Just got back from a wonderful trip to Pennsylvania. Flew out for a week to attend the 40th Wedding Anniversary Celebration for a dear couple who are like family to me. While I was there, we visited and stayed with more of their family in Willamsport. One night as we were all talking in the kitchen, the back door opened and in walked Marion. She let herself in, introductions were made and next thing I knew, we were all piled in her car headed up the street to see her little cottage at the top of a rolling hill - because she said we should! On the way there, she confessed to stopping by their barn earlier in the week and taking all of the eggs their hens had laid. I'm not sure why, but I immediately loved this lady. She was so intriguing to me. Talk about the perfect epitome of the bossy, butinski neighbor! Awesome! And besides that, she truly did have the most adorable cottage in the most beautiful setting ever. From the doorstep you could turn in every direction and overlook rolling hills, barns, fields, wood fences and thousands of trees. When we walked in I was so mad I didn't have my camera. From an old barn, she created the most cozy little home. Antique dishes, furniture, chairs, dolls, statues, toys....etc. you name it were the decor for this place. A kitchen, dining area and family room were the main floor. Up a little flight of wooden stairs was a loft with two little bedrooms. She showed us all of the things she made with her own hands.....her doll house was to die for! It wasn't until we went to her basement where she creates some of these treasures, that I realized why I just might love her so much! As we got talking, it came out that she had MS. She was diagnosed in her early 30's as well. I asked her what life had been like for her and it was so inspiring to listen to her. She had a period where she lost her eyesight, and has had some of the numbness issues as well. The burning question for me at that point was....... "Do you take the shots?" Her reply was a definite "No!" She had decided they weren't for her. With her bossy little attitude she explained to us how she just pretended that she didn't really have MS and just went on with life. She chose not to worry about it or think about it too much. She just lived her life and did whatever she wanted. She had gone years without having any exacerbations and was doing great. Marion stays busy and is always on the go. I loved talking to her and hearing about her life with MS - She was a true inspiration. I love meeting people who appear to be doing well. It gives me hope. As we walked out to leave, I over heard her telling CaMarie how to run her barn, take care of her animals and live her life! And.....since I already decided I wanna be just like her with MS when I'm older, don't be surprised if I become a 'lil bossy too! After all, Marion is, and you'd never know she has MS!
Tuesday, November 30, 2010
Marion's Way or the Highway!
Just got back from a wonderful trip to Pennsylvania. Flew out for a week to attend the 40th Wedding Anniversary Celebration for a dear couple who are like family to me. While I was there, we visited and stayed with more of their family in Willamsport. One night as we were all talking in the kitchen, the back door opened and in walked Marion. She let herself in, introductions were made and next thing I knew, we were all piled in her car headed up the street to see her little cottage at the top of a rolling hill - because she said we should! On the way there, she confessed to stopping by their barn earlier in the week and taking all of the eggs their hens had laid. I'm not sure why, but I immediately loved this lady. She was so intriguing to me. Talk about the perfect epitome of the bossy, butinski neighbor! Awesome! And besides that, she truly did have the most adorable cottage in the most beautiful setting ever. From the doorstep you could turn in every direction and overlook rolling hills, barns, fields, wood fences and thousands of trees. When we walked in I was so mad I didn't have my camera. From an old barn, she created the most cozy little home. Antique dishes, furniture, chairs, dolls, statues, toys....etc. you name it were the decor for this place. A kitchen, dining area and family room were the main floor. Up a little flight of wooden stairs was a loft with two little bedrooms. She showed us all of the things she made with her own hands.....her doll house was to die for! It wasn't until we went to her basement where she creates some of these treasures, that I realized why I just might love her so much! As we got talking, it came out that she had MS. She was diagnosed in her early 30's as well. I asked her what life had been like for her and it was so inspiring to listen to her. She had a period where she lost her eyesight, and has had some of the numbness issues as well. The burning question for me at that point was....... "Do you take the shots?" Her reply was a definite "No!" She had decided they weren't for her. With her bossy little attitude she explained to us how she just pretended that she didn't really have MS and just went on with life. She chose not to worry about it or think about it too much. She just lived her life and did whatever she wanted. She had gone years without having any exacerbations and was doing great. Marion stays busy and is always on the go. I loved talking to her and hearing about her life with MS - She was a true inspiration. I love meeting people who appear to be doing well. It gives me hope. As we walked out to leave, I over heard her telling CaMarie how to run her barn, take care of her animals and live her life! And.....since I already decided I wanna be just like her with MS when I'm older, don't be surprised if I become a 'lil bossy too! After all, Marion is, and you'd never know she has MS!
Monday, November 8, 2010
Momma saw the Dr. and the Dr. Said......
Time to get on the shots.
I went in for my follow-up appointment today with Dr. H. I have a love hate relationship with that guy! Love him cause he gave me a whole new outlook on life with MS vs. the outlook my first Doc. gave - along with the fact that he listens and he cares, but hate him cause a visit with him only means one thing......I have MS. I went in to that appointment today feeling the best I have felt since this whole thing started 11 months ago. 11 MONTHS! How is it possible it's almost been a year since this journey started? I know I have stated at different points over the last few months that I have felt the best I have felt in a long time, but the truth is, each time I feel a little better, it IS better than the time before. However, this time around I would say I am pretty much back to my normal self again. Knock on wood. Since the first part of January, I have been numb from the chest down. I can now say, I am numb from the very tip of my toes to the very, very tip of my toes. And that my friends, is an amazing place to be at this point. I have to really rub and search for numbness around my waist and legs. Whereas before, I could feel the numbness just moving around in my clothes.
So, that is the reason I went in to my appointment with Dr. H. today very confident he would tell me, "this just can't possibly be MS." I've been telling myself that for weeks now. That's the problem with the ups and downs. When you're up.....you're really up and think you don't have it! When you're down,....well that's when it stinks. I used to think about it on a daily basis when the numbness was stronger. Feeling so good lately, I haven't given it much thought. I guess that's why my appointment today had me crying on the phone afterwards to my sweet friend Heidi, (thank you Heidi), and the rest of the drive home. Oh yeah, and to Trav later on in the kitchen as we discussed the appointment today. (I'm kindof a baby!)
Even though I feel SO good, Dr. H. still feels very strongly it is time for me to get on the shots. Because I had another new lesion show up on my c-spine on the MRI's from July, that is enough of an alarm to him that I definitely have the potential to have some serious things happen in my spinal cord that we could have a better chance at fighting if I get started on the therapy. He wants to send me in for another set of MRI's hoping to convince me that it's time.
We are not against the shots. We just want a baby. To us, Shots and trying for a baby do not mix. He says Copaxone is a class C when it comes to pregnancy and meds. Studies show that there have not been any defects or harm done to a developing baby, but he is not aware of what that means in regards to fertility and miscarriage. His suggestion is to start Copaxone now, and get off of it as soon as I find out I'm expecting. Coming off of 2 miscarriages, the possibility of risk to fertility or a pregnancy is just not worth it to me. Dr. H. was very understanding of this when I shared my concern. I may be totally over-cautious about it, but I just can't help it. After talking a little bit more about the pros, cons and side effects, I was able to openly admit to him that along with pregnancy concerns, bottom line is.......I'm afraid to pull the trigger. Saying yes to the shots makes the realization of this whole thing all the more definite. And then......I cried. (I'm a huge baby when it comes to this, did I mention that already?) And, again, Dr. H. was very understanding. He knows. He gets it. He told me he is there to support me, in whatever our decision is, not to talk us into anything.
Trav would like to do the MRI's to see how things look and to see if there have been any new changes. I do and don't. I'm torn. I don't know which way to go. Dr. H. left us with an appointment to come back in Jan. If we choose to do the MRI he will schedule it. (Heck, we kinda want to just cause this set would all be paid for by the insurance. We've reached our out of pocket maximum!) If we choose to start Copaxone, we make the call and he will start the injection training, figure out our insurance coverage, and help us find financial assistance for whatever won't be covered of the insane amount it costs yearly to do these daily shots.
I have used "Our and we" through this whole post. Trav has been there for me through all of this. He drops whatever he is doing to be with me at every appointment. He asks questions. He shares his concerns. We then talk it out together and fight this thing as a team. Dr. H. reiterated today the power of positive thinking. I think as we joke while we are there, he feels that I am doing so well because we have tried to remain as positive as possible. I have Trav to thank for that. Without his love and support, this would be so much harder to go through.
After much thought now at the end of the day, Faith is our choice of therapy for now. We have a lot of praying to do to get the answers needed to know which path we should continue on. I want to know that whatever we choose to do, that it's the Lord's will.
As we get closer to Thanksgiving, I have to say even though there have been many tears, hard days, lots of fear, tough appointments and tests, I am extremely grateful and recognize how lucky I am to feel as good as I do. I have become so grateful for the little things. I ride a bike and understand it is a blessing my legs can do that. I play the piano and love every second I can feel the keys under my fingertips. I sing a song or talk to a friend and I have a voice. I get an eye exam and other than a little normal poor vision, I can still see. I have MS, yet I am still me and I still have all the gifts Heavenly Father gave me. I couldn't be any more grateful for that. I know the answers will come, I've just gotta gear up enough strength to face whatever they may be.
I went in for my follow-up appointment today with Dr. H. I have a love hate relationship with that guy! Love him cause he gave me a whole new outlook on life with MS vs. the outlook my first Doc. gave - along with the fact that he listens and he cares, but hate him cause a visit with him only means one thing......I have MS. I went in to that appointment today feeling the best I have felt since this whole thing started 11 months ago. 11 MONTHS! How is it possible it's almost been a year since this journey started? I know I have stated at different points over the last few months that I have felt the best I have felt in a long time, but the truth is, each time I feel a little better, it IS better than the time before. However, this time around I would say I am pretty much back to my normal self again. Knock on wood. Since the first part of January, I have been numb from the chest down. I can now say, I am numb from the very tip of my toes to the very, very tip of my toes. And that my friends, is an amazing place to be at this point. I have to really rub and search for numbness around my waist and legs. Whereas before, I could feel the numbness just moving around in my clothes.So, that is the reason I went in to my appointment with Dr. H. today very confident he would tell me, "this just can't possibly be MS." I've been telling myself that for weeks now. That's the problem with the ups and downs. When you're up.....you're really up and think you don't have it! When you're down,....well that's when it stinks. I used to think about it on a daily basis when the numbness was stronger. Feeling so good lately, I haven't given it much thought. I guess that's why my appointment today had me crying on the phone afterwards to my sweet friend Heidi, (thank you Heidi), and the rest of the drive home. Oh yeah, and to Trav later on in the kitchen as we discussed the appointment today. (I'm kindof a baby!)
Even though I feel SO good, Dr. H. still feels very strongly it is time for me to get on the shots. Because I had another new lesion show up on my c-spine on the MRI's from July, that is enough of an alarm to him that I definitely have the potential to have some serious things happen in my spinal cord that we could have a better chance at fighting if I get started on the therapy. He wants to send me in for another set of MRI's hoping to convince me that it's time.
We are not against the shots. We just want a baby. To us, Shots and trying for a baby do not mix. He says Copaxone is a class C when it comes to pregnancy and meds. Studies show that there have not been any defects or harm done to a developing baby, but he is not aware of what that means in regards to fertility and miscarriage. His suggestion is to start Copaxone now, and get off of it as soon as I find out I'm expecting. Coming off of 2 miscarriages, the possibility of risk to fertility or a pregnancy is just not worth it to me. Dr. H. was very understanding of this when I shared my concern. I may be totally over-cautious about it, but I just can't help it. After talking a little bit more about the pros, cons and side effects, I was able to openly admit to him that along with pregnancy concerns, bottom line is.......I'm afraid to pull the trigger. Saying yes to the shots makes the realization of this whole thing all the more definite. And then......I cried. (I'm a huge baby when it comes to this, did I mention that already?) And, again, Dr. H. was very understanding. He knows. He gets it. He told me he is there to support me, in whatever our decision is, not to talk us into anything.Trav would like to do the MRI's to see how things look and to see if there have been any new changes. I do and don't. I'm torn. I don't know which way to go. Dr. H. left us with an appointment to come back in Jan. If we choose to do the MRI he will schedule it. (Heck, we kinda want to just cause this set would all be paid for by the insurance. We've reached our out of pocket maximum!) If we choose to start Copaxone, we make the call and he will start the injection training, figure out our insurance coverage, and help us find financial assistance for whatever won't be covered of the insane amount it costs yearly to do these daily shots.
I have used "Our and we" through this whole post. Trav has been there for me through all of this. He drops whatever he is doing to be with me at every appointment. He asks questions. He shares his concerns. We then talk it out together and fight this thing as a team. Dr. H. reiterated today the power of positive thinking. I think as we joke while we are there, he feels that I am doing so well because we have tried to remain as positive as possible. I have Trav to thank for that. Without his love and support, this would be so much harder to go through.
After much thought now at the end of the day, Faith is our choice of therapy for now. We have a lot of praying to do to get the answers needed to know which path we should continue on. I want to know that whatever we choose to do, that it's the Lord's will.
As we get closer to Thanksgiving, I have to say even though there have been many tears, hard days, lots of fear, tough appointments and tests, I am extremely grateful and recognize how lucky I am to feel as good as I do. I have become so grateful for the little things. I ride a bike and understand it is a blessing my legs can do that. I play the piano and love every second I can feel the keys under my fingertips. I sing a song or talk to a friend and I have a voice. I get an eye exam and other than a little normal poor vision, I can still see. I have MS, yet I am still me and I still have all the gifts Heavenly Father gave me. I couldn't be any more grateful for that. I know the answers will come, I've just gotta gear up enough strength to face whatever they may be.
Monday, November 1, 2010
It's Autumn Time, It's Autumn Time......
And while that means it's my favorite time of year for many reasons, its also means I have to put away my trusty flip flops. I have never been a huge fan of flip flops til this year! I've always had a little problem with my feet and showing them off to the world in a pair of flip flops has never seemed exciting to me. However, when your feet are numb.....they truly become a gift from Heaven! I have lived in flip flops since the snow melted early this spring. Those tiny straps across the top of my foot are the only thing that rubs against it making the numbness bearable. I didn't realize just how much I have loved them til my little boy was playing in the Semi-Finals of Football last Saturday in cold temps! I put on a pair of socks, zipped up my boots and headed to the game. Man, is it going to be a long winter! I'm not loving having to wear shoes and socks again. I ran into this video on another MS blog and LOVED it! It is so far out there weird, but so is everything about MS and what it does! It describes in the strangest way, what it's like to have to put those socks on and feel the pins and needles!! Enjoy! (Click on the video to see full width)
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