CRONEWAY

WHERE HAVE I BEEN AND DOING WHAT??????

It has been quite some time since I posted. I have been working with a Wellness Institute and a Rheumatologist with ailments related to my Post-Polio and Type 2 Diabetes. It is time consuming. Plus I have been crafting for the Holiday which takes up a lot of time. I have discovered quite a bit about the nutritional value of eating. I was required to use an online site to record my food. (CalorieKing.com) It is very comprehensive and has helped a lot with getting me to be more conscious about portions and quality of foods. I am slowing losing weight. But because of other health problems and being overweight I am being considered for Gastric By-Pass Surgery. The group I am working with is very very good. I am in the second phase of being processed for the surgery. The final step is meeting with the surgeon and getting insurance pay. It is a very expensive surgery. Even if I do not get approved I have a lot of tools and resources that will help me continue to loose the weight I need. The weight causes a lot of stress and pain on my joints. I have been getting cortisone shots when certain areas bother me. I was referred to a rheumatologist by my orthopedic doctor. I am currently getting infusions of the drug REMACAIDE! It primarily is used for people who have cancer of the lymph system. It has been shown to help persons with RA, OA and neurological pain. I have had my second infusion. It usually takes 4 infusions. So far I have not felt any different. But because of taking a more active roll in my health and FOLLOWING THRU with the requirements has given me some hope that I can live a fairly pain free life. A big stimulus is wanting to play with my grand-daughter! She lives 3000 miles away and I do not see her often. So when I do get the opportunity I want to get on the floor and play. I also have purchased an ergonomic hand cycle TRIKE! It is sooooooooo cool. I got it in the fall and have not had much chance to ride due to the snow. But come Spring I will certainly have many opportunities. That will be my aerobic exercise. So I continue to work with the systems for health that I have in place. On a lighter note. I have become a member of an online craft group called RAVELRY! If you are a knitter or crocheter or crafter go and join. It is an inspiring group of people and fun!! Problem is I spend more time surfing within the group site then crafting.

RAGING ANGER, FURY, DISCRIMINATION

It has been sometime since I have felt discriminated against. 
The other evening a friend and myself went out to dinner to one of our favorite restaurants.  There were no parking spaces so we parked in a bank parking lot in the handicap designated spot. We went to dinner under an hour. Walking toward our car in the lot we noticed that our car was gone.  All of a sudden we saw a tow truck leaving the lot with my car on the back. My friend had to run to catch up with the truck. I have no idea what I would do if I had been alone. I was livid and did not understand why I was being towed. I am very sensitive to parking issues as I use Handicap spaces a lot.  I asked the driver is he tows handicap people all the time and if he got pleasure out of it. He said to me, "WELL YOU DO NOT LOOK HANDICAP. YOU WALKED ACROSS THE STREET AND ARE STANDING NOW." I went ballistic! I was very confrontational and was trying to be rational. But this driver was uneducated and uninformed. My friend convinced him to take the car off the truck, of course for a cost.
I was so livid for two days. I called the tow truck business and spoke to the owner. He was very upset by the remark his driver made and promised to take care of the situation.  I leaned from him that the parking lot is owned by WALGREEN'S. A huge corporation. They have a contract with the towing company to tow any car in the lot if the person in the car is not patronizing their store. The tow company lures parkers into the lot, with lack of sign-age and then tows them.  The truck sits in the back of the lot and watches people all night long. GRRRRRRRRRRRRRR!  The owner also said that getting any resolve with Walgreen's is almost impossible. They have the right to do whatever they want on private property.  They city will do nothing. It did not matter if the handicap place was legal or not, it was on private property.  I am still quite angry. I did not like the comment and attitude of the driver.  I began thinking about how other slights and wrongs are made against Handicap persons everyday. I need to be a voice for this injustices.
I will call WALGREEN'S and got through the hoops. I WILL NOT frequent that specific store ever. I wish I could boycott all Walgreen's but they are so huge that my one small voice is not good enough.  So I am on a campaign to right wrongs! My anger is fuel.

ADAPT Chicago

THE GIMP PARADE blog is such a great source for what is happening around the disability world. Yesterday there was a great turnout for the ADAPT gathering in Chicago at the AMA Headquarters in downtown Chicago. Some persons in the building were upset because they could not get out the doors to attend to their daily chores or meetings. HUM!!!!!! Sound familiar?????? Being held back by doors that are not accessible; not able to attend to daily chores in the neighborhood; attend a meeting or gathering of importance?????
Even tho I am disabled I am lucky I have a scooter, can drive a car (with adaptive controls), do some chores and go to meetings or to the library! I also can take the train but not buses. I am becoming more and more aware as I become less able of the mobility restrictions in society. I have a doctor I see periodically. The building had an elevator that went to the second floor, where the office is located. Two plus months ago the elevator was shut down and we were told that a part had to come from GERMANY! To this day the part has not arrived. Those of us who cannot get up the stairs are unable to see our doctors. The doctors are trying now to work with the city and the regulations related to accessibility. This incident has open everyones awareness related to the accessibility issues faced by us. In the meantime I cannot, nor can others get the needed care from our doctors. This is just unbelievable! No amount of confrontation has eased the situation.
There was an option given from the doctors that required a longer distance, an older building, inaccessible doors and parking restrictions. So those of us who cannot navigate these obstacles wait.
This incident has caused me to retreat into myself and my home. I am almost afraid to go out expecting the worst. I find myself imaging my trips out and coming up with barriers that seem impassible. Being more disabled, at this time of my life, frustrates, angers and creates the sense of being LEFT OUT OF LIFE! In my attempts to adapt I find that others in my life must also adapt to my situation. And that is difficult to achieve and not seem needy or a problem. I know I have to change to make the changes and sometimes I just feel defeated.

AEROBIC EXERCISE

Here we are in September, already!!!!!! The summer seems to be a blur except for the visit from my son and his family. I finally got to meet my grand-daughter! She is lovely and bright and seems very very aware! Some one sent me a site "Indigo/Crystal Children. Check it out. The newborns are our teachers and are bringing enlightenment to the world.

I've had some serious days of pain and ache. I have been exercising using my had cycle machine. I am trying to build up endurance. The last time I saw my doctor she recommended getting a HAND CYCLE ADULT TRIKE. A great way for AEROBIC EXERCISE. I need something like that to keep all parts of my body working. My joints seems to be fine, it is the muscles that ache and fatigue easily. So, anyway, I purchased a TRIKE. The company that I went to specializes in making bikes and trikes for the disabled. I went wanting a recumbent trike with hand cycles. Well I could get in a recumbent but could not get out. So that was not going to work for me. I went with a trike that is somewhat higher off the ground and easier to get in and out. I am looking forward to riding this time of the year, FALL, as it is my favorite. There are also a number of Forest Preserve trails near where I live so the access will be much easier for me and I can go by myself. The independence issue has loomed over me this past year. Even with my scooter I still need help getting it in and out of the car. So something that I can use right from my front yard and back with no help is a real treat. When I was trying out the trikes at the shop the sense of freedom and movement were welcomed senses. I have always wanted to be able to walk like "normal people" and have never achieved that. I have never been able to ride a two wheel bike, even tho I tried a number of times. My balance is way off. In my thirties I did get an adult trike with pedals and a basket. I rode my two babies around until they got too big for the basket. Then life became busy with other things. So it is almost 30 years later and I am finally discovering that there are other choices for bike riding. I am grateful for all those who have worked on and at the movement issues for disabled. A number of those have been athletes who have been seriously injured who were driven to create a way to exercise. These people have benefited the whole disabled community. In combination with exercise I am hoping to reduce my weight. Since I am not able at the moment to get aerobic exercise, even with eating properly and doing my strengthening and flexibility exercises, I cannot loose weight. I am hopeful the Trike will help.

August Daze

These past several weeks have been busy. I finally got to hold my grand-daughter, Lily. She and her parents came to visit grandparents. I was so happy! I loved having family around. What struck me was that I am now the older generation. Even though I am young in my thinking, when there are grand-children the adults take a back seat. That is ok as it ought to be. But I am not ready to be relegated to the OLD! I still have lots of ideas on how I want to live and things I want to do. I feel now is the time to begin making some of those dreams come true. I have difficulty exercising. I cannot walk or peddle a bike. Matter of fact I cannot ride a bike never could. I have always wanted to though! Now there are adult trikes, with recumbent seats and had peddles. I have been checking them out online and have found a place a couple of hours from where I live that specializes in trikes and bikes for the disabled. But before I go purchase one I need to get my stamina up to peddling. I have a table hand exerciser that seems to be helping me get strength. What I want is to get out on the bike paths around here and see nature and the changing seasons. I have a scooter that I use but it does not give me the exercise that I need. So then the question of cost comes to the forefront. These trikes are very expensive. So I am now in the process of searching for used hand cycle trike. Life just seems to get more complicated and encumbered with the desire to be more active. Even tho I could be considered OLD I am NOT! My whole life has been the attempt at being like everyone else and just doing something. BUT the big BUT is that I have special needs that are important to consider. Follow thru just take more time and again I need to practice patience. I also have a very active crafty life of knitting, and rug weaving and of course I love to read and play my flute. So my life is full and I am grateful. Just need to continue to take care of my physical and spiritual being.

TRANSPORTATION/ENVIRONMENT/LIFE OF THE DISABLED

That is a hearty title! So much in my life seems to revolve around these topics. This past week, two days ago, I drove to the city. I live about 35 miles from the center of this big city and it takes at least an hour or more to drive. Lots and lots of traffic. Train system is good but not where I had to go. So I drove. The purpose of this drive was to be evaluated at a Chronic Pain Clinic. The evaluation would determine whether I was eligible for the program to assist in living with my chronic pain. The program is very well received in the medical community. I was impressed with the modalities that are used.
Ok, so first the drive! Oh man the traffic was heavy. I was going to an area I had never driven before; to an unknown building and parking garage. I was nervous! I made it to the garage, to a parking space right across from the elevator. I proceeded to get my scooter out of the truck of the car. I once again was very aware of how weak I am because I had trouble getting the scooter out even though I had a lift. Got the scooter to about 2 inches above the ground. The lift stopped because the strap connected to the lift and the scooter was not long enough to let me put the scooter on the ground. This has happened several times before but I had someone with me would could pull down on the lift to make it touch the ground and thus release the strap. This time I spent about 10 minutes trying to pull the strap down with no success. I was straining myself; my back, arms and legs. I was frustrated and angry. What I had to do was rock the scooter back an forth to find a place where it touched the ground, then release the strap. Doing this was a huge physical task for me. I finally got the scooter together. By that time I was shaking because my nerves and muscles were so fatigued. The elevator experience was another stress. The sign-age was poor. The elevators were the kind that opened on both sides. Since this was new to me I became even more upset and wondered how late the elevators would make me. With the help of three different people I made it to the floor of my destination, only to find out that scooters could not be acommodated in the office. That is weird isn't it? I had my crutches so walked in shaking at this point due to the upset. I thought I was losing my mind because my body was buzzing and I could barely speak. The first person I saw said I was on the wrong floor and had to go to a floor I had already been to where a person told me to go to the floor I was at. What a mess. And I just lost it and told the person the only way I would get on the elevator was to exit the building. I was about 40 minutes early for my appointment. I waited 1hour to be seen. No one seemed concerned. By that time I was exhausted and wanted to rest. Of course sitting in an uncomfortable chair did not help.
Finally I was seen and the evaluation was about 3 hours. By the end I was so exhausted I did not know if I could get home. When returning to the car I again had the reverse scooter/lift problem. This time I just cried. I waited a few minutes, did some breathing exercises, and small meditation, went back to the scooter problem and calmly allowed myself to take as much time as possible to get it in the trunk. I then had trouble getting out of the building having lined up in a gate that was not working. I had to back out and drive into the next gate. By this time I just let go and forced myself to observe and rest in what was. Looking for potential obstacles and potential avenues to get me out of the city. I finally made it home. I have spent two days resting. My whole body was vibrating and stiff and painful I have tried to think about how I could have done better to prepare myself and how to prepare myself in the future. I am still pretty weak today it being the third day after my trip. I am discouraged about this incident and must make my driving to be less stressful and easy to remain independent. I also have much more empathy for disabled that have to take vans, chairs, scooters other means of getting around. How can we use the mass transit to our advantage? How can I remain independent? How can we make a difference in transportation and the environment so that ALL PEOPLES will benefit? I will investigate, learn and be proactive in the disabled community so that we too can be proud of helping the world and the environment.

TO THE BEACH

Finally beaches are becoming more accessible. I am a great water, beach person and miss getting into lake waters. Walking on the beach is almost impossible for me. Riding my scooter is definitely impossible.
Last week there was an article about a woman in Brooklyn who was able to get to the water over the beach for the first time in 23 years. There is a new heavy duty mat that cities with beaches are installing that make it easy for scooters, wheelchairs, strollers, walkers to gain access up to the water. How wonderful!!!!!!!! The item is called Mobi-Mat and are incredibly expensive so only cities with funding can purchase them. But cities are stepping up and acquiring them. Persons with disabilities who have used these mats are elated that they and others can get closer to the water. Now to have mats along the beach fronts so one can scooter along for miles, or as long as the beach. Or maybe board walks or cement walks close to the beach edge!

PARKING SPACES

I have a Handicap sticker for my car. It is always in the car and when parking I place on the rear vision mirror. Because of gas prices I have not traveled much this spring and summer. When I do it is usually to my PT and exercise. I noticed the other day where I frequently go that the Handicap places have been reduced. I have also noticed that in other areas where I shop, i.e. Whole Foods. What is going on??? There are more SUV's driven by trophy wives and designer babies who park in the spaces orginially designated as HANDICAP! The older and less able to get around on my own I notice that those of us who are less-abled are less acknowledged. Put somewhere out of the mainstream. Are we going backwards in acceptance and public accommodation? I contacted the police department and the rational was that there were too many Handicap spaces and "regular folks" were complaining they had to walk too far! There is no way the merchants can change this. The only way would be to petition frequent shoppers to get the city to notice. So in reality those with NO DISABILITY are more important to the Merchants than Handicap individuals??????????????????

REMEMBERING SUMMER and POLIO

These hot humid days, a little early I may say, bring to mind and to feelings, lethargy, disappointment, pain, and overheating, and a sense of non-belonging.
There is a new book coming out in August by Julie Silver of Harvard Medical School. She has been a great advocate of those of us who had Polio back in the 40's and 50's. This book is a compilation of stories of polio victims. She felt that these voices needed to be heard before the world forgot about polio and Post-Polio Syndrome. I find it admirable that she wrote such a tome. Yet there are many stories that will never be heard or understood if heard. Each of us is unique in our own struggle with polio. Today, for me, working through all of the issues of being a handicap girl in the 50's is time consuming but healing. What will my story say to my children and grandchildren, my friends? Was my struggle easy? What is it like today compared to my early life, living with a handicap? And thus to my feelings today of non-belonging etc.?
I am not a complainer! I deal with what I have today. I do get angry and sad and upset! Hold a lot inside. Wanting to express myself to the world and unfold what is inside to be positive to feel empowered to live this life. I have more to do in this life. I do not know what that is exactly. I have come a long way in working with my disability to the extent that many of my friends do not consider me disabled. Especially since we are all getting older and have our own set of challenges. So I want my voice to be heard, my story told so that .........WHAT? Maybe it is so I accept myself and my own struggles! I will explore more so that I can feel confident when I have to extend myself in public life. I do know that the older I become the more reclusive I become. This has a lot to do with the amount of energy it takes to just go to the grocery store; and the need to remembering the summers of heat, swimming pools, cool libraries, sitting in a wagon and being taken to the Ice Cream Store, the butcher shop where I got dill pickles from a barrel, and coming home to read Nancy Drew mystery's. Not too bad! But alone.

AN EXERCISE IN PATIENCE

I have gone to several doctors lately regarding my sleep problems. My PPS doctor had me on several, not at the sametime, drugs at night that helped the leg, arm and body twitching. BUT they all had codene in them and I am allergic to codene. I'll not describe the adverse effects but lets say I WAS MISERABLE! So I am back on BUFFERIN for the time being. I am now told to not go to bed until I am tired, and do not read in bed, which I love to do. Even using my iPod in bed is a no no for awhile. In the meantime I had been thinking about playing a music instrument. I never followed thu much in my earlier life, just because I didn't think I could do it the right way. YOU KNOW THAT MESSAGE? So I bought myself a Native American Flute. I love it. Hand made by a family in Washington State. I downloaded a music book from the internet and have been having a great time learning. It is an intuitive instrument just right for me. The neat thing is that I have met some really nice people online because of this purchase. The gentleman who wrote the instruction book also has a physical disability. So we had a lot to share and he had encouraging words. Will let you know how I progress. Off to TOOT!