Friday, May 3, 2013

Lupus Awarenes Month May 2013


I really need to make another effort to push my 1st book again. It is dedicated to those with Lupus, their caretakers and family, and all of those that support us with this horrid illness. I am coming to the realization that the "Wolf" secrecy in the way it effects our lives, our physical bodies in so many ways causes havoc for us and our doctors. I was at my physicians office early this week, and had a very long, and very worthwhile visit with him. In fact both my husband and I went for several reasons. One of those was due to the fact I have had this "abnormal" blood test now going on for several months, seemingly related to the double vision, and the marked weakness and pain the my lower legs, and from my elbows to my fingers. The weakness in both arms and hands I began to notice just a few weeks ago. But the pain in my lower legs has been there now for months. Some days so horribly bad even on all of the medication I am on, that I could just sit in the floor, cry, and rock. Yet, I know I can't do that. I have to just move on, through the pain, even though it is as bad as it is at times. Back to the visit. As we talked about the blood work, possible medications that might causes this issue, and why it needed to not be there are all but basically "normal" would be none in the blood stream. Mine is way above none. The subject of course since part of this visit is about my Lupus, and other AI illnesses, is just how complicated Lupus is, and just how very little, or how much it can effect someone physically. As he said some have a small rash on their skin or face, and that is all. Others could have any and all of heart problems, kidney, lung, liver, stomach, muscles, joints, skin, eyes, in other words almost everything on the body for some can or are effected. Thus that makes for a very difficult patient, when numerous systems in the body are effected, and trying to treat all of those, then can run into medications have unwanted effects, or them not being something that should be taken together and so forth. For myself, it also means, like many, any of the smallest of infections (as I has on Monday) can go from very minor to putting me in ICU overnight. My body is not able to fight off things like someone with a normal immune system. So, as I found out, I have a kidney infection. That is why I ran high fever Monday. For anyone else it was fine to wait until Wednesday to see the doctor. For me, I really should have called and been saw immediately due to the high fever. Fortunately, I knew that, but I also knew what to do to try and get the fever down, so I did that. When it stayed down on Tuesday, I felt fairly confident I could wait until Wednesday to find out what was going on. But, I also knew if the fever had continued or gone up, even in the night, I had no choice but to go immediately to ER. So, someone with these types of autoimmune illnesses are always on "watch" on guard for something that others would not be as concerned about. A cough for a normal immune system, may be able to wait a couple of days, but a cough depending on other symptoms, especially any that indicate infection for a compromised immune system means DO NOT pass GO, and GO straight to your doctor or the ER. Back to my post now, thus I really need to push this book, and I am trying to decide if I have enough for my 2nd one to be published now. I have less poetry, but I have many prose that will be 2 or 3 pages long for each one. So, even though I have less in number of pieces the book still will be over 100 pages in length. Plus many of the "prose" pieces that are not in this 2nd book yet, are ones I am going to use for my 3rd book, which will be a sort of autobiography about a look into my life and Lupus, illness, chronic pain, and how I have sustained being here without being insane yet. So, I am in a place of a deciding dilemma at the moment. I plan to get through what I have ready for this next book again over the weekend, and make a decision. If I feel I have enough material in it, then I will begin to ready it for publication. That will mean I make my DEADLINE on "Tattered Musings"!!!! Keep my in your thoughts and prayers as I decide what to do, and how to handle this 2nd book. I have a couple of things I learned from the 1st one that will make this next one better I hope. I also have a "logo" that Jim designed for me, that I will be using. I am excited about that. Thanks so much for all of the love and support... and have a wonderful weekend!



UPDATE!!!!!!!

I have made my decision that I DO HAVE enough material for my 2nd book! "Tattered Musings" :) I think I am going to make my deadline of the end of May. Still have lots to do to proofread one or two more times, and get it ready for publication! But, I am thrilled I have made it. Thanks again for everyone that has stood beside me, hand in hand... for you help to make it possible also...


Thursday, May 2, 2013

Feel Like It has Been Forever Since I was here

Wow, and it is already Thursday! How time flies when you are not able to do the things you want to do, or maybe it should be the opposite of that. Time should really be "slow" when you are ill and unable to do those things you enjoy or want to get done. Either way, this week has been a bummer in many ways for me.

I came down with "something" over the weekend, that I had thought was a stomach bug. My stomach was just upset, I was nauseated, could not stand the sight of most food other than toast, and a few sips of green tea at a time. But, I had this very "odd" thing that was happening to me. If felt as if each time I tried to up off the sofa on Monday morning, my muscles would almost "lock up". The way I can describe it is, if you are yawning, or let's say stretching, and it feels like your jaw is almost stretched too far and it wants to "lock up" for a moment, well each time I would get up, it was like that, only all of my joints felt like that wanted to do it. It was the oddest thing, and I guess the closest to what I would assume a "seizure" of some type would be. I was just extremely weak, other than the other weakness of I have had now for a few weeks, and just felt horrible. I did not feel "feverish" as far as having chills, or feeling cold etc. So, since I Never run fever, I did not think to even check my temperature at first. But, early in the afternoon, I decided to just check my temperature and it was 101.5!!!! For me that is very HIGH! I had wondered why I kind of felt, "out of it" like I was almost hallucinating... and it was due to the fever. That is also why my joints were acting crazy, the fever was causing me to almost be in a seizure type of situation. I cannot remember the last time, no matter how ill I get, I run temperature. Even with double pneumonia, or whatever I come down with the only time my temperature is a tiny bit high, which is very low grade at about 99.5, sometimes with a flare. So, that explained to me a great deal of the odd symptoms. Also it scared the hell out of me because due to me having basically 'NO" immune system between the Lupus and my medications, I am supposed to never not call the doctor or go to the ER right away with any type of fever. I can go from a mild fever to the ICU very quickly with my health issues. But, I knew I had a doctors appt yesterday (this all took pace Monday) so I took as much BC powder as I could (it has LOTS of aspirin in it) to try and fight the fever. It took most of the day to get it down. I was even putting ice packs on my neck, forehead, arms... to try and get it down. Finally late in the evening it came down to 99.5. I knew if I could keep it down, I should be okay until Wednesday. I felt like hell Tuesday, and even yesterday and today I am still not at my best. But I have another kidney infection! This is like the 3rd or 4th one in the last several months. I can't seem to get over them. I think it is just due to my immune system, plus I also think I have passed several small kidney stones, over the past few months. They hurt like hell but then seem to pass on their on after a day or so, thus there is no use in running to the ER or doctor, since all they are going to do, is put me on an IV and try to flush the stones out. Well, I can drink tea etc... and flush them out myself, as long as they are not too big. OF course if they are large enough, I will be at the ER. The at a bigger size are too painful to not go in believe me. I have had more than one in each tube at the same time. It took a MONTH to flush them all out. It was nuts!!!!
Thus, I am back on antibiotics, and thank goodness also got lots of things explained and cleared up about this high level of myoglobin I have, why that is something to be concerned about, and that is one "abnormal" test that "ANY" in your system is not good. Of course it is not extremely high, BUT if we don't find out what is causing it (which we may not), it could get higher and cause kidney issues, which is what I fear maybe already happening. I may have explained the myoglobin before. Myoglobin is a substance that comes from the muscles, when they are "injured". You usually see high abnomrality of this in those in "crush injuries", bad car wrecks or accidents where someone suffers a great deal of muscle trauma or even athletes that overuse their muscles to such a degree they actually injure them and thus it causes the myoglobin to appear in the blood stream and urine. Having it in your blood stream in itself is not "dangerous" BUT you will have muscles aches and pains, sometimes severe depending on how badly the muscles are damaged and how much myoglobin is put out. Also, certain medications such as "statins" which are used for cholesterol  reduction or for those that have had heart attacks, they put you on a statin. This particular medication can also caused an abnormal amount of myoglobin to be in the blood, and people that have this usually come in complaining of aches and pains in their muscles. it is not all that common, but it cam happen. Well, the bad part of this is that the myoglobin is kind of like "particles", so in other words it is larger pieces, not like a blood cell etc. So, when it meets the kidneys, which are like a "filter" to take out the bad stuff from your liquids in your body, those myoglobin particles can "stick" to those filters, the kidneys blocking the flow out "poisons" out of the human body. Thus, just like anything else that does this, it can cause kidney damage or even renal failure. So, that is why it is so critical to try and find out the reason for the "abnormal" myoglobin in the blood stream, and fix it to stop this from happening. For one thing, the patient is in pain due to muscle damage. For the 2nd you could be looking at potential kidney damage or complete failure. There are also other types of "Myoglobins" that they look for and appear with a heart attack, but this is different. Well, this is not a blood test that is "normal". Doctors do not usually in routine run it, unless there seems to be a reason to. So, my doctor did several months ago due to my all of a sudden, acute muscle pain, that was so abrupt and severe, he was looking for causes. First of all, he took me off my statin, thinking it was the cause. By the way, my myoglobin levels are high, thus abnormal. I found out, unlike some blood work that just because it is a little high, may mean nothing bad, ANY myoglobin appearing in the blood is potentially not good, so there is no thing as just a little or not the high etc. It should be none basically. Well taking me off the statin did not work. 4 weeks later it was still high. So, against all I wanted, he next took me off the muscle relaxer, which of course really caused me issues. I have such muscles spasms, that of course I am now hurting due to muscle spasms. BUT, I went to see my doctor yesterday, for several reasons, one was to straighten out this myoglobin issue, find out why we are looking at the amount being "not good", what that could mean or cause etc. Plus we also got the entire thing straightened out about my Diazepam the office, the pharmacy etc. So, I left fairly happen. I do have a damned kidney infection, which sucks. Anyway, if the myoglobin stays HIGH and does NOT change, then I get to go back on my muscle relaxer, because that is not causing it. IF it DOES go down that means the muscle relaxer WAS causing it, so I get to try different ones until we possibly find one that does not cause that to happen with me. Thus it is an ongoing process, and actually could be the LUPUS etc causing the issue, which is what Jim and I think. WE think the double vision, the myoglobin. the pain, etc are all kind of "together" and they are coming from "either the Lupus" or that they have not found out yet what is going on. I kind of think I may have another AI disease called myasthenia gravis. Just due to the double vision, etc... and some of the other tests that were positive in nature to this illness. But, that I guess we shall see as we go along. "Baby steps" with these autoimmune illnesses, because NO ONE really knows, thus it is sometimes the blind leading the blind in all concerned. Nothing to put down any professional, but none of us really know the depths that Lupus does effect and how. Hopefully with all of the good news out this week we shall see some great changes for the better in a way to diagnose, analyze, treat and possible stop or cure Lupus and many of these other AI illnesses.
Give a hand to the Alliance for Lupus Research!!! Great leaps and bounds they are making in the fight against this mysterious disease! May is also Lupus Month! So let's also try to raise awareness everywhere we can....
http://www.lupusresearchinstitute.org/lupus-news/discoveries/13/05/01/lupus-research-institute-tops-170-million-novel-research-lupus

Sunday, April 28, 2013

Our Time Seems to Be on a very Fast Train...

Oddly enough I just had this same conversation with my husband yesterday It will be Monday, and before I blink my eyes it is Friday, and I am trying to remember what I even accomplished. Even in a day's time, I feel as if the hours went by, and I feel as if I got nothing worth while done. When I tried to recall what all I did this week, I had a difficult time doing so. My Mom called yesterday just before we left for Dallas to get my pain pump refilled. She was kind of being a bit tacky to me, because she claimed she had not "heard from me in so long". Well, I spoke with her I know on Monday, and I believe Tuesday Also. I was busy (although I am trying to recall what I was doing) thus I did not go by to see her. So, she lays a guilt trip on me like I have not been by for ages... when I was there on Sunday, then spoke with her twice earlier in the week. Yet, when my husband and I got to thinking about it, I had been very busy. I had ran errands twice this week, and was out and about part of those days. I also did several "projects" or started them around the house, was trying to find a new pattern for another quilt, did some writing online, did all of the usual picking and straightening up, was on the phone several times with doctors, pharmacies, etc. about prescriptions, and just everything else that goes on in a days time... feeding the dogs and taking care of them, I cooked dinner several nights this past week, made a cherry cobbler, then made a banana coffee cake also. So, I had been busy all week long, but to me if felt as if the week was gone, and I got nothing done that I really wanted to get done again. I was talking also about how I cannot remember anything without notes. Everything I do requires a note so I remember to do it. Even taking my certain medications, I must make me a note and leave it so I will remember it as I go through my days. Another thing, that kind of goes along with this, is that I feel I have lost some of my ability to spell words correctly and so forth. As much as I write, read, am online etc. you would think the skills of spellings, using the correct grammar and so forth should be easy, but it is not. I find myself not able to spell some simple word, and it scares me that I have that kind of problem. Plus, I realize age does play a certain part in this... we tend to be slower at things as we age, we tend to not be as coordinated as we were a few years ago, thus we must slow down a little to avoid a fall, or doing something that might hurt us. So, some of what we go through is no different than others without the problem, but age is beginning to affect many things in my life and the way I do them. I also find that I "budget" my time now frequently. For instance, I will make a mental note of about how long it will take me to shower and dress, depending on if I do or do not do makeup etc. Then how much time will it take me to mix up that cake, get it in the oven, and as it bakes during that time, what can I do that is useful? Like ride my exercise bike, or do my walking etc.  Time since I turned about 48 or so began to just fly time. Around the time we arrived in Texas I started noticing that the hours, days, weeks, months and then years just are flying by. I went from arriving in TX in what feels like a very short time not long ago and having one new born grandson, to now him being in the 1st grade, the 2nd one born and almost old enough for kindergarten, and the grand daughter going from being a child to a teenager! It seems totally impossible my Dad has been gone now for 8 years, and we have been together over 10 and married 8. It feels like we just got to TX. Then I look around at the house, all we have done to it, all that has happened with my health, all of the surgeries, the illnesses, all of the doctors and tests.... and I wonder how we have endured it all. I am frightened that I will turn around once again and be my Mom's age, and wondering where my life went to (I already do that anyway) and what did I even accomplish?

We never quite realize just how quickly time passes us by, until we stand still long enough, take a deep breath, and truly give thought to all of the past years. How our lives have changed, how kids have grown up and have families of their own, how our parents have became "elderly" and don't have the same energy they had just a few years back. We see ourselves having to help them, rather than them take care of us. How life itself has changed, from technology.. we did not have microwaves, cell phones, computers, and many, many other "gadgets" when we were in high school. It seems as if that was only a few years ago. But, when you stop and really give thought to SO many ways our world has changed, it is mind blowing! As I just said, just in technology. Think about a camera. There was not a
"digital camera". There was film you had to have processed. There certainly was not a "flat screen" TV, or one as large as we have them now. Medical things such as microscopic surgeries, they had to open you up and you spent days in the hospital, now you go home after many procedures within a few hours. What about fast food? McDonalds, Wendys, KFC, TAco Bell, none of those existed. We had Dairy Queen and Dairy Mart... that was our "fast food". Cars ran 60 to 70 miles an hour, if that fast. There were no CD players, DVD players, video games, rice cookers, bread makers, everything was done, by hand the old fashioned way. And just a few years before we arrived for the most part, there were only black and white TV's and photos, no such thing as colored in those things, radios ran with "tubes" in them, we had no idea about "boards" in things such as that. You had a phone, that would cost a small fortune to call overseas, and it was "attached" to your home, and you certainly could not walk around the house or yard and talk on it. A key opened your car, not some remote. Now hell, a remote starts it, turns on everything, and you get in and it almost drives itself. Your "foot" was your cruise control. You had a transistor radio, no I-pod, I-pad, you read a physical book, not one off of a "cloud" computing system. Did not even know what that was. IF you needed to research something there was no internet. You looked it up in the encyclopedia.  Kids for the most part, walked or rode the bus to school, we did not get cars at the age of 15, unless we came from a very well to do family, or needed a hard ship license to work. Kids did work after school. Or we settled for a small allowance, because we had chores at home to do. Toys, wow, I can't even think about just how many changes there are there. From babies having "computers" now to nothing being left to the imagination, it is insane. Times have changed so rapidly... and there are many things that even my Grand kids will not know anything about. It is crazy....

I will say there are MANY things that have changed for the good. In medicine, leaps and bounds of research are saving many lives now. OUr technology has given us many great things added into our world. But, along with the good, is the bad. We are taking jobs away from humans, because machines can do them. We are polluting our air, water, land.... we can't even make enough food to feed everyone, due to more people living so much longer, plus we are taking up what we need for crops with concrete and steel so we have places for people to live. Our world now is a fast paced, ever changing chaotic place at times... we have more people that are insane and harming others... we are poisoning our own water and food with chemical agents... we are starving some in countries, while others are too fat from gorging themselves with fast food, and an unhealthy lifestyle. So, with the good, comes the bad part of it all also.

I have to wonder in another 50 years, what things will be like, or if we will even exist? Just things to ponder....


Friday, April 26, 2013

Five Living Presidents, Many Showing Their Care, The Bad, Good and Surreal

I think the word "Surreal" really fits all of the things going on in my home state of TX, of our nation, and around the world. It seems there is so much "bad" news, it is frightening. Plus, we just know that there could be more not so great situations happening with our nation if there is "hard evidence" about chemical weapons and their use in another country. Are we to the place that so much seems to just happen daily, that we are almost immune to the bad? So, often I have found either people hear something and they are horrified, or just the total opposite, people seem to think "Oh Well, what's new?" Nothing, nothing like what has happened over the past couple of weeks should be considered "normal". From the bombs in Boston, to the explosion in West TX, we should all feel we need to be "diligent" when we are out and about in our surroundings. At no time should be think in these days as they are "it is just a trip to the store". Or our town is small nothing will happen here. As we see sometimes that is just where things happen, in the "small town" settings where horrible things are not expected. No longer is our "bad events" thought to be kept for "large cities", but can happen at any time, in any small town or city, any where, where you least expect it.
You can bet that those in West never thought as they watched TV or ate dinner than within moments their entire lives would be changed forever. Yet, things can happen no matter where you are. IT is truly a "surreal" feeling to see things such as a building collapsed as in Bangladesh, and 100's of people have been crushed in this horrendous accident. Or take a look at West, when you think about a few tanks of something that would seem so "harmless" could cause such a huge explosion and harm so many, we just cannot fathom something such as that, even after we "see" it. It takes time for us to really "feel" and know it is true
I also think for us we have heard the ward "war" so much, it has come to be 2nd nature to us. The news is full of it, our nation is already in it, and had been forever. Yet, to know we could be on the cusp of another war, due to a country using chemical weapons against their own people, that should be something we take extremely seriously. That certainly is not some "war" once again, but something that is such a potential danger for our nation.
  Here is my post from FB this am about all of the news around our nation and world....

Gosh lots of things going on in our State of TX, as well as around the nation and world. It was an honor to see all of the 5 living Presidents and the First Ladies together. I would have loved to be there for the opening of the Bush Library. I am thrilled that it is here in Dallas so we can see it. A great deal of history was standing there yesterday. All of them for the most part went through some difficult times as President and as First Ladies as well. Then onto the Memorial Service in Waco for West, TX. It was something also that I thought about going to, but I knew with President Obama coming in, plus all of the security concerns with such a large crowd, knew it would be extremely difficult to even be anywhere close enough to see anything that was happening. Gosh, the line of fire trucks and vehicles; the first responders was just unbelievable. Our prayers are with everyone there in West. May they all find peace and ways to put their lives back together. I was out yesterday and a couple of our stores were doing things to take up donation to send to West. I though that was so awesome. Then of course we have all of the business about the surviving bombing man from Bostom and a great deal of speculation about the both of them might have been headed for New York to do much more damage possibly. We have this maniac, thank goodness. What concerns me is all of the other "home grown maniacs" out there that are just waiting in the wings, or making their plans to do the same or worse. I worry about chemical weapons, due to those being able to do much damage very quickly. Of course then Bangladesh and the deaths of so many in that building collapse. What a horrible thing to happen. Such a horrific loss of life, and sounds like many children and women. Then we have the Korean issues and all that is happening there. I don't think anyone really knows what to think about the ordeal. I fear just when we let our guard down a little that bunch over there could let loose one of those missiles or more. We still have all that is going on including Syria. That also is an ordeal that is extremely frightening. We could be right in the middle of that situation if chemical weapons are found to be used over there as we said we would not tolerate. So, there are many things going on as I write this that have effected a very large group of people over the entire world. Our nation is suffering from drastic weather changes, floods, droughts, and severe weather in places that never even saw some of the things they are seeing now. This world is having issues all over. It just seems things keep getting more horrific, with very little good news lately.

Wednesday, April 24, 2013

Either "Feast" or "Famine"?

We all go through stage in our lives that we feel overwhelmed with LIFE! During the holidays, at the start of a new school year, a new job, the birth of a child, kids in sports, and the list of things that make life busy go on and on.
Then, as we grow older, kids grow up, they move out, we possibly work a part time job, or retire, or as myself become too ill to have a job, thus things you would think slow down. Yet, that is so far from the truth. No, we don't have kids in sports, new jobs, new school years, or thing such as that,, but we still have the "bus-i-ness" of life.
With chronic illness that part of business seems to be quite overwhelming in other ways. For me, my "list" of daily or weekly things to do seems longer and longer, while my energy, or lack thereof, may I say, seem to make it even more impossible to finish. You tend to move into doctors visits, making sure your medications are filled properly, insurance claims are taken care of, and your own personal things are handled. We still have bills to pay, we still have groceries to buy, we still have cars to inspect and/or register, taxes to pay, etc. and so forth. So, even if you are growing older, or are dealing with chronic pain and illness, life in any form remains busy in one way or the other.

Also, there comes a time in your life that things that were important, are not so much anymore. Yet, now other things are much more important, and need to be kept up with. When we are young, running around with errands, kids, jobs, and so forth, all too often we feel invincible. So, we may not eat properly, or exercise right. Maybe we don't take medications are we should, take care to guard against the sun, and feel like those things are not that critical. Yet, as you grow into those upper forties, and then into the 50's; NO we are NOT OLD by any means, BUT we feel the years behind us settling into our bones, and how it is effecting us now. We maybe slower than we were, and have to make sure we give ourselves more time for a project for instance. It takes me twice as long to get dressed up as it used to for instance. Two reasons, of course age just slows you down, you also have this "thing" about trying to remain youthful, thus things like skin creams, taking care of your skin, your hair, all of that is much more important than when you were younger. You put on sun block, you use special lotions and creams on your face and skin. You may have to color your hair, or have it cut a special way so it is easier to manage. For me, I have waited now for 15 plus years and got a wild hair to let my hair grow out. Which was really stupid in a way. It takes me so much longer to do anything with it. It requires a great deal more management than when it was short, and believe me, I am truly thinking about having it all chopped off again in order to make my life a little easier. IF my hair is short, it cuts 20 or 30 minutes out of getting dressed time. With it longer, it has to be conditioned more, brushed more, dried, rolled, sprayed and so forth. IF I were not so busy with that, I could have my makeup on, and be out the door much quicker. As it is now, half the time it takes so long to do my hair, by the time it is finished, I am saying to heck with the makeup, I am just running to the market, which I used to NEVER DO. But, you get to this point you know you are either going to have to let something go one way or the other. From pain to energy loss, or lack of energy, you feel like you need to put forth what you have in the things that are really important, for instance GOING to the store! IF you have spent an extra 30 or more getting dressed, then that is just more time you could have have doing something else more important or that you wanted to do.
I find that I am guilt of feeling as if I "procrastinate" more now. Used to, when my mind was made up to do something, it got done. Now, I may have several things going at once, yet I can only put forth effort to one at a time. For instance, if I HAVE to get out and run errands, and go to the store, then I have to put my sights on that, and get that done first. Then, if I get home, and after putting things away, I am still up for it, I can do a few things in the house, or outside that need to be done, or that I want to mess with. Used to something like re-painting my kitchen cabinets would be no big deal. Now, I want to think it is not that daunting of a task, but in reality, with my arms so weak, and this shoulder like it is after being replaced, that is much more of an ordeal than I am trying to make it. Which sucks! None of us want to get to the point we feel we can't do something. Whatever it is, little or big. Used to I was your 'Ultimate DO-IT-YOUR-SELFER."  If it needed to be done, I could and would manage to do it myself in my home. From installing a new water heater, to handing a ceiling fan,  I did it. If I wanted something done, I was the first one out there working on it. I loved being able to do just about anything at the house. It saved money, lots of it at times, it saved time, because I did it when I wanted it done, and I was always proud of redoing my walls, completely remodeling my kitchen, to hanging ceiling fans in every room of my home. Now, many of those things I just have had to admit I can't do. No longer can I hold anything up long enough, to put a ceiling fan in. My arms just won't let me, not this "new shoulder". I will never again have that much strength and endurance to allow myself to do that, and it sucks. I can't get out and hoe, rake, and make an entire flower bed on my own. Hell, I can't even mow my own lawn anymore, and that used to be one thing I loved. That was mowing my lawn. But, there is no way my arms, wrists and hands will let me be shaken around, Besides I just once again l have lost lots of my strength and mobility due to the shoulder replacement, and my neck surgery. It is not worth it to be injured again; although, I admit I miss it terribly. Yard work was always my own "zen". Thus that space has now been "open and raw" where I must find other things I CAN do and feel useful. So, I do my own "indoor" gardening. I have my home full of indoor plants, that require a great deal of care also. So, they help take the "disappointment" of not being able to work outside away, and make me feel worthwhile. I know houseplants are wonderful for the air, environment, plus they make a home beautiful. Then in the Spring and Summer, I set them on my front porch, so they are outside a little, and I tend to them there, thus I can be out for a while, with sunscreen on.
What my point is with this post, is that we move from one realm of life and being busy in one way, thus as we grow older, our lives are still busy, but we slow down and they remain "hectic" in other ways. I have overheard others feel that their elderly parents or relatives are not "useful" as they once were. I have also heard that about those like myself that have chronic illnesses. All of that is just untrue! Each of us serve a special purpose here, and just because others don't acknowledge it, you should always feel it in your own heart. but, that is just not as easy as it seems. When your life is totally flipped upside down, by things such as a chronic illness, or a severe accident, it is very difficult to try and erase what you know, or at least put that memory behind somewhat and begin all over again. It is always much easier to "think" about doing something differently than it is to actually do it.
When it comes to a huge change in your life, making those changes effect everything about you. From the way your feel, you think, from your actions, your thoughts, the way you do things at home or in public, everything changes. You also think about all kinds of things that before you had a chronic illness or before the chronic pain set in, that before never entered your mind. You feel as if you must "plan" for the worst and hope for the best. Even if you are just making a day long trip and will be home by late evening, what you used to now be concerned about, now all changes into different concerns. It is not just about turning off the coffee pot or leaving a light on for the puppies. You must think about your pain or illness, and what medications you may need until you get home. Whether it pain medication of sorts, or other medication, you may have a routine with those meds you must adhere to. Maybe it is what you wear, if you have issues with pain in your legs and feet, or taking shoes to change into or out of when you get to where you are going. It maybe that you need to eat at a certain time, make sure you drink a certain amount of water, tea, etc. For some, even a 2 hour ride means a stop along the way. You can't handle two straight hours in the car without a stop and break to stretch. Sometimes it is things like making sure your have your medication list, your illness list, or like myself I have a medical device, which means I CANNOT have an MRI. OF course you don't expect to "need" one before you get home, but in the case of an accident, you must have something with you that says that you cannot have an MRI, or at least you have something special that they must take into consideration. Some medications require being kept cold. Now usually for a day trip, it is not necessary to worry about that. But, if you are going to be gone for a couple of days, that maybe important, thus you have to make arrangements to keep your medication cold if that is the case. I won't go into all of the details about a long car vacation, etc. That gets way beyond just a few hours in a car. but, just that in itself gives you an idea of other things we must consider before we leave the house. I have a device that controls my implanted pain pump. I have to take that with me to use every twelve hours. Even on a day trip, I will need to use it usually before we get home, at least once. That of course is on top of your usual items of how to dress, what jewelry to wear, do you have everything you need and so forth.

Since this is a long post, that actually began yesterday, I am going to add to it, rather than make a new post this morning. On Facebook, I had written this morning about feeling, "out in left field" I guess you could say. It seems that no matter what kind of thing life brings to me, I never quite feel I have done, said, etc... what life wants me to. I can't seem to feel "fulfilled" with my own self. Even though either it is overwhelm and chaos, or almost bored to tears with the same old thing, I never quite feel I get "life" right. Other people, all around can try and convince me otherwise, but like anyone else, I must feel that within my own self in order to really KNOW that I have done what I think I am here for. I kind of feel as if I have wandered through life, haphazardly, one way, then the other, never really following that true path I was put here to go on. All of us I absolutely think in my soul, have a very solid purpose for being here.For many of us, it is easy" to fall into the pattern of where life has been cut out on the dotted lines for us. for others, and I see it especially in those like myself that once "thought" that pattern was completed and being sewn together, then illness or pain strike, and it seems our "seams" take an entirely different direction within the fibers of life we have sewn together.
Much like a quilt, and I can think of life in that way. Many quilts are very stringent in their patterns. You have a certain amount of this particular piece you need, or pieces in certain colors. They must be sewn together in a certain way or the quilt will never look like it did when you first either saw it in a magazine or online. Or if you had pictured it in your mind one way, thought about and began it; then all of a sudden you bought other material, changed your stitching to a different type of stitch and a different color of thread, and put all of the "new" material and stitches into the "original" that you began. It may be beautiful, but I can guarantee that as beautiful as it s, it surely won't appear to be anything like what you first pictured out. Colors have changed, patterns have changed, stitches are different, and thread is totally new. Thus so is life very much the same when you all of a sudden embark upon a "maiden" voyage of life setting out with one strict way to go, and you take a "short cut", or decide to go around the long way, it will not be as you thought it was. Both of these, the quilt pattern, and your maiden voyage in life can be changed, be enriched, switched, changed, moved, made more difficult, and may not look or feel a thing as it did when you first began it many years before.
We all know that we must deal with changes in life. Whether it is an illness, or a marriage, divorce, birth of a child, buying a new home, selling a home, whatever that change may be, at first it is very different from how you pictured it to be.
But, when you are dealing with a great deal of the "unknown" even more so do those things change in such dramatic ways. What seemed so menial of a change, can turn into a huge ordeal. Yet, we learn to deal with them.
The entire point of it all, is to try your best to "roll" with the changes. Rather than fight them, or try to hold back again that current, you are sometimes far better to allow the waves of life to just flow over you, and often you will see what appeared to be so terrible, could turn out to be even better than what we had planned in the first place.
It remains a very difficult thing to have your entire life uprooted. Like the people in West TX from at one moment, they are eating dinner, to the next, their homes are entirely destroyed. Or those that lost their lives in Boston. Innocently minding their business, running a marathon, and the next they are on the ground, with shrapnel in them, just within a breath's space all of their life they knew, had changed. From the families that lost their children to a senseless shooting, to those that fired on people sitting and watching a movie in a theater, all within the time it takes to blink your eyes, life can forevermore be changed. It takes a drastic toll on those involved, as well as those around. Even us as "strangers" feel the torn tug on their hearts and ours, and the devastation that will be there from the one moment those bullets left those guns to the moment many of those parents take their last breath on this Earth, their lives will never be the same. How could you not question "What might have been?"

Thus so is the way chronic illness and pain takes its toll on your life and those around you. Forevermore, life is never the same.....





This is a post from Facebook on 4/24/2013 that kind of fits into this entire blog post also....

I am so "discombobulated" with life, I am not sure what the hell I want, don't want, want to do, don't want to do, and that goes on and on. It seems when things are a screwed up mess, that we have 50 things going at once, we are running here, there and yonder, I am stressed to the max, all I wish, is that crap would settle back down into a whatever "normal" routine as it should be. Then when things FINALLY settle a little, and I can "see" through the dust of life, then I feel almost bored with the damned everyday, same old routine, day after day, morning after morning, then I see that my life is just one foot in front of the other, I wake up, I deal with the pain, I drink my coffee, feed the dogs, change their paper, come here, and look at the news, the weather, then FB, and email.. and so forth. Nothing really ever changes in my life, I just get "veered" off the same path some for awhile, then it all picks back up into the vicarious cycle that I live in. I live through others I think. I live through my daughter, and all the excitement in her life, or through friends and the things they do, that I don't. I live through everyone else's life that seem a hell of a lot more interesting than mine. Of course when once again the severe pain sets in, or I am not well again, or I have a dozen doctor appointments, etc... then I will wish for things to be BACK to that "normal" boring life I had just weeks before...LOL!!! As the Steve Earle song goes "I Ain't Never Satisfied" and that is the truth for me... it seems whatever, wherever, I never quite feel "satisfied" with my own self. Not my "life" I guess I can say I feel fortunate in many ways in that respect but more about who "I am", what I should do in life, who should I be?, those types of things. I try to find my "way", and right now I feel I am almost at a crossroads, a place where I need to do something, go a different path, make a turn, get out of the middle of the damned road, and find where I am meant to be. And I don't mean in a "physical" state of where I should be? But, in my own inner state of mind and soul... I feel I have either lost some of that, or never really found it...

Friday, April 19, 2013

How Much More Can Our Entire World's People Handle?

Lord, where do I begin? From right here in my own "back yard", to the events overseas in not just the Asian part of the world, but throughout many other part of the foreign nations, there is utter chaos. If you PAUSE, but only for a brief few moments of your precious time (and that is not facetious, our time, we truly should consider precious), and truly think about every horrid event that has happened since December 2012. IF I have that date correct, it would be specifically the 14th of December, which in the small town of Newton, CT, it was a morning that began as any other morning for the small kids and their families, anticipating the Christmas Holidays. I am sure most of those Elementary kids had their minds on getting out for the holidays, having their Christmas parties, exchanging gifts, Santa, and all that Christmas represented up until that fateful morning.Then, a "human" if you can call him human, took all of that away in a matter of moments. Within a few earth shattering minutes, the loud and reckless hail of bullets forevermore changed the lives of so many. HE took many, many lived, and totally turned other lives into something that many shall never be able to have back. The sense of security and innocence of kids, the holidays, those that will never grow up to become all of the incredible people they were to be. Their families forever also torn and crushed. Hearts broken, and they must at times be full of anger, resentment, and pure almost a hatred for not maybe the man, but HIS actions! No one may ever know why. They can guess, but he took that to his own destiny, locked away until we see the coming of Angels once again.
That was enough there to knock us all off of our feet in this nation. Yet, that was only the beginning of a very long string of events that are shaping, molding, wrecking. tearing apart, leaving broken up in pieces and changed until we take our last breath. We have the events here in TX, just a short drive away from my home town, in Kaufman TX that seemed almost too surreal. No one would ever suspect during the middle of a weekday morning, in a small town like TX, for an Assistant DA or anyone for that matter to be literally gunned down right in front of the court house! Talk about being "terrified"! Then the judge in Colorado killed in cold blood standing in his front door way. Then before you know it, again in Kaufman the head DA AD his WIFE are shot in cold blood at their own home, during broad daylight. Talk about someone either totally nuts, or just too stupidly brave for their own good, which was great for our law enforcement to now not just have caught one, the shooter, but his wife and another guy, all three involved in those slaughters of human life!
What is so horribly sad about these events, plus those that follow, is we are almost "immune" to these acts of violence and terror. We have became almost complacent about our news being filled with rage, horror, guns, violence acts of neighbor against neighbor, with NO remorse. Then most of these psychotic people are so damned much of cowards they take the easy road out and either kill themselves, or fix it where they go down as some kind of martyr's in a "hail of bullets from law enforcement". Or these that "blow" themselves up for the sake of some "Higher Power" they worship. They are no martyr's but a bunch of chickens, who have no remorse, no regard for human life, not once ounce of "decency" or morality running in their veins. I suspect many of the have "ice water" rather than blood that pulses through their bodies. I cannot fathom a flesh and blood human performing some of the most radically nightmare types of actions we have ever known as if it was child's play on a play ground. It is pure insanity. These people have more than a screw loose, more than some psychotic break, more than anger or rage. There has to be something to describe them over and above any kind of description we have had up until now. Words such as deranged, lunatic, nuts, crazy, insane, mad, demented, certifiable and the list goes on and on, none seem "strong" enough to describe what these "people" are.

From there we also see not only the things going on all around us on our home land, but across the ocean from us stands another crack pot, nut case, that has the possibly capability of not just maiming or harming, but literally killing hundreds of thousands of people, including us! This young man, someone who you would think just by looking at him, his wife and him together, talking about basketball, was some Korean person, also going about his life. But, boy is that ever far from what is true! This man has to possibly be as close to a devil as their is. Brain washed as those people are, and the hatred they have for most of the other part of this world, is hard to grasp. Yet, one man, around 20 years old honestly holds the "purse" strings to whether we live or die. Whether we are blown up with something that the bomb itself is bad enough, but the radiation would be the end all to the rest of this world. How can one person feel they can justify having that much POWER? Any "normal" everyday sane person certainly does not. Most of us do not even like to kill a "bug", and often times let things go like even snakes etc, due to the fact, first of all we are not killers, and 2nd of all, they are here for a reason, just as all of us. Which comes to the subject that all of us are asking, How could "God" allow these people to do these things or even exist? Well, all is written and it is destiny. As horrid as they are, their particular "purpose" is being fulfilled just as we have been told for many hundreds of years.
We don't understand it, but all will come to light, at the end of times. I am NO prophet! I am NO predictionist. BUT, in my OWN OPINION, the "beginning" of the end has began, and we see the signs all around us.
Not only in the ways above, but in the greed, the lack of empathy, the lack of care about our neighbors, friends, those around us. There is no remorse, but only a growing violent state everywhere you turn. Whether it be on the television, radio, in a game, in a newspaper, online, in your town, around the globe, nations and people are rising up against one another, for MONEY, GREED and POWER! Those are the three EVILS of these times.
Now we go onto "Mother Nature". Of course we play a huge role in "her" actions also. From droughts to floods, to record amounts of snow, severity of storms, more violent weather conditions, the ruination of our crops, our water, soil, and air. Our polar ice caps melting at a phenomenal rate. Our entire bee population dying out, and the scientists are not sure why, but they do know what shall happen if we lose all of our bees. They are one of the most important parts of our ecological system. Without them this world as we know it shall not be able to exist. Look at the wild fires taking thousands and thousands of acres of land, while the ice caps melt causing land that was never covered in Ocean now to be completely under. The number of horrific thunderstorms, producing more tornado's, more violent that ever before, dumping HUGE amounts of rain in one part of our nation, only to have severe drought conditions where no crops will grow, no animals can be sustained, and causing us to lose many of our precious insects, animals, and so forth that again help sustain life as we know it. The hurricane's force and the length of these just get more huge by the season. City after city totally destroyed by the strength of these massive storm systems, that cause snow, rain, hail, flooding, run off of land, changing the very way our beaches look forever, sink holes, avalanches, mud slides, and the sinking of places into the ground due to the way we have either "feast" or "famine" when it comes to rain and dry seasons. Our seasons are nothing as they were even 20 years ago. You often cannot tell the difference between Spring, Summer, Fall or Winter. I know right here this past Winter basically was non-existent. Which means lots of bad things for us. Not enough "cold" weather leaving all of the "bad" bugs to be way over and above normal to control. The trees, grass, bushes and such are all confused, blooming out either too soon, or not really even "resting" for the Winter season. We went from a "fall like feeling to almost a spring time" from November through April 2012-2013! It is crazy. We get up to put long handle pants on only to change into shorts by the afternoon, and by early morning it is in the 30's only to be 50 degrees hotter by that afternoon!!! The massive change have a drastic effect on our bodies also. We have interrupted sleep patterns, and an entire host of issues, physical, mental and emotional that the slow, but progressive changes in our weather patterns and seasons continue to cause us. From severe allergies, that you rarely used to hear of, to all types of other health issues, much of those could point back to what changes are happening around the globe.
Then, we come to this unimaginable explosion in West, TX. The date April 17th, that shall be a day that not one soul in that town of about 2,600 will ever forget. Lives once again changed forever. Plus all of the lives in the surrounding places of TX, and across the US, that shall forever be touched in some way by this test of what we as humans and Americans are made of. One moment you are sitting with your family at the dinner table or settling in to watch your favorite TV series, and the next your home is gone from around you! Unless you have experienced that, I really think we just cannot grasp the magnitude of what that entails. As much as we can try to empathize and come to the aid of all of those souls, and also give much, homage to those that braved going in to help, not knowing they would never come out. The community here in my own home town is also drastically effected due to us being kind of "kindred" spirits due to both being huge Czech communities. We both have our HUGE annual festivals, our Polka Festival at the end of May, and they have "West Feast". Thus I am sure there maybe those here in my home town that have loved ones directly effected by this nightmare. My prayer is that they find the cause, and also I can't help but wonder if some body "set" that first fire. That is state of thought, that I am sure many have had. It to me is almost natural to think that way, after all of the terrible things people have done to others lately, thus anything could happen. It could be someone out for "vengeance" . We certainly hope not, but anything lately is possible. Also TODAY April 19th, 2013  marks the 20th anniversary of the "Compound" of David Karesh, which is extremely close to where the explosion at this fertilizer plant took place. Oddly enough, that compound went up in a ball of flames, but much worse, due to the very nature of all that person thought "he" stood for. It is sad till this day, that many innocent people, including children lost their lives to such a senseless man.
I am not "leaving out" Boston and the bombs at all. Yes, I reversed it a little. but, since that situation is just another one that is difficult to fathom, and it also ongoing this morning as I write this, I wanted to put in further down here, in my post. How any two (or if there are more) "normal" two looking young men can decide to put two bombs, MEANT TO MAIM AND KILL people like that anywhere, much less a huge event such as the Boston Marathon is beyond my comprehension! Again, Greed, power, stupidity, hate, evil, insanity??? What the HELL drives someone to such a horrendous act against their own people? I am just stunned until even now as to why? And I don't care why they say they did, NOTHING, I mean nothing could make me think any of these horrid, senseless, devil like, evil acts, NONE of them have ANY justification!!!!! NOT ONE SOUL CAN JUSTIFY WHY THEY HARM AN INNOCENT PERSON! And when you do it in the name of your "god", then that is even worse.
There are of course all kinds of opinions, speculations, rumors and such flying around about all of these. There are also many more things that have taken place lately that also are crazy. The open fire in the movie Theatre. Shootings on College Campuses. Guns brought to schools or places they don't belong. The MINUTE by MINUTE KILLING of innocent lives in CHICAGO, and on  many streets here in our nation, and across this world, all senseless, all uncalled for.
WE need a wake up call, and we have gotten several very strong ones as of late. I HOPE, we are ALL SHAKEN UP, not just a little BUT A GREAT DEAL IN THOUGHT about all of these horrible acts, plus many more going on daily. Abuse, and every other thing that is just screwed up in our world. People, we need to rise up, and put an END to this violence.
You see many good deeds through all of these things. Those that are giving up their lives to help others. Running into a bomb zone, fire zones, shielding someone else with their own bodies against gun fire, and all of the ways people come together to rebuild homes, cities, towns and lives. To those I commend each of you. It does show we DO have some reason BEAUTIFUL PEOPLE in our country! May we all find a place to fully feel all of the nature of events good and bad. May we find peace inside, that can shine on the outside. May we also look to the heavens and pray for all of those hurting, and for all of our world, that our Higher Powered shall help dry the tears.

Thursday, April 18, 2013

PAIN!! The ONE thing I HATE to have to write about is PAIN!

PAIN! such a short 4-letter word (and when I say four letter, it may as well as any and all of the Curse words - from sh*), f*c^, damn, hell, crap, and all of the other ones you can possible think to be "bad".
This morning I cannot even begin to try and describe the MASSIVE, and I mean MASSIVE amount and intense PAIN I am in! I awoke at 4 am, with a couple of things in mind! Blow my head off, Eat some rat poison, jump off the house, I am too chicken to cut my wrists or take pills, or any thing that would STOP THE DAMNED PAIN! It is insanity at its finest! I knew three days ago, "it" was coming. By "it", I mean BAD weather, thunderstorms, high humidity, and the works. I also know that the pain I was already in was going to be at least as strong, if not stronger than the winds of the thunderstorm, intense as the black clouds that rolled in, huge as gold ball sized hail stones or larger that could fall, and then that "rolling" thunder, as you look up into the sky, never wanting to see the "funnel" of hell coming. Well, I have that FUNNEL right now. The dreaded Debris funnel, that consumes it all. Well, this PAIN is that funnel cloud at a 5 on the scale. The "scale" they use to describe pain, from 1 (which is the least) to a 10 (which is the worst), at times with "chronic, gnawing, relentless, burning, moving, pulsing, never leaving pain is not enough to describe it. For an attack of "acute pain" it is perfect. It tells the doctors just what they need. BUT, after someone has already almost grown "accustomed" to an "everyday" type of excruciating type of feeling in your body, that 10 often seems like not nearly enough for the accurate description of the woeful, agonizing, torture we go through.What makes this even worse, is many, just like myself, will do ANYTHING, try everything, have listened to others, and tried sometimes even "home" remedies, everything over the counter, natural treatments, ridiculous treatments, as desperate as you get, you will stand on your head (if you could) on your roof, twist 4 times, call upon the little green men in the sky, and then hop on the next bus to Timbuktu if you thought it would just FREAKING END!
Pain, yes is a STATE OF MIND, along with the physical realms. "Acute" pain, even though just as horrid as chronic as far as hurting, like kidney stones, gallbladder attack, a broken leg, and so forth, they HURT like hell! BUT, you know that after it is "fixed" the pain will eventually cease. It will go away, and you are rid of it. So, it is a great deal easier to bear, when the cross is temporary. But, when you know every day of your life, you face the possibility of that dragon once again surrounding you, it becomes a cross that is almost impossible to bear at times. It is like the difference of dragging a one pound weight up and down your driveway, versus dragging 400 pounds of weight up and down your driveway. It gets to where you wonder if you can even face it one more time. You know, it maybe gone for a day, an hour, a month, months, even years people have a reprieve from these types of illnesses that cause the night terrors of pain. Yet, even if it has been a month, you absolutely know it will BE BACK!
This is where it plays on your mind. IT is almost identical to "abuse". Once your have suffered at the hands of someone that abuses you, you always are looking over your shoulder, your mind knowing it could happen at any time. Well pain is just that. It is like a stalker in the day, the night, it does not care if you are at a party, doing chores, having fun with your family, or driving off on vacation. Pain does not choose to wait until after the holidays, or wait until you are not at work or on a project due right then. It has no boundaries when it comes to when, why, how, what, day, night, summer, spring, fall or winter. It cares nothing about anything else that goes on in your life. It just springs upon you like a cheetah would its prey. So, when those that possibly cannot comprehend "our pain" and how bad it is, unless they have experienced being "held captive" by stalkers, or abused, it would be difficult to really give them the entire picture of what life is like. I often hear, but "you look good"... well, as I just explained this week in fact, when it finally gets to the place, I cannot take it any longer, sometimes that is when, even though I would rather crawl under the bed and stay, sometimes I just MAKE MYSELF, get somewhat dressed, fix my hair and shower, take a very SMALL list to one of the pharmacies etc that have a good sale and I have coupons, and I literally make myself go. It hurts, it is all I can do to keep from sitting down in the middle of Wal-Greens and screaming, crying, begging, anything... if it would just go the hell away!!!! As I told her, when it sometimes is really getting me so far down, I go out, I TRY TO BE PLEASANT, I try to carry on a little conversation (thus it is great in a small town to go to your local pharmacy, where lots of them know you, and you are able to chit-chat a little). They all know my situation. They all know that I am trying my very best to put the best face forward I can, and in some tiny way, it is a therapy at times. It does help to take my mind off the pain, even if only from the time I get out of the car, go into the store, shop, check out, and then want to cry when I go to my car, for a brief amount of time, I almost felt "normal". So, when you KNOW someone around you that is dealing with a chronic illness/pain situation, just because they are out at the market purchasing their groceries, certainly does not mean they are well, or they maybe hurting like hell, but like myself, they will do anything to just take my mind off of it, if only 10 minutes.
Thus, these past days have been those for me. Yes, I went out for a brief time with my Mom yesterday. She needed a couple of things from Wally-World and  needed my quilt batting, thus we went. I felt like hell, but I MADE myself go out there and get out of the house for a little while. I wanted to get some material cut for a new quilt top, but I just did not have the tenacity to find someone first to cut it, then wait while the lady that cuts it there takes her dear old sweet time cutting a 1/2 yard of like 10 or 12 different materials. Thus, I got my batting, we picked up the couple of small things Mom needed, and by then I as ready to come home. So, just like this morning, which was torture that I cannot explain due to that the thunderstorms are rolling through, Thus the temperatures dropped about 25 degrees in a matter of an hour, and the humidity is out the roof, and it is pouring rain, and thundering, lightening, and just generally awful BUT, we need the rain! So, for that I shall not gripe.
Yet, it is reeking havoc with my muscles and joints! Every joint on me, even the ones that are REPLACED!; yes, I did say my "artificial" joints HURT! It is no different than someone who loses a leg, etc. You have that pain, even with the limb gone. It is true, and it does happen to us with knee and other joint replacements. They hurt sometimes as badly as they did before surgery, when the weather decides to really act up. So, from my toes, to my ankles, up my legs, through both arms down to my wrists, and fingers, then shoulders, up to even my head, of course, I have a migraine no doubt. Everything possible just hurts. It burns, it aches, it throbs, any way you want to describe it, yes, that is how painful it is.
So often I try to make this blog about "everything else" but pain and illness since I fear people will get bored to death with the same old crap. I can hear it echoing in my brain right now, "Gosh, all she does is gripe, bitch, and moan about pain" and then she is always talking about everything wrong, how many doctors she has been through, medications, surgeries, etc and so forth YET, that is EXACTLY what I wanted the entire thing to be about, or let's say, for the most part, my blog, my book, all of that is to give others out there, that are facing so many of the exact same things I am, or do, a "light", some hope, a little faith, some knowledge, ways to help you and others, ways to survive the ordeal of chronic pain and illness. It is a FULL TIME JOB BEING CHRONICALLY ILL! That is no joke. Anyone that has many issues that they must see doctors for and take medications, or have tests knows exactly what I mean. IF you are not AT the doctors, you are making appointments, going for tests, blood work, fighting to get the insurance to pay or get the doctors to file it right with the insurance. Or you have to get prescriptions filled, and wait for the pharmacy if you need refills and an okay from your doctor. Or again you are on the phone with the insurance company trying to get them to pay. If not, then you are possibly needing a new type of doctor due to a new symptom, so you must go through all of the entangled web of paperwork, and dealing with a new set of people in the business office, the nurses, and the doctor. Or possibly you are dealing with having a surgery, getting well from one, or thinking about why you feel so bad, and wondering if there is something new wrong. Then you maybe waiting on test results, that you have called about 5 times, and you still have no answer. That list goes on and on also. It is truly a mesh of a ball of thread all waded up, and you spend your time when you feel like it untangling all the knots that are in it.
Now, that does not include your "usual" life affairs, home, family, job if you have one, kids, school, cleaning. So, you are doing a double take for the most part, because there is always something that needs to be done.

I am not sure exactly what I wanted to relay over to you this morning. My first thing was the extremely painful time I am having, and then it all of the ways to try and deal with it. Then what it takes at times just to deal with daily living.

None of us have it easy for the most part, and many of us deal with so many other things on a totally different level, all the while. we are sick... daily....
you are able to chit-chat a little). They all know my situation. They all know that I am trying my very best to put the best face forward I can, and in some tiny way, it is a therapy at times. It does help to take my mind off the pain, even if only from the time I get out of the car, go into the store, shop, check out, and then want to cry when I go to my car, for a brief amount of time, I almost felt "normal". So, when you KNOW someone around you that is dealing with a chronic illness/pain situation, just because they are out at the market purchasing their groceries, certainly does not mean they are well, or they maybe hurting like hell, but like myself, they will do anything to just take my mind off of it, if only 10 minutes.
Thus, these past days have been those for me. Yes, I went out for a brief time with my Mom yesterday. She needed a couple of things from Wally-World and  needed my quilt batting, thus we went.

Tuesday, April 16, 2013

Reaching Beyond The Realms of Symptoms to Try and Help Your Own Self with your illness...

Well, yesterday after waiting 11 days, I FINALLY get a phone call about my abnormal "myoglobin" blood work. The call at first was, this is "she" from the doctors office. The "nurse" said to call and tell you yes the test has NOT changed, it is still high and not normal. Then there was silence! I am like okay, now WHAT?
I guess all they were to do is answer my question, and leave me hanging? So, I got put on hold for at least 7 or 8 minutes, maybe more. She comes back finally with well the doctor said to "stop your muscle relaxer" (which I need), it "might" cause this, but more than likely it is your MTX and of course you cannot stop that one. So, I am like okay, well I am in horrid pain, especially in my legs, and something needs to be looked into. I want an appointment. We had been talking while I was on hold, and decided this was crap, I need to go into SEE him in PERSON! She comes back on trying to say to "redo" blood work, yet again in 3 weeks, THEN come in the following WEEK to see the doctor! I am like NO! I ALREADY have those appointments! Hell, it so happened those are regular appointments for followups from my 6 month visits! As I told her, I am IN PAIN, and I feel this needs to be dealt with SOONER than 4 weeks... she messed around finally said well he can see you on May 1st. Well, hell that is still two weeks away, but better than 4! It is like what I said below on a Facebook post, we are patients with "chronic issues of pain and illness". We tend to "KNOW" our own bodies, symptoms etc, and are somewhat able to pinpoint often times what is wrong just because we have the time to research our own stuff. Rather than as a doctor who has hundreds of different illnesses to know, we usually deal with a few, thus of course it makes sense we may have a better knowledge of what is wrong, not all the time, but often times we either already know or at least understand what they tell us. IF I, as often I do, "Google" my "symptoms", I come up with something the almost same each time. Well of course than can happen due to frequently illnesses with chronic pain, autoimmune illnesses etc have many of the same symptoms etc. But, when you "dig" deeper into all of this, and can add your tests results etc.. we tend to find a picture of what is happening. NO I am NOT a doctor! Never said I was, BUT I think for the most part, WE do understand better at times. WE have doctors that get "bent out of shape" if we give the impression we know about our illness. Of course I have to say, I also have some great doctors who truly appreciate the fact I do look things up, and I know about my own issues. It helps them to help me. Yet, I of course want to weigh in what they have to say. I might research something, and get one impression, yet that doctor has either seen something in his practice or knows something due to his schooling, that I may not could have known. Thus of course, they are more proficient, I expect them to be. I certainly would not want to see a physician that never could give me a correct diagnosis and treat me. IF I had to tell them every time what was wrong, I don't feel that would be the correct physician for me. So, we have our incredible doctors, our insane doctors (met a couple of those), the "luke warm" ones that sit on the fence with stuff, those that are test happy, those that are just quacks, and those that are exceptional in all ways. They communicate, the know their stuff, they are willing to LISTEN TO THEIR PATIENT, they do not get offended if a patient does their own research, and there are a few that should not be even in practice. When you have chronic health issues, you tend to go through all of them. I always pray that we find the best, the cream of the crop, and for the most part I have.
What I do find though, is that I may have 5 that are incredible! Then have one that is just not at all what he or she should be. That ONE that is a screw up, can give you hard feelings against the others. I find that if one of my doctors has been a jerk, then I am leery about the others when I go see them.
So, after hearing all of that over the phone yesterday, I sit here this morning, my arms, hands, feet and ankles burning like I am on fire, and I think to myself, must I put up with this another 2 weeks? Do I go back to my pain doctor, who honestly up until yesterday when I found out the blood work is STILL abnormal, I was ready to have the pain doctor do surgery and check this pump. I had resolved myself late last week to face maybe it is the pump or the catheter from it. Maybe I should let him put me to sleep, and take a good look at them. It seems so ridiculous and almost impossible to have so much "supposed pain control" methods, yet still be climbing the walls in pain! It does not make sense. What I also have come to find out, different types of pain, require different types of pain management. Some pain responds to the regular method of pain medications. Others take medications that reduce inflammation. Some, which is what I think I have developed is nerve pain (either nerve- neuropathy) or it IS MUSCLE degrading, where my muscles are inflamed and I have a "Myopathic" type of situation. Which, can be extremely painful. I just began to read on those, more extensively over the past two days. One of the FOUR NEUROLOGISTS that I saw, told me his first thoughts about the severe leg pain, the double vision, and all of the new symptoms etc, with the tests indicated a myopathy called, Myasthenia Gravis, which is an AUTOIMMUNE ILLNESS by the way. But, the symptoms "fit" several of these, thus the "hunt" for what is correct is on for me. I refuse to lie down and NOT find out what is wrong! Somehow, somewhere, myself and one of the doctors have to fix this. I refuse to allow this horrid mess of pain and illness ruin the rest of my life!


Monday, April 15, 2013

A Pleasant and Prosperous Weekend around My Home

I can say that I actually had a very good weekend, got lots done (although I wanted to accomplish more), the weather was beautiful, got some things over at Mom's also fixed for her (curtain rod brackets, etc. that needed to be replaced, smoke alarm batteries and so forth), also got my own pillows washed and dried, decided on trying to get our guy that does our stuff at the house that we can't DIY on (like finishing laying floors in the kitchen, hooking lights up in the bath etc) added up costs, materials etc.), got some of my plants cleaned up and out on the front porch, did get some work done on my 2nd book, my quilt is coming along so nicely! I have all of the "hearts" appliqued on now, and I am doing all of the fancy stitching around them! I am so proud of it. I also got some inspiration to try making some "healthier" home made pizza's that turned out terrific! We liked the one we made even better than any of the grease soaked take out or frozen ones around! IT was all fresh veggies, and chicken breast with garlic, fresh colored bell peppers, purple onion, mushrooms, & I used low fat Mozzarella blended (the Italian cheeses blended and shredded) cheese, marinara sauce, and I did use the Pillsbury roll out crust from the dairy section. I am going to make my own next time, and try doing it with wheat flour or even try something like soy, rice or another substance that is flour like, but healthier. We also put some yellow salad pepper rings on it and at the very last, had a fresh tomato we had cut up, put on for about 2 more minutes and allowed it to just warm up. It was awesome, easy, NO oil, NO added salt, we did not OVER due the cheese, and the crust was our only real (not as healthy) ingredient we used! It was easy, and fun. And talk about delicious. We had taken a chicken breast off the bone, cut it up into small pieces, put it in a non-stick skillet with a teaspoon of canola oil, and used 2 of the Mrs. Dash's. I love the "spicy" one, and she has one that is Herbs and Garlic. Then of course we must have the fresh black pepper. Then we put the mushrooms in after the chicken was done, and saute' them just a minute or two before putting them on the pizza! WE already have thought ahead for another one this week. I have lots of the fresh peppers etc left and have to get those used or they will ruin. We are going to try our hand at one that we used to get in Seattle. It has more of a "white sauce" on it than red, with the chicken and they put artichokes on theirs. Now I am not a fan of them, BUT on that pizza they were delicious. So, we are going to see if we can reproduce it. I am STILL IN horrible PAIN! I dealt with it all weekend long. So, still I did not get to do as much as I really wanted. I need my flowerbed cleaned out, and a few things in the yard done for spring, but me and the hoe just could not meet this weekend. It really hurts me that I can't work in the yard more. I LOVE yard work! But, between the sun and Lupus, and all of the painful muscles, nerves and joints, I can only do so much, and certain things. I felt like even though it was not nearly all my list had on it, at least I was able to feel like I really made some head way on things I have been wanting to do, but either have been tied up at the doctors, or tests, or just hurting TOO badly to do them. I pray the weather (even though we are expecting another one of those damned storms later this week, where the temps go from 85 degrees to 39 overnight dammit!), so that will again put my body in shock, I pray I can also find the hell out what is wrong. I did not hear back last week from my doctor on the important blood work for this abnormal Myoglobin in my blood stream! It has been well over a week since they did the test and it should have been here either Thursday or Friday last week! I am getting a bit put out with all of them. His office is really not good I think due to him not being able to keep employees! As soon as you get used to one, they are gone and someone you do not recognize is there. It really hurts the patients in many ways... and the doctors office. Anyway, I wish everyone a very good week! Take care of you and yours, Rhia

Saturday, April 13, 2013

Trying to Do So Many things that your Physical Limitations Make Impossible


I posted this below this morning on Facebook. But, I did not go into just how rotten you can feel about yourself, when you must face the fact that you are no longer able to do some things that you would love to do in your life. Chronic Pain and Illness changes everything about life. From the way you dress, look, feel, what you do, don't do, how you do it, when, why, where.... you name it, being in this kind of pain, or dealing with many illnesses, some of which are Lupus, RA, FM. CFS/ME, Osteoarthritis, MS, other autoimmune disorders, all kinds of chronic pain from DDD and DJD, of which joints and your back, just will not tolerate many things you once enjoyed. You cannot help but NOT want to think about how you are not able to do, this, that or the other. IT is a slap in the face quite frankly. Well, as I thought about all of the DIY projects I used to be able to do, and loved doing them, it brought on emotions of all kinds. Sad, Mad, Angry, Depressing, Unbelieving, fearful, and disappointed just to name a few. Thus, even though my "head" wants to think we are able to complete all of these projects around the house, my physical body knows, I am certainly not able to do many, many of those things now. It sucks. It sucks to get older, but I don't want the other for sure, not right now. So, we must get someone else to handle those things we can't do now, then enjoy and go with the flow, to love the painting and decorating we can do when the other things are finished... thus the post for right now it all about life, and trying to life it to the fullest, with illnesses and pain that think otherwise.... 


Even though I felt at first I did not get much accomplished this week, I really did. FINALLY, not having to be at a doctors office, taking some damned medical test etc... for an entire week paid off. I got to do lots of things at home that I have been wanting to work on, from more on my book, to getting quite a bit done on the new quilt top. It is really coming along well. Plus got 99 percent of my grocery shopping out of the way for the month, some things around the house done that I have not been able to, and put a list together of hopefully finishing up a few things in 4 rooms in our home. We still have some work to do in our kitchen, laundry room, bathroom, and then the music room needs paint etc. Of course it is to the point physically lots of it we are having to admit, we can no longer handle. Used to I could lay carpets, paint, put up ceiling fans and so forth. I was the DIY Queen! But, with all of the health problems, there is just lots that either I can't do at all, or things I will be able to do, will take me a lot longer, just because of limited motion, pain, and hell I am just getting old! Age has a way of reminding you, when it takes 4 days to do something that used to take a day to do! Anyway, I stood in the kitchen at 3 am yesterday morning, LOL, going over the "finishing" of those rooms. The kitchen needs a floor, along with the laundry room and bath. We desperately need new flooring in all of them. But our dreams of laying tile etc.. have been squashed, due to expense, time, and lack of being able to. Thus we are going to have a guy that is a wiz at just about everything as far as a contractor to help. We decided to go with linoleum instead. We will pick out something nice, but rather than go for the expense stuff, this will be easier for me to keep clean, and so forth. Once it is laid, that should be it for our life time. Then we need a vent-a-hood put up, and I am going to with Jim's help sand down and redo our paint on the cabinets. We did not get to really get the old paint off of them when we bought the house. We were rushing to just get moved in and they had to be painted. So, now after almost 7 years they are peeling terribly due to the old layers underneath. Then I saw a "pre-cut" cabinet top that just fits right in after taking off the old one. They have some nice ones that are reasonable, and mine is UGLY AND OLD! So, we will get our friend to install that. The bathroom, which was our hugest "pet project", we did a great deal of the work on. We literally knocked out a wall, moved the toliet and sink, made enough room for my "big honkin shower/tub/sauna" that I love but is a pain in the butt to clean. Jim got most of the texturing done, we have all of the rest of the lights, mirror, most lights and the bath fan are up, they just need to be fastened in completely and wired. Then of course also flooring. So, again, we had some other expectations we wanted to do, especially wanted to do something looking like marble on the flooring, but alas, it will have to be "marble look linoleum". We just can't afford the expense of the supplies or labor, plus with that tub as it is, it would be a nightmare to even do. So, we could do the finish painting etc, but the rest of it, we also would have to have the guy do. Then we need flooring in the laundry room. Other than that, it is mainly done. I want a storm door back there also. Then our music room has also been one of our future "pet" projects. It is a 2nd bedroom, but of course we so rarely have any guests, plus the house is so tiny, we have to use it for other things, thus it is kind of a music/hobby and if need be guest room. We have really not done much to it. We have the carpet already, and we have lots of ideas on how to decorate it. We have thought of everything from making it look like an old fashioned soda fountain shop look, with pink and black walls etc... to fixing it with collections of things like glass ware, bumper stickers, post cards, and even thought about making the wall behind the drums appear as if it had the "acoustics" type of wall behind them. Also, we intend on putting a little bit of a platform in that corner to put the drums on. So, that room is really more of a matter of paint, and have that carpet put down, and how we want to decorate it. So, sounds like a lot and partially is. The floors of course being put down are our biggest item. Then finishing up that bathroom, and hanging the vent-a-hood (it will have to be one of the "professional" looking ones that just hang right out of the ceiling. We have no cabinets over the stove, thus it needs to be that kind. Of course those are more expensive, but it was one of the things I really did want in the house when we first bought it. We just put it off and done so much of the other things first, and most of this is just "finishing" up stuff we are not just able to do, or have not had the time, or better yet, usually the money. Anyway, that was my entire hour "thought" process on Friday am! But, thinking about getting those things finished up, with a little touch up painting on our baseboards etc around the house, and finishing up the out side painting.. would mean almost a new looking home again! Okay, enough... already... I wish all of you a good weekend... I have lots more to do, but after all I did this week.. I maybe resting part of it. There is always tomorrow... or I hope there will be many of them in my future.