Sunday, August 28, 2016

Say It Isn't So

Last night I had a dream, well actually it was more like a nightmare. It started out as this whole summer has, hot and humid and pure hell, but ended better, at least for a minute.

I woke up this morning and it was so hot that the windows had dew on them. I could barely see outside. I instantly knew the humidity was high. Although I already knew it was high because this has been the case all summer long this year. I honestly didn't need to get out of bed to know it was humid because my breathing was already labored. Humidity and breathing problems do not mix well together. This summer has been murder for me and I'm sure others who suffer from lung disease. I feel like I have been stuck in the house for months because every time I try to go outside I can't breath. It's exhausting to say the least. I have to keep the air conditioning on sixty eight just to feel comfortable and able to get the air in my lungs that I need. This along with my inhalers to relieve the symptoms. Everyday I try not to use my rescue inhaler I feel like I'm grasping for air and there's a vice squeezing inside my chest, it is the worst feeling in the world not being able to breathe.

Turning back to my dream. I went to bed with the humidity still circulating through the house but oddly I woke up in the morning to winter. When I got out of bed and looked outside the next day there was snow on the ground. I was never so happy in all my life. I didn't have to use my inhaler which made me even happier, finally the relief I have been waiting for. I enjoyed the day and remember running to Rich when he woke up and saying, "Hon, look outside finally some cold weather!" Of course he was happy for me too. We had a good day and for some reason it was a Sunday just like today. The day was good and flew by. Time for bed again. I remember sleeping well but waking up in the morning and having problems breathing again. I got up and guess what? Windows steamed up and hot and humid with no more snow. Rich watched the weather and told me winter only lasted one day this year. I was devastated to say the least. I cried and said rather loudly, "SAY IT ISNT SO," in between the sobs. I told him to shot me and take me out of this misery. I can't do it anymore. That's all I can remember because that was when I woke up. 

The only meaning to this dream that I can think of is that I can't wait for cooler weather. While everyone else is out enjoying the summer I feel trapped. I watch my grandkids and can't go outside with them unless I'm in the shade and even then it is extremely hard. How do you explain illness to kids? I don't. I never let them, or anyone else for that matter, know how rough this is. Most everyone doesn't understand anyways or they just want to fix what can't be fixed. I do the best I can but its not easy. Then for the last three or more months I started losing my voice like a laringitis type thing. Talking has become very hard along with the shotrtness of breath and the coughing. I told my pulmonologist but he never gave me an answer so once again as usual I had to do my own research. I knew something wasn't right. A person knows even when the doctors don't want to listen. I came across information about the steroid inhalers causing thrush which is a yeast infection in your mouth. I looked at the back of my throat and sure enough I had it. I've had it before from prednisone but this time I knew the inhalers are causing it. I sent the doc another message and now I am being treated for that. It never ends. I wonder now is this something I'm going to have to deal with forever? I need my inhalers because breathing is sort of important so stopping those is not an option. Say it isn't so. I don't need another thing to deal with right now or anymore for that matter. I'm going to try to keep an open mind and believe this is a one time thing. 

I wish this whole nightmare would end. I wish it was just a dream and I would wake up and life could be normal. My normal will never be a normal, normal. Yes, I know we all have issues and I know we all suffer but my cup is full. I'm tired. I'm tired of always having to have such a heightened sense of awareness as to all that goes on in my body. This year has been rough to say the least. The worst part is when, one more thing happens, it tends to bring me down. Just when I think I'm doing good and can handle this hell another thing hits. "Say it isn't so," is usually my first reaction but then I must bring my head around and believe this too shall pass. I must live in this moment and not worry about what comes next. I'm trying. What more can I do? Life goes on whether it is a normal life or whatever this is. 

God Bless!


Tuesday, August 2, 2016

I Knew It Was Coming

You know how it is when you know something is coming even if it isn't going to happen for a matter of time? We all have those times in our lives. Getting engaged. Excitement and nerves all preparing for the big day. There's so much to do but you continue on with life in the days leading up to the actual day. Another perfect example is having a baby. All the excitement aside, somewhere in the back of your mind is the thought of the actual birth. The pain, and if it's your first baby, the dreaded pain and horror stories you hear from people who feel the need to tell you about their awful birth experience. You hear the story or stories and you become horrified at the fact that you are going to have to go through...that? Even though you are freaked out you push the thought of the birth to the back of your mind and continue to deal with the day to day living and preparations of having a baby. These examples could go on and on.

There are so many times a person with chronic illness faces these same issues. I have had one thought in my head like this ever since I became sick so long ago. A cure. You know, the thought that's always there that one day I wake up and it's all gone. No more illness and in an instant my life flips back to some sort of health normalcy. Honestly I can say I never felt well even as a child but at least I was better than this. I always felt tired and like I could never keep up with the other kids. Always the last one picked and absolutely hated anything physical in school, now years later it all makes sense. It's no different now and worse the biggest change is I didn't have the pain way back then like I do now. The thought in the back of my head, "If I could only go back to that." I'd be happy with those days and even just a little pain to be truthful. Life doesn't work like that though. We can't pick and choose the future and it's a fact we can never go back, so we push on. 
It has been quite a few months now that my inflammation has been giving me more problems. Feet, knee, back to name a few, the list can go on. This isn't the normal everyday pain I deal with it is the joints and the arthritis getting worse for some reason. My Rheumetologist and I have been discussing adding another DMARD, disease modifying antirheumtic drug, used for autoimmune arthritis, for quite a few months now. These are powerful drugs that calm down the immune system to keep it from attacking the joints. I am currently taking one but yesterday I saw him and with all the swollen joints we decided now is the time to add the new one we've been trying to put off. The wait and see approach isn't working as well as we hoped it would. The funny part is when I saw him about 3-4 months ago I was doing quite well without signs of inflammation. We were both encouraged until a month later when my knee wacked out on me. Then it seemed from there it was the balloon effect. One swollen joint lead to another and so forth. I had a couple of good weeks for me and then wham the past ten days things turned for the worst. Honestly I was glad, not glad because things got worse, glad because they were at their worse when I had an appointment. That is the crazy part of having an inflammatory disease. You can go see your Rheumetologist and be doing well and the next day or a week later something happens inside your body to set you off. I was glad this flare was in full swing when I saw him yesterday. As I have said many times before, you rack your brain trying to figure out what caused it. "What did I do different to bring on this change?" I can never find a clear cut answer to that question, ever. It just happens. I guess when your immune system hates you it takes charge whenever it wants to. I picture it sneering and chuckling and asking, "I wonder if she can handle this?" Well, guess what? "Yup I can so bring it on bitch!" My fight on the inside has become stronger than I ever thought possible even when I have to make decisions to add medications to help me live a somewhat normal life. Honestly I just don't care anymore. I care but in a different way. I use to make myself crazy arguing with this disease and taking the drugs but now it seems I am beginning to come to some sort of peace with it. Learning to take what it throws at me in stride. I truly believe it helps me 100% having a Rheumetologist that is on my side too. I just love him and it brings such a peace to me to have him. We also added a prescription NASAID. I took it years ago but we decided it was time to go back on that too so I am happy for that as I remember the relief I had from it. Worth the risks I guess. I just can't think about that side of it. For me I would rather live a life of less pain and less misery and take my chances. We all have to make that choice on our own.

I was thinking about all of this and the pull I feel about taking another drug, actually two, and it is odd this time how I feel ok about it. I use to get so upset about the drugs and in turn would almost get depressed about them but I have come to realize they are there to help me. Racking my brain I finally have that peace too that for me I would rather live with less pain and misery and take my chances with the drugs. We all have to make that choice for ourselves. I also know that having my son as my own personal pharmacist helps immensely. He has been such a help for me through all of us.

I was pondering on the new addition of drugs and, as usual, I had to put my twisted humor in there. Humor heals all you know, at least for me. I have some odd internal dialog with my disease today and on most days but today it was short and sweet and went like this:
Dear Inflammation, If you could only hit one joint at a time that'd be great. Sincerely, Dianne
Dear Dianne, I don't work that way so buck it up. Irritatingly yours, Inflammation
Yup that about sums it up in a nutshell. I have the hope these two new drugs help with the pain and since I have had the time to proces this change because I knew it was coming it makes it that much easier. Push on my friends!

God Bless!