Starting 2016 The New Year Off Right! Lupus, Joint problems, Surgeries, Pain Pump Replacments, Cervical Disc Surgeries, & Seeing the "Positive" Side of a New Year.

Morning Everyone! Well, I must say, I know there are MANY, MANY of us that are GLAD to see 2015 come to a close. Gosh, the number of people that I've came in contact with both on Facebook, and here in my hometown, that have either endured so much loss, or have been extremely ill, in the hospitals, had surgeries, have had major issues with Lupus, RA, Heart problems.... Sjogren's and the list just continues.

I know I face, (now the the 1st one the pain pump replacement surgery is done) at least one surgery. I have to have that cervical disc above where my doctor repaired the others (he is kind of wishy, washy but I think it's probably C-2-C-3.. not sure but am going to look it up. He did an X-ray and saw that I have a disc, at least one, that is 80% "collapsed" which is causing all of the severe neck, shoulder blade, and down my shoulders, into my arms, wrists and even thumbs... pain... at times it is almost unbearable... if I drive even to Dallas about 40 miles or so, it hurts so badly... so I know that has to be dealt with.

Also, the lumbar/sacral disc at L-5 (I think) and S-1, anyway, right at the bottom of my lumbar spine where it begins my sacral spine is also a mess... plus I have some issues with the "opposite" of scoliosis, where my spine tilts "inward" rather than outward... and I've had a "sway back" all my life... so that is certainly not helping but I don't think there is anything they can do about that, but he can fix the disc down there.

Once those things are done, and then I can go to my Rheumatologist, and we re-evaluate all of my medication for RA/Lupus etc... and possibly make some changes then I may begin to see some positive changes for me as far as function of what I can do, and lesser pain, hopefully.

So, even though I "make" A New Years "change things" list... some of it is more those types of things, so I can again have some quality of life...

I also know we must "deal" with my Mom, and all that has been going on with her.... she is much better after the injections into her lumbar spine, which is awesome, but the issues about possibly having "dementia", or worse, ALZ, have to be looked in to...

Other than that, I want to be able to do MORE of my advocacy work, and get back to cross my fingers, eyes and toes, of finishing my book... I've been trying for 2, almost 3 years now, and was on a roll, then between the accident with Jim, the lawsuit, trial, illneses, my teeth and losing those, then Mom being sick, it seems I cannot either find the time, or have enough "energy" to stay and type on it. I have some other things that I had not thought about that I am adding to it. When I was telling one of my high school friends I grew up with about my "home life", when I was young... she told me that I really needed to address those in the book. They in themselves caused me to "think" and do, or not do things throughout my entire life. Nothing that Dad did that was "bad... he was a great Dad, BUT his being over controlling, even when I was in my 30's, and him trying to "help" but he was also trying to place things that he went through during the depression, "on and in my life"... and thus things like me marrying much too young etc... all have had a very prominent effect on how I've lived, and the things I've done, and why I didn't do some of the things I so wanted to do....

I inend on giving YOU, my BLOG READERS much more "facts" and information about "All things Autoimmune"... I hope to really ADD some very important issues, from medications, from how the government effects our lives, about the latest things to get help. hopefully get more people involved in GOOD clinical trials (I know people that have been truly amazed in clinical trials) and work with WEGO, The Arthrhtis Foundation, With the Pain Foundations, plus others such as the Lupus, Sjogren's, RA... and more things that can help YOU as patients, caretaker's. family, friends.... to understand the way these illnesses effect each and every part of a life, from physical, mental, emotional, spiritual... and why "we" do or do not do, things.... due to often "invisible" illnesses and pain....


One for instance, I had "major surgery" last Monday. I had my pain pump that "stalled" replaced. I am really not supposed to be doing much of anything, BUT I am by myself for now, so there are things I must take care of... and can't wait... So, I had not been to the market in a week, and needed a few things... NO, I was NOT feeling the best, but I got dressed, "forwent" the makeup, and went to the market. Well, I was not "moaning" in pain, or even acting as if I had "surgery"... the only things I did do, is ask the guy bagging my stuff to keep my "bags" light this time, because I was not supposed to life anything over 5 pounds, and was not supposed to use my arms over my head... well there are MANY things a person needs to get, reach, etc... and it calls for putting your arms over your head..

Of course I got home, and I was "good" I did bring in one bag at a time, rather than grabbing several, as usual... and tried NOT to do anything he told me NOT to do... yet, people around me in the market, unless I "told" them would have never known I had "surgery" or that I was in pain..... we sometimes "hurt" and it shows.. but we also have learned to "suck it up" at times, and try to not let that type of thing effect our lives... I don't want to think someone feel "sorry" for me... etc....


Okay, well I need to get some other things done, but I wanted to "catch up" as to what 2016 shall mean HERE, and what I plan to try and do to HELP MY READERS!

Wishing YOU and YOURS a blessed, healthy, peaceful, calm, faith filled, renewed hope and love for 2016!

Rhia

Trying to Remain "Positive" in all of this horrible ordeal... some of it I am unable to talk about at this time, but hope that shall soon end....

At this moment, I am not able to give any details, but I will say for now that the "nightmare" from March 26th 2014, hopefully is coming to an end very soon. My hopes are by the end of today, or at least by the end of the week. It has been a very, very LONG, winding, and life changing road, to say the very least, and it has taken its toll on not just myself, but everyone else, and tore the "life" I knew to shreds.... Let's just hope that it all ends, and ends on a "good note" for this side... People are "fickle"... so I could not "read" the looks on faces last week, but my hopes are that all of the many tears I have cried since that fateful day, and that horrid phone call, have not been in vain... after things are said and done, then I can say more....


By the way, just got home from Mom's Kidney sonogram, and I FINALLY got a call from my PAIN DOC'S office! My pain pump IS APPROVED, thank goodness, AND they were going to do surgery this coming Friday, BUT due of course to the abscesses, I have to wait, and get a "clearance" from my PCP... and I have to call them to let them know I do not think these antibiotics are working.... and then tell them they HAVE to GET ME WELL ASAP so I can get this surgery over with! Wish me luck, and still "no word" on the other item yet....

UPDATE!!!! Pain pump stall, My Mom's health issues and finding out today about this breathing problem and hoping it is NOT her heart valve & dealing with LIFE and Autoimmune everything!!!!

Okay everyone, please PRAY for MOM and MYSELF! She sees the Cardiologist this morning, and I PRAY her shortness of breath is NOT her HEART! She has a very "leaky" valve and I think I explained before why the shortness of breath... and our Cardiologist has had it under control with medications, and her not taking in as much fluid daily... but she has not been well at all over the past 2 months or so... and now her Kidney functions are low, which they were a bit better earlier this week but she still has to see a Nephrologist next week. I am praying the shortness of breath is possibly allergy related, because she does have allergies, like many of us, developed the late in life.... but if it is her heart, it could mean open heart surgery.... AND as far as my pain pump... I am NOT out of the woods yet.... it appears that it "restarted" itself out of the stall on Sunday... which is weird, because the Rep from Medtronic that saw me last Friday, had turned off the alarms, so they would not drive me nuts, but I kept hearing it go off, until Sunday.... but they had turned the medication basically to a minimum so I could take oral pain meds until we do surgery to replace the pump.... SO, yesterday my pain doc... did put my meds back going as they were... and he told me, not to get too excited yet, because it could do this again, and for the next 48 hours or so, I am having to watch it very closely... BUT, he also made a mistake when he reset the pump to send me the meds.... I have an "optional" Bolus every 8 hours... I can give myself an extra amount of medication... well he sat it WAY LOW rather than were it should be.... it was supposed to be 1.001 and he missed the decimal and put it at .1001 which is a HUGE difference... so now my bolus is really not doing a thing for me... that is just nothing compared to what it should be... so I called yesterday and left a message... but I guess I will here back today sometimes.... so between all of that, Mom, and now it looks like this stupid other "lump" on my right thigh is also in the process of going to "abscess"... it is now turning red and appearing like it might... plus I had been running fever off and on for a few days... which I thought was the pump issue causing it, but now I thinking this stupid lump could be the problem... when it rains it comes a flood on my life it seems.... lots of other things also... so there is what I know for now.... I appreciate all of you that are praying for us.... Rhia

When LIfe decided is to Just apart where do you turn, what do you do, and how to cope, deal, and figure out all of the why's, what's, how's. when's... chronic pain and I am in INTRACTABKE OAUB due to my PAIN PUMP STALLING & Meaning surgery for a new one!

I know there are "lots" of sayings, what does not "kill" us makes us stronger, when life gives you lemons, make lemonaide.... and so forth but WHEN ENOUGH OF DESPAIR, GRIEF, AND MISERY... ALONG WITH EVERYTHING GOING WRONG... COMES AROUND all of those "sayings" fly the heck out the window.... i was already in enough pain and despair, and now for my pain pump to decide of all times to "stall"... this is just not a good thing at all for me.... I am desperate....

Yes, right now is the very WORST time for my pain pump to decide to go out... and there is no way to "fix" it... once it "stalls" as mine has, then major surgery and a new one is the only way to take care of the issue. OF course my pain doctor prescribed a massive dosage of Morphine Extended Release to try and make up for "some" of the lack of the pain pump, but there is really no way to give me enough "oral medication" to take care of all the pain.. I have had a bit of what I might call "withdrawal" but not so much that as it is severe and almost intractable pain since it finally completely went out. They basically "stopped" it on Friday - Medtronic who makes this pump, has reps that help with these matters... so one of the Reps met me at my pain docs office on Friday morning, and even though he was in OR, his nurse was able to get hold of him and they decided to turn the pump to "a minimum" dose which is basically nothing... once all of the meds finally went through the catheter that delivers the meds to my spinal canal, then of course the pain began and yesterday was horrible. I almost did not even find the morphine... in fact I called here in my home town almost every pharmacy before leaving Dallas... because I felt I may have problems finding that high dose of medication in Ennis. But, fortunately one of our pharmacies did have it... so I came straight home, dropped it off, got Mom to her house, and picked up the meds.,, I knew I did not have very long before I would not have any medication in my body, and so it was... by the time I picked up the script, got home, and settled in, I had to take a pill, and since then I am alternating between the MS Contin ER and then my Oxycodone, which is my oral medication I took even with the pump for times that I had more pain than others... It is very difficult to take someone who was being given about 11mg's right into my spinal fluid daily of Dilaudid, and try to replace that with "oral medication"... as I said they really cannot give me enough, not by mouth .... the pain pump delivers it straight to my spinal fluid, thus I never had any side effects, no breathing problems, or anything that oral pain medications cause. Since they do not go through my entire system, then I take a much smaller amount daily, yet it is much much more efficient, and without all of the issues that as I said oral meds cause... I knew that the pump had about a life of 7 to 10 years... and then it would have to be replaced... the battery life in them is about 8 years average, thus they were puzzled as to why it had a sudden "motor stall"... it is rare, very rare, but heck whatever is "very rare" I can know will happen to me, always does.... they even asked me if I had been around anything electromagnetic, like an MRI, or such because that will cause it to stall, but no the only thing I went through was at the court house two times to take paperwork in to the District Clerks office and went through the metal detector, but that has been now about 2 weeks since my last time, so that should not have caused the problem... I even stay away from my microwave... I turn it on, then back away... even though it is not supposed to have any effect on it, I have always been extremely cautious because of the pump and knowing that certain things can harm it.... I have been to the docs offices several times over the last couple of months, with me and my Mom, but still nothing as far as any type of equipment that should effect the pump... I even thought since I had been doing lots of stuff here at the house, moving big plants around and lifting some stuff maybe I did something to it, but nothing like that would cause the motor to stall... and as far as the tubing from it to my spine, it was there in the beginning and has been "grown into " the place now for 5 plus years, so that should not effect it... I had a couple of chest Xrays but that should not bother it either.... I had been moving plants around and potting soil... so I had lifted some things that I probably should not have but that was more due to my back, and my shoulder replacement, and nothing to do with the pump... and why now.... who knows??? as I said this is the very worst time for this to happen... I have Mom and her problems and she has a couple of doc appts but both fortunately are here in town, so even if I can't go she can go by herself... she would not understand anything they say probably... but that I can find out so I am not all the concerned about that... but then there is the issue of the "court hearing" if the truck driver that ran over my soon to be ex-husband that now they still have not offered a settlement... so if that does not happen this week basically that means a jury trial that may last a week or more and that means a trip to Dallas every day for me.... and if I have surgery, there is no way my doctor will allow me to even "ride" to Dallas and sit in a court room, much less drive myself... and this needs to be done ASAP - as soon as the insurance gives the okay, the pump surgery needs to be done.... which hopefully will be this week sometimes.... I have all of the divorce paperwork done and the court date for that is not until Jan 4th, so that is not a problem... thank goodness I did get the papers all done and filed.... anyway, I was in the middle of trying to adopt a new puppy also, and now I thought Mom's stuff would make me postpone that but now, until I have this surgery, I have to postpone getting a new puppy, and will probably have to have my dog sitter to come over and check on Bub's.... I maybe in the hospital 2 days and a night... and should be home after that... but I will be sore and tired for a few days once that is done.... anyway, it is all just a horrible mess right now... and honestly I don't know which way to turn... I had to miss church this morning, but I am in so much pain, there was just no way I could get dressed to go... plus the weather here is horrible, cooler, still raining, and even though we did not have as much flooding, some of our roads are still flooded in places, and you have to watch where you drive.... anyway, I have not even felt like getting into the shower and I have to do that, but I thought I would wait until a bit later in the afternoon, and when I have enough of my pain meds in me, then I can get in the shower and I am sure the warm water will help some of this pain... I have discovered one thing..... again not good... MY LOWER lumbar spine does need surgery.... after the pump meds began to wear off, my lower lumbar spine/sacral is causing me so much pain, almost more than anywhere else... so now I know why at times even with all of the meds I've had problems there... I had been told I needed at least a one level surgery there, but I know that does now need to be addressed.... it is effecting even my legs badly, the pain down both of them is terrible.... so again not a good thing... but it does tell the story of what problem I am having with my lower spine that effect my hips and my legs.... Thank you all for the thoughts and prayers... I cannot really sit here much, so I have not been online other than now, and earlier to post at first what was going on... I need all the prayers I can get right now... I don't even know who will get me to have the surgery, then drive me home afterwards.... so there are many "little" things that are "big things" with all of this....

NNow just when I thought it could NOT get WORSE my Pain pump Stalls!

Well I only thought things could not get worse - my PAIN PUMP "Stalled" yesterday and now I am probably getting no medication at all from it... I did not figure out until late yesterday the "beeping" sound I was hearing was my Pump going off and not my weather radio! O had taken a bolus in the morning about 8 AM yesterday, but then at 4 PM I started to give myself a bolus and it make the sound  like not it was not time yet... so I looked at it and discovered it was sending out an error message "8476" that means "Call your doctor, pump has stalled" now it is going off about every 15 minutes and I am beginning to "know" by the way I feel I am not getting medication.... but my pain docs office is closed on Fridays and I left a message at almost 5 yesterday in fear I would hear from no one, thankfully the nurse had gotten my message, called the Rep from Medtronic who called me right back himself... but the only way to know what is going on for sure, and what to do to "fix it" is meet him where he can run diagnostics on it... that means going to Dallas this morning in possibly HORRIBLE weather.... which I hate Dallas without slick roads much less slick ones and raining... but I have not much choice... I am beginning to "feel" the withdrawals from me not getting meds, and the pain is slowly getting worse... I have oral pain meds to take, but I have to make sure, that I am not getting meds from the pump, so I don't take too much oral pain meds... I am just through with it all... I've already been in a horrid mood and feeling about things all week, with everything going on, the vvery last thing I need is to possibly face "surgery" on this pump... if it cannot be "fixed", then they can turn it off, but that mean oral meds, which will take a great deal more medication than with the pump... I am just at my wits end... I did not sleep, I am beginning to know the pain meds are not in my system, and the pain is increasing, and now I face if I go horrible weather to boot to Dallas..., it never ends... plus No one to take me on top of it all....

Medtronic's Pain Pump Medtronic "2" has issues and needs to be "fixed" - Bothering me immensely this Pump has been a total Life Saver for Me!

 I've had the exact same pump in since 2010! In fact it will be 5 years next month, in October since I had it put in. I've never had any problems with the pump. I get it refilled about every 3 months, and it can always be adjusted, and has been a couple of times over the years. But, I can also "give myself an extra bolus" every 12 hours with the 1st "PTM" that came with this one. I was one of the 1st patients to get this particular one. I have a handheld device that after 12 hours, allows me to give myself an "extra" bolus of medication. I can hold the "Patient Treatment Manager" (I think that is what the PTM means) up to the top of the device and it sends a signal to it and if 12 hours have gone by, then it gives me a tiny extra dose, each time I do that, spread again over a 12 hour time frame!


I knew when the pump was put in, that after about 7 years or more, I will probably face having to have it replaced. The batteries can run out, but it can also be longer than 7 years also. Yet, when that time arrives I want to know I can get the same one implanted!


It has been one of the most positive changes in my life. I just don't know what I would do without it!










http://www.painnewsnetwork.org/stories/2015/4/27/fda-order-stops-production-of-medtronic-pain-pump#at_pco=smlrebh-1.0&at_si=55f813c00f886161&at_ab=per-3&at_pos=1&at_tot=4