HAS IT BEEN THREE YEARS? 

Wow!! It's been about 3 or 4 years since I have written a thing on this blog. I suppose since my pain has somewhat been stagnant I could just let this blog go. But I don't want to. I am not a writer per se but I do like to talk sometimes about what's going on with my health. I have felt so much better the last couple of years. Not that I don't have pain, I do, but I don't have frequent flare ups like I did before and I am going to tell you why I think that is.

About two years ago I started a weight loss journey after my surgeon who did my hip replacement, fat shamed me. It had been quite a while since I had any real exercise and I had put on too much weight for my short body. He let me know that in no uncertain terms that I HAD to lose weight if I was going to have the new hip last 20 years like it should. He wanted me to have bariatric surgery. I have had many surgeries, 14 to be exact but this one bothered me. I didn't feel comfortable with it and it ate at me. I prayed and asked God to help me be sure that this was the route for me to take, but no matter what I said or did, I just couldn't shake the feeling it wasn't for me. I went to my first nutritionist meeting and I was so overwhelmed thinking about all I could have was shakes for months and if I would have the will to do it! I didn't want this surgery, it wasn't for me but I went back for my second nutritionist meeting. That's when I got my answer on the surgery. I sat down with her and she told me that the Dr. who was to do the surgery had resigned the hospital and they did not have anyone else to do that surgery and I would have to go to Charleston or Wilmington. God gave me the answer I needed to make a decision. This surgery was not for me! Charleston nor Wilmington would be convenient for me or my husband. There would be no bariatric surgery for me, I would lose the weight myself. So off to the internet I went, looking for any new diet trend I could find and there it was, KETO! The Ketogenic diet sounded so easy and doable that I jumped right in! First of all, the carbs had to go! The sugar, wheat, rice, corn etc...gone! NO bread or sweets first off just like most diets. I was shocked that this diet worked for me and two years later, I am still eating this way! I lost 60lbs on the KETO diet in a year. Now that doesn't sound like a lot to some people, but it was a lot for me! It made a world of difference in the way I feel. My fatigue lifted, my brain fog lifted and I started living again! High fat, medium protein and extra low carbs has my body a fat burning machine! I stopped losing for the last year after my thyroid surgery. I gave myself a break now and then, always dropping any weight I gained easily. I have started back on a strict KETO not dirty KETO or halfway KETO, strict KETO and I am again feeling better! If you haven't figured out how to start living with your chronic pain, look into your diet! I was never one to believe all that stuff about certain foods causing this or that but once I let them go, I am amazed how low my inflammation has been and my GI issues have been resolved. No more junky, processed foods, only the real thing for me. KETO certainly takes some getting used to, it's like you just let go of everything you've ever known about dieting! I had to learn how to dig into that big beautiful rib-eye and continue on! 
First and foremost, I give all the glory to God for my success on this journey. I thank you Father for giving me the will and fortitude to stick to eating healthier than I ever have before. This blog is just for me to release what's on my mind and tell others how I handle the everyday stuff that comes along with being chronically ill. God has changed my outlook, he has been my healer in more than one way! He can heal you too!

Take care y'all!

SHE'S BAAAAACK!

HEY everyone! I know it's been a while, I hope y'all didn't forget about me! I have been sick and busy and not having anything new to really say or I just haven't felt like it. Is that enough excuses? HA! I am a total mess sometimes. I have so much to say most of the time and then sometimes I get quiet. Now there are those who will beg to differ with me on that but I think a lot more than I speak. I have been battling my back of course. No real problems with the Sjogren's lately except yeah, wait.....a root canal! I suspect after 30 + years of no dental work having to be done and now all of a sudden I am starting to have problems could be from the Sjogren's. It could be from aging, except I just do not think 51 is old enough for my teeth to start decaying! I will have my first root canal tomorrow morning. Some say it's nothing and some say it's painful, either way, it took them 3 shots of novocaine to numb me enough for a filling. I really am not too worried about it, I am more worried about having to be there at 9 am! LOL! I hate early morning appointments and this one will take about 45 minutes to get to so that's even earlier to have to leave the house. My back doesn't work well in the morning, I will have to get up way early to take meds so they can get into my system good and I can function and drive. BAH! I will get through it, just bellyaching. Easter Sunday, had a beautiful day, church service was awesome, went to lunch with my hubby and then shopping at Lowe's. All of a sudden my ankle just gave out and down I went, so I was laid up with a bad sprain for a few days and my right knee was swollen and skinned and burning! Didn't help my back too much either. ! Now to my back, I've been having a lot more lower back pain again, way into my pelvis and tailbone area. I have also started having a lot of muscle spasms in my upper back and sides and my arms are starting to get tired easier. My Ortho asked if I saw a Rheumy, I told him I had and she did tests which I will get the results from on Monday. I am worried, a little bit that I may have Dermatomyositis. The reason is because I have been worried about it for almost 2 years since I started having the rash on my eyes and then the knuckles, elbows and knees and I found out about it. It's funny how 6 months after that started, my back started hurting and I started getting extreme fatigue and joint pain and dry mouth and thus started my journey with Arachnoiditis and Sjogren's within a month of each other. Well DM overlaps with Sjogren's too and the more weaker I become in my back the more I worry. I am praying that I do not have this as I don't know how much more my body can take. I have started since the warmer weather, to get up and do! I am making myself do more around the house, don't let it go, get outside, go shopping with hubby, whatever I can so I am not just sitting around moaning and groaning. I started back my therapy to get through all the pain and grief I go through. I have a happy mind y'all and most people who know me, know that I do. They know I like to have fun and laugh and they also know that I've changed a little. Pain does that to you. You are never sure just what you can get away with on the mornings you wake up with a plan. Sometimes I make it and sometimes I don't. I went on a weekend trip a couple of weeks ago to visit my daughter and grandchildren. I made it through with 8 kids all staying at her house with just she and I in charge! It was tiring but so satisfying. I got back home though and woke up with some kind of crud. I am sure one of those kids gave it to me but what would usually be gone in a day or two took all week for me to get over. I had NO energy at all. Good thing about it was I didn't have much laundry to do since I wore nothing but PJs for 5 days straight! I am loving the warmer weather, I am hoping that my pains and whinings will be less during the next few months. I am going to try and ride my bike again, I HAVE TO TRY and I can't wait for the pool to be warm enough to jump in. Meanwhile, my days will be spent as often as possible on the beach and enjoying the warmth, the water, the waves, the smell......I know!!! I know I am not supposed to do sun, but I will do it, just a little smarter than I used to but I am going to be in it, if I didn't have that to still look forward to, I might give up! I am done for the day and I hope you all have a wonderful end of Spring and a beautiful sunny summer! I am sure I will write some more but like I said, hopefully less until the cold comes again, when I really start hurting worse! Going to give it all I can the next few months to enjoy my life and my grandchildren visiting and friends too! Philippians 4:13- I can do all things through Christ who strengthens me. 

Love to you all! 

Cindy

Happy Easter

I just want to say, Happy Easter to all of my followers! I hope you enjoy your day with your family. I want to get into the pain management part of my condition next week....until then, have a very blessed Sunday! Luke 24:6 says He is not here;he has risen! 

Yes, I CAN!

I have still been struggling the last week with pain in my back, pain in my elbows and burning, stinging nerve pain in my arms. I don't know why they can't do something besides keep giving me these stupid steroid shots for my elbows that do not work anymore. I tell them, but they don't seem to hear me. Why is it that Doctors are more worried about losing their license for prescribing medications that actually help a person in pain other than worrying about the patient themselves? Look, I have been on pain meds for years now, off and on. I have a high tolerance for them unfortunately so they don't work very long for me. Now I am sure if I were to stop taking my daily doses I would know just how much they do help, but for those days with the flares so extremely painful, I should have a right, to have some kind of medicine that will take that pain away! My Dr. should have a right to treat me how he sees fit to treat me without fear of retribution. I am sure that there are many ways to tell if a Dr. is running a pill mill without making every Dr. in America feel like they are being scrutinized at every turn. Everyone's pain is different. I have extreme pain flares in my back from the Adhesive Arachnoiditis. I have had numerous surgeries and have had back pain on and off for 23 years now since my first surgery, but never anything like this! Arach is a burning hell in your spine and it doesn't let up and it goes away when it feels like it, all you can do is ride the rollercoaster until it stops! The joint pain I suffer with is different than the back pain. When it is in a flare, guess what? Nothing helps it either. I mean I am already on pain medication and these things still happen so common sense would say, she needs something else when she has flares. Anti inflammatories work on a low pain day, but not on a HIGH pain day or should I say NIGHT! Sometimes I loathe the darkness. Seems that's when my pain is worse, oh and if it's raining, don't even want to go there. I keep telling myself that I don't need to write this blog, that no one wants to hear me whine every day, but it does help me to talk about it. I don't feel like I am in this lonely hell with no outlet. This is it, my outlet. I may not write every day, I may not have anything to say every day, but I am going to keep writing when my brain says let it go.....here I am letting it go, so it doesn't bog my brain down with poor me all day. I do pray, I turn to God more about myself when I am in pain, most days, my prayers are for others. I fight this pain, I try and live a happy, normal life. I don't stay inside and hide every day, I do in the winter but Spring is here now and I will be out more. I don't want to just lay around every single day and wish I was outside, and wish I were visiting others, or wish I was going to that movie. I get up and I do it. I think if I stopped doing it, I would give up. Yes, I whine a lot, but I don't give up and that's important. I never knew how strong I really was until I became afflicted with these painful conditions. I have learned that just because I have a need to talk about it, it doesn't mean I am seeking attention or wanting pity, I am just releasing this tension I hold on myself about it. I am releasing guilt I feel when I can't do things, I am releasing all pressures I put on myself on a daily basis to not let anyone know I hurt. I will let you know, I have to let you know, it's a burden that can't be kept inside, if it is, the consequences would not be good.  Philippians 4:13 says, I can do all things through Christ who strengthens me.....Yes, I can!
Love to you all,
Cindy

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