I haven't blogged in a few days, I really thought that last one would unblock me. But I'm afraid it's more than that. I'm stuck, . Not just in my ability to write more but I think because of my body and the fact that no one will help control this pain, I'm feeling stuck in every direction I turn.

This is really frustrating, I've always been a person to pull myself up, dust myself off, and keep on moving. And usually with a smile on my face, some how for some reason it's not happening this time. Maybe because I'm trying to change too many things at one time, so none of them seem to change. I can't even seem to find my smile right now, but four years of nonstop, wait I did have three weeks without pain, it's getting harder and harder to see the light. And every time I do something snuffs it out. That's all I can write today

                                                                              Today I think I'll blog about relationships especially those between the disabled person and those around them that are their support system, and their loved ones.
I know it can be very difficult to be around someone who is disabled, they constantly need something. Whether it be food, shower, laundry, kitchen cleaned, and my favorite a ride to the doctor's office. I really do understand how difficult it is for the people around us, they have lives. Their lives are quite full, they did not ask to get stuck with someone like us. Someone who needs so much attention, but that just talking about timewise , i am also talking about mental and emotional support. Most people it would seem just don't have it in them, to give to another human in such a time-consuming, emotionally consuming way.
It is equally hard for us who need the help. Being a burden to others is a horrible feeling made even worse by other people's response. The worst thing for me is when I ask for some help and the response is go ask someone else. And when you ask that person they say ask someone else. It really is quite humiliating, and emotionally painful. But once again, I do understand that I am seen as a burden, and most of the people around me, they would rather I not be in this position, but then I'd rather not be in this condition. I can't tell you how many times I heard you can do this it yourself, or I'm to busy right now maybe later. Or I'm too tired right now ask me again another time. Don't they understand that it's hard enough to ask just once? But to ask multiple times can be downright hurtful.
Dammit the mouse back back l least I have company. But that little bugger needs to start paying rent! Bottom line here is that this is really hard on everyone. Those of us who are disabled, are already dealing with so many issues, our bodies that are falling apart, the pain that we live with is so damaging not only to our bodies but to our souls as well. Never mind the effect it has on our brain and when that physical pain kicks in so strong and sometimes for so long  that our emotional beings become affected as well. Then those around us tend to get mad, they get mad, they judge, and start dictating how we should behave. They do not understand that our behavior, our very personalities become affected by our condition. Even the condition causes a lot of  the changes, but the medications we are given can also have a profound effect on our minds and our personalities. Nine times out of 10 it is the most benign of the medications that seem to have this effect, although the doctors will tell our caregivers that it is stronger stuff that is causing this. And because we are not our right minds, or so they think, no one listens to what we have to say, just because it's our bodies our minds that are being affected, we shouldn't have a clue as to the cause? That's another issue that makes it all so much more difficult, not being heard, people hearing what they choose to hear instead of what is really being said.
The hardest part for me is being disowned by the very people that should be my support system. I am told that I am hurtful and angry and they don't want to be around me anymore. The saddest part is when all of this happened I was on a medication that completely changed my personality, and I have no recollection of it. In trying to explain that to them,I am told that I refuse to  take responsibility for my actions. Kind of hard to take responsibility for actions you don't remember, even though I have apologized numerous times and I really am sorry and I am sorry that I don't remember. It's not an excuse nor is it away out of taking responsibility, it's just simply a fact.
While this blog's been sitting in me for quite a while, and I really did not want nor know how to put it out there. But it is blocking me from continuing forward and that is not good. I do want it to end by saying, I appreciate each and every thing they do for me more than there will ever know, maybe it's because I know how much they do not want to do it, but either way I do appreciate everything so very much. Believe it or not I'm grateful, they won't believe it but I to know that. Just like I know many other things, I am not believed or heard because I am disabled.

                           

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