The Rose

This is my Yahoo blog, that i’ve copied over to WordPress. I’ve been gone from my Yahoo blog for  awhile now, so I thought an update would be nice. I’ve been quieter, and more settled, and really enjoying doing my quilting. I’ve made a special wallhanging quilt, that I gave to my HD clinic, as a gift, and here is a special poem that I wrote to go with it. I’ve also made a raffle quilt for Huntington’s Disease research. So I’ve been kind of absent from yahoo, and yet busy too. I’ve made a new blog page too, just for my raffle quilt, and for quilty stuff, and miscellaneous thoughts.

THE ROSE

I am a rose, that has no stem, but I am not alone.

Many leaves surround, and care for me, and help me through life’s storms.

I am a rose, and I have Huntington’s Disease,

And someday soon, yes very soon, all roses will have stems.

 

And here is my new quilt blog addy, with my raffle quilt, love you guys

http://www.myhdquilts.wordpress.com

Oct 31/07 Feeling content

I am thinking of ending my blog for now, and this is why. Yahoo is shutting down their blogs in 08, and i dont think i want to wait for them to shut me down, i will shut them down first lol. They say they will try and transfer everyone’s blogs, but they have no idea where that unknown cyberspace will be lol, so i don’t think i will leave it up to them. I have some other reasons also.

My 360 friends are wonderful, and i will still check in on you guys, i am just having a little trouble keeping up with reading everyone’s blogs the last few months, and so i just wanted to let you all know, i love you and care about you, will stop in and visit too, but will not be blogging any more myself on 360, for now, anyways, i think lol. But you never know.

A good friend asked me a question a few weeks ago, i was asked if i am happy with where my hd journey is right now. I thought about it, and know that my hd symptoms, my distress, and my unhappiness over my hd, were much worse a couple of years ago, and i was asked, with the improvement that i have had with my symptoms, even though, i am still not “normal”, would i be happy if a cure came along today, that could not reverse me to before hd, but could keep me at the same spot i am in today with my hd, could i live with that, and would i be happy. I thought about it, and i thought, if i had been asked this two years ago, the answer would have been no. But i said, yes, with all my heart, i am happy now, for two reasons. First, my symptoms have improved drastically with the memantine, and second, i am no longer in distress, but content.

And so, i have been wondering why i have not had any more blogs to write for almost 2 months now, and now i realize why. I have just run out of things to say, you see, because for me, my writing has been about my life, my hd journey, my family, and i think my writing has been about working out my journey, and somehow, i feel happy with the things i have written, i feel happy with my life, and i feel content. And so, i just don’t feel a need to write any more right now, but i may have more to write again.

My blog and the things i’ve written mean a lot to me, and so i am probably going to copy it onto another server for now, maybe blogger.com or something, just so i dont have to trust yahoo to save what ive written. And so maybe, on another server, i will write more again, we will see…smile.

But for now, i am happy, and i’m happy that i\’m doing some things i’ve been wanting to finish too. And so, i just feel very content, and that is a very good feeling.

Love you all, will see you!

 

 

Aug 07/07 Flower girl

Well, Elisa was a flower girl last weekend. She was quite excited about the whole ordeal, and did really well.

Several days before the wedding, she asked me, Grandma, why is everyone sooooo excited about this wedding? And I said well, because weddings are special honey. That’s when two people that love each other are getting married, and it is a very very special day for them…..and, because you have been picked to be a flower girl for them, that means you get to help make this day very special for them. Ohhhhh Grandma, wow.

She was very good, and stood really quiet during the ceremony, and took it all in. Several days later when i asked her about the wedding, I said, well tell me now, what is special about getting married? Do you know why now? Oh yes Grandma! They promised to love each other forever and ever and ever! That’s why it’s special Grandma!

(See part 2 below)

Aug 07/07 And she boogied all night! lol

Well, Cathy had been quite worried how tired and cranky Elisa might get at the wedding reception…..not a problem! lol As you can see, when the music started up, Elisa boogied! And could they get her to stop? Oh nooooo lol. She danced and danced and danced lol. She had a really great time, and I think they finally had to drag her out of there, and take her home to bed. To be young and have such energy! Wait til she’s 16…..oh no lol

June 17/07 Being a Grandma

We had a wonderful day today…….I just love being a Grandma, and I love my Grandaughter so very very much. She brings me so much joy and love, and I love being able to give her all the love I can. I just feel it is such a priviledge to be a part of her life. But more than that, she feels I am special. She loves to have special conversations with me. She will say, Grandma, let’s have a conversation, and then she always talks to me about things that are on her mind. Asks about God. Asks about me and Grandpa, and why we got married. I say cus we love each other. She will smirk in disbelief, and say, you and grandpa love each other??? lol lol And I will say of course, and we are best friends too. Wow, she says…..lol And she tells me she has a pretty rock collection. And that she has a great big family that loves her soooo much, because she is special. And I say, yes, you are very special honey. She says, of course, cus when i was born, everyone was happy! lol And I say yes, honey. And she says, Grandma, I am so special, you made me a pretty dress Grandma. I love my new dress Grandma, and I say I’m glad honey. Grandma? Yes honey. I am growing up Grandma. Yes honey you are. I love you Grandma…….I love you too sweetheart.

*     *     *     *     *     *     *     *     *     *     *     *     *     *

I never knew either of my Grandma’s very well, and I remember them not being the affectionate type, but I always loved visiting with them when we did visit. But I guess I always wanted more from a Grandma. When I became an adult, I made a conscious choice to get to know both of my Grandma\’s better. It was very difficult as an adult to try and start a relationship that was never really there to begin with, but I did, and I am very glad I did. I discovered the reason they were not affectionate women, was because life had handed them both very difficulty and trying lives to have to live. Their lives were about survival, and they were both full of tons of wisdom. And, I think they both loved me.

When my grandaughter was a baby and young toddler, my hd sympotoms were much worse, and i could not be the person I wanted to be for her, and so I am just glad my hd has improved so much that i am able to be the grandma I always wanted to be. So for now, I am very thankful for this time of wellbeing i am having with my hd, no matter how long or short it lasts, it gives me time to create good memories with Elisa.

But for me, I guess I always wanted to be the type of Grandma that I had wished I had had, and so, for me, I feel so very very fortunate, and so very priviledged, to be able to be that special person for my Grandaughter. It is a dream come true for me, because I have been able to become for my Grandaughter, what I wished for myself…….I think that is very special.

Photo: Elisa wearing a sundress made by Grandma Barb

June 04/07 I am so happy

Look what I did! 

I am soooo happy…..and Elisa loves her new little dress and hat…..and she was so happy that I could make her a dress. I am really glad that I was able to do this…..so glad, and I am happy that right now, I can do some things I want to do. I am really glad that I have had huge improvement in my hd journey. Hd is not supposed to get better, it is supposed to get worse, right now, mine is getting better, much better…..and so, I am happy.

June 1/07 I Feel Normal!

I don’t know how to explain this, and i don’t want to brag when others are having a hard time, but i just cant help it, i feel so thankful. I don\’t know what’s going on, but all i know is i feel NORMAL. To someone that doesn’t have hd, you may or may not know what i mean. But, i have had hd for 5 years now, and i have had good days and bad days, but never ever ever has there been a day where i could just say i actually feel completly NORMAL. Yesterday and today are the first two days in five years that i can say that. I don’t know the reason, and i don\’t care why. Yesterday and today i just did completely NORMAL things, nothing spectacular, but just normal things around my house that i just don’t do any more. Like i did dishes, cleaned the cat littler, cleaned the bathroom, hung a picture on the wall, made some hard boiled eggs because I, not someone else, but i decided to make potato salad, i got all the groceries to do it all too, and i cleaned up my balcony a bit, and dan took me to wallyworld cus i wanted to buy some plants to make a nice herb garden on our balcony, and i did some sewing, and watched tv, and just did some very very NORMAL things, that we all take for granted, until normal just isnt normal any more, and i am just in tears cus you have no idea what it feels like to feel normal, when you have forgotten what normal feels like. I don’t know how long this will last, but it doesnt matter. I am going to be 50 in a few weeks, and i have decided i want to do something really big, something really memorable, not on my birthday, but sometime during my 50th year, i am going to do something that will mean a lot to me, i have an idea what it is i’m planning, and i think it will be really nice. For now, my short term goal is to eat healthy and exercise a bit more too, so maybe i can look good for 50 too, and i will be happy.

May 09/07 I Propositioned my Neuro today…..he he he

I propositioned my neuro today, yup, and he went for it, had him right where i wanted him, he he he he he, should i tell the rest? he he he

Ok, i have to tell, so funny. I had a 3 pm appt with my hd psychiatrist today. Their clinic closes at 3, but this was an added on appt cus i havent been able to get in to see the shrink (dr g) in so long…he keeps ending up in the bahamas on my appt days lol. So anyways, i also am 6 months behind in having my yearly appt with the neuro too, because, guess what, dr g was in the bahamas and could not get back to do his assment with my neuro, dr blair.

Sooooo, anyways, today i had an appt with dr g, and guess who else happened to be there, saying goodbye to the staff for the day, he was going home now, dr blair! lol Well, my mind got to thinking, we drove 2 hours to get in here, and all i get to see is dr g, but i dont get to see dr blair, will have to try and schedule, once again, a yearly appt., where both dr’s will hopefully show up at same time. So dr blair is done, and saying night everyone. And my mind got thinking, dr blair always treats me like a lab rat, so i am going to tempt him with his lab rat mentality!!! And it worked!!! LOL LOL LOL!

I say, dr blair, i bet you dont know my name. He stands there looking puzzled, and says, it’s Barb isn’t it. Dr g starts laughing his head off, and says hey man, your good, and we were all laughing. He says how r u, and i say, well…..i want to proposition you lol lol lol. The look of shock on both dr’s faces was hilarious to say the least. He says, hmmm, in what way? And i say, well, i havent been able to get in to see you for a yearly, but, i am going to appeal to the lab rat in you, and i just know you will want to stay late just to see me. He says how come. I say, well, because 6 months ago, dr g here started me on memantine, and i am doing excellent, and i just know your going to want to check this out, mr lab rat lol. He looked at me, says, your on memantine??? Yes, go have your visit with dr g, i want to see you for sure!!! lol lol lol Dr g killed himself laughing. And the secretary told me nobody has every just sat there and wangled an appt. They have tried, many have tried, but never has it been accomplished before! lol lol lol

So dr g was real pleased that im doing really good on my meds, and then i was off to dr blair. Dr blair could not believe it, and neither could i. Tests that i have struggled through before, i was able to do just like that, bingo bango! He was impressed. He says, wow, this is exciting, this was worth staying for! I said, i knew i could appeal to the lab rat in you, and it worked huh? and he laughed and laughed, and said im doing really really good compared to a year ago! And so i am very very happy!!!

And i managed to kill two birds with one stone. I really wanted to know from the neuro evaluation aspect, how i was doing with the memantine, so it was just perfect. But even better, once again, i had my dr’s in the palm of my hands lol, and i just love being in control when it comes to dr’s and meds and stuff, cus i know some day i wont be able to, so for me, this was just icing on the cake, had me laughing and had them laughing too. So i am happy, and so happy too to see how much ive improved by the neuro exam, this makes me very happy. Instead of having more decline, i’ve had improvement, i couldnt ask for better.

The photo is of Elisa, looking just as mischevious as Grandma…..he he he

April 23/07 Feeling Silly

I am feeling silly, and having some fun. Decided to colour my hair lol lol. Well, my hair used to be a nice salt and peper, but last five years it has gone very white, much whiter than I like. I thought I liked it, but well, just got tired of it, so decided to go for a change lol.

So I told my grandaughter I was thinking of changing my hair colour, and she was like well, grandma, you have to have grey hair grandma, your a grandma lol. So I tried showing pictures of how dark my hair was only five years ago, and how long it was too, and she’s like, oh no grandma, your hair has to stay short and grey, that’s just how it has to be.

So we decided to have a hair colouring party at my daughters house, well we pretended it was a party, so Elisa would think it was a big deal and a fun event. So she got to watch grandma get her hair all coloured, and she was just like, oh wow grandma, we’re having a party, and oh wow grandma, your hair isn’t grey any more! So she was quite excited and we had a fun time.

Now as for me, I’ve been having to really get used to this, it is a huge change. At first I felt so very very silly, and now I’m like, ok, maybe this is kinda fun, and well maybe I do like it now. So I’m going to be 50 this year, so I’m thinking, why not be a little silly and have fun. Love you all!

April 8/07 An Easter Sweater

I am very happy that i was able to make this little sweater for my grandaughter for Easter. I only decided 4 days ago to do it, and i didnt have a pattern, but i was pretty sure i could do it. I kept ripping it apart, cus it didnt look right, and my husband was so nice, and kept saying it looks good, don’t undo it.

And then as the countdown to when it needed to be finished, he\’d glance over every once in awhile, and smile and ask me if i thought i would be able to finish it. And i would say yes. But i felt so proud and happy that he seemed to like it too, and seemed so anxious, and then the minute it was finished he said well lay it out nice so i can take a picture of it for you…..wasnt that so sweet? And Elisa loved her sweater, and it looked beautiful on her. I am so proud.

Things like this are hard for me to do these days, and i’s hard for me to plan on doing something, and complete it, and so that is why i am so proud of it, because i have HD, i don’t have it bad yet, just early stages, but i am very proud of this. I am so happy. And i like to be able to give my grandaughter something new and pretty for Easter, because I think Easter is a time of new beginnings, it is a beautiful time.

I like this scripture verse:

Old things have passed away; behold, all things have become new. 2 Corinthians 5: 17