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

Just BLAH!

I wasn't going to do a blog today, I feel like crapola! This very cold weather has me in a fibro flare. I won't be writing much as my arms are so heavy and painful. My fibro is mainly in my arms. They get so tired and they feel like someone beat me up or I lifted weights for hours. I am tired, I slept until 11 am today, I haven't done that in a while. I mean I have my fatigue days, but to actually sleep in that doesn't happen on normal days. I am not feeling that overwhelming fatigue today, just a blah sense of why don't I just go lay in bed and watch TV kind of day. My face is broken out, I don't know why that happens unless it menopause symptoms. My hair is thinning out. I was noticing that this past week and I was wondering if any of you with Sjogren's have that happen to you. Is it the autoimmune or the Plaquenil? Having a cavity filled tomorrow. I haven't had a cavity in over 30 years. Thanks Sjogren's and dry mouth. I may or may not blog tomorrow. Depends on how I feel . Anyway, just rambling thoughts today, I have my cousin on my mind. She is very sick and in ICU in another city and I can't get up there right now. It makes me see that my whining is so petty some days! Please if you are a praying person, say a prayer for her recovery. Thanks!
Love to you all,
Cindy

Let's talk about FIBROMYALGIA!

Hey y'all!
I took a day off from the blog yesterday, I felt ok yesterday, nothing much to write about, or nothing that would come to my mind. I was reminded late evening of the brain fog I have from Fibro and of the muscle pain. So today I want to talk about it. First off, I had another long night of tossing and turning from this elbow pain! If any of you have any solutions I would welcome them. I get so tired of getting steroid shots and they don't last. I have also done physical therapy and it didn't work either. Having all over nerve pain from the Fibromyalgia is the pits. Last night, my hubby walked up behind me to give me my shoulder massage and I was quickly reminded that I am in a fibro flare! I have had the nerve pain in the elbow driving me crazy but I've had some deep muscle pain in my arms, and ache like the flu but it's not the flu, it's the Fibromyalgia!  My husband gives me shoulder massages quite often but last night I couldn't take much, as my muscles felt like big giant bruises. I question why in the world do I have to have Fibro, Sjogren's and Adhesive Arach?  I mean all of these things combined can be so exhausting! The pain is unbelievable with all three, especially in a huge flare. There are, ( for me anyway ), different levels of flares. With the Fibromyalgia, my flares consist of fatigue that I can't ignore, muscle pain that when I am touched by anyone, anywhere, it feels like I have a giant bruise. I can't even be lightly tapped on the arm or touch my outer thighs! The knots in my thighs get inflamed and they just ache something terrible! When I first felt those knots, it scared me! I had no idea what they were. My pain Dr. says they are trigger points, but they are actual knots in the muscles or something called lipomas. I have never had a direct answer to that question as to what causes them, except they are trigger points. Maybe they don't really know! I asked one Dr. why they didn't talk to me more about what's going on with the Fibro. I feel like they diagnose you, tell you to take the medicine and throw you out into the world. She told me that it's because they really don't know a whole lot about it yet. I think we as patients, need to read and research all we can to know how to treat ourselves better and advocate for ourselves with Drs. I know more about my Sjogren's and Fibro and AA than my Drs. do because I have read all I can! I don't have all the answers though. I still have the pain. The opiate that I take for my back does not help the joint pain or the muscle pain of Fibromyalgia or Sjogren's, heck it barely helps my back. I take Lyrica too, for the nerve pain in my back and my legs, it helps most of the time. Now about this brain fog! OH MY GOODNESS! Now I tell you, I have a good knowledge of our vocabulary, but when I get into a conversation now, my words fail me! I can't even find the solution to try and explain what I am trying to say, it is embarrassing! Tell me if you do this too, you're in mid sentence, you know what you're going to say but then all of a sudden the next word won't come out, you lost it, and you can't get it back! The name of someone you have known all of your life, won't come to mind or a celebrity that everyone knows, you can't think of their name. You can tell someone what movie they played in or who they married but their name won't come out. This may happen to all people sometimes, but it happens to those of us with Fibro, A LOT! Sometimes I feel like someone who has had a stroke. My Daddy had one and one of his problems is getting out what he wants to say. He knows what he wants to say and can't say it. It is the same thing with Fibro except whatever word it is we want to say is lost until someone else says it for us, that is if we explain what we are trying to say. I will do this with my hubby but most people I just tell them, shoot I lost my train of thought. At least when I am writing, I can use another word with the same meaning and no one ever knows. I use the simplest word I can think of because the big words are the hardest to remember! Ahhhh the joys of Fibromyalgia! Today, I am tired, again because of the tossing and turning last night and probably a little bit of the Fibro fatigue. It's all related, it's all overwhelming and it all just plain out sucks! Sorry but that's the best word I can think of to describe the day to day pain. I honestly do try to keep a good attitude and keep a smile on my face. If I didn't do that, I would be miserable and as much as I deal with daily, I am still happy to be alive, miserable is not how I would describe myself! Isaiah 48:10 says, Behold, I have refined you, but not as silver; I have tried you in the furnace of affliction. The Lord is saying, he tries us and our faith and love for him gains more strength when we are hurting. He refines us so that we may know him better. That's my perspective anyway because it has been my truth. I have sought him more, I have read more, I have prayed more. He has given me this time that I have on my hands now to learn more about him. God bless you all and I pray you all have a no pain, low pain day! 
Love to you all!
Cindy 

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So TIRED!

Having all this pain leaves one tired. When you've tossed and turned all night like I have this weekend it finally hits you and you just can't function. One night last week, it was my elbow and my index finger I have been calling the mouse finger, the right index finger that does all the scrolling. Then last night it was my back. Now you wouldn't think that a finger with arthritis in it or your elbow could hurt so bad they leave you laying there in agony, but they can and they do! So this morning I am sitting here with my sciatica acting up and so sleepy but I fight going to bed! Why do I do that? The only time I've ever given in is when I have no choice, when that fatigue we get with our fibro and Sjogren's hits, it is a MUST to sleep. I will have slept all night, a good night's sleep and the next morning I feel like I've been drugged and have to go back to sleep and I will sleep all day and all night again until the next morning when I wake up and finally feel refreshed. But getting back to why I won't go to bed when I am tired and hurting like this. I fight it I guess so I can be a part of the day. I don't want to miss out and I feel like a completely worthless person some days if all I do is lay around. My husband doesn't understand it. He has no problem with me resting when I need it so why do I? I think it's because people have put a stigma on those of us who are disabled. If they see those of us disabled and in a wheelchair I think they get it more but when those of us with invisible disabilities are not doing anything they wonder why? The cliche that you don't look sick comes to mind because you do hear that all the time when you have an invisible disability. I swear, if you saw me today, you wouldn't say that to me because I look tired, I look exhausted and worn out but if you were going to see me, I would be made up with my make up and hair done and a smile on my face because I don't want you to think I can't handle whatever this is I am fighting. This thing you don't understand! I don't know why I care what others think, I do to a point but sometimes it's ridiculous and I know it and I finally give in and do what is best for me. I have no responsibilities like some people do and know I am blessed to be able to rest when I need to and I should take full advantage of that. Ok, I am rambling but the message is this........Please those of you reading that aren't sick, don't judge those who are just because you can't see their illness. Be a blessing to them in some way. If your loved one is tired then encourage them to rest their bodies. To those of you who are sick like me, don't feel guilty and rest when you need it, lay around, take a bath, do whatever it is that makes you feel better. I think I have talked myself into going to bed and relaxing on my heat pad and closing my eyes and remembering my blessings and try to forget my ills a while! Remember this verse from 3 John chapter 1:2
Beloved, I pray that all may go well with you and that you may be in good health, as it goes well with your soul. 
Love to you all,
Cindy

Happy Valentine's Day

♥♥♥Happy Valentine's Day to my followers! I wish for you a beautiful pain free day! ♥♥♥

I had a very restless night. My arthritis and tendinitis this time. It's always something and most of the time it's at night! I don't know why at night it's always at its worse. One of my Drs. told me that it's because we have done so much during the day and when we stop at night to rest, the nerves wake up! All I know is that it's aggravating to take your medications as usual that knock you out and when you're in pain, they don't knock you out! I am sure most of you know how I feel! That's all I want to rant about today! It's beautiful outside and in pain or not, I am going to enjoy this day of LOVE with my husband. Thank God for giving me a good husband, and a beautiful, crazy life! Remember this.........
1 Corinthians 13:4-7 says......Love is patient and kind; love does not envy or boast; It is not arrogant or rude. It does not insist in its own way; it is not irritable or resentful; it does not rejoice at wrongdoing;but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things. 
    HAVE A WONDERFUL LOVE FILLED DAY!! 


                               CINDY

Exercise and Pain

I can't wrap my head around doing exercise with the pain it causes me. I keep being told it will help me but I can't get past day one! I know my limitations, so the other day when the weather was in the mid 60s I took a walk. I walked around my neighborhood, out to look at the intracoastal waterway and take some pictures. There are no hills or inclines on my walk, just a straight path. I didn't take my cane, wasn't feeling like I needed it so I left it at home. I felt good after my walk, it felt good to get out in the sunshine and breathe the fresh air if only for 30 minutes doing something other than running to Walmart. The Pine trees smelled so wonderful. The sky was so blue. Everything was peaceful on the waterway. The golfers were out in full force around the course. I felt pretty good about my walk. I was pretty pleased with myself.  By the time bedtime rolled around, my hips were so painful, walking was the last thing I wanted to do. My back hurt, my hips hurt and my knee hurt! So much for wanting to take another walk anytime soon!  I have been told to do water aerobics. Well here's the thing, I tried that out this past summer and while doing those said aerobics my knee went out. Don't know if it was about to anyway but something about how I moved it that day caused it to swell and started the knee journey, the icing, the cane, the PT the injections, the removing of the fluid. Swimming doesn't seem to bother me. We have our neighborhood pool. It doesn't open until late Spring. I can swim all summer for free. It costs money to swim somewhere else in the wintertime, money I just don't have. I mean I can't pay $40 a month just to go swim 3 or 4 times a week. So here I sit thinking about trying some yoga. I think about it, I've watched some videos on youtube on restorative yoga. Some of those moves I think I can do and probably will feel better, stretching those muscles in my back help a lot. But some of those moves I will have to skip. Sitting cross legged on the floor isn't something I've been able to do since my 30s. I am going to try though. I have to try. If I don't and it really could have helped me I will have missed out. I will try and try and try from now on to do something, anything to make me healthy. I can't run a marathon but maybe I can ride my bicycle again soon around the neighborhood, this Spring, I will try. I can't go to the gym and lift weights or walk 10 miles on the treadmill or do that spinning, whatever that is, but I can try Yoga, or Tai chi or Pilates even. I will try until I find my fit. Sitting around isn't healthy. I have taken this last year trying to fight what was given to me, these diagnoses.  With fibro, the muscles hurt, the back hurts with the arach and every joint I have hurts with the Sjogren's and arthritis . Some type of exercise has to fit me and I am tired of giving in to all of this stuff. I have learned I can't be superwoman like I want to be with these conditions but I am also learning I don't have to lay around all day and pout about them either! One thing at a time, one day at a time. That is my motto now, and I am going to have to get used to it!
Love to you all,
Cindy

Sjogren's Syndrome

I want to talk about this Sjogren's Syndrome I was diagnosed with last year. It came about a month after the Arachnoiditis diagnosis and sometimes I wonder if it didn't bring it out. Sometimes you can have an autoimmune disease stay dormant in your body for years, stress and other factors can bring it out. ( My therapist told me that when I told her my thought on it.)  Since Arachnoiditis is the trauma to the spinal cord nerves and can cause so many different things to go wrong in your body, seems to me it could be what caused this to come breaking out! I won't get into all the medical mumble jumble of Sjogren's because to tell you the truth, it's all about antibodies and positive blood tests and lip biopsies and so on. What I can tell you  is this, it causes dry mouth, dry eyes and other dry places and it causes some more extreme joint pain, fatigue and other weird stuff. I am 44 X more likely to get lymphoma. Will I get it? I don't know, but it's scary all the same. I do not dwell on it but the first time my glands swelled up in my neck and my ears and throat were sore, it's the first thing I thought of, I had never had it happen before. It is strange how all this new stuff just starts coming up out of the blue. The rashes too, they are what helped get me diagnosed, but they are strange because they do not hurt or itch. The only one that did itch was on my shins and it drove me crazy but we finally got it under control. The sun which I love is probably the culprit. Retire at the beach and now I am supposed to stay out of the sun, ironic isn't it?  Sjogren's is considered a Connective Tissue Disease so that is why I believe I have all the ITIS brothers living in my body. If it's a muscle, tendon, ligament or cartilage then this disease will cause a problem with them. I have a problem in every joint in my body and the little problems I had have now all of a sudden gotten worse. The inflammation in my body is worse. It really sucks to go to the Dr. when your foot hurts and be told you have Plantar Fasciitis, then the next time you go it's because you have tennis elbow, arthritic knee, bursitis in hips and legs, tendinitis in your ankles and the list goes on and on.....when does it stop!?  Now all of this stuff you can get under control most of the time. I did a LOT of physical therapy to get that Plantar's under control . I did a lot to get my knee working again so I could put down the cane but it never got better until I got an injection of Synvisc and the next step is having it cleaned out. I am putting that off until I just can't help it anymore. I am tired of being cut on. Through the years I have had so many back surgeries, gall bladder, bursa removal in my foot, screw put between my toes to keep them from growing crooked, hysterectomy because scar tissue was growing on my uterus from back surgeries and the spinal cord implant. All of the stuff that I have been through, some people have called me a hypochondriac, well I have news for them, I am not one and I never have been and it really ticks me off when people say that. You're just too young for all of that. Well yeah I was and am, but it's my life and I have never went to the Dr. where there wasn't a real diagnosis for what I was going through. I at least now know why I have had so many joint, and other tissue problems like tendinitis and burstis so long. Do I sometimes make a drama out of how I feel? Probably, I mean let's face it, I get tired of hurting somewhere. I do however relish the days where it's minimal and make the most of them. I am probably more grateful for a beautiful, pain free day than most people who don't have pain are, ever! With this Sjogren's, I have a little of the dry mouth, my eyes are dry sometimes but not really bad. My battle with this is the joint pain and all the itis brothers and fatigue. I keep a bottle of spray for my mouth by the bed because nighttime brings me the worst dry mouth. I keep my eye drops in my purse, beside my bed. I have my lozenges for dry mouth in my purse. I have to use a special toothpaste at night with A LOT of fluoride to help keep my teeth from decaying due to dry mouth. I don't want to lose my teeth, that scares me too! I have to take a medication called Plaquenil for the Sjogren's. It helps slow down the rashes and keeps the joint pain minimal. I think it's supposed to slow the progression. It is a drug made for malaria, how it came to be used in Sjogren's care, I don't know. The worst side effect is it can cause you to lose your sight. It's rare, but it can and you have to have eye exams by an Ophthalmologist every 6 months. I have come to terms with all of this. I do have moments of weakness and dwell on them when I am feeling bad, I do not however dwell on them day to day! I would be so depressed and probably never get out of bed. So I think I have pretty much explained why you might hear me whine some days and or cry. Let me tell you, don't ever think for one minute, any of you reading this who have the same thing, that crying is weak, or giving up. Sometimes, we have to let it out! This is why I started this blog. It is for my therapy but it's also for all of you Sjoggie's out there and any of you with arachnoiditis or other pain related illness. Don't give up, know there are so many like you and who understand you out there! I am only one!
I want to say that I do want a dialogue with you here. If you care to have one. Please, leave a comment below! If you don't have a google account, leave one anonymously or give your name in your comment then post anonymous if you want me to know who you are! Thanks for reading and I want to end this by saying that I give all the glory to God for allowing me to be able to share my thoughts, to be able to get out of bed today and walk, and clean, and do normal things! I can do all things through Christ who strengthens me! Philippians 4:13.
Love to you all,
Cindy

Quick Note

Blahhhhh
I have just felt blah today! It has rained and I had errands to run. So tired tonight so I don't feel like blogging but will be back tomorrow! I have some stuff to talk about, Sjogren's being one of them. See y'all tomorrow!
Love to you all,
Cindy

Let's wrap this up

I spent a few days describing my back problems and I want to add to that before I begin on the Sjogren's journey tomorrow. Let's get to the wrap up about the arachnoiditis. With Adhesive Arachnoiditis, it can cause so many symptoms in you that mimic other diseases and autoimmune problems. Right now, I have muscle jerks and spasms that are insane! If I am at rest they start, jumping here and there and once, ( you can laugh, it's ok, I did, ) once, I smacked myself in the face! My arm just came up and plopped my hand right down on my face, I guess I needed it? I don't know, lol! Anyway, it causes that and I take a muscle relaxer at night so I can sleep. I am now on my third one, they all stop working at some point. Praying the new one doesn't. It causes muscle weakness and that's myositis. My muscles are weak in my hips because my back is weak. Getting up and down is hard sometimes, not always, but there are days. It mimics autoimmune disease to the point that sometimes I don't know if it's the arach or my Sjogren's or something else! My worst fear with Adhesive Arachnoiditis is getting up one morning and my legs won't work anymore.Being paralyzed, having to live in a wheelchair, have someone clothe me and bathe me, I don't want to even imagine it! That's the big possibility with this crap, that and not being able to control my bladder or bowels. That's called Cauda Equina and Adhesive Arachnoiditis can cause it to happen.  Right now, I don't have those problems and I am going to thank God every day that I don't. I may never get to that either. It's just a huge possibility and you can't help but worry about it, but after the initial worry, I turned that over to God too because I have no control over whether it happens or not. So why dwell on it? Woke up at 4 this morning in so much pain, I just started doing leg lifts and stretches right then and there to ease the pain. I needed to get up and take something but sometimes I am hard headed and I forgo the pills and opt for other options, especially when I don't want to get up. Living with chronic pain is a battle. Sometimes you win and sometimes you lose but it's never ending and there's the problem. It is in your head all of the time, it consumes you and sometimes it eats you alive! You drive yourself and others crazy talking about it all the time. It becomes your life trying to figure out how to fight it and still live a half way decent life. I didn't know how any good would come from this, but as I have fought on, I have found a whole world out there with people just like me. I am NOT alone! We want to laugh and have fun with our kids and our grand kids and our friends and go to concerts and water parks and amusement parks, but some of that just isn't possible anymore, so we take what we can get. For me, just spending quality time with my grand kids and just talking and watching them play is good enough. And most of them are now old enough to understand that I can't do a lot, but we still have a blast with each other. Instead of making it about a place we can go, I make it about time, spending my time with them, getting to know them. We make videos and talk about silly things and laugh a lot! So living with this chronic pain and illness is teaching me lessons that maybe I wouldn't have otherwise learned. Time.........time well spent talking and learning and getting to know those we love, is so very important and shouldn't be wasted! Not ONE second of it!
Please leave a comment at the end if you desire. If you don't have a google account and just want to comment anonymously you can do that. If you want me to know who you are but don't want an account just sign your name in your comment and then publish anonymous. Click where it says No Comments. Talk to you all tomorrow! Tomorrow I will talk about that wonderful Sjogren's. My goal is to let you all understand what I have and how it affects me before I talk about my every day junk.
Love to you all,
Cindy

Romans 5:3 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance

My title today is a bible verse that was put on my heart by some dear friends who have paid attention to me when I was hurting and posting it all over FB. They found a little picture with that verse and thought to give it to me. That made my day. Knowing someone was really listening, not judging but listening and seeing that I was truly hurting, in a bad place and needed comfort. I have never met them, they are FB friends but I tell you, they really are a blessing!
We don't think that there is any way that we can get through these painful days, but if we know there's a reason for the suffering then we will continue to endure it and we will learn we are strong enough to handle it. I don't believe in any way that I am being punished for anything. I believe my suffering with this pain is making me stronger, strong enough to share my thoughts and feelings with others who are hurting. I am not a writer, but I do have the gift of gab, so maybe, just maybe God is using that gift in me to bring strength to others. Do I always have a great attitude? NO! Sometimes I lay in bed and wallow in pity! Poor me, why me? Well why not me? I'm not better than anyone, and there are my dear, a lot more people out there who are worse off than you so get up and stop feeling sorry for yourself. Get up and enjoy life any way you can! That's my dialogue to myself just about every single morning! When I wake up, first thing I say to myself is what is hurting? Of course I know the back is, but is the knee?  Are the thighs, fingers, elbows or feet?  I adjust my day accordingly after I take my meds, sit down at the computer, have a couple cups of coffee and let the meds kick in so I can be productive in some way! I am grateful to God that I do not suffer depression. I have before, and I get down, because lets face it, pain sucks! It's hard to deal with 24/7 but I have to live, so if I feel myself getting more down about my situation than I should, I do what my Dr. recommended I do and that's seek therapy. It helps so much to talk about it with someone who can give me the coping tools I need. I recommend it to any of you who have chronic pain that disrupts your daily life. It's nothing to be ashamed of. We all need a little help now and then coping with anything this old world throws at us! I don't want to talk about how I am hurting today. Today is a happy day. I am going to dinner with friends tonight to celebrate my birthday ( it's tomorrow ) and eat that beautiful cake I made for myself last night, from scratch, and so yummy! I pray you all have a beautiful day! Please, leave comments at the bottom of the page to let me know you've been here. You don't have to have a google account, you can just post anonymous. I thank each and every one of you for dropping by and please, if you feel your family or friends would like to read this blog, share it with them! God bless!
Love to you all,
Cindy

Part 2 of Oh My Aching Back

Well here I am back to talk about how all this started.  Long day so this is going up kind of late. I will write more tomorrow when I have much more time!  I ended the conversation yesterday talking about my second back surgery, so let me finish that.

After that 2nd surgery and 1st fusion, I thought I would be done. Well I had to do physical therapy first because I couldn't move my toes. After getting my toes to work again I was relieved because it really was hard to walk right with them numb and at 40 I was walking around with a cane, and I hated it! I felt so old! I went for SS disability because I couldn't work anymore, I could barely do housework, and I made myself do that! I HAD kind of an OCD attitude towards my house, but this past year, I have had to let that go! I still clean but it's one chore a day and my hubby helps me so much with the hard stuff like vacuuming the floors. So after 7 years of no problems with the back except when the cold weather hit or I over did it, the back  went out again! I was trying to start work again by working part time at a call center. I thought if I could get back to working I could get off of disability. I loved working. 2011, my back had different plans for me! I had got to where after sitting for the 4 hours at work, I wouldn't be able to do anything once I got home. My back would kill me so I finally went to another surgeon. I had my other surgeries in SC, I didn't know these doctors in KS. I wish now I had never met them. Dr. W. as I'll call him was kind of laid back, almost too laid back but even though he did say there were risks with another fusion, that was what would fix me again. Now mind you every fusion you get, your spine gets weaker with the other discs and it becomes a chain of degeneration that just won't stop it seems like. Anyway, in surgery he took out my old hardware so he could get to the levels to fuse, this time 3 & 4 and 4 & 5. When I woke up from the surgery I was in so much pain! It was like I was on fire and my legs were burning! I begged them to figure out what was wrong but they said that would wear off because the nerves had been messed with and they would calm down. Well 3 days later they still hadn't calmed down, thank GOD for the morphine pump I had my finger on and pushed every time I was allowed. They came in on the 3rd day and said they would send me home the next day and I yelled at them that they WOULD NOT send me home until they figured out why my legs were burning. So they finally agreed to do a 3 D X-ray on me to see if they could find anything and sure enough, they came in and told me they saw 2 screws on a nerve or 1 screw on 2 nerves, to be honest I can't remember which it was now, all I know is I had to go back into surgery and let them adjust the screws.....well too late, the damage was done. The burning did calm down but it did not go away in my left leg as well as it should have so then I was left with pain in my leg, so put me on another medication and send me home. My back has never stopped hurting since! They really messed me up! In 2013, I couldn't take it anymore and I had a spinal cord stimulator implanted to help with my pain and help me get off all the meds. It worked so well! For 6 months it helped me get off my pain pills, my Cymbalta and at least be able to walk around my neighborhood. When 2014 started, I thought I could try working out a little at Curves again. I asked permission and got it from my Dr.  He didn't know how Curves worked so after I started, about a month later, I was in dire pain again and this was the worst yet pain wise. I had to stop working out and have a CAT scan because after the implant there are no more MRIs. He sent me to the ortho surgeon who wanted a myelogram which is like a CAT scan with contrast. When I went back to get the results he was straight up and said, good news and bad news. The good news is you don't need surgery, the bad news is you have Adhesive Arachnoiditis and there is no cure. There is no surgery, there's nothing we can do for it. You will need to see about pain management and therapy to deal with the pain and PT might help. So I left devastated. Arachnoiditis, Adhesive which is the final stage of it is what I have. The nerves in your spinal cord get all clumped together and stick together like spaghetti and best as I can tell, it causes so many symptoms and so much pain and so much havoc on your body, I don't know how I will live for maybe another 30 years or more with it. I just don't know. I have a lot of fear for my future but I do have my faith in Christ, so that is my strongest suit right now! FAITH, don't know what I would do without it. I will write some more tomorrow about arachnoiditis and what can happen with it. One month after getting the diagnosis, I got diagnosed with Sjogren's Syndrome which is an autoimmune disease. It's a connective tissue disease that depletes your moisture glands and gives you dry eyes, dry mouth and so much joint pain and rashes and can cause me to get Lymphoma, in fact I have a 44X more chance of getting it now that I have Sjogren's. Wonderful, just wonderful! I will let off some more steam tomorrow! I have had a long day, now I'm trying to finish my birthday cake to take to my birthday dinner tomorrow night. 51 is coming on Sunday. I will be on the first year of the second half of my life, or less. It's in God's hands right? Let's meet here tomorrow! Thanks for reading!
Love to you all,
Cindy

Oh My Aching Back!

My life with chronic pain started at 40 years of age. 11 years ago, 11 years of pain that just gets worse and worse, which is why I decided to write this blog. I NEED an OUTLET! I am a talker, always have been. I also always worked with the public, so becoming disabled really caused me a lot of depression. I missed communicating with others on a daily basis. Thank God Facebook was invented! It has helped me stay in touch with the outside world where I wouldn't normally be able to as much as I would like. But anyway, let me get to the story..... I became permanently disabled after a fusion surgery at 40. My back problems started very young as did my arthritis problems, everything else has come in the last couple of years, but I'll talk about the back first. I had my first back surgery at 28 years of age. Got up one morning and fell in the floor. My legs didn't work. Then I went through all the pain and agony waiting for surgery. I had a ruptured disc so they went in and removed most of it. They couldn't remove it all because it was close to a main artery and he said he risked cutting it by removing the entire disc and that would mean death. I was so scared! I had two little girls who needed me and all I could think was "who is going to take care of them if I am paralyzed or something from this surgery?" I can honestly say, this was my first experience where I went to God in prayer and I know he listened and helped me be okay, because the night before surgery, I asked him to help me to trust him and the doctors and let me know everything would be okay. After saying that prayer, I went fast to sleep, no laying awake all night worried. The next morning, everything went smoothly, the IV went in without pain, I wasn't nervous at all and I know all of this was God's hand, taking all that fear and anxiety away! Well I went into surgery and the Dr. removed what he could & I woke up in NO pain!  I got up after surgery and bounced out of bed and down the stairs to go smoke, ( I don't smoke now.) Anyway, my surgeon was impressed and sent me home the next day because I was doing so well. Skip ahead 12 years when I turned 40. After being mostly pain free for most of the 12 years after my first surgery, I was not ready for my next round with my back. I was working in the kitchen and I was just turning around in the middle of the floor and I went down, once again my legs wouldn't work. The pain I felt was so excruciating! That pain is a pain you don't want ever again. It's scary, to the point that getting it again is still one of my biggest fears. I must have been screaming bloody murder because my now 14 year old granddaughter still remembers that day so vividly! She reminds me of it every now and then, "Grandma, do you remember when you fell in the kitchen floor and yelled, my back, my back?" "Yeah, Brianna, I sure do!" So, my husband at the time was called home from work and he called an ambulance while he and my daughter got me up and in the bed. When the ambulance arrived they had to lift me off the bed as I still couldn't walk. They took me to the ER and I was given injections for pain that finally allowed me to feel good enough to walk. Both times, when I was 28 and at 40, the waiting for surgery was so bad. I couldn't sit on a kitchen chair long to eat, the edge of the chair hurt my legs. I would sit in a tub and couldn't lay my legs down in the water. The pain pills, they barely touched the pain. The diagnosis was worse this time, they would have to do a fusion at L5-S1, if I remember correctly. And he wanted to know why the other disc wasn't removed completely, I told him the other surgeon was worried about hitting that artery. He said he could do that now, no problem so they would remove that, and some scar tissue off of a nerve that was causing me pain and do the fusion. He told me, afterwards I could be better, the same or worse. Well, I got a little of the better and worse. Trying to remove the scar tissue left me with a lot of nerve damage in my left leg, which left me with pins and needles pain, numbness and a big toe that had a tic, yes a tic, whenever it felt like it, it would start tic, tic, tic and drive me nuts! The fusion left me with some pain mostly when the weather changed, the cold, damp weather, instant pain and I told the Dr. it was like I could feel the metal in my back which he thought was just impossible, I beg to differ! I wasn't able to do the things that I used to do and at the time, I worked in a retail store and had a lot of standing, lifting and moving things to do. The limitations put on me, like not picking up anything heavier than 10 lbs, really made it hard on me. I didn't hurt continuously anymore, but I wasn't able to do anything like I used to that's why they gave me my disability. OK! I think I have written enough for today. My back isn't feeling too good now, so I am going to stop the story until tomorrow, or maybe later if I decide I can sit a little longer in this chair! Thanks for reading and I will get back to it as soon as I can!
Love to all,
Cindy

By George, I Think She's Got It!

OK!!! I am pretty sure I have the gist of how to write the blog now. I don't have all the ins and outs of making it pleasing to the eye by adding stuff yet but I will figure it out as I go. I did pick the color purple as my background to signify my pain from Fibro and Sjogren's whose ribbons are purple. Today, I had an appointment to go to and it entailed me driving for about half an hour one way. Then I sat for 2 more hours in a chair and went to Wally World for a few groceries and back home. Got home and couldn't wait to get my heating pad on and take my afternoon meds! I've had my spinal cord stim on all day! Probably going to have to charge the battery up again before long, I just did it Sunday night! I think something new is going on with my back. Anyway, that's all for tonight. I am tired and it is IDOL night so I am going to have dinner, relax and get back to this tomorrow. I will properly introduce myself and tell you all how I came to live with chronic pain! The Pictures below are what started my Sjogren's journey, the joint pain was unbelievable! Came out of the blue! I won't be posting a lot of nasty pictures, btw, I am just trying to figure everything out! Thought these would be good to start!  Thanks for following!
Love to all,
Cindy

Wow, this is overwhelming to me right now. I went straight to the blogspot and set this up and it took me a while to figure out how to get it started. I think I may have it. All of you who are going to follow me, I thank you for your patience as I get set up. I won't have anything fancy right away. I have to figure all this out. I hope to get up and running by the end of tomorrow. Check back soon!
Love to you all!
Cindy