Thursday, December 24, 2009

HAPPY NEW YEAR

Hot Comments
Maggie at 7 months. Enjoying the snow.

Happy New Year!

Wednesday, December 2, 2009

Computer Problems

I am having computer problems and uploading photo's is very time consuming for me at this time if not impossible. I hope to have a Maggie update complete with pictures as soon as possible. She has grown to be a beautiful dog and is a true blessing in my life. I will share some of her antics soon.
Coming soon.......

Thistles & Thought

I have been absent from the blogging world for two months. It has been a combination of things that prevented me from being motivated to write. I found myself doing what I usually do when I am becoming increasingly depressed, I isolate myself and keep my feelings inside. I don't advise this method of coping to anyone. Between pain, depression, extreme fatigue, family issues and financial problems it all just became too much.
I literally had to force my body to get out to walk Maggie, our 6 month old puppy. It was during those walks that I was able to do a great deal of thinking. The puppy of course would run and romp and have a grand time which did make me smile.
During our walks I seemed to be compelled to notice all the green thistles in the field. Everything else is preparing for winter and has turned brown but those prickly thistles hang on to the bitter end I guess. At first I looked at them negatively remembering the pain of stepping on them as a child and trying to rid the yard of them.
It may seem like a weird revelation for me to have but I soon looked forward to seeing this sturdy plant that exhibits the will to endure, tenacity and the capability of protecting itself with those sharp prickles.
My prickly new friends soon made me realize I needed to develop their strong qualities, minus the prickles. Although during the winter I don't shave my legs as often so I do have my share of prickles.
I had let myself sink to low and felt no purpose, no endurance and a definite lack of tenacity. So as silly as it may seem the thistles have been my therapists lately and have helped me try to look at all aspects of my life with more enthusiasm and positivity. I am a work in progress and isn't that what life is all about?

Friday, September 25, 2009

Rainbows

I love rainbows and the music of Colby Caillet so this brightened my day. Hope it brightens yours too.

Stop & Smell the Roses, Why Not Listen to the Corn Sing




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

Recent Happenings

Over Labor Day weekend my husband and I were being lazy and watching a movie, No Country For Old Men. I had seen the movie several times but for the first time during one scene a couple of lines smacked me in the face. Thanks to Google I have a copy of the two lines that spoke to me that day.
"All the time you spend tryin to get back what's been took from you there's more goin out the door. After awhile you just try and get a tourniquet on it."
Character: Ellis played by Barry Corbin

Isn't that what we are doing living with chronic illness and disabilities? We are trying to just "get a tourniquet on" our lives living with all the changes and adaptations in our new world. That is how I feel right now in my life. Some days the tourniquet is tighter than others but I keep trying to move forward and hope it loosens a bit from time to time as I continue the cycle of living. Just my thoughts. Maybe it is just my scrambled brain.

Now on to hot air.

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.





I have also had quite a time with our new puppy. Maggie is growing so fast. She is asleep beneath my feet as I type. Shhhhh..... She is 4 months old now and is a handful but she is such a joy for me.




To be quite frank with all the above pleasant moments there has been a great deal of emotional and physical pain. Family problems, financial issues and everyday stresses of life have me feeling like I really need that tourniquet on tight. If you see a balloon fly by one day it may be me on my great escape. LOL It will be a rainbow colored balloon by the way.

Wednesday, September 2, 2009

My Latest Photography Adventure

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Maggie and Me

I love pears!
I told Maggie I would post an update. The vet weighed her on Saturday and she weighed 24 lbs. One month ago she weighed 10.5 lbs. She got a clean bill of health.
Now on to me. I had a lousy month in August. Much more pain than usual and the fatigue was almost unbearable. I have started having some worsening vision problems and hope to see the opthamologist in the very near future.
I love Maggie so much and she brings me so much love, joy and pleasure. I had forgotten what potty training entailed and the energy I would need to keep up with her. I take her out on a leash and walk her much more than I am used to walking and she is very strong. I am trying to teach her basic skills such as to walk on my right side only to prevent me from falling. Wow the energy this takes. We will get through this. LOL
I forgot to mention my sleeping pattern has also been disrupted since her arrival. She seems to think I should be out of bed by 6am - 7am. She jumps in bed and tries to root me out of bed by digging and digging under my body. Needless to say I am up earlier than I am accustomed. I didn't realize how a change in my sleep pattern would affect me. Please wish me luck with this endeavor
September isn't off to a great start as all the symptoms have followed me into the new month.
I have faith it will get better.

30 Things About My Invisible Illness You May Not Know

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

Hi, My Name is Maggie

Hello, my name is Maggie. I was born May 26, 2009. I had 8 siblings. July 11, 2009 these people came to visit and adopted me. We went for a ride to my new home. My proud new parents are Kelli and Jim or as they call themselves, "Mom and Dad."


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.

There sure are a lot of new rules. They don't like me biting their fingers and toes. They don't like it when I chew on all the wood stuff in the house either. I do have these things called toys. I have a tennis ball, a rope thingee to chew on, a squeaky possum head and a sock. I wish they wouldn't spend money on me because I am happy chewing on their shoes.

I have a new friend who lives near our house. Her name is Elsie. We like to wrestle and play together.



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.



This is me and Elsie playing and I am as big as she is now. Maybe Mom will show you more pictures of me sometime. It was nice meeting you.




Friday, August 21, 2009

Simplicity & Attitude

First I should explain why I have been blogless for several weeks. I have been having much more pain in my neck and left shoulder and reducing my time on the computer gives it a break. We also lost our family dog on July 11th which caused both me and my husband much sadness and loneliness. Much more than either of us had anticipated. I also have been dealing with nondescript chest discomfort and palpitations which led to a full cardiac workup and then a trip to my G.I. doctor. I also was noticing difficulty and pain with swallowing liquids. The G.I. doc thinks as I do that I am having esophageal spasms. The end results were a prescription to increase my Metoprolol for the palpitations, switched from omeprazole to Nexium for the GERD and was placed on Nifedipine for the esophageal spasms. My next goals are to see an opthamologist and to get an MRI of my c-spine. I need a chauffeur.
We got a new puppy on July 18th and let me tell you life as we knew it has ceased to exist. My daily schedule has been blown out of the water. Not that I am complaining as Maggie the puppy has brought us great joy and comfort. As my husband stated yesterday "there is a reason people have children when they are young" and able bodied.
I must say the past few days have been extremely difficult for me as far as having any energy at all. I have let myself start feeling down. My vision has kept me from keeping up on blogs and today I knew I needed to do some reading and hopefully become enlightened in some way. I visited
http://beingchronicallyillisapill.blogspot.com/2009/08/simple-pleasures.html
and got the boost and kick in the pants I needed. Thank you Maureen. Thanks to her blog Simple Pleasures I walked the puppy a few minutes ago with a totally different attitude.
First I realized how lucky I am that I can walk and enjoy the beauty outside and enjoy the mischievous ways of Maggie. The blue wildflowers appeared much bluer today, I didn't ignore the tiny yellow wildflowers I noticed yesterday. I had a closer look today. So tiny and so beautiful. I enjoyed the wonderful cool breeze and watching the trees sway. Have you ever watched a puppy chase butterflies? It really is quite enjoyable. Instead of having the attitude of just being outside for the puppy and her potty break my attitude was to treasure every moment we were out. How refreshing.
Oh by the way the flower at the top of the page I took this morning. It is a simple flower of blooming gourds. Bird house gourds no less.
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

Inspirational Blogs


I haven't been blogging long but I have definitely come across many blogs that I find inspirational. These are three ladies that have inspired me. I hope they will drop by and pick up their award.
Herrad~ Whose life has taken such a drastic turn in a very short time.
"Independence is so very important to all of us, never realised quite how important it was until I had none left after becoming so handicapped.
Appreciate what I have still got even more than ever."
Every day is a new day and a new chance."
Sherry~ Who is blogging her way through the grief of losing her beloved daughter Nicole can still muster moments of humor and wit.
"I have no desire to ever see a doctor again but that won't happen.
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!"
Diane~ A true inspiration in coping with life's changes such as adjusting to an assisted living facility.
"Life really does come at you fast."
Thank you for your courage, wisdom and inspiration.

How Quickly the Table Turns


I had a flashback just a few minutes ago while I filling my weekly med planner. I fill it in front of my microwave and the counter top was a mess which prompted the flashback.

I was taken back about 12 years ago when I was still practicing as a home health nurse. I had one particular patient who I was extremely fond of. We shall call her Ethel. Ethel was morbidly obese, diabetic, history of congestive heart failure, a chain smoker and was developmentally delayed. She was a very special person. No matter what was going on with her health she was always jovial and smiling.

She didn't take much initiative to help herself and preferred others do for her. We always laughed and joked and we had a wonderful relationship. I would fill her med planner weekly during one of my visits. It never failed her counter top was a mess with coffee drippings and artificial sweetener particles scattered about. I would tease her that I thought she could at least have the counter wiped off before I came to have a clean surface to fill her medication box. After weeks of teasing I arrived one day and the counter top was spotless. She yelled from the living room "do you see anything different Kelli?" Words can not express how proud of her I was at that moment. In turn she was extremely proud of herself.

Now I find the tables turned and I have the weekly medication planner to be filled and the counter top that needs to be wiped clean. Thoughts of Ethel were bittersweet as I miss nursing so much. Yet through her I was taught the benefits of laughter, joking and even a little teasing.

Friday, July 17, 2009

A New Day



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.







I hope you have a nice day.

Thursday, July 16, 2009

The World Keeps Turning


Ok, so I have gone through all the cardiac tests and procedures and except for the recurrent palpitations and bradycardia my heart appears to be in no need of repair, physically anyway. He is going to increase my metoprolol to hopefully ease the palpitations and when asked about the episodes of bradycardia he said "we will have to watch that and if you become more symptomatic we may have to look at a pacemaker." He requested I have my physical therapist monitor my pulse rate after exertion like the extent of my therapy is rigorous enough to raise my heart rate. Get real man! Shouldn't the chemical stress test have answered that question anyway?? I am so tired of seeing doctors and feeling like I get no where or that they have no clue. I asked about my Holtor monitor results and he didn't even have them. I stated "I am sure you would have contacted me if the results had been eventful." He reassured me he would have. Geesh....

I guess I am on a rant today. I think everything has caught up with me. I have been taking my omeprazole regularly and have noticed less chest discomfort. So possibly it is related to GERD. I have been noticing some swallowing difficulty with drinking liquids and burning in my esophagus. The cardiologist did set me up to see my G.I. doc next Thursday, gave me a script for Nexium which I hope my insurance looks favorably on and I am sure another endoscopy is in my near future.

I feel so guilty because I am dependent on my husband for transportation to and from doctor appts. He works so hard and taking off work causes him more stress. I have 2 adult children who are of no help because one has disowned me and the other is apparently keeping a very safe distance between us. That is another blog post you probably don't want to hear.
I am so tired. I want my dog back. I want to give her her daily "kisses, kisses" on top of her head. I want to be independent. I want my husband to be less stressed and depressed. I want my children to love me. I want to meet my first grandson that was born 3 months ago who is being kept away. I want to see my 8 yr. old granddaughter Addie more often. I want my children to believe that I have MS.

That is my rant for the day. Hopefully another one isn't waiting in the wings. I have had a good cry and I think it helped.

I think I will listen to some music. Maybe that will help.








Monday, July 13, 2009

In Memory of Bailey

In Memory of Bailey


April 1998 - July 11, 2009

Bailey came to us as a puppy of about 8 wks. of age. We had a dog, Lady Bug and they became fast friends. Bailey and Lady Bug would take off on dog adventures, looking over their shoulders to see if we were going to stop them and be gone for hours sometimes exploring the woods and creeks and who knows what else. Bailey was a faithful companion to Lady Bug until her death 3 yrs. ago.

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. "
(Anatole France)


Wednesday, July 1, 2009

Main Course - Vertigo/With a Side of Imbalance



Definition of Vertigo
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.




It has been 4 days now awakening with the dreaded vertigo. First I open my eyes and then I turn my head and whoa, someone stop this merry-go-round. With perfect stillness the ride stops and lets me off and I attempt to raise my head carefully off the pillow, hoping to make it to the sitting position when gravity grabs my head and drops it like a rock back to the pillow. Eventually with as little movement of my head as possible I make it to the edge of the bed where I sit hoping for a successful attempt to the upright position. Some days I get lucky and make it on the first try but others not so lucky. This is so annoying.

A precursor to this wonderful phenomenon for me is a weird sensation in my left ear. Strange thing is years prior to my MS diagnosis I had frequent bouts of vertigo which were always thought to be "inner ear infections."

Tips I try to remember during these periods: don't stoop to pull weeds in lily bed or hubby may come home and find me face down among the lilies; when assistance is needed, ask for it; assistance when getting up during the night is best to prevent episode of imbalance and falling backwards into hard objects. This happened last night and my left shoulder blade has the bruise to prove it. Yikes.

I know, this too shall pass. Hopefully it is sooner than later.

Friday, June 26, 2009

My Palpitating Heart



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

My Morning Relaxation


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

The Wildflower In Me

I took a little walk today with cane and camera in tow. I didn't go far but far enough to enjoy the fresh air, get some exercise and capture some beauty.



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

Who is Going to Catch Me?



I began having more than usual neck and back problems and of course increased pain. I knew the exacerbation of my neck pain was computer and posture related. I had started doing some of the exercises I had already been taught in previous PT sessions in the past. I find it so difficult to follow my home exercise program. I don't remember it until I am in moderate to severe pain. Go figure.

I am two weeks into my current physical therapy treatments. OMG. First I don't think it is possible for anyone that doesn't have MS to understand there is a fine line between therapeutic and torture. I think my therapist is beginning to get the picture though. She sees me as a potential "lethal weapon" if I have been pushed to far. Not intentionally on my part but by the reaction of my body if pushed to far. Tremors! She should know better than to put a 1lb. weight in my left hand and tell me to raise it above my head. I did it successfully once but my arm fell behind my head like a big rock in water. She has learned her lesson with the weights. I expect her to be wearing steel toed boots today when I see her.

I live in a very small rural community so they don't see many MS patients so things like my positive Romberg is used as a training and educational tool during my sessions. I don't mind helping educate people as long as they are there to catch me when I go down. I tend to go to the right or backwards.

My husband was enlightened during my last session when he sat in and observed. He had no idea my tremors were as profound as they are. Ask me to do leg raises while laying flat, sure, just watch out after the first one because the tremors start and I have no control and my leg drops like a rock. We found that if I dorsiflex my foot during the leg raises I have control over the tremors. That sure makes my legs more tired.

We moved on to gait. I was even shocked. I know I can't stand on one foot, do heel to toe or any other fancy jigs but I am more restricted than I thought. We tried having me walk sideways. The first leg goes ok but for the life of me I have no control over the other leg. It is lost in its own space and time somewhere. Eventually it comes dragging or flopping over in its own time. Then she had to try backwards. I think I am an experiment for her. I didn't make it 2 steps backwards without nearly toppling over. So it is very apparent I have proprioceptive dysfunction. I could have told them that.

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.



In Memory


In memory of Nicole, the daughter of Sherry at http://wordsalads.blogspot.com/
May you find peace, comfort and strength during this difficult time.

Thursday, June 4, 2009

Heart and Diet

This is certainly something we should think about before it has a negative impact on our lives. I recently had a eye opening experience and the saga continues. I had my GP check my lipid panel. The results were not really surprising. Needless to say my total cholesterol was well over the desired range, my triglycerides were elevated but lower than my last results, HDL was within the normal range, LDL was of course much to high. You can find desirable cholesterol levels at: http://www.mayoclinic.com/health/cholesterol-test/MY00500/DSECTION=results

I have been avoiding and finding other reasons to explain some symptoms I have been having for over a month or so. It is so easy to just contribute all one's aches and pains to MS, fibro and all the other multiple ailments. As a previous nurse I know this is not wise.

The symptoms have not gone away and and new ones have appeared. Sharp pains in my left chest with discomfort down the inside of my left arm. MS? My left side is my weakest and does cause me pain. Then the feeling of pressure in my mid-chest with feelings of palpitations. I do have anxiety problems but I knew it wasn't anxiety related. I also have a history of GERD(gastroesophageal reflux disease) but it hasn't bothered me for over a year except occasionally. I did resume my acid reflux medication last week just in case it was GERD. Ok, I knew I needed to address this issue. I do have a history of heart disease on both sides of my family. Then another symptom appears. I noticed my left leg was swollen and my left hand. I couldn't rationalize this symptom away and didn't try to either.

I saw my family doctor yesterday, reported my symptoms and voiced all my concerns. My EKG showed I had a heart rate of 46. Possible reason for increased cognitive issues recently? I don't have the results of the final EKG report. They drew lab work which revealed my cardiac enzymes were within normal limits so I haven't had a recent cardiac event. Waa Hoo! :-) I am awaiting a phone call to see when I see the cardiologist which is hopefully very soon.

I have MS so the low heart rate isn't because I am in tip top condition physically so we will explore other possible causes. Since I had received my cholesterol results I had been making a real effort to change some of my dietary habits such as to introduce vegetables and fruits back into my diet. I much prefer danish, chocolate and anything else full of refined sugar and saturated fats. Today I visited one of my favorite blog spots and it hit me right between the eyes. I do believe it truly is time for me to develop a new relationship with food.

I must admit I am frightened. My husband has heart disease and has been through so much. I know how serious these things can be. I never expected to be in this situation.

I will stay optimistic and have faith that whatever they determine is the problem will be resolved successfully. I shall leave you with this link:

“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

Access Denied

I must give credit to Herrad at
http://accessdenied-livingwithms.blogspot.com/ for me even seeing this as an issue that is worthy of being dealt with. My husband was kind enough to take me to our local chain pharmacy to get prints from my digital camera. I had several photos to print so I knew it was going to take awhile. My hubby & I have only done this once before, the blind leading the blind you could say. The plan was for me to do the photos while he went to do the grocery shopping elsewhere. "Not so fast honey". I do have significant cognitive problems so I was prepared for this to be a challenge on my own but what I wasn't prepared for was my inability to hold my arms up to the level of the Kiosk(I think that is what you call the darn thing) to touch all the necessary buttons. There was no way I could do this on my own. Amazing the things we used to be capable of doing independantly that have become joint projects.

Problems I see with this technological progression in the use of camera's:
  1. Kiosk(machine) usually put in crowded area of store

  2. 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

  3. Machine is too tall for anyone in a wheelchair. Definately not wheelchair assessible

  4. 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.



Thanks Herrad!







Sunday, May 31, 2009

Control, Communication & Coordination


This is how I feel on most days "half here".

Control
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...

Coordination
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.

Communication
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

Baby Blog

I had written a blog called 'Pets, Pleasure & Health Benefits' April 21, 2009 which introduced you to all our pets except for Baby. For whatever reason, my computer illiteracy or technical skill I wasn't able to fit her picture in the blog. It is my pleasure to introduce Baby.
She is approximately 6 years old. She was born with the umbilical cord wrapped around her leg right above her foot. The lack of circulation to her foot caused the loss of her left hind foot.
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."
She is a very small cat, a bob tail and is extremely attached to me. She sleeps either on my hip or beside me.
She may have only 3 feet but believe me this has not stopped her. She is by far the fastest of our four cats. She is special to our hearts.
Baby is definitely an example as to what animals and humans can overcome living with disabilities. Keep moving forward......

Monday, May 25, 2009

I Had the Greatest Idea For a Blog

Those of us with MS know how quickly we can have an idea or thought and poof, it disappears into some dark abyss of our brain. My great blog idea came this past Saturday as my husband and I were driving to my hometown to visit the resting place of my Mom, Dad and my older brother. All I can tell you is I remember the moment that in my mind I thought "that would be a great blog topic." It seems so bizarre to me that I can remember I had the thought but can't remember it. No one said a brain with MS was a joy to live with. I have been thinking for two days now and can recollect nothing. This is so irritating to me.

I shall let you know if it ever comes back to me and will quickly write it here. Yeah right if I am very lucky. I get so annoyed at people suggesting notebooks, post it notes and such to remember. I have notebooks that I have jotted things in for safe keeping and it takes me days to flip through the notebooks to find what I am looking for. Get real.

So in place of my brilliant blog I had intended to write I shall share with you some of the pictures I took while making our trip to and from the cemetary. I hope you enjoy them.









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.
Kelli♥