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
"Through my heart's work of writing, I share with you my complex journey a top the mountain, sliding down, crawling up, & living through the realms of Autoimmune Arthritic Illnesses. Taming "The Wolf" Thru each Day... One Step at a Time … Together We Are Learning to Survive. Please follow along, to New Beginnings - looking Thru the Window Pane of Pain in life where we shall find our journey leading us to - New Perspectives
Tuesday, March 26, 2013
One Baby Step At A Time "Life's Surprises"
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