Wednesday, December 2, 2009
Friday, September 25, 2009
I live in a rural area where it is mostly crop farming; corn, soybeans, winter wheat. The other day I was walking the puppy and it was very windy. It is almost harvest time so the corn is very dry and for the first time in my life I noticed the music of the corn blowing and rubbing against one another in the wind. It was a beautiful sound. It seems illness & disability can open our senses to all the things we used to miss or ignore.
Tuesday, September 22, 2009
We also went, at my urging, to a hot air balloon derby that is held annually in a town near us. All my years of living here and I had never gone. I decided I wanted to go and take some pictures. My hubby wasn't ecstatic about the idea but I really wanted to go. Reluctantly he drove me to the launch site. I would love to go up in a balloon someday. Years ago I wanted to skydive but now I will settle for a ride in a hot air balloon. We watched one group of balloons launch and another come from another site and land. As it turns out hubby enjoyed himself. I wish the pictures were better but I did get a few good shots I think. I hope you enjoy them too. I had a great time taking them. Yes, my neck was killing me later after maintaining the position it took to get the shots. It was worth it though.
Wednesday, September 2, 2009
1. The illness I live with is: MS, CFS
2. I was diagnosed with it in the year: 2000
3. But I had symptoms since: years prior
4. The biggest adjustment I’ve had to make is: Had to stop driving & dependent on husband.
5. Most people assume: I feel ok.
6. The hardest part about mornings are: Pain, stiffness
7. My favorite medical TV show is: Nonfiction medical shows
8. A gadget I couldn’t live without is: tub bench and detachable shower head
9. The hardest part about nights are: Getting comfortable related to pain
10. Each day I take _16_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Not covered by insurance
12. If I had to choose between an invisible illness or visible I would choose: invisible
13. Regarding working and career: I do not enjoy being unable to work.
14. People would be surprised to know: How sad I am because of my cognitive deficits.
15. The hardest thing to accept about my new reality has been: Lack of emotional support by my adult children.
16. Something I never thought I could do with my illness that I did was: Still be a fun Nanni
17. The commercials about my illness: Don't depict reality fully.
18. Something I really miss doing since I was diagnosed is: working
19. It was really hard to have to give up: career & driving
20. A new hobby I have taken up since my diagnosis is: photography
21. If I could have one day of feeling normal again I would: Play with my 8yr. old granddaughter in a way she hasn't seen me before.
22. My illness has taught me: I have much to live for.
23. Want to know a secret? One thing people say that gets under my skin is: "You look good"
24. But I love it when people: Make me laugh.
25. My favorite motto, scripture, quote that gets me through tough times is: God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.-- Reinhold Niebuhr
26. When someone is diagnosed I’d like to tell them: You are still the same person in your soul.
27. Something that has surprised me about living with an illness is: Tremendous financial burdens & stress
28. The nicest thing someone did for me when I wasn’t feeling well was: Bathe me. My husband is a blessing.
29. I’m involved with Invisible Illness Week because: Dedicated to the education of others to make our lives better.
30. The fact that you read this list makes me feel: Hopeful
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at http://www.invisibleillness.com/
Friday, August 28, 2009
It is a big change leaving your birth Mom and siblings but I soon adjusted to my new home and life. I used to be able to run around in the yard but now I have to wear a leash when I go outside for walks. My new Mom and Dad are so silly as they give me a treat(chewie) every time I poop outside. They are pushovers.
Mom and Dad keep saying "look how big she is getting." Elsie's Mom and Dad say the same thing. They all say "look at those feet." I think I have pretty feet.
I weighed 10.5 lbs at my first visit to the dog doctor. Mom says I have to go back this Saturday and she thinks I will weigh much more. I will have Mom tell you what I weighed.
Oh, I forgot to tell you the most fun part of living here. There are these four furry things that they call "cats" who live here too. I chase them and they run but sometimes they slap me in the face and they have sharp claws.
Friday, August 21, 2009
To find the universal elements enough; to find the air and the water exhilarating; to be refreshed by a morning walk or an evening saunter... to be thrilled by the stars at night; to be elated over a bird's nest or a wildflower in spring - these are some of the rewards of the simple life. ~John Burroughs
Thursday, July 30, 2009
Today I'll get my hair cut. At least she isn't a doctor! Then if I feel like it, I'll go get me a pair of jeans that won't fall off in public! YES!"
“As you simplify your life, the laws of the universe will be simpler; solitude will not be solitude, poverty will not be poverty, nor weakness weakness.”
Henry David Thoreau
Friday, July 17, 2009
I wasn't going to blog today but after visiting http://lazyjulie.blogspot.com/2009/07/random-thought-from-solumedtrol.html#comments and having a few chuckles I decided I would share a little beauty. These are a few pictures of my lilies that bring me such joy during the summer. I look forward to walking out every morning to see what new color has bloomed. Their beauty brings me peace. I envy their tolerance for the heat and ability to still stand tall.
Thursday, July 16, 2009
Monday, July 13, 2009
Bailey was a beautiful dog, black lab/Australian Shepard mix. She was a very loving and faithful companion to me and my husband. She was our baby. When my granddaughter was born 8 yrs ago I cared for her while her Mom worked and Bailey would lay beside the playpen while Addie napped, never leaving until she awakened and I picked her up. She was so attentive to Addie until the day of her death. Addie was able to see her Saturday morning before she passed away and brushed her for the last time. Bailey loved being brushed.
We know we love our pets but I have found since she is gone there were so many things I took for granted. She was a form of security for me when I would venture outside. Every time we went out she came with us. She did chores with my husband every morning and evening. Every night when I got up to go to the bathroom I would have to maneuver around her either beside the bed or in the hall. How I have missed that the past 2 nights. I walked into the living room this morning to open the curtains and looked down expecting to see her lying on her rug. I haven't been able to go outside yet today because I don't have my companion.
She was raised around many cats and litters of kittens. She was so gentle with each and every one of them. I have one cat named Baby who was her special friend. She would nibble Baby's neck until it was so wet. Baby will miss her special friend and her neck nibbler.
Bailey had a special canine friend named Elsie, a beagle who lives across the road. They too enjoyed many runs and adventures in the woods, pastures and cornfields that surround our house. They had a run just 2 days before her death. I am so thankful she was able to enjoy her life until the end. Bailey took a walk with me, my husband and our granddaughter on Friday evening.
Since I became disabled and home bound Bailey has been such a source of love, companionship and security for me. She was a major part of my days. I shall miss her greatly.
Bailey had been battling congestive heart failure for the past several months. She took a turn for the worst on Friday, having increased difficulty breathing. She passed away quietly at home Saturday evening with her head resting on a pillow I had placed in the floor for her with both Jim and myself beside her like she has always been for us.
"Until one has loved an animal, a part of one's soul remains unawakened. "
Wednesday, July 1, 2009
Vertigo: Aside from being the name of a classic 1958 Alfred Hitchcock film (with Jimmy Stewart and Kim Novak), vertigo is a feeling that you are dizzily turning around or that things are dizzily turning about you. Vertigo is usually due to a problem with the inner ear. Vertigo can also be caused by vision problems.
The word "vertigo" comes from the Latin "vertere", to turn + the suffix "-igo", a condition = a condition of turning about). Vertigo is medically distinct from dizziness, lightheadedness, and unsteadiness. See: Dizziness, Lightheadedness, and Unsteadiness.
Friday, June 26, 2009
A few posts back I discussed some possible cardiac symptoms I was having. I saw the cardiologist on June 17th at which time he informed me he wanted me to have an echo cardiogram and a chemical stress test. The tests were done on that day. So I waited until June 19th to receive the test results. My echo came back normal but the stress test showed an abnormality. I was scheduled for a cardiac catheterization on June 23rd.
My husband has 7 coronary bypass grafts, 8 stents and an artificial aortic heart valve. We have been through some trying times over the past 15 yrs. It isn't as if cardiac procedures are foreign to me but when it came to me being the patient I suddenly lost all perspective.
My Mom died at the early age of 52 and I am 52 now. For whatever reason I have always felt living past the age of 52 would be a milestone for me. I never claimed to think logically. So my mind ran wild with scenarios as you can probably imagine. I found myself so frightened and certain of impending doom. Many things go through ones mind when confronting your own mortality.
I made it through the 3 days of waiting for the procedure. That morning a relative calmness had come over me. Strange feeling for me. My husband went overboard trying to reassure me by using humor of all things. Poor guy he was doing his best to help me through what he knew had me very frightened. In retrospect I am grateful for his support, love and humor.
The procedure went smoothly. I was so impressed with the cath lab team and their ability to make me feel at ease throughout the whole thing. We even had a conversation about the use of bee venon therapy for certain diseases. A catheter is in my heart and I am watching it on the screen and we are talking bee venon.
One regret I have is not asking the nurse to shave the entire area as it is swimsuit season. Yeah right, me in a swimsuit. Oh, the results of my cath? No signs of blockage! Yippee..
I had no blockage so I had to keep my leg straight and motionless for 2 hrs. and then I could go home. Now if I had had stents placed or an angioplasty I would been kept overnight and my leg would have been motionless for 6 hrs. Insurance companies never cease to amaze me. Not that I think I needed to stay overnight but something just doesn't make good sense.
That is what I did this week and now I am looking forward to the results of the Holtor monitor I wore for 24 hours. Hopefully it will explain my symptoms. Other than having a bruised groin, a partially shaved pelvic area and frequent palpitations I am back to the normal life with MS.
Friday, June 19, 2009
Charles Lamb quotes
I am not feeling up to writing a post today. I look forward every morning in seeing which of my lilies have bloomed. I hope you enjoy.
Saturday, June 13, 2009
To find the universal elements enough; to find the air and the water exhilarating; to be refreshed by a morning walk or an evening saunter...to be thrilled by the stars at night; to be elated over a bird's nest or a wildflower in spring - these are some of the rewards of the simple life. ~John Burroughs
Friday, June 12, 2009
I shall persevere with optimism and hope that I will gain some strength despite the new found knowledge of my limitations. I guess I knew them but I didn't want to think about it. It is difficult to ignore when someone is catching me while in free-fall. On a positive note I am thankful there is someone there to catch me when I am on the verge of falling.
Thursday, June 4, 2009
“Follow your heart, but be quiet for a while first. Ask questions, then feel the answer. Learn to trust your heart.”Author Unknown
Tuesday, June 2, 2009
- Kiosk(machine) usually put in crowded area of store
- Some have tall chairs to sit in to perform task at hand but what if one can not get into chair or is in wheelchair therefore preventing one from using the machine at all. Most places have no chairs requiring standing for entire task which is impossible for some such as myself
- Machine is too tall for anyone in a wheelchair. Definately not wheelchair assessible
- Did I see any employees hopping stumps to assist me(us)? No
I see the need for advocacy and action here. I need to take some action and be more of an advocate for myself and others instead of just writing my concerns/complaints in a blog.
Sunday, May 31, 2009
This is how I feel on most days "half here".
I know most of us with disabilities deal with the issue of how much control we have lost over our lives. I do pretty well at containing my frustrations over the lack of control I have in my life these days. My husband had told me about one of his clients he had worked with who had MS and how he found the smallest things frustrating and he expected immediate action from his wife or children. One example is it drove him crazy to sit in his W/C and notice the mini blinds were raised unevenly or the slats weren't exactly in sink. Now to my husband at the time this seemed odd and interesting. He has a little more understanding at this time in his life I believe.
The one thing I have found that I do have control over is my hair. Well, as much control as one who can barely wash her hair because of her arms being so weak. Hair dryers and curling irons are a thing of the past for me. I was feeling frustrated and decided I had to have my hair cut on Thursday after my PT session. That is another story. I have gone from long to short so many times over the past 10 years I have lost count. So after PT I had my husband drive me to Wal-Mart to get my hair cut. I get into the shop and soon realize I am getting my hair cut by a new beautician right out of school. I tell her I want it short and her face turned pale. I assured her I knew what I wanted. Then she asked me to look at a book and give her an idea of what kind of cut I preferred. I chose a cut I liked and she quickly propped the book up on her counter as a guide. OMG.... I am getting a tiny bit nervous at this time but still determined. I could related to being new in a career right after graduating. She did offer to let the more experienced beautician do the cut but I just couldn't make her feel any more inadequate than she already felt. She tried to wash my hair and I was in too much pain after just going through PT that washing was out and I do so enjoy someone else washing my hair. On to the spray bottle we go. I could go on with every detail of this haircut but I will spare you. After she was finished with a little help from the other gal she asked me how I liked it. I had to be honest. I stated "I would tell you if I could see it" as she had my back toward the mirror. She was quite embarrassed and I tried to make light of it. Anyway my hair is short now. Does it look like the picture? Well not exactly but it looks decent. I did my best to make her feel as if she had done a marvelous job. The main point of this drawn out tale is that I took control, set my mind to something, wasn't going to let anyone stand in my way of having short hair on Thursday. Waa Hoo...
I am getting out of order with my 3 C's so please forgive me. During my initial PT visit I was used as a training tool to show someone the wonderful effects of a positive Romberg test. You know, feet together with eyes closed. I know what direction I fall in what direction do you fall in? I go back and to the right. My knees buckled this time. That is a new one for me. I am receiving PT for neck and back pain. So she put me through my paces, gave me my home exercise program and plans to see me two times a week until the insurance says enough I guess. I have had only 1 fall since Thursday. That was because I do the craziest things like stooping knowing my knees don't have the power to take me to the upright position. I just wanted a picture of a flower and ended up on my back in the yard. I tried to snap a couple of shots while down but it was just too windy to boot. No, I am not light as feather and was blown over. I wish. My dear hubby came to my rescue and assisted me to the standing position.
What an important word. Life is so dependant on open lines of communication. My husband usually grinds the coffee beans when getting groceries. Every great while when he has brought a new bag of coffee home, for a few days I can taste a hint of hazelnut from someone grinding their beans previously. I love it. I look so forward to a new bag of coffee. I guess I always comment on the flavor and my husband has been thinking that I was complaining so this week he bought the already ground stuff. He was shocked when I told him I loved it when he ground the beans and it had a hint of hazelnut. We continued to talk and I realized a few other things that I say that make him feel I am not happy or dissatisfied. We have to communicate because all these little mis-communications add up to larger problems. It was a very good thing he didn't grind the beans this week. It made us talk and listen to one another. Be thankful for the little things.
Tuesday, May 26, 2009
My son wanted to name her Tripod which was definitely out. I wanted to name her Precious but my 2 year old granddaughter had a different idea. She said "no, her name is Baby."
Monday, May 25, 2009
Yes, I did some advice on placing pictures in my blog's and yes I did make my husband take me off the beaten path to get the goat photo's. They were too adorable to pass up.