This too Shall Pass

                                                    I really wanted to start this blog on my new computer and program, bux and falkor, on an upbeat note. However I've been having a hard time thinking of something upbeat talk about. It seems my entire support system is crumbling around me. But I did think of something very positive

I have the world's best PCA. It is my 22-year-old son. Now of course he can't really help me shower and I have to have a few other people help me with that one but that's okay, he more than makes up for it. He is a full-time college students and  in a very small and difficult College in St. Paul Minnesota. Zev has been putting in 21 hours a week, now he's putting in 40. As soon as I find another PCA he'll cut back to about 30-25 hours a week. My son Zev has been amazingly supportive, I know it cannot be easy on him trying to care for his mother when he's only 22 and I am only 53. On top of that of course is personal issues, and boundaries sometimes getting crossed, but we've gotten pretty good at stopping each other when we get to those boundaries. I can't tell you how many times in the last six months he's had to pick me up and literally put me in bed. He also has me on this wonderful workout routine, I have never been sedentary I've always walked even within two hours of surgery. But the last six months that this pain clinic has pretty much Me bedridden. So he's trying to get me up and going again and I am more than grateful. He started me at 5 min. at .5 mi./h two weeks later, I am up to 9 to 10 min. at .9 and for part of that time were doing a hill type effect ,okay so it's only .1 but it's a start. He takes me to doctors appointments, boy does he hate that. He cleans the house, does my laundry, cooks food. things I did for him for about 15=20 years. It can be kind of hard at times, knowing that this is not the way it should be. But this is the way it is and I am so so grateful for all his support,help, love and understanding. This must be really hard for him. And to top it all off, this ridiculous government has decided that family members should only receive 80% of what the stranger would get. When a family member gives you 150% of their time and energy, and a stranger walks away after a few weeks. And then after all of that we were with the PCA company that did not tell us until the last month that he only had eight hours a week for the rest of that month. And that's not the first time they've done it to me. So we switched companies,  this one I had been with for 10 years so I decided after the other company was so bad it was time to switch back to the really good one. Turns out they're not so good anymore they just said it took my doctor a month and a half to return the order for a PCA. I know for a fact that cannot be true by doctors very good at responding to requests, he also knows how badly I need help.
So what I want to say in this blog, is how grateful I am to my son for being there for me when I know it can't be easy, and he would probably have been happier staying at the University library checking out book's. But I am also grateful to my daughter for all the support she gives me when she can. And my husband who has been standing up to doctors for me lately, it's not in his nature to do that, so I know it can't be easy for him.
Thank you to everyone, firstly my family, secondly my friends, and yes Face book as hokey as that might be,in  being there and helping me through this nightmare that society has put out for me to struggle against. Sure would be nice if they would be there for me instead of making everything a fight, but that's the way it is in society today ,there is no heart left, the person is always the lowest denominator. Except when it comes to family then we are the highest denominator. I love you all, I know it's not easy, I am grateful from the bottom of my heart.PS, that was fun, it took me 15 min. instead of two hours to do this blog so I guess I want to say thank you to Bux and falkor.

                                              Well here we go, on a new adventure. The new box named BUX and of course falkor my ever faithful Dragon. This is very exciting really I've never had a new computer or program that I can speak to the old type everything I say. Now what do I say, this is much too happy and occasion to bitch about all the things that are going on, or I need a break, and on and on and on. So instead I'll tell you how my son is such a great PCA. He is determined to get me up and moving again, and I am in no way opposed to that. I'm ever spent too much time laying in bed and unfortunately the last six months that was pretty much all I could do. Anyways he's got me on this great program, or I do the treadmill every day, that darn thing scares me to death and I  know one day I'm just going to go right with it .lol. Hasn't happened yet and I pray it never does. However we did start at .5 and in two weeks were up to one and that is in speed. time wise I have gone from 5 min. and then now up at 10 min. He didn't think I could do it that fast, but when you've had 12 surgeries you really do learn how to pull together all your strengths and just do what needs to be done. My problem is I tend to just do it overboard. If 9 min. feels good why stop at 10 but every time I overdo it I hurt again. So I can have much much the thankful for. He really has turned out to be a wonderful PCA and I will miss him when he finds a real job in the real world. The college is about over, and he is now a man, a job that entails taking care of mama is just a bit too much. But onward and upward he will go, and I am so proud of him. In this past year, although it's been a struggle at times I don't know what I would've done without him. And I think this is a very good blog for falkor Bux and me.

THIS TOO SHALL PASS

                                              OK so one more on this old box.....I would like to tell you just a bit about a group i run on face book.  even though it is a group for chronic pain, there are as many reasons people are there in pain, as there are people!  I HAVE NEVER HEARD OF A MEDICAL CONDITION CALLED CHRONIC PAIN! At a time where we see specialists for every condition, why have we all been thrown together in a group called chronic pain?  When we all have different physical conditions causing pain, bringing us to the pain group, why are we all being treated as if pain was our problem?   Pain means there is something wrong going on inside.    I suffer from a bad back, and all the complications that causes.  Others have Charis and all the side effects of that. There are people with Tardive dyskinesia, these are but a few examples of our conditions. Not one of these ailments is called chronic pain! So why,i again ask are we being treated for chronic pain? SOMETHING THAT DOES NOT EXIST! When we all clearly need different treatments to effectively treat that pain. So in this day and age when we are sent to a specialist for every little thing, why is pain treated as one disease, with one cure? No wonder so many of us suffer so, no one is treating the pain that we as individuals have, according to our condition. We are a group of chronic pain suffers, instead of individuals with diseases that cause pain. 

THIS TOO SHALL PASS

                                                       THE LAST TIME I WRITE ON THIS on  the OLDDDDDDDDD computer... the new one comes tomorrow!!!       So for the last time on the junk box...The role women play in almost every culture is that of the head of the home, hers is to turn a house into a home. She is the one that sets the tone in the house. If it is a place of fear, from misbehavoir or shame, guilt from not doing as you are asked. My favorite is the authoritarian, " as long as you are in my house..." , ususally a place without trust  and a lot of punishent.  This is the environment in which I was raised. I always felt less than human, as if I was something broken..needing to be fixed. Of course they where the only ones who could tell what was best for you, never seeing the children as entities unto themselves.  These, I precieve as a way of making the home into a place to be feard.        Then there are the ways of making the house into a home of support, confidence, respect and love. I choose the latter, always trusting my children. telling them there is no shame in making mistakes, which means we must learn from them, and try really hard not to repeat them." I am sorry "only counts when it means you are going to do your best not to repeat that action. slip ups happen all the time, just means owning up. Honesty and trust are the corner stone of such an envionment. Love and honor are the end results. My home had one rule....i  get a hug when they come in, before the fridge is opened. I saw my self as a guide, to help each member of the home be the best at who they are. I was and still want to be someone to supports who ever comes throgh our door, being the person who will  always love, respect  and honor you.  this is too all the homemakers....a fullfiling role which done properly parovides everyone a loving atmoshpher, in which to grow into the best you possible.

                                  I don't think i have ever been so humiliated in my life. I showed up to
 see my primary a week early, pissed but it could be worse. Some secretary decided it was her job to play hero, and "save" me. I did spend a few min talking to her, she took all the pieces of my story put them together in a different order and concluded with ..I am go in to kill myself....i did mention that 5 days earlier when i woke and the blood sugar was 35 and for a moment thought about going back to sleep, that is a story for another day, but of course after a second I was stuffing chocolates in my mouth. ok..over, will the doc see me or not? suddenly I am in a locked room with a nurse, being told I had to wait for transport to the phyc. hospital, what the........who said something??? what was said??  I was not allowed to know. Then begins the horridly painful journey to hospital on a gurney, OMG.. it hope no one ever has to feel that back braking pain! ......I see a nurse......wait 5 hours.....2 min. with a doc. I have never seen before...he asked, did you say xyz ,i said no he gives me a few pain meds. at least it brought the pain down a bit.  I WAS SENT HOME!!! THANK  G-D.                    YOU WOULD THINK MY DOCTOR COULD HAVE AT LEAST ASKED ME!!!~~~~~~~~~~~~HOW EMBARRASSING~~~~~~and painful, ooo, do i hurt.  I know tomorrow will be worse. I must leave something for tomorrow anyway,LOL                                                                                                                                                                                

THIS TOO SHALL PASS

                                

                                                                                    I think we are all in a lot of trouble....these new laws,giving us DEA numbers,because we need medication that is now classified the same as crack , what are the consequences of that? when i try to get a passport,  or anything.....get on a plane, how many other ares of our lives can it effect.....THE GOVERNMENT CAN NOW GO IN ANY TIME AND SEIZE ALL OUR MEDICAL RECORDS..HIPPA,ANYONE?? the docs are so scared they no longer want to treat, even the ER won't. I AM EXTREMELY SCARED..AND WORRIED!! ANYONE ELSE?.. i am yelling it everywhere i can..PEOPLE like whitney houston who was held up as an icon died from the misuse and abuse of our medication...everyone morns..for what? the abuse of her privileged life..that now will make ours hell, even more?? GREAT IDOL, GREAT WASTE, GREAT GIFT!                                                         THE PIECE OF PAPER ALLOWING DOCTORS TO CARE FOR US, HAS BECOME MORE IMPORT TO THEM THEN OUR WELFARE <3   this country and it's laws are becoming more and more frightening....3rd world countries treat people better than the United States....I do not want to be here anymore, this is a scary place when you need help.                                      there is no, none, compassion in the government, the people who are to "care for us", even our families believe the lies and hype.  I am a disabled vulnerable adult...who is being abused!!

THIS TOO SHALL PASS

                           
                                I have been at HPC close to 6 months,  the most difficult transition I have ever endured, though out i have remained compliant.  Even though  it meant spending that time unable to move in horrid pain.Then cut my medication by a14 they finally increased my medication, then cut it again I have requested from staff  to make sure other doctors where made aware of my condition, before i saw them. That never once happened , I would arrive and the doctor they had no idea why i was there. Even after calling the clinic to make sure they where informed  of my condition and needs. I have endured injections that paralyzed me, no one would help me  afterwards  , medication cuts so low i could have died. I was sent to a psychologist to get medication, they can not prescribe.  Instead of doing an intake for psychiatry, were i would receive help, she did a normal interview. We were told another doctor at the clinic would  help, he did not. That mistakes and lack of communication has caused another 2 month wait to see psychiatry. I tried to take Valium,  they were offering,it did nothing. I then returned to the psychiatrist I knew, who was under prescribing, he had no idea of my condition, but it was something. Before doing so I called the pain clinic one to two times per day, to tell them what I was doing NO ONE EVER CALLED ME BACK. Until today to tell me i am being kicked out for switching back and forth from Valium to klonopin and back with out telling them. As i said i called numerous times, never got a call back to help me, only to tell me I am kicked out. there are other similar issues which i will not bore you with. None the less I like the people at this clinic, other than major communication problems. When the pain was intolerable, they told me to call my primary, who told me to go to the er, who said you have a pain doctor....go to him!!  Just a few weeks ago they asked for a UA, i was not in the least concerned, have have nothing in my system that should not be there. But having problems in that area, they suggested a blood draw, no problem from my stand point. Finally i have mostly all the medication I need, I even walked now every day for 1 hour on the street or 7 min. on the treadmill. THURSDAY I GET A CALL I HAVE FILLED VALIUM TO MUCH, I AM KICKED OUT!!!!  How can i fill too often, they are writing the prescriptions? I contacted the head of the head of the clinic, she was told i had klonopin in my system. Why are they lying about the situation? It has been 6 months of living in a very painful world, why would I destroy it so close to being where I need to be? When things do not make sense, you feel like you are crazy, you are being lied to.By the way my spine has so many issues I will not bore you with all of them, but the worst two, one a fall last year when a chair broke,I re-fractured my spine, it can not be fixed because of the hole there, left by a six year infection. Secondly I have severe stenosis pinching the nerves in my spinal cord. All of these and multiple other conditions cause unbearable horrid pain, all i am asking for is A QUALITY LIFE, I deserve it..I have a right to it! How dare they treat me as a non human being??

THIS TOO SHALL PASS

                                            

Lynn Rubenstein Nicholson

You all have to some degree been hearing about the BS I have been going though with my pain clinic. sending me to doctors without telling them why...or not giving me 1/2 the medications I need, sending e to doctor who did the wrong thing, giving me an injection that burned a hole in my back,that shut down the right side of my body..telling me to call my primary, who tells me go to the ER,who says u have a pain doc..go to them...last night I got a call telling me I have been getting medication from another doctor and taking it ..while i am receiving a similar med from them THOSE..M...F...KICKED ME OUT!!!!! after 6 months of hell.trying my damnedest to follow the rules...I am now 3/4 properly medicated..WHY WOULD I DO SOMETHING SO DUMB?????...I have called the head of the clinic..ombudsman..sending this to the Mpls. newspaper...and by tues. I am contacting the Attorney General..I have been compliant..suffered beyond belief...ans i a going to screw up at the end??? OMG this is me speechless,lol......they only have to check the pharmacy to see i have done nothing!!!!