I was curious so I looked it up and this is what I found out:
The value of a horse is related to it's age, a younger horse is more valuable than an older horse.
You can determine the relative age of a horse by inspecting its teeth. Back in the day a horse was commonly given as a gift. If a man received a horse as a gift and then inspected inside its mouth, he was trying to assess the value of the gift he received. So, the saying means that you should not assess the value of any gift that you receive; rather you should be thankful for the thoughtfulness of the gift-giver.
Yesterday I took Star for a walk. The daffodils were bright, the sun shining, the trees budding...it was beautiful. Today a walk did not fit into the craziness.
I did try something new today. It was inspired by a book I am reading for my book club meeting this Saturday. It's called "The Happiness Project". In the book, the author decides she will carry a camera with her always. I am a terrible picture taker. My sister Beth does an amazing job, she has a great eye for it and that talent combined with her patience and really nice camera make it easy to keep my old camera out of reach. Today, I packed my camera in my purse and I don't know for sure but I think it may have inspired me to look for the beauty that surrounds me.
I noticed the tulips this morning as I rushed out the door to get to work. They looked different this morning than they did when I first noticed them yesterday afternoon. In the early morning, before the sun comes up the petals were closed up tight and their color is very different when it's closed up versus open. Tonight when I was laying in bed with Jake I noticed him sleeping on his side, with his hands folded under his chin...he was so peaceful. He is my little boy, growing up too fast. When I went back upstairs with my camera the moment was gone but I am so glad I noticed it.
I am thankful for the thoughtfulness of the gift-giver!
Good night.
Kris
Thursday, April 15, 2010
Wednesday, April 14, 2010
Day 1
Well, day 1 on prednisone has come and gone.
I got through the day with no sweets (I did have strawberries with a little whipped cream)
I took the stairs instead of the elevator.
I wrote down what I ate.
I did not go for a walk. Today I will walk when I get home from work.
About 7:00 PM I got a fairly bad headache that lasted until about 7:00 this morning.
I couldn't fall asleep which had the added benefit of extra time with Bill. I usually fall asleep hours before he does and last night we watched "Parenthood" and "24" and then went to bed at the same time. He fell asleep and I laid awake until at least 2:00.
Today is a new day, the sun is shining, and another benefit of the prednisone is that my hands don't hurt nearly as bad as they normally do. I know that I am taking it for my lungs but I'm certainly not going to look a "gift horse in the mouth" (what does that mean anyway)
This morning I had a quick conversation with my investment guy. He's a great guy, very knowledgeable and caring. He always takes time to ask about the family, the kids, my health.... He shared with me that his daughter was recently diagnosed with an autoimmune disease and is also being treated with high doses of prednisone. I told him about the book "Coping with Prednisone" and he is going to buy it for his daughter.
It was nice to be able to share what I learned with someone who I go to for answers. I was able to give back because of my experience with this. I hope that opportunities continue to present themselves where I can see the positive in all of this.
Have a blessed day.
Kris
I got through the day with no sweets (I did have strawberries with a little whipped cream)
I took the stairs instead of the elevator.
I wrote down what I ate.
I did not go for a walk. Today I will walk when I get home from work.
About 7:00 PM I got a fairly bad headache that lasted until about 7:00 this morning.
I couldn't fall asleep which had the added benefit of extra time with Bill. I usually fall asleep hours before he does and last night we watched "Parenthood" and "24" and then went to bed at the same time. He fell asleep and I laid awake until at least 2:00.
Today is a new day, the sun is shining, and another benefit of the prednisone is that my hands don't hurt nearly as bad as they normally do. I know that I am taking it for my lungs but I'm certainly not going to look a "gift horse in the mouth" (what does that mean anyway)
This morning I had a quick conversation with my investment guy. He's a great guy, very knowledgeable and caring. He always takes time to ask about the family, the kids, my health.... He shared with me that his daughter was recently diagnosed with an autoimmune disease and is also being treated with high doses of prednisone. I told him about the book "Coping with Prednisone" and he is going to buy it for his daughter.
It was nice to be able to share what I learned with someone who I go to for answers. I was able to give back because of my experience with this. I hope that opportunities continue to present themselves where I can see the positive in all of this.
Have a blessed day.
Kris
Tuesday, April 13, 2010
Down the hatch...
Today I took my first 60mg of prednisone.
Who knows, maybe the side effects won't get me like they did the last time.
I know more now. I'm smarter than the last time around.
So, I don't have a choice about the medication but I do have other choices I can make. Here are a few:
40 mg's for 4 weeks
30 mg's after that.
My next appointment is scheduled for July 28th which seems an awfully long time away but that's the plan and I am going to stick to it.
I know you are praying for me. Please make sure to include Bill, Emma and Jacob. Like I needed to ask....
Thanks.
Kris
Who knows, maybe the side effects won't get me like they did the last time.
I know more now. I'm smarter than the last time around.
So, I don't have a choice about the medication but I do have other choices I can make. Here are a few:
- Today I took the stairs instead of the elevator.
- I am going to try really hard to eliminate sweets and treat myself to fresh berries for dessert instead.
- I am going to walk 5 days a week or more. Star's a lucky dog.
- I am going to write down what I am eating, when and why.
I talked to the nurse this morning. She gave me the tapering schedule for the prednisone and then we talked about the possible side effects. She said it's a lot like having PMS all the time. I may want to eat all the time. She recommended that I really listen to my body to determine if I need something to eat or if it's the medicine (that's why I will be writing it all down). She said my face may puff up but I need to remember that it's temporary and will go away when I stop taking the medicine. She said I may have unexpected emotions (sadness, anger, etc...). Again, reminding myself that this too shall pass. That's why I am going to walk more.
60mg's for one week40 mg's for 4 weeks
30 mg's after that.
My next appointment is scheduled for July 28th which seems an awfully long time away but that's the plan and I am going to stick to it.
I know you are praying for me. Please make sure to include Bill, Emma and Jacob. Like I needed to ask....
Thanks.
Kris
Sunday, April 11, 2010
Prednisone it is...
Last Thursday night as we packed for our Florida vacation the phone rang and it was Dr. Cohen. She had the opportunity to talk to Dr. Adl and wanted to discuss my concern regarding the use of prednisone to treat my lungs. Prednisone it shall be for the next four months. I have a choice not to take it but the consequences are unacceptable, unthinkable really.
Prednisone gives me the chance to get rid of the inflammation in my lungs. If I don't get rid of the inflammation in my lungs there is a very likely chance that the inflammation turns to scar tissue which cannot be reversed. If your lung tissue scars it no longer moves. If your lungs can't move...you die.
Of course she was a little nicer in her delivery of this information. It went something like this...
"I know you don't want to gain weight....I know you don't like how it makes you feel....we can try to off set the negative side effects with other medications. I do know that you love your kids and your husband and you will do what you need to do so you can continue to be around for them"
As you can imagine, this is hard information to swallow. I packed, I cried, I packed some more. Before going to bed, Bill said to me that he would support any decision I made as he was sure that if the roles were reversed, I would do the same for him.
At 1:00 in the morning the alarm went off and by 2:15 AM we were in the car starting our long drive down to Florida. Before getting in the car Bill and I hugged for a long time and I told him that if the roles were reversed, I would make him take the medication. There would be no way I would let him chose the unthinkable. He smiled, and hugged me tight and said...honey, you just needed time to get there on your own. If you didn't, I would make you take it too.
In Tennessee I called the lung doctor and told her I had prednisone with me and would start taking it right away. She told me I should wait until after my vacation. Bill and I both took that to mean that although it is a serious condition, maybe it wasn't quite as bad as the picture we had painted if I could wait until after vacation to start.
Tomorrow morning, as promised, I will call the doctor and get started on getting better. In addition to the prednisone I will start pulmonary physical therapy and in four months the CT Scan and Pulmonary Function Tests will be repeated to see how far I have come.
I will keep you posted...thanks for checking in.
Kris
Prednisone gives me the chance to get rid of the inflammation in my lungs. If I don't get rid of the inflammation in my lungs there is a very likely chance that the inflammation turns to scar tissue which cannot be reversed. If your lung tissue scars it no longer moves. If your lungs can't move...you die.
Of course she was a little nicer in her delivery of this information. It went something like this...
"I know you don't want to gain weight....I know you don't like how it makes you feel....we can try to off set the negative side effects with other medications. I do know that you love your kids and your husband and you will do what you need to do so you can continue to be around for them"
As you can imagine, this is hard information to swallow. I packed, I cried, I packed some more. Before going to bed, Bill said to me that he would support any decision I made as he was sure that if the roles were reversed, I would do the same for him.
At 1:00 in the morning the alarm went off and by 2:15 AM we were in the car starting our long drive down to Florida. Before getting in the car Bill and I hugged for a long time and I told him that if the roles were reversed, I would make him take the medication. There would be no way I would let him chose the unthinkable. He smiled, and hugged me tight and said...honey, you just needed time to get there on your own. If you didn't, I would make you take it too.
In Tennessee I called the lung doctor and told her I had prednisone with me and would start taking it right away. She told me I should wait until after my vacation. Bill and I both took that to mean that although it is a serious condition, maybe it wasn't quite as bad as the picture we had painted if I could wait until after vacation to start.
Tomorrow morning, as promised, I will call the doctor and get started on getting better. In addition to the prednisone I will start pulmonary physical therapy and in four months the CT Scan and Pulmonary Function Tests will be repeated to see how far I have come.
I will keep you posted...thanks for checking in.
Kris
Wednesday, March 31, 2010
The results are in....
Today was my follow up appointment with Dr. Adl regarding the bronchoscopy. The results were able to rule out infection and combined with the results of the earlier CT Scan and Pulmonary Function Tests everything points to the myositis being active again.
Basically Dr. Adl believe that the myositis and interstitial lung disease that came with it has indeed advanced. There are basically three levels of pneumonitis and the level that I am at is the preferred one. It is called nonspecific interstitial pneumonitis (which basically means inflammation of lung tissue).
Dr. Adl's treatment recommendation is high doses of prednisone with a follow up pulmonary function test and CT Scan in 4 months (like 60 mg for four months....yikes).
In 4 months we will see how I am doing and at that time if there are no improvements they may switch and put me on a different immunosuppressive drug.
From past blog entries you know how much I do not want to go back on prednisone.
I did share my concern with Dr. Adl about going back on prednisone so she is going to defer to Dr. Cohen for that decision. She emphasized how very important it is that the three of us (two doctors and me) stay in communication with each other.
I learned something new; the "ground glass" which is what it has been called in the past can be reversed with proper treatment. That's good new and a good thing to focus on.
In our first office visit with Dr. Adl she recommended that we use a bed wedge and elevate the head of our bed 8-10 inches. I do not have noticeable heartburn or acid reflux so I did not immediately act on this suggestion. However, today when I asked if I needed to continue taking the heartburn/acid reflux prescription and she said "absolutely", I followed up with the question"how important is that bed wedge?" Apparently it is very important and may help prevent any additional factors from taking their hits on my lungs which are already compromised.
You don't have to tell me twice...off I went to Bed, Bath and Beyond with my 20% coupon in hand. I am now the proud owner of the bed wedge pillow.
So, it wasn't great news, but it's not terrible either....and so we continue, taking it one day at a time.
Thanks for checking in.
Kris
Basically Dr. Adl believe that the myositis and interstitial lung disease that came with it has indeed advanced. There are basically three levels of pneumonitis and the level that I am at is the preferred one. It is called nonspecific interstitial pneumonitis (which basically means inflammation of lung tissue).
Dr. Adl's treatment recommendation is high doses of prednisone with a follow up pulmonary function test and CT Scan in 4 months (like 60 mg for four months....yikes).
In 4 months we will see how I am doing and at that time if there are no improvements they may switch and put me on a different immunosuppressive drug.
From past blog entries you know how much I do not want to go back on prednisone.
I did share my concern with Dr. Adl about going back on prednisone so she is going to defer to Dr. Cohen for that decision. She emphasized how very important it is that the three of us (two doctors and me) stay in communication with each other.
I learned something new; the "ground glass" which is what it has been called in the past can be reversed with proper treatment. That's good new and a good thing to focus on.
In our first office visit with Dr. Adl she recommended that we use a bed wedge and elevate the head of our bed 8-10 inches. I do not have noticeable heartburn or acid reflux so I did not immediately act on this suggestion. However, today when I asked if I needed to continue taking the heartburn/acid reflux prescription and she said "absolutely", I followed up with the question"how important is that bed wedge?" Apparently it is very important and may help prevent any additional factors from taking their hits on my lungs which are already compromised.
You don't have to tell me twice...off I went to Bed, Bath and Beyond with my 20% coupon in hand. I am now the proud owner of the bed wedge pillow.
So, it wasn't great news, but it's not terrible either....and so we continue, taking it one day at a time.
Thanks for checking in.
Kris
Thursday, March 25, 2010
I have a small nose...
Well, yesterday has come and gone. The procedure is over and now it's another week of waiting.
I will bore you with the details because some of you want to know what it's all about, others just want to know I am OK.
I am OK. If you want a play by play of yesterday, read on...
Auntie Vicki came over to get the kids off to school. Bill took me to the hospital.
I got prepped for the procedure with an IV that would supply me with the fantastic medication that would help me forget.
They wheeled me in to the room and hooked me up to all the necessary machines. A respiratory assistant had me breathe on a misting tube that numbed the back of my throat and tasted like crap. Then she took a tube (about the size of a travel toothpaste) filled with a lubricant and had me snort it...the whole tube. This also smelled terrible and made me gag. At this point I began to wonder when I could get the "forgetting" medicine. Now, the respiratory assistant said that she needed to prep my nose for the tube that the doctor would use. She took a very long q-tip and started working it into my nose and down my throat. First one side, than the other, back and forth, over and over. This was more than a little uncomfortable...and the breathing exercises that I learned when I was pregnant with the kids came in handy.....WHERE IS THE FORGETTING MEDICINE.
The doctor came in, asked if I had any questions and that is the last thing I remember. Apparently it was all done in about 20 minutes. She washed out my lungs with a fluid and than sucked the fluid back out. This is what they will be testing over the next week to determine what is going on in there.
I was in recovery for an hour or two letting the sedation wear off and by 11:00 we were headed home. Bill bought me a chocolate shake because my throat hurt, tucked me in bed where I stayed until about 4:00.
When I woke up I had a terrible pain in my back under my right shoulder blade. I could not take a deep breath without there being a shooting pain and this continued for about 45 minutes before I decided I needed to call the doctor back.
Off we went, back to the hospital, this time with the whole family in tow. I needed another x-ray to make sure that my lung had not collapsed. Good news...my lung had not collapsed. I had fluid remaining from the procedure and that is what was probably causing the pain. They sent me home with instructions take the deep breaths even if it caused shooting pain to take more Tylenol and/or Motrin. If the pain got any worse, I should head to the ER.
Back home we went...this time Bill stopped and bought me a strawberry shake. ;0)
Two shakes in one day; I am a lucky girl.
This morning when I woke up, the pain was gone. My throat is a little sore but not nearly has as bad as my sinus cavities. They certainly feel like they took a real beating. Did I mention in the end that my nose was too small for the procedure and they had to go down my throat? I wish we would have known that before the q-tips.
So, I am fine. It's back to waiting. I will post more when I know more.
Thanks for your prayers and for checking in.
Kris
I will bore you with the details because some of you want to know what it's all about, others just want to know I am OK.
I am OK. If you want a play by play of yesterday, read on...
Auntie Vicki came over to get the kids off to school. Bill took me to the hospital.
I got prepped for the procedure with an IV that would supply me with the fantastic medication that would help me forget.
They wheeled me in to the room and hooked me up to all the necessary machines. A respiratory assistant had me breathe on a misting tube that numbed the back of my throat and tasted like crap. Then she took a tube (about the size of a travel toothpaste) filled with a lubricant and had me snort it...the whole tube. This also smelled terrible and made me gag. At this point I began to wonder when I could get the "forgetting" medicine. Now, the respiratory assistant said that she needed to prep my nose for the tube that the doctor would use. She took a very long q-tip and started working it into my nose and down my throat. First one side, than the other, back and forth, over and over. This was more than a little uncomfortable...and the breathing exercises that I learned when I was pregnant with the kids came in handy.....WHERE IS THE FORGETTING MEDICINE.
The doctor came in, asked if I had any questions and that is the last thing I remember. Apparently it was all done in about 20 minutes. She washed out my lungs with a fluid and than sucked the fluid back out. This is what they will be testing over the next week to determine what is going on in there.
I was in recovery for an hour or two letting the sedation wear off and by 11:00 we were headed home. Bill bought me a chocolate shake because my throat hurt, tucked me in bed where I stayed until about 4:00.
When I woke up I had a terrible pain in my back under my right shoulder blade. I could not take a deep breath without there being a shooting pain and this continued for about 45 minutes before I decided I needed to call the doctor back.
Off we went, back to the hospital, this time with the whole family in tow. I needed another x-ray to make sure that my lung had not collapsed. Good news...my lung had not collapsed. I had fluid remaining from the procedure and that is what was probably causing the pain. They sent me home with instructions take the deep breaths even if it caused shooting pain to take more Tylenol and/or Motrin. If the pain got any worse, I should head to the ER.
Back home we went...this time Bill stopped and bought me a strawberry shake. ;0)
Two shakes in one day; I am a lucky girl.
This morning when I woke up, the pain was gone. My throat is a little sore but not nearly has as bad as my sinus cavities. They certainly feel like they took a real beating. Did I mention in the end that my nose was too small for the procedure and they had to go down my throat? I wish we would have known that before the q-tips.
So, I am fine. It's back to waiting. I will post more when I know more.
Thanks for your prayers and for checking in.
Kris
Wednesday, March 17, 2010
The nurse called....
The nurse called yesterday just to check in and see how I was feeling and to see if I had any questions. I didn't call her back. I had to take some time to think about it which I did last night as I was trying to fall asleep. From very deep in my being came tears a flowing....I cried myself to sleep. It was a combination of being scared, tired, achy, worried, etc...
Scared of the procedure: will it hurt, will it work, will it provide the answers they doctors are looking for, what will they find, how will they treat their findings?
Tired: I have been taking advil PM to sleep at night. It's working but I don't want to take it every night. I wanted to fall asleep but I couldn't turn my brain off, you know...the scared and the worry were taking over.
Achy: my hands ache nearly all the time now. It's bad at night when I am laying there trying to get comfortable. Where should I put them? On my stomach, over my head, under my pillow, it's just hard to find the right placement.
Worried: I watched the show "Parenthood" last night. I loved it but I laid in bed wondering what kind of parent I am being. I think I am a good mom, but how do I know for sure? Worried that the procedure next week won't provide the answers and we will need to keep searching. Worried that I will have to take prednisone again. The drug has terrible side effects and I don't like the person I become when I am taking it and I took it for nearly three years because my body and disease became dependent on it. It took forever to wean myself off of it. The other day someone (not my doctor but someone with personal experience with autoimmune disease) said I may just need to take a low dose forever to keep my disease in check. NO, I don't want to. There has to be another answer. Please let there be another answer.
Today I called the nurse back. She said the procedure is fairly quick. I need to be at the hospital at 7:30 and should be on my way home by noon or so. They will get an IV set and give me a conscious sedation. This means that although I will be "awake" I won't be able to remember what's going on. She said I will probably have a sore throat the next day but there shouldn't be any other side effects. I would be lying if I said I wasn't scared or worried anymore but I do feel much better about it.
I talked to Emma and Jacob about it last night. Jacob said he understood exactly what was going to happen as he had watched "Animal Emergency" and saw the doctor put a camera scope down the throat of a pelican and they got fishhooks and fishing line out of it's stomach that way.
So that's the update. It feels good to get it out there. Please know that although I don't sound strong, I am. My life has been planned by our great Creator, He holds me in the palm of his hand and I can feel His strength.
Good night.
Kris
Scared of the procedure: will it hurt, will it work, will it provide the answers they doctors are looking for, what will they find, how will they treat their findings?
Tired: I have been taking advil PM to sleep at night. It's working but I don't want to take it every night. I wanted to fall asleep but I couldn't turn my brain off, you know...the scared and the worry were taking over.
Achy: my hands ache nearly all the time now. It's bad at night when I am laying there trying to get comfortable. Where should I put them? On my stomach, over my head, under my pillow, it's just hard to find the right placement.
Worried: I watched the show "Parenthood" last night. I loved it but I laid in bed wondering what kind of parent I am being. I think I am a good mom, but how do I know for sure? Worried that the procedure next week won't provide the answers and we will need to keep searching. Worried that I will have to take prednisone again. The drug has terrible side effects and I don't like the person I become when I am taking it and I took it for nearly three years because my body and disease became dependent on it. It took forever to wean myself off of it. The other day someone (not my doctor but someone with personal experience with autoimmune disease) said I may just need to take a low dose forever to keep my disease in check. NO, I don't want to. There has to be another answer. Please let there be another answer.
Today I called the nurse back. She said the procedure is fairly quick. I need to be at the hospital at 7:30 and should be on my way home by noon or so. They will get an IV set and give me a conscious sedation. This means that although I will be "awake" I won't be able to remember what's going on. She said I will probably have a sore throat the next day but there shouldn't be any other side effects. I would be lying if I said I wasn't scared or worried anymore but I do feel much better about it.
I talked to Emma and Jacob about it last night. Jacob said he understood exactly what was going to happen as he had watched "Animal Emergency" and saw the doctor put a camera scope down the throat of a pelican and they got fishhooks and fishing line out of it's stomach that way.
So that's the update. It feels good to get it out there. Please know that although I don't sound strong, I am. My life has been planned by our great Creator, He holds me in the palm of his hand and I can feel His strength.
Good night.
Kris
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