Lilly Sway

I have deteriorated now to sitting more often than I would like to here of late. There is a need to, whether I want to or not. I have both my bones rubbing at the knee and the pain is quite unbearable there is no cure for rheumatoid arthritis only the reality that all the pain killers in the world are a passive non addressing of the core problem that plagues my days and nights constantly. I have been out of pocket since a few weeks ago due to this wretch id agonizing, overwhelming pain.

I as usual have just kept up that old faithful mind set that nothing lasts for ever and I sometimes feel that I am dead wrong this time, I only wish I was and maybe I can believe that they are wrong. I sat for a collective 18 idle hours waiting for a diagnosis at the emergency room, only to be given a Tylenol 3 prescription, that is standard. In after the x-rays confirmed my worst fears. I am going to be crippled here soon yes that was the diagnosis, I know that oh well people live with that everyday, but with no health care this is a night mare. I have bone on bone damage now, and it is escalating to now my other leg I am worried and rightly so.

I have been crying at night, every night for as long as I can remember anymore I am a nervous wreck I can not eat, or function, I break to the nearest chair in sight just to get off of my legs constantly. I went to the grocers with my family and could barely stand the pain long enough to remember what I needed. I was trying to get things that no one else ever thinks about when they go, and frankly I wanted to get out of the house. What a bad idea I cried my self to sleep and could not function on my legs at all the next day.

My thirteen year old has a computer chair he brought it to me to get to the kitchen so that I could make him breakfast, so now I am on wheels so to speak that is on wheels,  but not a wheel chair, with no arms on this chair I move, since it is for a young person it is narrow and has the ability to raise up to reach the cabinet with little effort and I think I will try to modify it. I have been pouring my thoughts towards the chair since I need it more often than not. I have for two days now jumped in that chair and used my arms to spring board myself from room to room. I have given myself a diet of liquids, for the proof is in the pudding. If I loose a bit more weight I can maybe stand longer. I cannot and will not walk well again they say, but I think that I will,  it came like day to night, one moment I could and just ignored the very uncomfortable  pain and then I was in this chair. I pray for some kind of God send everyday. More importantly I look for a remedy everyday.

I am an adult I know where there is no cartilage there is no cartilage, but oh well, I can dream can’t I ?  I have even played the mega millions. I need a ray of hope that seems attainable. I believe that there must be a way to afford a buffer or a fake cartilage. I am just kidding about the lotto I did buy a ticket and well with the law of averages I may  or may not have Murphy on my side, but it does no harm to try. I have to much to do and now that my husband is feeling bad I am feeling useless in this battle.

I saw an infomercial this morning that was geared toward the rebuilding of cartilage in the joints, I concede to you that it may not work in all practicality, but trying something is always better than just giving in to the words I heard last week and I quote (” you can get a government plan to help with you debilitating disease as you will eventually loose not only your ability to move your legs at the knee, but as the x-rays have shown us your whole body has this disease”). I asked if there were no prospects for a remediation to the problem, the intern went on to say that they can manage the pain very well for me. I don’t want a pain killer I want an address to the core of the problem not pain medication I said, he shrugged his shoulders and said ” wouldn’t we all”, he then wrote out the prescription and sent me home. I am angry at the little things that I cannot do and even more so at the large tasks that seem now insurmountable. The future that someone else has painted for me is unacceptable and an inconceivable one in my view.

I do not cave easily no, not at all after biting my lip and thinking on this I decide not to fill out the prescription  and take the road less traveled. I can continue research on my own and find maybe a natural way to address what my disease is doing to me. I do not like feeling helpless and I have made up my mind that I am not helpless, there are many, many, many things that I can do to over come the tasks that are overwhelming to me, and then there is the tenacity that has helped me come this far in my life. I refuse to think that there are no resolves to this particular problem. I dare to give up for it means that I will be where “they”  have put me, in the group that accepts all that they are told by a doctor and just accepts their fate.

I already have read more on the subject than I would have liked to, but I can always recall those firm and unrelenting words my mother shared with me through trying times. “Educate yourself my darling Lilly, for knowledge is power, knowledge can release a person from the grips of evil, and deliver a person to the yields of the earth if you are brave enough and can withstand the tides. If you can see past the bad and the things that block you from that view. Learn to look past the now and never just settle, learn what you are capable of achieving”. I did walk when all said I would not ever, and I played all sports when they said I would not ever play one, I emerged from the grips of a hellish childhood with love and yearning for a better life ahead, I did those things with out a doubt in my head  that I could not.

I often saw my mother broken, and deteriorated, beaten down physically, and mentally, and then when we all left and packed up and left him my father, he would find us and he would bring us back, to even a more horrific encounter than the one that made us run away in the first place. I do remember that my mother would make us go to school the very next day and would pack us a hearty lunch with notes  that would say “I love you, God loves, you and you love all of your siblings, this is enough to get any one through anything. My mother with her broken arm, or black eyes, or her hair ripped out in clumps on the ground would not ever send us to school with out a lunch.

I thought that she was not brave , but as I grew I saw her try  and try and try to leave until we all grew up and left. The days of long ago still fresh as if yesterday. I left last and slow I worked two jobs and went to school to save enough to finally leave, My father would take half of all that I earned and made all of my chores tougher, but I kept my composer and went along with all that I had to, for the dream of all that I knew would and could be different. I found that he grew ill and week and that I did not have to run I knew that my mother was to broken and old to leave.

I became a strong willed person with nothing but love for the new life that was on the horizon for me. I knew that there is as much good as there is evil out there and that I had the power to choose. I have been through and survived a broken jaw when my father punched me across the room for not being fast enough to get him a glass of water, I lost 3 molars and two teeth. I learned to chew at the front of my mouth, I have had six broken ribs, a cracked pelvis, a broken finger and a hairline fracture from one end of my skull through the circumference, the migraines were horrid. I did find natural healing and a mind set that would and has gotten me through a lot. I write these horrible things along with the good things for those who might care to know that all things evil do come to an end.

I have a decease so what, I feel that I can try to overcome the prognoses, yes this person who gave me a bad report on my health did not know the things that I have experienced in my life and the things  that have happened to this body, he just knows what he has studied and can only give me a prognosis from that prospective, If I am to be crippled by this disease it will not be without a fight, it will not be with out all of the knowledge of how to deal with what is to come, and it will not certainly be with out my giving in to concede that I have been beaten, and well that will be a clod day in ha-tees.

So for now I am in the chair more often than I care to be but knowledge is power and I am feeling a bit smart today.

Food For the Mind

Lilly’s Way  www.lillysway.com

My family and I went on a sort of vacation this week end, my husband travels from town to town and usually makes it home once every other week or so, and well you have to do what you have to do. I worry all the time about the road, the hotels,(bed bugs Yuk), and the drivers that aren’t so road friendly. This time when he came home I noticed how really tired he was and his next run was a whopping 6 to 15 hour drive to 3 towns in South Texas starting at 3 AM the next morning. The trip was stopping only after the first job was assessed, and then he was to set conditions, meet deadlines and keep all of the balls in the air while balancing the budget.

He accumulates a mountain of paper work for his verification process to each active project and when he stops at a rest stop it is usually to answer e-mails and tend to emergency task that require immediate attention. His phone rings at least once every minute so he gets no rest at all, Please let me say that we are very grateful for the opportunity to be busy and have work. The projects active at this time are 9, and when 4 shut down for the day the other 5 start the evening shift so he is on call and makes at least 1 appearance to each site by the morning, when the others start up again well I guess by now you get the picture. I have done this run before well into our 30 plus years together It is tiring, unrelenting, and extremely demanding.

When we were young and not so young just about a couple of years ago we always worked together, it was almost a manageable chaos. the work, the travel, the good and bad foods and the job site it self in beautiful towns, and in ugly towns, in a nice area of a city or in the worst you could imagine. Eventually when the summer came around all of us would go and help out on the trip. My children learned to drive on the trips, they learned an array of things like about how to travel, and take a phone message, where to go to the bathroom and most importantly where not to, how to greet people, how to find the nearest hospital in case of an emergency, what safety measures there were to take in consideration at rest stops, and gas stations, and the various hotels motels and places that rented rooms for the night.  I decided to make it a family trip and jumped in the car with him  last Thursday so he could ride and visit with the kids and I would drive.

The kids are now in the teens only one is eleven they have spent virtually every summer and vacation time on the road with us for the purposes of work, but my children other wise could know very little of their father if we were home all of the time. Traveling was some times nightmarish with toddlers in diapers, or ill and I will not bore you with the teething process on the road. Just so that we are on the same page as to my mind set for travel (I do not like it at all), but I will go and go, and go if it means that my family can learn that you can have a chance to absorb from each other the good the bad and the ugly and still come out of the experience with love and appreciation for each other.

My children never go to bed with out saying good night to us, they take the time to text or call their dad every evening. They even can guess what town he might be in by the time they go to bed. The way we have lived was never ideal and sometimes I could pull my hair out for the things that we went through on the road, but I know that my husband has had just as much of my children that any working dad can get He is very grateful for that. He a;ways says ” hey remember” something or other about their learning to walk or their first words and it is comforting that they can know him as well as they do.

I was non to happy on the summers and holidays that were in strange towns or a different state when it was just he and I, but when we took the kids, well they were challenging to say the least, but we were really to busy to notice the things that we did not like about the traveling. My children like all children liked to wonder and ask about every little thing they saw, their curiosity was never ending. They gave us a new perspective on our travels  and we just grew into this automatic packing and unpacking way of life. My oldest can name any model and make of almost any vehicle by 5 years of age. He would say hey mom look at the color of the 94 Chrysler that’s ugly don’t you think? I would just say oh I guess it passed me before I could see it (I had no idea then or even now what make and model a car is).

We have come to travel with a large cooler, our back packs, our own blankets, pillows, and very important our own individual music at least the kids call it music. We have eaten any where and every where and always try to take pictures for the sake of memories. we had a very extravagant meal on this trip I have to share this because it is summer and some of you may be thinking of getting out there to see this great state we live in called Texas. The place we ate at (if you like fish and shrimp) was called Kings Point off of highway 77 heading south before you get to Riviera on the left is a big blue sign it states you can travel to the water and than your there about 8 or maybe 10 miles in.

This was the best I have ever tasted and I grew up fishing I could scale, gut, and fillet a fish by the age of 8 with out so much as a blink, my mother hated the very smell of fish so my sisters and I learned to cook , boil, saute, bake and most assuredly fry fish by the book from any cook book we could find, we eventually added our own spices and had great recopies to share. So when I say that it was the best I have ever had it means a lot to me. The most succulent ocean scallops, the biggest gulf shrimp, the tasty fish itself left me in awe, but the start of the meal was a simple salad with a platter of big sturdy sliced tomatoes and the salad was covered with a whole sliced avocado and yet my tastes were challenged by their homemade tarter sauce nothing like it anywhere in Texas or any place else. I have been through most of the states in our country at one time or another but this was very different from what I know tarter sauce to be. It was a cross between a pate’, and a puree of a medley of the best combination of (you were not allowed to ask) the secret ingredients that you could possibly pallet.

My kids took pics by the water and ate until you could not eat another bite and the portions were so generous, you can only order by the pound no menus just great food by the pound trust me it was great. The prices were steep for our budget, but well beyond worth the price. I had to share this quaint restaurant because the secret is out the file of cars we passed on the way out of the parking lot coming down that long, lonely, seemingly your lost road was never ending until we got back to highway 77 where you should try to stop if you can for the best bite of fish and tarter sauce you have ever tasted.

We have eaten at many places that looked to be good and were not and places that looked as though you would not want to stop there, but you really can not tell a book by it’s cover. My kids now older and very knowledgeable talked about the food for the three days we drove and my husband slept all the way home. I am tired and want to get a little rest Today he is back on the road doing a little ring around the roses again for his work, maybe a little rested than before, and we just text-ed him what I made for dinner. I think I maybe would try to work in some travel this summer,  just another couple of months are left before all of our lives change again. The school runs, my son leaving and the daughter that wants to drive her siblings for me this year. My husband said that he knows things have to change, but he missed when the kids were little and it felt as if they would always need us to take care of them. I love that man and I can tolerate the road for him any day.

Food for The Mind

Lilly’s Way   www.lillysway.com

I am asked very often here of late first off why do I choose to write about the personal things in my life, and then the second most asked  statement is that I seem to change my point of view, I really and I might add rarely change or contradict myself. I write and I do believe that I have stated that it may be of use to someone, anyone for that matter to share what has transpired in my life. If I seem to change my view to something then the things in my life have changed to guide me to what will come next. Please remember I am living my life as I write what happens, so I must encompass all that applies to what I do next, or the way I feel next. I do not cater to someone else’s whims, or candor when I live what I live. I write about the day in “my” life as it pertains to me.

Every day is different and then by way of that avenue do I concede to what and how it will affect what I do. Am I predictable no, and by no means should you expect me to be so. Am I just fickled no I am not that either. I don’t ever see if my last day to write was offensive of just plain silly or even if I did not seem to be the same, because I am as different as the day is, every day. Oh and I thank God for that. I love to try things that I read about and I read every day. I want and hunger for the knowledge that could possibly be what I need that day.

Things are a world apart of thoughts from person to person. I think that there are as many different ways to live according to what one thinks as there are blades of grass on this earth and I do not think that I am all knowing and that we will all conquer with my point of view or with how, and what makes me tick. I do although think that if we share as human beings, we then give of ourselves enough that we may impress on  someone with the same conflicts, or triumphs that we are doing good to find those crossing paths. These thoughts and mistakes  make us who we are and they help us be what we are. It is the humane thing to share knowledge and to brighten someone else’s path from time to time with that knowledge.

I love that we have the Internet and that I can reach out to someone anyone and that they can reach out back to me. I read about the things that are important to someone else and I do not say oh that is wrong, for you it may be a rock solid point of view as mine are to me. In fact that is what draws me to sit and write , so that when I grasp a way to handle something or share how I did it. Life will keep on its track and time stops for no one. I have met so many people on line that I am a better person and I have grown in many ways from that connection. If you are willing to share I am willing to listen, but I hope you don’t think that I will agree with everything you say I most certainly know that you will not always take my point of view as always right.

Food For The Mind

Lilly’s Way  www.lillysway.com