Life's activities

[red1030]

Hi all.... I have not been here a lot in the past couple of weeks. My life has been filled with all sorts of activities and health issues. I believe most of you know or have a hint, that I do not like to sit long. From the time I am up until the time I go to bed I am busy doing something. Evenwhen I can move well, I get everything together to do in one location to limit movement etc.

In terms of my health, things have been sort of rough lately. About 6 months ago I began to loose time as I put it. I would go from one moment in time, then suddenly I was entering another moment in time. Lately that has changed some in that I can see and hear the other person only I can't respond. During this time, I feel like I am floating through time then I loose consciousness and wake a few minutes later unable to respond to Del who is trying to talk to me. I can't seem to process what he is saying at this time. I am exhausted and will follow with 4-5 hours of sleep. A few months ago the doctors did some testing and believe that I am having what is called "silent seizures." Since June the frequency of these episodes has increased to 2-3 times a week. Of course this means that I loose 2-3 days a week which doesn't help my "to do List." They started me on dilantin which would create some drowsiness that I had to fight through the day. I really dislike to feel sleepy so I usually give in to it and sleep. The dilantin did nothing to stop the activity so they put me on phenobarb... it made me even more sleepy and did nothing to the episodes. I seem to be waking up some right now and feeling a little better so I hope I am through the worst of it. I have another catscan to do and then a MRI next week to check out the seizure activity stability. I have not had one so far this week, that is a good sign.

Additionally during this time, I lost some control of both my hands which created a feeling of depression coming over me again. Fortunately my hands came back alive in about 4 days so that is over as well. MS is a funny disease. You never know when it will strict or what body function will be affected. I am coping however. Just some of the old same again. The worst part is I am trying to stay active and it is hard with the sleeping all day and the lost of hand use so that creates a lot of anxiety. I like to be productive each day. Consequently I have to go back to my saying that says, "I have learned that all the good thoughts in the world will not change my MS, but I will continue to reach for the stars, and try very hard not to take it personally when I can't reach them." I am sure working on this.

In terms of activity in my home, we finally have found a general contractor who gave us a great BID on the adaptations that are going to be done to our home. They are going to update to ADA standards 2 bathrooms, a dining room, the two entrances from teh back and the front etc. Del and I have been working on this since Febrary.

Last week I went to a Disabled GI meeting. There were about 40 in attendance. I was asked to speak to them about the benefits available to them at this time. It is surprising how many GI's without legs or other issues do not have the information that they need to obtain medical services at the VAMC. I went over most of them, gave them paper work and names of who to contact. I guess I am going to start going to their meetings every month. It was very rewarding to feel like part of society again.

Also for about 6 months I have been working with the MS Society to initiate a support group for people with MS and who live in my county. This was suppose to start after my house is ADA completed so we could help all MSer's to have facilities at my house. Consequently I am very anxious to get our house completed. The MS society has a list of people who have signed up to participate in a support group. I believe there is about 25 on the list.

Last but not least, I have been asked to join a Fall festival to do oil painting with kids through demonstrations etc. Also I will have a craft booth which will be about 10X15 sq. feet. I am very busy attempting to make items to put in this fair. I am very anxious about doing this, because I have never sold anything that I made before. I am not sure I am up for the critisium that will surely occur. I am not doing the sales however, my daughter and husband are, I am doing the painting demonstrations. This date is October 4th.

I guess that is it, just thought I would share some of what is happening in my life right now. Thanks for reading. If you have any ideas about what you think I should make and sale please share with me you thoughts and ideas. Love Red

[jayne]

your cake dishes are wonderful and your xmas decorations are also very beautiful....I believe anything you do will sell well.....

[monster]

WOW girl, you are even busier than you said while we were on the phone! I didn't know about your meeting with the disabled vets or getting the MS group together. What wonderful things you are doing to help people! I am sure they are all very thankful to have someone so knowledgeable to help guide them through

I know your paintings and crafts will sell well. You are very talented but don't give yourself enough credit. Quit being so hard on yourself and realize that you are a wonderful artist.

I'm, not going to address the rest as we talked about it on the phone and you know how concerned I am. if you need to talk I am only a phone call away...wish I was just right down the street though

Love,
monster

[sweet tooth]

good to see you out and about sis love ya /put anything and everything in the sale it all is lovely and should sell -i know what i have IS PRICELESS TO ME visa couldnt drag it away from me !!!!

[sparkey]

I am so glad to hear what you are doing to help everyone. And you know how I feel about the MS support group after losing my father at a young age to MS. I commend you on all that you do. If you need any help in those areas, please let me know. I promised I would give my adult life to helping find a cure for MS someday.


You know how much I loved the oil painting of my home you did for me. Your landscape pictures are beautiful. I know you will not have any trouble in selling them or the other beautiful glass items you have made. I wish you luck,and good health in accomplishing this, as I know it means alot to you.

Keep up the good work,and I hope your meds/catscan come out well.

[capricorn]

Red...You are an inspiration. God bless you and keep you safe.


Love,
CAP

[Lilly]

My words EXACTLY Cap !

Prayers going up for you Red! Lilly

[Bummer Knees]

Red

I believe getting involved with a support group when we learned my daughter had CP is what helped me with coping with her disability.

When I was looking at starting a support group in our area I went thru a training program with the Self Help Center, the information I learned was very valuable and led to the success of the group.

From what I had read on the forum I knew you were going thru a rough time, glad things have goten better this week.

You are so talented!

Love ya.

Bummer Knees

[Tuffy]

Red, Sorry to hear you have been feeling down, But on the other hand you keep fighting. I do not know where you pull the strength from, But thank the good lord for your support system, If there is anything I can do to make your day a little lighter and brighter, please let me know. I agree that your glass ware is outstanding along with your paintings and crafts, and should sell well. Good luck and my thoughts and prayers are wiith you.

Enjoying life and what you do in it is what it is all about.

[red1030]

Hi all...thanks for your very uplifting responses. You have encouraged me greatly. I am started to feel better today again. I went to the VAMC. The one thing that I left out is that I am participating in a weight loss study. They are looking at diffierent components that can be measures that help to create sucessful healthy dieting. The one I am in is testing if money can be a determinate towards healthy eating. What happens is that the participate calls in their weight every morning. This is compared to a weight loss guide of 0.1 lbs per day. Eveyday that you make your weight you earn up to $3.00 depending on how much you BID. Every time you go to be weighed in they give you $20.00 for coming. I ususally BID only $1 per day. Money is not an incentive to me. However, I usually earn about $60.00 per month. I have been in this study since July 4th...yes I started a 1500 kcal diet on a holiday. The best part that inspite of my health issues I have now as of today lost $21.00 lbs in less than 2 months. I have not been able to loose this kind of weight since I was diagnosed in 1996. My thyroid was out of control for a few years, I stopped running when diagnosed so I continually gradually gained weight. This summer I have been swimming 3-4 times a week and doing the diet plan which is just regular eating counting your number of milk, starches, meats, fat, and vegetable intake. I get more than enough to eat each day. This is working well. If anyone is interesting in doing the diet plan just let me know and I will explain how it works. It has been good for me. I will be in the study for 6 more months.

In terms of my health we will see what will happen. In terms of my MS support group, I did complete a 2 hour session with a couple of people working at the MS Society. I have a long history of running support groups in the US Navy for cigarette smokers. I even published my mini research about support for cigarette smoking trying to quit and number who were not smoking after 1 year. I did this from 1092-1995 and then again in 1996 while in Okinawa...it was a collateral duty as the Navy would call it. It was done after duty hours and on liberty time. (off time)
Consequently I didn't have to go through a lot of hours of education. Also I brought in a plan with a scope and mission of the support group...and interventions on how to accomplish the mission. My plan was to focus on what we have versus what we lost. However, there will need to be time to allow people to discuss what their issues are in terms of anger, depression and so forth...but then to help them walk through that path to a more half ful lversus half empty glass. I can't wait to get the house contruction done so that I can start this group in my home ...at least in my home to get started. Thanks everyone...love Red