Your life on the net as you know it…’
Most of this will probably be stuff you already know but I just want to reiterate it
Please be very careful with the way you act on the internet…people say that the internet is impersonal and that it’s all just words…but words can mean a lot to people, and they can hurt! Under no circumstances mix your transabled life with your “normal” life…you may think you can trust someone but that person can turn and do something absolutely horrible to you. If you join a group or forum (unrelated to transabled/DPW) that someone is on that you chat with, MAKE SURE THAT YOU CHECK WITH HIM/HER BEFORE YOU POST ANYTHING ABOUT HIM/HER, even if you’re just referring to that person as “a young lady”. I am currently suffering through a lot of grief when someone joined a yahoo group I was involved in. He referred to me as “a young lady”, but being the only young lady in the group the owner linked him to me. She already knew about my transabledness, and had even registered here at ahiruzone.com. War has broken out in this group and I am not the only person who has been hurt by all this. Having my privacy blown has been absolutely awful, this has been going on for a week now!
Make sure you think about what you say to people…words are very powerful, and although u may see the net as a safe place to talk, what you say still affects people.
I may be overreacting…but if you are going to use yahoo groups, use two different profiles, one for your transabled groups, and one for your other groups, the owner in this group has been tracking another man that was exposed in this whole saga, he is rather easy to follow because he has used the same IDs for all his groups and websites.
If you think all this is bollocks please just let me vent. I would never think about suicide, but this is definitely leading me further down the path of depression.
I understand you, because I’m a wannabe. I know how much it hurts, some people just are not capable to respect the others privacy. That sucks.
Hi everyone. I’m finding this site interesting. I have been struggling with chronic and debilitating pain below the waist for a couple of years now. I’ve had a thorough ultrasound, a laparoscopy, and then a hysterectomy, as I assumed that the severe pelvic pain must be caused by my female organs. But, it looks like that was not the problem. I’ve also recently been diagnosed with Lyme disease, which is a little known disease that most doctors don’t know how to treat, or simply don’t want to touch. Lyme disease can affect any part of the body, and mine appears to be late stage. I just miss feeling healthy and normal so much, but now I am hounded every single day by severe pain, (in all my major joints, but it’s especially bad, and especially constant, in the pelvic region) and extreme fatigue. I remember the epidurals I had during childbirth. I remember how the pain went away completely. I wish I could feel that kind of relief all of the time.
I have become so weak, and pretty much housebound. If I do try and do something normal, (something that includes walking) I end up in agonizing pain, which often lasts for several days afterward. I have a friend who is also struggling with lyme disease, and she uses a wheelchair to conserve energy, and to be able to get out and experience life more. She has encouraged me to try it; so I mentioned it, and my dear brother and sister in law (who are well off financially) offered out of the blue to buy me a manual wheelchair. It’s a cheaper one, but it looks like it will work. I know that I will feel weird using it when people know that I can walk..I’m just hoping that they’ll understand how weak I am and how much I miss out on because of pain. I just want to get out from behind these four walls and experience things again. I used to be an avid walker, and I miss that. With the chair, at least I can go along on family treks again.
I can’t help but wonder, if my spinal cord could be completely severed above the area of constant pain, (waist area) would the whole area underneath become numb on the inside? I would give up the ability to walk, to control my bowels, etc., in an instant if it could mean being free of this pain. I just wouldn’t want to cause more pain. I want to be active again..even if I have to be active from a seated position..I don’t care! I would be better than lying down in bed everyday, crying from this ridiculous PAIN. 🙁
Even if such a procedure could put an end to my pain, is there a doctor alive that would do this for me? I rather doubt it. Also, I know I don’t know all the ins and outs of SCI, so I’m sure there’d be a whole new set of problems that I haven’t thought of. But, without being hampered by pain, I feel like I could take anything on.
I am on heavy amounts of strong pain meds, just to try and get by, and I know that these are very bad for me. I’ve lost so much weight and remind myself of a concentration camp victim. I want to be off of the meds so badly, but everytime the pain sets in, every 3-4 hours at least, I end up taking them..and they are becoming less and less effective. I am going to call a pain managment clinic on Monday, as I am feeling like I just don’t know where to turn. I hope that they can help me.
Any thoughts or ideas? I know that I am going to get some weird looks using a chair, esp. if they see that I can use my legs..but whatever..you gotta do what you gotta do 🙂
Thanks for listening to me! Any advice or info would be welcomed.
Tracy
@Tracy: I am very sorry about what you are going through. Chronic pain just sucks the life out because it takes over our focus.
Have they ever tried epidural? I would think that would be something that would give you a clear indication if the pain could be managed with some kind of spinal block. I would definitely make the doctors seriously consider it, it’s used for back pain routinely.
As for using a chair, does it help? If so, use it. I used a chair and sometimes I would give an explanation that it was for pain management. People actually accept that explanation readily as nobody likes to be in pain.
Good luck, my heart goes to you.
Elisabeth, thank you for your response 🙂 I had an epidural three times in childbirth, and it worked wonderfully well. I have often said that I wished I could live on an epidural..but didn’t think that would be a feasible possibility unless I lived my life in a hospital bed. Yes, chronic pain does suck everything else away, and I want relief so badly that I can’t stand it. I have not yet gotten the wheelchair, so we’ll see if it helps. Thanks again! Tracy
I found that the spinal I had in surgery took all the pain away too..is there a way that these can be used in everyday life? I am so anxious to get into the pain clinic and find out what my options are!
@Tracy: I have read your posts and your own blog with massive empathy. I have fibromyalgia, and my experience with physicians not taking 10+ pain levels seriously mirrors your own. Such non-treatment is incredibly traumatic. I so understand where you are coming from in your thoughts here. My worst affected area is my left arm, and I have completely lost count of the number of times I have thought a shoulder disarticulation would be preferable to enduring such pain.
I use a wheelchair even though I can walk. Although this is primarily for BIID, it also greatly alleviates the chronic back pain I have from a minor spinal cord injury. There is no shame in doing whatever you need to do in order to get through life. If anybody could walk in another person’s shoes, they would understand.
Thinking of you and hoping you will get back to us with whatever you find out from the pain clinic.
All best wishes,
~ Chloe