News is news...

This morning I spoke to Dr. Cohen and the news is news. That's it. I could create a story and worry about what it might mean or could be, but really....why? It is only what it is until we know more and then again, it will only be what it is, no more and no less.
Not all of the lab results are back yet but the ones that are complete are mostly normal. There are two inflammation tests that are not normal but they are not way out of whack either. The tests we are still waiting on are antibody tests. They will show if there is another autoimmune disease that is jealous and wanting to start a fight with my myositis. That is fairly common among autoimmune diseases.

Dr Cohen did speak to a lung specialist about my situation and I have an appointment with Dr. Dima Adl on Monday morning at 10:30.

The doctors agree that there is definitely something going on in my lungs. It is not in the tubes but in the muscle/meat of the lungs. It could be the disease or it could be an insidious(sp?) infection which means rare or unusual or it could be something else. Dr. Cohen believes in the ability of Dr. Adl and is pleased that she will see me as soon as Monday. She told me to try and have a great weekend and to keep worry at bay. She will call me when any other results come in.

Stay tuned for more information and insights from your favorite myositis patient, of course, I am assuming you know no one else with it.

Love,
Kris

On second thought....

During my appointment on Tuesday, Dr.Cohen said she would call me when she had the results of all the tests and had had the opportunity to talk with the pulmonologist. I was fine with that. It seemed like a good idea to have all the information so that a plan could also be part of that discussion. Then a day passed. One out of the 5-7 days that I am expecting to wait. I want to know something, anything...one piece at a time will be just fine with me. I called the doctor and left a message yesterday afternoon saying just that. Hopefully I will hear something today. To help feed my head with knowledge and put things into perspective I did some google searching....don't do it. I should have listened to Bill when he said, "stay away from the internet today. The doctor will tell you everything you need to know."

Last night I took a long hot shower and was in bed by 9:30. At 12:30 I was awake because my hands were achy. I came downstairs (Bill was up decorating a cake and making cupcakes for a bake sale) took some advil and went back to bed. An hour later I was still laying there, wide awake so I got up and took my pillow to the couch downstairs and watched "American Idol"
3:00 AM passed, then 4:00 AM still awake.... 4:30 I went back upstairs to bed, turned off my alarm realizing perfectly well that sleeping or not sleeping I was not going to be able to get up and get to work at 8:00 AM. I did fall asleep sometime after 5:00 and I missed seeing the kids this morning before school. That makes for a lousy way to start a day. Their love and smiles and even the morning grumpiness that sometime shows it's face is all part of a wonderful way to start a day.
Today I missed it, tomorrow will be better.
Tomorrow will be better.

Here's the update on my test results...

Last week my doctor ordered two tests to be repeated…a pulmonary function test and a CT scan of my lungs/chest. The reasoning for the order is because I have had a persistent cough in the mornings and I have been experiencing shortness of breath. This is most noticeable when I cough or walk up or down the stairs.

Today when I was at the doctor she shared the results of the CT scan. At this point there have been significant changes in the progression of the interstitial lung disease. The conclusion actually reads as follows:
1) Significant interval progression in interstitial lung disease with bibasilar ground glass air space and interstitial changes as well as scattered areas of linear interstitial and ground glass air space opacity peripherally in both upper lobes as well as the right middle lobe. A component of superimposed aspiration pneumonitis would not be excluded in the lower lobes or the lingual where the areas of opacities are the most confluent. Clinical correlation is suggested.
2) No pleural effusion
3) No adenopathy.

Of course I don’t understand any of the above, do you?

What I do know is that Dr. Cohen ordered some additional tests to be run when they run my normal labs. There may be an overlapping disease which is common in autoimmune diseases.
She did not receive the written results from the pulmonologist but will likely have them this afternoon. The results themselves, without the professional interpretation, show a decrease in my lung capacity and function since the test I had a year or so ago.

Once she has the results from the lab and has talked with the other doctors she will get back in touch with me to make a recommendation (5-7 days) Although my skin looks good and my muscles are working well, my joints (especially in my hands and wrists) and my lungs indicate the disease (myositis) is active. She wants me to start up on prednisone again but agreed to let me wait on that until she has all the facts.

If you would, say a prayer for me that helps take the worry away, give answers to the doctors and restores my health, it would be greatly appreciated.
Last Wednesday in church we sang “Abide with Me” during communion. A gentleman who we worship with had just received a diagnosis of cancer and I could see him singing at the communion rail. I have been meaning to write him a note, letting him know I have been thinking of him and praying for him. Isn’t this a beautiful line from the hymn…”Ills have no weight and tears no bitterness….I triumph still if Thou abide with me!” It even has an exclamation point.
Those are comforting words when you are not feeling well and the exclamation point make me want to say/sing it with confidence.

Love you.
Kris

Update regarding my test of endurance

I was changing things up, working seven hour days instead of six hour days in hopes of getting the OK from my doctor next week to return to work full time. I worked four seven hour days and then two hours (still limited to 30 hours) in the first week. I worked two seven hour days the next week and that was it. I couldn't continue with that schedule. I guess I failed my test of endurance. I guess I am going to have to work my way into this. One seven hour day one week, then two seven hour days for awhile, add three when I am ready, etc.... It's going to take longer than I had hoped.

Tomorrow I am having a repeat pulimonary function test followed by a CT scan of my chest. This is being done to address the dry cough I have had for months as well as shortness of breath. Early in my disease I was diagnosed with interstatial lung disease. The lungs don't repair themselves but it is important to make sure they don't get any worse as well. I have base line pictures/tests for just about everything and that includes my lungs. More to follow on that in the days and weeks to come.

On a happier note, last week Tuesday we got a lot of snow. So much that Jake's after school program was cancelled. When he got off the school bus I was already dressed in my winter play clothes (long underwear, hat, scarf, gloves, etc...) and that is exactly what we did. We played in the snow. We played tag, made snow angels, wrestled, etc... When Emma got home from school the fun continued for another 15-20 minutes. This is an afternoon I won't soon forget and I really hope they don't either. When Jake got off the bus on Wednesday, Thursday and Friday he asked each afternoon if I could play again...I couldn't, that 45 minutes on Tuesday wiped me out for nearly the whole week. It's really sad for me to have to say no to something that's good for both of us and really fun for both of us. That is certainly a more difficult "endurance test" to fail. As I look at my goal and things to aspire too, being active with my family will have to take priority over returning to work full-time. Remind me of that if you see me going in the wrong direction.

Have a great day.
Kris

All is well...

All is well.
My hands no longer wake me up in the middle of the night. Only once since I took the prescribed remedy did that happen again. I am sleeping well. I have been struggling with a morning cough that is worrisome and although my wrists do not wake me up in the middle of the night, I know that they are not right. They crackle and ache throughout the day. Somedays it's worse than others. These are things I will mention to the doctor when I see her in a couple of weeks.

This week I am going to give myself a test of endurance. I am still limited by my physician to a maximum of 30 hours per week and no more than a seven hour day. I have been working six hour days pretty consistantly and this week I am going to bump it up to seven and see how I do. I have a doctors appointment coming up on February 23rd and I would like to be able to ask the doctor to let me return to work full time.
Don't get me wrong. I really enjoy 30 hours a week. It is a nice balance of being able to be at work and be at home but what continues to loom over me is "disability". I'd like to be done with that.
To be done with that, however, does mean that I need to return to work full time.
What this time has taught me though....

1. My children and my husband have to know that they are more important than my job. I may say it to them daily but it will be my actions that speak louder than words.
2. It is important to make time to volunteer in school and at church where my kids can see that I think school, and their teachers, church and our faith are important.
3. Planning and communicating the plan makes life easier on everyone. Meals, activities, meetings, etc...
4. Too much is just that...too much. Pick your battles. Chose what is most important. Give back in a way that feels right and honest.
5. Smile. Life is full of blessings but you must have your eyes and your heart open to see them.

Please pray that I am physically able to return to work full time. Please pray that I don't lose balance when that happens. Please pray that the cough and the wrists are nothing to worry about and "this too shall pass".

Thanks for checking in.

Kris

Update on my hands....

In the last post I shared with you the pain in my hands. Well, as you know I did not get the cortisone shots and I did see Dr. Sweeney. He prescribed a remedy that I am suppose to take for the next 3-5 days. The first night there was no change. I still woke up with a tremendous pain in my hand. The second night....sweet dreams, no pain. I actually woke up at 4:00 and wondered if I had really slept through the night.
We'll see what happens tonight and I will let you know.

I started my day this morning with this lovely note in my work "inbox". I hope you enjoy it as much as I did.

May today there be peace within.

May you trust that you are exactly where you are meant to be.

May you not forget the infinite possibilities that are born of faith in yourself and others.

May you use the gifts that you have received, and pass on the love that has been given to you.

May you be content with yourself just the way you are.

Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise, and love.

It is there for each, and every one of us.