OK, I confess. This entry isn't really about my dancing neurologist. I just like the title and since it is my blog, I'm allowed to use any title I want and I want to use The Dancing Neurologist.
Yesterday I had my second appointment at the Mellen Center for MS at Cleveland Clinic. We awoke to a fresh layer of snow and as a result decided to get an early start to Cleveland. We stopped for breakfast at the Waffle House, which in itself was almost worth the trip. Can you say scattered, smothered, covered and capped? If you don't know what that is, you need to find a Waffle House quickly!
I grew up surrounded by Waffle House restaurants. They have only recently popped up in our area north of the Mason-Dixon. I will say this, a Waffle House waitress without a southern drawl just isn't right! ( I wanted to say just "ain't" right for emphasis, but then I thought people would think me an illiterate moron, so I said isn't even though it just doesn't get the job done!)
By the time we finished our breakfast and were on the road, the snow had stopped and the sun was shining. It was a beautiful blue-sky day in Ohio.
We arrived at the Mellen Center much too early for my appointment and as a result we had about an hour to fill. Having spent the last hour sitting in the car, I decided that we should take a walk. Twenty degrees is still cold, even when the sun is shining so I admit our walk didn't last very long.
We stopped in at Citrus, the restaurant in the hotel in which we stayed the last time we were in Cleveland and chatted over a hot cup of coffee before heading back for my appointment.
The Mellen Center is a difficult place for me. When I am at home, living in my own cocoon, I don't have to constantly be reminded of the hatefulness of this disease. But there, at the Mellen Center, every wheelchair, every cane and every walker is like a beacon, a giant neon sign flashing the letters MS right in my face. I tried to position myself in the waiting area in such a way as to avoid the flashing neon signs but one lit up right beside me and caused me to quietly fall apart. When the dancing she-neuro called out my name, I had to wipe away silent tears as I stood to walk down the long corridor to her office. As we walked, she could see I was upset and kindly asked if I was OK. My mouth said I was fine. My head and my heart had other things to say.
The dancing neurologist seems to think I may be dealing with some depression. Seriously, how could I not be depressed? The very me that I am/was, was yanked up and blown apart in the wind like a dandelion. My photography and artwork, the very thing in which I find solace has been stolen from me. Sitting at the computer, editing photos and creating artwork now has to be limited to very small amounts of time. The sitting causes me to have a mushy brain. Since I have been limiting my time spent in the chair at my computer I am seeing some slight improvement. I will take anything I can get.
Sleep has been a challenge lately. I lie awake some nights until two or three o'clock in the morning. Before the MS, the thought of me having an anxiety attack would have been laughable. Last week I'm fairly certain that I had a full blown anxiety attack. It was not fun. It was justifiable. Not only am I dealing with the MS issues, I am also still in elevated-white-blood-cell-count limbo as well as dealing with some unexplainable "woman stuff".
I think I handle all of these changes fairly well most of the time, but once in a while I just have to be sad or angry about it all. I am only human.
The dancing neurologist, while trying to make me feel better told me how there are sixteen year old girls who have an MS attack and their lives are devastated by it forever. She made a point of letting me know that I am 49 and have held it at bay all this time. What she doesn't know is when you are young (and she is very young) that 49 might seem old. But to me, who has a mother who is 86, 49 still seems very young. I still have a lot of living to do. Don't misunderstand, I have no problem with the DN or her youth. She is very bright or she wouldn't be seeing patients at the Mellen Center nor would she have been the recipient of the Sylvia Lawry Physician Fellowship. I already have a great deal of respect for this young doctor. She was just trying to help me put things into perspective. I appreciate her candor.
I went to the hematologist last week in hopes of getting some answers concerning the elevated white blood cell count. Contrary to what I had hoped for, he felt me up again. At least this time I was emotionally prepared for the possibility. And honestly, I have had so many different people handling me over the last two weeks, that I feel like I should be the one getting paid! I won't know any results from the four blood tests that the hematologist ordered until the 21st of March.
There was good news as far as my lesions are concerned. There are no new lesions and the really nasty one in my neck does not enhance in the MRI. There are no new MS symptoms, I am still trying to overcome the ones that presented themselves in November around the time of the evil IV steroids.
Still no MS medicine as of yet. I may get into a research program at the Mellen Center so we are waiting for the blood work results before we start the medication. If the blood work results keep me from being in the research program, I will still be able to start the medication. We are just waiting to see if I can get into the research program before we start it.
I am trying to follow the dancing neurologist's suggestions for getting to sleep faster. We'll see...
All in all, I think I have felt a little better emotionally and physically over the last week. Again, I'll take it!
Yesterday I had my second appointment at the Mellen Center for MS at Cleveland Clinic. We awoke to a fresh layer of snow and as a result decided to get an early start to Cleveland. We stopped for breakfast at the Waffle House, which in itself was almost worth the trip. Can you say scattered, smothered, covered and capped? If you don't know what that is, you need to find a Waffle House quickly!
I grew up surrounded by Waffle House restaurants. They have only recently popped up in our area north of the Mason-Dixon. I will say this, a Waffle House waitress without a southern drawl just isn't right! ( I wanted to say just "ain't" right for emphasis, but then I thought people would think me an illiterate moron, so I said isn't even though it just doesn't get the job done!)
By the time we finished our breakfast and were on the road, the snow had stopped and the sun was shining. It was a beautiful blue-sky day in Ohio.
We arrived at the Mellen Center much too early for my appointment and as a result we had about an hour to fill. Having spent the last hour sitting in the car, I decided that we should take a walk. Twenty degrees is still cold, even when the sun is shining so I admit our walk didn't last very long.
We stopped in at Citrus, the restaurant in the hotel in which we stayed the last time we were in Cleveland and chatted over a hot cup of coffee before heading back for my appointment.
The Mellen Center is a difficult place for me. When I am at home, living in my own cocoon, I don't have to constantly be reminded of the hatefulness of this disease. But there, at the Mellen Center, every wheelchair, every cane and every walker is like a beacon, a giant neon sign flashing the letters MS right in my face. I tried to position myself in the waiting area in such a way as to avoid the flashing neon signs but one lit up right beside me and caused me to quietly fall apart. When the dancing she-neuro called out my name, I had to wipe away silent tears as I stood to walk down the long corridor to her office. As we walked, she could see I was upset and kindly asked if I was OK. My mouth said I was fine. My head and my heart had other things to say.
The dancing neurologist seems to think I may be dealing with some depression. Seriously, how could I not be depressed? The very me that I am/was, was yanked up and blown apart in the wind like a dandelion. My photography and artwork, the very thing in which I find solace has been stolen from me. Sitting at the computer, editing photos and creating artwork now has to be limited to very small amounts of time. The sitting causes me to have a mushy brain. Since I have been limiting my time spent in the chair at my computer I am seeing some slight improvement. I will take anything I can get.
Sleep has been a challenge lately. I lie awake some nights until two or three o'clock in the morning. Before the MS, the thought of me having an anxiety attack would have been laughable. Last week I'm fairly certain that I had a full blown anxiety attack. It was not fun. It was justifiable. Not only am I dealing with the MS issues, I am also still in elevated-white-blood-cell-count limbo as well as dealing with some unexplainable "woman stuff".
I think I handle all of these changes fairly well most of the time, but once in a while I just have to be sad or angry about it all. I am only human.
The dancing neurologist, while trying to make me feel better told me how there are sixteen year old girls who have an MS attack and their lives are devastated by it forever. She made a point of letting me know that I am 49 and have held it at bay all this time. What she doesn't know is when you are young (and she is very young) that 49 might seem old. But to me, who has a mother who is 86, 49 still seems very young. I still have a lot of living to do. Don't misunderstand, I have no problem with the DN or her youth. She is very bright or she wouldn't be seeing patients at the Mellen Center nor would she have been the recipient of the Sylvia Lawry Physician Fellowship. I already have a great deal of respect for this young doctor. She was just trying to help me put things into perspective. I appreciate her candor.
I went to the hematologist last week in hopes of getting some answers concerning the elevated white blood cell count. Contrary to what I had hoped for, he felt me up again. At least this time I was emotionally prepared for the possibility. And honestly, I have had so many different people handling me over the last two weeks, that I feel like I should be the one getting paid! I won't know any results from the four blood tests that the hematologist ordered until the 21st of March.
There was good news as far as my lesions are concerned. There are no new lesions and the really nasty one in my neck does not enhance in the MRI. There are no new MS symptoms, I am still trying to overcome the ones that presented themselves in November around the time of the evil IV steroids.
Still no MS medicine as of yet. I may get into a research program at the Mellen Center so we are waiting for the blood work results before we start the medication. If the blood work results keep me from being in the research program, I will still be able to start the medication. We are just waiting to see if I can get into the research program before we start it.
I am trying to follow the dancing neurologist's suggestions for getting to sleep faster. We'll see...
All in all, I think I have felt a little better emotionally and physically over the last week. Again, I'll take it!
(I should probably explain the whole dancing neurologist thing. On my first visit to the Mellen Center, during the course of conversation, the dancing she-neuro told us that when she began college she was going to be a dancer. Dancer turned neurologist. Now THAT is a career change! And I am better for her having made this choice. Who knows? One day she may read my blog and a little sucking up never hurt.)
2 comments:
Hi Carrie, I was glad to spend time with you here this morning peakin in on how you be (and yes I know the words should have said on how you are doing:-). I do so agree that ain't was the only word to fit your sentence in your post.
Glad you have no new issues showing up on your MRI and so on although I am fully aware this makes all you do have to live with no less in your eyes (or in mine), my friend, of all you are facing head on and living with.
As to your dr comment, first I am glad you have a dr you respect and seems to know her "stuff" well. However as your friend when I read her comparison I didn't appreciate her doing that to you...49 IS YOUNG and I do beleive they learn these practices in their bedside manners course in med school as the same words were told to my husband when he became paralyzed. Well at least you were 50 when this happened to you not 18...I remmember wanting to slap his drs face (the face of the very surgeon who paralyzed him was the mouth it came out of along with his other comment same day Double whammy day I store this day as in my chronicles "It's unfortunate you had this little set back." What??? little set back my... you know what!!! So anyway I wanted to slap him for the insensitivity of the words he spoke on many occasions and I still react harshly at heart to his comments so it struck a cord with me to read she had also used that comparison...a sort of try to make you grateful and see the positive in the years without it... The fact is you are living it with it now! Focus! they need to focus on the present and the patient! I simply don't think it works and should be deleted from beside manner 101. FIrst of all no patient should be compared to another certainly not in that rationnale. When she sees you it should be all about you and what you are feeling and experiencing but they are human beings and human beings are often callous (although I wanted to use the word stupid I didn't hahah) and all you can do is what you did... Let it roll away and write it to the page as you did, because the very fact is they are not you and though they treat you they have no idea what it TRULY is like because they aren't suffering the disease, or the illness or the paralysis or whatever it may be and are involved in it at the other end of the rainbow so to say. I wish you a good spring with nothing more to handle than you already have to handle and I wish you, topped, smothered, lucious Waffle house breakfasts with a waitress that has a southern draw that fits :-) I think of you always and pray your gift of art with your camera can be returned to you also because your talent is so superior and you deserve to be able to enjoy it even though you are 49 after all (I'm trying to make you smile by saying that and I hope you realized that..of course you did, but thought I better clarify my words)
God bless you my friend. I do believe that your blog in turn one day will be a great inspiration to another faced with what you are facing. You ability to tell it like it is is impressive.
Carolyn, thank you so much for sharing your experience. I know that in comparison to some, my illness is a walk in the park. No matter what your circumstances, there is always someone, somewhere who is worse off than you. Yet even that knowledge can't always ease your own internal pain can it? Thanks again for being such a good friend!
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