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

Underground World

When I think of the underground world I picture people living their lives outside the lines. Thoughts of illegal activities going on and people running away from what is suppose to be the gold standard of life. The rules are flushed down the toilet and I wonder if the people who live in this made up underground life ever feel guilty or scared. Would an underground way of life make life easier or harder? Why in the world would I think like this? I'm sure it sounds like I am cray cray, I might be a little, but in all actuality I am more sane than most. I over think everything and wonder about how people act and treat one another all the time. Human behavior intrigues me. My thoughts go deeper than the rest of the world when I have encounters with others. The main reason my thoughts went to an underground world is because of a trigger. I had a doctors appointment yesterday that I left feeling very odd about. The appointment went ok but it left me comparing it to the last appointment I had with this doctor. See, this is where my encounters with others goes deep. I can never let my meetings with even my doctors appointments be just about that one appointment. I have to go deeper and compare how the last appointment went or the one before that went. I can never understand people who treat you differently every time you see them. True colors come out when you compare your encounters. After I left the appointment and for the rest of the day the underground world came to mind. The underground world I was dreaming about went something like this. It actually turned into a what if underground world. What if there was an underground medical world? A place you could meet a doctor that truly cared and just didn't want to pass you though the door so they could move on. A place where you could get straight answers to all your questions and have your issues taken seriously. To be fair I know doctors are busy and I don't expect much but it would be nice to leave feeling like I am armed with a plan so to say.  I wonder if the underground medical world could solve this? I wonder why I see doctors at times. True colors showed through when I was left with no Rheumetologist for a few months. No one takes it seriously when you are sick. It felt like oh well sorry you don't have a Rheumetologist but deal with it on your own oh but call if you have issues. Then you call and no one wants to help you. I get more frustrated when I see or hear advertisements on tv or radio about how every health care system tries to convince you they are there for you and they have the best care. I do believe this is true if you are dying but in the real world of chronic illness I wonder. I guess this whole entry is about my frustrations. Although I try to stay positive as I live through this hell there are times I get very discouraged and want it all to end. I know it will someday and for the time being I have to pull myself back into reality and out of the underground world. I have to hold onto to hope that the next appointment I will leave feeling more heard. As a patient my hope would be that doctors would take the chronically ill more serious. It seems at times we are looked upon as complainers when we aren't because we are truly suffering. My main issues yesterday was my feet. The conclusion was it it just the Raynauds so in other words live with the symptoms. Keep your feet as warm as possible. That's that. I read some more on Raynauds and now I can see this is what my problem is and I will do what I can to help it although this is one of those deal with it and basically there is nothing we can do for you. See you in eight weeks. To me I leave and in my head all I hear is I have to live with this for the rest of my life? It can bring you down. It wasn't what I wanted to hear at all. I'm tired of fighting with my body on a daily basis. I'm tired of just being a number in the medical world. When I get like this I have to pull my head out of my ass and get busy doing things that keep my mind off the pain and frustration. Today I'm going to be getting food ready for the weekend because Richie and Leah are coming for a visit. I'll crank up the jams or watch some Netflix. I'll work hard on putting yesterday behind me and come to terms with the fact that it probably wasnt the doctor or medical world at all. It is all me. Me wanting to escape to the underground world where no suffering existed. Ahhh what a thought. I believe the underworld fantasy will bring me to some sort of peace today and for that I am grateful. Keep pushing on!

God Bless!

Dianne

Shitstorm

The title of this blog entry sure doesn't sound very pleasant or appropriate but the word ran through my head when I woke up at four am this morning with burning pain and numbness in my toes. This is a new issue I have been dealing with for the last month or so that continues to escalate. I plan on talking to my Rheumetologist next week about it and hope to get a diagnosis and some relief. I'm pretty sure I know it is neuropathy but I need to hear it from him. I'm dreading the diagnosis because I read that neuropathy is a side effect of the new medication I am taking and the only way to stop the neuropathy is to stop the medication. This is frightening to me because this drug is changing my life. I have only been on it three months and am happy with the symptom relief I am experiencing. I have done more in the past three months than I have done in the past three years. Once again I have to be careful who I tell this stuff to because for some reason when I write or tell people I'm doing better they think that means I am available to them and able to do things like I use to. Wrong! That's not how it works. I still have bad days and many symptoms I deal with so my better looks much different than what the better means to the real world.  It took me many years to get to a place where I now know it's about taking care of me first and then my family before I can give to the world. Selfish? No way! Reality? Yes! When I woke up at four am this morning and laid there wide awake with Ella snuggled up next to me I started to focus on my feet. I wasn't thinking about the pain because I have learned when you live in pain you fight it every minute. I focused more on the reality someone who deals with chronic illness has to face, the what next reality. The more I thought about it and came up with no answers one word came to mind. Shitstorm. When I thought about the word I thought of something looking like a tornado running through my body giggling like the devil asking himself what part of her should we attack now? I know lets go for the feet that'll piss her off. Mawahahahaha. I know that sounds insane but it's how it is for us. We try to make sense of somethings that will never make sense and we have to laugh about it by making up crazy scenarios in our heads it's almost like a coping mechanism of sorts. When I got up this morning I decided to look up the word shitstorm. Shitstorm: A vulgar dysphemism for a chaotic and unpleasant situation. Dysphemism? Ok Wikipedia way to big word for me. Of course I had to look up that word since my intelligence is that of a third grader. Dysphemism: Expresstions with connotations that are offensive either about the subject matter or to the audience or both. Dysphemism is sometimes motivated by feelings of such as fear, distaste, hatred, and contempt. Wow that was a mouthful. Pretty spot on.  I could spend hours breaking all that down but I'll leave it to your own imagination to figure out. All I know is shitstorms suck. In life there are so many different shitstorms and many of them we create ourselves. We all have those times and those shitstorms are called life. What happens when shitstorms are not caused by you and are beyond our control? That's the part I have a really hard time understanding. The shitstorms that wake me up at four am and keep you guessing as to what will be next. I may never get the answers, you may never get the answers, but we continue the fight. We stay one step ahead of the shitstorm and continue to live our lives the best we can. We love, laugh, give, some days we just breathe, but we never give up! I hope and pray today is a shitstorm free day for you and if not then do the best you can where you are with what you have!

God Bless!

Dianne

Who pushed the button?

I remember back when I was a kid living in a time where making our own fun was all we had. We didn't have toys that worked for us or cell phones and computers to play games. Life seemed so much more simple back then. We rode our bikes a lot and I remember using a clothes pin to attach a playing card to the spokes so when you rode down the road your bike would make the clacking noise. I'm not sure what the thrill was but mostly I think it was the challenge of proving you could get that clothes pin to stay on longer than anyone else could before it would flip off and you would have to search for your missing card and pin only to start all over again. We did this for hours at a time. We also use to make our own fun with marbles, match box cars, and anything else we could find. Erecting things so if one thing hit something else it would cause a chain reaction like dominoes. If we had the car at the top of a ramp it might set off a marble to fall in a bucket. What does any of this have to do with being chronically ill? Before yesterday I hadn't really been thinking about it but last night when I was talking to Rich it hit me as I realized the reality of inflammation on the body. I have been going to the swimming classes twice a week and since I started the class my right foot has been progressively getting worse. I have a lot of problems with my left foot and have for many years so I depend on my right foot to compensate for the left. The plantar fasciitis has set in on the right and I have had to back off the pounding exercise in the pool for a few sessions now to give the foot a minute to heal. As I was talking to Rich about it last night I remembered what a doctor told me after I blabbed on and on to him. The reality that my foot is in a lot of pain forced me to tell him about the pain and swelling in my knee too. My neck has been more painfulI too since this foot thing started. I haven't been sleeping well at all because the night time pain throughout my body is causing me to toss and turn trying to find that sweet spot that is hard to find when inflammation is on overload. I explained to Rich as I have a hundred times that for most people who deal with plantar fasciitis that's what they deal with but for someone with inflammation an issue like plantar fasciitis sets off a war throughout your whole body. It pushes the buttons so to speak, hence the whole body pain issues. I never would have connected this had it not been the doctor I use to have who helped me with my neck and hip pain issues on a weekly basis. He use to tell me he had to be more careful with me because of the fact that working on someone like me can set off more inflammation. I sure do miss him because on weeks like these I would go see him and he would work on my muscles and give me some relief. Inflammation for me is like those games I use to play as a kid. The domino effect. One thing starts and another is set off. It is not only a physical challenge but a mental challenge. It is so easy to give into the, "I really don't feel like doing anything today," self talk when I feel like this but I can't. Rest is what I need but then mentally I feel like a failure. Yesterday I woke up later than usual because I had finally found a position that allowed me to sleep for a few solid hours. When I got up I sat in my chair and had a hard time getting my body going. Finally I told myself get up now! I did and in my usual fashion I talked to Eva because she follows me everywhere saying, "We are getting a late start today but at least we are starting!" Would it have been easier to sit down a majority of the day? Yes, but there are so many things to do why waste it sitting and feeling sorry for myself? I won't fall into that, ever. I'm in control of the buttons and I decide which ones get pushed, at least when it comes to the mental and emotional side of chronic illness, the physical not so much. I woke up today and the foot feels somewhat better than it has been. I've been doing art projects so the rest of not walking so much is paying off. Time will tell when the inflammation decides to subside and I can return back to my usual daily activities, until then I will win and continue to control which buttons are pushed!

God Bless! 

Dianne

Socially Inept

We are very fortunate to live in the Grand Rapids Michigan area for many reasons but one of the best reasons is Artprize. If you have never heard of Artprize it is a huge event in the city where artists from all over the county set up their masterpieces in businesses, museums, and on the streets. The artists compete for the $500,000 in prizes and the recognition of their talent. You will find any and all types of art at Artprize and many pieces will stop you in your tracks because they are so amazing. I love the fact that the artists are at their venues to share and delight with the crowds that come down to see thier work. In the normal/real world most people head down to Artprize for hours and roam the streets to enjoy the art but for the chronically ill person it isn't that easy, at least not for me.

It is the times like these that the harsh reality of my illness hit me like a ton of bricks. The reality of my life comes crashing down full speed. I become angry and bitter and quite honestly mad at this illness crap. In my head I stomp my feet like a two year old having a tantrum when they don't get what they want. I don't understand how unfair all of this is.  Rich took the day off yesterday so we could go to Artprize. All week he kept saying, "We will do however much you can handle." Like I have mentioned before when I go to events like this or any social event for that matter it isn't about just planning what time we will go and where we will go after. For me it is like Rich said, "Whatever you can handle." All week in the back of my head I was going to handle it well. I psyched myself out with the constant thought of spending the afternoon there. I was going to last and try to see as much as possible. Then reality hit yesterday when we got there. Don't get me wrong I was still hopeful I would make it for a better part of the afternoon, my hopes were high. We started out at the Amway Grand Hotel and Devos Hall which I was told by my parents to make sure and see. These two venues are quite large so it took a while to walk through it all, so it seemed. We decided to go during the week because we figured the crowds would be smaller but that was a pipe dream. It was crowded so it was hard to take any significant amount of time at the pieces that you needed more time to absorb and admire the artistry. There were many pieces that needed the time believe me. By the time we were done with those two venues I was done. In fact I gave into the fact that there was no way I could do much more. We decided to walk down to the Bob which is a large building with many restaurants in it. It has a large parking lot area by it that is usually filled with the larger art pieces. We walked the few blocks to get there to find nothing was there. I remember looking at Rich and saying, "Are you kidding me?" The real world would think oh well let's go somewhere else, the chronically ill think I just walked two blocks for nothing? Energy used and burned for nothing? It was then and there I knew it was over for me. I asked Rich how far the car was and he told me and then offered to pick me up and told me to wait for him on the corner by the Bob. Of course I would never give into that. If I do illness wins and that is never going to happen. We started making our way to the car, got to the elevators in the parking garage, made it to the car and jumped in. It was 1:15. When I looked at the clock I was sad and shocked. Sad because of the fact we got there at 11:30. Do the math. It felt like hours to my body. After I ran the time through my head and did my own math I told Rich, "I am pathetic, not even two hours and I'm done." Of course he said something about it being fine and that I did good but truthfully I can't remember exactly what he said because I was still beating myself up over not even lasting two hours. These are the times no one could understand what it's like living with chronic illness, especially me. 

We had plans to find a place to buy some apples and headed on to our next destination. I decided I had to leave all my sadness and odd sort of guilt behind. Move on and quit analyzing it all. I made it to Artprize. Yay! I haven't been there the last two years so this was progress! We talked about making another trip down there. We figured if we find places that have many pieces to see there wouldn't be quite as much walking. We have the map now and will be able to map out a plan. We talked about a few of the pieces we really liked which put that hope I like to hang onto back in my heart. Take that chronic illness you will never bring me down so bring it on! Until we meet again Artprize!

God Bless!

Dianne