My Journey

This has not been my day or week. Yesterday my hot water heater broke and I had to finish rinsing my hair and body in cold water. That made the pain level go way up past agony. But, I couldn't get out of the shower with shampoo and soap all over.

Then something fell from the cupboard and hit my back right where it was broken, and that put me on the floor. Then my shoulder, the one with RSD hit the edge of the counter and I passed out from the pain.

Probably not more than a few minutes, but I woke with the dog licking my face and mouth, UGH! But, I know the poor dog must have been scared.

Then getting up I twisted my ankle and so my day just went downhill from there. I went to take a bite of my hamburger and my jaw locked open and dislocated, That was horrible, Got the jaw back in place and then went to turn on the computer and it was all messed up.

So I am going to bed and hope the water bed doesn't spring a leak, that would just be a way to finish this wonderful day, wouldn't it?

Anyway the pain is so bad now I just wish it would stop.

Tomorrow I have to see the Dentist and also I have another filiment growth in my eye and that will have to be removed. So the opthalmologist will remove the filiment and that leaves a hole in the eyeball. Then he will put a lens in, and that will stay for two or three weeks till that heals.

The lens is sort of like a contact lens, except it covers the entire eye ball and the Dr has to put it in and then he will remove it when the hole is totally healed. Plus there are more eyedrops and a ointment to put in my eye.

Well, good night, I'm going to bed and hope for the best.

mY joURNEY

This has not been my day or week. Yesterday my hot water heater broke and I had to finish rinsing my hair and body in cold water. That made the pain level go way up past agony. But, I couldn't get out of the shower with shampoo and soap all over.

Then something fell from the cupboard and hit my back right where it was broken, and that put me on the floor. Then my shoulder, the one with RSD hit the edge of the counter and I passed out from the pain.

Probably not more than a few minutes, but I woke with the dog licking my face and mouth, UGH! But, I know the poor dog must have been scared.

Then getting up I twisted my ankle and so my day just went downhill from there. I went to take a bite of my hamburger and my jaw locked open and dislocated, That was horrible, Got the jaw back in place and then went to turn on the computer and it was all messed up.

So I am going to bed and hope the water bed doesn't spring a leak, that would just be a way to finish this wonderful day, wouldn't it?

Anyway the pain is so bad now I just wish it would stop.

Tomorrow I have to see the Dentist and also I have another filiment growth in my eye and that will have to be removed. So the opthalmologist will remove the filiment and that leaves a hole in the eyeball. Then he will put a lens in, and that will stay for two or three weeks till that heals.

The lens is sort of like a contact lens, except it covers the entire eye ball and the Dr has to put it in and then he will remove it when the hole is totally healed. Plus there are more eyedrops and a ointment to put in my eye.

Well, good night, I'm going to bed and hope for the best.

MY JOURNEY Dec.06,09 A LIFE OF PAIN

This has not been my day or week. Yesterday my hot water heater broke and I had to finish rinsing my hair and body in cold water. That made the pain level go way up past agony. But, I couldn't get out of the shower with shampoo and soap all over.

Then something fell from the cupboard and hit my back right where it was broken, and that put me on the floor. Then my shoulder, the one with RSD hit the edge of the counter and I passed out from the pain.

Probably not more than a few minutes, but I woke with the dog licking my face and mouth, UGH! But, I know the poor dog must have been scared.

Then getting up I twisted my ankle and so my day just went downhill from there. I went to take a bite of my hamburger and my jaw locked open and dislocated, That was horrible, Got the jaw back in place and then went to turn on the computer and it was all messed up.

So I am going to bed and hope the water bed doesn't spring a leak, that would just be a way to finish this wonderful day, wouldn't it?

Anyway the pain is so bad now I just wish it would stop.

Tomorrow I have to see the Dentist and also I have another filiment growth in my eye and that will have to be removed. So the opthalmologist will remove the filiment and that leaves a hole in the eyeball. Then he will put a lens in, and that will stay for two or three weeks till that heals.

The lens is sort of like a contact lens, except it covers the entire eye ball and the Dr has to put it in and then he will remove it when the hole is totally healed. Plus there are more eyedrops and a ointment to put in my eye.

Well, good night, I'm going to bed and hope for the best.

My Journey Oct 31,09 A LIFE OF PAIN

Doctors, Medicines, Pain, Rest, Isolation, - I am so tired of it all.

Mostly though, I am so tired of trying to convince the Drs that I am in pain and need more help. Three of my Doctors agree that I am not getting enough or probably even the wrong kinds of pain meds, but the Dr that has to write the prescriptions won't listen to the other ones.

Changing Drs here in North Carolina is not really an option, it nearly impossible to change Drs when you are on Medicare or Medicaid here. And you need one Dr to release you before you can even try to see another. And you need referrals for everything. I think people should be able to change Drs when the one they are seeing is not providing the care that one needs. Especially when that one has been contacted by other Drs in the hopes of helping.

Now with the bone infection in the front of my mouth, it took me almost two weeks to find a dentist that would even see me, this after explaining to many Dentists how the infection was in im mouth. My GP has had me on antibiotics for two weeks trying to help. And the Dentist said, "You need an oral surgeon---but the oral surgeon says--"You need a referral from a Dentist that our office knows" But since you are one medicaid-we can't see you--Good Luck"

This is outrageous, I just hope I don't lose all my front teeth before I finally get some kink of help. Finally found a dentist who is willing to see me. Hope he can help me. What at terrible system. Because of having so much trouble trying to get help I may loose all my front teeth. The teeth are fine, but the infection is in the bone.

This may not be soo important, but to me, I hate the thought of losing healthy teeth just because I can't find help. Added to this my other conditions, RSD, RA, Fibro, Neuropathy and several other conditions that all cause pain, and I am really worried.

Sometimes the pain is so bad that I can't even stand, and yet, at other times I can walk, So it's hard to try to explain that just because I was able to do something yesterday doesn't mean that I can do the same thing today. People, especially family don't believe that this is the truth and the way it is. They think because yesterday I could stand and was dishes that I can do the same thing today and this is not always so. The pain level varies.

Then I tried to get off the muscle relaxers-I didn't think they were helping me much. But after 5 days my muscles were so knotted up that I couldn't straighten out my legs or arms and my back wouldn't let me get out of bed. So I had to go back on, starting with double doses for five days and then back on regular does. I do try to find out which meds I can do without and which ones I can't. So it goes, and I learn as I go.

Now my credit cards are all over the top and I can't pay any of them. I have been using them for the daily bills and there has to be an end to that. Being disabled, means getting the least amount of money to live on. Wish there were something I could do different but don't know what that could be.

My Journey Oct 16, 09 A LIFE OF PAIN I SAW HIM AGAIN RIGHT OUTSIDE

Today when I went out to the mailbox, the man who tried to rob me was walking a small dog, He was right in front of me, so I said, "Hi, how are you today?" Which is what we say, in this area to strangeres.

I recognized him and I know he knew me as the crazy lady who ran him off a few weeks ago. NOw I'm wondering if he has the nerve to come back. Hope not,

But, if he does, the gun will be loaded this time. Rather scary to have to meet him face to face in the daytime.

I'll be really pissed if he comes back, if he dares, I'll be ready for him. Not to call the cops, untill after I deal with him.
LinLin

A RANDOM ACT OF KINDNESS PASS IT ON

My Journey Oct. 4 A RANDOM ACT OF KINDNESS
Made a early outing, shopping for groceries, I also picked up a cute top. It cost $18.00 and I had just enough to buy it.
An very elderly lady was in line in from of me, she had bought just a few things, and was trying to count her change, she started crying and said, "I'm so sorry"
I told her, "Don't be sorry, you are the most important person in this line right now"
She didn't have enough money , she lacked about a dollar and was going to put her food back, NO, I have been hungry before and know what it's like.
I bent down and snuck a 5 out of my money, touched her on the shoulder and said, "Ma'am, you dropped this." She was crying even more and I almost cried myself. But she took the bill and smiled and said ,"Thank you" with such dignity.
Then I had to ask the teller to check my top for price, I asked the teller if I could put back the top, as I had changed my mind.
All those idiots behind me in line who were making comments like they did should be ashamed and I hope that I shamed them. Two of the people right behind me saw what I did and then they had no more bad things to say.
A RANDOM ACT OF KINDNESS- LET'S PASS IT ON.
It could be just a smile, holding a door for someone, or just saying Hi to someone.

My Journey Oct. 4 A RANDOM ACT OF KINDNESS

Made a early outing, shopping for groceries, I also picked up a cute top. It cost $18.00 and I had just enough to buy it.

An very elderly lady was in line in from of me, she had bought just a few things, and was trying to count her change, she started crying and said, "I'm so sorry"

I told her, "Don't be sorry, you are the most important person in this line right now"

She didn't have enough money , she lacked about a dollar and was going to put her food back, NO, I have been hungry before and know what it's like.

I bent down and snuck a 5 out of my money, touched her on the shoulder and said, "Ma'am, you dropped this." She was crying even more and I almost cried myself. But she took the bill and smiled and said ,"Thank you" with such dignity.

Then I had to ask the teller to check my top for price, I asked the teller if I could put back the top, as I had changed my mind.

All those idiots behind me in line who were making comments like they did should be ashamed and I hope that I shamed them. Two of the people right behind me saw what I did and then they had no more bad things to say.

A RANDOM ACT OF KINDNESS- LET'S PASS IT ON.

It could be just a smile, holding a door for someone, or just saying Hi to someone.

My Journey Sept 26, 09 A LIFE OF PAIN

I was getting changed for bed when I heard a noise near the back of the house, and the dog was barking and jumping at the door to go out.

When I went to let her out, I heard a scratching sound and noticed a person trying to open the window, so I grabbed the pistol, (a pellet pistol, but it looks read) and went outside. He was so intent on the window that I was almost upon him before her noticed me. There I stood, a skinny old woman in her panties holding the pistol near my thigh. The pistol was heavy and I was holding it in the bad hand, I couldn't change hands and wouldn't let it fall. My shoulder, arm , wrist and hand and fingers are still throbbing from the weight of it.

I totally surprised him and asked, " Are you shopping? I have a new Dell computer, a surround sound home theater, and new microwave and just bought a diamond necklace. Come on in and look around while I get dressed, I sure could use a cup of coffee."

Scared the H out of him he said "Are you crazy, bitch?"

I said, "Yes, don't you know who I am?" Crazy as a loon,and twice as mean, well come on in"

He turned and ran off shouting "You crazy bitch-you gonna shoot me?" The poor almost burglar jumped over three fences in his haste to get away. It was so darn funny.

Well I just sat down on the ground and laughed, when I cam in a few minutes later, still in my panties, I just couldn't stop laughing. My poor dog must have thought I was going nuts or something, she got under the desk and wouldn't come out.

This morning I had sense enough to get scared, and couldn't believe I did that and lived through it.

BUt, I am going to see about getting a security system put in, can't afford it, but not sure if I would ever have the courage to do something like this again.

NOT A VICTIM, but now I should be scared.

Can you imagine what I must have looked like, dressed only in a smile and skimpy panties?.

My Journey Sept 25, 09 A LIFE OF PAIN

My Journey Sept 25, 09 A LIFE OF PAIN

The friends I used to have, the places I used to go, the people that I used to talk to, the world I used to know, the things I used to do. The family I thougth I had,

Gone, all of it gone, now there is nothing, a void, noone talks to me, no one knows me, the friends have gone, the family is gone, everything gone.

Whats left is my dog, reading books, watching TV, going on the internet, and always being alone, alone and totally isolated. I see no one, talk to no one, go nowhere, have nothing to care for or about except my dog.

When I became disabled-my world went away, gone was my life, my reason for being, my everything gone.

Never do I complain to anyone that I see face-to-face, never mention my pain, never fail to smile, never am I rude, never do I cry or moan about what I have lost. But I have lost it all, Everything gone.

Now I sit here alone, unwanted, unloved, uncared for, unknown,

So what do I have? I have the people I have met on the internet, some of whom do seem to care, but there is no one to talk to , no one to be with , no one talk to , no one to care, no one who knows me anymore.

No one to say, "Good job" when I managed to get out of the motorized wheelchair and walk again. No one to see me struggle to walk a little further, to do a little more, to watch me try to improve, no one to share the pain, or even share the laughs.

Yet, I must try to continue to improve, to do more, to walk a few more steps, to pet my dog who is my only companion.

Is this a "pity party" if it is, I am partying all alone. No not depressed or even angry. Just sometimes I miss my life, I miss my friends, I miss the conversation, I miss the company, I miss the family, I miss it all.

Tomorrow will be better, it has to be because I keep trying to make it better, Keep feeling that those things that I miss don't matter.

Isolation because of the pain, because I can't do all the things I used to do. But I am still a worthwhile person, I am somebody and will always strive to improve and to get stronger, to walk a few more steps. to continue to try to make friends.

I am a person in pain, but the Pain does not define me, There is much more to me than that. I will hope that tomorrow will be better.

My Journey Sept12, 09 A Life of Pain

This morning I woke up and the pain was so bad that I couldn't move enough to get up. When I could get up, I couldn't stand and had to almost crawl to the bathroom.

Finally got a shower around 4 pm. Gradually the pain eased and then I noticed that something was "wrong" or "different" and couldn't figure out what it was.

I realized that the pain had almost all gone away, What a strange feeling to have the pain be just like a deep ache. I had forgotten what it felt like to be almost without pain. This has lasted for about 3 hours so far. I don't know what to do. I should clean the house, bathe the dog, do everything.

But I think I am just going to watch TV and write about this experience. Please pray that this feeling will last. It would be so wonderful to have a whole day without terrible pain.

Now I am very tired , but don't want to stop even for a minute. But, I really need to rest.

Maybe tomorrow will be without pain, I am going to bed shortly and think positive that I will wake up with as little pain as possible. I pray that it will last.

I would love to walk around the store tomorrow and just enjoy it. That will feel like a miracle to me. I have to believe that I will have a good day tomorrow.

My Journey Sept 02, 09 A Life of Pain

I don't chew gum as a rule, but I bought a pack of gum yesterday. Well, last night I popped two sticks in my mouth and started to chew. WRONG!!!!

I am extremely allergic to cocoanut and palm oils or any products with them in it -soap -cream etc;

So I went straight to the ER. By the time I got there- about a 5 minute drive, I had swollen up to look like I weighed 300 pounds, and I'm only 120 pounds. Then started having trouble breathing.

So after 4 shots of Steroids and 3 other shots and breathing oxygen for about 2 hours, I was finally able to come home. Spent all night very uncomfortable.

I should be ashamed, I have lived with this my whole life and yet I didn't read the ingredients in a product I never used before. Shame on me....Death by Gun...I couldn't stop laughing, but it wasn't funny.

I just can't believe I did this!! So if you are allergic to anything, please make sure that everyone knows it. Write it down and keekp it with your licence. If the allergy is severe tape a not to the dashboard of your car. Keep a not of it on you bed side stand or someplace where a stranger or an EMT would find it in case you are unable to speak.

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.

My Journey May 25

I will be leaving to go to Pennsylvania on June 6. We are leaving at night so the children will sleep most if not all the way. It's about a 7 hour drive.
I don't have to drive at all, and that's a good thing, because driving 2 and a 1/2 hours once a month really is very hard on me. I have to do this to pick up a prescription.

What worries me is that I have never stayed in anothers house since I was 13 years old, and I never visit anyone at their home. This is the only time I ever get panic attacks, so I just don't go to anyones home.

I am going to try and see how it goes, this may be easier than I think it will be because Mary and the children lived with me for way more than a year, and we are used to each other and rarely even look cross at one another.

It will be something for me to try and perhaps it will make a differance in my life. I will be traveling back and forth and hopefully I'll even be able to drive it all by myself after the first time.

I have to be here for the hospital, and the PET scansm Ct scans, the Oncologist, Rheumatologist, Surgeon, Opthalomologist and a few others.

Anyway, I can only try and hope that I can go back and forth and that my sister will take care of my dog. I am also worried about the dog-she has been with me since she was born and I hope that she will be ok.

Another consideration is getting my bills on time, don't want late payments, not only does it cost a lot, it could make the interest charges go up on all my accounts. That's a consideration.

I have decided to go ahead and order the laptop and not obsess about how to pay for it.

Tonight the pain is horrible again and so will have to grab the Kindle 2 and go rest.

I will have my own large bedroom, an area to use as my office and also, if I want, I can still have the finished family room in the basement for my tutoring.

It is also very large and it's in a closed community so there will be security. It all sounds great, just hope I can go there and not have a panic attack. That would really be rotten. But as I say Mary and I are close and maybe that will be the key.
And I'm free to come and go as I please , there and free to travel back and forth however I wish.

My Journey May 20

This morning I woke up on my back. This is so horrible when it happens. It took me a long time just to be able to move at all. It's like being paralyzed, but it's that the pain is so bad, I can't move or even take a good breath.

I usually only sleep on the left side, with pillows under my are, and have to position my arm head an
d neck just so and have a pillow between my knees and ankles.
So waking up on my back is a disaster.

And having to go two hours just to pick up a prescription added to the agony. I didn't see the Dr and have a appointment to see him again in August. Then I am going to appeal one more time to try and get some decent pain meds.

This is something I desperately need, He thinks that older people don't need as much pain meds. But my pain is from many sources and I NEED ENOUGH PAIN meds to at least take the edge off the pain. Or I don't think I can continue living in the agony much longer. IT's barbaric to be made to live like this.

I yearn for the release of pain, just for a few minutes. This pain has stolen my life away. It doesn't have to be this way, if only I could get enough meds to make it worth living than I would be so grateful.

So many of us get to the point where we choose to stop living because of having to live like this. There are good pain medications that would have a positive effect on my life.

Why do the DRs not listen to each patient and to the amount of pain each person has, and if that pain is from more than one or several sources, Pain like this must be treated aggressively or we will not live.

I don't know why and can't understand how the Drs think just because I am older, I don't need as much pain meds. The truth is that I am not getting enough to make it worthwhile to continue living.

My children are grown and my life is over because of the pain. The only thing left is to make it permenant. I will hang on as long as August and beg the DR to help me with the pain.

If I can't get some decent pain relief-then I will not continue living. I just am too exhausted from all the pain. I need help or I need not to be here.

No, I am NOT depressed, nor am I being anything but honest in my effort to get help with the agony. This isn't the way anyone should be forced to live.

I cannot be forced to live anyway, but I am going to keep trying for now, for as long as I can make myself go on.

My Journey May 15

LivingwithPain.Aimoo.com

When the Dr said, "Older patients don't need as much pain medicine" I lost it. I just sat there and wanted to slap him.

I have RSD, Fibro, Ankylosing Spondilitis, Nerve damage due to broken neck and back (difference accidents) plus other conditions, and unfortunately they all cause pain.

Many days I have all I can do just to get up from the bed, and sometimes I have to use the motorized wheel chair just to go three steps. The pain is extreme and it never stops.

When Drs make stupid statement like that, it's just too much. Like adding insult to the pain. Many times I don't even sleep for days and when I do manage to sleep, the pain wakes me up.

Opiates are the best choice for pain control, unfortunately some people use them for recreations. We need those meds to survive. We are not addicts, not liars and we are people in pain who deserve to have that pain treated.

I don't expect to ever be pain free, that's impossible, but at least I should have enough pain relief to be able to function in some sort of way.

When the politions make "War on drugs" what they are really doing is making it harder for people who live a life of agony to get any sort of decent pain relief.

Addicts will always find a way to get what they want, but people who have to live like this are made to feel like criminals because we are in pain.

This is not right. We are only trying to get some relief and have some kind of life other than writhing in agony.

Many of us decide to stop liveing because it's just not worth the agony that we live with day by day. Horrible when this happens, but I cannot find it in my heart to blame thos who chose to stop living this horrible life of pain


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Living in Pain > Approved Members Only

Living in Pain > Approved Members Only

My Journey May 7i

Today I read the article about Paula Abdul and I was appaled by the way the magazine had written the article.

It makes people who must take pain medicnes every day in order to deal with the agony that Chronic INtractable Pain seem like nothing but low-life druggies. And that is not the case.

I have RSD, Fibro, nerve damage from a broken back and a broken back. The pain is horrible. And though I do get some pain medicine it's not enough to even help me function through the day.

I did manage to shower this morning and go to the store, but after about 5 minutes, I have to leave because the pain was so intense. I had to sit in the car and rest so that I could drive home, and the store is less than 10 minutes drive.

If you scroll all the way to the bottom there is a "contact us" there and you can leave your comments without joining or making a profile or anything.
I sent comments to 5 different news shows, The New York Times and the magazine that printed the article.

Of course, I am not expecting any answers but if you are in pain, or know someone whose life is dictated according to how the pain is at any given moment--then speak up and send off some comments.
Some years ago I wrote an editorial about what I saw happening in a nursing home. That article went nationwide and I had many offers to write from several newspapers, and even to appear in public. All of which I declined.

From that one little Letter to the Editor came the fact that now all employees working with patients in nursing homes first have to pass a three month course to be a Certified Nursing Assistant. So speak up.

Some days the pain is so intense that I can't shower, change my clothes , eat or even sleep and making plans is impossible because everything has to be according to the pain levels at the time.

The Drs are afrid to write the prescriptions that we need to be able to function at some level. We are NOT addicts, we are people in pain and we should be treated for that pain.

The medicines were researched and manufactured for the relief of pain, so why can't we get decent pain relief?

So many people who suffer this pain decide to stop living because they just can't go on. Pain is exhausting and I do understand why these people choose to stop living. Personally I will live as long as possible but it would be nice to have just a little less pain.

My Journey May 6

I asked the Dr again to increase the pain meds, or just to give me something for breakthrough pain.

He said, "Older patients don't need as much pain medicine"
Can you even believe this? Does the pain go away just because I am a little older .

About a month ago he said, " You're too young to be in pain like you say you are? Is he crazy, or what?

Of course, I got so P*****that I just wanted to slap him, or cut a hole in his head and pour in some common sense. If only I could. How can he even say such a thing?

I understand why so many pain patients decide to stop living, and can't find it in my heart to blame them. I have thought about stopping living because of the pain. Many times the pain is agony and lasts for days at a time. I will never have a time without pain, I just would like a little help to lower the intensity of the pain a little.

If the Dr could live in my body for a month, he would have so much pain meds that he would be in a coma. That isn't what I want or need, I just NEED a little more help than I am getting.

The only time I have ever had a panic attack is when I go into someone elses house. This aversion or phobia whatever it is has helped to make me isolated and the pain makes it worse.

Now I am planning to go out of state with my grand daughter and stay in her new home. It's so scary for me to even think about this. But she lived in my home for over a year and so I think that may help me. I am committed to try this and do all I can to get over this panic problem. Don't know how it is all going to work out. but I'm going to do my best.

I think that the most important thing we can do is to keep talking about the pain, how it affects our lives. what the Drs say and their attitude towards pain patients.

Keep spreading the word about how our lives are and how we have to try a cope as best we can. So many people on the internet have sent me private messages and told me that because of my speaking out that they now understand pain a little better. My hope is that spreading the word, and I belong to several support groups, is that it will help the entire medical community to understand pain. Not what they read in text books, not what they have been led to believe. But, how it really is to live a life dominated by pain.

The way everything we do or plan has to be based on How The Pain is at the time. Terrible huh?

Someone, somewhere will be helped by our continueing campain of talking about pain. The way we have to live. The agony. The exhaustion.
The being looked donw on. The stupid remarks like "You look fine to Me"
or "all you need is exercise"

We need help, and that help is understanding and DRs that are not afraid to write a prescription that can offer us a little relief.

MY Journey April 30

FREE WRITE

Many times I'll sit here and just type away. I just type whatever I may be thinking at the time. I don't even look at the moniter, I may be watching TV or just thinking.

I mentioned this to my sister and she said, " It's good to FREE WRITE sometimes" I think she has termed a phrase for a whole new genre of writing.

Once I discovered that over the course of three nights I had written a short story. When I read it, it scared me, but the story was good. This story was published and even won awards.

So now , I'll FREE WRITE here and see what happens. I used to write in my sleep as a child, usually peotry and some ot that has been published also.

Today I went to dinner with my grand daughter and her two children . The children are very well behaved and I truly enjoyed out time together.

We were going shoppin after that, but the pain got bad and I had to come home. After taking medicine and resting for three hours, the pain is still very bad,

People in Severe Chronic Intractrable Pain are not "Addicts" rather we are people who live in horrible pain and we do need medicine to help us get through the day.

I do get some pain meds, but not enough to actually help me function in any kind of way. Everything I do depends on the level of pain at the time.

Pain patients need the pain medicines and we are not crazy, liars, looking for sympathy, or just plain lazy or druggies.
The pain meds are not different than people who take medicine for high blood pressure or any other type of medicine.

We do not get high, out judgement is NOT impaired and we do need the help.

A Dr one said, "You look fine to me" after I told him the reasons I needed to adjust the pain meds.

I asked him, "Is "You look fine to me" a diagnosis?" Just because I look ok does not mean that I am ok. A Dr should never belittle a patient that way.

The ER is even worse , they make sure you overhear their little remarks like GOMER - Get Outta My Emergency Room or the other one NHI - No Human Involved.

I am speaking up loud and clear for all the people who live in pain. We are not stupid, not lieing, nor are we just seeking drugs.

If we are seeking more and better pain meds that means that the pain has gotten worse and we have a need and a right to be treated for the pain that we live with every day.

FREE WRITING thanks Carrol for this term. It is exactly what I do.

My Journey April 22

I told the Dr about the last flare that lasted almost two weeks, and the pain is getting worse all the time.

He refused to give me more pain meds and wouldn't even consider anything for break through pain relief. He said, "I don't believe in break through pain meds." Yeah, well if her were the one in pain his "beliefs" would change and quickly.

I asked him for a letter to take with me to the ER for the times when I need extra help with the pain. Again he didn't think that was necessary because the ER will help you when you need it. " It's a good idea to go there when you have the need"

But the ER here has a bad attitude when it comes th helping someone in pain. They say things like, GOMER or NHI

I explained to the Dr GOMER = Get Outta My Emergency Room and NHI = No Humans Involved.

The ER people manage to let the patient "overhear" these comments, They do this because they think that everyone is just seeking drugs. This is not the case--I just need some help now and then. When patients hear these things then they will not return to the ER, because the patient feels so intimidated and embrassed that they would rather suffer agonies than be treated like drug seeking trash.

Recreational drug users will always find a way to get what they want. But the people who are suffering and truly need these drugs are denied them or made to feel like criminals because we need them.

These drugs were researched, and manufactured for the relief of pain, but people in pain are not allowed the drugs that we need to be able to function in any kind of way.

Have you ever gone a week without a shower because of the pain? Gone without eating for days at a time because the pain is agony? Have you worn the same clothes for days because you just couldn't manage to change because of the pain?

I have and these things are amongst the things we usually don't admit to--but they are real and if you are in Chronic Intractible Pain-you have been there too.

My Journey April 16

I see the Rheumy on Tuesday and I'm again going to ask him to increase the pain meds. Or just give me something for break through pain.

The last time I asked him he just SMIRKED at me and said, "I don't believe in breakthrough pain meds." I have tried everything I know to get him to listen about the pain. He said, "Youre to young to be in pain like you say you are? DUH Did I ask for the pain, and is 66 to young to be in pain.

He called me a liar and demeaned my pain all in the same breath. But I know if her were in pain he would have plenty of pain meds. Probably be zonked out , but all I'm asking is a little help to take the edge off the pain.

I know I will never be pain free, but enough pain med could help me to function enought o get through my day, without haviny to lie down.

Have you ever gone a week or more without a shower because the pain is so bad? Not eaten for days because of the pain? Been unable to change you clothes and have to sleep in what you are wearing? Wear you shoes in bed because you can't move enough to take them off?

Well. We don't usually talk about this part of living with chronic intractible pain, but this is what happens. And we need to start talking about living like this. Doctors should listen to the patients and believe us when we try to express how the pain affects our daily lives.

These drugs were researched and manufactured to help relieve pain, and it's cimminal that we can't have access to enough to help us at all

My Journey April 9

I am still waiting for the results of the blood tests. Even though I know it could take up to 6-8 weeks for them to come back, I am calling them every week.

Just so they don't "forget" after all the trouble I had getting these tests done at all.

The Dr is a very smart woman and she will listen, and she knows that there is always much more to learn. And I really respect her for this.

Now if only her office workers had any of her good points, it would be much nicer.

And I'm still trying not to go to Amazon and push that button and have them send me that TV. It's something I really want. The TV in the living room is not in good condition, and I think it won't last much longer.

But $899.00 is a lot for a TV. I know I would enjoy watching TV again if I had this. But I already got the Kindle 2 and that was expensive. I already have 18 books on it. And in the month before getting the Kindle 2, I went a little nuts in the Books-A-Million store and bought about 20 books. So that's a lot of money spend because I wanted to.

All I need to do is go to Amazon and push the button and they will send it to me. But, I just may do that, even though I cannot possible afford it.

I seldom buy anything and having a hard time with this. But then again, when you get older, sometimes you don't worry as much about how to pay for things.

My Journey April 3

I finally got the blood tests that I have been trying to get for so long.

I got tired of the Dr office not doing what they were supposed to be doing. So I went to the office and walked right past the woman at the desk. She called me back, but I just kept walking.

The I walked right into the lab and started giving orders. And I got BOTH of the tests that I have wanted. One for Chronic Pulmonary Histoplasmosis and the other for fibrosing Medaiastinitis, The Dr re-wrote the orders right then. And I was still there when they packed them up for shipment and watched the man take them off.

One goes to the CDC and the other to a lab in Michigan. I know it will take weeks for them to come back, but I am going to call each week and ask about them

The when I was leaving, the nurse tried to talk to me, but I walked right past her and left the office. Let them figgure out to bill me.

the when I got home the nurse called and asked, "Was everything OK?"

I just said, "Yes, it was" then hung up.

This is the woman who refused to tell the Dr I had even called and made me wait almost 4 months for an appointment.

NOw just two more fights on my hands. One the rheumy won't increase the pain meds, or even just give me something for breakthrough pain. When I ask he just has this smirk on his face and says, "I don't believe in breakthrough pain meds."'
Makes me want to slap that s*** eating smirk right off his face.

The the Thorasic surgeon won't let the Oncologist read the PET scans

Don't know how, but I will get what I need..

This is my life that they are screwing with.

My Journey-linlin March 29

I am finally supposed to be getting the blood test that I have been trying to get for almost a year.
It is for Chronic Pulmonary Histoplasmosis and/or Fibrosing Mediastinitis;
This is a lung disease caused by a fungus, most commonly with people who have a supressed immune system. This disease is usually a flu-like illness that last a few days and just goes away.
But in some people it becomes Chronic and can be life-threatening.
If my Diagnosis is correct, I'll be taking Itraconazole which is a anti-fungal antibiotic, This would be long term possibly for life.
This is a very hard med to take because it makes you very weak and ill. But it could cure this particular infection.
The reason it's taken me so long to have this is because of a stupid office worker who thought she knew more than the Dr and refused to tell the Dr that I had called.
It's amazing that someone like that can make such a differance in someones life.
I could have been already taking this for three months, but because of her, I had to wait nearly four months before I saw my Pulmonologist.
Today I am playing with a 12inch Dell computer that I am testing for 90 days. I don't like it, even with adjusting the size of the fonts, it's still too small for me to read comfortable.
Going to try the system again , but if I can't get used to it, I will be returning it to Dell, right away, and get a regular 17Inch laptop.