I was going to write about some of the treatment options of fibro on this post, but I will save that for another time. Instead, I would like to touch on the many disappointments associated with fibromyalgia. This is not just from my standpoint, but from the view of family and friends of the many people this horrible condition touches.
On Saturday, April 21st, my husband and I attended a kite festival at a close by park. The photography club we belong to had a ‘scavenger hunt’ …..a list of things both concrete and abstract to photograph and then report back with your pictures later, posting them on the web site! It was beautiful. It was on the warm side, though rain was set to come in later that day, one would never know it by the hot day and Paul’s first sunburn of the season! 😉 The kites were gorgeous…. all these wonderful kites up in the sky. Big, bright, different shapes and designs nestled against the blue sky with fat, fluffy clouds and the green hills in the background. Families with young children were running with kites, attempting the most difficult task for any flyer; getting the kite airborne. As they made these attempts, you could hear the laughter and cheers fill the air and land in you ears like magic little drips of sound, tickling your sense of hearing in the most delightful way. We were there about 2 hours and had such a wonderful time seeing sites, kites and taking pictures!
I am sure everyone with advanced fibro knows where I am going with this. No, I do not care that we had to park in the handicapped parking lots. It helps me retain the little bit of energy reserves I have. However, I did start running out of gas about an hour or so into the festival and found a place to sit and recharge. After about 2 hours in, we had seen all the kites, gotten all the shots we could and Paul was getting pooped (and hungry!), so we decided to go home. We talked all the way home about the wonderful time we had and about how we need to do things like this more (the cost $0)! 🙂 However, I did not know it would totally lay me up for the rest of my weekend. 🙁
I came across a word a while back that a friend of mine invented. “Flareworthy”. Basically this word means an activity or action that you are pretty sure will bring on a ‘fibro-flare’ but is oh so worthy of a flare. The first example that comes to my mind is my Granddaughter. I if / or when I do flare after chasing her around (and I am not saying I do, because if I ever have… I DON’T CARE!), just using this as an example… but if I ever were to…. it would be a BAZILLION PERCENT worthy of any flare…. no matter how big… ANY FLARE… as my time with my precious Granddaughter means the world to me! Now about the kite festival. It really bummed me out and I was feeling downright melancholy after having so much fun and then feeling so beat. I took a HUGE nap on Saturday then started having stomach problems in the late night Saturday/ early morning Sunday. Once again I had to miss church and I hate that…. I am so tired of missing church. 🙁 And I ended up spending most of Sunday tired,’snoozy’ and generally not feeling well. However, as Paul put it, it was so great to have a couple hours of real fun, outside! So the kite festival deemed itself “Flareworthy”. He stated he enjoyed our two hours so much of sun, fun, kites & laughter, it was all worth it.
For me, it is just so frustrating to know that anytime I go anywhere, it is likely I will spend the next two days ‘paying for it’. It is OK! Do not get me wrong! I still want to be invited to parties and barbeques…. to showers and festivities and YES, TELL ME WHAT I CAN BRING! 🙂 It is even more depressing *not* to be included. I love to cook and will make it ahead of time! One always hesitates before posting such things as I want to reach out to others in the same boat but I do not want my family and friends to think any different of me in as far as YES, I still want to bring a dish to the get together and YES, I still want to be invited and YES, I still want you to come over…… OFTEN!
It has really been in the last couple years that my turn for the worst has really gotten bad. I think a lot of it revolves around when I blew a tire doing 50 MPH and my car did a complete 360 degree roll. I was taken to hospital and God was surely watching out for me as I only suffered some bumps, bruises and a nasty gash in my leg…. what I did not count on was Roanoke Memorial Hospital sending me home with a nasty STAPH MRSA infection that would keep me out of work for SEVEN WEEKS! I spent 3-4 hours a day doing warm compresses on my festering leg. I took big blue horse pills (antibiotics, but even when I had to to take CIPRO, I have never ever seen a wicked antibiotic like that). MRSA is not an infection, it is a WAR!
I think the second and final straw that broke the camel’s back was my intestine perforation and my emergency gastrojejunostomy. I had been having stomach problems for months. That is one of the reasons my weight dropped SO low and I now see, I looked pitiful! I now see why my Dr’s, nurse practitioners, family and friends that felt comfortable enough kept on me about GAINING some weight. Huh? Never ever in my life did I think that would be an issue. However it was. It took me seeing a picture of myself at 125 lbs and then after getting a bit of weight back on me to see, WHOA! I looked unwell. 10 years older. My tummy issues kept me from eating a lot of things. Sometimes I would maybe take in 700-800 calories a day. Then came the morning of July 1, 2011. I woke up in the worst pain I can remember. My abdomen was distended and hurt worse than labor during childbirth, worse that when I had a retained gallstone which caused pancreatitis causing me to have to have an emergency ERCP to get the stone out . It was THE WORST pain I had ever been in. Looking back we should have just gone then. However, having played this ‘song and dance’ game with my belly for months and months, I figured it would ‘pass’. Kadence would be having her 1st birthday party the next day…. of all the times of this to happen, it happened the day before my precious ‘Butters’ 1st birthday. I was going to try and tough it out until then. I sent Paul to work. I spent the rest of the day on the couch. I drank a few sips of water. I did not have the TV on. I took a shower and sipped on water and held my middle. That was it. When Paul got home, he ate a bite and off we went to the ER. By the time I got back there and scanned it was 3 AM… BUT, I was in an OR by 5 AM. This is EXACTLY what happened to me. Change the age a bit and the amount of time post RNY and you have a ” ‘zactly”!
It does not say on hers, but for me, I was in ICU for 3 days with an NG tube (forgive my ‘French’ here, but the most miserable son-of-a-bitch ever created in medicine) had that thing for 3 days. I was in the hospital a week though I think he would have kept me longer except I was begging to go home. I was about to check myself out so I think he let me go but I was to see him twice a week for a while. I am starting to have issues again and frankly and frightened. I am keeping a close eye on everything….. so we shall see. I just pray it is the IBS associated with the FBS/CFS and not another problem like this that is the cause.
I feel the car rolling/ MRSA and the emergency surgery for the perforation are the two biggest reasons I have gotten so, oh so bad with my fibro. It was after the MRSA that my health care provider fully disabled me out of work. I already had a lot of stress from various life events and two HIGHLY stressful jobs. When the car accident began its chain of events and then months later my surgery, I feel my body just cold not take it. So Saturday, after spending two hours at a kite festival, that was an example of what my life as been like since things have progressed to “REALLY BAD!”. As I was weeping while Pauls just hugged and held me, I cursed this awful, horrible ‘condition’, I had to give thanks to God for such a wonderful and understanding husbands whose biggest frustration is that he cannot do anything to help (though he really does do a lot and just does not realize). I have the best husband in the world and could not bear this without him.
I intend on doing *something*, I just don’t know what yet. Lets see… I have tried it all. I lost 170 lbs… thank God as I could not imagine having gotten to this level of fibro and not having lost the weight….. I have tried Physical Therapy (usually I end up hurting worse and even in situations where they can put me in a pool, etc, I cannot afford a 20% co pay three times a week). I have tried just about all the meds and cocktails of meds available. I have tried a Chiropractor (helps a bit but insurance only covers 80% and you have to go three times a week). I have tried swimming (and if I want super flare, I will do a few laps in the pool… that will guarantee super flare!). I will stand on my head facing east while the wind blows 10 MPH as a camel farts in outer Mongolia if they think it might help! Okay, that may be a little extreme. However, if it has worked for someone, I just may give it a go! The last couple of years has been, as I stated earlier, soul crushing. For those that say, “It could be worse.” Yes, I am aware and thank God everyday for the blessings He bestows on me. With all due respect, however, until you cannot sleep in bed, lying down for 7-8 hours because it hurts too bad to lay flat all night….. until you walk around like an 80 year old after sitting for a hour or two because your muscles are so locked up…. until your neck is so tensed up, you can see the muscle knotted up under the skin (looks like someone put a small red potato under the skin at the back of my neck….until you sit up 2 and 3 hours in the night because of pain…. well, you get the drift. This is a blog about fibro; not a social network. So, what I am doing is talking about what many others with fibro face. And many…. oh, oh so many understand the disappointments that come with going out to watch kites for a couple hours and being asleep for the afternoon! However, I would not change a thing except to have possibly had my Granddaughter there with me… Mmmm maybe next year we can arrange that, I just love that little girl oh so very much and enjoy spending time with her! I enjoyed our time at the kite festival! In the end, I am glad we got out and did something! So yes! The kite festival…. that 2 hours of fun Paul and I had…. was “Flareworthy”.
Until next time, K.