Ahhhhh Spring!

I haven't been on here lately, I have not felt that good over the last few weeks, I've been struggling big time! I have had a flare of Sjogren's and fibro! The fibro being the worst I believe this time. Well, maybe a little of both. The deep muscle pain and joint pain have been equally bad! I can't seem to get my elbow to stop hurting. I have done all my PT stuff I learned, I have taken my Meloxicam and sometimes my Naproxen too, heck I even tried just plain old aspirin. I don't know what is next but I don't want to go to the Dr. again for something else they can't fix, so I will probably wait until it gets so bad I have no recourse but to go.  I also have been withdrawing from Savella, I know that's what it has been this week because I've been pretty ill most days, my mood has been ok but my system hasn't!  I am starting to feel better. Is it the Spring or that crap out of my system? I don't know but I welcome it! It isn't quite as warm yet as I would like, we live in the south and it seems it used to get warmer quicker, the last few years, not so much! I have been hating the night time too! Oh my word, it's been terrible! I love the nightlife? NOT! hahaha! Every night the pain gets worse, the night sweats come, the hot flashes and one minute I am burning up and the next minute I am cold. I need a heat pad, an ice pack and it's never ending! So here I am joyous that the warmer weather is coming because I feel half way normal! The back even feels better because the arthritis doesn't flare up and cause me to hurt on cue every morning when I wake up! Less pain = less medication! Hallelujah! I can't stand taking all this medication. If I can wean down just one pill a day, I'm happy. I focus better, my mind works so much better. I may not write any better though, so y'all just know that what you see is what you get, lol! Ok, I am feeling really good and I cleaned up my house and am feeling accomplished and praying that I don't have to pay dearly for it and tomorrow and Sunday I will feel just as good.  I miss church, I miss getting up and going anywhere! I always make it to my appointments so maybe I just need to make an appointment with God every Sunday somewhere besides on line! Here's to that goal being met with warmer temps. I am so grateful to my God for my life, I have my problems, but he gives me a new day every time I wake up, to have a better day! I love him! Y'all have a wonderful weekend!  1Thessalonians 5:18 Give thanks in all circumstances; for this is the will of God in Christ Jesus for you. 

OH my achy bones!

Sorry I haven't blogged in a week! I have had some serious elbow issues and I tried not to cause them to flare up any worse than they already were by typing a lot. I've also been running around all week with doctor appointments. Therapy on Tuesday, New Rheumy on Wednesday and Ortho surgeon on Thursday....morning, early! ha! Anyway, I am so excited about my new rheumatologist! She is awesome. I have had less than good rheumies since I moved here. The first one I had he was passive, an oh well kind of guy. He never ran tests on his own, he always said the same old thing every time. How are you and see you next time. When I had the rash on my knuckles, elbows, knees and shins, he wasn't concerned but told me if I was he would send me to a Dermatologist. Well thanks, so I took him up on that offer and thank God I did because she found the Sjogren's. She asked me if my rheumy ever tested me for any of these things and I said no, wonder why he wasn't concerned? She said she wanted to refer me to a great Rheumatologist but me being stubborn and not wanting to change doctors once again, told her I would wait. Well my rheumy never got better and in fact, he wondered what made the dermatologist test me for Sjogren's and I was wondering why he didn't. I should have told him that. Well he left the practice and left me with a P.A. Now I have no problems with a P.A. but I think with a specialist, I want to see the specialist not the P.A. every time. Well the network they are in, I guess they decided not to have a new rheumy and just keep the P.A. My first time seeing her, I asked her what she knew about Sjogren's and she said enough! I thought well that's rude, so from the get go I was turned off by her. I like to have an open and honest relationship with my Drs. I don't like those who think they are better than me because they are doctors. So I made the appointment for this great new rheumy and I am so happy I did. It took me 3 months to get in, but so worth the wait. She came in, asked me all sorts of questions, poked around on me, checked me out, took 7 vials of blood and had them X-ray every joint in my body. Now to me, that says, I am interested in your health and I am going to check everything I can. She said she thought I may need a stronger medication than Plaquenil for my Sjogren's. I looked up some of the stronger meds and they scare me. Plaquenil can take my sight, a rarity, but it happens. So what can be worse than that? DEATH! Oh my goodness one of the strongest warnings about the intravenous treatment is some people have died with the first infusion! What the heck? Why would anyone risk that? The pain must be worse than mine because as bad as mine is, I don't think I can do that. Then there is Methotrexate, a cancer drug. It doesn't have the greatest side effects either. What is one to do? I'm just not going to worry until she says what she has in mind. Then I will have a really heavy decision to make. Then she gave me a very strong sleeping pill which I won't say what but she looked at me and said you're not getting enough rest. I can tell you aren't sleeping well, not in a deep sleep. Man she hit that nail on the head! Wonder if it was my sleepy demeanor or the circles under my eyes?(yes I wore make- up!) Anyway, I haven't tried it yet because it seems scary too. I will save that for when I can tell I am going to need it and can afford to sleep for hours! My ortho Dr. wants to see me in 6 weeks so we can keep an eye on my new symptom of my tailbone now causing me a lot of pain and the phantom sensation of peeing myself. Yeah, new one! Just sitting here one day and that happened, I looked, I felt, I checked in the bathroom and nothing! No pee, no wetness, nothing! I've had that feeling before on my leg like warm water is trickling due to nerve damage but never felt anything like peeing on myself. I know it's arach related because it's nerve related. I really think my body hates me! Anyway, I am trying to keep on keeping on! James 1: 2-4 says, Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.
Love to you all,
Cindy

Do I say I too much?

Today I am resting, taking it easy and just laying around in pjs with a cup of coffee and my computer. I started thinking ( btw that's dangerous ) ha, and I was thinking that I say I too much now. Well it was kind of brought to my attention but it did make me think about it. Although I still love everyone and try to be as caring and supportive as I can, I do see that when someone is having a problem and if I can relate I always bring up my stuff. Why do I and others do that? I am not trying to make my stuff seem worse by no means, honestly I think I am just relating the only way I know how. You can't have a conversation without saying I sometimes. Those of us who do this, maybe we can stop when we start talking or writing and see if it's going to seem that way to the person we are talking to. I am always trying to compare stuff, well you did this but I did that and so that's conversation isn't it? Am I confusing y'all? lol I am confusing myself. I just do not want to ever seem like I am coming off as self absorbed. I think maybe since I have become chronically ill that may be the case more than I realized. I started this blog to talk about my pain and my everyday life dealing with it, but I also wanted interaction with those people who are like me. I was hoping that people would feel comfortable enough with me that they would interact here. Facebook was my place, but people start making you feel like you're a downer when you feel bad and you're ruining their day by talking about it, but with this blog, you know what you're getting into before you read it. I am in a lot of groups dealing with my conditions but even there sometimes people act like they would rather talk about anything other than what's bothering them or what's ailing them. I am trying to get into crocheting and I've been working my jigsaw, trying to do anything but think about the pain! So anyway, when I am in pain, I am going to talk about it. When you are in pain I will be sympathetic and I may say well I hurt this way or that way but remember, I am only trying to relate, not take anything away from you! We are in this together! Romans 12:10 says this....Love one another with brotherly affection. Outdo one another in showing honor. 

Love to you all, 

Cindy

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