Thursday, August 1, 2013

Seems like another ever winding road around the bend....

A bit more on updates... of course hurry up and wait... I shall give more information as soon as I feel like sitting in this chair... but here is a little...

Thank you so much Nancy Hershelman Gipson and Clarissa Shepherd!!! I love butterflies... they make me feel the freedom I so long to have from pain... well, that stupid waste of our time office visit is done, and it is HOTTER THAN HELL HERE... OMG Nancy, I know you have to be burning up also... we are under a heat advisory until tomorrow night... it will just take your breath out there... I am totally EXHAUSTED!!!! So, I will read and answer tomorrow or mmmmm probably more like by 2am, knowing me.... So, now of course the same old dog and pony show. My Doctor has to get Humana the paperwork so they can approve the injections. Then they will get me scheduled for them over at the outpatient center probably (I cross my eyes and fingers) NEXT Friday BEFORE he does the shots. Dammit, he has his "special" days at the hospital and he will probably make me wait until Friday. But, he upped my pain medication BOTH in the pump (I am not sure I told anyone he did that on Tuesday) ... It gives me more round the clock now than it was... AND I am still on the every 6 hour oral pain meds also... so the pain is somewhat "at bay" off and on now. You know he showed me something today I never thought about. When he comes over to the outpatient center to do my refill on the pump, he is "one doctor". Yet, in the office, I almost do not recognize him at all, as far as personality. HE is like Dr. Jekell and Mr. Hyde honestly. When he is over there AWAY from THE ENTIRE OFFICE SITUATION, he TELLS IT LIKE IT IS... he is bold about all of it, from insurance to my pump, etc... yet today, he was just like well, tell me what is happening (like he did not know) ... I answered all of his questions, and he kind of just "took all" with a grain of salt. HE was SO EXTREMELY UPSET Tuesday about what is really going on with me... and what we have to do to get me fixed... yet today he made it sound like no big deal... and I should be ready to go with a little shot... I told Jim if he knew the damned guy or not!!!! BUT, in that office, he has two associates. And I think he has to Keep them in mind, because those office walls can be heard through. It was just so eery to see him act like two totally different doctors. I will explain more later, but like I said, I think it had to do with "what the staff" needed and NOT needed to know or over hear... and due to the two doctors there, he had to Keep in check... it was strange... alright.. well I feel like a run over shoe... without hardly any heel left... Love you all for being so good to me.... Hugs Rhia (by the way, everyone is LOVING this laryngitis stuff ...LOL... I am totally silent... I can't utter a word. but... my throat feels more horrid than ever before and my entire mouth and tongue itch so badly... I just got a call from my PCP though.. he is calling me some medication in... thank goodness. :):) So, maybe I won't have to go in tomorrow to see him and can stay the hell at home...



Just some updates on all that is going on... I also am in the process of getting several doctors appointments. One for my feet, my dentist's ones that are already on the books, plus now I have freaking laryngitis, and I know I must have a throat infection. My throat is so bad, it feels like razor blades go down in it and I can't stand to eat hardly anything. Now my voice just completely left yesterday. So, I am dealing with that, trying to get it well for the dentist next week, plus  will probably have those lumbar injections if they can get all of the paper work, scheduling etc. done quickly enough. Please post any of you... anything pertinent, about these illnesses, about Medicare and Insurance, ... I would love to hear from you.... So, below are some FB posts that need to be here also....:)

By the way, here is a website for information on the "Prialt" I speak about for pain control. I was going to post their own website, but it appears it is "under construction"....

 http://www.webmd.com/drugs/drug-92576-Prialt+IT.aspx?drugid=92576&drugname=Prialt+IT


Too early once again. Lots going on. For one we DID get my pain pump completely filled. But the bad is I maybe looking at an extreme change in medications in the pump. Due to my extensive change in my pain, and we are just not getting it under control nearly enough, my pain specialist is talking about changing to something like a compounded medication which would be done at the huge research hospital where they have the specialists to do that. OR the other thing he mentioned was switching me over to "Prialt". I am somewhat knowledgeable about this medication, although I had no idea that they do use it in the pain pumps. It is a medication NOT narcotic at all, but it acts more on the "neuro" side of the issues with pain control. If anyone knows about it, it is made directly from "sea snail venom", and was happened about after someone got stung by one, and the story became happily for them for sure. More like a "neuro" impulse stopper, like Botox I think is what it is supposed to be... yet it is supposed to be much more powerful than ANY type of pain control in the world.  Of course with that comes, LOTS of changes slowly again, adjusting the med, then getting me slowly off the narcotics so I won't just fall over and pass away. His "wheels" were turning yesterday when he came to put the medication in the pump. He is really trying to figure out FIRST of all WHERE my pain is coming from so suddenly again, how we can fix it, and how to get the pain back under control with the pump. I see him again today.. damned I hate yet another jaunt to Dallas... so he can get the insurance to approve doing some epidural lumbar steroid injections as soon as possible. We think the sudden horrid pain may be coming from my hips or lower back. I DO have bursitis, and my orthopedic surgeon injected those last Friday. They have been so sore and hurting I was not sure the injections done a thing. But, it seems yesterday I did notice a bit hip relief. So, it takes about 5 days for those steroid joint injections to do their job. The other issue could be I have a compression type of fracture in my lumbar spine. Since I have "severe" osteoporosis, it could be that has happened at any time, and other than pain after it happened suddenly, I may not even have known. Usually with compression type vertebra fractures they can do it when you are doing nothing. You do not really "cause" them, they just crumble suddenly whenever they decide. So, that could very well be a big piece of the pain puzzle.

I am dealing with this very issue right now. I already have Sjogren's and osteoporosis, which certainly does not help. I have been avid as possible about the dry mouth, and even went back on prescription meds this past week due to severe, all of a sudden bad tooth problems. About 5 months ago, I had a chuck break off the inside of my top front tooth and the then side. It felt like it just crumbled into powder. From there, I had another one that had a cavity, and I have not had a cavity since I was 10. Then a couple of months ago, I had one top molar just come into two pieces. The back half broke off of it. About 2 days later the same tooth on the opposite had the entire side bust off of it. Then while I was looking at those, heck I noticed a cavity coming out in another back tooth, the very last one on the bottom!!!! I about went ballistic!!! I could not believe all of a sudden I had that much going on with my teeth. I am continually chewing sugar free gum, I definitely brush my teeth, most of the time twice a day. I use peroxide in my mouth after every brushing. I clean food out of my teeth with those handled plaque removers after every meal. I wet my mouth all the time... and so forth. Plus I have fought mouth issues with infection, thrush a time or two, mouth ulcers, so something seems to be going on, but never this much as far as they are just falling apart. All of us know the dentist is NOT CHEAP! Even mine that I know and have used for at least 20 years or more, has RA himself. So, he is limited as to even what he can and can't do now. He cannot pull the two top ones, and they can't be saved. He can fix the bottom cavity, and then he continues to "patch" up the smaller places in my front top teeth. And even with his "break" because he knows our situation, still when you have to make more than one trip it gets expensive. And of course we have NO dental coverage. I never had any that was worth a crap anyway. And my husband just had one of his same morals have to be pulled about a month ago. So, that one already cost us. I can remember paying about 45.00 to 55.00 or so for a cavity fill. And he usually charges like 25.00 to clean. But most of them charge at least 95.00 to pull one. And usually you can't get them to do them at the same time, which probably would be cheaper. One less office visit charge for sure. My own dentist will have to send me to another one here in town he works with for patients like myself, that has something mine can no longer due since he himself has massive pain, inflammation etc with osteoarthritis and RA. So, this other dentist does charge about what mine does. Which is nice. Still 4 office visits are probably going to cost me at last 90.00 each!!! And that is only the top of the deep well of medical expenses for us lately. Both of us have new glasses. Well, my husbands came in and they are awesome!!!! Mine should be here possibly tomorrow or Saturday. We got them from 39.00 glasses.com... and believe me the savings are exceptional. I know we saved a bundle on both of ours. Jim is just about legally blind so his are not cheap. Plus his eyes changed so much, that he had to go to a progressive lens (LOL), then we both get the "Transitions" in them. so, his usually due to the type of lens and thickness run at least 300.00, maybe more with frames. Mine now are of course progressive, but also both lenses have the prisms in them also. Which costs me more too. So, between us, we saved over 50%!!! So far his are perfect and he loves them. I have ordered from them before and loved mine, so I am hoping mine are perfect also. So, any of you doing glasses, you might take a look at their website. You may be able to really save a bundle on glasses. And they have a 100 percent you love them guarantee and that they will be correct, plus they are fast, and their customer service is wonderful. I have been very happy with the whole experience. Well,  sorry for my rambling. I am making up "typing" for not being able to utter one word with the laryngitis. Boy my dogs look at me crazy!!! They were puzzled when I tried to talk to them yesterday.... you ladies I pray have good days ahead, without pain and fatigue.... and hoping for all of us to have a better quality of life....

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