Not talking interior design today… And I have been waffling over whether or not to even share this so openly my personal story, but Glenn Beck coming forward and (mostly) so openly sharing his story of struggling with chronic pain, which he didn’t come right out and say the “F-Word” (Fibromyalgia) in his special he just aired on his network, he called it an auto-immune disorder, but I did find on his website, www.theblaze.com, a few references to fibromyalgia and the fact that he possibly had it and this gives me hope that it might break down the stigma attached to this debilitating disease.
Because I hurt. Almost everyday I hurt… just to varying degrees. Or I used to anyway. I don’t very much anymore… More on that later.
Sometimes it’s like the fly-that-you-can’t-get-out-of-your-house kind of hurt… more annoying than excruciating… and other times it feels like someone-filled-my-insides-up-with-gasoline-and-lit-a-match hurt. The kind of hurt where you sit there sobbing as silently as you can, so you don’t wake up your sleeping husband in the middle of the night hurt, when you’re debating whether or not it would be better to just lay perfectly still or actually move to get up to take one of my “for emergency only” pain killer hurts.
I, like Glenn and so many others, have fibromyalgia. And unless you know me really well, I do the very best job I can to hide it.
It is no bueno… and even worse. There are loads of people who still don’t believe it is a real disease.
“It’s all in your head.”
“You’re a hypochondriac.”
“Mind over matter.”
“Suck it up.”
“There’s not much we can do for you.” (Doctors)
Those are phrases anyone who has ever suffered from this horrible disease hears all the time. All very, very frustrating. Because I consider myself a very well adjusted, grounded individual and to be told time and time again that you are making it up for attention is beyond frustrating. It’s demoralizing and humiliating. This can be one of the loneliest diseases out there.
I joined an online fibromyalgia support group so I could talk to people who understand. It absolutely shocked and saddened me how many people on a daily basis talked about ending their own lifes. How on a daily basis I read time and time again women’s husbands telling their wives they were hypochondriacs just seeking attention… And/or leaving them all alone in their agony and pain. It is almost painful to be apart of the support group because it hurts my heart to hear such things. But I get it. I understand.
If I didn’t have the strong foundation and belief in Jesus Christ and the knowledge that he loves me and supports me on those really tough days, weeks, and sometimes months… and if I didn’t have so much to live for… an awesome family who are so good to me. I would want to close my eyes and never open them again. You just want the unrelenting pain to end. Or at least that’s how I used to feel.
I was first diagnosed with fibromyalgia back in 1997 when I first started college. It was back when it was really considered a garbage diagnosis… it’s improved some since then. There needs to be many more strides in helping people to understand it’s legitimacy. This is another one of the reasons I finally have decided to share it so publicly on my blog. The blog that I loved so much, but had to put on hold while I got my health in order.
But I get it. I really do. I still have a hard time accepting my own diagnosis. There’s a part of me that still believes that the doctors just haven’t figured out the real issue and so they’re labeling me with a diagnosis of fibromyalgia to “satisfy” the hypochondriac (me) before them. I get it because there really isn’t a test wrapped in a nice pretty little box with a ribbon on top that confirms what someone with fibromyalgia already knows… that something is legitemately wrong.
That the chronic pain with the firestorm of other symptoms is not just in their head, but REAL. Very real. You can test for rheumatoid arthritis, you can test for multiple sclerosis, you can test for thyroid problems, you can test for lymes disease, lupus, celiac, etc. How do I know? I have been tested for them all. All came back saying: no, No, NO! The more “no”s, the more frustration… the more crazy we fibromyalgia patients get treated and the less likely the doctors/loved ones take us seriously.
So I put the diagnosis behind me. I didn’t believe it because no one else did. Not even the doctors who diagnosed me, in my opinion. I went through periods of health ups and downs. Right after the birth of my 2nd child, I went through another flare up and another myriad of tests only to draw a blank. Then we moved to Arizona where for the first time in a really long time I felt good. Really good (sans Monsoon season- which is thankfully pretty short). The weather there sang to my body and soul. Because I felt pretty good I let it go.
Then we moved to Maine for employment… apparently one of the worst places you can move to if you have fibromyalgia or an autoimmune disorder of any kind. Whether it is the humidity, the cold, all the clouds, all the barometric pressure changes… this climate gave me a reality check like there is no tomorrow. It came back with a vengeance and a fury. I have never hurt so bad and had such an onslaught of symptoms ever before. It was like the god of pain and crazy symptoms was laughing at me. So yet another round of expensive tests to draw a big fat deuce. Nothing. Nada. Zilch. I am the sickest I have ever been in my life and there was not a single thing abnormal from every single test.
Well, they did find a cyst in my hip bone that lead to months and months of anxiety and stress thinking that there was a potential I might have bone cancer… due to a family history… a legitimate need for concern and vigilance… only to turn up with it just being that. A simple, harmless cyst. Relief of course. They also did find a hip injury and a biomechanical problem with the way my pelvic structure is built, but that took months and months and did not explain the widespread pain and myriad of other symptoms. Or the fact that this has been going on for a while now. And so then the diagnosis came again. Fibromyalgia.
Time to get through the denial I had been living in for so many years and face the fact. We may not know and understand fibromyalgia, and there might not be the picture perfect test for it, but it is real and anyone who thinks what I have experienced off and on for the past 17 years isn’t real… won’t be met with fury (because I do strive to be Christ-like), but a level of firm disagreement.
Thank heavens I have been blessed with such an awesome family and support system. They are what makes living in Maine great, despite the previously mentioned extreme disadvantage it puts me at. I try to grin and bear it and hide the way I feel to make everyone around me more comfortable. I don’t want to burden them. I don’t want to come across as a whiner or complainer. I try to bear my cross quietly to the best of my ability, but there are still some who’ve seen the ugly. The tears of pain and frustration. Thank heaven for them and their love and support though.
Heavenly Father has asked me to carry the cross of a chronic pain condition because they knew I could. I would take this cross over so many other things. And I know He either have a sense of humor, or had a better way in mind for me, as far as how to treat the pain, the hailstorm of other symptoms, and mood related symptoms that accompany this awesome disease… because they gave me a chronic pain condition and also made me allergic to all classes of pain killers except for one. Which only has one possibility available through prescription. One drug (demerol), which is pretty hard to come by, and has to be special ordered in mostly because it really isn’t prescribed much outside of hospitals. Also, I am just overly sensitive to all prescription drugs on a whole.
But oddly, I am grateful.
It has absolutely forced my hand and finding alternative ways to treat this very debilitating disease. I am so grateful that The Lord saw fit, in a world where prescription drug abuse is rampid, in a world where the list of side effects of the Rx drugs are longer than the actual benefit of taking them. He has forced my hand, but also given me an “out” in case of an emergency. I have personally witnessed the devastating toll of addiction.
I did not feel good inside my soul to take things that altered my mind and made things fuzzy. Lights on, but nobody home. No thanks. I love my family too much for that. That is not to knock anyone who has to take prescriptions to live and endure. This is just my very personal decision.
It did not feel good to me that every single time I went to the doctor I had yet another prescription to add to the list. I was on 6 prescriptions in the thick of things with the very likely reality that there were going to be more added. And to be honest… I really didn’t feel better. It was like they would treat one problem and that would get replaced with another.
I knew there had to be a better way and I was blessed to have the best resource available to me. A sister in law who also happened to be diagnosed with Fibromyalgia and had been diagnosed for 20 years and who was a fabulous resource for me. One phone conversation with her not only made me feel SO much better about my diagnosis, but pointed me on such a better path to overall health. So I guess you could say she changed my future and I will be forever grateful to Kristen for that. I think I actually cried on the phone during our conversation and afterwards too. She felt like an answer to a prayer and I know she was. I was looking for a better way and she provided that.
I am going to share the guidance she gave me… And some things I figured out on my own.
I will say we’re now into November and I am not flaring and am feeling very optimistic that I will survive the epic Maine winter just fine, maybe not scot-free, but I think I will be pretty good, as long as I stick to the plan… Which I will share next in Part II tomorrow. So if you’re interested in how I’ve gotten off all prescriptions and even ibuprofen and even had some extra energy for the past 9 months, check back!