I have tried my damnedest to keep the last 8 weeks or so in perspective. From the issues with the double vision, and not being able to get into another specialist until April, to the sudden onset of what I thought was the flu, it seems nothing is better. I have spent my early morning hours this morning going over in my mind the dates of when all of this last round of Lord knows what now is wrong with me began. I thought by going back over the days, the dates, what was happening at that particular time, & so forth something would suddenly dawn on me that seemed to help fit this puzzle together.
I even went back as far as just before Christmas, when Mother became down with a sudden bout of shortness of breath, that landed her in the hospital over night. All of that turned out fine, even though it did of course put a strain on us as far as stress goes. I know she was concerned even though the tests came back fine. I felt like since all of the tests were perfectly normal, there was not anything to be overly stressed about, but of course she was the one in the middle of it. from there of course a few days later was Christmas. There was not really any kind of stress involved there. We celebrated quietly, and in fact rather than cook on Christmas Day, we waited and cooked for New Years Weekend, and that made it almost more enjoyable. At that time, I was not feeling bad, and in fact everyone seemed well here in our homes. We did not go the the Casino as planned but the weather was not the best during that time, so we put if off waiting for better weather.
Then of course we had the news about my Mom's brother passing away on New Years Day. That came as a shock to all of us. But, he was 80, sounded like he just went to sleep in his recliner, and that was it. So, during that funeral, and the meal afterward, we got to see many relatives that we had not seen in a long time, and my Aunt, which would be Mom's only other living sibling, did get to come. But, she does have incurable cancer of the stomach. So, we do know that she is not well at all. Yet, she seems to be hanging in there, and so we keep on feeling blessed that she continues to be here with us and even though she seems a little "off" at times, which I feel is the medication, she does not complain of pain, and she rarely really complains about anything, other than the fact I know she is more than tired of the battle.
Again, though, that causes some underlying stress in our lives, but not anything new, since she has been ill now for quite a while. Our "New Year" did not start out the best, losing my Uncle, Mom's little hiccup, and then my daughter's entire family had been sick off and on with the flu and stomach virus, so of course there is some concern over them and the kids. Then comes this morning that I wake up and feel as if a tandem trailer truck had ran over me twice. My energy was totally gone, the fatigue was totally exhausting, I hurt from my toes, the bottoms of my feet to the top of my head. It seems there has not been one joint on me that is not aching and hurting, like someone just beat the holy hell out of me, and left me for the train to finish me off. I have had every kind of symptom of the flu there is. But, I have also had many of the symptoms that a Lupus or RA flare would bring on. Sore throats, swollen glands, headaches, backaches, my legs are just in insurmountable pain, deep to the bone aching pain, and a pain that feel as if I am on fire under my skin.
I have had the chills, my fingers are all split open to the point of bleeding, the bottoms of my feet hurt, I have been weak and shaky, my elbows both hurt, my right arm and hand stay cold, but my left at times seems to get warm. I am stiff all over, I am on edge, I cannot sleep, and then I am so tired in the afternoons I find myself on the sofa with the puppies watching a movie. I cannot wait for each 4 hours block of time to go by so I can have more pain medication. Which is ridiculous, since my PAIN PUMP had been working since 2010 and I have had to take virtually NO other medication other than some Sol-Medrol when I have Lupus Migraine. We have tried looking up every kind, in every way, searches for all kinds of rare illnesses you can think of. My hopes are that between all of the searches, symptoms, tests, doctors, etc... someone, SOMEWHERE, WILL FIND OUT WHAT THE HELL IS WRONG WITH ME!!!!!
Now, I have been to my PCP twice. They have done blood work, that I have NOT HEARD back on yet. I have been to my pain doctor. He has pulled all of the medication out of the pain pump, and completely refilled it, to make sure it does have the right medication in it. So, it should, and it appears to be working, as far as the pump itself. But, we do not know if the catheter is in the right position, and if it is working as it should. So, due to my symptoms being so severe in my lower back and down my legs, we did a CT scan on Tuesday. I am waiting to hear back on that. I have left a message, and have not heard from anyone as of yet. OF course, as with anything it is a "hurry up and wait" when it comes to tests. They want you to "hurry" and do them. Then they make you wait until they are damned good and ready to talk to you about them. Another interesting fact. I have ALWAYS been able to get my Radiology report from who does the CT Scan. Never have I had any issues. When I had the scan done this week I was told they can no longer "give the report" to the patient. Now what kind of a crock of crap it that? It is MY TEST??? I should have the right to get it when I please. So, I am going to find out what that is all about. I signed a waiver even stating I should be able to get a copy, so whatever has happened about that, I do know they did a survey and 90 percent of the people said they DID want their results, they did not want to WAIT for the doctor! Just another one of those little things to irritate the crap out of us. So. that blood work, which was done two weeks ago, I still do not know I thing about, and the CT Scan results I am sure are sitting somewhere faxed over on a desk, and I can't find out about those either. In the mean time, I hurt like hell, and have to deal with the fact I DO NOT KNOW WHAT THE HELL IS WRONG!!! I have just about lost every single piece of patience I used to have. I have had more than enough of this pain, and even more than enough of being tested only to wait until someone else decides to tell me what they found or did not find. then I go to my Rheumatologist, who has been a "God Send", BUT he had to give up his private practice after 11 years now, and go to teaching, doing research, and seeing only a very limited number of patients, just so he can make a living! Now how screwed up is that. The best doctor I have been to in my entire time of doctors and as many as I have been to that are just plain BAD, here you find one that is sincere, caring, does NOT make you wait, gives you plenty of time to talk, really HEARS AND LISTENS, allows you as a patient to be a big part of your healing and illness issues, and he can't make a living due to insurance, the high cost of overhead, employees, and all of the bull crap that comes with having to have all of the malpractice insurance, plus the list I am sure goes on and on. It truly sucks. But, that is what happens, we have the good ones that can't make it. But, the ones that rook the system, that don't care, that treat us like a number, or a bunch of cattle, they put us in one door, run us through their little maze of mess, and out the other. Then send us on our merry way, with no explanation, only to want to charge us out the butt, and then do not file the insurance right. So, we spend 8 months or more trying to get them to do THEIR JOBS!!!! I have "fought the system" when it comes to the insurance companies, the Medicare mess, the doctors offices, hospitals, pharmacies... you name it, not just for my own filing and visits, but for my Mom also. It seems that NO ONE gives a damned if they do their job correctly or not. More times than I can count on my fingers on both hands have I had people in the insurance departments at medical facilities tell me, "we do not check to see if the insurance company has paid correctly, that is THE PATIENT'S JOB?!) You mean to tell me you would rather for your facility that pays your salary get paid 200.00 on a 40,000.00 surgery, rather than check to make sure you are paid the 35,000.00 you are really owed??? then you come after the patient for their tiny part of 150.00 co-pay and want to hassle us and threatn to turn us over to a collection agency, when you were too lazy or stupid to file the claim correctly IN THE FIRST PLACE!!!! Then ask them to read the "EOB" from the insurance company!! THEY CANNOT TELL YOU WHAT IT SAYS!!! It is totally insanity!!! I know for a fact one of the surgeries I had the doctor did NOT file for the claim for well over 9 MONTHS!! after the surgery!!! Then his office tried to tell me that I owed a part I DID NOT OWE!!! I even got all of the paperwork together from the surgery, from the insurance company, set down and printed out why it was wrong, and why they needed to REFILE IT CORRECTLY IN ORDER TO GET PAID!!! And they still could not do it right!! They had sent it to the insurance under a "non-participating" doctor which was WRONG, they were, and due to that the insurance did NOT paid correctly! Then they tried to blame ME, due to their error. Literally is was 9 months to straighten it out and I don't think honestly they ever got paid on that expensive surgery correctly. You better believe when I worked in the business office of the hospital, we were RESPONSIBLE for FILING CORRECTLY!!! And we filed it again, until it was paid by the insurance right. It was MY JOB!!! But, now days they do not want to do their job, they want you to do it for them. My Moms bill for her wrist surgery is the same way. They filed it wrong, like a non-participating surgery center, thus they have NOT been paid right by the insurance. Yet they are trying to collect almost 500.00 from my MOM that SHE DOES NOT OWE!!! They told her what she owed and me also three days before the surgery, which she paid the morning of the surgery, and then they screwed it up. I have been fighting with them for at least 8 months or more, and after they promised they refiled it, I found out this week they NEVER REFILED IT AT ALL! So again they are pressuring her for money she does not owe.
The entire thing is insanity. If you are chronically ill, and have to see a doctor or have very many things done, you are just screwed. No One will do their job!!!! Okay, enough of my "SOAP BOX" FOR today!!!! I shall have more tomorrow:) Have a good weekend, and pray I get better... I hurt like hell right now!!!!
"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
Friday, February 22, 2013
Reaching, Reaching & more of the Unknown
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I'm so sorry about everything that is happening. Watching you, helpless to do anything, is one of the hardest things I've ever had to do in my life!
I'll pray that the pain doc gets off his ass and gets you in to see him ASAP, with some news and possible solutions to this new bout of pain!
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