My Journey August 30, 09 A Life of Pain

When I saw my lung specialist on Tuesday, she told me she had injured her back somehow. She was still in terrible pain after almost two weeks.

So we got talking and her DR had told her to lie totally flat and keep ice on her back. WRONG!

I told her how I try to live with the pain, including hear, lieing on the side , with knees bent, back aligned and shoulders and hips straight , with a small pillow between the knees.

She called me last night about 10pm and thanked me. She tried to manage her pain in the ways I explained to her, rather than what the Dr had told her and she said that doing it my way, she did find some relief.

I told her that Drs would do better if they listened more to their patients, especially those who were living with the problems that the DRs were trying to treat. Those patients know what helps and learn what to do through experience, and she agreed with that also.

If ice feels better -use it or if hear feels better than that is what you should use. Ice usually will help at first when the swelling is a problem, but heat seems to help more people to deal with long term pain.

This Dr told me I should call the pain specialist that reccommended the pain meds for me. I did, and the pain specialist agreed that I was not getting enough pain meds. BUT, since I was sent to him for evaluation and not treatment that he couldn't help me. He did say he would speak to the Rheumatologist that is writing my pain scripts.

The Rheumy says that he doesn't believe in breakthrough pain relief. He thinks that the Emergency Room would be happy to give me a shot at any time that I needed extra pain relief.

He must not understand how ERs operate, The ER calls pain patients GOMER (get outta my emergency room) they will force you to wait for hours, pain patients are considered to be wasting the time and are not seen at all until they can put them off no longer. The nurses are instructed to "Let the wait" they are only looking for drugs.

NOT and so I continue to be in needless suffering and there is just no help out there for me. I cannot get anyone to listen.

Living in terrible pain is just not living. It's existing and not having even a few hours of relief. But I think if I were to be without pain for a time I would just sleep. Sleep is hard to come by. And there again, the Dr doesn't believe that pain wakes me up,

He says, "You can't feel pain in your sleep-so therefore it can't wake you up" How crazy is that?

We all know that pain keeps us awake and when we do sleep, it wakes us up.

Another thing is that most pain patients have to sign contracts, take urine or blood tests. This is not the way we should be treated.

We are not addicts. We are people in pain and we may be dependant on narcotics to have any quality of life and we should not be subjected to being made to feel like criminals.

Educate the Drs, Speak up and Speak out. Let the world know that just because we are in pain doesn't mean that we can't have good days when the pain may be less.

We can be happy and even laugh even when we are suffering. We are people in pain. Pain can only rule our lives when we can't get the proper help to control that pain.

WE DESERVE BETTER

My Journey Aug 25, 09 A Life of Pain

Yesterday I couldn't walk at all. So after not sleeping for two nights, today was pretty hard

I had an appointment with the Lung Specialist, all is well, but I have to increase the Asthma meds and do another breathing test. No problem there, but I have to increase the meds for a week because I had a asthma attack in her office. It was a slight one, but she though different. Oh well. She is a good Dr, so I will follow her advice.

But she hurt her back on Friday and she had never been in bad pain, The Neuro told her to lie Flat on her back with her legs straight. Can you imagine?

I know that they do tell people this, but most people who live with back pain or Ankylosing Spondylitis (a big name for arthritis of the spine) know this is NOT how to lie or try to sleep when the pain is severe in the small of the back. Especially when it controls the legs.

We had a long talk and I told her how I lie on my side with knees bent. More to it than that, but you know what I mean. She LISTENED , but I told her this is how I and others I know try to sleep. We laughed, I was giving helpful advice to the Dr.

She didn't go to the ER, because she said, she knew she would get attended to immediately, but that they would want to do a lot of tests and things that she didn't want to bother with. So she put up with the pain, and her husband (another Dr) gave her pain meds over the weekend. I told her that I wouldn't go to the ER for Pain because they just call pain patients GOMER and NHI. Not nice.

She told me to call the Pain Specialist that the Rheumy sent me to , and ask him to talk to the Dr that writes the RX for pain. She agreed that I need something for breakthrough. And said I can and should do this, and if he helps me, then to tell the rheumy . Then he would have to write the script for something or other.

But I am afraid that the Dr will get Peed off and drop me-then I wouldn't have any pain meds at all. So it's being caught in a trap.

So I did call the Pain Specialist and he said though he agrees , but, he can't do anything for me because the Rheumy writes the RX and he (the pain specialist) was only called for a referral. So therefore, even though he wanted to give me more help, his hands were tied, because I was only referred to him for evaluation and not for treatment.

I hoped for help, but NOT> Everyone agrees with me-but no one, for one reason or another wants or feels that they can help me. This is so discouraging.

Then another Dr in the same practice as the one I saw today , yelled at me because I was not using my cane. He said, "Why aren't you in your chair?" I haven't used the wheelchair for several months, and not using the cane much. But he didn't know that.

So the more I do, the harder things seem to get.

After being paralized, making myself learn to walk again, then again ( after breaking my back)

having to use the chair, and now walking again and without the cane, It seems that someone in the medical community would see that I do not just sit there and gulp pills. I work hard and force myself to keep on moving . even when the pain is so bad that I can't do more than leak silent tears, many times not being able to move at all, but still trying and never giving up.

Maybe it's time to just give up. I have been fighting this battle so hard for so many years, I'm just so tired of trying and maybe it's time to stop .

Here's a short history. Fractured Skull and Brain Concussion, in a come for 15 days.

Broke three bones in my neck, crushed my vocal cords and lost a lot of memory. Nerve damage. Paralized lost so much weight that they thought I would die.

Broke my lower back (4 places) nerve damage , lost the ability to walk, they send me home with a Diagnosis of TERMINAL> I said I wanted to be with my children and promised to come back to the hospital to die. I weighed 80 pounds after this one, severe malnutrition.

Another accident, broke too many bones to count, and my poor motorcycle died in a lot of pieces. Lost most of the skin on the right side, This is the last one and combined with all the others and the conditions I have the pain is relentless. My daughter calles my MOMMY Knivel.

Then Sudden Death, and the Dr asked me "Did anyone else in your family die of Sudden Death?" I laughed and said, "Guess so , they are dead, arent they" I did not know that Sudden Death is a real thing. The Dr was insulted because I laughed but then he explained it to me. Scary!!

Short history, there's more but this is the short history.

Maybe it's time to just stop , I don't know how to quit trying, but it gets harder when the Drs won't even bother to try to help.

I am so tired,

tired of pain, tired of trying, tired of fighting the battle alone, tired of all the attitudes.

NO I WILL NEVER GIVE UP NEVER ,

My Journey Aug 20 A Life of Pain

I saw the Dr yesterday and again asked him to increase the amount of the pain meds. Of course, he would not listen. I have been taking the exact amount for more than four years, and it wasn't enough even then to actually help with the pain very much at all.

O can't understand why he doesn't listen, I have been asking him every three months to let me have more and all he says is 'you look fine' but looking and being in pain are two very different things. I don't want amy more than I need.

But I would like to be able to sleep more than a hour or so before the pain wakes me up, that is, when I can even get to sleep. I would like enough relief so that I can get to the fridge and to the stove when I am hungry and be able to fix something to eat. Rather than waiting for the pain to ease up
enough for me to do that. Right now the pain is so bad I can't get up, or I would be lieing down again.

This is no way to live, in constant pain 24/7 and no relief to be had, he could give me enough pain relief to actually make a differance in the way I live, in every aspect of my day and night.

No one should have to live in pain like this, constantly--I just don't know how much longer I can go on k nowing that I don't have enough pain meds to help me at all. It wasn't enough four or five years ago, and it's now enough now.

This is not right, he thinks "YOu should be used to it by now" do we "get used" to the pain, does that mean the pain ceases to be felt? How crazy is that?

When the meds are there and very easy for him to write a script that could change my life and let me have some quality of life, even if it's just a little less pain.