Here we go again

I have been pondering over this blog for a week or more and have been waiting for the moment to hit me when I felt confident enough to write it. Every single time I write I feel like I run the risk of sounding like a whiner and a whiner I am not. I am sure some people who don't know me could take my blogs the wrong way so there is that struggle with having a blog and sharing your illness journey. I saw this last week and thought how perfect it is for a blog:

How true and how sad both at the same time. When I first read it I was reminded of the first time I saw my new rheumatologist. He was checking my joints and would ask, "Does this hurt?" My answer was well yes but it's because of this or because of that. It seemed every time he asked if something hurt or asked if something gave me issues I had a counter offer so to speak as to why it hurt. My knee hurts but that's because I have bad feet. Me elbow hurts because of the tennis elbow I had been experiencing at that time. Funny how that elbow pain disappeared when he started me on a new treatment, Humm. I remember after every excuse I gave him he would say, "So that's a yes?" I remember staring at him with the deer in the headlight look only later to realize how much I minimize my pain. "So that's a yes?" "So that's a yes?" It's painful to say, "Yes that hurts," to every issue I deal with. I remember after a few times of him saying, "So that's a yes?" I gave in and just said,"Yes," without making anymore excuses. Finally a doctor who understood. 

The more I thought about it after I left that first appointment appointment I realized maybe I minimize my pain to make other people feel better. Or maybe I do it to feel normal in a life gone wrong. Or maybe if I deny the pain it really isn't happening. Or is it because of all the doctors in the past who told me I was to fat or lazy and needed to get moving more, little did they understand moving more caused more pain and put me in a vicious cycle of hell, besides I was moving already and I was still suffering. I don't know. The mental anguish is so much harder to handle than any pain that is thrown my way. I think. It's easy to say that now as I am on steroids once again, fourth time in three months to be exact. I'm sure my bones are not happy but the rest of me is feeling better at least for a minute. The strange part about steroids is you do fine on them and as soon as you wean off the trouble starts all over again. As my Rheumotologist said last week, "Getting off steroids is like letting the horse out of the barn when it comes to autoimmune disease." Makes perfect sense because that is how it feels. Last week I called him because my knee was so painful for over a week and I knew the arthritis was acting up. I was hoping for a steroid shot to get me through the pain and allow the knee to heal but when I saw him he said he needed to have an ultrasound. He was pretty sure I have a bakers cyst but wanted to make sure before he treated it. I started the steroids last Friday and within twenty four hours the pain was better. It's funny how steroids can mask a problem that is actually still there. I went for the ultrasound yesterday and of course he was right, bakers cyst caused by the arthritis. It's funny because a bakers cyst has nothing to do with baking it is just the man who discovered what a bakers cyst was. Crazy name. Although if you're going to have cyst why not one that reminds you of donuts and cake? What actually happens with a bakers cyst is the knee becomes inflamed and it produces extra synovial fluid. The fluid builds up in the knee and because of the knee cap the fluid has no where to go but behind your knee where it causes a cyst. All I know is it caused a lot of pain and sheer exhaustion. The pain was so bad at night I tossed and turned all night in pain. Night is always a bad time of day for anyone with arthrits but this was beyond any pain I have experienced besides my cervical pain before I had those joints fused. Before the steroids last week I could hardly think straight because the pain was so exhausting, hard to explain unless you have experienced that kind of pain. 

Doctor said if it does turn out to be a cyst then next week when I go back he will drain it and shoot me up with steroids in the knee and we will have to keep an eye on the cyst because they do tend to come back. I am hopeful the treatment will work but with my track record... In the meantime I am thankful for the oral steroid treatment. Here we go again with the vicious cycle. Wondering if it will ever end and knowing what that it probably won't. Coming to terms with that reality isn't easy but I have to make it doable. I will continue to keep my head focused on brighter days and try to leave the darker ones behind. I will continue to fight in my illness journey because I know no one else can do it for me. I'll use my story to encourage others and that is what gives me hope! All at the risk of being a whiner.

God Bless!

Dianne

He Can't

I'm sitting here trying to keep an open mind and forcing my mindset to the world of positives even though it is extremely hard. When I get to that place of throwing my hands up in the air and giving up I have to fight to keep my head above water. The thoughts that I have that I have to live like this for the rest of my life become overwhelming and I wonder if I can.

I am having a rough week on so many levels. I was put back on steroids for the third time a few weeks ago and when I took the last magic pill it's like my immune system went even more haywire, this happened the last time too. I asked my Rheumatologist why I have such problems when I taper off the steroids and he said it is because I am probably tapering too fast. I'm a slow learner but after this week I realize I must tell the doctors who treat me with steroids for other reasons besides the joint pain that  I have to taper more slowly.  Aside from joint pain that is on the rise I still am dealing with a sinus infection that started last February. I'm pretty sure this is the worst one I have ever had.  I went yesterday and was put on the third antibiotic in three months. Good news is no steroids because my breathing is good and I am extremely thankful for that because I have been dealing with that since February too.  I sure hope this treatment works because this is no fun and I don't want to even think about what will come next. I know since I already had sinus surgery in the past there is a good possibility of it in the future. Truthfully I'd rather be chased by a bear protecting her cubs than go through that again. It's that bad. My brain is on overload with all that is going on with my body from head to toe, literally, but I'm not going to let the body win. I don't feel like doing anything so to keep me going I bought a 1000 piece puzzle. I'm loving puzzles and I'm not to proud to admit I'm good at them. It's good to have something to do because it keeps your mind off your aches and pains when you have them constantly. Being sick like this for three months can take a toll on you so you have to have your bag of tricks ready at all times. It's very hard this time of year too because Rich is so busy at work and we don't get much time together.

I'm so thankful I also have my dogs and now my cat to keep me going. Out of all my medical treatments I believe without a doubt the number one best therapy for me is Eva, Ella, and Portia. Having either one, two, or all three of them at my feet or on my lap all day long gives me hope. Yes there are times they are too needy and when I don't feel well it might get overwhelming but then I think about how fortunate I am to have them to push me, to keep me from falling into the dark abyss that would be so easy to fall into. The other day when Rich and I were talking we were talking about the dogs and the cat and I was laughing and jokingly said I promise no more animals and he said, "If you want more you can get one." He said it very seriously and I knew he meant it. At the time I laughed and blew it off saying, "No way, three is enough I only have two hands to pet them." End of convo. It didn't hit me until the next day when I was driving in the car that the realization of him saying, "If you want more you can get one," really meant. When I thought back on how he said it and the look on his face it was like everything else with him. He would go to the end of the earth to get me anything I want. If I see something in the paper or on tv and make a comment such as, "That's cool," or "I like that," his answer is always, "Get it for yourself." Nine times out of ten I don't say it because I want it but because I like it. The reality driving that day hit me hard as it has before. He would lasso the moon out of the sky for me because the one thing he really wants to do for me, he can't, he can't make me better. He watches the suffering and being a male and a fixer he wants to fix my illness but, he can't. That realization is so painful for me because when I turn the tables in my head and if it was him I would want the same thing. I have always said illness is so much harder on the ones that have to watch the suffering than the the ones suffering, at least in most cases. Love is funny like that. Most of us are good people who hate to see suffering. How many parents have sick children and say, "I wish I it was me instead?" It's no different in most loving relationships. We all know suffering is life. We all suffer many times in our lives, many times short term, but many times in the long term. Realizing the suffering is there and is ours to learn from can be a long painful process but it is part of our journey. It's can be a positive learning experience or a negative one. You choose. It's all in how we decide to handle it d no one else. What's your choice? I know mine!

I gotta go there's a puzzle waiting for me.

God Bless!

Dianne

Chronic Whirlwind

I had an appointment with my Rheumatologist this week. It seemed quite senseless and I told him so when he walked in the room. The prednisone I am on for my breathing issues has miraculous affects on my autoimmune disease. High doses of steroids suppress the immune system and the immune system stops attacking your body. Whatever that means, to me it means less pain, that's all I know. My pain has been very well controlled this week and sure feels good. The best part is no pain at night which makes sleep somewhat easier even with the steroids on board which can make you hyper and not able to sleep. I guess I'm somewhat fortunate with that side effect leaving me alone.

I had my list of written questions ready for my Rheumatologist when he walked in the room. If I don't write them down I forget most of them. In between appointments I always take notes on my phone of any new or worsening symptoms. If I don't keep track of changes I forget what went on in the few months since my last visit. I have new and worsening arthritis that I needed to talk to him about. I am always amazed at his knowledge as to what is going on with me. I ask him a question and he always knows what is causing the problem. Its nice to have such a knowledgeable doctor who is able to figure everything out without batting an eye. His explanations always make sense because they are real world terms and not medical terms. So here we go. I have been having more issues with my jaw and he said the arthritis is in there now. I told him I didn't want it and he smiled and smirked and said, "I can't change that." I told him, "But you're the miracle worker." We both laughed. We have to keep laughing. We moved onto the right foot. The big toe has been swollen and painful for some time now and I was not thinking arthritis but guess what? Yup. My toes are going numb and it is affecting the nerve at the base which is causing the numbness, pain, and swelling. He explained it as the arthritis causes swelling and the body tries to fix it which in turn causes collagen to buildup around the toe that pinches the nerve. Makes perfect sense. Of course my next question, "So it will get better over time?" Wishfull thinking as usual. Answer, "Nope."  Foot doc, steroid shots, possible surgery to clean it out. Ughhh, not what I wanted to hear at all but it is what it is. When you are chronically ill you almost never hear what you want to hear. Sigh. Next, dry eyes are worse which is from the sjogrens and the fact that the punctal plugs that I had in my tear ducts fell out so the dryness is bad again. I need to go back to the opthamologist and have new plugs put back in again. This is another big decision because I can have the kind I had in before knowing that they will fall out or I can have permanent ones put in. I guess I will see what the opthamologist suggest. Then there are my teeth that continue to give me one problem after another but I didn't discuss this with my Rheume because doctors don't deal with teeth issues. Sjogrens also attacks your teeth because your mouth is dried out. No taste buds, tooth decay, etc. it never ends. 

This probably doesn't seem like much to the real world but when you never feel well and it never ends it is extremely stressful. I want to throw it all away and forget it but I can't. I must deal. When I look at the big picture knowing I need appointments with and opthamologist, podiatrist, dentist, not to mention the routine appointments with the endocrinologist, pulmonologist, and rheumatologist it gets very frustrating and overwhelming. Not to mention the stress of the expense and the fact that I don't work. It can eat me alive at times. When I allow my head to get too out of control over it all I have pull back and break it into manageable segments. One issue at a time. I have to figure out what problem needs to be addressed first. What is giving me the most problem at this certain moment? It isn't easy to discifer this when they all feel pretty equal on my problem meter. It's strange when you have one thing after another how no matter how many issues you have your brain is able to put them in a corner and tell you none of them are a big deal. I tell myself all the time to forget about it but it isn't that simple. I wait and wait until I am suffering in the worst way possible before I call the doctor. Like it's all going to magically disappear while I struggle to ignore it. Sadly it doesn't go away as things continue to pile on top of one another. I always wonder if it will ever end. The walls might be crashing in around me but I must keep the control and stay in the drivers seat. When I get down and out I pull myself back together because I realize no one else is going to do it for me. Writing this makes me realize I will start with the simple fix and move on from there. Today I'll call the opthamologist and get that ball rolling. When that is done I'll regroup and decide what issue needs to be taken care of. Breaking it down makes it much more doable than when I look at the big picture. Breaking it down makes me realize I can do this and I will. I hope this helps you realize you can do it too. Press on my friends.

God Bless!

Dianne

Zebra/Round Three

I know I have written about this new chapter in my life but to tie this blog together it's worth repeating. Last December I had my first breathing test and found out why I have been experiencing so many breathing issues over the past few years, more like five. The problems had progressed to the degree that I knew I had to get to the bottom of what was going on, not that I hadn't tried in the past. I have told a few doctors in the past but as usual when you experience one thing after another you get blown off as if you are fine even when you know you aren't. A few years back I finally found a primary doctor who understands the zebra mentality and she ordered a breathing test. The results came in as a combined pattern of asthma and copd. I must be honest I never in a million years expected that. I knew something was wrong but I guess I never went beyond knowing something was wrong and to what it could be. I think when you are sick with one thing after another your brain learns to put new things in the corner. Maybe, just maybe, if you don't think about it too much it will be nothing and go away. Funny part is by now I should know it doesn't magically disappear. My brain still can't comprehend that chronically ill me is ongoing forever whether I accept it or not.

When I became sick years ago the more research I did on being chronically ill  I learned a strange term for people like me. Zebra. "When you hear hoof prints think horses not zebras." This is a term taught to medical students. In medicine zebra is used as a term for rare diseases. Doctors are taught to look for the simplest answers, horses, but sometimes it goes much deeper, zebras. Sometimes it isn't all cut and dry. Sometimes it takes time, time to diagnose and time to treat illnesses. One size doesn't fit all in many cases. I'm pretty sure,at least from my experiences, that doctors do not like zebras. Doctors are taught to make us better and when that doesn't happen it has to be frustrating for them. I get it. I really do. But I'm sure that is why so many doctors see my history and want to bolt out of the room. Happily I can finally say that isn't happening anymore. I have an awesome team of specialist that are bringing back my faith in doctors. Don't get me wrong I have had a few good ones in the past, emphasis on few, but now I can say all of my doctors are top notch. Believe me I know a good doctor from a from a not so good Doctor. I truly believe my luck with doctors changed when I switched to the Spectrum Health System. I am thankful beyond words and I tell them how much I appreciate them working with this zebra every time I see them. Having a doctor believe you is half the battle when you are chronically ill, proof in my lung diagnosis.

Yesterday I went back to my pulmonologist for what was suppose to be a four month recheck and ended up being a two month recheck up because I finally broke down and called last Friday. I was tired  of feeling like I wasn't getting any better and had a few new symptoms I needed to talk to him about. He wanted to see me because of my contacting him. I had another breathing test to compare it to the one I had last December. When I saw Dr. Koets after the test for the results I asked him if the test was worse and he said it hadn't changed from last time. In fact the numbers were exactly the same. Then he told me the chances of that happening are almost unheard of. I have been on treatment for four months and nothing has changed? We discussed the new symptoms, he checked me out, took his notes, and said with a smirk on his face, You are a tough case to figure out." I told him, "I know I am." In my head I was really thinking, 'He gets me!' I'm not sure but maybe some people would take offense to a comment but for me it brought validation. I live in a world where I know people think it can't be real that I am as sick as I am. Comments or smart remarks from people in the past about their doubts stay fresh in my head but the reality is they have no clue. Hearing a doctor say it like it is, for me, is like a dream come true. It helps me to feel a comfort in knowing he wants to help me. A simple comment like his helps the zebra mentality I have every time I go to the doctor bring me into the real world of being a horse like everyone else. If that makes any sense. The new line of defense for two weeks is prednisone. We are hoping this will open up my airways and help me breath better. If it works he said there are other inhalers we can add to my current treatment. If not we will go from there. I am hoping and praying this works. I'm sure he is too. This is the third round of steroids I have been on since February which kind of scares me but not breathing is much scarier and at this point I am willing to try anything. What is a zebra suppose to do? I trust my doctors fully and I will follow their treatments to a tee hoping for the relief I deserve. The best part about steroids is that it takes away most of my arthritis pain and gives me energy. Steroids aren't good for you but the benefits are wonderful for a chronic. I really wish they weren't so bad for you because they make life doable. I feel like I want to do things because less pain means less fatigue. I will enjoy the next two weeks of unexpected relief and go from there.

Round three on steroids begins. Let the games begin!

God Bless!

Dianne

The Hardest Part of Being Ill

Granted dealing with chronic illness is something you get use to. What a horrible thing to say in only a few words but sadly it true. In some odd sort of way it becomes a way of life, a way you don't want, but your way of life. Dealing with the symptoms becomes second nature. The worst part is dealing with all the planning and wondering when it comes to illness. This weekend our son graduated from Pharmacy school so we drove back and forth to Ann Arbor twice. I tried not to think about riding in the car too much and decided I was going to go with the flow, after all how bad could it be? A two and a half hour rife four times in twelve hours seemed doable, and it was, except for the unexpected side effects. Before the trip I kept the thoughts of the price I would pay tucked in the back of my mind. I have said it many times before that when you are chronically ill and make plans you always have to out weigh the good and the bad of everything you plan, from a shopping trip to your sons graduation. It is the constant battle that goes on in your own private suffering. I did well with the ride and have always loved road trips because you are confined to the vehicle. I love talking about anything and everything when I ride in the car. Rich and I don't get tons of time together so when I get him trapped in the car, alone, muahhhh, I take total advance. Poor guy. I thought I was doing well physically until I got home from each trip and noticed ankles and feet the size of large sausages hanging in a smoke house. The longer I was home the pain set in and the burning wasn't any better. I lathered up with the aspercreme, one of my best friends, and kept my feet up as much as possible. It feels somewhat better and was worth all the pain to watch our son become a doctor. Proud moments my chronic illness will never take away from me. It can rob me of my health and cause me pain but it can never tear me away from any monumental moments with the people I adore most in life. 

I feel, at times, like the chronic illness wants me to believe that it is the boss and it's odd how the illness can become an actual voice in my head. The arguments I have with it can be exhausting. The words I say to it I am unable to write here. Even though it is true that the chronic illness controls a lot I will never fully allow it to be in the drivers seat. I will continue to pay the price and prove to it that I win, as I did this weekend. This weekend proves to me that I am still normal and that there is so much life out there. I realized it after the graduation as I we walked to the restaurant for dinner. There was so much life on the streets as we walked. Passing all the people who have normal lives wondering how it must be to do all the normal things the rest of the world does. Oddly I didn't feel jealous or sad for myself but happy for every one I passed by or saw in the distance. It made me happy they didn't have to always be one step ahead of their illness. Happy they'd could enjoy the city life they all take for granted. The hardest part for me is knowing I am different but still looking like everyone else on the outside, at least to everyone else. Every time I look in the mirror I wonder who the person is looking back at me. I go as fast as I can getting my hair done and doing my makeup because looking at myself is painful. It makes me remember who I was and the dream I have of becoming her again. I'll never lose that hope no matter how bad this is. I'm sure my emotions are running high because I had to make an unexpected appointment with my polmunologist because of symptoms and when I have doctor appointment it's very hard on me emotionally. It's another one of the hardest parts of illness. I have to fight the urge to let the illness win but before seeing doctors I still worry.  I've learned even though the illness won't win its still ok to admit it isn't easy. I've learned I'm in charge but that doesn't mean the unknown of the future isn't a little scary. I've learned I'm stronger than I ever thought possible while at the same time knowing I'm a little weaker than I ever thought I could be. I've learned that sometimes some of the hardest parts of being ill become the parts that make me the strongest and for that I am grateful.

God Bless!

Dianne

You Can't Always Get What You Want

I remember when my son use to tell me how lucky I was because I grew up with the greatest music ever. I must agree. The late seventies and early eighties had some of the greatest bands as far as I am concerned although my love of music helped me through many years even before that. These days most of the music I listen to is the seventies and eighties because I am not a fan of much of the crap written these days. I was riding in the car today listening to wlav the radio station we listened to back then. You have to take yourself back to that time and realize music was delivered by either records, 8 track tapes, or the radio. We didn't have many choices like kids do today for our listening pleasure. We didn't know the difference and made the best of what we had. Good times I'll never forget we're sprung from so many songs. 

Today a song came on from a group that wasn't my favorite but there were a few songs they sang that I liked one of them being the one blasting through the speakers as I drove to my swimming class. You can't always get what you want by the Rolling Stones. I listened and smirked as I always do listening to lav because almost every song reminds me of a moment in time or brings back a memory of someone I laughed with. We all know how those high school years were, no stresses except worrying about getting homework done and what everyone was doing that night. 

The song was playing and I began to drift off in my head when they sang, you can't always get what you want, you can try sometime you just might find, you get what you need. I'm sure I was still smiling until I started thinking about how this applied to my chronic illness. When it comes to chronic illness you never get what you want, mostly you get what you don't want. I thought about what I would want. I thought to myself, just to be normal enough to have a real life. Just a week or ten with no pain. My mind wondered some more but then I thought about the fact that I could have no chronic illness but have a really crappy life. I feel fortunate for my life even with the chronic illness. If I was healthy maybe I would have a job I hated or a husband who was a total jerk. Luckily for me I only deal with the illness part. Even after all these years the struggle of illness is so raw and real. I've had a rough few months and I am trying to keep my head above water about it. You know the saying, If it isn't one thing it's another? That's how the past weeks have been for me. It was really beginning to drag me down. Last week I made the decision to stop allowing it to mess with my head so much. When I felt down I did something. Did it make it all go away? No, but it distracted my head from the chronic illness despair. The whole time that song played as I drove today I day dreamed until it was done. I realized I can't always get what I want but I do always have what I need. I have the best circumstances possible while dealing with all of this and I guess that's what I need. It seems so much easier writing this as I had a better day today, not sure how this would have came out had I written it last week. I'm going to carry that song in my head for the next few days. You can't always get what you want, you can't always get what you want, but if you try sometime you just might find, you just might find, you get what you need, oh ya!, and I will know that is enough.

God Bless!

Dianne

You Know You're A Sicko When...

You know you're a sicko when...you have no idea what you are doing.

Seriously, I am so confused when it comes to my asthma/copd diagnosis. It's all so new and it messes with my head to the point of where it may explode. Frustrating and stressful both at the same time. I know that's how it is for everyone dealing with chronic illness but when a new diagnosis hits it take a lot of time to figure it all out. I've learned to live with the other illnesses I deal with because most of them I have been around for years but this breathing stuff confuses me. The biggest confusion for me is when to call the doctor. I know they say when in doubt call but when you call too much it sets you up and puts you in the category of, "Oh it's her again." I know the doctors I have now are not like that but past experience has set me up for this way of thinking. Sad. I also believe the longer you are ill you avoid the call even more not only because of the labels, made up in your head, but because the last thing you want to deal with is another thing. You know how we humans think, if you avoid it then it isn't happening. The past few nights have been rough with my breathing. There is nothing worse than waking up wheezing, rattling, crushing headaches and feeling like there is a ten pound boulder sitting on the middle of your chest. 

Thank God for inhalers. Today I had to clean them, hence the picture, which hit me with the reality that this IS really happening and IS something I'm going to have to deal with for the rest of my life whether I want to or not. I also looked at my three inhalers next to each other and thought I have to accept this. The reality of the three inhalers, one on my nightstand, one in my purse, and one in my sunroom is real. I can't run from it even though I want to. Learning that every time I have to do anything physical I need to puff. Learning that when I wake up in the middle of the night and am having a hard time breathing, puff. Learning that some days I need the extra puff to make it through is ok. I try to put it off when I have an attack because if I puff I'm giving into the reality of this new diagnosis. Looking at those inhalers after I cleaned them helped me realize I must accept that it is ok. The acceptance that the fatigue is ok and it is ok to give into it. The acceptance that it's ok to call the doctor even if it is to just let them know what is going on. Ok that's a lie I'll probably give it another week because when you are chronically ill you always believe that tomorrow will be better. I think that is called hope.

You know you're a sicko when...you become strong enough to accept all that is happening to you and learning it's ok to be where you are. Trying not to look back at who you use to be but learning to love and embrace who you are now, from this day forward. Easier said than done but doable. 

We aren't just chronically ill we are chronically fabulous! We can't allow being ill to eat us alive. Keep up the good fight!

God Bless! 

Dianne