Heartbreak

It breaks my heart into a thousand pieces when I read Glenn Frey the founder of the Eagles died. I had no idea he had Rheumatoid Arthritis and Ulcerative Colitis, two for the price of one I guess. This happens more than you think. Once a person is diagnosed with one autoimmune disease chances are they can be diagnosed with another. Like I said my heartbreaks. Reports said he died from complications due to the pneumonia. Sadly people with autoimmune disease get pneumonia very easily because their immune systems are compromised from these diseases. What does that mean? A good example would be if a person with autoimmune disease gets a cold and a healthy person gets a cold chances are the healthy person will get better in a week to ten days while the autoimmune patients cold may take weeks to get better. Often the cold turns into an infection like bronchitis, sinus infections, and pneumonia to list a few. It's never easy when you get a cold and as soon as it starts you begin to wonder what's to come. Pneumonia is always in the back of your mind especially when you have dealt with colds turning into infections in the past. It can be an exhausting way to live having to always be one step ahead and aware of all that is going on with your body at all times.  I think about Glenn and when I think of his death I don't think about his pneumonia. I think of how much he must have suffered. I wonder how many years he suffered with the symptoms of RA and UC, each one alone is a brutal disease but to live with both? It sure couldn't have been easy for him or his family. Yes there are treatments for these diseases but it doesn't cure them or take away all the symptoms. My heartbreaks.

I wrote the above last evening when I heard the news of Glenn's death and decided I would sleep on the rest of what I would add to this. You know how life is, at least for me, pondering on the crap parts of life takes time. I wonder when people heard of Glenn's death and disease's if they even cared about the why. It's like cancers, heart disease, etc. The fact that no one can argue is that if it isn't happening to you it sort of passes in one ear and out the other. Sad fact but true fact. When you or someone you love struggles with one of these illnesses on a daily basis you understand this. You learn to deal with illness on your own because the world is busy. People don't care much because you aren't fixable. They don't know what to do to help you so they avoid you or pretend it can't be as bad as it is. Who has time for ongoing illness that will more than likely never end. The chronically ill wait for cures to all these crappy diseases but sometimes death comes before cure. I wonder why we never heard about Glenn's illnesses. We all deal with our struggles in our own ways. Some people are an open book while others are very private. It is all a choice. I wonder if people keep things private because in an odd sort of way it makes it not as bad as it really is. I don't know the answer to any of this because of all the dynamics that go along with being ill. It's like layer upon layer upon layer to infinity. Heartbreak.

Today we live. We do the best we can whether we deal with chronic illness or know someone who does. What can we do? Live and do the best we can!

God Bless!

Dianne

Back At It...Again

Exercise UGHHH! I must admit I don't enjoy exercise unless it is disguised as fun. I cannot count the times I have made the commitment to myself to get back into it only to get started and fall off the wagon. I must admit I enjoy the benefits when I do get off my butt and do it. It isn't like I don't exercise at all I walk a lot when the weather is cooperative and I take it as a message from nature to get off my lazy butt and get out there when its nice outside. The truth is I'm lazy when it comes to exercise. How can I deny that when it is a fact? I would rather clean a cupboard or mop the floors than exercise. Yesterday I decided I needed to stop making excuses as to why I didn't want to exercise. Winter has hit here in Michigan so my ability to get outside and walk has diminished drastically. I was hoping this warm winter was going to last until spring but now that it is bitter cold and snowy this week there is not much going outside for me. I try not to go out much when it is like this because I can't take the cold very well. I ache when I am out there and it feels like my joints are being cut open with shards of glass when it is bitter cold. I also fall when I am out in this weather. It never fails I am the one who hits the little patch of ice that bring me down on my butt. I always joke that is the reason I have to keep eating because I need the butt padding to help me from breaking a hip. Exercise has been hard for me the past few years because of my shortness of breath so it was much easier for me to take it a little slower in the woods than fast on a the treadmill.
I decided yesterday was the day I was going to get back at it...again, so I did. I walked on the treadmill for ten minutes and rode my bike for five minutes. I must admit I felt better afterwards. This morning I got up and decided I was going to do it again and I did. What's different this time? I decided I would make some changes this time compared to the past exercise plans that failed. This time I'm starting out slow. This time I'm not telling myself I only did ten minutes but that I did ten minutes and that is good for me. I'm not focusing on how fast I go, or how far I go, or how many calories I burn, this time the focus will be on the fact that I am doing something. If you have watched television or listened to the radio lately you know we are being bombarded with diet and exercise plans telling us we are fat and that nothing we do it enough. I am NOT listening to that crap anymore. I am doing what is right for me and what is right for my body. I have to because if I don't I will pay dearly. I am focusing on what feels good and if I do too much one day I know I will have to pull back the next day. If my body hurts more than usual maybe I will need to take a day off. I think and believe those of us who suffer with chronic illness and pain need to get to this point where we are okay with what we can do and not with what we can't do. I believe we all need to learn that everything we hear or read about exercise and diet is ninety-five percent based on profit. I believe none of those people care about me and what price I pay if I follow their plan. I know their plans will only make me worse while they get rich. I have finally gotten to a place of I don't care what other people think or say I must do what is right for me, it is critical that I do. This sure doesn't mean I am still not hard on myself because I am. That is one of the things I do best. I believe when you are a perfectionist that is all you know how to do but working on it and changing your mind set and not caring about all those outside messages helps you to not be so rough on yourself. If that makes any sense. I'm sure the other perfectionists reading this can relate. This morning I got out of bed, woke up, got moving, and heading downstairs to the treadmill and bike. I am happy to say I added three minutes on to the treadmill from yesterday all the while wondering if it was a good idea that I did and if I was pushing it too much. Time will tell. The most important thing is I am doing it. I'm sure there will be those days it isn't going to happen and I am going to be okay with that too. It's all a balance like everything in life. Hopefully you all are able to get to that place that is right for you when it comes to taking care of yourself and learning what works and what doesn't work for your body. I wish you the best and remember, you are not alone!

God Bless!

Dianne

The Price Of Illness

Thinking about life I realized there is a price you pay for everything. If you think about it deeply there is a price to be paid with almost everything we touch or in anything that touches our lives. Love has a price with it's up and down like a roller coaster and anyone who tells you different is a liar. Relationships have a price on so many levels. Freindships that come and go and others that stay or those that always hold a special place in your heart no matter the distance or time spent apart. Children, there's a big price in raising them. You spend 75% of the time questioning every decision you make with them, even as they grow and leave the nest, and the other 25% beating yourself up for things they will never remember. They leave and you try to figure out who you are without them. I am still trying to figure that out after all these years. Relationships that use to be but will never be again and realizing that's okay. The price we and others pay for their actions are not always easy but they are life. 

The price we pay.

Sitting here in the basement, nice and warm, I think about the price we pay for heat, not to mention a roof over our heads, the lights, and the tv that are all running on electricity. The price of comfort doesn't come cheap at all. Thinking about the cost of having a place to live I become overwhelmed at the price of it all. I wonder why we need so many "things" in our lives. This is a huge struggle for me but I wonder if that is true because I am unable to work and contribute. I remember when I use to work and we would use my checks to buy groceries. It gave me some satisfaction that I was a part of keeping our family afloat. These days the most money I get is when I cut my parents hair and they feel better if they pay me. Guilt money I call it but there is no arguing with them about it. I usually take that money and buy something I need like shoes, boots, coats, etc that way I can tell them what they bought me and feel better about taking their money for something I would gladly do for free. The little bit of paper work Rich brings home when he needs a helping hand that oddly makes me feel needed in the work force even though I never leave the house to do it.  It's painful when you can't work. Funny how illness takes that away from you. All the things you want to do in your head but can't. 

The price we pay.

The price of illness. I'm not sure why this subject is weighing so heavy on my heart lately but it is. Possibly because the price of Christmas just passed and I feel like I contributed zero. According to Rich that isn't the case because he always says I work as hard as he does which makes me laugh outloud, at least on the inside. He always tells me there is no reason for me to work and I need to take care of myself. I understand where he is coming from but when I see medical bills that insurance doesn't cover or knowing in a few months I need to get implants to fill in the gaps of teeth lost from the Sjogrens. The price of all the copay's of my medications that were just refilled that give me mounting anxiety about not being able help pay for the thousands in bills. It's scary and unknown when you are at the age in life where things should be different. I see Rich work his ass off only to put it all back out there and mostly for me. I watch him give up things that he should be able to do for himself but doesn't. The price of chronic illness is devastating, at least to me. This is the price we pay that no one sees. It doesn't stop at the financial side it's even bigger than that. The price a chronically ill person pays when it comes to relationships is way bigger than the normal prices paid that I listed. My illness controls my relationships I don't control them. I/We continually have people who want to go out or see us but I have only enough energy to expend on few relationships. This doesn't mean I don't want to see people it's just the cold hard truth. One night out can set me back for days. I know that is hard to understand but for me it is the price I pay. The price only I can understand and have a hard time finding words to explain it to anyone. Always having to look ahead and ask myself, "What is going to be the payoff if I do this?" There is always a payoff and many times it is brutal. How doea one explain the price I pay to the world? You don't because many people think if I get out it will do me good or if I exercise I will feel better or if I take this vitamin I will be cured. This in turn makes the price I pay even more difficult because there is no understanding.  Rich is the only one who knows and understand because he pays the price too. Living with me and taking care of me is his price in my illness. Not fair, not fair at all. I believe the price a chronically ill person pays is 50/50. 50% physical and 50% mental. Keeping your head above water is half the battle. It gets hard sometimes, especially when you aren't doing well,  to keep the focus. Christmas and New Years fatigue have plagued me big time and I am still paying the price. I can barely do the things I have to do without wanting to plop on the couch. The price is too big for me right now but I continue to keep my focus on the fact that this too shall pass! I know it will.

The price we pay.

I'm not sure the reason in writing this blog except to help myself come to terms with the price I pay on a daily basis, to be okay with it, and know it will get better. I still hope that one day I will get the answer to why but until then I press on and do the best I can! I hope you can too!

The price we pay.

God Bless!

Dianne

Another Year In The Books

Ah the book of life, whatever that means. I just had another birthday which makes that fifty three to be exact. I was sitting here trying to remember all of my fifty three years and trying to remember the most significant years I've been taking air in my lungs. Of course my memory can recall all the significant first. First love, first kiss, first broken heart, first job, so many other firsts the list is too long to write about. But there are the firsts and only's that are nearest and dearest to my heart, getting married, having children, grandchildren. Funny how when we think of all our significants 95% of them have to do with people and relationships. I know for me that's all that really truly matters anyways. I honestly could live in a tent as long as I had my people and the love they bring into my life. A perfect life? No, far from it but a good life none the less. I always have believed life is what you make it.

The past few weeks I have had time to reflect on the past ten years living with this monster called chronic illness. It seems like a curse but at the same time a blessing. I added another illness to the list two weeks ago and dealing with the diagnosis was devastating, at least when I first found out, but now that I began treatment I am dealing much better. It's funny when you are sick how you don't care about much at all. Your head is trying to make sense of all of it and you wonder how much more you can handle but then wala as you get treated and begin to feel better the light begins to shine again. It's a little sad that your light never really shines as bright as you think it should but it shines none the less. The blessings of illness. Your ability to see things in a different light. You don't have time for drama and bs anymore because you're too tired for that. You walk away from it and feel a peace. You see what matters in life and what doesn't. I believe age does that to us but being ill magnifies it times ten. I use to let people walk all over me but not anymore. I never spoke up when I didn't agree with people and now I can't guarantee what is going to come out of my mouth if I disagree with you.  If someone disrespects me I speak up and I like this side of myself. This includes doctors I deal with and other medical staff. When you deal with the medical field a lot you must learn to be your own doctor. The breathing problems I am having I have had for years. It's disheartening to me as I look back and think of all the doctors I have talked to about it and not once had any of the said anything about doing a lung function test. I should clarify, that is until now. Here comes the part about being in control of you own health. I found my new primary doctor two years back and she is taking such good care of me. I didn't mention the shortness of breath to her before because I figured I had already told so many doctors including my Rheumatologists so why tell her? Boy big mistake and lesson learned. I mentioned it to her at my physical a month ago and she took full control. Tests ordered, diagnosis made, medication started, results of treatment starting to take affect, and I am breathing much better already! Lesson to all of you: If you know something isn't right don't give up. Keep telling your doctors and eventually, sometimes years, someone will help you. It's just a matter of finding your right doctor. Keep opening your mouth you know your body better than anyone.

Looking back on my life, on the past ten years, but especially on the past year all I can think is wow. Wow! How often do I think that? How often do I say that word outloud? Sometimes in a happy tone, WOW! Many times in a disbelief baffled tone. wow. I'm thinking about all I deal with that no one can see and I think Wow. I am one bad ass bitch. That's right I am! My struggle is real, maybe not to the rest of the world that sees makeup, nice hair, and on occasion more than stretchy pants but to me it's real. I have to think of it as an adventure. Maybe an adventure movie where I'm the lead actor fighting off the bad guy. I'm waiting for the ending to come where I finally win, I know it will come, someday. In the meantime I will live it the best I can. I continuely tell myself I'm here for a reason and my work here must not be done yet. Either is yours!

Here's to another year in the books. Cheers!

God Bless!

Dianne 

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