I received my first t-shirt order form and walk form. I will keep you update as they come in. It's exciting.
4 t-shirts
4 walkers
Yeah!
Tuesday, June 22, 2010
Wednesday, June 16, 2010
another medical update....
Today I had three appointments related to my health.
First Appointment:
Three times each week I meet with Pulmonary Therapist for an hour and a half. During this time I walk on a treadmill, use a "Cat's Eye" machine for my arms, a sitting eliptical machine, a stationary bike and hand weights. Midway through each activity my oxygen levels are recorded as well as my breathing rate monitored. I am doing great.
The other day I was walking on a treadmill next to Margarite. She also has Interstitial Lung Disease. She is older than I am. She is on a lung transplant list and everytime her cellphone rings I wonder if I am going to be there when she gets the call that it's her turn. Margarite can't eat much. She is losing weight. It takes her a long time to chew her food because it take up a lot of oxygen to do that and with the goal of getting new lungs, this is working against her.
I am gaining weight. I'm not happy about it but walking on the treadmill next to Margarite makes me realize that we all have our obstacles to deal with. We want what the other has, but only if we can pick and chose.
We can't pick and chose! We get the cards and we get to play them. That's life.
My next appointment was with my Dr. Adl, my lung specialist. I received a call earlier this week that after talking with Dr. Cohen (my rheumatologist) that she wanted to see me. Dr. Cohen is worried that my treatment with prednisone is too long and maybe we should try another treatment. After meeting with Dr. Adl, I was assured that "clinically evaluation" would indiciate that there is improvement in the sound of my lungs. Only the Pulmonary Function Test or CT Scan can offer proof of this and that is scheduled for July 26th. Dr. Adl did offer great words of encouragement and told me that she is really impressed with her interactions with Dr.Cohen. I have decided to still hire a "Captain of my ship" and have made proactive calls to an internal medicine doctor to fill this role.
Third appointment was at "Slow Poke" in Grafton. Here I met with a woman who works with people to help create a balance in health through nutrition. I learned a lot, bought a few new things and hope that I can make smarter choices for fueling my body and get my family on the right track for the future. This will be a slow process but one well worth it.
I have to go to bed. It's 12:45 and I want to be working by 7:30AM.
Good night my friends.
Kris B
First Appointment:
Three times each week I meet with Pulmonary Therapist for an hour and a half. During this time I walk on a treadmill, use a "Cat's Eye" machine for my arms, a sitting eliptical machine, a stationary bike and hand weights. Midway through each activity my oxygen levels are recorded as well as my breathing rate monitored. I am doing great.
The other day I was walking on a treadmill next to Margarite. She also has Interstitial Lung Disease. She is older than I am. She is on a lung transplant list and everytime her cellphone rings I wonder if I am going to be there when she gets the call that it's her turn. Margarite can't eat much. She is losing weight. It takes her a long time to chew her food because it take up a lot of oxygen to do that and with the goal of getting new lungs, this is working against her.
I am gaining weight. I'm not happy about it but walking on the treadmill next to Margarite makes me realize that we all have our obstacles to deal with. We want what the other has, but only if we can pick and chose.
We can't pick and chose! We get the cards and we get to play them. That's life.
My next appointment was with my Dr. Adl, my lung specialist. I received a call earlier this week that after talking with Dr. Cohen (my rheumatologist) that she wanted to see me. Dr. Cohen is worried that my treatment with prednisone is too long and maybe we should try another treatment. After meeting with Dr. Adl, I was assured that "clinically evaluation" would indiciate that there is improvement in the sound of my lungs. Only the Pulmonary Function Test or CT Scan can offer proof of this and that is scheduled for July 26th. Dr. Adl did offer great words of encouragement and told me that she is really impressed with her interactions with Dr.Cohen. I have decided to still hire a "Captain of my ship" and have made proactive calls to an internal medicine doctor to fill this role.
Third appointment was at "Slow Poke" in Grafton. Here I met with a woman who works with people to help create a balance in health through nutrition. I learned a lot, bought a few new things and hope that I can make smarter choices for fueling my body and get my family on the right track for the future. This will be a slow process but one well worth it.
I have to go to bed. It's 12:45 and I want to be working by 7:30AM.
Good night my friends.
Kris B
Monday, June 7, 2010
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
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
Sunday, June 6, 2010
Eat, Drink and Be Mindful...
Eat, Drink and Be Mindful....I'm going to try it out.
Right now that means I am not going to eat the ice cream sandwich that is calling my name.
Instead I am going to get my stuff together and take Emma and Alexandra to the pool.
The ice cream sandwich will be there if I still want it when we get home.
Right now that means I am not going to eat the ice cream sandwich that is calling my name.
Instead I am going to get my stuff together and take Emma and Alexandra to the pool.
The ice cream sandwich will be there if I still want it when we get home.
Thursday, June 3, 2010
Just like that....
Just like that...with tears in my eyes I put my last post out there.
Then I went to my sister's new blog and look what wisdom/words I found there.
Her i-pod is engraved on the back.
It says " I can do all things through Christ who strengthens me".
Check...
Words to today's favorite running song: "Cause there may be times when you think you lost your mind and the steps you're taking leave you three, four steps behind. But the road you're walking might be long sometimes, you just keep on stepping and you will be just fine."
Check...
I'm not crying anymore.
Feeling a little better...
Thanks Roo.
Then I went to my sister's new blog and look what wisdom/words I found there.
Her i-pod is engraved on the back.
It says " I can do all things through Christ who strengthens me".
Check...
Words to today's favorite running song: "Cause there may be times when you think you lost your mind and the steps you're taking leave you three, four steps behind. But the road you're walking might be long sometimes, you just keep on stepping and you will be just fine."
Check...
I'm not crying anymore.
Feeling a little better...
Thanks Roo.
It's been rough...
The past few days have been rough. Beginning Saturday I started having increase fatigue and achiness in my arms, neck and back. Where did it come from, that is the question?
Could it have started from adding a second set of repetitions on Friday afternoon during my pulmonary therapy?
Could it be because I have not been sleeping well?
Could it be from the trip to Baraboo and back? I'm not usually the driver and round trip that was four hours?
It's been rough. In addition to the increase in aches and pain and problematic sleeping or not sleeping, I have been crabby, snapping at everything and everyone. OK, not everyone, just those I love the most and sleep under the same roof with. Just those three people that mean more to me than anything else in this world. Why am I hurting them with my terrible mood?
Could it be the prednisone?
Could it be because I am losing my battle with sweets and food in general?
It is as if bad is attracting bad and the more bad there is the harder it is to escape from it.
I know this too shall pass. I just wish I knew when.
Dear God...please help me see my cup overflowing. Help me say yes to the ones I love and the things that make me happy. Help me say no to the things that can be handled by others.
Help me get through these days and these tears stronger for it.
This is my life on prednisone...up and down. Crabby and stressed and tired and tearful and angry and eating even though I am not hungry. I am sick. It will get better.
Could it have started from adding a second set of repetitions on Friday afternoon during my pulmonary therapy?
Could it be because I have not been sleeping well?
Could it be from the trip to Baraboo and back? I'm not usually the driver and round trip that was four hours?
It's been rough. In addition to the increase in aches and pain and problematic sleeping or not sleeping, I have been crabby, snapping at everything and everyone. OK, not everyone, just those I love the most and sleep under the same roof with. Just those three people that mean more to me than anything else in this world. Why am I hurting them with my terrible mood?
Could it be the prednisone?
Could it be because I am losing my battle with sweets and food in general?
It is as if bad is attracting bad and the more bad there is the harder it is to escape from it.
I know this too shall pass. I just wish I knew when.
Dear God...please help me see my cup overflowing. Help me say yes to the ones I love and the things that make me happy. Help me say no to the things that can be handled by others.
Help me get through these days and these tears stronger for it.
This is my life on prednisone...up and down. Crabby and stressed and tired and tearful and angry and eating even though I am not hungry. I am sick. It will get better.
Subscribe to:
Posts (Atom)