I got a call a few minutes ago from my mom telling me to check my email. “I sent you something,” she said. “I read your blog posts about the fibro and I started to leave a comment but it turned out to be pretty long and I thought you could use it for your website.” I checked my email and found a tear-jerking letter about a mom’s plight to find relief for her ailing daughter, up against doctors who wouldn’t touch her child’s bone tumor without $50,000 cash because she had no insurance. Here’s the story from my mom’s perspective:
Her Silent Strength
By Marla Jo Zeller
1992: The pains were coming more frequently now. Mostly in her back. “Oh God,” I prayed, “Not another bone tumor!” It mentally took me back to a couple of years before — the screams in the middle of the nights. Through my mind jogged the whole horrendous experience: having no one to turn to, feeling helpless to save her from her own body, and just wishing I could take it into myself just to get it out of her…
1990: There was nothing I could do to relieve her agony. Being a nurse, I had researched all her symptoms and knew that she probably had a bone tumor but without insurance, every doctor I took her to put it off to ‘growing pains’ and sent us home with order to “Take Tylenol and it’ll go away.” But it didn’t. The blood curdling screams in the middle of the night were a true sign/symptom. She was favoring that left leg, hardly putting any weight down on it. There were signs of atrophy already setting in (it was smaller than the right) due to non-use. I don’t know how many doctors I took her to but finally one day I took her to a ‘doctor friend’ of mine and just walked right into his office and told him I wasn’t leaving until he ordered a topography (an in-depth x-ray) of her leg.
That’s all I wanted: Some proof that this was more than growing pains. I knew it and I felt all these doctors knew it but because we had no insurance they were not willing to help us because I didn’t have the cash to pay up front. I literally stood over this ‘doctor friend’ and rudely insisted on him writing this order for the xray on a prescription pad for me to take to the x-ray department. I wouldn’t leave until he did it. I had a few choice words along with the begging. I didn’t care what it took to get what my baby needed; a start to some relief. Finally he gave me the order and we went and got the x-ray. Two days later we went back to him and he showed me the xrays and sure enough it was an osteoid osteoma: a benign bone tumor that causes excruciating pain and which would continue to grow and malform the legbone unless removed.
I went to the finance dept of the hospital and found out that they wanted almost $50,000 before they would touch her. I was desperate. She was in agony. There were days that she would be walking along and just fall down because the pain was so unbearable she couldn’t bear the weight on that leg. I went to an attorney and told him to file bankruptcy — that I had to save every penny to get her that surgery. God works in mysterious ways. Instead, that lawyer gave me a phone number to call: a man who was a Shriner. It turned out that this man was a long time friend of my parents, Kat’s grandparents. I had to write a letter to the Shriners explaining our situation. He got it to the right people and within a couple of days I received a phone call. They accepted our case and assured me she needed and would get the surgery without it costing me a penny. She would finally be free from the pain. No more pain? Praise God!
It was a long, grueling process that involved removal of a large portion of her bone, a cast from her toes to her hip, wheelchairs, crutches, trips back and forth for therapy, and trying to no avail to keep her stubborn self from walking on the non-walking cast much too soon :) But several months later, she was happy go lucky and I was grateful.
1992: The bone tumor had been gone for a year, but the pains had come again in her back. I was frozen with fear. More bone tumors? More surgery? At least we had the Shriners. They had told us we could count on them for anything skeletal until she turned 18 so I set up another appointment to take her back to Shreveport, LA. After they did the x-rays and tests, the doctor called myself, Kat’s step-dad, and Kat into a room and said bluntly, “This is not a tumor. This is a disease that usually affects grownups that are in high stress positions. It is called Fibromyalgia. She is the youngest person I have ever known with his condition. She is under tremendous amount of stress. Now who has done this to this child?” He looked directly at us. Without hesitation, Kat’s step-dad said “I guess that would be me.” And no one argued with him. Needless to say, I divorced him shortly thereafter. That is another story that isn’t worth the time.
Since then we have learned about Fibromyalgia. It usually doesn’t affect younger children and is exaggerated by stress. She has bravely lived with this debilitating disease. I’ve watched her have to give up things she loved, like gymnastics, but growing more and more tolerant to her symptoms, not letting it stop her from having my 5 beautiful grandchildren, taking care of them, supporting them in all of their activities, making their lives full and fun. She has had several businesses at the same time spending long hours a day on each one all the while taking care of house and home and family and everything that goes along with it, all the while battling the pain. I have begged her to go to doctors and get some Lortab or something else to take care of the pain but she always refused to take medicine saying that she has a high tolerance for pain and she didn’t want to get hooked on anything. She did try one medication once and it effected her adversely and then was pulled off the market for killing some people, so her point was made.
I have seen her work long hours at her computer all the while hurting in her back and neck and legs, taking Tylenol that didn’t really help. I have watched her lug her children around to all of their activities while her body screamed in pain and she never said a word to anyone. You would never know she even was in pain. She just kept it to herself. Unless you knew her very closely you wouldn’t know anything was wrong. But there were those little hints of changes in her voice tone, words she used, facial expressions that to me were dead giveaways that the pain was there. I would question her and she would say, “I’m fine, Mama!” Liar. :) She wanted to be strong. And she is strong. But this is a mean, devastating disease. It doesn’t get better. It only gets worse. And now it has gotten to the point with Kat that she has finally started taking some pain meds. She got 15 pills back around the first of the year for an ear infection and she still has 1 left as she’s rationed them, taking half of one here and there when she can’t stand it anymore.
She will be in tremendous pain and not take one, scared she’ll run out and need it worse at another time. It breaks my heart and frustrates me all at the same time. Some days she can’t even get out of the bed. And its not just pain but fatigue. I know how hard that is because I too have Fibromyalgia but not to the degree of hers. I have always taken medication for my pain and enough that I don’t hurt unless I am just out of my medication. There aren’t many doctors around where I live that believe this is a real physical condition and the ones that do will only give you medication once in a while so taking it has to be regimented.
I have prayed for so long that Kat would break down and get some professional help and take some medication to give herself some relief. It is hard watching your baby suffer and that is what she has done, yet she never complains. Me? I have a low tolerance for pain — I can’t function. I don’t know where she gets her strength from, but it isn’t from me. I’ve listened to the change in her voice just from our phone conversations over the last few weeks. She doesn’t have energy in her voice anymore. She’s sullen and more worn out than usual. After reading her blog today, I believe that she has finally gotten to the point that she cannot handle it anymore. She reminded me today about a lady we knew years ago who was 35 and was bound to a wheelchair by her Fibromyalgia. I keep thinking about her. I don’t want Kat to be like her. I want her to keep up with her projects and her children and her husband and her mother and step-dad.
She now is working on getting her medical records from the Shriner’s Hospital so that she can get an appointment to see a pain management physician. Even that is going to be difficult. It is not just cut and dry. What helps one person doesn’t necessarily help another. And what complicates things is that Kat is stubborn and she doesn’t want to take something daily to prevent her pain. She worries about side effects and damage to organs from prolonged use. She just wants something to take when she feels that it’s necessary — something she doesn’t have to ration out or wait until it’s so bad that she can’t function. I have to admire her for that but honestly I don’t understand it. As for me, if I have pain, give me all the pills I need that will prevent it and all the ones to take to make it go away or I will mow you down to get them.
I keep a fulltime job, I am a nurse now for 30 years and I intend to keep working. The pain is getting worse for me as well and it is getting more intense in certain areas. I am going to have to go to a pain management clinic as well. As soon as I get to Atlanta to help Kat while my wonderful son in law is out working offshore I will probably go to the same one Kat goes to if they do her well. I feel bad when I think that she probably got this disease from me, and thinking about my granddaughter, Talia, and her headaches I pray to God that this hasn’t trickled down to her. It was unbelievably horrible to hear and see my baby in so much pain when she was a child. I heard her cry and ask me so many times “Mommy, why is this happening to me?” How could I answer? What can I say now? I am just glad that she is finally going to get some relief and hopefully find life without constant pain.
God bless you, baby. I love you.
I love you, too, Mama. ;) Thanks for always being there for me and fighting for me. You made me the fighter that I am whether you know it or not. You may not think I got my strength from you but in many ways, I most certainly did.