Wednesday, January 20, 2016

Just When I Think I'm There I'm not

Year of diagnosis. This has been the year for me. In May I finally got my true diagnosis from the Rheumatologist. I have said this before as I've had years of waiting, being told its this, it's that, but never really having the 100% diagnosis. The relief that comes in the knowing gives you an odd sort of peace. I've said it before and I will say it until I die, "A person knows when something is wrong with them." Listening to doctors tell you that you are fine or overweight or need to exercise gets old as you are living in hell. Hence the reason diagnosis brings relief. I thought my diagnosis list was already long enough even before the true diagnosis. If you saw my list you would have to believe this woman is nuts. How can one person suffer with all of this? Seeing a new doc is almost humiliating. If and when I have appointments with a new doctor I have to chuckle to myself because I would love to see their faces when they see my list of diagnosis'. I mentally see their faces and hear their subconscious voices thinking it sure can't be a reality that someone deals with all of this. It's making me laugh outloud right now. I'm sure they are picturing some nut job that looks half dead and is depressed only to walk in the room and see my smiling face, hair, makeup, dressed nice, and my positive attitude. I can tell the way they look at me they wonder if it can all be true. Well doc I assure you, "It is!" Then I open my mouth and I'm pretty sure I blow them away. Still laughing!

I always have to chuckle to myself when I hear people say they don't go to the doctor because all doctors do is find things wrong with you. I believe most people say this because they want to believe they are exempt from illness. They think illness is something happens to everyone else and not them. I get that, I really do, especially if you feel fine. But what if you don't feel fine? If I and others didn't go to the doctor and didn't find out why we dont feel well we would continue to suffer in our misery. When it comes to some diseases that progress over time a person needs to find out what is going on in order to treat the disease and hopefully slow the disease progression down. It is all a choice and we all must make decisions on that treatment on our own. What works for one may not work for another. I know for me the drug I take works. It doesn't take it all away but it helps me to do better than if I don't take them. I've tried both and I know the effects. It is worth it for me but may not be for someone else. We all must decide.

Breathing issues hit me hard this year. I have had shortness of breath for quite a few years now but this last year it has progressed. I've noticed any fast moving caused me to be grasping for air to a point of having to stop and allow my breathing to catch up. Cold air that sends me into fits and I love being outside in the winter. I've known for some time something hasn't been right and knew I needed to find out what was going on so I mentioned it to my primary doctor. I finally have a doctor who listens to me and take me serious instead of blowing it off as nothing as other doctors in the past have. She sent me for the lung function testing and when I was there the lady who did it said it looked like I had asthma. A simple diagnosis that an inhaler would help. I left with that, finally a diagnosis, feeling. The just asthma diagnosis became a little more serious after the pulmonologist looked at the test. Asthma and Copd. Things just got real. How can this be possible? I smoked in my younger years but never a ton and for a few short years. I'm wondering abou working in the salon with all the hairspray and chemicals floating in the air for almost twenty years may have had an impact. I'm trying not to find the answer because that is what can make you crazy. I have asthma and Copd now I need to learn what to do in order to live with this diagnosis. Period. It is what it is no matter what caused it.  I am happy to say my doctor started me on a couple of inhalers and thing are improving. She also set me up with the pulmonologist to see what he/she has to say. We will go from there.

Once I give in and give up life is over, this is not an option. My head is trying to wrap itself around this diagnosis since it is a disease that doesn't get better. Treatments help it from getting worse so I am hopeful it stays at this stage. I am still exercising and going outside I am learning the precautions I need to take before I do so like doing my inhaler, wearing a scarf over my mouth, slowing down if I need to. Living! Not giving up. Pushing on. Accepting or at least trying to. In and out of acceptance. I believe that is a constant when your world sort of crumbles. The other day I realized I don't cry anymore like I use to about being chronically ill so I guess that is some sort of acceptance. Either acceptance or its because my tears are dried up from the Sjogrens, one of the two. Ha! Seriously though it's like the sadness I use to experience has changed. I'm still sad I can't live a real life but all the physical symptoms have become a way of life now. It got easier when I decided this is how it is going to be for me. I've learned to be okay with it because I need my energy to physically make it through many days and to fight the emotional stress. Fighting all the dynamics of disease is hard work that can suck precious energy out of me faster than the symptoms can. That being said there are still days I become angry and days I try to find an answer but on those days I find something to do that changes that kind of mind torture. I usually try to do something productive even though my energy only allows short spurts of time to do so. I always work hard to pat myself on the back for what I accomplished instead of beating myself up for what I didn't. A start is better than doing nothing. I wake up everyday with a head list of things I'm going to get done. I never finish the list but I do something and that is what is important. Push on and hope are the two things I tell myself everyday over and over. I hope you find what works for you as you work towards your acceptance!

God Bless!