Pain and Loss of Self Worth

Your perseverance just proves that we have to be our own advocate, no one knows our bodies like we do. My neurosurgeon has been telling me for years. He thinks I have an old on autoimmune disease. I just found out in fact that I do and it’s affecting my tendons, ligaments and joints. I have had five spinal fusions and two shoulder replacement, one of which failed and the reverse replacement, that he put in totally ruined my shoulder. I literally cannot pick anything up with an arm and have to take a pain pill every 3 1/2 hours they are building a hospital for special surgery’s in Naples so I’m hoping eventually I may get some help there . So I understand about living in constant pain. It can really really get us down to the point of being despondent. I am so glad that you have some relief and got to the root of the problem. I’m sorry that you still have nerve damage but happy for you that you have relief in other areas. . Happy for you as well,

Hi there @leeinaz. Welcome to Connect. I'm happy you've joined this important conversation, and offered encouragement. We all could use support, encouragement and understanding. Comfort in numbers, right? If you're comfortable to share more about your situation, we are here to listen. May I ask what brought you to Connect and how you found us?

Hi @charliegirl - I get the overall vibe that you are not really a self-pitying person but one that works hard at getting through each day the best you can, with optimism - like most of us around here.

The attached diagram came to mind when reading your post. Sometimes a visual helps me when I lose sight of my control fallacies. Fighting chronic pain is exhausting and because I'm in less control of my body, reminding myself of the areas I can control in my mind, helps give power back. Mindset is one of those "power tools" in the tool box. How about you? Do you have any tools that you fall back on during difficult moments or days?

Hi Rachel, Thanks for the nice note. I found this site after Googling “support groups.” I’m long overdue on doing this. I’m spending so much time alone dealing with chronic pain and haven’t been able to be social. I would love to know what others do that helps them in regards to pain management and staying positive.

in reply to @rwinney I am not sure if I have shared this link before, but this is a great article on the current topic of discussion, and after reading the article I did feel better about my chronic disease.
https://creakyjoints.org/support/coping-with-loneliness-chronic-illness/
I have lost so many friends during the past year because as my "friend" put it:
"Your appearance is shocking and the reason people don't talk to you anymore is because they are afraid you will ask them for help,"
Of course I knew she was projecting her feelings on to me, and knew with certainty when I texted her several months ago asking her if she would be available if I needed something from the local grocery store which is about a 3 minute walk. My text went ignored, and fortunately I did not need anything. And suffice to say we are no longer friends. Better.

Knowing that my appearance may be "shocking" as a result of the 40 percent weight loss, there is nothing I can do about it, presently. While many people often stop to tell me that they have noticed that I am continuing to lose weight, there are others that I know are asking out of kindness as opposed to judging me by my appearance alone. Having said this, my situation is not going to improve, and while I have an abundance of humility, my feelings still get hurt from time to time, which I suppose is natural for those of us who have a disease that affects your appearance. There are some people who I just want to slap, others hug. We live in a chaotic world where many do not know what the word "humanity" means anymore.

Last Friday I called a church that I attended for a short period of time last year in an effort to meet kind people who I hoped would accept me as the way that I am. The greeter at the church noted my slender appearance and then began flirting with me, and it was not until he began sending photos of himself to my cell phone that I reported him to the church in question. The "friend" who told me I look like Holocaust victim and who now no longer speaks to me, also attends this church. So me, being me, called the church and asked this fellow: "What are you teaching the people at your church?" I shared with him my personal experience with three of their members, and while I am not necessarily "religious", I did ask him if he thought that Jesus Christ would make such comments to me. His response was : "I cannot answer your rhetorical question." Obviously my question was not rhetorical. He could have said, "we teach our fellowship to practice the actions of Jesus, we teach them kindness and compassion for those like you who are in need of comfort."

My "circle" has grown so small over the past year, and if not for those who REALLY are my friends, I am not quite sure where I would be at this point in my life. I will turn 62 on Monday, and I found a journal that a friend gave me last year, and I read what I had written on my birthday. Essentially I wrote how great I felt and how lucky I was to have such wonderful people in my life who I can count on when I need them. However, I am not feeling great right now, and those people I thought were wonderful are no longer a part of my life simply because they know I have a chronic illness. I do not complain to anyone except my doctors, I do not ask for help unless I really need it, which is rare, and I do not sit around feeling sorry for myself. I did realize something today and that was that I have been in some kind of denial by stretching myself too far in an effort to help others, and once I began paying attention to how I was really feeling, it was eye opening. I presently am iron deficient and I hope that my lab work on Tuesday will show iron levels low enough for me to have more infusions even though I said I would never have them again. It's funny in a way, because I initially signed in this afternoon to find out more about a liquid iron supplement that someone else posted because he did not want to have any infusions, and I had forgotten the name of it. Best to all.

After having a stroke while 300 miles from home, I was stuck in a hospital.

With very little company and impaired speech, I sent emails and texts to just about everybody in my address book.

More than half never responded, then or ever. Even people I'd known for decades suddenly acted like "Scott who?"

Over the ensuing months, most of those who did respond initially just faded away.

I had been very active in my church; after about six months, they were all gone. It was like they thought I was going to ask for money, or strokes were contagious or something.

That really, really hurt, I have to say.

But that's not the point of my post. My point is that those who stayed friends have been few but wonderful, encouraging, and patient.

With their encouragement, I have started reaching out to new people, both online (like here) and in person. I joined a local stroke support group, for example.

Throughout, I have endured pain so intense that I didn't think I could go on another five minutes. Doctors have seemed indifferent. (Don't get me started on that topic.) I'll admit, I frequently prayed, "God, if Your plan is to kill me, get on with it."

Two things have helped me endure:
1. Thinking in terms of how far I've come, not how far I have to go.
2. Recognizing that many, many people would trade places with me in a heartbeat. I have much to be grateful for. (It's just that pain obscures my vision sometimes.)

I hope that is a little helpful. Hang in there. The alternatives are bleak.

@scottrl, you raise a good point on doctors' treatment. If those we rely on treat us with indifference, how do they think it makes us feel? Some doctors have been so desensitized they treat us like a number; if there is no solution they move us on; in some cases, they say ( in not so many words) we are lying to get more pain drugs, or if your doctor moves their practice or closes it and you then try a few other clinics to find the help you desperately need - you are accused of "doctor shopping."

If we had cancer instead of pain, would we be treated like that - I THINK NOT! Imagine the outrage - cancer patients treated like mud, disrespected, and denied treatment. At some point, the Government and many doctors have to realize pain is a condition we have no control over, and just because some people abuse pain medication why do the rest of us have to be treated the same way? As our population gets older, pain will be an increasing issue with an aging population. Many years ago, I told myself I refuse to live in pain and have no life, so I will responsibly manage the condition using prescribed medication so I can live a fulfilling and meaningful life. I was treated by one pain specialist who just cut everyone's medication by 25%. He said to me he did this because the DEA would be less likely to audit his books, and he would have fewer questions asked of him by the government. How is that a responsible behavior by a trained specialist yet I can see his point as his job is on the line. Two wrongs do not make it right for us!

The Government in many ways, is therefore to blame for its overreaching attitude and for looking at pain management as only the number of pills issued to a person (without understanding their condition) or how those prescriptions can be used by irresponsible people in the public. Yet in this day and age, they still allow smoking to be legal and, surprise, surprise, make money off it through taxes, yet we all pay the price through our taxes many years later as those cigarettes cause many medical issues. Smoking is a choice; pain is not; we did not choose it; it was a card we were dealt. If a specialist oversees our pain management isn't that a responsible way to manage the disease, we have? That is the way other diseases, and their treatments are managed.

If those we are supposed to trust do not treat us with the respect we deserve for our condition, how are we supposed to feel? I dream of the day pain will be measured and managed through individual data, and our treatments will then be designed in the best interests of us (the long-suffering). Because pain cannot be measured in an individual (no doubt you have all had to fill out the pain charts) like, for example, glucose levels -in many people's eyes, does chronic pain exist as a disease?

I still live in hope I will see a change in pain management and medical attitude in my lifetime.

I guess send me a Facebook friend request if you want to chat. Or not, if it is not allowed on this group. I would love to have a great support group with many doctors on board.

Hi @charliegirl - If you click the little person icon at the upper right top of the page then click the message button, then compose, you can send a private message to @snikkis1 for conversation off the public platform.

You came to the right place! On a side note- I thought maybe you may find this thread interesting - the topic is about moderation and modification and how it can help chronic pain with tips straight out of Mayo Clinic's Pain Rehab occupational therapy portion. Conversation follows with members experiences and thoughts. Maybe you'll pick up a helpful tip or two along the way:
https://connect.mayoclinic.org/discussion/moderation-and-modification-how-can-you-benefit/
With regard to feeling alone, you are certainly not alone. As you read through this thread you will find you are in good company and Connect is a positive, encouraging, safe space. Realizing that you need support was a very good step in the right direction. It's never too late to make small changes one step at a time. So easily chronic pain and loneliness can lead to feelings of loss of self-worth. Do you have any furry companions for company or special people that you like to check in with?