spine, ruptured disc at L4-L5 and a pinched nerve at L5. I was 32 years old. I lived everyday in ungodly amounts of pain and my doctors refused to prescribe pain medications. They told me I was too young and the area where I live had a drug problem. I failed to understand their logic. I couldn’t work, couldn’t even grocery shop. There was absolutely no relief from this pain anywhere in sight. I was a single mother of three sons who excel in scholastics and sports. But I could not work to support them and had been denied disability countless times. My family was far away. My children helped as much as they could, but there were some things they couldn’t do. I already felt guilty because there was so much I was unable to do. Children aren’t supposed to take care of their parents, not as teenagers anyway.

Sunday, March 6, 2011 was the worst day of my life. My children were at their father’s house for the weekend. My soon to be ex-husband and I were arguing. I had lost the love of my life because I was so sick. I saw no future for myself other than pain. What kind of life could I provide for my children? I was going to have to move but had no resources to do so and no way to pay the rent once I did. My doctors agreed and supported my disability claim but we were yet to convince Social Security Administration. Child support from my ex-husband certainly couldn’t support a household.

I was so severely depressed I honestly believed everyone would be better off without me. I’d had enough of this life, it was just too hard. I wrote letters to my children, texted a couple friends how much I loved them and swallowed 24 Ambien. I immediately knew I made a mistake, yet in a way still felt it was my only option. A friend knew what I had done and an ambulance arrived shortly thereafter. I spent the night in the hospital and was referred to a Crisis Stabilization Unit in Johnson City, Tennessee where I spent three nights. They adjusted my meds and referred me to counseling at Scott County Behavioral Health in Weber City, Virginia. I saw the counselor only a few times before moving to North Carolina. They treated me with medication for insomnia, anxiety and depression.

Dr. Abril started treating me February 2011 until I moved in July 2011. Dr. Abril ordered x-rays for my lumbar spine (8th time) and labs. She prescribed Enbrel for AS in March 2011. It made a significant improvement in my pain levels. I still had pain, but it certainly brought some relief. It allowed me to grocery shop again, on good days.

May 2011 we filed a Motion for Summary Judgment in US District Court. I was very hopeful that someone would finally approve my claim. June 2011 I placed our belongings in storage and moved myself and my children to my sister’s house in North Carolina. August 2011 I was approved for long-term housing and moved into an apartment. September 2011 was my first appointment with Jeannette Dillinger, FNP in Bakersville, North Carolina. She referred me to Tim Evans, also in Bakersville, for counseling and Dr. Jill McClory at Piedmont Rheumatology in Hickory, North Carolina. I had my first appointment with Dr. McClory in October 2011 where she ordered lab work and treated my symptoms with medication. I am currently being treated by her.

I received a letter dated January 11, 2012 stating that the US District Court denied my case. The judge declared my medical evidence insufficient and threw it out. I have never been referred to a court appointed doctor, nor given my right to a Consultative Exam. From the SSD website:

”In the absence of sufficient medical evidence from a claimant’s own medical sources, SSA, through the State DDS, may request an additional examination(s). These CEs are performed by licensed physicians (medical or osteopathic physicians), psychologists or, in certain circumstances, other health professionals such as optometrists, podiatrists, and speech-language pathologists. All CE sources must be currently licensed in the State and have the training and experience to perform the type of examination or test SSA requests.”

I have been denied this right!  I received a letter dated January 13, 2012 that my attorneys will not be continuing my case. I have called dozens of attorneys and no one will take my case. They all say the same thing, “We do not appeal to a higher court unless we have had the case from the beginning.” I can’t understand why this is happening? I paid into the disability system when I was working. Now that I cannot work I am being denied benefits critical to the survival of my children and myself. I would gladly see any doctor and submit to any test required to confirm my diagnoses! Why have I not been sent to one of their doctors?

Sincerely,

Amanda Fannon

February 17, 2012

AT THE END OF MY ROPE

I was at the end of my rope, nothing left to hang on to.  I was going through a painful divorce and pain had taken over my life. My days were mainly spent in bed. My children would come home from school and have to sit on the bed with me just to spend time with me.  I felt completely useless, like I was a burden to everyone around me, especially my children. No one understood my pain. No one understood what my life was like. I felt so alone. I had struggled with depression most of my adult life. I had PTSD from some bad experiences along with my constant pain and feelings of inadequacy to my husband and children.  This was the beginning of my second divorce, this one much more painful than the first. My first marriage was to my high school boyfriend. We were young and naive,  it was never meant to be.  But this time I had married my best friend, this time was for life. He ended up having an affair. Said he couldn’t deal with my illness, it was too much for him. He knew about it going into the marriage, but said he didn’t realize how hard it would be. That was heartbreaking. It was nothing I could work on, nothing I could fix. My diagnoses were Fibromyalgia, Ankylosing Spondylitis, Sacroiliitis, Degenerative Disc Disease in my lumbar and cervical spine, ruptured disc at L4-L5 and a pinched nerve at L5. I DID have a lot of pain and my doctors wouldn’t give me anything to help with my pain because of my age. I couldn’t work, couldn’t even grocery shop anymore. So when he left, I felt I had no on e to help me. My mother lived 45 minutes away, my sister lived in another state, my brother was in the Marine Corps. My children helped as much as they could, but there were some things they couldn’t do. I already felt guilty because they had to do so much. Children aren’t supposed to have to take care of their parents, not at that age anyway.

Sunday, March 6, 2011 was a particularly bad day. My children were gone to their father’s house. My soon to be ex-husband and I were arguing. I had lost the love of my life. I saw no future for me other than pain. What kind of life could I provide for my children? I was going to have to move. I couldn’t work. My doctors agreed that I couldn’t work but we were yet to convince the Social Security Administration of that fact, so I had no income. My child support certainly couldn’t pay the bills. I felt that everyone would be better off without me as a burden. I had had enough of this life. It was just too hard. I wrote letters to my children, texted a couple friends about how much I loved them, and swallowed 24 Ambien. I immediately knew I had made a mistake, yet in a way still felt it was what I wanted. I let a friend know what I had done and an ambulance arrived shortly.  I don’t remember much after that.

Even after my overnight stay at the hospital and 3 days in a Crisis Stabilization Unit, I still felt I didn’t want to be here. But in time that feeling faded. If not for the support, love, understanding, and advice of some wonderful ladies that I had met in an online support group, I don’t think I would be here today. I had some obstacles to overcome, which led to huge amounts of stress. I was going to have to move from my home but couldn’t afford rent. My sister and brother in law offered to let me move in with them until I could get on my feet, but that would mean moving myself and my children to another state. That would be a huge decision to make. Not knowing anyone but them, and being a burden (oh how I hate to feel like a burden). But in the end, that’s what I did. I packed up all our things, put them in storage, and moved in with my sister. I signed up for state assistance for insurance, food and housing. Some things didn’t go as smoothly as I had hoped. Lots of paperwork and waiting periods when changing states. But I only had to stay with my sister for one month before an apartment was ready to move into. We got all our belongings out of storage and now it feels like home. I still have struggles, of course, with money, pain, and even loneliness at times, but I can honestly say that I am happier now than I have ever been. My children adjusted well to the move and love their schools, I love the area, and my sister and I are closer than we have ever been.

I know there are others who have been in this dark place. I wanted to share my story to let you know that you are not alone. It is okay to feel whatever emotions you feel… sadness, anger, loneliness… But there is hope. Even if all you have is the online friendships of some people you have never met, you are not alone.

North Carolina United States of America

 


6 Responses to “A.S. Face 0302: Amanda Fannon”

  1. Dear Amanda,
    Thank you so much for sharing your story with us. I am at a loss for words. What a courageous and strong woman you are, and how kind and generous of a soul you are to share your triumphs in hope to help others through their darkness, that has been my main goal in this project. Of course to raise awareness but to show wer are not alone you don’t have to do this alone unless you choose to. Thank you so much.
    Sincerely Cookie

  2. Thank you for your courage and strength each day. There are people like these ‘Faces’ that understand and you aren’t alone.

    In Kindness,
    Jacquie

  3. Amanda just read your story & I must say I had tears in my eyes were did you find this strength from Ido not know . & such a young person as well .A.S is a horrible thing to have as I know to well I`ve had it for 43 years .17 when I started with it 26 when I was diagnose & had some of the problems you have had a long the way .so Ido no what you have gone though but unlike you my wife stayed with me & with me & 7 children to look after she as had her work cut out the many people on this web site & we pretty say much the same about our A.S & it a big problem not just to us but our familys as well & the sad thing about A.S is I don`t think many doctors know what we really go through with day to day pain & how can they you have to have A.S your self to know the real truth & like you I have been ignored & well not laught at but that smile that says you are having me on .tell you one thing I`m glad we have our N.H.S service and we don`t have to pay for our treatment & prescriptions if we are on social security I don`t know how your manage with all your health problems when you have no health insurence or not enough to cover your needs at least we don`t have that problem here in England .I wish you well & hope you can get on with your life without more problems & as a person with A.S I no this will not be easy . but all the luck in the world to you & your family. from Peter o286 England.

  4. God works in strange ways sometimes. You are so lucky to have three boys Amanda. FAR from you being a burden in their lives-I wonder what great things they will do in their future because you have AS. Do you suppose they will grow up into giving, understanding, sharing, caring, compassionate young men because of your AS. I wonder how many lives in the far future they will help because of your AS? I feel better knowing they will always be there for you. It’s time for you to have peace of mind Amanda. I sense the worse is over. WE know things can only get better.

  5. A BIG thank you to each of you. I cannot begin to tell you all how much your comments mean to me. I’m sitting here in tears as I write. I’m at a loss for words. I have made wonderful online friends, thanks to facebook. I don’t know of anyone in my “real” life that has Ankylosing Spondylitis or Fibromyalgia. Although I would not wish this pain on anyone, it certainly helps to know I’m not alone. None of us are alone ❤

  6. God bless you dear.
    I have not had half the problems you have had, and I managed to stumble into the correct Dr. with the help of my daughter, who is an RN. I was feeling helpless, lost and BETRAYED by the doctors who were supposed to be helping me. I did a lot of praying and crying and complaining the first four years of RA/AS/Reiters Syndrome. I feel so blessed to have the support of my children, doctor and husband.
    You are an amazing woman! I am adding you to my prayer list, which grows every day. I thank God Almighty for His help in getting me through the beginning of all of this, and of course getting me the right help. I can’t imagine staying where I was when all the doctors said it was nothing at all. I will pray that you, too, will also find the right doctor who will work with you as your AS changes daily/weekly/monthly.
    PS. My doctor is not a specialist…he is an MD. He instantly knew what I was talking about when I very first met him. He was the answer to my prayers. And i WILL pray for you to find a doctor who is as good as he is.
    Suzanne

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