One Baby Step At A Time "Life's Surprises"

Over the past several months, it seems each day I find there is something new in my life. Yet, those new things are often "not good things". New symptoms of illness have plagued me now since early January, and even though I have been to numerous physicians, through many tests, and it seems I either have no relief, no answers or develop another new almost unbearable symptom. I have tried to piece the puzzle of this mysterious illness together, trying to gather information from my own searching on line, to trying to put what tests have been done in order that they make sense, and I have honestly has more "luck" than the doctors have had. I have figured that even though the double vision began several months back, long before the severe leg pain, fatigue, abnormal blood "myoglobin", & all of the what seems like new side effects that have just suddenly hit over the past few months. OF course they could be related to anything. They also could be related to one another, even though they came on at different times. I finally got one issue straightened out yesterday with my pain specialist. After several phone calls that were getting me no where fast, I just made an appointment to go up and see him. Once we could get on the same page face to face (which I find now is almost impossible when leaving messages with nurses) he was in agreement, that at this moment the pump does NOT look responsible for the issues, and it seems to be either muscle and/or nerve in nature. Thus if it is a type of neuropathy and/or myositis, or muscle issue, then doing any kind of surgery on my body ti check the pump is a total waste of my time, his time, and a waste of putting me under anesthesia for no very good reason.
We still honestly do not have an answer. I could be looking at a viral thing that did start first (the double vision was the very first about 9 months ago), but it seemed like a flu bug. During that time as I have explained more than once I developed severe muscle pains, mostly in my legs, down the back and front, but in my feet, ankles, toes and even the bottoms of my feet. At the time I thought it was from the flu. All of us that have ever dealt with a case of flu knows you have horribly painful muscle aches for days, sometimes for a week or more. But, rather than begin to get better once some of the other symptoms got better, the pain in my legs, from my lower back and sides, down to the bottoms of my feet got worse. That was about 4 to 6 weeks before I finally went to my doctor, and finally called and talked with my pain specialist. It also happened that he had refilled my pain pump during this time. Thus we felt it could have something to do with the pump at the time. (I still wonder if some if it does not.  About 5 days after he emptied it completely and refilled it, suddenly the pain did improve), so I wonder if there was something somewhat wrong with the medication, but it took longer to get a grip on the pain since I was in such horrible shape, plus I was also on oral pain meds, which helped to change the pain enough to make it noticeability different. Either way something began to change. The pain was not all over my body as it had been, my legs still hurt badly, but not as badly as they had a week before that. All the while each and every type of specialist known to man was running their own tests on me, and not sharing the information with my other doctors, thus not one soul, with the exception of myself, was able to put two plus two together and get the correct answer... 4! I began to look at the test results, do enough "Googling" and see that in many ways all of the symptoms, all of the test results do interrelate to themselves in one way or the other. I for the life of my cannot fathom why doctors will run a million tests, never look at them, or share them with all of the others involved, at least the PCP! So, not one soul knows the entire story, especially those that half-assed listen to me, and none of them can possibly "guess" if they do not have all of the things in front of them. Hell, even the tests that get ran are half the time not looked at by the very physician that asks for them. A great example was yesterday. I knew what my EMG said. But, even though my doctor who is a great pain specialist, missed the entire boat, because he had never really looked at the very test results he asked for. So, I was told several times, he HAD looked at them, and nothing showed, thus it was not the issue. Yet, yesterday, when he LOOKED AT THEM while I was sitting there. I feel that is really the first time he saw any of what showed on the EMG and NCS. So, no wonder he was still telling the nurses to schedule a surgery! What if I had not been so astute? I would have already had surgery, and for what? Not for what needs to be done as far as it looks now. I have to wonder how many patients just take the "nurses" for their word, thinking they must be right, and have a surgery that is not necessary? I will bet there are many. They have insisted on me, for the 4th time in that many weeks to do surgery as "per my doctors orders" and were very insistent that it be done! Luckily, I DO understand, thus I kept NOT having the surgery, putting it off until we had all of the tests back, and then I did GO UP THERE to talk to my doctor himself! IT is true insanity. You cannot trust any of the nurses, I have found out lately, half the time they do NOT take messages correctly, or tell the doctors exactly what you said. They do NOT get information correctly from the doctors to tell patients, but I think they just make something up about half the time, because they are either incompetent or just don't care anymore. They do a piss pour job, get paid, and go home. NO longer it is on their shoulders to make sure patients are done right. I realize not ALL of the nurses are that way, and we have many awesome ones that deserve lots of praise, but they are getting less and less. More and more we are seeing the others, like yesterday. I called (I am NOT exagerativing 4 times) on one of my meds. I got the run a round from both ends, the doctors office and the pharmacy. On the 4th TIME when I called the doctors office, I TOLD THE NURSE to MAKE SURE the prescription was being sent to the CORRECT PHARMACY! They kept saying they were not getting it! FINALLY, after nothing again, I CALL THE WRONG PHARMACY! and where it is sitting??? At the very pharmacy I told the NURSE NOT TO SEND IT TO!!!! How many times I said that through 5 conversations I don't know but they had also gotten the original request for a refill from the correct pharmacy1 Yet they still could NOT GET IT RIGHT! I gave up, told the other pharmacy to fill it please and I would pick it up today. I had already had well more than enough of the back and forth game, and not one person was doing what they should. I was wasting my energy, my time, and getting more upset by the moment. It was not even worth it, but my doctor will get an ear full when I see him again.

From here I plan to finish my 2nd book and get it published hopefully by the end of May, or the first part of June. I pray my body will allow me to work on it. I am about half way or more through, but I have lots of the prose to go through. Those are what take the time to make sure they are correct, in grammar and spelling. So, I will be trying to get those in their, and decide what way I want them organized. The name of the book is "Time Tattered Musings"- Reflections Through The Looking Glass of Wisdom. I hope to "meet" my own personal deadline which is to be by the end of May. I hope to have it completed and ready to publish by the first week in June, if life permits.

Wish me luck, and I shall continue to keep you informed, and will blog here also. Their will always be something going on that I need to talk about in my entangled web of what I like to call "Life".... Hugs, Rhia

Lost My Reasons For What I love To do...

Morning All. Just a few days ago, I was "Up" I thought about my 2nd book to be published coming along. It has been slower than what I thought, just due to my own unexpected illness issues, and things with my Mom we did not expect either. Of course that is life. Things go on when you least expect them to, and especially when you have other roads to follow, it seems you find you are on a completely different path all together. From pavement, that seems smooth, all of a sudden to a dirt filled, rocky, full of ruts road that is taking you to a place you had no idea you would even be going. Ah, 'tis "Murphy's Law"... or may I paraphrase that now to say "Rhia's Law". IF it is going to happen, it shall happen to me, and usually not in a good way. No different is like yesterday. I felt like a train had ran over me, then backed over me, and ran over me again. Even though we had a wonderful time on Sunday for our day trip to the Casino, I always pay for it the next day with aches and pain, and being tired. Thus, even though I was worn out, I thought I would get something done around the house. So, I wanted to change the way the ceiling fans are to move, back to the correct way for Summer. Well, as soon as I got up close enough to move the button,  I saw just how dusty they were. So, of course I am not going to leave them that way. I get my dusting items, dusted them off, and when I completed cleaning the one in our living room, I turned it on. All seemed fine, so I went to the one of the office. Well, it is new or fairly new. We had to replace one I believe last Summer. In the process, we had a blade that has a bad thread where you put a screw in. Thus after the entire fan was completely up (again Murphy's Law) the very last blade was the one we discovered with the spot in the threads and we broke off the screw into the hole. So, that left only one screw in that blade, and of course how are you going to hold that on? Well, you can drill it out, but then you still have the question of how to get something in there to hold that blade on correctly? Anyway, we had ran it with one screw, but just on low for the Winter. Due to the direction the blades for for the Winter, as long as we kept it on low it did fine. But, after I cleaned it, I happened to have knocked that blade out of position, and of course it went nuts when I tried to turn it on. So, I quickly turned it off, and decided to let Jim tighten the other screw in that blade, and he had an idea of epoxying the other side on to hold. In the meantime, I glance over to our living room, and suddenly that fan just stops! I was like "what the hell"??? I thought possibly one of our breakers tripped or I did something while cleaning it. Well, I also turned that one off. I tried several times, and it seems like the motor is probably shot in it. When Jim got home, we both agreed the motor is probably going out, but if you turn it on, and help the blades go at first it will run for now. So, we can do that for the next few days until we get a fan and can put it up. Of course this week is already sort of booked with several things to do, thus time is never on our side when it comes to projects at the house. So the whole story I tell to show that here I am cleaning even though I am feeling lousy, and wouldn't you know I clean the fan and the damned thing goes out. I guess I would have been better to just leave the stupid thing dusty! So many times in my life, just when I feel I am doing something that is "good", I find I should have just "left it dusty" after all.
thus, it is that way about my writing and my book being published. I was so elated to get my 1st book published. I never in my life dreamed that wish would become a reality in my life, yet it did. So, at first thinking about a 2nd, and then a 3rd one was really something that seemed to keep me feeling like I was on the right road of life. Yet, every stone in the world has been thrown at me to knock my "horse" and it's rider (myself) into the dirt. Chronic Illness on TOP of LIFE is just not pleasant at all. Life is already difficult enough, and can at times be more complicated than we care for it to be. Then you add a condition, or conditions that are a daily part of your life, such as Lupus, MS, RA, FM. CFS, Diabetes and the number of other chronic conditions that are always either on the fore front or the back burner of your life, and your pot tends to boil and run over more than you care for it to. Plus, that boiling point tends to be at a lesser "degree" than if you did not have the chronic issues to deal with frequently. I thought about this Saturday afternoon and early Sunday morning as I readied myself for a day away at the Casino. When you have a type of illness that tends to "rule" your life, such as Lupus or RA, or many more, all of the things involved with that illness have to be taken into consideration even on a trip for the day! Medications have to be either taken with you, or watched when you take them. What you wear, especially shoes due to all of the walking can effect you, thus you may not be able to wear a certain outfit or shoes. Or you do wear them, and just suffer through the day. Then you may have a special diet you have to stick to, pain that shall pop up if you have chronic pain issues. You must be sure you have your health information on you, especially your medications, and if you have something that needs special care, such as I do, with my pain pump(I cannot have a MRI), you must have that all written down in your wallet or purse where it can be located for site. Other items would be insulin if you are diabetic, and/or sugar pills, candy etc. Maybe you have a walker, cane, or other item that helps you walk. Also, for some it may be you are not able to ride for but a small period of time, then you must get out and stretch your legs. Even though our trip is not that far away, and the ride is not all that long, stopping for breakfast about 30 miles before the Casino is a nice break out of the car for a little bit. Riding for any length of time with joint issues, back issues, and so forth will put you in a strain, and make you sore. So, even a quick few minutes out of the car to stretch helps if it is possible and needed. Then of course if you have any other considerations like animals at home, any thing that can be effected by being gone for the day, all of those things must be addressed before you leave. Hell, even just going for the day somewhere can wear you out just getting ready to go, much less the trip and getting there.
When it seems you begin to be much slower at things, whether it is getting dressed, cleaning the house, going to the market, or whatever it may be, you being to get frustrated with life in general. That includes even a trip you look forward to. It used to take me an hour to get ready, now it takes three! That does not include the day before I spend trying to decide what to wear and so forth. With Lupus and/or many of these other chronic illnesses you begin to be slower at many things. Like I said, rather than an hour to get ready, as it was just a few years ago, it takes three or more. Age already does that to you. The older we get for the most of us, the slower we are at certain things. Your balance is not as good. Your thought process is not as good. You tend to forget certain things, or must double check yourself to make sure you have what you need, and have done what you need to do before you leave the house. I also get much more frustrated now when anything happens to "change the plans". Whether it is a good change or just a delay of some kind, once I have "planned" things out a certain way, that is what is in my mind. So, if a sudden last minute something interferes with the plans, then I am just out of sorts for the next few minutes. It happened yesterday in fact. Mom and I were supposed to be going alone yesterday. We had asked my hubby to go several times, but he had said "No", he wanted to stay home this time and work on the new web site. I had even asked him late Saturday afternoon, and he said no he was staying home. So, in my head, I had it planned out when to leave, when to have Mom drive over here so Jim did not have to get out to take me to her house, etc. Plus there was NOT any bad weather in the forecast for the entire week and weekend. All week long I had watched the weather here and in OK carefully to see there were no changes of rain or thunderstorms here or in there area. Thus, my plans were for Mom to be here around 7:15 am. She could see to drive by then, and did not have to be concerned about driving in the dark. She does not do well driving when it is dark. So, I knew it would be light enough for her to make it here. Well, I got everything ready, showered, dried my hair, and went to put on makeup, and Jim mentioned getting in the shower. Well, this was about 5:30 am! I was like, what the heck is he showering so early for, when he has the entire day to take one or whatever. Then he comes out of the shower dressed like he is going somewhere. I stepped out on the front porch, and i was shocked. I proceeded to ask him what his plans were since he had planned to stay home, yet at 5:50 in the morning he was dressed up and ready to go! Well, he comes out with "if you don't mind, I thought I would go with you two after all today". Well, I know I had an odd look on my face, not meaning to say no at all, But, I was just bowled over that he so suddenly changed his mind and decided to go. That was a change in plans I did not expect. So, that meant having to change things around. We had to fix up some place for the dog for the day. So, we turned the kitchen into a play room for them, but that took putting extra food out, water, their blankets, and so on so they would be okay until we got home late that night. Then we had to get hold of Mom, tell her NOT to come over her, and that we would just come over to her house instead and leave from her home. I had to turn the phone over to ring the cell phone. We had to leave some lights on, lock everything up, make sure everything was turned off, and so forth. I know it does not seem like a lot, but it does add up to more time and trouble since we were both going to be away for the day. It is funny that way, that not many years ago, I was puzzled by my own parents being set in their ways so much. I am not that much older now, but between aging a few years, and then the matter of having chronic illness to deal with, every little thing that does something to put you "off schedule" or disrupt what you thought was going to be one way, seems to just upset your entire world. Once plans have been made, I guess I am so set in my ways in essence, that it throws everything out of sorts for me. I always hated being late, and now it seems I am late no matter how early I start to be ready. Whether it is cooking, cleaning, going somewhere, I always start earlier, yet it seems I still tend to run late. My Dad was such a stickler for being ON TIME! He was EARLY everywhere he went and everything he done. So, if you were one minute late he would be just totally tore up. I am sure that is where I got the thing about being "not tardy". He was that way until the day he passed away, he believed people did not have many excuses about being late. He understood emergencies, but just being "lazy" and not being on time was a huge "No-No' to him. It used to drive him nuts because my half brother was NEVER ON TIME for anything. IF he said he would be there at 4, look for them around 6. Plus do not expect a phone call telling you they are running late. They would just be there when they got there. Not Dad, if I was cooking Christmas dinner for all of us, I made sure if I told him to be there around noon, I was dressed by 11. He was going to be at least a half hour early or more. So, I can blame my times of duress on those things that suddenly change without notice on age and illness. Right now I am just in a place that I am not sure who I am, where I am, what I want to or don't want to do. I am very "scattered" to the four winds about life, about being ill, about all of the annoying chapters of life, that seem to rain down on me, just when I think things are looking better. I honestly feel quite useless. I even got out my things in my sewing machine cabinet and measured out pieces to make a quilt. I am so entirely disgusted with feeling like crap, feeling like I write nothing but crap, feeling like everything I do turns to crap, and I am just at the bottom of the mote of what living is all about, that I do not care anymore about what used to seem important. Even what I am "blogging" about at this moment, seems more like I am blathering on, rather than actually saying a damned word anyone cares to hear..... (so I think it is just time for me to stop right here and call it day on the blog) and bid you a much better day than mine seems to be.

A Very Good Article that Explains so much about CFS/ME & many other often "unknown chronic illnesses"

A friend of mine has this posted on her group this morning in FB. It so relates to what is going on even in the realms of Lupus and other autoimmune patients. I also wrote this just before I read the article, and it explains why I feel we have such a "downgraded" medical situation here in our nation. There are lots of things "broken" here, and the way patients in the realms of chronic illness is one that is definitely busted for sure. All too often when we "enter" the medical realms with a chronic and sometimes rare set of bizarre symptoms, it takes often YEARS to get a proper diagnosis. We can say that is for many reasons, from the screwed up way medical personnel are educated, from way too many doctors, too highly specialized, yet do NOT communicate with other doctors or their patients, so we get left in the middle. Then it is like "pulling teeth" to find out what the hell is wrong with you. I have also been given a different diagnosis, by several different doctors. One doctor sends me to another, and that doctor does his own set of tests, tells me something entirely different, then send that over to the first doctor, who then send me office to yet another specialist who reruns the SAME TESTS!, and gives me some other diagnosis. Well on the merry-go-round you are on then. You are sent from one doctor to another, none of which have the others information, thus everyone has their own opinion. How can a patient really BELIEVE what the hell they are told, when you are told so many different things Honestly my latest diagnosis for the double vision, the high abnormal myoglobin, the severe pain in my legs and back, has been diagnosed by the latest neurologist of suspected myasthenia gravis! Well talk about scary! Then I know the myoglobin situation could lead to acute kidney failure if it is there long enough, etc. But my doctor that told me that one is out of town for the week. I really need to talk to him because he left a message and told me to STOP a medication that I AM NOT ON! So, they call to set up another blood test in three weeks, yet it will not help to do that, if he thinks this other medication is causing the issue, yet I am NOT taking it. As I said, it is literally a night terror if you sit down and listen to what I have been through. I know people probably do NOT believe what all has happened and not happened with my illnesses. It is nuts, insanity, and the sad thing is rather than getting better, it is just getting worse! Here is the URL to the article, and a copy of my post from FB this am:
http://phoenixrising.me/archives/16291

(I had been answering a post from a dear friend who lives in Malta when I wrote this)

You know Suzi(by the way it is good to see you) I trust MY OWN diagnosis almost better than I trust the doctors at times. It may be greatly different in Malta. Here our doctors are too filled up, too busy, have way too many "irons in the fire" so to speak with paperwork due to the government telling them what they MUST do because of Medicare, they have a shortage of GOOD nurses, our hospitals staff are not well educated at times, and the things WRONG here go on... thus our doctors DO NOT have the time (say like I do_ to sit down and really PUT all of the pieces of a patients medical facts down, study them all together, and then be able to know what is going on to make a correct diagnosis. Another problem is we have TOO many specialists now. Every little thing has some kind of "specialist" now, and every one of them wants to do their own testing and run bills up higher and higher with us and the insurance companies. BUT, then rather than SHARE INFORMATION so all of your doctors know everything going on, THEY WON'T! I have spent hours and hours, on the phone, paid money for, went and picked up all kinds of medical tests and the results so I can take them, copy them, and be sure all of my doctors have them. Then you know what, most of them never look at them. Other than my family practitioner, and possibly my Rheumatologist, the rest of them could not tell you anything about my medical issues, other than something they "worked" on, did surgery on etc. Right now, I know for a fact my pain doctor has had my EMG/NERVE conduction study records for a week. In fact they called me on Monday and told me they are ON HIS DESK! I have YET to hear from him. Now I cannot MAKE HIM look at them. I did everything I could to get them there to him. I checked on them, had them re-faxed, called to make sure his office got the fax... and now I know they are on his desk. Does that mean maybe he is out of the office or something? Well not one soul had told me that. So, yes I trust him as my pain specialist but I feel somewhere in his office is a huge break down of communication. IF things were right, with him, staff etc.. he would have already seen those tests and called me. Now here it is Friday, and I need to call for a refill of the medication he had given me for this nerve pain, yet he has not even seen the tests results, plus he does surgery and is only in the office half a day on Fridays. There are lots of issues with our nation now from the entire Medicare thing that hurts doctors, hospitals, patients and the nation, along with a lack of GOOD doctors (doctors used to be doctors because they wanted to help people), now there are those out there that just are in it for the money (as per the neuro-opthamologist I saw, that just is an ass), and as I said I feel this business about them not often times sharing information, thus us, as patients must try and get the paperwork to them, THEN get them to see it!, plus we lack medical STAFF THAT CARE! I have seen more NOT trained staff, or they do not CARE, or something is wrong, from the hospitals to especially the doctors offices. They do not care about doing their job correctly, OR they just do not care at all. Maybe because they do not get paid enough, lack the proper training, or something, but even my primary care doctor cannot keep staff! Every time you go in, just about the time someone their gets to know you as a patient, they are suddenly gone! I bet he has been through 50 different staff people in a year. I am not sure if that is because of his huge patient load, long hours, pay amount, maybe someone in the office is impossible to work with(they have an office manager that is just a jerk), but something is wrong when a busy office, that has plenty of work to do, cannot keep good staff there. So, we have all kinds of issues, that also relate to reasons WHY we as PATIENTS get left out, overlooked, mistreated, misinformed, and then that can lead to misdiagnosed. You are right you must BELIEVE in your physicians and trust them that they are diagnosing you correctly or you can never trust that you have been treated for what you need to be treated for correctly.

What Is Truly Normal? & How Do I Cope When It All Seems To Much?

Two stupendous subjects as I said at the end of my last post. I face these "dilemma's" frequently. When I say frequently, I mean daily for the most part. We, as being victims of chronic illnesses and/or chronic pain (which by the way usually run hand in hand) always question each day as being normal or not? We tend to think about our lives "before" this mysterious "blackness" washed over us, and up until then, we always thought of our lives as normal. We went to work, we had our family, we cooked, cleaned, went out to parties, dancing, dinners, school functions, and did all of the things that most "normal" people do. Back then I never questioned if things were "hard" to deal with. I just accepted that my life was pretty good, and I guess or may I say "I KNOW" I took those years for granted. We tend to assume nothing will ever change the normality of our lives. Other than kids growing up, going to college, and us growing older, we rarely sit around trying to decipher what might "normal" be if we were chronically ill? Not a question the majority of the population asks itself; UNTIL you are CHRONICALLY ILL. Then that seems to be just one piece of the "new normal" of the rest of your days ahead. Acute illnesses, such as the flu, a broken leg, having a surgery, and so forth, come and go. We may be very ill at that moment, and it might even last several weeks, let's say if you are recovering from a major surgery. But, you know that you WILL FEEL BETTER! It is temporary. Better is coming up.
BUT, when you have a chronic illness, such as an autoimmune disease, things such as Lupus, RA, MS, Diabetes 1 and 2, FM, CFS (it seems we have come to "letter" now for all of our diseases), you know you will NEVER HAVE A NORMAL DAY AGAIN! No matter how "normal" you want it to be, and you do have days that have a tinge of the "normality" in them you once had, but your entire life is turned right side out and upside down, with no way of ever truly finding what is "true North" again. You KNOW you life forevermore has changed. You are either going to battle with some particular illness that has many symptoms, or take lots of medications that can cause lots of issues, or pain that on some days can be relentless. No matter how you try and slice the pie on a chronic illness, that thought of it being "temporary" flies out the door, and you realize that forever more your normal no longer exists. I have attempted to try and create a new kind of normal day. Yet, there is nothing normal about my days for the most part. If I am not fatigued horribly, where I must push myself to do my errands, do things around the house and exercise it is unusual. Don't get me wrong, not every day of my life is dreadful. When I am out of a flare, which sometimes goes for even months, the fatigue and tiredness, the headaches, the joint pain, and the rest of my symptoms are "minor" compared to a flare. I can get myself going fairly easily, but now it takes me much longer to get ready than it used to. Just a few years back, I could be up, showered, dressed, makeup and hair done, no more time than an hour if I was going somewhere special, less if I was just going to town shopping. Now that has turned into more like 2 hours. Plus that does not often include putting on makeup, or really dressing up somewhere to go to like the Casino. That takes at least three hours, if not more. I usually have everything laid out, jewelry and all for the next morning, if we are going very early like usual. I have learned to get as much ready the night before. Even then it takes me at least 2 1/2 hours to get everything on and fixed! I have slowed to a snail's pace when it comes to all kind of things. Buying a large bill of groceries takes me twice as long as it used to. Of course now I coupon a great deal more then back then, but still an hour or less trip now once again is more like 2 to 3 hours. Whatever it was from cooking, to shopping, to cleaning the house, it takes me twice as long. I used to believe it was because I was lazy, or had gotten incompetent, but no, it is just that I do not get around as quickly. My body and my brain work more slowly than they used to. It takes me much longer and it is much more difficult to make decisions. I used to be able to not give something much thought, and I just did it. I did not have to contemplate over some minor ordeal, but just do whatever it was or was not and go about my way. But, even what to eat for dinner, or what to watch at night on television turns into a major item to decide upon. Chronic Illness for me is like the song "Running On Empty"... you feel you are always running on empty and also running behind. Every day of my life feels as if I am playing "catch-up" with myself or whatever I am supposed to be doing. I feel like I have had 5 years of my life on hold, and now I am trying to get back to where I was, before I fell so far behind my own life. There are days my mind may be running a million miles an hour, enough to make more people dizzy, yet it is like riding a stationary bike, or running in place, all of that brain moving gets me no where. I have just about learned, or more like found it easier to just say "I don't care", what I eat, what I watch, where we go, or when we do... just whatever suits the other person... and so forth. It is much too taxing on my body and mind to make so many decisions, thus it is much easier to let someone else lead and I follow. Yet, that gets frustrating because I find that I really DID want to choose at times, thus I am upset with myself that I did not make the effort to do so. So, normality is just not there. Not if you are thinking about your life before chronic illness. It will NEVER be back to that normal. That is sometimes very difficult to deal with and accept. Honestly, for many of us, I think we never truly accept that our forms of normal days and normal lives have past us by. We had a short ride on that carousel, the fall led us down the hill, that landslide we were not expecting, and now we have had to climb back up that steep hill, with the rocks and gravel stinging into our knees as we make our way back up, sliding back a few inches and then making a few inches further up that steep and lengthy mountain. Coping, handling, mentally trying to not give up is yet another issue we deal with frequently.
I go through days, weeks, even possibly months, that I "deal" with the illnesses. I cope with all of the medications, I do not get all that stressed over pain, and in a general context, I seem very able to cope mentally with the issues that lie in front of me. Yet, deep within our souls, all too often, we feel as if we cannot take another day of illness, pain, medications, of not feeling like ourselves. We put on a good show. Sometimes in that 4th act, scene 10 though, we are breaking down, within and then without. I find myself crying in my car, and wondering why. I find myself beating the steer wheel, parked at Wal-greens wondering why I do this anymore. We look for the "good" reasons we "stay" here, rather than drive right out to our nearest bridge and jump off. At times that feels like a much better plan, than closing our eyes, and having to open them the next morning. When you know it will just be more of the same, or what is worse, is that it could be much worse, and not the same, so you have to within find some kind of synergy and opt for taking the high road rather than succumbing to the low road, which would be that selfish way out. Yet, we feel that getting out of this life, would make it easier on our friends and family. The "burden" we give them would be lifted. I often want to play the blame game, and I do it well. I think back to my late 20's and early 30's. I think back t some of the things I did back then, like getting my first tattoo, or going out to the bars with my friends, even single. I want to think maybe there was something I did back in those years that I am being punished for. Did I not take good enough care of my kids, family, home, job? Did I not do "something" right, thus here I am at 50 being "mutilated" in physical and mental ways due to some horrid thing I did back then? Often you hear people say that we shall pay for our mistakes later in life. So, when something like these illnesses, extremely chronic and more often than not incurable, we tend to feel we have been wrong or wronged someone else in our past, thus now the "judgement" is upon us for all of ways we were foolish back then. When I look in the mirror, and I do not see the person I was just a few years ago. I see the way the illnesses have pulled me down, to be a slower, older, and it seems weaker version of whom I used to be, how can I not feel as if something I did, or did NOT do has caused this horrible scene in my life. One that is not something to turn away from. You cannot run from Lupus, you can only run "for" it. You cannot "cure" RA at this time, but you can hopefully "put it into remission" with the right medications, or slow down its progression of damage.Yet, trying to convince your inner self to think you in some way are not totally responsible for this horrendous grief of pain, fatigue, never ending changes in medications, in your own body, your mind, hell... your spirit. It effects every single thing in your life, whether it is relationships, with yourself or someone else, or simply the way you leave the house now. Used to I would get take a shower, get dressed, do my hair. and hit the door. Now days, depending how long I will be out, I have to make sure I have my "PTM" which is the device for my pain pump with me, medications, for my stomach, for pain, sun screen, or may I say sun block, even in the CAR! The sun will blister my cheeks now just coming through the windshield. I have to make sure I have worn the "right" shoes depending on how long I may have to walk. My "emergency" bracelet so people would know about my health issues if something were to happen to me. I also have to carry cards in my bill fold that tell about my pain pump and my metal knees and right shoulder. All of the above keep me from having an MRI of any kind. The list seems to never stop. Then, if I am going away overnight, Lord forbid. Then it is another realm of "stuff" that must go with me. Mainly all of my medications, but there are other things I carry now, that I may not have carried if I were not chronically ill. In fact, to date, since I was diagnosed with Lupus, RA, and so forth, other than overnight, I have not been gone from the house on any type of vacation. We go for the day or for one night to the Casino in OK, and we have not even done that lately due to my own battle with illness and then my Mom's also having some issues. Weather held us up at Christmas. Then New Years was not much better. By the time my birthday rolled around in mid-February, I will ill with the "flu" like stuff that has brought on an entirely new set of doctors and tests. Honestly, I think my PCP maybe onto what is going on with the fatigue, the pain, etc. than the rest that have ran endless tests. He did a special blood test that found something that happens with my muscles which can deteriorate them. As that happens it creates a substance in the blood that cannot pass through the kidneys correctly. It kinds of "clogs" them up, which can cause acute kidney failure if not handled correctly. He, of all doctors, LISTENS, to me, he knows my case very well, and he knows exactly what to look for. Some of my doctors are fairly well educated about all of my complicated things, but he tends to be able to "look" for what is out of the normal when it comes to me, and what maybe wrong with me. Usually, he is right. So, each and every thing in your life seems totally different. We are all used to change. "Change" per se' is not necessarily a bad thing. But, when you talking about the kind of change as in an illness, especially something "chronic" that you know shall be with you the rest of your life, it is not an easy thing to accept, nor deal with even as the years pass by. It is almost as if you are always in the process of grieving. You grieve your lost life. You grieve for the lost person that you no longer see in the mirror. You are in a constant state of guilt, anger, sadness, resentment, jealousy, sometimes almost rage, & sometimes you find acceptance. But, it seems that portion, the acceptance, comes in tiny pieces that come and go more often than you care to talk about. Oh, I can put on a good show for those around me. I can act as if things are okay. I can put on a smile, half way, act like things are not that bad, and play the part when I need to. Yet, anyone that knows me very well, can see through that mask of the challenge of trying to "look" well, and act as if I am not ill. There is nothing easy about this crap, not one thing. I could make it "easier". I could admit and give in to the illness. I could throw up my minds, decide to allow the pain, the fatigue, the brain fog, the slowness, all of the daily symptoms that plague me to take over. I could lie on the sofa more. I could go out less, keep house less, cook even less (since it seems Jim certainly cooks more than I do), and the list goes on. I could do just the very bare minimum to keep the house straight, and he would certainly help to do the rest, even more than he does now, but, there is no way I could do him that way. Plus, I cannot do my own self that way. I can say the on occasion, not all the time, but there are times, when I am just having a really bad few days with this mess, that my Mom's stuff seems to almost be too much. Not very often at all, but if I am already having my own health issues, and let's say we have several issues at home I am having to deal with, then I have to also deal with all of her things at once, I can sometimes feel I am totally on overload and I am overloaded. I hate to even admit that because a huge portion of why I am even back in TX is to help her. But, before making the decision to come back, I was not dealing with all of these health issues. I had a few, but they were not as it is now at all. Thus, when we made the decision to move back and help her, little did I know I at times would barely be able to take care of myself, much less deal with the rest of the drama that has unfolded as I have lived here now for 7 or over years.
Thus all of the above, that you must deal with daily, yet you truly never know what that "daily" might be like when you open your eyes, on some days makes you wish you could step off the planet, and float off to wherever the place of no pain, no sorrow, no illness, no drama is. Now that does not mean I am totally suicidal, or thinking about harming myself. Yet, you do want to at times, leave all of this crap behind. We tend to dwell in that place of knowing the someday all of this WILL be over, and more than likely though it will NOT be here by any medication or physician. There is no magical cures here. Someday, I pray they will figure these autoimmune illnesses, along with many others out. When they do the will be able to "fix" those genetic issues, or cell issues, well before a symptom arises. Or for those with these illnesses, the medications will cure it all, or they will be able to "immunize" you to keep you from having these illnesses.
I don't see it happening in my life. or not even in my kids lives, possibly my great grandchildren may have a grasp of those things. For now, I just pray that my kids, and their kids remain without signs or symptoms of any of this mess.
So, yes we are never "Normal".... an Yes, I Cope, but it is not an easy thing, and there are days that coping is just not there, thus you give into it. Those are they days I am on the sofa with my two puppies, watching Lifetime Movies all day, and praying that this will go the hell away....

The Bad Days and The Good Ones...

Ah, even though this blog is dedicated to the realms pain, fatigue, illness, and the long road of getting through the maze of medications, doctors, test, and just "living" one day at a time with Lupus, and the entire gamut of all of my chronic issues with health, I find myself having a difficult time talking about the "bad" days. I want to encourage others that they CAN have a somewhat normal life. I want to tell you that you can overcome some of the pain, with your own mind, and with much help from doctors and medications, all of that combined with exercise, taking care of yourself, trying to stay as much out of stress as possible, and having the support of family and friends, life can feel normal on many days. But, there are days, (like yesterday) for me, that I just cannot make myself get up and go. I am too fatigued to move, I am in too much pain to try to clean, do laundry, to even think about writing a grocer list, or the idea of even getting dressed is way off the beaten path. Little things, when I am so exhausted, seem like monumental tasks to me.
I have myself somewhat on a "daily schedule". I have a certain time I get up for the most part, certain things I do at certain times of the morning, from taking my medications to exercising, I try and keep on a schedule. That keeps me moving forward, rather than stepping backward and wanting to wallow around in the "pain" and suffering of it all. I hate to think I gripe too much about all of it. Lately though, I have just felt the need to really let out all of the anger and frustrations that follow you like a shadow constantly when you are plagued with a chronic illness. things other people do, and take for granted as being a part of their day, could be something for one of us, that is a task way to huge to even think about on a particular day. That is part of the reason why the deadline of my 2nd book is looming, and I fear may not make it. It is not just about my own health issues, but now I face things with my Mother, that we are not sure about. IF some of these tests come back not so great, that may mean months and months of totally tending to her. IF she has to go through a major surgery, she will be very weak and not able to do lots of things for months. So, I also have to take that into consideration. I am also facing my own dilemma, with the double vision crap. I now have seen three doctors, and am set up to see a 4th one in early April. Yet even being specialists, not one has really been able to point their finger to what might be causing me all of this new grief. The symptoms are many yet vague. When a patient comes in complaining of "severe" leg pain, down the flanks, and down the thighs, yet it is also down the backs of the legs, to the point the bottoms of her feet hurt, that in itself could be several issues. It could mean kidney stones, sciatica, my RA acting up, issues with my spine, etc. But, the key issue is that I have a pain pump. These NEW symptoms are breaking through the pain medication that keeps me out of pain, thus it is severely acute pain, as if I do not even have a pain pump, or pain medication. So, that puts the entire situation in a new light. It could be pump problems, medication issues, catheter issues, all kinds of other added problems to complicate the entire gamut. I had already been to my PCP about it, in fact twice. I had a kidney infection, that they treated me for, thus I figured there was a good chance I had stones. But, rather than go through an expensive scan, which would not do a thing but tell us if it was stones, I took the antibiotics, drank my cranberry juice, and hoped that it would clear up. Yet, the pain kept on. I chalked it up to the "flu-like" problems I had for days and days before. I felt all kinds of the typical flu symptoms, achy joints, back, tired, fatigued, kind of not really having an appetite, just general aches and pains of the flu for about 10 to 15 days. That also told me that I probably had a "flare" of the Lupus on top of it all, would only would exacerbate all of the symptoms, make the fatigue and pain in my joints and muscles worse, thus I tried to write off the more pain that came onto a severe Lupus Flare. After over 2 weeks, almost 3 of no relief, I finally had an appointment with my PCP. I told him how long it had been going on, told him the entire story about how the symptoms first came on, that I had came in and seen one of his PA's, had a round of prednisone, after an injection of Solu-Medrol, and antibiotics, yet the pain was not any better, and by then I had a Lupus Migraine. He took blood work, and gave me another Solu-Medrol injection, hoping it was a bad flare and that this would knock it all out. Well, after the weekend, I was no better. In fact, we had decided since I had made mention on several occasions, that it felt as if my pump was not "there", that something really could be wrong with the pump, catheter, medication etc... thus I called my pain specialist and left a fairly panicked message of what was going on. Well, this was on a Thursday, he was doing surgeries and out of the office on Friday, thus Monday I could see him. I could not wait to get into his office, and I was ready to sit in the floor and scream I hurt so badly. He could see that I was in excruciating pain. thus he wanted to change the meds in the pump ASAP to see if something was wrong there, and from there do a couple of tests to see if something new was wrong, which was an EMG because I have basically little to no reflex in my right leg and foot. Plus a CT scan of my lumbar spine to see if something may have happened. So, here we go. In the meantime he gave me a very strong oral pain medication because what was going in surely was not helping what so ever thus I had to be gotten out of pain. HE changed the meds out on that following Friday, yet I felt no relief over the weekend, which I should have if the medication had been the problem as far as we knew. I went through the CT scan, the EMG/NCS that did reveal I have some neuropathy, neuritis, and some degeneration in some of the mylen around some of my nerves, I gather in my legs, from what I can interpret from the tests. The CT did not really show anything other than I have scoliosis which we already knew for a long time. I can remember being very little and the doctor would watch me walk back and forth due to the "crook" in my spine. I guess it was never bad enough to brace, because they never did. I do have to wonder now if it is a little worse. I noticed they mentioned it and the degree of the way it is curved on the CT this time. I do not think any of my other CT's have said that. But, the CT of my lower spine that has been done is proper several years old. I have not had one done for any reason since probably around 2008. I had a couple done even earlier right after we got to TX. I had a really bad bout of very severe lower back pain that sent me to the ER in Corsicana something like 4 weeks in a row. I could not get easy, and they felt I was dealing with kidney stones on each side. They kept trying to keep me comfortable and flush them out with lots of IV fluids. Finally about the 4th trip there the pain started to subside. This was before I even had insurance, so it had to be in 2006 or very early 2007. My insurance came in finally mid 2007, thus I must have had that issue with the stones in 2006 I think. Talk about a nightmare. I feared going here to our ER. At the time, it did not have the best reputation, we did not have near the amount of "good" doctors and specialists like we do now. It was just not at that time a place you went if something was very wrong. Plus they also had a reputation for shipping you off to Dallas rather than help you very much. I knew the other hospital about 20 miles away would try and help me at first. Thus they did. They even I believe done "charity" on the visits, because of me not having my SS at that time, and my insurance had not kicked in, there was no way we had the money to pay for all of those visits and tests. But, they helped me out. So, that was nice, because at that time I was really ill with those stones, and probably unless one was too big to pass or began causing other problems, that would not "blast" them because of the expense back then. When I think back to some of the problems, and especially painful issues I dealt with, all of them extremely painful yet most of the time, I was not able to see a doctor that would treat the pain also, I am surprised I have even made it this far.
I know for me now, and I just read a post in FB from one of the groups I frequent) about do you ever want to throw your hands up and quit? Also, What is "normal?" Those are two stupendous subjects to write about and dwell on for awhile. I shall close this post out and dedicate my next one to those two subjects.