Women's Getaway was fun!!!

19 d ays till Camp.

I will write more later. We had to rest a lot on Monday. Also Ashwin Madia did win the DFL endorsement to run for US Congress. It was a thrill to be there for that event. Now I will have to see what they want me to do to help get him elected..

We have water exercise I will write more later. Yesterday we also had Rosa with us for several hours - oh did we have fun!!

Emma and Mary

Water exercise was the main event of the day. Emma and i were glad to be here and not out in the weather when the snow/sleet started. You could hear the window and ice crystals hit the window glass. Brr. Greg said the drive home from work was slow. Water and other place ice on the road way. We will see what tomorrow brings.

Tomorrow I see the lung specialist which will be good. Just a check up but having some problems so am interested to talk to her especially about my medication. She is a dog lover. She likes Emma a lot. She moved to Edina which is further from us then the Plymouth office but we think it is worth the drive to see her. I have my map with directions ready. I also have my list of questions.

I am so nervous about getting Emma out for bathroom needs at this Getaway. We checked it out and it is block after block of pavement. I will let you know how we dealt with the situation.

Emma and I are off to bed. I packed the camera for the weekend my goal to also get more photos of Emma.

Take care now. Have a good weekend.

Go Twins!! Last year at the ball park.

Thursday

I had a good cry this afternoon. At the Wed session my Dr. Schapiro a wonderful MS specialist announced he is retiring at the end of this year from private practice. He will concentrate on his work as a speaker and in teaching about MS. That has been part of his mission throughout his career. A very touching letter from him was read prior to it being mailed to patients. He got all choked up and the tears flooded my eyes.

What you have to understand is after 13 years of tests, odd symptoms, rude doctors, and so on - I finally was able to see him. I called and they said there was a two year wait. I said fine I will wait two years. After 15 years what is two more? The receptionist was flabergasted. I told her I met him at a seminar and he agreed to see me. I waited many months and did see him indeed.

The last doctor a neurologist that I saw before him said I had a back injury and that is why i couldn't walk and sent me to neurosurgeon. Though by then I had most the symptoms of MS it could not be confirmed on her horrible MRI. She decided it was all psychological. She made that clear to the neurosurgeon. When he saw my back studies he said Let me look at you - you do NOT need surgery. I would NOT go back to that dr. I think your symptoms do look like MS. You need to see a specialist. Yeah by then I only had another six months to wait to see Schapiro.

The first thing Dr. Schapiro said to me - You have been through so much. No matter what this is if you want I will be your doctor. He ran a new MRI and I had two visits before he confirmed I did indeed have MS. He made the diagnosis. I thanked him. He still chuckles that most people don't say thank you about that diagnosis. But gosh at least I found a doctor who did not think I was crazy.

I could tell other stories about how kind he has been to me in various ways. Maybe over the year those will be shared. The other thing I thank him for is he was so delighted when I wanted to get a service dog. He thought it was great and was supportive. He adores Emma and tells me she is his favorite of all service dogs ever. I promise I will have a picture taken of him with Emma and I and post it.

Dr. Jonathan Calkwood will take over the clinic. He is already there both seeing MS patients but also seeing MS patients who need help with vision. He is a neuro-opthamologist or something like that. So he already has worked with me many times. He will become my main MS doctor now. He was there today also and reassured me that he will keep working with me. I can do the math though and know despite promises how could he possibly seel all his patients and all of Schapiro's. Since I already am seeing Dr. Calkwood I probably will be okay. He was so reassuring the tears came again.

I just couldn't cope with this tough disease without having a good team of doctors. The MS specialist being the most important for me.

I wish Dr, Schapiro well and am happy he has made a decision for his sake. He will be able to spend time with his wife, their grandchildren, children, and continue speaking/teaching both here in the US and internationally. We kidded him because recently he got to be the MS Doctor on a MS Cruise. That would be a neat way to work.

I think until he leaves they will continue to have the free sessions on Wed. It goes 1-2:30 and it is first a presentation by the two Doctors and then questions, and discussion. Today they talked about the role of your pharmacist, insurance issues and medicine came up also. The discussion was very interesting but a bit disheartening too. Due to the rising cost of medications, some drugs don't get covered or approved. Or not approved unless you first try other cheeper drugs even if they are NOT the same drug or even if the Dr. has good reasons why they selected the drug they did. It is very tough on the physicians and pharmacists trying to help patients.

Emma and I will try to go to as many of these sessions as we can. The issue always is how to get a ride home. I take Metro Mobility there but they NEVER have been able to take me home even if I wait. So I go if a friend can pick me up, or if Greg can pick me up. Greg had to bring me to his work so that is where I am typing this.
I brought a book and Emma and I have gone outside a few times. He works at a church so it is not a bad place to wait -- but gosh it is getting annoying to not be able to drive.

On the other side to all this is the reality for 8 years I have had one of the best MS Doctors in the World. He has written books, lectured all over the world, both spreading knowledge and also advocating for people with MS. His Mother had MS and he has spent his career helping others with MS. At the end of the year it will be time for him to change his focus off private practice. We will miss him but perhaps get to hear him speak at event.

Sometimes I worry I complain too much. Here are some reasons Emma and I are happy today:

1. We are almost to $500 in donations to Helping Paws. We are so pleased

2. MS women's Getaway is Friday. A few of us are starting the party early with lunch downtown and time to socialize or shop before we register for the getaway.

3. MS Camp is 25 days away.

4, I tried the new medication again today and so far it did not make me sick but YES it did lower the blood sugar. Let's see how it goes for the next few days.

5. My siblings and I are busy planning my Aunt's small birthday dinner. I got married on her birthday. Do you know at age 23 it never dawned on me that for the rest of her life my anniversary conflicts with her birthday? ha ha. She is sentimental about the exact date so most times we have to celebrate the anniversary at a different time.

Wow donations for Run and Romp are $375. One person I know gave $100 but did not want her name listed. Emma and I say thank you.

Here is the countdown.

MS WOMEN'S GETAWAY - 3 Days away!!!!

MS CAMP - See photos from last year below

AlSO - 21 days till my 30th Wedding Anniversary!!





We are off to water exercise - Thanks again for all the donations to helping Paws. It is not too late to donate if you wish. The web address is

https://www.active.com/donate/RunandRomp2008/MWeinan

Have a great day. Mary and Emma