Showing posts with label pain pump. Show all posts
Showing posts with label pain pump. Show all posts

Wednesday, January 20, 2016

A Few pics of me Signifigant especially to me but hopefully an inspiration to others also




I never thought I would ever see the day, I could fit in these jeans again. I have had them for more years than I care to tell, something like 20 at least - and after I was diagnosed with Lupus, RA, Sjogrens, had all of the surgeries, and then the pain pump put in my right side, I honestly never thought I would be able to wear these, or any waist line high type of jeans... thank goodness I have always been a huge fan of low rise jeans, they fit under the pump... but recently I lost some weight and decided to drag these out of the back closet, wash them and give them a try! And Ta-DA! By heck they fit!!!!!

So, for me this was a Kodak Moment... after going through the weigh issues after medications, surgeries, and I would take some of it off, then have surgery again, could not exercise etc.... or would have to be on high doses of corticosteroids for a flare, and here would come the weight on again.. I have been able for the most part to keep it to a decent level, but it was still depressing for one, to have issues that you have no control over that cause weight gain, loss of teeth, hair thinning, skin discoloration, not including the scars from many surgeries, knee replacements, shoulder replacement, the pain pump incision and also it sticking out from my right side.. so this was a moment for me, that made my day, week, month and part of the year!

I SHARE these with you... in a two part scenario, for me, for one, so I can see that I can still have some what of a decent figure, even though all I have endured... and then of course with my age, etc that contributes to some weight issues, plus I had battled my weight all my entire life after being an overweight teenager... So I made these this morning, for a 2nd part to INSPIRE ALL OF YOU TO KNOW  YES there are times we look and feel like HELL! But then there are times like today for me, THAT I WAS ELATED TO KNOW that I could still put these on, and love the way they looked on me ) So remember to record these types of milestones in your own life... and share them to inspire others...

Tuesday, January 19, 2016

Pain News Network Articles and Information


NO "Epidemic" of Overdoses.... see the article below... great example and reasoning...


http://www.painnewsnetwork.org/stories/2015/6/12/there-is-no-epidemic-of-painkiller-overdoses#.Vp5PM_Y_Lh8.facebook=

here is another article from The Pain News Network talking about "urine tests"... and I agree they add 100's of dollars to a patients bill, and many of the times patients take them, due to metabolism, or NOT DOING the correct TEST (which I know for a fact had happened to a friend of mine) those "pee" tests can be NOT right! I usually wonder why the hell they bother giving me one... my pain pump gives me medications all the time, I take pain pills along with the medication in the pump, plus muscle relaxers, diazepam.... and so forth. I certainly do not NEED anything else, and would not dare even drink since now the pump is in (new new one and running) and I am almost back up to my dose before it had a motor stall. So, I know they check to make sure you are "taking" the medications... and of course if you have other substances that should NOT be in your system... the "reasons" somewhat make sense... BUT as I said, there are some of these medications that WILL NOT SHOW properly if they don't do a "special" test at the lab they are sent to. I can relate to the story in another article about the young woman who "fears" her appts at her pain doctor's. It used to be that way for me... and still is at times... we have such a horrible time getting the medication that goes into my pump.. and it is NOT expensive... that is the weird thing... it is actually much less expensive that most oral medications. But, you always go in with the fear that you won't get your medications, or something has changed (like now my pain doctor has a new rule you must have your medications in a "lock box" or safe" ) Which is a very good idea, if you have anyone else in your home... or have company over etc. But, I am not sure where a man standing in the waiting room got this idea, but he was asking about the lock box, and he was under the impression he needed to have his wife take a photo of her and the lock box and bring to the doctors office for her chart... I did NOT read it like that... but did understand the doctors are trying to get the CDC off their backs, so they TELL patients that, so patients are more aware of "protecting" their medications. NOT leaving them out for anyone else to get hold of... and keeping them in a safe place, especially as I said, if you have others in your home or people that visit, it is a good idea to lock your meds up. One time years back, I had a medication that was a nasal spray for migraines. I had picked up a brand new bottle from the pharmacy, but it was one of those HOT TX SUMMER days... and I guess I did it at lunch time and left it in my car by accident when I went back to work... Well the entire bottle, "siphoned" it's way out of the container, and into the other bottle it was in... plus it was such a tiny amount of liquid it has almost already vaporized by that evening when I got home... I had mortal HELL getting a replacement. I mean it was evident, when I took the bottle in and showed my doctor, then the pharmacist what had happened... but believe me, after that, I was much more careful about where I left my medications. I am so diligent about where my scripts go, that I take them to the pharmacy immediately, and if I don't need them that day, have them on hold for when I do... that way, I don't misplace it and have hell... no matter whether a pain medication or whatever type of medication it is... I try to turn those scripts in immediately. Plus my pain medications are from a specialty pharmacy... so I don't do anything but request my meds when they are due from my doctor, and they take care of the rest. There are times though that they "delay" getting the script to the pharmacy, and I am on pins and needles, if I happen to be running low of meds... so I totally relate to sometimes being "fearful" of seeing your pain specialist...


http://www.painnewsnetwork.org/stories?category=Opinion

Above is a link to another article "Why I am Afraid of going to my Pain Doctor Appts"


http://www.painnewsnetwork.org/stories/2015/9/20/cdc-opioid-guidelines-would-institutionalize-malpractice#at_pco=smlrebh-1.0&at_si=569e5754f5ee1daa&at_ab=per-2&at_pos=0&at_tot=5


Friday, January 15, 2016

Just a Quick Hello and more to come.... Wound Care appt(Last) hopefully today and my Rheumatologist appt. so a LONG DAY in DALLAS!

Just wanted to touch base and say "thank you" to ALL that commented on the CDC docket about the Pain Medications. Over 4,000 commented, and I had hoped for more, but I don't think that counts anyone who also "wrote" in, and I am sure some did send letters...

I am headed for Dallas to hopefully do the final visit to the Wound Care people for my abscesses. It got detained due to the pain pump surgery, and the holidays, so now I have that and my Rheumatologist appt both today... and I hate having to be gone to Dallas that long... even though one is mid=morning and the other early afternoon, it makes for a long day driving... especially when I am NOT headed to the Win-Star! :)

I hope the hell to be able to go soon. I am so sick and tired of either cleaning, cooking, being ill, having surgery, getting over surgery.... taking care of doctors stuff, insurance stuff.... and seeing doctors... I am ready for a break, even if for a day.... hopefully overnight....


Anyway, I wanted to stop in, and say that I am here, been somewhat busy and also under the weather this week a bit.... not sure other than I've been exhausted... but after running a high temp all weekend last weekend, I feel like that and everything else contributed to it all...

More over the weekend....

Wednesday, December 30, 2015

A Happy New year as we Welcome in 2016 - and New Pain pump is now in


WISHING YOU AND YOURS A VERY HAPPY, SAFE, HEALTHY AND PROSPEROUS NEW YEAR! MAY 2016 BRING PEACE, HOPE, FAITH, AND LOVE TO OUR NATION AND TO OUR WORLD!!! MY HOPE IS FOR ALL OF US WHO HAVE SUFFERED THROUGH SO MUCH FROM PAIN AND ILLNESSES, TO LOSS OF LOVED ONES, HOMES, MOTHER'S NATURE'S WRATH AT TIMES, AND MORE... MAY WE FIND A RENEWED PLACE IN OUR LIVES FOR THE COMING YEAR. LET'S PUT 2015 BEHIND AND LOOK FORWARD TO SOMETHING THAT SHALL BE SO MUCH BETTER, FULL AND OVERFLOWING WITH GOODNESS, AND LOVE...


RHIA


p.s. New Pain pump is new... surgery went well... I am hurting like hell today, but I am okay... have a call in to my doctor before he also is out for the holidays to check to see about my medications orally until I see him after the 1st of the year next week, when he will up the meds back closer to what I was used to....

Friday, December 18, 2015

Life, Pain, Lots of "Stuff" and living with "what we are given".....

Got Mom through the lumbar ESI injections early this morning in Dallas.... 3 different places, and hoping her back pain improves... our Pain Specialist seems to think they will help a good deal...

My "surgery" for the new pain pump (replacement) is on December 29th!!! One heck of a way to end 2015...

My severe pain, in my shoulder blades, down in my elbows, and even into my wrists and thumbs, NOT my other surgeries, thank goodness... BUT, I need another cervical neck disc replacement... I believe he said C-4 ?? is 80% COLLAPSED and has to be fixed...

Good news, the abscesses, one gone all the way, the other about 90% closed also... :)

Bad news the pain is horrible... and I still need the lumbar/sacral back surgery also... ALL of course postponed for at least 4 months now due to the cellulitis/abscesses on both top thighs....

Got the puppy, got his 2nd boosters... and got my hair cut, that was yesterday! I love it, or I will in about a week, once it grows out just a tiny bit... then it is really better, than when 1st cut... and it is SHORT!

Holidays, well suck... my kids will be not around... busy, plus my daughter 8 hours away or so...

And I've had an EXTREMELY ROUGH WEEK, EMOTIONALLY... I AM SURE DUE TO MANY THINGS, AND THE HOLIDAYS, after losing my Tazzy who was an Xmas present 12 or so years ago... plus Jim not here and in Seattle...

Just so much going on, and by the time I "think" I may have time to write or do something else different, something else happens, like I had to put a new flapper in Mom's toliet this week, in among everything else....

Seen some awesome Christmas Movies, I love Hallmark Channel... and other movies as well... the "Coat of Many Colors" about Dolly Parton's young years, was amazing!

So, here is a new pic of me....

 Happy Holidays to All - May we have Peace, Comfort, Joy, Hope and Faith throughout the rest of 2015 and into 2016 - to Eternity!







Wednesday, November 18, 2015

Winter Weather and the Effects (Negative) on Bones, Joints, Pain, and Chronic Pain - Holidays, stress, and coping when Chronic Pain andor Illness Abound

Morning All! I thank each of you for "sticking" around, even though I have been somewhat absent over the past several days. I am still dealing with the "wounds" on both thighs, (abscesses) and finally see a "wound care specialist" tomorrow on Thursday. It means a drive to Dallas, but thankfully the weather has turned around, and we are supposed to have a few sunny days! I certainly hope so! The cold, damp, rainy weather does more to some than dampen their spirits, it can cause any type of bone, joint, arthritic, or chronic pain problem to escalate horrifically.

I have been dealing with of course NOT having my internal pain pump, which is already bad enough. Even with strong pain medication orally, they can't compete with the medication given from the pump. Then you add on top of that, all of the pain, stiffness and swelling from the Lupus, RA, other arthritic issues, and joint problems, and believe me, it causes a world of hurt, over and above what pain I already have.

I've read several articles lately on chronic pain. For the most part, I've been "aware" of just how badly weather has an effect on pain since I was 17 years old. Long before doctors would say "yes" definitely. I first noticed it with migraines. I was plagued with those for all of my adult life. In fact, they were much worse, led to me losing several jobs, because at the time there was no real answer for medications, for even why I had them, and facts that we now know about all types of migraines, were just not around back then. I also began to have joint problems, that even needed surgery by the time I was 21. After a severe knee injury that led to me having extensive knee surgery at the age of 15, and then another surgery on that knee when I was 21, from there I was also plagued with many problems with joints. I had several arthroscopic joint surgeries well before I was diagnosed with RA and Lupus.

I had an elbow, shoulder, and then another shoulder, wrist, and really needed another elbow surgery by the time I was 40. From there both knees has surgery several times, before finally having both of them replaced in 2007. In fact in 2007, that one year I went through 7 or 8 surgeries, related all to joints. Even the right shoulder, finally led to a total "reverse" shoulder surgery in 2011, and then cervical neck surgery, plus I face a lumbar/sacral surgery, that has been put off by other health problems.

But, I vividly remember how much worse my migraines, and then later joints would hurt when we had a huge weather change. I was in my doctors office many more times, or even in the emergency room with migraines when the weather "acted out".... a high humidity, very stormy weather, a drastic change from cold to hot, or hot to cold, sent me straight into more pain than I could deal with. At that time, there was little "medical proof" about the effects weather had on these types of health problems, but I cannot recall how many conversations I had with all of my doctors how about the weather had a dramatic effect on the pain level I would have.

Now, after many years, it has been proven with studies that it certainly does have a dramatic effect on the body, especially chronic pain and/or chronic illnesses. It is no different than when I had my 1st knee replacement, there are times, that "knee" hurts so badly, I would swear I never had surgery yet on it... but just like those who lose a limb and have "phantom limb pain" so is also true with those who have joint replacements. That is true for me with both knees, and my shoulder. There are times, especially during severe weather, that they hurt as they did before the replacements.

Holidays are upon us, and with the hundreds of thousands of us that suffer each and every day from some type of chronic illness, and/or chronic pain, holidays can prove to have a "mixed blessing"... when you have an illness such as an autoimmune illness, that already causes fatigue, and all types of symptoms, having a busy holiday schedule can definitely contribute to feeling even more fatigued, more exhausted, and the added stress often leads many of us to having bad flares, and even being hospitalized.

Holidays usually involve family. Like myself, with some of my family hours and hours away, that is sometimes the only time I get to see my daughter, and her family. So, we spend a great deal more time getting ready for family that is far off, or doing holiday baking, parties, and putting up decorations, planning meals, running and doing shopping, and all of the very things that can make holidays wonderful, but also make chronic illnesses and pain horrible in the process. We tend to not sleep as well, not eat as well, not take care of ourselves as well, and do way too many hours of overdoing it, thus leading to us feeling even worse than usual.

But, how do we find a "balance" when such times are upon us? That is a very difficult and almost at times impossible task... you can defer making a huge dinner, to going out to eat, you can order presents online, rather than running around 4 cities to find the right gifts. If you have a huge home, or are expecting a group to stay several days, rather than trying to do all of the cleaning and so forth, you could hire someone, or recruit others to help with those things. Or you could offer to help with a hotel room, or ask family well ahead of time if they would consider spending part of the time at your home, and then a day or two in a hotel. As difficult as that may seem, sometimes it is best for you and them. If you are too exhausted and overwrought in "taking care" of family and friends, then you are not able to "be there" in spirit and health to visit and enjoy the time together. With my home being so small, I just simply do not have the space for my 3 Grandkids, my daughter and her husband. When the kids were small they stayed a couple of times. But, after the kids getting older, and needing more space, a 2nd bathroom, and so on, they decided staying in a local motel here in our smI've made some adjustmall town was so much simpler for them and everyone. I realize that some may not have the finances to allow that, and other plans must be made. Yet, if you can at least take a portion of that off your shoulders, all can enjoy the time much better usually.

I know I have cooked many, many holiday dinners, all myself. I used to decorate every room, clean every speck of the home myself, and have all in perfection. But, as I began to have health problems, my "body" just became rivaled with fatigue, pain, and problems that do not allow me to do nearly as much as I used to. It is very difficult to contend with, and I surely know the guilt I feel even till this day about not being able to do what I used to... but you must accept those facts, and find new ways to enjoy family, take the burden off of everyone, so stress does not plague your enjoyment together.


I've made some "adjustments" already for the holidays for this year. Rather than try to get out of huge tree, and pull out all of the boxes in the attic with decorations, I "settled" for a smaller tree, that I put on my beautiful round table in the living room. I had many of my special ornaments and decorations in my camphor wood chest, so they were easy to get to. I took all of those out, and had plenty for the tree, plus used some of the other things to decorate the rest of the living room, as well as some in my office. No, it is not the huge tree I loved so much. But, it is a 4 foot tree. By the time I got the lights, and all of the special ornaments on it, and surrounded it by a few treasures around the house, it is simply beautiful. Plus this is the 1st time I can remember getting my tree up well before December 1st. I usually wait till the first week of December to put it up. But, I went ahead and bought the tree, and since I had it, I went ahead and spent a bit of time a couple of days finding my other stuff, and then decided to go ahead and put it all together. In fact, I just found my crystal candle holders, and got them all out and cleaned them, so I could get the candles in them with my candle rings. All of it things I had around the house. I need to buy a few more tapered candles, but I had 4, so that works until I am out sometimes later today to pick up a few more. Anyway, I have enjoyed the decorating this year almost more than some others. For one, because it is "different" but in a good way. For 2 I have not felt pressured to get it done, and have just taken my time, finding things to use from around my home. Even the tree skirt. I had some "quilted" white cotton, a piece I had in my sewing items. It is just big enough to make a perfect "tree skirt" and looks like snow, with the quilting and being white. So, I also have not spent a fortune to decorate. I did buy the new smaller tree, but other than that, I did buy a set of smaller lights yet even they were only like $2.00 at one of the local dollar stores, so I did not have to go into debt to have a wonderful tree and decor for myself and Bub's.

We are waiting to get our wonderful Christmas "miracle"! My hopes are that by Christmas we have a new fur-baby for our present this year! It seems perfect since Tazz, my Pug, who passed away a couple of months ago, was a Christmas present back in Seattle! She would be turning about 14 years old this month, around this time in fact! IT seems like yesterday we went to pick her out. I will never forget how she "bounced" up on the sofa and came running to me! There were still several brothers and sisters to pick from, but they put her up on the sofa, and she ran straight to my arms! I knew that instant she was my special gift! In fact, she is in her little locked cedar chest, with a prominent place under my Christmas tree right now. She shall always be my "greatest gift" as far as human gifts go... she lit up the room every time I walked in. But, Bub's and I have I think bonded even more since she passed away. We always had a "bond" but after both of us suffering through the loss of her, we seemed to grow even closer to one another. He is even more protective of me than he was, and he was always very watchful over me. So, I know both of us will be so thrilled to have a new addition to our home. It has not quite been "home" without Tazzy. Even though no other pup will ever take her place in my heart, I know she is happy, playing and will forevermore be a pup, and someday she will see me and run into my arms again, just like the very 1st time we saw each other! I painted her toenails that morning she passed away. The evening I picked her out, the lady painted a back toenail red, so I would know she was mine. So, I sent her to heaven with red toenails. I will know her without that, but I shall truly be so warmed to the core to see her run up and jump into my arms someday when I join her and my family members and friends in heaven.

Between the illnesses, the pain pump going out, the abscesses on each thigh, losing the trial from the accident, being "single" again without ever even expecting it, losing Tazzy so suddenly within 24 hours as I did, and trying to deal with Mom and her also having health issues, it seems 2015 has been another one of those very, very extremely tough years. I hope and pray that faith will lead me and my family, into a new, less stressed, better health time in 2016!

May somehow our nation and our world find peace and harmony!

And may each of us know and understand the true meaning of the Spirit of the Holiday Season...

With my love, respect, and may you find peace in your heart, and a well health filled 2016 also!

Sunday, November 15, 2015

Medicare Advantage Plans, Kidney Stones, Pain, and "pain" from life and all we know... trying to find that positive light admist all the negative's....

Thank you so much Tracie L Carlson and Lourdes Villegas-Anaya !!!!   I so appreciate the kind words, and giving me the courage to try and move past all of the nightmare's life can pitch at us, in any given moment. None of us are "immune" to life's way of trying to take us down further each time things happen. Especially when SO MANY happen all at ONCE! I also know that I am NOT the only person on this Earth with a world of problems, and a universe of pain and suffering. I have tried to find a way back to the "light" in my life... although not an easy task. In fact, you are both correct, a great deal of putting up the tree so early, was so that myself and Bub's can find some warmth and spirit since this nation and world seem to be so totally cold hearted and full of so much indignation, terror, and things we usually imagine to only happen far away from us. Yet, that is not true. Whether we are suffering from illnesses and pain, or heart break from those we thought never would cause it, or the loss of someone so special, like Tazz, and my Dad who passed away 10 years ago, and I as I say the "loss" of "oneself" which when health deteriorates so badly, and chronically, it is so very easy to "lose" who you thought you were... we all change and grow, just a fact of age, wisdom (for some), and the way our lives are meant to be... but when you feel as if you have lost your very core of spirit, you inner most power, your ability to see the world with different eyes, trying to not become bitter, and full of loathing, all too often of your own body, and mind.. the fight is not a simple one, nor is being alone to deal with it ever easy either. Even now for me, being in a room filled with people I feel totally alone, and misunderstood. Of course with Tazzy being a Christmas present and was born about the time she passed away 14 years ago, has made the loss of my one fur-kid even more painful. Thank goodness Bub's seems to be feeling better, and after getting his rabies vaccine and getting those terribly long nails trimmed, and without having to muzzle him, :):) I think his feet maybe a bit sore... now he cries for me to help him on the sofa. But, I also realized that he is almost 6 years old! My papers from the Vet said he was 5 years and 9 months old... which I knew he was pretty close to being between 5 and 6 but time has flown by so fast. I look at the pics of him, when I got him home, he was so little, he had a place on my desk he laid... and Tazz the same way, she was so tiny, I could hold her in one hand when we first brought her home... guess that is why that seems like yesterday, and how hard it has been for me to except her passing away.... but I found her and Bub's ornaments, I had bought them over the past 4 or 5 years in the chest yesterday, and they hang on the tree along with Tazzy underneath it... she can too "see" the warmth and love she still has from her home..... And the Christmas Letter... yes I am sure I will find something positive to say, but in that, I will also have to tell the family and friends about all that has happened in the past year. That is why I write the letter, to catch up to family, we do not get to see or talk with very often. So, those letters remain a lifeline from our home to theirs, and from their home to ours. I still have so much to get done... I have to make a decision about my insurance and Mom's - and that is not an easy choice... I came to find out an interesting fact about Medicare Advantage Plans - OUR doctors are NOT the ones who "take" or do not take these types of plans at all. In fact, they have no say so in it.... ONLY the "insurance" companies make that choice... They "choose" whom they will be an in-network provider, and the physicians cannot say no, but they can't have the plans either, unless the insurance companies themselves "choose" them... Now I understand why my hospital is not on the policy we have now, nor some other providers. Come to find out they all work that way... I know I was totally dismayed that NO HOSPITAL within 40 miles of us took the insurance we currently have... that seemed so ridiculous! Well, NOT the hospital's fault... the insurance makes that decision!!!! Now this is mainly for Medicare Advantage Plans specifically, and I do not think it effects like Medi-Gap policies and so forth... thus just because online the companies may tell us that "this doctor" will be covered, by Jan 1st, they can change their minds and NOT cover a doctor we need to see... Talk about a mixed up mess!!! Our dear government at work... I can guarantee you, THE CONGRESS has a huge say over these plans specifically, and they make it as hard as possible, since many of us on them, are below the age of 65, because we are on disability, not "retirement" age yet... Anyway, talk about one messed up situation.... I was all set to go back to Humana for 2016, then I noticed our PCP was not listed as a network provider... thus I asked Thursday while I was there, and come to find out no, but it is because the "insurance" is not "allowing" them to be a in-network provider, not that they do not want to!!! It made me so furious... Humana COVERS our hospitals and so forth BUT not my PCP! And I have no guarantee after Jan 1st, they will "cover" the others they say they will online... it is a huge mess... and for me to try and get a "Medi-gap" policy would be well over 500.00 a MONTH or more... so it is no "win-win" for anyone... except the insurance companies themselves... and "United HealthCare" Secure Horizons SPONSORED BY AARP!!! is the worst! I have had nothing but problems with them all year long, plus as I said they do not cover our local hospital, my Rheumatologist, our Urgent Care Center, which seems totally stupid, and so forth.... anyway, so that is just one more thorn in my side to deal with.... along with all of the rest... again thanks so much, each of you... I did not make it to church again this morning, but I tried to go see Mom yesterday, and by the time I was in the car, I got sick to my stomach, and had to come back in the house, and let her know there was no way I felt like going over... same way today... my stomach is still "not right" but I am in so much pain, again I have to wonder if I don't have a kidney stone... the past two mornings, around 3AM, I awake to horrible and severe lower back, lower abdominal, pain... and down the fronts of my legs... which is usually how I know it is kidney stones... the leg pain, but down my front thighs.,,

Sunday, October 25, 2015

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....

Friday, March 13, 2015

Changing of The "Plans"... asking for positive thoughts....

Please keep "positive" thoughts my way as I try to delve into my 3rd book. I've been working on it off and on for a long while, and really began to watch it somewhat take "shape" after the first of 2015. But, I was also trying to juggle writing it, all of the errands, bills, groceries, shopping, house cleaning, cooking... and of course that list goes on and on... along with all of my activist, advocacy, Ambassador, and volunteer work. Now, I have tried to come up with more ways to make some of the daily "drum" of life, play a different tune for me. I've re-organized (or I trying to) how I deal with the daily things that all of us must do, and also be loyal to my own blog and book... PLUS remain a huge VOICE as  I feel I must in the realms of my advocacy, activism, volunteer, and ambassador work as well. I never want to "negate" how critical I feel it is to give true "voice" to those out there with these often daily, chronic illnesses, pain, and make sure I am doing my part to help in that also. So, as I try to "coordinate" more, "combine tasks more"... and give myself plenty of "quality time" to write. I can't write 10 sentences, then have to get up, leave, run errands, go to the market, do laundry, and 4 hours come back and pick up where I left off... my mind just does not work that way anymore... with all of the brain fog, as well as stress, and the "business" of life, I have to allow myself to "tune out" some of those things, and let go of some of the stuff I tend to lay way too much priority on, that I need not. I don't have to have every dish, every towel, every floor, every inch of my car.... all in "perfection" .... some of that type "A" personality, must go... I've had to face that my mind just won't and cannot deal with way too many "irons in the fire" at once. When I do that, then I am more concerned about "doing" other "stuff", then do the "stuff" I WANT and need to do... LOL... no that does not mean I am going to have bare cupboards, do no cooking, never clean, or do laundry, not do all of the daily items, but I can do them in a bit different manner, thus freeing a "chunk" of time up to write, to do my advocacy work, to work on my blog... and so forth... thus that is my plan, and goal... of course like all great ideas, that may not come to fruition either... but I can try... plus I've tended to "neglect" the fact that I am in a GREAT DEAL MORE PAIN, than I wanted to admit to myself and my doctor. There is something going on, whether related to the RA, Lupus, my hips, osteoporosis... or what ever... that is causing me a world of hurt, that was under control for a long while. So, that may mean reconsidering my "autoimmune medications"... and also opting for more medication coming to me from my pain pump, in another small increment. I had it put in around October 2010... and for the 1st year, we "adjusted" it almost monthly... then we got it pretty well working as well as it was going to.... and 2 years ago, I went through another spell, where I was in "intractable" pain... again lower back, hips, legs... we adjusted the medication then, and there has not been a change since that time. So, I did tell my specialist last time he refilled my pump, that I was "jumping up" on the scale of pain... and he did "up" it a tiny bit... which is always how they have to handle it... but even with that, I am still in too much daily pain... and even though I and everyone knows we are NEVER completely "free" of pain... it just does not happen... so... I am going to ask him next week - Jim has an appt with them on Monday, about coming back in and having him "Up' the dose again. From there, I will be probably working with my Rheumatologist on trying a different "combination" of meds for the RA/Lupus.... but I really don't see him until May... yet I can email him, and sometimes he makes changes in between visits, since he is so swamped with research, teaching and seeing patients... that our visits are usually far between... Anyway... that is where I am at this moment... and I shall put one foot in front of the other... (by the way I have MY BOTTOM DENTURES FINISHED A WEEK FROM TODAY!!!!!!)))))) THAT WILL BE A HUGE HELP ALSO.... Thanks all... Rhia Steele​

Thursday, January 23, 2014

A Bit Out of Commission - Surgery and home recuperating

Hi All,

After double hernia surgeries yesterday, I am home, a bit in pain, and sore, and up and down, trying to recuperate. :)

I appreciate all of the well wishes and prayers... and bear with me as I shall be hopefully more up and around in about 2 or 3 days.

I have huge plans for my blog, and for helping with the Systemically Connected Blog for the IFAA!!! I am so looking forward to helping Lorna!

I also loved the "Blog Leaders" and all of the interviews we had last week! That was so much fun! I am getting each of you up on my "blog list" here. I have some already, and as soon as I am a bit more able to sit and think ( I am a bit still foggy from the anesthesia.... I will get everyone's listed!!!


I look forward to Kirsten and I getting to meet in D.C.!!! I got my flight booked and my room booked! Now just figuring out how to take my entire closet!!!! LOL!!!

More to come... please keep comments coming... I would LOVE to know what YOU want to see....:) Rhia

Friday, November 22, 2013

Technology - In Every Way & the Miraculous Way the Medical World Uses It

Man Kind, Medicine, and Technology...



To Start Off with a bit of an update of my turmoil the past couple of days and a walk through how technology is revolutionizing our Medical World... Well my new I-Mac is on it's way. I decided to forego the Macbook Pro or Macbook Air(as cool as they are), even though I really wanted a laptop. But, I got to thinking about it, and I have my I-Pad! It works as well as a laptop, and is lighter and smaller to carry around. So, even if I were to travel, that would suit my needs, or our needs if Jim goes and needs to be able to watch the client's and their servers. So, I have a 22 inch I-Mac that I wished the heck would hurry up and get here. I was so totally bummed out yesterday. I had been trying to work on my old laptop, along with an external monitor like I did before. This is a I-Book G4, that was bought about 2004 or so, for me. When I was doing web design work, and helping with the business, I needed a new computer and they bought this for me. It only has a 13 inch screen and thus the eternal monitor works to have a larger amount of "real estate" to work on. But, at that time this was one of the faster on the market! In fact Jim and his partner at the time, Mark was almost jealous because mine was faster than theirs. :) But, you don't realize how quickly technology changes until you have to step back "in time" to a computer that is even 7 years old. I know my I-Mac that got zapped two days ago, will seem like it was as slow as a snail compared to my new one on the way. but, being on this laptop has made me appreciate that technology has made so many advances in a time when all kinds of things are happening at a lightening pace. If I think back just a few years ago, I recall no cell phones. In fact the first one I had with the big "bag phone" by AT and T. Man and the "minutes" were expensive. When you think about technology and the medical world, wow, how many things have changed dramatically in a very short period of time. In my lifetime, I've watched knee surgery go from a very huge scar left from the surgery, traction and staying in the hospital for seven days, to arthroscopic surgery, with three tiny little scars and going home the same day after being operated on. Even our MRI, CT, PET scans, mammograms, bone density tests and just take a "run" through in your mind of all of these amazing types of tests that have only been here a short period of time. When I was about 20, I recall have to have a "brain scan". I was taken into the hospital, upstairs at our old hospital here in my home town, before they built our new facility, to a room where this huge machine took a very long time to "scan" my head. It seemed like hours I had to lay there very still, and I recall the imagines, and thinking then just how "out of this world" that seemed. Well in these times, we have advance so far in those realms, that our scans now days can show minute changes in skin, in organs, in our spines, joints, all of our bodies, and do so instantly. Even X-rays. There is no wait in knowing the outcome of an X-ray. Yo know the results usually before you even walk out into the world again. Advances in lab work, in equipment in our Emergency Rooms (save more lives than ever due to the amazing technology), having things like "Care Flight" available, nurses and doctors having better educations, better skills, using computers now for everything from our medical records (enabling doctors to immediately share a patients medical information), to telemetry. We can have kidney stones literally "blasted" to pieces rather than having to undergo being literally "cut almost have in two" as it was not long ago, when my uncle had stones several times. The old fashioned "basket" would not collect them, thus opening up the body was the only way to get them. Surgeries of all types and those changes. Just recently the "De Vinci" surgical computerized system has been introduced. That computer can almost do the surgery in itself. It helps physicians be able to do detailed procedures that once were impossible to do without cutting the body open and exposing the areas that need to be operated on. From pace makers, to internal pain pumps and stimulators. From "open" heart split your breast bone and wire you back to close that incision up to going through a tub inserted into the major groin artery along with a tiny camera saves hundreds of thousands of the once open heart surgeries that were once not long ago a necessity for any type of heart ailment just about. In the complicated world of "autoimmune illnesses" the advancement of tests, medications, and the knowledge now out there has grown by leaps and bounds. I realize that all of us, as patients, feel and know there is NO MUCH MORE work to do about these illnesses and the devastation and have the reek u[on every aspect of our bodies, the physical, our minds, the mental, and the emotional costs are still extremely high. Advancement just in the communication about these illnesses needs to be ramped up by a huge percentage. With early, and I mean extremely early ways to find evidence of these illnesses, we could not only slow down, or put them into remission but actually STOP these horrid illnesses before they ever have a chance to cause any type of damage. Again we have advanced in a huge way comparatively to just a few years ago. The ability to have researchers all around be able to collaborate data from clinical trials. The clinical trials that can now test new advances in medications, that just a few years ago did not dream of having the majority of them or the use of many medications we do have and them being able to be used to treat autoimmune arthritic diseases is saving lives each day. Having "Lupus" even when I was about 35 years old, first of all was a "death sentence basically. LIttle was known about the disease or what it did throughout the body. But, it was known that is was as serious as cancer, if not more. Don't get me wrong, these autoimmune diseases can still be "deadly" and are just as serious, if not more today. But, the difference is the way we are beginning to have so much more knowledge, more doctors that are studying these puzzling illnesses. With our vast changes in the way the world communicates often with the click of a "mouse", moves information to all the world, that once had to be shared by "snail" mail, or written in an article, yet the magazine article may not be seen for a month or more. Now, as soon as the news is out, more often than not, we know all about it via the internet. We are living more years as a whole now. That average age of people has risen dramatically. So, that means not only have we made many advances in all walks of life, but we also have to continue to move forward flowing down that river of human compassion, understanding and knowledge all over the world. WE are no longer just a "nation". We are no longer separated by oceans of water, for we are a united world, that in the blink of an eye, you can be speaking to someone overseas with a few key strokes, the touch of a phone number, or even see one another and speak over the internet on a messenger. Next time you are on Facebook making a post to "friends". Think about where those "friends" are. Whether in another town, another state, or another country, instantaneously you are "speaking" to them, with no "lag time". Each day our world becomes closer together. Each day we should never take that for granted, for it as mind boggling as it is, we even reached to out other planets, to find somewhere out there in the endless vastness of space to find if "life" exists there, and how that may sustain us someday.

Tuesday, January 11, 2011

It's been awhile! I am here and hopefully back

Well, I never thought it would be so long before I got to my blog again, that I might not be able to find it! alas, here it is the New Year, ringing in the pain pump now in place, and the medication almost where it needs to be dosage wise. Of course I realize I will never be completely free of pain. But, compared to oral pills, and all else endured for far too many years for the chronic illnesses and pain, I would highly suggest a pain pump to anyone who was in my place, or many are already worse. It is quite a lengthy process to just get to the place of having a "trial" time. Fortunately for me, I went in thinking I was going in for my trial, but due to my doctor already having known me for over 5 years, treating me, and knowing my total history, they already had the pump approved, and at the hospital in November a couple of weeks before Thanksgiving. I made my decision on the gurney while waiting for the OR room to be set up. Actually, we had figured as much due to what the nurses had told me while they prepared me for the surgery. Sure enough my personal representative from Medtronic was there to get me ready as far as understanding the entire situation. My doctor was more than ready to go right on and put it in, rather than have to do a trial, then in a day or two, re-admit me, and then do the surgery. So, since I was already ready to get this thing started, as the song goes, I went in and came out with yet another hunk of metal in my body. This one hopefully like the knee replacements that shall give me tremendous relief from the far too many years of chronic, daily pain. The kind of pain that has ruled over my life for at least 15 years, and that I have tried everything known to man, woman and alien to help me. The list is endless of doctors, therapies, medications, physical therapy, magnets, rubs, TENS units, injections in my various joints and back, way too many CT and MRI scans and enough Xrays that I should have an eternal green glow at night!
 The number of doctors I have seen was too large to count on fingers and toes! From over the counter remedies, to anti-seizure medications, to NSAIDS, and narcotics... the list of pills are endless also.The day I shall always feel lives in infamy for me, is the day I was visiting my current pain specialist and his words were "time to think about a pain pump!" I almost hugged him! Five years ago, when I first went to him, it was because my still PCP had already suggested highly it was more than time for a pain pump for me.

I was signing papers, watching DVD's, reading everything online I could find, and just trying to hurry up the process. It took of course getting insurance approval, then several visits of talking about it, telling me about the first part, which was a psyche evaluation, that was truly more due to insurance, than my doctor. But, I had it done, and was ready for the next step. Well, by the time his nurse got all done with my insurance, they had basically said there was no need for a trial on me, and go ahead!

Now I had a couple of small setbacks, the first of which was one of the horrible "spinal" headaches that is caused by having a lumbar puncture not seal up as it should, thus the loss of spinal fluid messes up the balance, and the headache in sues.  Of course I developed the damned thing on the Saturday, after coming home on Friday from the hospital! We basically knew the issue, and after calling my doctor, we did have to make a trip to the ER to get my severe nausea and vomiting stopped and then I was told to drink as much caffeine as possible. For some strange reason for many, a spinal headache can be stopped with enough caffeine. I went back to Dallas the following Tuesday, still with the headache, but it was somewhat better than the weekend. They scheduled me for what is called a "blood patch" to seal it off, but said if I continued to get better, and was careful, I may not even need the patch. Thus true, I did everything I was told, and it sealed on its own. A couple of weeks later, I began to feel a knot coming up on my back by my spine, where the incision is for the catheter that was put in to the pump and then attached into my spine. come to find out, it is a fluid buildup that does happen, and it is called a seroma. Luckily, it will finally go away on its own since it stopped growing and began showing signs of going down. We did not want to take a chance to drain it and cause a possible infection.

Thus even with those two minor issues, and then the weekly trips to Dallas to my pain specialist for weeks and weeks, we have finally about gotten my dosage of medication in the pump where it needs to be.

I went in yesterday, and he refilled it, with a higher concentration of medication, which means not having to go as often for it to be refilled! I have already seen so much getting better... no more side effects from the oral medications, it is a relief not to worry about those pills, making sure I take them right, making sure I fill them when i needed to and so forth. I was a little bent out of shape because the pump shows a little with my shirt off. But, that I was told would happen due to my slender waist. And I surely am not going to put on any weight, so it will just have to stay showing and turn into a conversation starte...LOL, probably.
I am thrilled to be back online, and hope that with this pump life gets a great deal better this year. I still have hurdles to jump, but this year one huge one I have cleared hopefully for a long time to come.