A lot has happened since the last time I posted and I planned a long update but today I just don't seem to have it in me so I'll just document the highlights.
Yesterday I went to work on a fact finding mission but the only thing I learned is that not even the bosses know what's going on. I still have no final schedule and no students enrolled in my courses. I did track down my stuff and saw my new office but no one is allowed to check out keys yet anyway. I spoke to one of the assistant principals for about two minutes and he assured me that by August 10th I would have a schedule. He basically told me to go home and enjoy the rest of my vacation. This is a bad sign about what awaits me when work officially starts but you don't have to tell me twice to chill.
I also spoke to the head of HR and she was very helpful. She gave me FMLA (Family and Medical Leave Act) paperwork that will allow me to take intermitten leave as needed for my health. She will also inform my boss for me. That is a relief.
I used the time I would have worked to take care of some health stuff. I got a new prescription for a stronger painkiller than the over-the-counter stuff I have been using for headaches and joint pain. I took some this morning but my body still hurts. I think it's from the cold and damp. Whatever the cause, my hands, wrists and knees are stiff and sore so I don't feel like doing much.
I talked to the injection nurse at Kaiser and she told me how to get set up with the Copaxone. She said it would only cost me about $30.00 or $40.00 a month out of pocket. I can just start in September when I am ready. I am glad that my cost won't be too bad.
I also went to my acupuncturist for the IgG and IgA blood tests and we should have the results from those tests and the genetic tests in a few weeks. At that point, we can see if there is anything I can do with diet to control some of my symptoms. If there is not, at least I will know I tried everything.
Today I am grateful for more time off to relax.
Thursday, July 30, 2009
Tuesday, July 28, 2009
No rest for the wicked
My trip was great so I didn't wallow until I got home. I'm proud to say that I only spent one day really feeling sorry for myself and doing little then after a really good cry, I decided to get on with my life. I figured, "There is no rest for the wicked" so I might as well get on with my life. I still am not feeling like my spirited self but two days in a row, I have forced myself out of bed and started doing the things I need to do before school starts.
Yesterday I read all your helpful comments on DMDs. I am leaning toward Copaxone so I read through their whole website and then called Shared Solutions to get my name into their system and to get the process rolling. I wasn't sure how things worked so now I know next steps for getting started with Copaxone or another DMD. I guess I just need to let my neurologist and my insurance know which I choose and then they will direct me from there. The Shared Solutions people were very nice and helpful. I actually talked to four different people and there was no wait time. Now that's good service...
I discussed the whole MRI/DMD situation with my mom and I told her I had already done just about everything holistic that I could think of. The only thing I have not done is genetic testing for allergies to gluten, dairy and soy. My mom just learned she is intolerant to gluten. We both decided that my next step before starting on a med was to get the genetic testing done. I talked to my acupuncturist and he helped me order the tests. I am also going to his office to get an "IGA and IGG" test done that we can send in. Once the data comes in, we can look at the tests together and see if there are other things I can do with diet to help control my disease. All this said, I don't think gluten intolerance causes lesions so I am still getting myself prepared for a DMD.
I start work on August 10th and I'm gearing up for that as well. I am anticipating a bit of a stressful start so I'm going in tomorrow to at least see what to expect for this upcoming year. Yesterday, the ESL coach position in my school opened up so I applied but I really won't know if that is my future for a little while so in the meantime, I want to be proactive in my current role. I have realized that without a coach, this may be tough so even if I don't get the job itself, I will essentially have to do that work until someone is hired. My fingers are crossed that since I know the work, I will be the logical choice for the job. Either way, I don't think I will start the meds until sometime in September. There is part of me that wants to skip it but as just about everyone has pointed out, "You don't want to wait ten years and wonder if there is more you could have done to prevent deterioration." I am still scared about both the injections and the side-effects but I'm coming to terms with my fear.
Today I am grateful to have a plan of attack for my future.
Yesterday I read all your helpful comments on DMDs. I am leaning toward Copaxone so I read through their whole website and then called Shared Solutions to get my name into their system and to get the process rolling. I wasn't sure how things worked so now I know next steps for getting started with Copaxone or another DMD. I guess I just need to let my neurologist and my insurance know which I choose and then they will direct me from there. The Shared Solutions people were very nice and helpful. I actually talked to four different people and there was no wait time. Now that's good service...
I discussed the whole MRI/DMD situation with my mom and I told her I had already done just about everything holistic that I could think of. The only thing I have not done is genetic testing for allergies to gluten, dairy and soy. My mom just learned she is intolerant to gluten. We both decided that my next step before starting on a med was to get the genetic testing done. I talked to my acupuncturist and he helped me order the tests. I am also going to his office to get an "IGA and IGG" test done that we can send in. Once the data comes in, we can look at the tests together and see if there are other things I can do with diet to help control my disease. All this said, I don't think gluten intolerance causes lesions so I am still getting myself prepared for a DMD.
I start work on August 10th and I'm gearing up for that as well. I am anticipating a bit of a stressful start so I'm going in tomorrow to at least see what to expect for this upcoming year. Yesterday, the ESL coach position in my school opened up so I applied but I really won't know if that is my future for a little while so in the meantime, I want to be proactive in my current role. I have realized that without a coach, this may be tough so even if I don't get the job itself, I will essentially have to do that work until someone is hired. My fingers are crossed that since I know the work, I will be the logical choice for the job. Either way, I don't think I will start the meds until sometime in September. There is part of me that wants to skip it but as just about everyone has pointed out, "You don't want to wait ten years and wonder if there is more you could have done to prevent deterioration." I am still scared about both the injections and the side-effects but I'm coming to terms with my fear.
Today I am grateful to have a plan of attack for my future.
Sunday, July 26, 2009
Vacation, MRI and DMDs
This post has a little good, bad and ugly...
I will start with the good. I had a great vacation in California. The weather was lovely and the beach was awesome. I got plenty of sun but not too much. I also never got too hot.
We had a great time with my husband's family. We got to meet and hang out with our new baby niece for the first time. She is one of the cutest, sweetest babies I have ever seen and I have known a lot of babies. The whole famiy spent a good deal of the time just watching her. She was a great source of entertainment. This week's joke: "How many adults does it take to care for one baby?" We found it took at least four or five. Our time with her was really special. I may post a few pictures in the next few days.
Vacation was extremely relaxing and enjoyable. That was a good thing because now I will get into the bad...
I got the results from my MRI and I have three new lesions. My neurologist is suggesting that I go on a DMD. He wants me to choose between Copaxone, Rebif and Avonex.
While the results of my MRI were not surprising, considering this summer's symptoms, I am bummed. I have long been hoping that my diagnosis might miraculously change. I was also hoping my lesions would shrink or at least stay the same. My neurologist told me not to worry too much about the fact that I now have five lesions because MRIs can vary a lot from one time to the next but he did say that these results indicate that my lesions are active. My initial diagnosis was benign MS but alas, that is out the window now. I am sad to know my MS is progressing because I have worked so hard to treat my disease without meds. I eat healthy and get plenty of excercise. I still have full physical function and I work full time. I am afraid that going on a DMD is going to further complicate my life and make it harder to keep up with my rigorous full time job. I am now giving careful consideration to how I should proceed from here. I am hoping the MS community will sound off on the questions I have posted below.
Here are my questions.
1) Why did you choose to go on DMDs if you are on one?
2) Which DMDs have you been on?
3) What were the side effects with each drug you tried?
4) How much did the drug/s cost?
5) Based on your experience, which drug would you recommend and why?
Thanks so much for your help. This is a hard decision for me and frankly, not one I ever planned to make. I know, denial is not a river in Egypt :)
I will start with the good. I had a great vacation in California. The weather was lovely and the beach was awesome. I got plenty of sun but not too much. I also never got too hot.
We had a great time with my husband's family. We got to meet and hang out with our new baby niece for the first time. She is one of the cutest, sweetest babies I have ever seen and I have known a lot of babies. The whole famiy spent a good deal of the time just watching her. She was a great source of entertainment. This week's joke: "How many adults does it take to care for one baby?" We found it took at least four or five. Our time with her was really special. I may post a few pictures in the next few days.
Vacation was extremely relaxing and enjoyable. That was a good thing because now I will get into the bad...
I got the results from my MRI and I have three new lesions. My neurologist is suggesting that I go on a DMD. He wants me to choose between Copaxone, Rebif and Avonex.
While the results of my MRI were not surprising, considering this summer's symptoms, I am bummed. I have long been hoping that my diagnosis might miraculously change. I was also hoping my lesions would shrink or at least stay the same. My neurologist told me not to worry too much about the fact that I now have five lesions because MRIs can vary a lot from one time to the next but he did say that these results indicate that my lesions are active. My initial diagnosis was benign MS but alas, that is out the window now. I am sad to know my MS is progressing because I have worked so hard to treat my disease without meds. I eat healthy and get plenty of excercise. I still have full physical function and I work full time. I am afraid that going on a DMD is going to further complicate my life and make it harder to keep up with my rigorous full time job. I am now giving careful consideration to how I should proceed from here. I am hoping the MS community will sound off on the questions I have posted below.
Here are my questions.
1) Why did you choose to go on DMDs if you are on one?
2) Which DMDs have you been on?
3) What were the side effects with each drug you tried?
4) How much did the drug/s cost?
5) Based on your experience, which drug would you recommend and why?
Thanks so much for your help. This is a hard decision for me and frankly, not one I ever planned to make. I know, denial is not a river in Egypt :)
Tuesday, July 21, 2009
California here I come
I'm heading out first thing tomorrow for a short trip to northern California to see some of my husband's family. It should be a nice break (not that I have not been having one). I'm not sure that I will be near the computer but I will be sure to create a post about the highlights when I get back.
I hear the weather is cool where we are going so that will be a nice respite. We get to see my husband's new, baby niece for the first time while we are there. I am looking forward to a nice, relaxing trip.
I hear the weather is cool where we are going so that will be a nice respite. We get to see my husband's new, baby niece for the first time while we are there. I am looking forward to a nice, relaxing trip.
Sunday, July 19, 2009
Very brief update
I have finally cooled down a little. It seems like the weather today is cooler too so I'm sure that helps. I have been drinking water by the gallon and I think that is helping too.
I woke up feeling really sore this morning and I am actually wondering if drinking so much water has been akin to a cleanse or a detox. If so, that is probably a good thing.
I chilled out indoors all day yesterday and just read blogs and novels. I napped a little and then at night, I ate a huge salad and rented the movie "Push." I thought it was ok. I always like Dakota Fanning so that was a bonus. The back of the DVD intrigued me because the characters in the movie all had different telepathic powers and I am fascinated by that idea. Overall, I would give the movie about a B- but I was entertained.
I got a lot of sleep although I am still having crazy dreams. Once I got going, I headed out to try Nia again. I thought it was a nice class and I enjoyed all the dancing. I think my favorite part was when we just got to free-dance. The class was also a good workout and I was sweaty at the end. This time it did not make me feel sick. The room was nice and cool, we warmed up and cooled down and I drank a lot of water. I think it was good for me to get my heart going.
Today I am grateful to find my body at a comfortable temperature again.
I woke up feeling really sore this morning and I am actually wondering if drinking so much water has been akin to a cleanse or a detox. If so, that is probably a good thing.
I chilled out indoors all day yesterday and just read blogs and novels. I napped a little and then at night, I ate a huge salad and rented the movie "Push." I thought it was ok. I always like Dakota Fanning so that was a bonus. The back of the DVD intrigued me because the characters in the movie all had different telepathic powers and I am fascinated by that idea. Overall, I would give the movie about a B- but I was entertained.
I got a lot of sleep although I am still having crazy dreams. Once I got going, I headed out to try Nia again. I thought it was a nice class and I enjoyed all the dancing. I think my favorite part was when we just got to free-dance. The class was also a good workout and I was sweaty at the end. This time it did not make me feel sick. The room was nice and cool, we warmed up and cooled down and I drank a lot of water. I think it was good for me to get my heart going.
Today I am grateful to find my body at a comfortable temperature again.
Friday, July 17, 2009
Coping
Over the last few months I have been keeping the overall tone of this blog pretty positive but I guess everyone has to unload sometimes...
The last few days I have been finding an urge to write angsty poetry. It seems there are things on my mind. The biggest thing has been poor sleep. I keep having nightmares and restless sleep. Last night, my nightmare woke me up but I couldn't even remember it. I felt really sick too. I was sore, nauseaous and dizzy but the worst part was that I felt parched. Even my skin felt hot and dry. I drank a ton of water but I couldn't get the sand paper feeling out of my mouth. When I got up today, it was still there.
When I helped to set up therapeutic yoga, I was roasting hot. During class, I had to get up three times to drink glasses of cold water. After class, I went out to lunch with the group at a Thai restaurant. I finally found relief in the air conditioning. I drank a Thai iced tea and ate a cool salad and I started to feel a bit better. Right now, I am sitting in my cool living room drinking ice water. I'm tired but I feel so much better.
I guess no matter how well a person adjusts to having MS, there are still bad days. I have had a few lately. It is still a struggle not knowing from one day to the next how I will feel. The headaches and nausea seem to come frequently. I suspect the heat that has made me irritable and sleepless at times. Yesterday I found myself in tears about the MS for the first time in a long time. First, I cried in the afternoon after trying to puke before I had to go teach yoga. I couldn't even get the relief of vomiting because nothing came up but I felt hot and horrible. I was so frustrated and when I first got to the studio, I still felt warm and dizzy. Then, last night when I woke up feeling awful, I cried again. I almost never cry from the physical discomfort anymore, I get upset about needing to go on with my plans when I feel lousy. I also get upset when I can't do what I want to do.
Last night, I got upset worrying about what I would do if I got really sick while my husband and my dog are camping. I can't call him, not that it even matters. I have family in abundance nearby. What I did remember is that I usually keep my phone and my insurance card downstairs when I sleep. I realized that if I woke up ill and couldn't handle the stairs, I would have serious problems. This is actually very far-fetched. Even at my sickest, I have handled the stairs on my bottom. I realize there is no real problem here but the idea freaked me out when I was feeling sick. The good thing is, I rarely entertain this sort of "what if" anymore. Today I know I will be fine but I will go to bed with the phone by me for reassurance.
On a more positive note, I am coming around a bit on the facebook thing. Lately I have been able to find a whole bunch of relatives I never even knew about. One of my relatives even has a genealogy page where I was able to learn more about the family history. As I find relatives, I have been making new "friends" and many of them have been adding new pieces to the family puzzle. I have been keeping some notes as I try to sort it all out. I love research projects :)
I am looking forward to a few more weeks off before I have to really start work. Next week my husband and I are going to visit his family in California. We are going to the beach and I am very excited. I think it will be cooler there and that may help me feel better.
Today I am grateful for the life I have and the people who make it richer.
The last few days I have been finding an urge to write angsty poetry. It seems there are things on my mind. The biggest thing has been poor sleep. I keep having nightmares and restless sleep. Last night, my nightmare woke me up but I couldn't even remember it. I felt really sick too. I was sore, nauseaous and dizzy but the worst part was that I felt parched. Even my skin felt hot and dry. I drank a ton of water but I couldn't get the sand paper feeling out of my mouth. When I got up today, it was still there.
When I helped to set up therapeutic yoga, I was roasting hot. During class, I had to get up three times to drink glasses of cold water. After class, I went out to lunch with the group at a Thai restaurant. I finally found relief in the air conditioning. I drank a Thai iced tea and ate a cool salad and I started to feel a bit better. Right now, I am sitting in my cool living room drinking ice water. I'm tired but I feel so much better.
I guess no matter how well a person adjusts to having MS, there are still bad days. I have had a few lately. It is still a struggle not knowing from one day to the next how I will feel. The headaches and nausea seem to come frequently. I suspect the heat that has made me irritable and sleepless at times. Yesterday I found myself in tears about the MS for the first time in a long time. First, I cried in the afternoon after trying to puke before I had to go teach yoga. I couldn't even get the relief of vomiting because nothing came up but I felt hot and horrible. I was so frustrated and when I first got to the studio, I still felt warm and dizzy. Then, last night when I woke up feeling awful, I cried again. I almost never cry from the physical discomfort anymore, I get upset about needing to go on with my plans when I feel lousy. I also get upset when I can't do what I want to do.
Last night, I got upset worrying about what I would do if I got really sick while my husband and my dog are camping. I can't call him, not that it even matters. I have family in abundance nearby. What I did remember is that I usually keep my phone and my insurance card downstairs when I sleep. I realized that if I woke up ill and couldn't handle the stairs, I would have serious problems. This is actually very far-fetched. Even at my sickest, I have handled the stairs on my bottom. I realize there is no real problem here but the idea freaked me out when I was feeling sick. The good thing is, I rarely entertain this sort of "what if" anymore. Today I know I will be fine but I will go to bed with the phone by me for reassurance.
On a more positive note, I am coming around a bit on the facebook thing. Lately I have been able to find a whole bunch of relatives I never even knew about. One of my relatives even has a genealogy page where I was able to learn more about the family history. As I find relatives, I have been making new "friends" and many of them have been adding new pieces to the family puzzle. I have been keeping some notes as I try to sort it all out. I love research projects :)
I am looking forward to a few more weeks off before I have to really start work. Next week my husband and I are going to visit his family in California. We are going to the beach and I am very excited. I think it will be cooler there and that may help me feel better.
Today I am grateful for the life I have and the people who make it richer.
Thursday, July 16, 2009
Nightmare
I have dreamed of you since we met.
I dream in buried fears.
We are seperated--
You won't talk to me.
I go on--
Less than whole
But I go on.
I survive but I am sad.
I am so sad about the idea
That you might not always be beside me.
Last night I had a nightmare
This time you were dead.
Like in my other dreams--
I lived on.
But inside I was torn to shreds.
At times I forgot you were gone
Only to return to the reality
That I could no longer see you,
That I could not hear your voice.
I cried and cried
But you were truly gone--
Funny how our deepest fears find us,
Even in slumber.
Sleep is no bliss
Laced in fright.
I awake to find you by my side
I am relieved.
I slumber again
Only to find I am back in the land of nightmares.
I dream in buried fears.
We are seperated--
You won't talk to me.
I go on--
Less than whole
But I go on.
I survive but I am sad.
I am so sad about the idea
That you might not always be beside me.
Last night I had a nightmare
This time you were dead.
Like in my other dreams--
I lived on.
But inside I was torn to shreds.
At times I forgot you were gone
Only to return to the reality
That I could no longer see you,
That I could not hear your voice.
I cried and cried
But you were truly gone--
Funny how our deepest fears find us,
Even in slumber.
Sleep is no bliss
Laced in fright.
I awake to find you by my side
I am relieved.
I slumber again
Only to find I am back in the land of nightmares.
Wednesday, July 15, 2009
Burning
I'm smoldering.
Burning from the inside out--
Even my skin is hot.
I boil with irritation.
I have worked hard,
Fought to long
Sifting through the soil of my being
Discovering what I am not
So I can know what I am.
But it would take more than the pitiful scraping of my hands--
It would take an earth-mover
To change all my realities to make them suit me.
Every day I shove aside those thoughts that plague me,
The things that trouble me
But in my dreams, I cannot escape them.
I lie awake reflecting then--
My skin seems to crawl
I'm scalding.
The nagging in my mind,
An itch along my dermis.
You come to me for hope and inspiration
But I cannot always be that
Even saints are tried
And I am no saint.
I will not apologize
For the corners of my being
Where darkness still lurks--
The shadow drives my change.
My inspiration
Seems to spring
From a well of angst.
Only in the seperation of me from the other
Do I really know me--
Burning from the inside out--
Even my skin is hot.
I boil with irritation.
I have worked hard,
Fought to long
Sifting through the soil of my being
Discovering what I am not
So I can know what I am.
But it would take more than the pitiful scraping of my hands--
It would take an earth-mover
To change all my realities to make them suit me.
Every day I shove aside those thoughts that plague me,
The things that trouble me
But in my dreams, I cannot escape them.
I lie awake reflecting then--
My skin seems to crawl
I'm scalding.
The nagging in my mind,
An itch along my dermis.
You come to me for hope and inspiration
But I cannot always be that
Even saints are tried
And I am no saint.
I will not apologize
For the corners of my being
Where darkness still lurks--
The shadow drives my change.
My inspiration
Seems to spring
From a well of angst.
Only in the seperation of me from the other
Do I really know me--
Tuesday, July 14, 2009
Flowers for Herrad
Well I have finished the latest painting at last. This one was inspired by the virtual flowers that Herrad sent me the other day. The photo is from Herrad and the watercolor is my interpretation. If you have never visited Herrad's blog, please do, it rocks!
Monday, July 13, 2009
Journal 6/13
I have another headache so I will keep this short to avoid eye-strain.
Friday, after I posted on my blog I went to help out with an event at a fitness store to promote the yoga studio where I work. I was feeling good at the time so when I got there, I tried the Nia (combo of dance, tai chi and yoga) class that was going on. It was very fun but it made my heart race. A little later, my head started to pound and then I got very nauseous. I thought I might get sick at the store but I managed to make it home to cool off. Once I cooled off, I felt a little better but still not great.
On Saturday morning, I felt almost like myself again so I got to have a little fun. My husband and I went to Fort Collins to check out the CSU experimental gardens. They had tons of plants and flowers that grow well in Colorado. We got some great ideas for our garden. I also got some ideas for future paintings I might make.
Speaking of paintings... I am working on a really cool one that I'll post a photo of this week. I hope it will be my best yet. It has a lot of detail so it is taking a while to complete, but so far, I am very pleased.
Yesterday I also felt pretty good so I did some more fun stuff. My husband and I went out for brunch. Later in the afternoon, I got to take a yoga class in the park from the owner from my studio. It was a great class. Near the end, it started to rain a bit. I think that was the first time I have done yoga in the rain. It was cool. When class ended, I went to get my first MRI in six months. I have my fingers crossed that I will have no new issues. As long as things don't get worse, I plan to stay off DMDs.
Unfortunately, I am not feeling well again today. After a good weekend, I hoped that last week's symptoms were behind me but I woke up about 4:00 am feeling very nauseous. The feeling went away after I got up but I was left with another pounding headache and my whole body feels sore. I slept a lot but I'm still tired. I want to go to yoga but I will have to see how I feel later. I have two classes to teach tomorrow and I want to make sure I'm at my best for those. I wish I could figure out what has been making me ill. I can tell it is related to my immune system because I have a lymph node under my arm that keeps swelling when I feel sick but I can't tell if the problem is eye-strain, heat or something else entirely. Every now and then, I suspect diet but I have tried going dairy and gluten-free before and it didn't seem to make a difference. This hardly seems like a problem for my doctor since I am on vacation and I have the time to rest so I just hope that I will feel ok from one day to the next...
On a positive note, even with the inconveniences, I am really enjoying my summer. I am getting to do the things I want to. The main things I want to do are pretty mellow aside from yoga (that's mellow too but physically demanding at times). I am finding plenty of time to read, paint, embroider and write. Today I am grateful to have these opportunities in abundance.
Friday, after I posted on my blog I went to help out with an event at a fitness store to promote the yoga studio where I work. I was feeling good at the time so when I got there, I tried the Nia (combo of dance, tai chi and yoga) class that was going on. It was very fun but it made my heart race. A little later, my head started to pound and then I got very nauseous. I thought I might get sick at the store but I managed to make it home to cool off. Once I cooled off, I felt a little better but still not great.
On Saturday morning, I felt almost like myself again so I got to have a little fun. My husband and I went to Fort Collins to check out the CSU experimental gardens. They had tons of plants and flowers that grow well in Colorado. We got some great ideas for our garden. I also got some ideas for future paintings I might make.
Speaking of paintings... I am working on a really cool one that I'll post a photo of this week. I hope it will be my best yet. It has a lot of detail so it is taking a while to complete, but so far, I am very pleased.
Yesterday I also felt pretty good so I did some more fun stuff. My husband and I went out for brunch. Later in the afternoon, I got to take a yoga class in the park from the owner from my studio. It was a great class. Near the end, it started to rain a bit. I think that was the first time I have done yoga in the rain. It was cool. When class ended, I went to get my first MRI in six months. I have my fingers crossed that I will have no new issues. As long as things don't get worse, I plan to stay off DMDs.
Unfortunately, I am not feeling well again today. After a good weekend, I hoped that last week's symptoms were behind me but I woke up about 4:00 am feeling very nauseous. The feeling went away after I got up but I was left with another pounding headache and my whole body feels sore. I slept a lot but I'm still tired. I want to go to yoga but I will have to see how I feel later. I have two classes to teach tomorrow and I want to make sure I'm at my best for those. I wish I could figure out what has been making me ill. I can tell it is related to my immune system because I have a lymph node under my arm that keeps swelling when I feel sick but I can't tell if the problem is eye-strain, heat or something else entirely. Every now and then, I suspect diet but I have tried going dairy and gluten-free before and it didn't seem to make a difference. This hardly seems like a problem for my doctor since I am on vacation and I have the time to rest so I just hope that I will feel ok from one day to the next...
On a positive note, even with the inconveniences, I am really enjoying my summer. I am getting to do the things I want to. The main things I want to do are pretty mellow aside from yoga (that's mellow too but physically demanding at times). I am finding plenty of time to read, paint, embroider and write. Today I am grateful to have these opportunities in abundance.
Friday, July 10, 2009
Therapeutic yoga class and other stuff
I got my start teaching at Harmony Yoga about a year ago. I found out about Harmony through my newly diagnosed workshop. A woman in my group went to Harmony for therapeutic yoga and recommended the class. The class was/is geared toward people with auto-immune disorders like MS, Lupus and Rheumatoid Arthritis. It is a great class at a level that even those in wheelchairs can participate in. I have loved this class since I started going last May. Early in my MS, many folks in the class gave me the support and advice I needed to get started on living! my life with MS. It also gave me the opportunity to meet the owner of Harmony and to get involved at the studio.
While I was teaching school this year, I could never go to the class but now that summer is here, I get to go back and assist. I have gone twice now and I still really enjoy it. I admire the way the class offers something for everyone there. I find the environment supportive and nurturing. I wish there were more opportunities like this one for people with MS.
Today in class, I found myself contrasting this group and the "thirtysomething/newly diagnosed" MS group I attend once a month. The therapeutic group is composed mostly of people with MS. I am the youngest in the class. The other members have had MS 10+ years. Most of them have some difficulties with mobility. Several have walkers or canes and others limp or have a part of their body that no longer works the way it used to. Despite, these challenges, I have rarely encountered such a warm and positive group of people. Participating in the group does a few things for me. Assisting gives me a chance to help others who have helped me. Taking the class teaches and nourishes me. The class also gives me a lens into some of my possible futures. I wonder, will I lose some of my mobility? Will I relapse at some point and fail to come back all the way? Yet despite these questions, this group gives me hope because the people in class seem to live full, happy and productive lives.
In my MS support group, everyone except me is on a DMD( Disease Modifying Drug or Interferon). Everyone seems to have their good and bad days but they all are still working full time. Most of the folks in my therapeutic group seem to be retired. Many of them no longer have relapses but seem to have moved into the more progressive stages of MS. Most of them have tried the DMDs but for one reason or another, they no longer take them. The newly diagnosed seem more anxious and uncertain about where MS will take them. The folks in the therapeutic class seem to have been there, done that. I really admire the positivity in the therapeutic group. I really empathize with the other people in my newly diagnosed group. Both groups make me think and reflect on where I am at with my MS.
Now another topic... I am warming up a little to facebook. Another "long-lost" relative found me and now I am discovering more cousins I never knew existed. I never realized there were so many Tizers. I sent out a bunch of friend requests today (something I never do) just so I could connect with some of these people. I am especially excited to note that most of them live in Israel. I have always wanted to go there and now I have an even better reason and a place to stay.
While I was teaching school this year, I could never go to the class but now that summer is here, I get to go back and assist. I have gone twice now and I still really enjoy it. I admire the way the class offers something for everyone there. I find the environment supportive and nurturing. I wish there were more opportunities like this one for people with MS.
Today in class, I found myself contrasting this group and the "thirtysomething/newly diagnosed" MS group I attend once a month. The therapeutic group is composed mostly of people with MS. I am the youngest in the class. The other members have had MS 10+ years. Most of them have some difficulties with mobility. Several have walkers or canes and others limp or have a part of their body that no longer works the way it used to. Despite, these challenges, I have rarely encountered such a warm and positive group of people. Participating in the group does a few things for me. Assisting gives me a chance to help others who have helped me. Taking the class teaches and nourishes me. The class also gives me a lens into some of my possible futures. I wonder, will I lose some of my mobility? Will I relapse at some point and fail to come back all the way? Yet despite these questions, this group gives me hope because the people in class seem to live full, happy and productive lives.
In my MS support group, everyone except me is on a DMD( Disease Modifying Drug or Interferon). Everyone seems to have their good and bad days but they all are still working full time. Most of the folks in my therapeutic group seem to be retired. Many of them no longer have relapses but seem to have moved into the more progressive stages of MS. Most of them have tried the DMDs but for one reason or another, they no longer take them. The newly diagnosed seem more anxious and uncertain about where MS will take them. The folks in the therapeutic class seem to have been there, done that. I really admire the positivity in the therapeutic group. I really empathize with the other people in my newly diagnosed group. Both groups make me think and reflect on where I am at with my MS.
Now another topic... I am warming up a little to facebook. Another "long-lost" relative found me and now I am discovering more cousins I never knew existed. I never realized there were so many Tizers. I sent out a bunch of friend requests today (something I never do) just so I could connect with some of these people. I am especially excited to note that most of them live in Israel. I have always wanted to go there and now I have an even better reason and a place to stay.
Thursday, July 9, 2009
Fresh Air Fund
One of my readers asked me to post this so here it is.
Begin message: The Fresh Air Fund is looking for runners and sponsors to join our Fresh Air Fund-Racers team for the NYC Half-Marathon on August 16th. This is a great way to participate in NYC's premier summer road race while helping Fresh Air Fund children. Website:
http://freshair.org/racers
Last summer's NYC Half-Marathon was a huge success and the Fresh Air Fund-Racers raised more than $125,000. We are also still in need of Friendly Town hosts for next month. Host families open their hearts and home to a NYC child who would not otherwise have the opportunity to escape the hot, crowded city streets.
Check out the site to see if you might be able to help out some kids!
Nadja
Begin message: The Fresh Air Fund is looking for runners and sponsors to join our Fresh Air Fund-Racers team for the NYC Half-Marathon on August 16th. This is a great way to participate in NYC's premier summer road race while helping Fresh Air Fund children. Website:
http://freshair.org/racers
Last summer's NYC Half-Marathon was a huge success and the Fresh Air Fund-Racers raised more than $125,000. We are also still in need of Friendly Town hosts for next month. Host families open their hearts and home to a NYC child who would not otherwise have the opportunity to escape the hot, crowded city streets.
Check out the site to see if you might be able to help out some kids!
Nadja
Wednesday, July 8, 2009
Edits and Revisions
Life can be a lot like writing. We remember and learn as we go. We continually revise and edit our visions of ourselves and others. We learn from past experiences and adjust as needed.
Right now I am getting ready to edit the first chapter of my memoir. I am curious to look back at the person I was when I wrote it. I am interested to see how I have changed and grown. I actually wonder if I will read the whole thing and toss out half. That is how it often goes. We think we know something, feel certain and then look back on it and wonder what the hell we were thinking.
I hope to find some perspective in looking back. I think that my life continues to improve but on days like today, I need a little reminder.
I am a little frustrated. I slept poorly, plagued by nightmares that reoccured each time I slept. I feel sick. It started on the weekend with achy joints and by Monday, progressed to vertigo. I felt better yesterday morning after loads of sleep but by afternoon, I felt exhausted and nauseous again. Today I feel the same although I slept about twelve hours. I wanted to go to yoga but right now it seems like too much. A little of my old guilt is creeping in and that voice in the back of my head is telling me I should be doing something even though I have nothing I need to do.
This is where I revise. I rewrite the script that is filled with guilt to one of acceptance and gratitude. I accept that some days I must just rest and recuperate, even if it is inconvenient. I am grateful because I'm not completely incapacitated. I am grateful because I don't have any commitments and there is no better time to just rest.
Now I will go and edit my manuscript and perhaps I will learn a little more about myself and my journey in the process.
Right now I am getting ready to edit the first chapter of my memoir. I am curious to look back at the person I was when I wrote it. I am interested to see how I have changed and grown. I actually wonder if I will read the whole thing and toss out half. That is how it often goes. We think we know something, feel certain and then look back on it and wonder what the hell we were thinking.
I hope to find some perspective in looking back. I think that my life continues to improve but on days like today, I need a little reminder.
I am a little frustrated. I slept poorly, plagued by nightmares that reoccured each time I slept. I feel sick. It started on the weekend with achy joints and by Monday, progressed to vertigo. I felt better yesterday morning after loads of sleep but by afternoon, I felt exhausted and nauseous again. Today I feel the same although I slept about twelve hours. I wanted to go to yoga but right now it seems like too much. A little of my old guilt is creeping in and that voice in the back of my head is telling me I should be doing something even though I have nothing I need to do.
This is where I revise. I rewrite the script that is filled with guilt to one of acceptance and gratitude. I accept that some days I must just rest and recuperate, even if it is inconvenient. I am grateful because I'm not completely incapacitated. I am grateful because I don't have any commitments and there is no better time to just rest.
Now I will go and edit my manuscript and perhaps I will learn a little more about myself and my journey in the process.
Tuesday, July 7, 2009
For the newly diagnosed and struggling MSer
Lately I have read a couple blogs that made me reflect on my own experiences when I was newly diagnosed with MS. Mike wrote about "Why I cry listening to the radio." Robert Parker wrote about the major challenges he is currently suffering. Please drop by their blogs and send them some love. Below are portions of the comments I left for Mike and Robert that I wanted to share because I hope it may help other struggling MSers.
I was diagnosed in April of 2008 and I can tell you it does get easier. I used to think that maybe MS would lead me to lose my job, my house and many of the things I cared about. It has not brought any of these losses into my life but MS has taught me to slow down and prioritize. For a while I was so sick and anxious I was afraid I might have to quit my job as a teacher. Now I have finished a full school year with MS and it was ok.
Since my diagnoses, I also completed 200 hours of yoga teacher training and I am now a yoga teacher (a big dream realized). You might think I could do all this because I have mild MS but I actually had 3 relapses in the space of a year so it has not been easy. As my mental state has improved and I have learned my limits, my health has improved. Don't be afraid to rest or ask for help. Don't be afraid to cry. In the end I think you will smile more if you allow yourself to grieve. Being diagnosed makes you face your own mortality. It is a death itself but it does get easier. Hang in there!
In my first year with MS I experienced almost everything I see newly diagnosed MSers talking about. I had a panic attack every day and often puked before work. I got so depressed that I felt like I didn't want to live anymore. I couldn't even think of a reason why I bothered.
I had a driving issue very recently as well. Both my arms went numb and I got stuck at the airport too panicked to even drive. I was terrified. I thought I might have to rush to the ER. In time, it went away.
These days I take Klonopin for my anxiety attacks. It really helps. I still have bad health days too. Yesterday I stayed in bed all day because of vertigo. The difference is that now this causes only minimal panic because time has taught me that I will find a way.
I can also relate to the idea of thinking you might lose something you love. My first question after my diagnosis was: "Will I still be able to become a yoga teacher?" Sometimes I still get dizzy in yoga or can't balance but I just back off and rest when this happens. I know I still may lose huge parts of my asana (physical) practice but I trust that even in a wheelchair, I can do something. Life as you know it may be over after an MS diagnoses but that does not mean that other great opportunities do not await you. MS has really changed my life but it has also given me "gifts" I could never imagine.
Hang in there. You will find a way, it just may take time. It probably took me a year before I finally could look ahead and enjoy each day again. My therapist said that such things teach us to truly be present so I focus on one day at a time and try to make the most of it. The uncertainty was what caused my anxiety and I found the only remedy was to take each day, each minute as it comes. You will be ok.
I was diagnosed in April of 2008 and I can tell you it does get easier. I used to think that maybe MS would lead me to lose my job, my house and many of the things I cared about. It has not brought any of these losses into my life but MS has taught me to slow down and prioritize. For a while I was so sick and anxious I was afraid I might have to quit my job as a teacher. Now I have finished a full school year with MS and it was ok.
Since my diagnoses, I also completed 200 hours of yoga teacher training and I am now a yoga teacher (a big dream realized). You might think I could do all this because I have mild MS but I actually had 3 relapses in the space of a year so it has not been easy. As my mental state has improved and I have learned my limits, my health has improved. Don't be afraid to rest or ask for help. Don't be afraid to cry. In the end I think you will smile more if you allow yourself to grieve. Being diagnosed makes you face your own mortality. It is a death itself but it does get easier. Hang in there!
In my first year with MS I experienced almost everything I see newly diagnosed MSers talking about. I had a panic attack every day and often puked before work. I got so depressed that I felt like I didn't want to live anymore. I couldn't even think of a reason why I bothered.
I had a driving issue very recently as well. Both my arms went numb and I got stuck at the airport too panicked to even drive. I was terrified. I thought I might have to rush to the ER. In time, it went away.
These days I take Klonopin for my anxiety attacks. It really helps. I still have bad health days too. Yesterday I stayed in bed all day because of vertigo. The difference is that now this causes only minimal panic because time has taught me that I will find a way.
I can also relate to the idea of thinking you might lose something you love. My first question after my diagnosis was: "Will I still be able to become a yoga teacher?" Sometimes I still get dizzy in yoga or can't balance but I just back off and rest when this happens. I know I still may lose huge parts of my asana (physical) practice but I trust that even in a wheelchair, I can do something. Life as you know it may be over after an MS diagnoses but that does not mean that other great opportunities do not await you. MS has really changed my life but it has also given me "gifts" I could never imagine.
Hang in there. You will find a way, it just may take time. It probably took me a year before I finally could look ahead and enjoy each day again. My therapist said that such things teach us to truly be present so I focus on one day at a time and try to make the most of it. The uncertainty was what caused my anxiety and I found the only remedy was to take each day, each minute as it comes. You will be ok.
Monday, July 6, 2009
Vertigo
The one thing I dread most about MS is my bouts with vertigo. I have not had a bad one since the fall but today I woke up and rolled over to find myself spinning. I still managed to get out of the house to an early appointment but I felt rather disoriented. Unfortunately, when I got home it came back. I tried to ignore it but after running to the bathroom three times thinking that I would puke, I gave in and laid down. I still felt bad so I finally took some Dramamine. That of course put me to sleep and I slept through everything. Now I'm up but I still don't feel all that well (vision is cloudy, stomach upset and slight headache). My hope is that I will sleep it off tonight.
I guess the good news is that I had no really pressing obligations although I got bent out of shape about not doing the things I wanted to do. I am hoping for a better day tomorrow.
My next MRI is on Sunday so I'm keeping my fingers crossed that everything is still A-Ok. Overall I have been feeling pretty good lately so I think things will be fine.
I guess the good news is that I had no really pressing obligations although I got bent out of shape about not doing the things I wanted to do. I am hoping for a better day tomorrow.
My next MRI is on Sunday so I'm keeping my fingers crossed that everything is still A-Ok. Overall I have been feeling pretty good lately so I think things will be fine.
Thursday, July 2, 2009
Artistic Endeavors
Lately I have been inspired to create a lot of different art. Here I have posted my latest watercolor of some Pansies. The other photo is a rose patch I just designed and embroidered for a jacket refashion I am working on. Some of you know I have also been writing a bit of poetry. My latest poem was posted yesterday and is also featured this week on the Carnival of MS Bloggers. Be sure to follow the link and check out the other writers/artists featured this week.
Wednesday, July 1, 2009
Finding the Muse
I lay in the darkness but sleep eludes me.
A clutter of useless thought crowds my mind,
These worries wash me in discontent.
But there is no need for worry--
I shove aside all concerns and center my mind.
I escape this husk
Travelling through visions of creation
In this state, everything I imagine, I can create.
It comes to me within these visions--
Time is key
Take the time,
I can manifest each thing I imagine
Results become unimportant.
I am adrift in sensory images.
My hands caress this design I have crafted from old things made new
I feel the texture of the fabric beneath my fingers.
I am not troubled by the distance of my vision
I can see now that I will create this thing
It does not matter when
It does not matter how long it takes
Just the existence of each artistic vision
Ensures I will somehow create what I imagine
There are no words to describe it
Behind my closed eyes, it is entirely clear.
I can wait--
I just must remember the things I have fancied,
As I drift toward slumber
They warm and inspire me--
A clutter of useless thought crowds my mind,
These worries wash me in discontent.
But there is no need for worry--
I shove aside all concerns and center my mind.
I escape this husk
Travelling through visions of creation
In this state, everything I imagine, I can create.
It comes to me within these visions--
Time is key
Take the time,
I can manifest each thing I imagine
Results become unimportant.
I am adrift in sensory images.
My hands caress this design I have crafted from old things made new
I feel the texture of the fabric beneath my fingers.
I am not troubled by the distance of my vision
I can see now that I will create this thing
It does not matter when
It does not matter how long it takes
Just the existence of each artistic vision
Ensures I will somehow create what I imagine
There are no words to describe it
Behind my closed eyes, it is entirely clear.
I can wait--
I just must remember the things I have fancied,
As I drift toward slumber
They warm and inspire me--
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