Wednesday, April 27, 2016

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!


Monday, April 25, 2016

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!


Tuesday, April 19, 2016

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!


Wednesday, April 6, 2016

You Know You're A Sicko When...

You know you're a sicko 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 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!