Fires are Burning

Ronnie Milsap had a hit song years ago about how the man went to work while his woman stayed home and kept the home fires burning, She keeps the home fires burning. What a voice he had. I always loved that song because that is what I always dreamed of doing when I grew up. Falling in love, having children, and staying home to raise them. I was fortunate to have that dream come true. I may have missed out on the world but that was ok with me I was living my dream.

On days like today when that song came to mind it came to mind for very different reasons. Today I woke up fatigued to the max along with some other issues Physical symptoms I won't bore you with. I'm sure many people think, oh well don't complain we are all tired, but this is unexplainable. When I went to bed last night I had a plan for the today. Even as I was sitting drinking my coffee this morning I was putting my plan in motion, at least in my head. I sat for a while and forced myself to get moving. My plan was to vacuum and mop the floors and move onto getting out the Christmas stuff. I did it. I did! I had to push myself to the max and every ten minutes or so I would sit down and collect myself to get enough rest to go another ten minutes or so to make it to the next rest.That's how the day went. Do something, sit, etc. I accomplished more than I thought I would based on how the day started. Tonight I was suppose to go with Rich to a bible study but as you can tell that didn't happen. I jumped in the bath and thought about Ronnie's song and I thought about how much the home fires have changed. These days the fires burn inside my body and there are times I lose my control on them, at least to some degree. I tell you it would have been so easy to crawl back in bed this morning but I chose not to. I wasn't going to let the fire win today but it won tonight unfortunately. That's life when you live with chronic illness you pick and choose. You can still do things but it looks different now. There are times I win and times the fire wins. Frustrating? Yes! Very at times. But then I have to put my head back straight, find the peace, and remember all I can do instead of focusing on what I can't do. If you don't learn how to do that when you live with chronic illness the fire will always win and that is no way to live. Yes I am frustrated today but tomorrow is a new day and for that I am grateful!

God Bless!

Dianne

You Can't Take That

Today I started my day out bright and early, a four am kind of bright and early. No biggy I'm use to early hours with either my body waking me up in sheer pain or my puppies waking me up to eat or pee. It's funny how you sort of adjust to waking up early once it continually happens night after night. I'm one of the fortunate ones because I choose not to work so I can go lay back down at six or seven am if need be. This morning I had no choice in laying back down because I had an appointment for my yearly physical. Ugh right? I can't really say I feel that way anymore now that I have found the best doctor I have ever had. I am not lying on this one. You all might know how many doctors a chronically ill person has dealt with over the years and if not it is many, many, and many more. It seems when you first come to know something is drastically wrong with your body you will go to any doctor, specialist, or otherwise for an answer. It is grueling running from one doc to another, to say the least. Looking back on all the doctors I have been to I can recall appointments where I left crying because of the way I was treated and would call Rich hysterically so he could calm me down. Before I had blood work that indicated problems I was talked to in some of the cruelest ways imaginable, listed here in no certain order and many were said by more than one doctor. You are fine there is nothing wrong with you. Your pain is because you don't exercise enough. You need to eat a better diet. You need to talk to a therapist. You need to lose weight. I even had a sleep doctor tell me I needed to lose 100 pounds. Dare I go on? If I didn't need a therapist before a handful of these docs came into my life I sure needed one after I saw them. You have no idea how much pleasure it would bring me to walk into their offices with my diagnosis and shove it down their throats or better yet up their butts. Whoops my devil side emerges as I usually try to keep that side of me under wraps. I'm human after all believe it or not. 

Fast forward to today's appointment with Dr. Oostema.  When I got there the usual. Jump on the scale, height, blood pressure, etc. Results: weight up a little but no surprise. It's so much easier accepting I am plus size and will be forever instead of beating myself up about it. Height I shrunk another half inch. Blood pressure perfecto! In the past when I would see a doc and my bp was always high because I worried about how I was going to be treated now it's perfect which alone says a lot about Dr. Oostema. I always figure I'll get the weight speech because it happens so often but she has never done that to me. She is the kindest, sweetest, thorough, and most compassionate doctor I have ever been to. I am grateful for her care and not because she never talks weight but even if she did I would still love her. I feel blessed to finally be in the care of some top notch docs who listen to me and treat my issues and don't act like I am like every one else bacause autoimmune patients are very complex. 

Back to the real reason I started to write this blog post. When I began driving home my mind wandered to the past and all I have endure over the past twenty fives years of living with illness and I went to that dark place hashing over all that chronic illness has taken. My health, my energy, my faith in doctors and people (sadly), my sleep, my sanity at times, my joy at times, friends, ability to work, and the hundred other things that flashed through my mind in those few seconds. Then as fast as those thoughts came they were replaced with all my illness has given me. My ability to take time for myself and not feel bad about it, my hope in a cure even if it is my death, my wonderful team of doctors who all keep such a close eye on my health and who lift me up instead of tear me down, the love of my family and a few close friends, my ability to drive and shop even if it isn't an all day trip, my ability to see what really matters and what doesn't, my life is a good one despite all the obstacles I come across. I must say instead of leaving my doctor visits in tears these days I leave refreshed and renewed because they give me more hope than I already have by telling me I am doing a great job taking care of myself. Can I lose weight? Sure I can but can't everyone? Can I exercise more? Of course but I exercise some and that's what matters. No one on the planet can do everything perfectly but trying is what matters. Can I do better with sleep problems? Probably but I sleep the best my body will allow. Point is I do the best I can with what I have to work with. Haha. I thought about all illness has taken away but more importantly I appreciate all illness has given me and that is what I am going to continue to focus on! The ongoing HOPE!

God Bless!

Dianne

My Get Up And Go Got Up And Went

And the autoimmune saga continues. A few short weeks ago i decided along with my doctor to cut my dose of leuflonimide down from 20mg to 10mg because of the side effects I was experiencing. I was hoping this wouldn't be a big deal figuring the drug would still be in my system. Boy was I wrong. The day after I saw my Rheumetologist we decided I had to go off the drug completely for two days before the decrease in hopes that would help with the side effects. I followed the doctor instructions as I always do and within those few days my side effects had vanished as fast as they came. I started the lower dose two days later. The downfall was that my symptom control decreased right along with the medication decrease. After a week my fatigue, that I almost forgot about, returned with a vengeance. Autoimmune fatigue is a fatigue that is very hard to explain unless you have experienced it. Imagine trying to pull yourself through four feet of mud in everything you do. It is debilitating to say the least. Just functioning takes all the energy you have. I am having to force myself to do anything. Literally. I went to swim class the other day and I hardly made it through. In fact I left twenty minutes early and never felt refreshed like exercise is suppose to make you feel, so I'm told. Not for me I came home exhausted.  This fatigue is not a mind over matter thing like when people tell you to get moving and you will get more energy. No it doesn't work like that for us. If we don't listen to our bodies and rest the fatigue will put us down for days. I know this sounds crazy to the real world but to us chronics it is more real than you know. Please understand.

My joint pain and stiffness have slowly returned to the point where I getting out of bed is hard to do. These are the times I begin to feel depressed. Alone in my own hell I begin wonder how much more I can take but then I remember I have a Rheumetologist and it is time to call him with an update. I don't know why it takes me so long to reach out for help. I think it's my will to not let the disease win. I try to wear my badge of honor and courage as long as I can in hopes that the symptoms will magically disappear "tomorrow." The famous last words when you are a sicko. Sadly the disease always seems to win. I sent a message to him when I finally gave into the fact that tomorrow isn't coming. 

My biggest anxiety right now is the holidays as they approach. Entertaining is grueling. I love Thanksgiving but it doesn't love me back. Having people over and cooking throws me into a tailspin for a week after. What I call my recovery time. I don't make any plans for a week after I have a get together because I know my body will need that time to rest. Once again the disease wins. 

Later in the evening my doctors nurse called and told me to increase my dose back up to 20mg so today I will do so. He also gave me a few tips to help control my side effects but believe me if they don't help we are going to have to consider other options for treatment. One plus side to autoimmune disease is there are quite a few options for treatment. It is a matter of finding what works for you and that can take time. Patience.

Yes my get up and go got up and went but I am hopeful it will get up and decide to come back real soon with this increase. Push on and keep fighting because no one else is going to do it for you. It's up to you! Oh and most importantly reach out when you need help. Lesson learned...I think?

God Bless!

Dianne