Day In The Life...

I live in Florida and we just had a hurricane go through, Irma. Luckily I am in the panhandle so all we got was a tropical storm in our area. Some wind, some rain, and a dent in the van where a branch fell on it from the tree. Weather definitely effects chronic pain conditions and I am no exception to that. For the last couple days I have had lots of muscle spams, sciatica, tingling/numbness, shooting pain, and a higher pain level over all. A bad few days so far.

Since this is Chronic Pain Awareness Month (September) I thought this would be a good day to do one of those "Day in the life..." type posts. I think it will be a good idea to give people information on what it is truly like to have a bad day with a chronic pain condition. This is how it effects me, but I figure it will at least give people a rough idea of how it might be effecting someone in their lives and hopefully it will promote understanding.

So lets start with over night, sleeping. (Sleep? What's that?!? LOL) Due to the increased pain and severe muscle spasms I was not able to try to sleep until 2AM. I had a hard time getting comfortable enough to try and fall asleep because when I shifted position the muscles in my back (just under my shoulder blades all the way down to mid thigh on both legs) tightened up and started to spasm. This causes extremely sharp and intense bolts and waves of pain to shoot through the entire area. When it first starts it is extremely intense and takes my breath away. I then have to mentally remind myself to breathe, slowly and calmly. Somewhere around 3AM or so I dozed off. I woke up a few times due to pain and spasms but managed to go back to sleep until 4:30AM. I've been awake since then (it is now 9AM). I have been alternating between applying heat and ice to the affected areas (alternating; 20 minutes on/20 minutes off/switch to the other/repeat). Neither helps tremendously but when it is like this I'll take what I can get. I am having to shift position every 3 to 5 minutes (instead of my normal 8 to 10 minutes) to try and stave off another episode of spasming. This is not very effective since I still get the spasms and sciatica, it just isn't as intense. I am currently sitting at an 8 on the pain scale of 0 to 10. I took my morning medications at 7AM. Right now I am watching vlogs on youtube.

To get breakfast I had to think of something to eat that would require minimal movement and preparation as standing and walking are very painful for me. With the sciatica going on it is also dangerous as my legs can give out without warning and falling to the floor is not a good thing. I decided to make toast because it required the least amount of standing, bending, and reaching for things.

It is now 11AM and I am still in bed shifting position and alternating heat and ice every 20 minutes. I've also done some very gentle stretching to ease muscle stiffness. I am having to shift between sitting and laying down every 5 to 10 minutes. I can go 10 minutes laying on my right side, but only 5 minutes sitting up. Every 5 minutes sitting up I have to shift around and change which way I am leaning (left, right, forward, back against pillows). My left side is the worst and I can't lay on it at all. This is very annoying shifting around all the time. I'm still at a level 8 on the pain scale but am grateful that it is not getting stronger and am hoping it stays this way (I don't think it will as I have to pick my husband up from work this afternoon). I keep thinking of my mother telling me, as a child, when I was restless "Do you have ants in your pants?" and it makes me giggle.

It is now 6PM. I slept from 11:30AM or so until 2:15PM. Was a restless sleep and I woke up a few times with the muscle spasms. Back to alternating heat and ice. At 4:30 or so I went and picked my husband up from work, which hurt a lot, but it felt nice to get out of the house and into the sunshine. Came home and ate dinner which my daughter had cooked. Now, while alternating heat and ice I am going to do a stitching hangout to chat with friends and stitch for distraction. Sometimes it helps distract from the pain but even if that doesn't happen, it always lifts my mood to be chatting with friends.

It is now 9:47PM and just got off the stitching hangout. Made good progress on my project which can be seen on my stitching blog. I continued to alternate heat and ice during the hangout, shifting positions as needed as well as getting up to walk around and stretch my muscles out. My pain has been pretty steady at an 8 all day, but I am grateful that it didn't go higher or hit a pain crisis (level 10). I really didn't want to be curled up in bed and crying from the pain.

Now I will continue with the heat and ice while I watch some stuff on Youtube or Netflix/Hulu until I am sleepy, then I will try to sleep. I don't know how much sleep I will get but am hoping I get more than a couple hours. Lack of adequate sleep does not do good things for my pain, it also makes it harder to mentally deal with the pain.

That's pretty much my day today. My hope in sharing this is to help people understand what it is like during a bad day. As well as to show that being home a lot due to pain is not the fun, relaxing day off that people think it is.

Where am I?

This is basically a copy/paste of what I posted on my stitching blog to let stitchy friends know where I've been. However, this post is more "on topic" in this blog. I feel bad (Lazy etc) just copying it here, but I know that some of the readers of this blog do not read my stitching blog (which is perfectly fine). And since this is where I should write about pain and depression..well anywhoo..here it is. I could ramble a whole lot more, but this is long enough as it is. I will try to ramble some more tomorrow.

Well, to let everyone know, I am still alive and around. I know it's been close to (if not already past [too lazy to check right now, ok I checked it was Feb. 2013]) a year 8 months since I posted here, longer than that since I posted with any regularity. I haven't been stitching much at all. I put a few stitches (total of maybe 50 stitches all told) in a couple of my WIP's here and there, but nothing major at all. *Pictures people making a a cross with their hands and yelling at her: "No stitching?!?! Sacrilege! Back you floss deserter, back you project abuser, back I say!" [raven giggles at herself]* See? I have lost my mind I tell you!

Another odd image: 2 rather official looking ladies at my front door dressed in black suits, complete with sunglasses (think Men In Black, only women in the suits rather than men) and ID wallets. Their badges have the symbol for cross-stitch of a hoop with fabric and a needle parked in said fabric. The words surrounding them are "International Needlework Association: Cross-stitch Div.: Project Protection Agent". They hand me a court order allowing them to confiscate my stash, WIPs, UFOs, and even my Ghingers for their own protection from my abusive neglect. "Now Mrs. Shadowborne if you would please surrender your Needlework ID, Scissors License and Precious Metals Needle Approval Cards. Yes than, very well.  Thank you very much and have a lovely day!" (trust me, it seemed much funnier in my head...oh well never said I was good at comedic writing  LOL)

I signed up for an exchange (due back in February) in the hopes it would help me regain my stitching bug. I have stitched on it. It sits three-quarters completed (would still need put together etc) in my stitching bag (along with 5 other WIPs) and I just can't find the energy to finish it. It is so late and I feel so horrible about it. I have told my partner and she is being so wonderful and understanding about it. My brain however uses it to beat me up. Why does depression have to include mental self-flagellation via self-insults and loads and loads and loads of guilt? It doesn't help, just makes it worse.

What happened? Depression is what happened.

The truth is: I just haven't been able to drum up the desire to stitch, or when I had a tiny inkling of desire, I couldn't drum up the energy to actually do it. My depression finally hit the really bad stages where even the sadness and despair go away, leaving nothing behind....emptiness.

Those woods I posted about a while back, I got lost again I stayed lost and couldn't find my way out. I knew my depression was bad, but I didn't realize it could get even worse, but it did.  I'm not sure that I have found a way out yet, but I am at least forcing myself to try to resume activities I know I used to enjoy doing. But it is so hard to fight back when I can't really do anything but sit in bed all the time. The pain has been insane, and pain like that really does mess up the chemical balance of the brain and nervous system.  In some ways the depression and it's accompanying dissociation is comforting because it removes a lot of emotions, thus I don't feel guilt, emotional pain etc. Instead I just feel empty, vast sweeping blackness..nothing at all. I've had a day here and there where I did have some feelings, but not often, not for long, and not real good feelings/thoughts. Though, there is one ray of sunshine finally: those days with some emotion have been increasing in frequency so that's good. I know that in order to feel better, I have to allow myself to feel at all. Of course the first feelings will include all the guilt, anger, frustration, fear etc. that I have been hiding from and the idea of feeling those things in order to move through them is extremely daunting.

I have days where some feelings are coming back, and when they do I am struggling to let them, to not shove them back down. It is terrifying. Part of me truly wants to stay in the woods, the deepest darkest part where there were no real emotions more often than not. My last post, I tried to end on an improved note. I *did* go stitch (about 15 stitches before giving up) that day though.

Thank you to all those who left me such wonderful comments! I read them all, obsessively more than once because they give me a warm & good feeling inside which is better than the empty nothing I had 99% of the time. I fully intended to reply to each one via email and when I realized a few weeks had gone by I just didn't know what to do. Reply so late? Let it go without telling them what their words mean to you? The self talk turned into how horrible I am, useless, etc etc., and I became afraid of the response I'd get if I replied after such a long time. I felt I would deserve it whether it be an angry/upset/disappointed/whatever response to my reply or no response at all. So, as with everything else for the last few years, I did nothing and just used them as more ammunition for those times when my brain played "beat up the birdie girl!". I truly am sorry for not responding to those comments before now and I appreciate them a great deal, thank you thank you thank you!

I am not posting any of this to make people feel bad for me or anything like that. I am posting it (terrified but going to do it anyway even if it means I have to ask DH to click the publish button) for a few different reasons. One to explain where I've been. Two, to release some of my feelings in hopes my doing so may do some good for someone else. There are other reasons as well, but I think I've rambled quite too much about my depression in what is supposed to be my stitching blog. If you've read this far, Thank You and give yourself a pat on the back, Well Done! (and no I do not mean that sarcastically). I appreciate it :)

Depression (Severe) SUCKS!

Ok this is my 9th attempted post that has been sitting in the drafts folder for a while. It has taken me 2 weeks to write this one as it is. "OK .......here goes...click publish Raven! click it!"

Poems From Pain

I wrote three poems the other night, one after the other. They're written on the back of envelopes because when the need to write them hit, it was extremely urgent and didn't want to wait until I found my poetry journal. I used to write a lot, but lost the desire during an abusive relationship in which I was ridiculed, yelled at, and physically "punished" for writing. Since then writing has become very difficult for me.

I realize I have been gone for a very long time from my blogs and I am sorry for that. I finally have some idea as to what happened with me and as my thoughts settle down, I will eventually write and describe what happened. I am sure I am not the only chronic pain patient who has reacted the way I did, specially those who have dealt with chronic pain for many many years.

Anyway, here are the three poems I wrote the night before last. These poems are copyrighted to me and can not be reprinted, re-posted, downloaded, or used in any manner by anyone else, without my consent.


The Bottomless Pit
© M. Hull Jan. 2, 2013

Lost in the depths of darkness
The bowels of despair
This bottomless pit...
How did I get here?

Stuck,at the bottom of a deep well
Looking up for any sign of light
  none to be seen

How did I get here?

                                                                                               
Praying, wishing, hoping to be saved
   prayers... unanswered
   wishes ...a fool's errand
   Hope...fades to nothing
   nothing left here
   a barren heart
   desiccated soul

As day after day..
   week after week
   month after month
   year after year
pain tears at my soul
    ripping it to shreds
   devours my heart
   destroys what little is left of me

still I wonder..
How did I get here?

I fought for years beyond counting
holding tight to hope
   ...all for nothing

Now here I sit, deep in this pit
   this pit of despair
   with pain my only company

How did I get here?

easy...
I got here through hours, days, weeks, months...years
   unending pain
   increasing disability
It took all I held dear away from me
all abilities...gone

until all that was left...

Is this pit of despair

END


Darkness of Despair
M. Hull © Jan. 2, 2013

I am lost
   blind
   deaf
   dumb
here in the dark

Pain is all I feel

Pain I fought for years
The fight in me is no more

                                                                                   
why bother?
  I can not win
   The pain always overwhelms me
   the dark always surrounds me
   until I am drowning
   the fight washed away


Blind
Deaf
Dumb

Nothing to see or hear
my cries for help go nowhere
   for there is no help, no succor, no healing
   this pain will never end

stuck forever... lost forever
drowning in the tears of pain
deep within the the darkness of despair
END


Grip Of Apathy
M. Hull © 2013

Cold fingers of apathy
reach out and grab me
pulling me down
   into the abyss

No struggle can beat this
no strength can break it's grip
try as hard as I can
..it always fails

falling
   falling
       falling

down
   down
       down
into the deepest darkest pit of despair

                                                                           
swallowed whole

Now I live there.

END


Basically what happened is pretty simple, and so dang common for those who live with constant pain or illness. With the Cymbalta came slightly lowered pain levels. This allowed me to begin to get an actual life back. A life where I could go to the store, go visit friends, go swimming, even go away for a weekend with my DH and have a blast. I was able to cook a few nights a week, do some cleaning every day. Pain crisises became rare as the medication removed the intensity, th sharpness of my pain. Yes I still hurt, but it wasn't as sharp or intense as without the Cymbalta. I got used to this , loved it and threw myself into it with great relief and happiness.

Then came a medication screw up thanks to insurance. So I had to go 2 weeks wihtout Cymbalta. As a result my blood level dropped and my pain went back to its usual 8-10 every day, with the same old sharpness and intensity (butcher knives stabbing the joints instead of a fist in a boxing glove..sharp pain instead of dull) and I ended up back in bed. It took 6 weeks to get the Cymbalta back up to proper blood level. But even then it was too late, I had lost my "new life" even though it was still at the beginning. This hurt soooooo much, to get some back and to lose it again.

I gave up. I no longer wanted to fight back. I was tired of the emotional hurt that comes with losing the new friends you made, losing the ability to do things, losing the lower pain levels etc. etc. So I stopped trying.

It took me until yesterday to figure out what was going on, and it didn't start bothering me until a couple weeks ago. Prior to that I was perfectly happy to be stuck in apathy and doing nothing. It is safer.

That's pretty much it. Hopefully I can write more in depth about it.

Taking Stock In Attempt To Change

For the last 18 months, and probably longer, my pain has been in control of my life not the other way around. When my pain got worse a few years ago I adapted and still managed to function. When it got worse in April 2011, I could not figure out ways to adapt as nothing seemed to work. As time went on, depression increased, mobility decreased and pain took control. My old methods for dealing with and living despite my pain are no longer effective with this new level of pain and symptoms (no standing/walking more than 5 minutes). So I decided to try and get some help. I can't locate a behavioral therapist who deals with chronic pain in my area, so I ordered some books.

I am currently working through "The Chronic Pain Care Workbook" by Michael J. Lewandowski, PH.D. I already knew that my coping mechanisms are not good and in the case that I've been using dissociation to deal with my pain, they have degenerated into very unhealthy mechanisms. I bought the books back in early February I believe. Since then I've read a few pages in each one (I bought 4), then did what has always worked for me. I allowed my mind to analyze and think about the ideas these books represented.

It is very hard for me to admit that my actions and thoughts are contributing to my pain. It is difficult to admit that I lost some of my ability to manage my pain effectively a while ago, and lost the rest of it in the last 18 months or so. It is hard to admit that I gave up. I wanted so much to believe that I was doing everything I could. That I was trying to function with the pain, but the truth is I gave up. The pain got so much worse, with new symptoms and the inability to stand for more than 5 minutes, no real help from my doctor, and I gave up. Now I am sitting here crying because this is the first time that I have faced head on and admitted clearly that I gave up. Instead of saying something like "yeah I've given in BUT <insert any but here>", the truth is I was kidding myself, there has been no actual "but" for a long time. I do occasionally fight back and try to do things like some laundry or housework or cooking, which increase my pain and when that happens, I give up again for a while before trying again. But those attempts are few and far between.

Why am I sharing something that to me is emotionally painful, humiliating, terrifying, and so intensely personal? I'm not really sure what all my reasons are, but the one that comes to mind immediately upon asking myself that question is that I want others who may be in my position to see they are not alone. In addition I am hoping that by sharing the truth about my own mental, emotional, and physical ability to fight/live with my pain, that those who are in the same boat as me, can see that there is still hope. I have reached a point where I am sick of this. I want my life back. The only way to achieve that is to work at it and learn new ways of coping, since obviously my old ways aren't working. Sitting around waiting for something outside of myself to give me back my life obviously doesn't work. So I guess it's time to get off my ass again.

In the book I mentioned above there are lots of exercises. These are designed to help you see where you are now in dealing with your pain. What is working well, what is not working at all, and what could use some improvement to work better. The beginning of the book, like any other self-help book or even therapy with a therapist, starts out with taking stock of where you are right now. Identifying what works, what doesn't etc. Also identifying your readiness to change, your motivations. I understand all of this having gone through it before with and without a therapist when I was dealing with healing after abuse. I've done these things in conjunction with a therapist in order to help my daughter heal from abuse. Many of these first steps are the same.

What surprised me was the fear reaction. Having the fear of facing old abuses in your past, acknowledging the damage it has done and the negative effects it has on your present all made sense to me. Who wants to face such painful memories, accept them, work through them and all that. The fear made sense.

But now, accepting this fear of dealing with my own pain means accepting that I have failed. For some reason I am finding it much harder to accept that I am afraid of trying anything. My biggest fear is increased pain and decreased mobility, followed by fear of failure. For some reason this isn't making sense to me. I keep asking myself "Why am I afraid of my own pain?, heck I've lived with it for 30 years (varying over that time from mild, to bad to worse to now [horrible]). I know I will live with pain the rest of my life. Why am I afraid? Is it really that simple as fear of change?". It isn't making sense to me why I am so scared.

And with so very little for me to look at as things I can do well (in the sense of a job or productive activities), the idea of having failed in dealing with my chronic pain in my daily life is terrifying and painful. I am feeling very vulnerable and very sacred to look at all these things, to see exactly where I have failed. What if admitting all this makes people around me decide I'm no good? What if it makes me decide I'm no good (seeing myself as no good is worse to me than others having that opinion)? What if I fail at trying to change? Heck since I've already failed, what are the chances I can succeed now? I've tried to fight over the past 18 months, but failed time and time again.

But I don't have a choice, I have to try. So I will take my anger and fear and try to harness it as a motivation to get the changes I want. To get my life back.

One of the exercises was to draw a pie chart that represents how I view the way my pain problems affect my life. Included are the pain issues themselves, then social issues and psychological issues. Here is a picture of the pie chart I drew. It clearly shows that the pain issues have overtaken everything else in my own mind; I have allowed the pain issues to overshadow everything, to take over. This ticked me off and scared me and I want to change it. So here's hoping I can do that. I will try simply because I want a life, my life, back.

The book then goes over the Stages Of Change and I am in the "Open to thinking about change, but...". I know Doc's can't fix me. I know that I will have pain for the rest of my life. I know that what I've been doing isn't working. I know my fear of trying to change and failing, isn't going to help. I want to change this pie chart, I want my life back. So now comes working through the fear and getting rid of it so I can take the steps necessary to manage my pain better.

Knowing how I tend to work, when it comes to having to fix things mentally/emotionally/behaviorally, I will probably revisit these topics a few times. Hopefully on this blog so my journey can help others, but it is possible that not all of it will show up here, depending on how personal it is or if the thoughts etc affect someone else, not just me. So most likely I will have to revisit this topic of my fears until I understand them well enough that I can counteract them with more reality based thinking.

Here's hoping that I can get my life back.

Yesterday's Doctor's Visit

Yesterday was my pain management doctor's appointment and since Ron (my husband) was home he went with me. When the doctor finally came into the room it started out as usual, him not really looking at me but focusing on signing the prescriptions the nurse had filled out. Though he was a bit surprised when he entered the room to see my actually laying on my side on the examining table.I usually do not do that, instead I tough it out sitting in the chairs and do my best to hide my pain level. I choose to hide showing it physically because  I am afraid of being accused of lying or acting it up to make it appear worse than it is. Both are things I have been accused of by doctors in my past and 2 different nurses in my current doctor's office. I was hurting a great deal, finally gave in and laid down to get the weight/pressure off my left hip. I couldn't stay laying down for long cuz the right side started to hurt even more, so I had to sit up for a bit and when that started to hurt too much (after a minute or two) I would walk around the room; rinse and repeat. This prompted some questions, which I answered honestly, but he didn't comment on my replies.

I asked about the results of the cat scan that was done in January and was told there was nothing he did not expect regarding my sacrum and SI joints. He then said there was nothing exciting about my lower back either. Since I didn't get to read the report I don't know if that means everything is pretty much the same since the last cat scan (which showed the herniation at L5-S1 and bone fragments within the broken left SI joint) or  if it means that what new stuff did show up is what the doctor had been expecting to see. I like it much better when the doctor actually goes over the written results with me so I can ask questions.

Then the mobility evaluation was brought up. The doctor started to say that he didn't want me to have a power chair and that's when Ron started speaking up. The doctor had been getting ready to leave the room when Ron spoke up, instead he sat back down, crossed his legs and actually *looked* at Ron. He told the doctor that I've been in bed for months, that my pain has been real high, that I fall frequently and that I can't walk from my bedroom to the kitchen without having to sit down in the kitchen doorway or possibly falling. I said that I had been telling the doctor all of this for months, all about the new symptoms and how I can't stand or walk for more than 3 to 5 minutes. I went through it again, describing exactly what happens when I stand for 5 minutes. At minute 2 or 3, I get the sharp stabbing pain at the top of both SI joints and my lower back starts to scream and the sciatica symptoms start. By minute 4 my legs are shaking, shooting pains are going through entire pelvis, down both legs, and up my back. If I continue to stand after that starts, at minute 5 my leg gives out (usually the left, but sometimes both) and I fall. I've tested this many times, timing it as well, and that is the progression. I told him that I have been telling him this for months, which I had. But since I haven't been able to read my medical record, I can't say for sure if he put it in there. I'm pretty sure Ron, the PA, did though because I heard him speak into his tape recorder after a visit with him. (This was a few months ago, before the office stopped using physician's assistants)

The doctor looked down at my chart and started flipping through the pages and he had a slightly sheepish look on his face. Ron then asked me to tell the doctor how many times I fall in a week, so I did (the answer is 2 to 3 on average). The doctor asked if the injection they did helped, and I told him no, which it didn't help and I wasn't expecting it to. They haven't helped ever since I did that fundraising stuff for Kyle's friend, and suffered that fall on Christmas Eve 2010, when I landed on the edge of the arm of that heavy solid wood chair that Ron's dad built. The corner hit the scar over my left SI joint and my right SI joint hit the edge of the desk as I went down.

The doctor checked my reflexes by tapping on my knees and my ankles. My left leg jumped just a little, which surprised me. But when he tapped my right knee, it became obvious that my left leg did not respond the way it should have. It moved just a little, whereas my right leg jerked very noticeably. The same reaction occurred with my ankles, though my left foot barely moved at all. My right foot strongly jerked in response. I could feel the difference too. He didn't say whether he noticed it or not, just but the little reflex thingy back on the counter (it wasn't a hammer, it was a circle on the end of a handle).

The doctor ordered that I undergo the mobility evaluation for the power chair. This is GOOD!

 He then decided it was time to get the prep work done for radio frequency in June or July (when my year is up). He says my record shows I had radio frequency this passed summer, but I don't remember having it. I remember getting injections, but not RF due to insurance issues. I had been told my insurance would only pay for 1 RF procedure per year, not the 4 that I need (2 in lower back, 2 in pelvis). The doctor explained that the insurance company will not pay for more than 1 RF procedure to the same area in one year, but they will pay for more than one procedure to different spots and as long as they don't repeat any of the spinal levels, I can get all 4 sections done. He then said he wanted to go ahead and set up the diagnostics and filled out the order sheet for those. So I am all set for the diagnostic part of radio frequency in April. This way we can just order the RF in June without having to do the diagnostics and making me wait any longer than I already have. This is GOOD!

I mentioned to the doctor that I had purchased some books that are designed to help people suffering with chronic pain to learn techniques to help them cope with it. Some of these things I already do, such as meditating, deep breathing, visualization, and pacing myself but I figured it can't hurt to read them and see if there was anything new I could try. I told him that the book had a paper that lets the patient keep a pain journal and I would start doing that. A pain journal is a daily record of my pain levels. I will fill it out 3 or 4 times a day, writing down pain level by number, what activities I did that increased the pain, and what treatment methods/coping mechanisms I used to help me deal with the pain. This will give him a record of how I experience my pain on a daily basis. He seemed very pleased by both of these things. These are GOOD!

Ron then mentioned this blog and the doctor wrote down the URL. I don't know if he'll actually read it or not. If he does, I hope he isn't expecting daily postings with multiple reports of pain numbers throughout the day etc., like a pain journal. This blog is more for me to get out my thoughts, feelings, and experiences as it pertains to my constant pain (I still think that is a better descriptor than chronic pain). Even though it doesn't give the same day by day accounting as a pain journal does, it can provide the doctor with a better idea of how my pain has been affecting me and how I've been stuck in bed for months and how I am coping with it. So this is GOOD also!


I was saddened by the fact that everything that was said yesterday has been said by me alone for the past 9 months, yet it wasn't taken seriously until Ron was there and said the same things.

I understand that doctors, specially pain management doctors, have to be very very careful now thanks to the DEA's war on doctors and chronic pain patients. I understand that they have to be watchful and careful so they don't give a prescription to someone who turns out to be an addict. I understand that they are working under the threat of not only going to jail and losing their license to practice medicine, but also under the additional threat of losing everything they own. I understand where the doctor is coming from, I really do. But I can't help but feeling upset that (it seems) I was not believed until my husband talked to the doctor.

I think it is very wrong that doctors now have to assume their patients are exhibiting drug seeking behavior when all they are doing is what they should be doing, describing their symptoms to their physician, especially if those symptoms have changed. I think it is wrong that a patient has to bring in a witness to be believed. I am sure that this must frustrate the doctors as well because it interferes with their ability to develop a respectful and trusting relationship with their patients. All these new regulations and rules interfere with the doctor's ability to help people, which is usually why a person becomes a doctor in the first place.

Don't get me wrong, I like my doctor a great deal. He is understanding and genuinely wants to help me control my pain. If I didn't like my doctor I wouldn't have remained a patient of his office for the past 9 years. It is just frustrating to see how pain management has changed over those 9 years, to what it has become, as a result of the war on doctors. I can only imagine how much this must upset my doctors as well as it upsets me.

A good loss of pride

My eldest niece has come to live with us. She is 17 and a wonderful girl. Last night we needed to go to the store because she needed some clothes for school that meet the uniform based dress code. I'm not sure why but when she mentioned it something in me jumped up and seemed to yell "I WANT TO GO TO THE STORE!". This surprised me because I have not wanted to go to the store in a while since walking around really hurts. Also I have refused to use the little electric scooter type carts in the stores. The idea of using one made me feel embarrassed, humiliated, and afraid everyone would be looking at me. I know these are stupid reasons for not using an item that is meant to help my mobility and thus retain (or regain) some of my independence. Ron said I could go to the store but I had to promise to use one of the electric scooters and I agreed.

On the way to Wal Mart I was nervous and felt a bit defeated, but I was also so happy to be out of the house for something other than a doctor's appointment or procedure. So when we got to the store I chose a scooter and sat down. I read the directions and was happy to see how easy this thing would be to use.

This is not exactly like the one I used but very very close. Anyway, I used the scooter and at first I felt a bit embarrassed but I was surprised to find that it passed quickly. It was replaced with this wonderful feeling of freedom and happiness! I was shopping and could zip around the entire store without all that severe pain I now get when I walk or stand for more than 3 to 5 minutes! I was ecstatic! Heather and I got quite a few laughs out of it as well. They take a bit of getting used to for things like turning and backing up. I kept backing up on accident, or hitting a rack when I turned. At one point I accidentally pushed the end cap of one aisle out from where it was supposed to be. Heather put it back for me. I was a little embarrassed when I did that, but mostly I laughed at my mistakes and just enjoyed being able to go all over the store without hurting myself.

It was fantastic! Getting a taste of the freedom and independence I could have if I owned a scooter erased all my stupid reasons for not trying to get one before. Those reasons all boiled down to pride. Now I want a scooter, so I am going to find out how to go about getting one. Either a scooter or an electric wheelchair, something so I can have my independence back a little.

I am very proud of myself for finally trying the scooter. I also feel really stupid for not trying it sooner!

Here's hoping I can get one.