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At 1:43pm on November 11, 2009, Rebekah said…: Hi Kathy!
I didn't realize it was so long since I had checked my page! :)
I am on an upswing with my dystonia, so have been taking my dog out. It's great. It has been warm a couple days here, so that is a nice surprise so late in the year.
Wow, that must have been fun for your son. I love the simpsons. LOL :)
How are you doing? Any word on how your coverage will change??

At 5:08pm on October 7, 2009, Rebekah said…: I think we got those winds last night. It was very strong over this way. It's lovely and sunny today. I am back out in the cold, DX wise, as the osteopath I was seeing for free just withdrew the dx they were treating me for.
I'm doing the best I can. Never got the new chair, but have been doing a lot less and feeling a little better physically these past 2 weeks. But am off the meds I was taking so... :)
I'm so glad you're feeling better. Little by little, right?
God bless you, Kathy.

At 6:04pm on October 6, 2009, beka said…: Hi - Just wondering how you are doing ?? Diabetes Insipidus - go to www.diabetesinsipidus.org for information.. Just know that many are thinking of you.

beka

At 2:51pm on October 5, 2009, Rebekah said…: Yes, Dearborn! I used to drive through there daily on my way to work at an academy in Inkster. I love that Michigan! :) How are you? I pulled out some of my paintings last night, looking for some heavy sketch paper. Was nice to see them again. If I can, I'll post something for you to see. I'd love to see yours!
I hope you are doing better, Kathy!! I think of you often.

At 12:38am on September 26, 2009, Rebekah said…: Yes, you know the mind tends to the essentials first. So, when you're dealing with challenges sometimes creativity takes a back seat. You'll get it back soon, so don't you dare get rid of your paint! :)
Yes, hobbies. I am an artist. I almost wrote that I 'was' an artist, but the truth is I am still one, whether I produce or not. You're very right about about things being different. Staying ahead of changes and updating a practical plan are two things I reinforce to myself on a regular basis.
I used to live in Oak Park. Which suburb are you in? Michigan is soooo lovely. I'm glad your babies are singing again. I hope the trees take their sweet time fading this year. Let's hope for loads of color!
Hugs, Kathy... Tomorrow we get better :)

At 9:13am on September 25, 2009, Ellen S said…: Kathy, Hang in there sweetie. You mentioned DRD - I must have forgotten - are you dopamine responsive? I'm hoping the potassium helps you. Were the other electrolytes balanced properly as well?

At 6:17pm on September 24, 2009, Rebekah said…: Your bladdar is on release, so I'll assume you're not retaining fluids. I hate that this thing can do things to the heart. If you have swollen red blood cells (or too many) it can drive up your bp and hr.
I noticed you rote me a little over a week ago. How are things now?????

At 6:08pm on September 24, 2009, Rebekah said…: Oh Kathy, I'm sorry you're having such a tough struggle. I thought the surgery was to pose a solution to the bladdar. Why does this happen? Do you think you're having a reaction to surgucal meds or just the trauma?
Be well, honey! You can fight and survive this!! I'm praying for you. I'm thinking of you. I recognize the pain and sorrow involved in dealing with this and I'm sending you good vibes.
Is your staff rising to the challenge?

At 5:19pm on September 23, 2009, beka said…: I want you to CALL your internist and/or primary care physician...NOW..
They are on -call...So pick up the phone.. If you do not feel safe- go to your local ER...Where is your family in all this ??

beka

At 1:55am on September 14, 2009, Rebekah said…: How are you doing?

At 2:55pm on September 11, 2009, Rebekah said…: Canary, your bladder issues sound exactly like mine. Congratulations on getting a solution. Hope I can do the same soon. HUGS TO YOU. Wish we were closer, would love to come over and hang out with you.

At 10:24pm on September 8, 2009, Rebekah said…: A Year before your hmo provides it? Can't you get a letter from your doc to speed up the process? That's insane. Do they give you a loaner while you wait? I know what you mean about some not wanting to retrofit the home. I have experienced the same thing. Hopefully, your surgery went well! HOw are you??

At 5:11pm on September 8, 2009, Ellen S said…: Oh NO! Could it possibly have been a reaction to drugs given at surgery and not actually the stimulator??? Can you find out what meds they gave you before, during and after? Which ones are you taking now? Why don't you post to the Dystonia community and see what they say in case someone else has had an experience like yours. I'd do at least this much before calling it a failure, just in case. If they don't know what Dystonia is, they may have just missed a triggering medication. It sounds like Tardive Dyskinesia to me. I'm not a doc you know, but sure familiar with medical goofs like this one. BTDT. What do you think?

At 3:09pm on September 5, 2009, Ellen S said…: Oh Kathleen, I'm so glad to hear things are going so well!!! Hard to believe the doc hadn't heard of brain tissue donation. You are a hero...

At 8:05pm on September 3, 2009, Ellen S said…: Prayers for you my friend. Please let me know how it goes.

At 2:40pm on September 3, 2009, Ellen S said…: I'm hanging in there for now, and able to stay on top of the pain for most of the day. One of my docs is trying to get my records from afore mentioned hospital stay as he and his resident "posse" think they may have hit paydirt. Of course, the symptoms need to be agonizing for them to see anything, and a (potential) diagnosis will take days or weeks AND another doctor. They are listening though. And looking. Some of my blood work came back flagged as well, so the hunt continues. I still have hope, and that's what's got me smiling today. =)

How are you doing???

At 11:14am on August 10, 2009, Ellen S said…: Thx so much for the help. My heart murmur got much worse and is very uncomfortable thanks to all the garbage I was given and the days of unending high levels of head pain, but nobody told me angina, and I know I don't have a DVT. Yet anyway. Am moving about some now that I'm home and allowed to take my meds and eat properly. Doc prescribed this and other meds and never glanced at my file/chart OR my MRI or CT OR any of my blood work - NONE, so I left. Who would do that with a patient in status migrainous who hadn't had a bleed ruled out? Craziness. IMHO - It was an accident waiting to happen. I may try to post more about the whole ridiculous affair if I can figure out a way to do it and not get too emotional about it all. Maybe after I finally get some pain relief...

At 11:07pm on June 14, 2009, Deanna said…: A strong will seems to be part of so many of us with Dystonia. Us, non-stop women who go as fast as we can are now paused, s-l-o-w-e-d down. I am like you,slow is not me. I am used to being 'superwoman' and did not know dystonia would be my criptomite, so to speak.

As far as blogging, you can keep it to yourself, only your friends or open to everybody. You have the contols. I have journaled since I was about 8. My hand writing has always been horrible. Its so bad now, I can't even read my own writing in last years journal. I am able to type since, knock on wood, its not affected my hands yet. It has progressed alot in the past weeks, alot of pain. This is new for me. The doctor doubled my artane and so we will see how that goes.

As far as sleep, oh my, I take alot of meds and if it were not for that, would be a insomniac.Something that helps is Lyrcia which before I was diagnosed my previous Neuro gave me for nerve pain. It has the side affect of drowsiness. I also take advil p.m. to help me...and others.

I have been sleeping alot harder the past few weeks. I am not a napper, but have discovered laying down for a hour or so helps me get thru the rest of the day. Others I met a week ago at a dystonia support group said they end up drowsy by early afternoon and do nap. I assume our nerves spasm so much it tires us more.

I noticed you wrote me at 3 a.m. Wow, are you eastern time zone?

I love the flower. What is it! It's gorgeous!

Do you think maybe your bladder could be related to the dystonia? I have wondered that myself the past weeks. I had major bladder surgery a few year ago and anything I have had since has always also affected my bladder. I don't go as often anymore which is not like me... been wondering if I am retaining alot of fluid all over. I have gained about 20 lbs the last year as new meds added.

I hate so much this thing! I have a yard that needs mowed and clippings to the road. My husband said he will do it, yet it makes me so angry that I can't. I used to be able to!!! I pulled weeds only one hour last week and paid days for the little work I did. I don't want to sit on my butt at 41, I want to go full speed ahead as I always have.

Hey, I am going to run for now. Hope you sleep well and have a great day tomorrow.

Praying for myself and my sisters in pain, Deanna

At 10:19pm on June 14, 2009, Deanna said…: Can you explain a dystonia storm? I have done alittle search for it, but not sure I understand.I hurt every day and these last days have been worsening.

Have a good nights sleep...Deanna

At 4:00pm on June 10, 2009, Ellen S said…: Hi Canary3 - what a beautiful flower on your profile page! May I ask what it is?

I'm glad to see you've joined the Dystonia group. I have Dystonia. Fortunately, mine seems to react positively to Sinemet (dopamine). I also suffer from generalized Tardive Dystonic reactions. Not so fun, but manageable. The hardest part is explaining it to doctors who don't know me or understand it.

I hope you join right into a conversation. This is a really super group of people with lots of experience and support waiting for everyone. I hope you will soon feel right at home!