It's a Sunshiny Day!

Well, our weekly tease of Spring is here today! Man I love Spring! The temperatures are usually perfect for me and my conditions. I don't hurt as much in my joints and my fibro doesn't act up as bad. I don't know what the temps have to do with it. I remember growing up and hearing the elders talk about their bones and their rheumatism and bursitis and complain when it was raining and/or cold. I always thought them funny, but not anymore! I don't need the weatherman to tell me when it's going to rain either. I start flaring up immediately! Today, I am in pain, although the sun is shining and it's supposed to be close to 70. I over did it yesterday, again! It's a given, I knew I would pay today but someone has to do the work around here. My husband helps me a lot and thank God he does or I would definitely be in trouble. Well, not trouble but in a MESS! I enjoyed having it done when I was finished though...I always feel so accomplished! We had friends over for a wonderful dinner of fattoush salads and bread and olive oil and hummus. Such yummy goodness! We then watched a movie, Birdman. What a weird movie, ha! It won a lot of awards but for the life of me, I can't figure out why, anyway.......by the time everyone left last night I was wiped out! Of course I ate too much bread at supper and too much candy watching the movie. They say that stuff is bad for inflammation. How is one supposed to enjoy life at all? No bread, no sugar, no cheese, just shoot me now! hahahaha! I mean I have given up turning cartwheels for God's sake, now I am supposed to give up my favorite foods too? Bread, any kind will do and sugar, any of it will do and cheese, lordy I love cheese and ice cream? UGH! In all seriousness I have cut down on all of that. I still don't see any difference but maybe that's just me. I will see a difference when the weather warms up, it won't help my back much but it sure will help these joints! So here's to waking up to sunshine and 70 degree weather from here on out.......one can dream! Ecclesiastes 3:1 To everything there is a season, and a time to every purpose under the heaven.
Love to you all,
Cindy

Out of the Abyss!

WOW! 2 days ago I was in so much pain all I did was whine! I mean, shoot, I was hurting! Today, we had errands to run and I actually felt great for a change. I took it easy yesterday so maybe that's why. I do still find it just flat out crazy that I can be in so much pain and so much despair one day and the next I feel better. I wish I could get a grip on it, but my Dr. either won't or can't help me like I need. Man, it just doesn't seem fair. I read a meme today that said "It's just a constant battle: me against my body; my passions and my dreams and what I want to do with my life, against what I'm physically able to do."  Austin Carlile, Of Mice and Men.  It fits me so well and I know millions of others who are fighting this battle against chronic pain! I have so much that I thought I would be doing with my life with my husband in his retirement. Traveling, getting the grand babies, having people over often for dinner and grilling and on and on and on, but I don't have it in me to do all of these things as often as I had planned. I'm not getting to travel much, riding, driving and all of the hustle and bustle of taking a trip is just too much on me. Getting the grands once a year for a week is ok, it's easy to get the older ones to the beach and just sit and relax while they play. But when they go home, I crash! Going to my hometown to see the babies and my parents and my kids is a hard trip and it's only 4 hours away. I make myself do it! I have to or I don't know when I would see them. I miss walking the neighborhood, riding my bike, working. My life and my body have taken a detour from what I think is half way normal! So I went and ran errands today because I felt so good and I have to clean house tomorrow and am praying I am up to it.  We have friends coming to watch a movie with us tomorrow eve, so I will make myself do what I have to!  I will make myself entertain and if I have to crash the rest of the week then so be it. Shoot, I have to have a life of some kind, even if I have to paste on a smile to get through it, fake it or whatever, I have to have one, one that seems normal sometimes, ( whatever that is ) I just have to! Wouldn't be worth living if I couldn't. Anyway, not feeling sorry for myself today, no pity parties, but stay tuned, there will be one soon I have no doubt! James 1:12 says this..Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him. Y'all take care of yourselves and have a low pain evening!
Love to you all!
Cindy

ABYSS OF DESPAIR

Sometimes I feel like I am slipping into an abyss....a huge, black hole that I can't get out of called despair.  I usually can keep a happy, upbeat attitude about my conditions, and sometimes, I just get so depressed about them. I used to be able to do regular stuff and not have to think about it and now I have to think about every little movement I make and knowing if I make the wrong move, I am going to be in pain......in my back, my elbows, my knees, my foot. Every single time my knee goes out, my husband will say, well I saw you turn your leg this way or that way and you have to be careful, in other words, walk like Frankenstein! Who does that? I have to watch how I bend, how I get up out of the bed, how I hold the blow dryer and brush while doing my hair, my toothbrush even! My elbows are so messed up. I don't know if getting more shots is worth it, they just hurt really bad and then they don't last long so what's the point? On the positive side, how about they will give me some pain free time. Pros and Cons, all of the time! If I go out, I will have a good time but I won't be able to move tomorrow, but if I stay in, I am just becoming a recluse and I don't want that either. I will half kill myself to be with my grand kids and if I can help it at all, they will never know how much pain I am really in! My family looks at me and thinks I'm ok because when they do get to see me, I act fine. I am not fine, I haven't been for a long time and they don't know just how scared I am of not being fine for the rest of my life. I love life, I love living at the coast, having peace and quiet and being able to relax if I need to with no worries or responsibilities but on the other hand, I miss working, I miss dancing, I miss cleaning my house! YES! I said I miss cleaning my house. Oh, I clean it now, just at a slower pace and not as often. It used to be one day a week and I got everything done so I could enjoy the rest of the week without worry. Now, it might be a week, ten days.....when I feel like it and I guess that I never really was OCD or I would still be doing it the same way, guess I just loved cleaning my house. Little things, you miss them or you dread them. I love to cook, but I swear, when I have to stand on my kitchen floor and go back and forth from stove to sink and fridge and cleaning up afterward, I don't love it so much anymore! How ridiculous that I can't even do that without worry? If you are reading this and you are healthy, please thank God for that! I do thank him for my health that is good at this point in my life because a lot of people are dying and are sick and have cancer and I sit here with just a broken down body that is always in pain. It's mind numbing and it messes with you so bad. Some people say I think about it too much, well yeah, it's kind of hard not to when there is nothing else going on. Feeling sorry for myself today I guess, one big ol pity party for this Saturday afternoon. All I wanted was to be able to do a little dusting, work on my puzzle and have a quiet day, my back has other plans. I did do a little work on my jigsaw, but that's about it for me today. Y'all have a wonderful weekend! See you on Monday!  James 5:13 - Is any among you afflicted? let him pray. Is any merry? let him sing psalms.......
Love to you all,
Cindy

FRUSTRATED!

I am thoroughly frustrated with my doctors. My pain Dr., my general practitioner, they have no idea about how to treat me for Adhesive Arachnoiditis. I think when I am in their office and trying to explain it, it's in one ear and out the other. I was trying to explain to my pain Dr. how my flares were when I had them. My back hurts more in the thoracic spine and the muscle spasms are all over my back. It's like it tightens up and is in a giant cramp! He told me that Arachnoiditis only affects the lower spine, not the thoracic. WHAT? HUH? WHAT? I knew right then that he only knew part of the story and that's why I am still dealing with all this pain! I think too that he is concerned I blame him for the epidurals he gave me causing it. I don't think he did, I think I have had it a long time. I have had so many traumas to my spine. I told him I wasn't concerned with who or what, just help my pain!
So I took matters into my own hands today. I sent a link http://www.practicalpainmanagement.com/…/adhesive-arachnoid to My pain Dr. and my general practitioner and told them I was desperate for someone on my care team to understand what I am dealing with. I told them that I am not trying to be condescending, I just really want them to know what I am dealing with so they can help me better and I begged them to please research it! Did I go too far? Shouldn't I be my own advocate? All of the articles we read tell us to advocate for ourselves when we don't feel we are being heard! It is so hard to do with a pain Dr. though. Everyone is so uptight about drug addicts looking for drugs anymore that those of us with real pain issues suffer! Nobody wants to give out the strong stuff that's needed because of possible addiction. Well I tell you what, you live in my body for just one day during a flare and tell me that some muscle relaxer is too strong for me, that it's meant for those with MS or something! I am in no way ever going to say that any disease is worse than the other but I get so dang tired of being cast aside because I have a rare disease that no one understands!  Adhesive Arachnoiditis is on the list of rare diseases! I don't want to be messed up out of my head, I have a life I want to live, but when I tell you that my flare ups are cruel and make me question living for the next 30 years with this, then you need to listen! I hurt so bad, I used to cry, now I don't, it doesn't make it feel any better. It doesn't even make me feel any better. I just grit my teeth and get through it as best I can. Romans 8:18 I consider that our present sufferings are not worth comparing with the glory that will be revealed to us.
Love to you all, 
Cindy

SLEEP! SLEEP! WHERE ART THOU?

I finally got out of bed at 5:45 am since my body decided it was going to do the jerks all night and my back and hips wanted to just throb! Now I take a multitude of medications before bed.....Oxycodone, Lyrica, Savella and Zanaflex. On normal nights I knock out and stay knocked out, but the last two nights haven't been normal. I would have thought that on Monday night, I would have slept all night seeing as how I had a long drive that day to get home and my husband and I went out to dinner and grocery shopping. No such luck, so last night I just knew I was going out and staying out! My body had other plans, again! I have a Dr.'s appt. today and a therapist appt. I hope I can get through them without conking out in their offices. HA! Not that I wish any more pain on myself but I would love to be in a flare just one time while in my pain Dr.'s office! I don't know how to get what I need and I don't know what I need! I think I need a neurologist to figure out if this Adhesive Arachnoiditis is what's causing my spasms at night and the jerking like Elaine on Seinfeld when she tries to dance! HA!!
My body is breaking down, my health is good but my body isn't. My heart and lungs and other organs all working great. No diabetes, cholesterol just slightly above where they would have it, so I really shouldn't complain right? But I do because it eats at me and eats at me that I am only 51 and to me these should be my enjoyable years, instead,  I have to lay around in pain, night after night and I start having the worst thoughts. All the negative things come creeping out.....I start getting anxiety and I start itching all over. I am so scared that I am going to wind up in a wheelchair. I am sure I have said all of this already, but I am scared that I have something worse than what I have been diagnosed with and they are just missing it. Maybe I don't, but when I lay in bed with my body acting crazy, it's all I can think about. Do I have a neurological problem besides the spinal cord trauma? It seems that every time I have an episode, it gets worse. I know my body and boy do I keep a close eye on it. All these muscle problems scare me more than the pain. I hope that there is nothing else and everyone who has AA would probably say, that's all part of it. I just wish I could put my logical cap on when I am in a flare but that sucker is hiding under the bed or somewhere! I may be able to get a nap before I have to go to the Dr. I am absolutely dumbfounded as to how I can sleep during the day but the night brings me so much pain and suffering! Simply dumbfounded!
 Negativity, worry and anxiety, things I shouldn't have as a Christian and I know it! Pain is evil and it doesn't care that you are supposed to turn it over to God, it just wraps around your brain and squeezes all the good you have in you out for that little while you're in the flare! I am working on that part with my therapist. She is a Christian counselor and that helps me a lot! Y'all have a great day and remember this.....Matthew 6:27 Who Of you by worrying can add a single hour to his life?
Love to you all,
Cindy

BRRRR!!!

I got home from my hometown just in time! The winter weather has hit the hometown and my home now. Ice and freezing temps make for a miserable Cindy! I know y'all can relate! Had some bad problems with my back while visiting. It is a 4 hour drive and then non stop the whole weekend. When I hit the bed it was up and down with the back. I drove home yesterday with my left leg in a constant cramp. When I finally got to bed last night, I conked out fast, but within 2 hours, my back and hips were screaming at me! Now I couldn't take any meds because I had just taken everything I could before I went to bed. My pain, it is sometimes unstoppable. Feel like I should have a morphine pump by my bed for the nighttime pain. I don't know what the answer is, and my Dr. sure doesn't act like he wants to help me out with that breakthrough pain with anything but Aleve. Aleve! Have I already complained about that? Let me say it again, ALEVE! It does help my joint pain some, but it doesn't help my back. I did get up and take an extra Naproxen of 500 mg and my pain calmed down. I went back to sleep and 2 hours later I was awake again. I stayed awake from 5 am until 7:30, finally fell back asleep and slept until 9. I am so over this weather because I know it's a contributing factor and it's just been the worst winter for me yet. This constant pain, that bites at me and nips at me and finally takes a chunk out of me is wearing me down. I need sun and warm weather. Since we have moved to the coast, they've had a couple of harsh winters that aren't normal for them. I guess as my husband says, we didn't move far enough south. When you have the fibro, and the arthritis and Sjogren's and Adhesive arach all working as one on your body, it's hard to bear. But I do it and I am able to see just how strong I really am! I pray a lot and give this over to God because I could never do it without him! I feel sort of silly for complaining when others are so sick, they are terminally ill and I just have pain. I just lost my cousin to complications from Diabetes at the ripe old age of 56, 56! She had so much more to do on this earth but God had other plans. Hug someone you love today and let them know you love them. If they are healthy, in pain or terminal, hug them gently if you have to but hug them! Have a great day everyone and thank you for coming by! I pray you all are warm and comfy and have a beautiful day!  James 1:2-4 says this..... Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.
Love to you all! 
Cindy

I have had a death in my family and have been out of town. My blog will resume next Tuesday. Thank you!
Love to you all!
Cindy