be kind

Last week was a whirlwind. No matter how many times I clicked my sensibly stable, yet really cute bright pink Sketchers, I was still in a doctor’s office, in traffic going to or coming from a doctor’s office or waiting for tests. Glad that week is over. I have another one today plus whatever that one brings. FIngers crossed for a light week.

It always amazes me in my travels that I meet people in similar situations as myself. I don’t even know how the conversations come up sometimes. At the pharmacy, the sweet woman I usually deal with has a sister fighting breast cancer and I found out that she herself is a cancer survivor. At my younger son’s school, I met a woman who had been through so many surgeries I think she lost count. In the line at the grocery store, someone saw my tube and asked me about it. She did not have a tube herself, but was surely fighting her own battles. Please keep in mind when dealing with your friends, family, coworkers, strangers…everyone has a battle they are fighting. It may be financial, medical, marital, family related….be kind. Sometimes, your kind word could be THE words to make a difference in that person’s day or life even.

Here is what my week looked like last week. My pulm tests showed slight decrease in function. This seems to be the trend in my PFTs, always on the decline. As for my annoying cough, she thinks that my Sjogren’s is progressing further down my trach and the dryness is causing the incessant cough. I am now on an inhaled steroid to see if that helps. Personally, I am not seeing any difference after a week. The next step is to try a salagen. This is a medication that causes your body to produce saliva. I know my eyes, mouth and now trach are dry, but the thought of this particular medication makes me want to gag. Especially since the doctor says that some patients feel like they are drowning when they take it. BLAHHH….Gross! That’s the way I’ll go. After all the BS I’ve dealt with, I’ll drown in my own (wo)man made saliva. What a epitaph that would be.

Here lies Joey Lynn,

Full of Wit,

Too bad she went,

and drowned in her own spit.

I kid. Let’s hope that’s doesn’t happen.

I saw the Sleep specialist who was also a pulmonologist as well. I liked him very much, despite the fact that after gathering all of the necessary info about me, he looked at me and smiled and simply said “You’re weird”. I knew I like him right then. He was honest. He explained that my symptoms are opposite of most people’s symptoms and that I am more complex. Ha! Story of my life since I met Scleroderma. Turns out during REM sleep my pulse ox drops to the low 50s…not good. So, now, I sleep on oxygen. It seems to be helping a lot and the amazing thing, the cough stops when the oxygen is on. Good news right! I am calling this portion of my blog – the oxygen tank is half full.

I am still struggling with not eating “real food”. I am torturing myself trying to eat, knowing the end result will be my face in the toilet bowl. It is depressing, exhausting and a painful reminder of the way this disease is slowly stealing my life from me, one freedom, one organ at a time. I am a strong person, hard headed. I don’t like to give up. And in this case, giving up is the right thing and the only thing to do. But, it is a struggle for me. I want to believe what everyone says – “You look great”. I want to believe that I am healthy. I want to dress like a normal person, hiding my feeding tubes, covering the imperfections on my face and hiding the broken blood vessels from all the vomiting. I want to still fit in. I don’t want to be the tired one that can’t walk far distances. I don’t want to embarrass my family with my canes or walkers or worse yet, my wheelchair. I want to be the old me. The one that went at 150 miles per hour all day, every day, not the one that moves at a snail’s speed and even then must break for naps throughout the day. The naps are more frequent than they were before. And much more critical to my day. I can feel myself slowing down and I don’t want to. Each day, I lose another piece of “me”. It is not obvious to most, I hide it well. But, if you have known me for a long time, and you look real close, you will see through the make up and the smile, and the “I’m Fine’s”, you will see what is left of the me you used to know.

Next week is the big Scleroderma walk in Philadelphia, The Stepping Out to Cure Scleroderma walk is on Sunday, October 4th at Lloyd Hall on Boathouse Row in Philadelphia. You can register online if you would like to walk with me, my family and my friends. If you are not able to walk with us, but would like to donate, you can do that on the website as well. The link is http://www.scleroderma.org/goto/joeybarlow Thanks in advance for any help!

So if you are fighting the Scleroderma fight, or any other fight, you are not alone in your battle. My prayers are with you.

Woohoo! My life is a blog!