It is bad enough to suffer pain every single day of your life, but when someone in the health field makes things even worse it really angers me. So here is what happened my boyfriend three weeks ago came down with shingles (for those that don’t know what that is. If you had chicken pox as a child then you run the risk of breaking out with a very painful case of shingles because the virus remains on the nerve endings.) he also somehow got a staph infection in part of the shingles so you can imagine he was downright miserable. After about three days we were both exhausted so I called my pain management clinic to cancel my neck injection. The nurse was pretty sarcastic and then told me she was also canceling my office appointment and at the time I was so tired it did not dawn on me what she said until like a week later so I called back to set up another office appointment and low and behold I get her again. So I tell her I need another appointment because I still needed to get my medication from the doctor so she tells me to hold and then a few seconds later she came back and said well the only time I can get you in is the 28th of May. Not wanting to argue I told her fine.
So I knew it was going to put me way past my 28 days so I tried to stretch my medication out by taking no more than two pills a day, but then it became obvious that at two pills a day it I was not going to make it so some days I took only one. Friday of last week came and I had four pills left and knew I was not making it to the 28th and between my boyfriend insisting I call his office and the Holy Spirit doing the same. In my mind I figured he wasn’t there because Friday and Saturday he is at his other clinic, but that voice in my head (the Holy Spirit I am not hearing the wrong kind of voices lol) kept it up until the pressure was so strong I couldn’t resist and finally called and this time I got his nice nurse and explained to her what had happened so she said she would talk to my doctor because he was there and would call me back. I waited for nearly three hours and decided to call her back and when she picked up she said she was just getting ready to call me and that the doctor said if I could make it there in an hour he would wait. So I called my boyfriend to see if he could leave early and praise be to God his boss let him leave.
After getting lost once because his GPS navigation was being stupid i finally got my phone out and used mine and we were closer than we thought and in minutes we made it there. I was so sure my doctor and his nurse was mad at me and was going to yell at me for making doctor wait for me. When I got there doctor came out and to my surprise he apologized to me for making me have to come in on such short notice ( government demands those taking narcotic pain medication to go into the doctors office every 28 days to get their scripts and they are not allowed to call medication into the pharmacy) so I let him know I appreciated him waiting for me. See by the time I got to Friday I was nearly 24 hours into withdraw and believe me when I say you never ever want to go through that is painful, you get terrible chills, but you sweat profusely, and for some reason my nose was stopped up, and I hurt from head to foot it felt like a toothache times a thousand all over. I could not sleep and it was near impossible to even function in small ways.
Thanks be to God, my boyfriend, my doctor, his nice nurse, and my boyfriends boss I now have my medication and nearly all the symptoms have subsided. That other nurse should be ashamed of herself being a nurse she had to know that after two years of being on a narcotic pain killer that I would go into withdraw causing me even more pain. It was also dangerous because of other health issues I have and she put me in danger just because she did not like me canceling my injection appointment. I hope someday she realizes what a mean and insensitive thing that was to do to me or any patient for that matter. Working in a pain management clinic you would think she would have a very clear understanding of the effects of pain on people and be a little more kind to people.
A friend of mine has a friend that wrote a blog post on this because she has cancer and people are always telling her how she should feel and so she inspired me to write my own version of this according to the disabilities I suffer.
If you are healthy and suffer nothing more than normal aches and pains, nothing more than the common colds and allergy symptoms, and nothing more than any of these things then you have no right to tell me how to feel. If you have never woke up in tears because your back is spasming so bad that you can do nothing but cry because you cannot move, and you have never felt as though someone was shoving knives under your knee caps and it hurt so bad trying to get up that you want to cry, and never felt as though someone was stabbing you every single inch of your spine and then all along your spine and across your lower back then you have absolutely no right to tell me how I should feel!
There are mornings that I have to literally force myself to get up and out of bed and there are days I am in bed more than I am up. Believe me when I say I know when you are being condescending and it angers me. You say you are my friend and yet you can treat me that way? How dare you judge me just because I am not bent over, twisted, in a wheelchair, or any other vision you might have in your head of how I should look to be disabled. For those that have seen how this has progressed and know the medical proof I have from doctors and yet you still treat me like I am a liar because I don’t look sick enough, crippled enough for you.
If all you have to say to me is things like “Well if you would just get up and move around I am sure you would feel much better.”, or ” Don’t you tale strong medication for the pain?” or “I don’t see how you can have such good posture if you are in so much pain.” and there are many more insensitive things people will say and even though I would never wish this fully on another person I do wish people like you could feel for 24 hours exactly how I feel barring that if you cannot be supportive and stop giving me your opinion on what I should do then just leave me alone because you have no clue what you are talking about.
I am at a point in my life and with my disabilities that if you cannot be a supportive and truly caring person that trusts me to know what is best for me then there simply is no room for you in my life. I simply don’t need a know it all that has never seen my MRI’s, x-rays, or any other method my doctor has used to determine my health and disabilities telling me how I should feel, act, and how to do things to benefit my overall health. It is not your place, never been your place, never will be your place to tell me anything. Yeah I know I don’t look sick to you but that doesn’t matter because if you love me like you say you do then you would believe me.
So get it through your head if you cannot stop saying those things then leave me alone I do not need your negativity in my life dragging me down into depression. I want people who will love and support me and love me the way I am with out doubt of how I feel because they know they cannot tell me how to feel since they have never endured body wide pain that even strong pain medication cannot fully stop.
So since the lubricating injections have worn off completely my knee is being a real pain in more ways than one. At first it was just annoying pain here and there you know like that really irritating toothache like throb, well it has me wishing for those days once again. Now when I get up I have to be really careful because more likely than not it is going to lock as soon as I straighten it out. Then I have to stand there moving my knee around slowly until I find where it is going to pop loose so I can walk. I know most every time I stand I have a grimacing face because I know it has to pop, however I also know that as soon as it does it is going to hurt.
It is to the point where sometimes I wish I didn’t have knees at all. I just want them to go away and leave me alone. Of course if that happened I wouldn’t be able to walk so I guess it isn’t a practical wish after all. Getting the injections are a double edged sword for sure though it is nice when you first get them but after awhile you start waiting for the painful shoe to fall because eventually it will and with a vengeance.
I suppose some would think that would make it not worth it, however in the weeks following the injections I can get a lot done and then I won’t have a lot to do when the injections wear off. That is why I find them worth it and I even get to sleep in my bed for two to four weeks and then it is back to the loveseat.
I tell people that are new to pain management to weigh all of your options because there are many and every person is different when it comes to controlling pain. For me it is corticosteroids, muscle relaxers, and pain medications. Some do quite well with implanted neurostimulators and can even go off of pain medications all together. These are just a few and your doctor will go over the things that he feels would help your condition. Your doctor will also likely have x-rays and an mri done to see exactly where the damage and the pain is or radiates from.
I am not sure how other states do narcotic medications, however in Texas you have to enter into a contract with you pain management doctor and in this contract you agree that you will only take the pain medications prescribed to you by him/her, you will not take anyone else medications, you will not try to get more pain medications from the ER or other doctors if you have to hospitalized then your pain management doctor will let them know what you take, how much, how many times a day, and no illegal drugs, they will do a urine test randomly every few months and if anything is there that should not be there if it is an illegal substance they will break your contract and you will no longer get your pain meds through them and will have to find a new doctor that will take you. Believe me it is not worth it to lose your most likely only source of pain relief.