Wednesday, February 6, 2013

Dealing With Lupus, Doctors, Symptoms, & the "Thrill" of It All...

As I began writing this very early this morning, rather than becoming a "short post" for Facebook to a few of my friends there, asking for their thoughts and prayers today, it became apparent to me, that this is a post for my blog. I am supposed to be "sharing" my walk through the destiny, the unknown, the voracity of the entire situation when it comes to dealing with Chronic Illnesses and the Pain of it all.
When I say pain, I can of course guarantee I mean "physical" pain. There would be no other way to get around the majority of these disabling illnesses than to say they cause more than just a bit of pain at times. There is much more though involved when I say "pain" as we deal with these life altering, wretched types of sickness, that plague the body, mind and the spirit, sometimes spirit being the optimal word! There maybe days, weeks or even possibly months, I go without a huge "flare" that involves a great deal of physical pain. I have been fairly fortunate up until about 9 weeks ago, to have had much relief from the physical pain due to the pain pump internally, the other RA medications I take by injection, the oral medications I take daily, plus two pills for pain I am allowed over and above it all daily, if I have a bought of "break through" pain. When I am out of a flare mode, for the most part, unless we partake in some of the extremely crazy types of weather we have been having this past couple of months, the pain stays at bay enough that I can deal with it. Do NOT get me WRONG, though! PAIN never GOES COMPLETELY AWAY! You can find your place hopefully in the ordeal of medications, treatments, exercises, and taking care of yourself that pain can be manipulated down to a manageable level. But, for the most part of my life, I have some type of physical pain daily. It may not even be enough to mention, but under neath it all, it lies waiting, ready to pounce, and drag you around like a mountain lion on a goat. It is never more than an arms length away, and any of us that can say differently are the extremely lucky ones. I feel I am very fortunate because I had mine under control for about 4 years. As I said, I still have bad flares, I still have some severe pain, enough to send me screaming into the night at times, but I have had to learn to deal with it, and make peace with it, just to survive mentally.
Yet, when it comes to the emotional burdens, the toil the mental anguish these illnesses take upon us, then you are opening a whole new can of hell at times. As the physical toll of pain takes you under, the mental portion just becomes almost too much to bear. It is a vicious circle, that over and over again, collides into each other, bearing your soul, to what I feel sometimes is like pouring acid on a marshmallow. You cannot avoid it, you can as much as possible deal with it, but it is going to put you on the couch, in the bed, in the hospital, at the doctor, something, sometimes, when you least expect it.
That is some of what I am dealing with now. The physical pain is horrendous these days. It has been, and not just for myself but for many others suffering these straight jacket types of illnesses.. in other words, It is a wonder we are not in straight jackets at times. The weather extremes and the craziness of it all has not helped whatsoever. That truly makes it terrible on the bones, joints, any kind of illness like arthritis, RA, or any that effect those elements of the body. Nerves seem to become inflamed. and honestly, any type of inflammatory process that is in the body tends to be much worse during the high humidity, dramatic changes of pressure, large fronts that come in and hit to make things go from hot or cold to the opposite quickly, and so forth. Those with osteoarthritis, which is as painful as hell also, tends to act up with dramatic weather changes also. Migraine headaches, and so forth. So no wonder if you already have "connective tissue" issues, then the inflammation is going to be painful, stiff, swollen, feverish, and hard to put up with. When that cycle begins and you have no relief from it, it takes its toll on your entire existence. Your body, your mind, your stamina, your attitude, everything is effected, and usually not in a good way. o, as I go on to post the bottom of this, which was what I put on my FB page asking for friends to keep me in their minds and prayers today, I pray you will follow suit if possible, and say a prayer for me, as I delve into the realms of hopefully finding out at least partially what the heck is happening to make me much worse right now. Thanks for all that read and "listen". Please reply!!! I would LOVE to HEAR YOUR THOUGHTS! Rhia

I am not sure to be thrilled this day is FINALLY HERE! Maybe I should dread it??!! My several month follow up is finally here today at noon with my PCP, who is also honestly my primary doctor that takes care of the Lupus end of my illnesses. He "Found" the Lupus issues, with careful listening of symptoms, and then he did all of the initial blood work that found the high ANA levels, and so forth to indicate autoimmune issues. For that I am grateful in many ways, that the "hunt" for years was over with, yet it has really been an uphill epic war on my body, spirit. and life ever since. From every physician on the Earth, to every symptom, all of the surgeries, complications, then to throw RA. Sjogren's, DJD, DDD, and the entire gamut of stuff "wrong", I truly am a complicated patient. I realize how fortunate I am to have him as a doctor that really is taking care of me as much as he does. All too often, especially those of us with extremely complicated health issues, and rare disorders, get kind of "kicked" to the curb, because I think doctors are frightened of us, mainly due to the amount of time we take up, and then having to watch so much that can happen to us quickly. As I have written down a very LONG LIST of things to discuss with him today, I realized that even my Rheumatologist, does not really "deal" with the other AI illnesses, not even the Lupus. My Rheumatologist is more on the RA side of it, and takes care of that portion of my illness. My PCP had already gotten my meds kind of in order, had my case kind of going all on the Lupus end. He just felt he was not as good on the portion of the latest RA meds, like Humira, Remicade, etc, and those that require injections or infusions. I am not sure I can even have any type of infusion in my home town, and plan to ask today. My issues are many this time. It seems since before Xmas, I began to either have a flare and the "flu" all at once, or they were pretty close together. Plus I had the added stress of the holidays, Mom's ordeal there just before Xmas, the her brother passing away, and I then got a kidney infection, and I think I probably put off going to my doctor way too long, even after I knew I may have an infection. My wide range of symptoms, and some of them also either new or much worse is nuts. My list is pages long, (small notebook pages) yet pages, some that are really upsetting me. So, since this appointment was originally set for this past Monday, and my doctor had to change because of his schedule, I pray they have given me a decent amount of time today. I have lots to discuss with him, and I intend on not being rushed out of the office, before I hope to have some answers, or at least some suggestions on things we can do, not do, change, etc. From this whole weight thing, not sure about that (as I have speculated, it could be medication/illness, but I just cannot fathom I would be putting on any weight due to my diet and exercising daily), to now "high blood sugar" issues that just reared their ugly head late last week, to worsening stiffness, pain, fatigue, all as if my medication from RA meds to this pain pump has just "quick working". My legs hurt constantly, my fingers and heels splitting open, my "Lupus Mask" worse, fatigue has been through the roof at times, and you name it, it has either gotten worse, or has began, and I had not had it before. The Double Vision issues, honestly are worse. ONLY when I sit down, get my head still, like to watch TV, but non the less, it is there, and not better. This other eye specialist could not see me until APRIL 4th!, and I made the appointment in November last year!!! IT is nuts. I do see my Rheumatologist next week, but with his sudden extreme changes in going into a "teaching" facility, only see patients part time, and doing research, his time is not what it was when he had his own office, and a staff that had been with him for 11 years. When he was there, patients were definitely priority, he took all the time we needed, he talked, he taught, he discussed, he listened.. He is still the best Rheumatologist I have ever seen as of yet, but due to his changes in his own practice and life, things also changed for us it appears as patients. Now I give him this, last time I went about 4 months ago, he had just moved, just started the research/teaching stuff, had an entire new staff, entire new office, building etc. So, I felt he was probably a tad bit out of his element still, and so was I as a patient. I was accustomed to the other way we did things, and it was much different at the new office for us also. Plus, you have to take the appointments you can get with him. Due to his limitations on seeing patients now (I was very lucky to even get to continue to see him honestly), sometimes it will be longer between visits, and trying to get messages to him could be different. Although I have had to call once since he moved, and I did get a call back quickly from the nurse, but it is just "different". All in all, what I am trying to spit out, or write out I guess, is that I am in a conundrum of emotions this morning. I am in dread, in fear, in relief, am not looking forward to this, am glad to hopefully get some answers, find some relief, and so forth. My mind and my body have ran the entire globe of mental, physical and emotional races in the past couple of days, and I am all over the board with concern, and hopefully some kind of relief. I fear some of this, I fear the answers, I fear NOT getting the answers... etc, and so on. SO, once again, I ask, I beg of each of you that read this to take mercy upon me today and pray that I get some kind of relief in all ways. I NEED answers, I need to get rid of some of this physical pain and fatigue. I need to KNOW no matter what it is WHAT THE HELL IS WRONG, if we can figure it out! I have researched everything I can think of to see if I can provide further insight as to what my symptoms might mean, and I hope my LIST will help somewhat. I do KNOW that if any DOCTOR can figure this out, or at least part of it, and then where to go from there, my PCP can. Bless his heart, he is an Angel send from Heaven for sure. So, wish me luck, keep me in your prayers, and know I am so very appreciative of all of you and your support....

Thursday Feb 7th 2013
So, here is the outcome from yesterday's journey to the doctor... I thought I would share. Still waiting on blood work, and so forth but at least I feel I got some things answered, or at least headed in the right direction...

 I know for myself, I often find it difficult to "gripe, whine, fuss and moan" here on the group. I guess I know there are so many of us in the same boat, and I hate to be a negative voice when I know we are trying to deal with pain, fatigue, illness and life, and try to get something positive out of this. Yet, I also have found that I can't just hide all of the bad stuff with my head in the sand, and not say something about all of that part also. It honestly has been an extremely difficult 8 weeks or so on myself, my husband and my Mom. All of those things, including the illness also effect us. Even my doctor yesterday, bless his heart, did not know about much of many of my latest issues, because rather than come and go to the office with a "same day" trip for several of these, I wanted to wait until I could have him "to myself" for a regular office visit. I knew I could then "pin him" down for a total visit, not just a PA (even though his PA's are extremely good), I knew he needed to hear a great deal of this directly from me. He was the one that began this "journey" with me first with his diagnosis of the Lupus, and so from day one, he has been with me through it all. He was of course just as mindful, compassionate, empathic, he listened, he discussed, he suggested, and he did all of the things we both felt maybe necessary to find out what is going on with me. He felt a severe flare of course is some of it. The double vision, he still thinks could be a "muscle" issue with my right eye, but wants me to let him know how a 2nd dose of corticosteroid that they gave me yesterday by injection effects it, if any. There is still a possibility I could have that Giant Cell Arteritis, and the prednisone, "hid" it basically in the biopsy. So, if anything like that was going on a very large dose like they gave me yesterday might really reverse the symptoms quickly. That is what they do for it anyway. Give you a very high dose of prednisone, but usually for a long length of time. Of course that is the other issue, the weight, and he feels part medication maybe, but could be Diabetes, which is also a huge possibility due to prednisone (odd how that drug is a miracle medication and the devil itself all at the same time). Plus my history, Dad had Diabetes, but late in life, thus I had not given it much thought until lately with the symptoms. Same also antibiotics can make blood sugar act up also, and I started those when that all happened, so could be another "link" to the chain of crap going on with me. He did do blood work. He took 4 tubes of blood. I had not really eaten anything, but I had creamer in my coffee, so doing a blood sugar testing probably would not do any good. But, he said we would look at that when this other comes back. He did screen my glucose levels, and did several other tests, so that will help find out whatever, if anything I hope is going on. Anyway, He is sending me to a neurologist quicker than waiting on that eye neuro specialist in April. He said we may be just not aiming at the right spot, but putting it off till April since it is worse is not what he wants to do. So, this is one way to check out to see if it has something more neurological, or if it is more eye, muscle etc related. LOL, fortunately I was his last patient before lunch. Good thing. My list was long, and he was not getting out of that room until I asked it all. He is really a blessing, and I am so glad he is right here only a few blocks away. He had already saved my life once, literally when I got so ill in 2010. I think without him I may be dead honestly.


To make sense of all of this post below, I will update you a little on my situation. The severe pain in my lower back, legs, ankles, severe headache, and just feeling like sitting down and kicking, crying and screaming has gotten worse. I have not slept now for very long at a time the past three nights. I  did finally decide after going over everything in the world both myself and my husband can think of, from running the gamut of possible bone cancer, Leukemia, Diabetic Neuropathy, Kidney Stones (still wondering on that one), and of course worsened flares of Lupus and/or RA, that another possibility was that my internally implanted pain pump device has somehow either slowed down, or is starting and stopping, etc... to cause me to at times be without much of the medication it is supposed to give me all the time in a steady tiny amount. Of course that would put me in a HUGE WORLD OF EXTREME PAIN, along with make me feel some of the other things that are going along with it. Well, I did my research, of course wondering if there has been times that these pumps some how malfunction, etc. and they do NOT warn like they are supposed to. Of course I have found several occasions that in fact it has happened. They are definitely designed with all kinds of fail safes, warnings etc, but they are machines, computers, they are "Man made", and anyone knows that a computer can do strange things, almost "human like", at times.
So, after reading that it is a possibly, although slim, still for me (MURPHY'S LAW) always, things like them NOT beeping, ticking, etc happen, batteries for some reason quit way early, the medication can "crystallize" and stop up the catheter, even infection, catheter just may be pinched, I mean there can be a number of things cause this issue, and I also have what is called a hand held device "PTM" where I can wirelessly hold it to the pump, and it does readings, I can also give myself an actual "bolus" (additional tiny amount) of scheduled medication twice daily, etc. So, this machine if something is wrong, SHOULD give some type of error message, but so far, nothing. "I" am not "ticking"... probably good thing if I decided to go somewhere... they might think I am some kind of "bomb" dammit... and this device is not showing an issue. So, I did put a call into my pain specialist on Thursday and left a very long, detailed voice mail for the main nurse that helps him with these pumps, and she is very aware of my situation, and knows if I am calling with something like this, I feel there could really be something very wrong. They know if I call, I am very concerned, because otherwise unless it is time to refill the pump, they do not hear from me at all. Thus, I knew my doctor did surgeries on Fridays. He is only in the office half a day on Fridays, and I was not sure I would even hear back at all. It did not dawn on me about the pump (even though I had been kind of "teasing" saying I think my pump quit, that is what it feels like, like I do not have ANY of the medication, at all, at times), until fairly late Thursday. But, As you can read below, I DID get a phone call back from this lady, who is a wonderful woman, that I know is doing and did do all she could yesterday, and she would have called me to let me know something different had there been something else my doctor or my person who handles my "pump" case from Medtronic say any different than I go in Monday at noon to see them.  She DID say she felt like something could BE wrong. That she knows me well enough that from all that I am saying, a problem could be occurring. I was a little upset that my doctor DID NOT want to see me yesterday. But, I also knew she may not have even been able to reach him due to surgery until very late yesterday, if at all. Thus, even the Medtronic rep may have been out of pocket etc... so I am doing all I can, to the best I can to try and not pull my legs and head off, and sit in the floor and scream... which would NOT help a thing. Thanks for listening... and I pray NO ONE goes through this again!! Whatever is wrong, I just want it found and see how we can stop this crap already!!!!

Post below continued from a Facebook post to a group I belong to with more information:

I did not get back here yesterday. I was just hurting so badly, there was no way I could even think about typing, heck even thinking for that matter. Well, as of an update. I DID GET A CALL BACK from my pain specialists head over the pain pumps etc. He was in surgery, which I knew he does surgeries on Fridays and usually is not in the office but half a day. She got my message but late Thursday rather than "earlier" as I had left it. Well, knowing that staff they did not get it to her even though I said URGENT! Now I know as far as her, it was URGENT when she heard my voice and I told her what was happening. They take me very seriously when I call in, because they know unless it is something I feel could be dire, I don't. She was in the process of getting a call into the Medtronic rep Julie (who was there when they installed the pump at the hospital and Medtronic is who made this one), to ask questions and tell her exactly what I said. I went through the entire gamut of flu, Lupus, Hell Jim and I think I could have bone cancer or something like that, have went to my PCP, have had blood work that is not back yet, have an appt with my Rheumy next Friday, on my birthday of all days!!! ALMOST a VALENTINE BABY! Anyway, She was also in the process of looking up the same things I was about the pump having issues before, and also getting a message over to my pain doctor who was in surgery. He does do surgery Fridays, and he usually refills pain pumps that need it then also. So, I know sometimes it is very late before he even is able to talk with her depending on what was happening. She had me on the top of the list. She DID AGREE that by everything I said, and the way the pain began etc... that even though she had not heard of it, that it sounded like it might be the pump, catheter something happening where at times I am not getting medication, or getting too little etc. Of course all of us know these things come with fail safe thing, but it can happen. The thing is supposed to ring, beep, tick, and then I have a hand held what they call a "PTM" monitor. I can wirelessly "talk" to the pump, so it will tell me supposedly if there was a problem. And I have checked it a 100 times, and it so far has not "warned" me as far as that stuff. Anyway, I have an appointment Monday early afternoon to see him. Of course she was trying to see if she could get him to possibly allow me more oral medication since I am in such extreme pain, or get the rep to possibly meet me and do a read out on this thing and see if there is an error they find etc. But, it may be anything or maybe it is NOT it at all. Who knows with me?????!! So, I did NOT hear back, thus I will see them first thing Monday after lunch. And if things get worse, change, etc. I will go to the ER, have them get hold of my PCP, call my pain specialist etc. Until then same thing I guess I am doing. Use what I have as I can, and try to keep myself doing whatever keeps them from putting me on this floor SCREAMING AND CRYING in pain!!! THANK GOD it so far is NOT all the time, BUT IT IS GETTING THERE. IT was more bad than good yesterday. So, that also scares me. I even thought about going to the ER and make them do a CT scan for kidney stones. Again IT almost felt like those but I also hurt all over, and have a bad headache at times also.

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