Fibromyalgia: A Mom’s Perspective
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 Zeller1992: 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.
Little Girls Wearing… THONGS???
Tonight, I ran across this post at MomDot.com which was a result of this previous post, both of which addressed the issue of young girls being allowed to wear thong underwear. Needless to say, I was pretty disgusted at the idea… and I wondered what MY readers felt about it. Just for the record, here is the comment I left {yes, I realize it’s long. I’m wordy like that}…
For once in my life, I won’t write a book in a comment. I will just say um, NO. A child has NO business wearing a thong unless the word is plural and intended to refer to a pair of flip flops. Period. That dad has lost his mind. Thongs don’t make a person any sexier than normal underwear? If that is the case, why do we not see porn stars sporting granny panties? Um, duh. And walking around the house in a cami with just their underwear on? HUGE no-no.
My 9 year old has a bad habit of putting on her panties (NOT thongs, might I add – not even BIKINI briefs at this point!) and a tshirt … when she comes parading through the house, my husband quickly tells her she better go cover her body. (He also tells her ‘next time’ she comes walking through the house without her shorts on, she’s getting a spanking, but he’s a big softie and that never happens – he just says ‘next time’ again) LOL
I just posted a blog the other day about nudity around kids… I think PARENTS and same-sex children is not a big deal up to a certain point… like you said, when the child becomes uncomfortable. In my opinion that does NOT extend to step parents, PERIOD. But children, IN MY OPINION, should not be seeing opposite-sex parents nude – my husband does occasionally walk through the house in his boxers, but not the ones that are fitted – only the ones that look like shorts, and only if he’s on his way to FIND some actual shorts to put on.
Some things are just touchy and this is one of them. Lines MUST be drawn and not crossed. A little girl that old parading around in THONGS with her behind hanging out and a camisole top??? INAPPROPRIATE in every sense of the word. A little girl that age WEARING thongs AT ALL is ridiculous. What for? To hide her panty line? And that matters WHY at that age? You are okay with your child being concerned with how her BUTT looks to the outside world? That in itself tells me that you’re not worried about your child being a target for a child predator – that is sick to allow a CHILD to present a provocative image like that, and no matter HOW you spin it, thongs are seductive and suggestive to say the LEAST!
Dang. I wrote a book after all. You can imagine how horribly I fail at Wordless Wednesday. :( lol
… AND …
By the way, I didn’t wear a thong until I had A KID already… and my daughters will not be allowed to wear thongs until my husband gives them permission… which will probably be when they are, like, 35. LOL
So, what do YOU ALL think about this issue? I’m curious as to what views everyone else has, and what your reasons are for them… Drop me a comment and let me know what you think!
Disgusted!! Parents, WHY??
Oh my GOSH. This turns my stomach. It’s like an elementary-age clothes-on ORGY! I’m sorry… but somebody should seriously be in JAIL for this video. There comes a point where just because the clothes aren’t off doesn’t mean it shouldn’t be considered child pornography.
It’s not only the fact that some wacked-out sicko will probably get all hot and bothered by watching this video, but they are setting the stage for a whole new generation of young girls who will think it’s perfectly fine to compromise themselves sexually and this is not cool. Also sending the message to these YOUNG boys that this is what girls are for – backing it up. What is WRONG with people?! The adults and other children are VOTING on which little girl can grind the nastiest on which little boy?!
My spirit is crying watching this… mouth wide open in disbelief. Ugh. How could ANYBODY thing this is cute? {I mean, of course, aside from a pedophile!} Lord, have mercy… :(
This is just SICK!
I don’t know where this is… doesn’t sound like English they are speaking.
But, ALL of these parents should be under investigation.
{Thanks to COURTNEY @ MOM ON A MISSION.}
Hillary SKANK: Nudity Around OTHER People’s Kids?!
I ran across this post today: What About Being Naked in Front of a 6-Year-Old? Hillary Swank…on sleeping naked … and it REALLY struck a chord in me which led to these tweets:
Why is this such a big deal? Well, for obvious reasons:
- This is NOT her kid.
- She’s naked.
That pretty much sums it up in a nutshell. As a mother, I can’t imagine being okay with ANY woman {or man} being nude in front of my children besides myself and my husband – their father. And even when it’s the parents, I mean… when changing clothes or getting in/out of the bath… that’s one thing; but first thing in the morning? Even to a child, that’s highly suggestive. Kids go to school. Kids hear things. Kids know MUCH more than you think they do. Trust me. Hillary Swank is the girlfriend of this 6 year old boy’s dad. She’s not even the wife – which honestly wouldn’t make it any better because… well, see reason #1. And then, reason #2. That pretty much explains it.
I have two step sons and I would never DREAM of doing such a disrespectful thing! And, I would be willing to bet that if I did something so distasteful their mother would be ready to shoot me. Needless to say, if this were MY son there would be some SERIOUS issues brewing here. I mean, to a child there has got to be some intense confusion behind walking in and seeing this woman naked in Daddy’s bed EVERY morning… I don’t care if she says he doesn’t notice. He’s 6. He’s a boy. HE NOTICES.
So, all of this brings up this question: WHEN DID PARENT’S STOP BEING PROTECTIVE OF THEIR CHILDREN?! When did it become okay for children to be privy to the fact that daddy’s lady friend sleeps in his bed – NAKED!? As I said, even if they were married – which they ARE NOT – there is no justification for any person to be nude in front of a child that isn’t THEIR child. I can’t wrap my mind around why anyone would think this is acceptable. Anyway, I’m curious as to what everyone ELSE thinks about this situation. Do you think it’s being blown out of proportion? … Do you feel that kids these days are exposed to WAY too much?
It’s as though there is no limit to where sex ‘fits’ in this society we’re living in. Now even our CHILDREN are being conditioned to believe that sex is beautiful… sex is natural… blah blah freakin blah. Seriously, people. It’s getting out of hand. Of course, that’s just MY opinion – what’s YOURS?
Oh, and Hillary – I sure hope that Mama Bear knew about your A.M. tendency to be apparel-ly-challenged or I’m thinking you were in dire need of an eye-steak when she read that copy of Marie Claire :) DUMB CELEB QUOTE, indeed.
Autistic Love and Basketball :)
As I was trying to make it through the 700+ unread blog entries from all the super-wonderful blogs I’m subscribed to, I ran across this post made by Erica at 5MinutesForMom.com and I literally CRIED watching the video she featured. I couldn’t go without sharing it with you all. It reminded me of the movie Radio, for those who have seen it. And, yeah… I cried when I watched it too. :)
As a parent, my heart can’t help but be touched by stories like this.
I can only hope his mother wore waterproof mascara to the game :)
Sharing an article
I wanted to share this article I got from a ministry group I am in… I really enjoyed it; it was written by a man named Gregory Dickow:
Today, we are fasting from the thought: “I feel like a fake; I feel like a hypocrite.”
For centuries, the devil has been weaving defeat and condemnation into people’s minds by getting them to feel like they’re not really saved, or they’re saved, but they’re not the person they pretend to be in public. Stop letting the devil rob you of your joy and peace through this lie.
We all at times have felt like hypocrites. We say we believe, then we sometimes doubt. We say we love God, but feel at times numb. We are supposed to “walk in love,” but we feel like hurting someone sometimes. Anybody been there besides me?
Paul the apostle knew this battle, and today we’re going to join him in victory.
He said, “For I know that nothing good dwells in me, that is, in my flesh; for the willing is present in me, but the doing of the good is not.” (Romans 7:18)
Here is the secret to overcoming the feeling that you are a hypocrite or a fake:
- Recognize the battle that you’re in. Your spirit (inner man) is holy and wants to do what’s right. Your flesh, however, doesn’t. One translation said, “I have the desire to do what’s right, but I cannot carry it out.” Jesus also said, “The spirit is willing, but the flesh is weak.” (Matthew 26:41) Before we’re done, your spirit is going to win this battle!
- Realize that you’re not alone in the battle. EVERYONE deals with this. The fact that you realize you want to obey God, but are honest enough to admit you often fail, is NOT hypocrisy. It’s “truth in your innermost being.” (Psalm 51:6) The part of you that doesn’t want to obey God is not the real you – it’s your flesh.
- Don’t worry about what other people think of you. Only the “self-righteous” think they have it all together. They think they are better than you. They think that you’re weak and they’re strong. But truly honest and humble people realize the battle and understand your struggle. Look to Jesus as your High Priest. That means, He goes to God with His blood, and says, “Father, this one has been cleansed by My blood. This is your child, and they are holy NOW because they are washed.” He goes to the Father on our behalf and paves the way for us to be forgiven, accepted and righteous—IN HIM. Also, Hebrews 4:15 says, “We do not have a high priest who cannot sympathize with our weaknesses, but one who has been tempted in all things, AS WE ARE, yet without sin.”
- Take off the mask. You don’t have to be “Miss Perfect” or “Miss Never-look-flustered” or “Mr. Always has it together.” There’s something liberating to just be able to be transparent, and not have to pretend you have it all together. That doesn’t mean, you go out and sin deliberately. It doesn’t mean you throw all caution to the wind. It means, you humbly admit, like Paul the apostle in Romans 7:19, “For the good which I have a mind to do, I do not: but the evil which I have no mind to do, that I end up doing.” He’s not making a bad confession here. He’s making an honest one. THEN…
- Declare your victory in Christ! Romans 7:22-23 Message Translation says, “I truly delight in God’s commands, but it’s pretty obvious that not all of me joins in that delight. Parts of me covertly rebel, and just when I least expect it, they take charge.”
- It’s ok to need a Savior! Paul asked: Who can deliver me from this condition? Romans 7:25 says, “The answer, thank God, is that JESUS CHRIST CAN AND DOES…”
- We walk by faith, not by sight. 2 Corinthians 5:7 says you can serve God, now, even when you feel like a fake. Believe what God says about you, and don’t bow down to what your flesh and the devil try to tell you about your weaknesses, contradictions and mistakes.
THINK IT & SAY IT:
I recognize that I am in a battle between my spirit and my flesh. I will no longer give into the lie that I’m a fake or a hypocrite. I have a flesh trying to control me; but my spirit truly wants to obey God. I yield today, to my spirit, by yielding to GOD’S WORD.
Jesus Christ has delivered me from the wickedness of my past and my flesh. I am forgiven. Everything in me that doesn’t want to obey God IS NOT THE REAL ME. The real me is made in the image of God, and is more than a conqueror through Jesus Christ my Lord!
We’re back to burning churches?
This breaks my heart.
Burning of black church ruled arson
Authorities are investigating if it was a hate crime
SPRINGFIELD – The fire that destroyed a church being built for a predominantly black congregation was intentionally set, law enforcement officials said yesterday.
The timing of the fire at the Macedonian Church of God in Christ building early Wednesday morning – just a few hours after Barack Obama’s landmark victory – caused the church’s leader, Bishop Bryant J. Robinson Jr., to question whether it was a hate crime.
But federal and state investigators have not been able to determine from the evidence whether it was a hate crime, State Fire Marshal Stephen D. Coan said at a news conference attended by federal, state, and local law enforcement officials. All potential motives are being investigated, he said.
“We know it’s arson. We know it’s a very serious crime and we’re going to do everything we can to identify the perpetrator and to prosecute that person or persons responsible,” said Hampden District Attorney William M. Bennett.
He said whoever set the fire could face federal charges, depending on what the investigation uncovers.
“Arson is a particularly heinous crime,” said Springfield Police Chief William Fitchet. “And when a church is targeted, it tears at the very fabric of our community. It attempts to destroy the doctrines upon which the Republic is built.”
The church is moving from King Street to a new building on Tinkham Road, which was about 75 percent complete when the structure was set ablaze.
The fire that began shortly after 3 a.m. caused about $2 million in damage, leaving a skeleton of wooden beams and tin roofing surrounded by piles of debris.
Robinson said yesterday that he was burdened by the knowledge that the congregation had been “delayed in the fulfillment of a vision,” but expressed confidence that the church would surmount what he described as a tragedy.
“We have not been denied. We will build that church,” said Robinson, sighing as he leaned on the lectern. “Again.”
Mayor Domenic Sarno of Springfield extended condolences to Robinson and his congregation and called for a show of public support to “send a message” condemning arson.
Coan declined to say whether authorities had any leads on suspects. The officials did not detail the evidence that led them to suspect that the fire had been intentionally set.
“Let’s move forward from today and collectively solve this horrific crime,” said Coan, who encouraged the public to contact local police or the Arson Hotline, 1-800-682-9229, with any information. A reward of up to $5,000 is offered for clues to solving the case.
State Police, the FBI, and the Bureau of Alcohol, Tobacco, Firearms, and Explosives are assisting local police and the state fire marshal in the investigation.
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