We are strong

[Lea]

:eek: Hello my fellow CP'ers.

Over the past few months, I have really been down on myself. My pain is out of control, my body is falling apart, and I can't do much of what I did physically even 5 years ago. At 46, I figured I was just a whiney, no good wuss:(

Until last week when I met with my new GP. I gave her my medical history and all that I have gone through. She sat back and in amazement said "Boy, you are doing really good for what you are dealing with!"

HUH!!:confused: I'm doing good? My DH is always insinuating that I'm lazy, I sleep too much, and I'm just plain whiney and just no fun. How could I be doing good?

It was after pondering this question that I had a revelation!:eek: I am STRONG! Not weak. Not whiney. Not a wuss.

Despite two spinal surgeries, gastroparesis, chronic pain, nerve damage, another disc exploding in my neck, wide spread arthritis, high blood pressure, and generally feeling like a truck has run over me.....I AM STRONG!!

I work 40 hours a week, I'm a productive and valued employee,take care of my 11 y/o son by myself half the time, run a household, shop, lead worship at church, and do fund raising for a youth facility. I do all of this DESPITE my pain.

I could've stayed on disability and hid myself away and felt sorry for myself, BUT I clawed my way back to society and went to work.

I read all the entries here of our members working, going to school, taking care of their children and spouses, and holding out hope to others DESPITE their pain.

YOU ARE STRONG!!

Don't let anyone make you feel like you aren't good enough, that you don't contribute to your family or communities. I felt that way for a long time until I reframed how I saw myself. I have started standing up to my DH when he complains if I sleep in on the weekend or if I say I'm tired. I AM tired, but it's because I have worked my butt off to be a productive member of society and to provide for my family, SO GET OFF MY CASE!!! :eek:

I feel better now. Thanks for listening:D

[Mark N]

Lea, you are so right about being strong to go through all we do. I fought for years to keep working and still struggle to do all I can in spite of my pain. When pain dominates our bodies and minds the way it does ours, it is amazing we can do anything especially with how many years some of us have gone through this.

[Kathi49]

Way to go Lea!!! I like it!

We are strong! To contend with this stuff day in and day out takes a strength that the average person has no clue about.

[jena1225]

Wow Lea, great post! :)

I am sitting here in awe of all the things you do after what you have to contend with! I just cannot see how anyone, especially someone so close to you! can't see the same thing :confused:

Although I know it must be a constant challenge, it's great that you refuse to let what others think affect you, something that I don't think I could do!

I also think that maybe YOUR attitude may have a positive affect on DH's. Let's just hope, as it can make it so much easier when they are on our side :)

[Boxerlover]

Leah,

Good for you for all you are able to do, I envy you that. But I wish you could have rephraised at your comment about staying on disability and hiding away. ;) I am on disability and believe you me I would much rather be working my 60 hour weeks that I did before I became ill. It is not a choice for me. I am not a wuss either because I can't work, I am too ill to work.

Now before I get yelled at I know you did not intentionally mean to put anyone down, it's mostly that i feel bad about not working and would do just about anything to go back. I am also sensitive because I have been told that people with cancer do more than I have(although I have had cancer and for me it was easier than dealing with what I do now). Trust me the "letter to normals" is on the way to those people.

We all need to give ourselves credit for what we can do, I think we tend to beat ourselves us and compare ourselves to what we were before. At least I tend to.

Melissa

[Kira]

Lea,

I agree that we ARE strong for finding our own ways to keep going in spite of the illness and pain we face. Like you, I struggle with guilt about having to redefine my own limits. I feel like I am being lazy or whiny when I have to step back and rest. But you're right... we are strong...

----------------------------------------------------------------------
I am also sensitive because I have been told that people with cancer do more than I have(although I have had cancer and for me it was easier than dealing with what I do now).

This bugs me, too... the comments about people with cancer doing more, with the implication that nothing can possibly be as bad as cancer so I must be lazy or weak or whatever (for needing to take time to rest, taking pain meds, etc).

What people don't realize is that there are a million types of cancer. Some kinds of cancer are more life-threatening or more disabling or harder to treat than others. Some people's cancer is widespread and has metastasized to other organs, but some people's cancer is limited to a small, localized mass that can be removed surgically... obviously it is more life-threatening if it is widespread than if it is localized and can be removed. Some tumors hurt a lot more than others... pancreatic cancer, bone cancer, etc hurt a lot more than asymptomatic skin lesions or breast lumps. Some tumors make you unable to breathe or make you throw up all the time or give you horrible headaches or make you very susceptible to infections, while other tumors cause no symptoms at all and are found on routine screening tests. The different chemo drugs all have different side effects, too... some make you lose your hair and some don't; some make you throw up all of the time and some don't cause much nausea; some give you bad neuropathy and some don't.

So when people talk about cancer as though it is always this horrible disease and imply that other diseases can't possibly be as bad as cancer, they are failing to recognize that some people have a pretty easy time with their cancer, while others suffer a lot. Not all cancer hurts. Not all cancer causes disabling symptoms. Not all cancer kills you. But a lot of people, and even doctors, give cancer this respect that they don't give other diseases.

People don't seem to realize that there are a million illnesses BESIDES cancer that can make you really, really sick and miserable and can threaten your life. My disease is life-threatening, can cause multiple organs to fail, and has a lot of disabling symptoms. There are a lot of other diseases that are just as "serious" as cancer, and that are more "serious" than a lot of types of cancer.

It is frustrating because people hear these stories about people with cancer who keep working, accomplish things, and even are athletes. When they hear about people who can do all of that stuff even with cancer, they figure that those of us with diseases that aren't cancer must be being lazy or whiny or weak if we need to step back and respect our bodies' limits. What they don't realize is that some of us are sicker than those people with cancer.

That's not to say that there aren't a lot of cancer patients that suffer A LOT... as you guys know, my mom went through surgery, chemo, and radiation for breast cancer 4 years ago and now is going through treatment for colon cancer (surgery a few weeks ago; starting chemo on Monday). She also had a hysterectomy for cervical cancer 17 yrs ago and had a squamous cell skin cancer lesion removed 2 yrs ago. So I have watched her suffer and know that it isn't easy. Chemo is horrible, nasty stuff. Recovery from the surgeries has been difficult. Radiation left painful skin breakdown. But she got through it and has been FINE in between. Of course there are people that are a lot sicker than she is... watching my grandfather (who was a father figure to me) die from lung cancer was very hard, because he struggled so much for every breath and suffered a lot. Cancer can be really nasty, but so can many other illnesses.

I hate when doctors and insurance companies make the distinction between "cancer pain" and "non-cancer pain," as though cancer pain is more deserving of aggressive treatment than non-cancer pain. I know that part of that distinction is made because of the (false) assumption that cancer pain means a patient is going to die soon, so addiction and tolerance don't matter. Well, cancer doesn't always kill you... and many non-cancer illnesses do. I hate that they make these faulty assumptions which lead to serious decreases in access to care for many patients that are suffering from other non-cancer illnesses.

If the intention is to use the word "cancer" as an approximation for "life-threatening," then it would be more accurate to divide it into "pain from life-threatening disease" and "pain from non-life-threatening disease." Of course, the reason they make the distinction is so that they can feel like they aren't making addicts out of those of us who aren't expected to die in the near future. They feel like it doesn't matter if you get addicted if you are going to die.

The whole reason they make that distinction is because of our society's pervasive attitude of opiophobia. So, the more well-informed alternative is not to use such broad categories to decide whether or not patients "deserve" pain management, but rather to make that decision based on physicians' assessments of individual patients and their pain management needs, regardless of if they are expected to die in the near future or not. If a patient isn't expected to die in the near future, then obviously there needs to be good pain management practices to minimize the risk of addiction/drug abuse, but it isn't grounds to deny someone treatment of their pain. Unfortunately, many doctors and insurance companies don't agree with this line of thinking and chose to rely on the archaic, traditional division between "cancer pain" and "non-cancer pain" rather than challenging their own opiophobia and focusing on providing patients with the best care possible.

[Lea]

Leah,

Good for you for all you are able to do, I envy you that. But I wish you could have rephraised at your comment about staying on disability and hiding away. ;) I am on disability and believe you me I would much rather be working my 60 hour weeks that I did before I became ill. It is not a choice for me. I am not a wuss either because I can't work, I am too ill to work.

Now before I get yelled at I know you did not intentionally mean to put anyone down, it's mostly that i feel bad about not working and would do just about anything to go back. I am also sensitive because I have been told that people with cancer do more than I have(although I have had cancer and for me it was easier than dealing with what I do now). Trust me the "letter to normals" is on the way to those people.

We all need to give ourselves credit for what we can do, I think we tend to beat ourselves us and compare ourselves to what we were before. At least I tend to.

Melissa

I understand exactly what you are saying, so don't worry about it. The 2 years I had to stay at home were devastating to me. I am still worried about how long I can stay afloat in the job market. Everyday is a little harder than the next.

It's the one foot in front of the other scenario. I have just finally decided that I am someone of value and so are you. So many times we are defined by our disabilities and I know we are all much more than our pain. At the same time, we are also defined by our work, especially the men. So it is a hard line to walk.

The point is it shouldn't matter what anyone thinks about you or me, or whether we work or not.

I want to be comfortable with who I am now and not dwell on who I used to be.

That which doesn't kill us makes us stronger.

[Lea]

Mark, Kathie, and Jena,

You all contribute so much to your families and those around you. I know you've helped many people here, including me.

I think my DH only sees that I can function and has no clue how much energy it takes. When he complained about me saying I was tired the other day I just finally let him have it. I told him, "you take the equivilent of more than 160mg of Morphine a day and see if you are tired or not!" it shut him up quick. He forgets how I used to scream out in the middle of the night and stay curled in a fetal position before my pain was more controlled. Because I try to put my best face forward when I'm in public or working, he doesn't understand that the only place I can truly collapse is in the privacy of my home.

There are many things that I have to say no to and if I vacuum today, I may not be able to make it out of bed for church the next day. I pick and choose. I don't like it, but that is reality.

Living with pain is hard and I don't know how to convey to my DH. Fortunately my parents and my wonderful son all understand and support me.

Didn't mean to ramble. This is just such a hot button for anyone dealing with the pain monster.

[Mark N]

lea, I know what it is like to not have a spouse that supports you. My wife was hard to get along with but once my disability hit she has been very hard to get along with as she doesn't act like she understands what I am going through. Our lives are tough and having a spouse that is hard to get along with is more than what we should have to deal with. It is difficult to love someone and have them treat us like this.

Kira, I agree with what you are saying. For the medical profession to separate cancer pain from our type of pain is wrong. The disadvantage with CP is we will not be cured in most cases but neither will we die [other than a few that are here] from our condition which would end our suffering. It is too bad that there is not more research into pain relief as so many diseases would benefit from it.

[Kira]

The disadvantage with CP is we will not be cured in most cases but neither will we die [other than a few that are here] from our condition which would end our suffering.

I will die from my disease.

[BrokenBladder]

Just my two cents worth..........
It hurts me every day that I can't work, but I do admire those who can, in fact I think I envy them.
Lea just hang on for as long as you can, that's what I did. Being at home everyday and having people judge me because I don't work is just plain hurtful. Life certainly throws us a curve ball and in our case it's CP.
Take Care,

[GardeniaGirl]

I honestly don't feel all that strong any more.

I am barely hanging on by a thread.

I wouldn't be at my 28-hour per week job unless I could set my own hours, work from home, sleep in late and then go in late, and be totally sedentary.

My job is intellectually demanding, but that's about it.

I hate the downward spiral I am on.

I feel like I am not allowed to say that I wish I could see an endpoint in the next ___ years.

I feel burdened that I have to keep fighting against a disease in order to have only the merest semblance of a life.

I agree with so much of what Kira wrote about cancer.

The ten years I have spent with this crappy disease has yielded way more suffering than many, many cancer survivors have ever faced - and yet, there is ZERO recognition of this.

I think people focus on cancer because it can be fatal.

But what people do not realize is how much long-term, un-ending suffering is involved with so many other diseases and conditions. This is invisible.

My life will be worse in different ways when I can't work anymore. It is very crappy now in many ways, but not working will make it worse. I also happen to enjoy my position and many co-workers quite a bit, so that is a motivating factor.

[curiousforever]

It's really hard to do when people were told my situation and chose uneducated responses to it.

I/we have been made to feel like lepers because of my chronic pain - although WE did nothing wrong.

So, I have noone to talk with that is closer than 1300 miles.

I sure don't feel strong.

But I'm very happy that you do.

I also envy those working. I'm going to attempt school as that I can try to do online....

[Mark N]

The change from working with pain to being unable to work due to my pain made the years of struggling to work with pain worthwhile. Not only are we not allowed to have an end date as cancer patients do [ie their chemo treatment or other treatments] but we don't have doctors that actively work to cure our pain because there is no known cure right now. It would be wonderful to have a treatment to end my pain and get me back to my life or to fail and know that the suffering will be over soon.

I don't let others bother me with what they think about my condition as long as my family understands how things are. I am sure people see me out doing so small chore and think there is no way he should be not working. But they don't get to see days like today were my pain is overwhelming and I can't do simple things or the times later on when I suffer for trying to do something to feel human again. Only those close to my lfe can see the real impact of my pain.

[Boxerlover]

Lea, AMEN to that sister!:D

Kira,

I will die from my disease as well and I completely agree with what you posted. When I had cancer I had all the support and sympathy I could find but now you would think I had the plague.

I go to a cancer center for treatment,check-ups,etc. and they have everything you could possibly imagine for the cancer patient and family. Support, help, anything that someone chronically ill could receive. Since I am a multi-illness patient I asked if there were things I could participate in even though they are currently related to my other illness and not my cancer. NOPE, they only want to deal with the cancer. Now I know as they are a cancer facility they obviously specialize, but there has to be other patients out there besides myself who have other illnesses and need to be addresses as patients in whole, not separating the illnesses.

I have searched high and low for therapist and sipport groups either dealing with my illness or close to it and there is nothing. My husband would give anything to be able to go to a support group. Now if I had my cancer back, it would be like I'd hit the lottery. I could sign up for support, massage, someone to come in and clean my house, drive me to appointments, anything I needed. Unbelievable and the only way to get these services is for the treating physician to sign you up.

Sorry to go on, I guess I was more upset by this then I thought:eek:

Take care
Melissa

[GardeniaGirl]

I get virtually no sympathy from my family (defined as 2 brothers and my father - I am estranged from my mother by choice).

I often wonder if I do get cancer in the next however many years, what will change then? Will they act different? Will they express that they care? Will they want to spend time with me?

I don't think they realize that I am beginning to feel like I am on my death bed, emotionally and physically, even if not literally.

I could use that caring, concern, and support NOW -- not when I get labelled "terminal."

[Lea]

I understand what everyone is feeling. Through no fault of our own, we have been dealt a debilitating condition with all kinds of stigma attached to it. I never thought in a million years that I would be taking opiates, large amount of opiates, everyday. But that has been my reality for the last 3 years and the reality most of you face everyday.

I started this thread because I needed to validate myself as a person of some worth. I am a very strong woman of faith and it has gotten me through alot, but I still have to overcome my own "stinkin thinkin" that keeps me from being who I am suppose to be.

I get scared too. There have been many days in the past 6 months that I could just not crawl out of bed to be at work on time. I consider myself fortunate to have an employer who understands that I am disabled and who makes allowances for my fickle body. It hasn't relieved the guilt I feel about not doing the things I feel I should as a wife, mother, and employee, but I can't live in that pit of despair. It will eat you alive.

So, I am trying to make the lemonade from the lemons I have been dealt. It's because I spend so much time trying to put on a positive front, that people don't understand my pain or the fact that I am truly disabled, but is that a bad thing?:confused: I don't know, it works for me AND against me. I'm just lucky to have this forum to go to when I need encouragement and information and compassion.

I agree that there shouldn't be any distinction between cancer pain and non-cancer pain. Pain is Pain:mad: Suffering is suffering. But I think many of us triumph over the pain and I think it needs to be celebrated.

We all need hope. We all need to have a purpose. We all deserve to live our lifes and make the most out of each day.

Am I a PollyAnna:rolleyes: No. I whine, I complain, I have days where I isolate myself and I take Prozac. My motto has always been "God and Prozac are my salavation" and I guess I need to add my PM to that statement, but I don't want him to get the big head;)

Today was a GOOD day! I went with my son and another couple to see SHREK III. I went to a Greek Food Festival (and yes, I have bakalava) AND I sat on a park bench in the cool breeze and watched my son play on the new slide at the park. I don't know why I was able to do it all, but I was thankful. Of course I went home and had to lay down for 2 hours, my kitchen and living room are a mess and the laundry is sky high,but I feel on top of the world.

Try and do some type of "normal" activity everyday, no matter how small. It feels good and I'm trying not to forget how good it can feel.

I hope that my words don't put you off. I am trying to build myself up and try and look at things differently. Like my 11 y/o son today said "you need to be one of those full/empty glass people Mom."

So I'm going to go get me a diet Coke and see if I can look at the glass as being full.

[Mark N]

Lea, all of us need to be built up from time to time and a common refrain is we just want to do something 'normal' to feel human. We find it where we can and it is nice to have a good day where you can take your son to watch a movie and then slide in the park. I have come to appreciate those activities more and more.

I know what you mean about making the best of your situation and how it hurts you along with helps you. It lets me get the most out of my days but people don't understand the price I pain in pain every day. It is good you have a boss that is forgiving. I hope you have a good day tomorrow and get out to do some 'normal' things again.