A myositis update...

Today you get a myositis update because I saw Dr. Cohen.
First...I started with cough on Friday morning. It didn't really concern me because Bill has had a cough for about a week and Jacob has been coughing on and off as well. Saturday and Sunday coughing a little more but again this has been common in our household the past week or so.
Last night and this morning it become a bit worrisome. I coughed most of the night and this morning when I got up and got in the shower I coughed harder than I have probably ever coughed in my life. I remember what I had learned in my pulmonary therapy. Sit with your feet on the floor and your back against the back of a chair. Roll your head forward, relax your shoulders and keep your knees rollled outward. Rest your arms and hands on your thighs, with your palms facing up or rest your hands on your stomach. You can also pull a chair close to a table. Sit on the chair with your feet on the floor and place a pillow on the table. Fold and rest your arms on the pillow, then lay your head on your arms.
Obviously at 5:45 this morning in the shower I did not have the book in front of me to reference so I just did what I thought I remembered and sat on the floor of the shower and put my head on my knees and tried to stay calm. Eventually I stopped coughing. This morning event scared me enough to pull out the reference guide I had received and as I reviewed the information I decided that I should call the doctor. Under the section "When to call the doctor" I had experienced four of the twelve bullet points.
By noon I had an inhaler which I questioned. My lung issue is "restrictive" versus "obstructive" so it was my understanding that an inhaler wouldn't do me any good. I was correct and complimented on my questioning of this approach. The doctor thinks that I may be experiencing bronchial spasms when I start coughing and the one puff, twice a day for two weeks might help me out.
In addition I need to treat the GIRD (reflux- which I still don't think I have because I don't have heartburn). No eating two hours before bed. Caffenine and alcohol in moderation. Take my medicine a half hour before eating breakfast and dinner (still I remember the morning pill and continue to forget the one before dinner). I think I will set an alarm on my cell phone.

OK...now that wasn't even the doctor's appointment I was going to tell you about.
Dr. Cohen's exam showed that the prednisone is helping some of the skin issues (mechanics hands, purple-ing around my eyes, etc..) and any sort of joint issue or pain but she is very concerned that I am still on 30 mg and not decreasing until the third week of July. She said that rheumatologists and pulmonagolist approach this differently. She is going to be in contact with Dr. Adl and discuss the change of treatment to cyclosporine (I think that's the name) versus prednisone. She would also like to see some tests done now at the half way mark...repeat Pulmonary Function Test and/or CT Scan to see if the prednisone is making any improvement on the inflammation. If it's not, it's time to do something else.
So...side effects of the new medicine include low white blood cell count which increases the chance for infection, thinning hair, nausea, kidney or liver disease, increase chances of lymphomas and bladder infection and cancer, to name a few.... You know with every medication they say that the doctor believes the reward is greater than the risk associated with the prescription. How does that make you feel?
I had lab work done. She ordered some new tests that will take a little longer to get the results.
When she has them and has had a chance to review them with Dr. Adl she will call me. I will then fill you in on the plan of action.
It certainly could have been a better day at the doctor...but it also could have been worse.
Let me end this with a great little story I got from my sister Vicki last night....it's called "God's Cake" and as many of you know I have cake creator in my house so I plan on thinking of this story ever time I smell a cake baking or have a giant bowl of frosting on the counter or an amazing cake creation sitting on my kitchen counter.

Well that's a bummer...I can't just copy and paste.
I will post "God's Cake" for you tomorrow as it is time to get the kitchen picked up and the kids up to bed. No more eating for me as I plan to be sleeping in the next two hours.
Thanks for checking in.
Kris