Carrie is a Fibro Warrior that I met online. I asked her to share a bit of her story with all of us.
When were you diagnosed?
Had symptoms for fibro since college 18-20yrs old but was tested like a guinea pig until finally diagnosed correctly at age 37 in 2012.
What lead up to your diagnosis (symptoms, dr visits, etc)? I have Pseudotumor Cerebri, which was found during a routine eye exam in 2008. The English version: From what I understand is that I have fluid that’s putting pressure on my brain. We were told, this is causing problems for my optic nerve, which will continue to get worse as I age and I will continue to go blind. I’ve already lost sight in the lower left section of my eyes. There weren’t any signs of this happening, and I’ve had eye surgery to fix a lazy eye when I was about 12 but nothing since. My eye doc started tests and was going to admit me to the ER when he was able to work me in to see a Neurologist. Neurologist did some more tests including an MRI and a spinal tap. He started me on Diamox which is used to treat seizure patients.
All my life I’ve had headaches. Had a car wreck when I was 19. A car literally ran me over when I was sitting still behind 2 other cars and a tow truck. Hit me from behind at 55MPH. I should be dead. The Lord works in mysterious ways and I survived. That’s when I started seeing a neurologist and they put me on the latest and greatest medicine then, which was Topamax. That was 1996 I believe and I still take it for migraines to this day. Also for the bulging disc that wreck gave me.
Also my feet swell so big I can’t wear shoes sometimes. I started having tests done in 1999. Ultrasound doppler, Nerve Conduction Study (NCS) which is a fancy term for electric shock to test my nerves which I will never let them do to me again. Had I known, they wouldn’t have done in the first place! The nurse that did the study couldn’t get a reading and kept increasing the amount because I have large legs. Fibro and electric shock do NOT mix well! Only they didn’t know I had fibro at the time now my legs are so sensitive even wearing pants or a skirt hurts. I limit my salt sodium and caffeine intake to help with the swelling and my legs are constantly elevated, so I’m restricted to my bed. I can get up but walking feels like I’m barefoot on glass. My legs have given me problems since I played AT basketball as I wasn’t very good back in 5-8th grade. I kept telling my parents my legs hurt but they thought it was growing pains.
Were you working at the time?
Use to work and had since I was 16 yrs old. Even though my parents could afford to give it to me they instilled a work ethic in both me and my brother. The world doesn’t owe you a dime! They said it all the time. That’s why being in this bed has been hard. I’ve been fired 4 times from various jobs. I asked to be reassigned and they wouldn’t do it. The last I was so stressed out by my boss that my blood pressure was 163/111. And that’s on BP medicine! It’s a wonder I didn’t have a stroke. I’m not at the place where I can forgive that man yet even though I know it’s wrong and hurting me to stay mad. I’m stubborn. Haven’t worked since my mother passed in 2007. Find it very hard to concentrate even to try and do freelance work.
How Long Have you Been on Disability?
I’ve only been on disability since ’09, I think, but I’ve been unemployed since ’07. That was due to clinical depression after my mother died on March 10, I lost my job that April, my mom’s mother had a stroke that August, a friend’s mom passed that month, another friend was diagnosed with MS that summer, and I literally had a meltdown.
What was your family life like?
Was engaged before but I thank God every day that marriage didn’t happen. On January 10, 2004, I married the most kind man with the biggest heart who truly loves me! All I have to do is look in his eyes and see the love is there. He is the rock that keeps me grounded. He helps bathe, clothe, fixes my meals, does all the chores, and loves me unconditionally through all this sickness. I can’t help but love him so in January 2014, for our 10th anniversary, we are renewing our vows and commitment to each other. My only regret is the children.
Was engaged before but I thank God every day that marriage didn’t happen. On January 10, 2004, I married the most kind man with the biggest heart who truly loves me! All I have to do is look in his eyes and see the love is there. He is the rock that keeps me grounded. He helps bathe, clothe, fixes my meals, does all the chores, and loves me unconditionally through all this sickness. I can’t help but love him so in January 2014, for our 10th anniversary, we are renewing our vows and commitment to each other. My only regret is the children.
I always thought I was supposed to be a mother. Been caring for kids, OTHER PEOPLE’S KIDS since I was 5 yrs old. Had to “retire” from babysitting at 20; people were calling me all the time to watch their kids. So last year when my neurologist told my husband and I that if we had kids I may not even make it full term to delivery my heart sank. All I’ve ever wanted was to be a mother. My husband has of course been wonderful about all of it. He tells me not to worry. Things will be OK and we can adopt, although it would be nice to have our own.
Do you still plan to adopt?
How did your family initially handle your illness?
My mother was on her deathbed so I doubt she knew at all. Rest of my family acts like I don’t exist. My daddy will drive 3 hours to see my brother but he can’t driver 45 min across town to see me. Says I should come see him instead. He came to help my husband move my MIL and while he was here, he came into the bedroom ONCE, only to ask why *I* was still in the bed with everyone else working.
Before my mother and my Mammaw died my family was a lot closer. My in-laws, not blood related family, care more or expresses their care more to me than my own family. Pretty sad but it is what it is and I have tried to change things and all it does is backfire, so screw it.
What do you feel is the most challenging aspect of Fibro?
Most challenging for me is being able to get around and function like a normal person, and do daily activities. CONCENTRATION: I had “shiny object” syndrome already and all this sickness has made it 10 times worse. People close to me are use to it but those that aren’t usually laugh. I’m oblivious.
Most challenging for me is being able to get around and function like a normal person, and do daily activities. CONCENTRATION: I had “shiny object” syndrome already and all this sickness has made it 10 times worse. People close to me are use to it but those that aren’t usually laugh. I’m oblivious.
What have you found the most aggravating issues with Fibro?
Panic attacks are the worst, migraines, I forget how to spell everything and that makes me mad as an ole wet hen because I use to be the best speller! I won a spelling bee!!! It’s 3 and 4 letter words not these huge 50cent words that I can’t spell. Those I have no problem with!
Panic attacks are the worst, migraines, I forget how to spell everything and that makes me mad as an ole wet hen because I use to be the best speller! I won a spelling bee!!! It’s 3 and 4 letter words not these huge 50cent words that I can’t spell. Those I have no problem with!
I forget what things are called. I remember the first time that happened it was a strawberry. I picture it in my head and usually my sweet husband is with me so he is use to this. I just say what I see in my head red juicy or whatever and he has been really good at guessing. Names are the worst. No way he figures those out. People use to think I was just dumb and made fun of me for doing that.
The weight gain has been the most depressing. I was down to the same weight I was when we were married and now I gained it plus more back. The tingling and burning in my feet drives me crazy! Pain is always there but there are degrees and levels of pain. My husband and I developed a system to tell how I was doing that day. Scale of 1-10 means jack to me it’s too frickin broad! Docs are so stupid. So I came up with my own based on a stop light.
RED = horrible day. Hurting so bad I can’t get out of bed except to go to the bathroom.
YELLOW = A pretty good day. Pain is manageable and not too bad.
GREEN = This is the day we all want. Life is great! Lots of energy lets go shopping!
BUT I’ve learned that the energy burns out very fast. Just because you start out green by the time you had a bath you may end up all the way in the red zone. Baths are energy zappers!
What (if anything) have you found/ done that has improved your symptoms?
Besides taking a deep breath and counting to 10? I’ve bought a hospital chair for the bath and also a curved shower rod so I have more room when I sit in there. One of those shower heads that comes off is a must have! Don’t stop and collect $200 go straight to the hardware dept and get one! Also I’ve applied for handicap sticker so I can park closer, but on my good days I will walk. We had to purchase me a scooter when I fell out into oncoming traffic for the 3rd time. How many chances does one person get? Broke my foot once when I fell like that. I drink a gallon of water a day and cut down on cokes. Yes literally a gallon every single day! My skin is dry from the meds and drinking water helps but it’s not enough my eyes still dry out. We mounted the TV on the wall so I can see it instead of in the entertainment center.
The absolute worst thing was having to give up my shoes! Everything has to have a rubber sole now and my cute sandals do not. I’m not over that yet.
What is the best advice you’ve received regarding Fibromyalgia?
I’m not crazy. It’s not all in my head. I’m not alone. There’s a lot of people just like me. And drink water, drink water even if you don’t like it, learn to and then drink some more. I carry water with me EVERYWHERE and I’m constantly drinking it because my mouth dries out. Tried the Biotene products they help, but they don’t cure it.
What was the worst advice that you followed?
One of the first neurologist I went to Dr Wilkerson in Brandon MS told me he didn’t see me getting better unless I lost weight. He didn’t see me losing weight and keeping it off either unless I had gastric bypass surgery. So I talked to a friend who had it done and she told me about all the extra surgeries she’s had to go through. So I talked to another girl and I have to tell you she was SCARY looking. Very dark under her eyes. She’s the one who ultimately made me say this guy is an idiot and not do the surgery. I’ve been telling everyone ever since what he said, too. In my opinion, that guy has no business being a doctor, at all, if that’s his only advice.
My current neurologist also said to lose weight, but he wants me losing 10lbs by next month. That I can do. Well almost have, but it’s not surgery! Much more sound advice.
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