I feal that if I had as many needles sticking out of me as I've had stuck in me, over the last 11 months, I would look like a porcupine. Some of the injections have been understandable (labs, infusions, anti-biotics) however the number of anti-inflammatory epidurals concern me. Here is a list of injections that I've endured over the last 11 months: 2 epirural inj. into lumbar region, 1 in office injection (for purpose of diagnosis) right SI joint, 3 epidural injections (under x-ray guidance) right SI joint, 1 injection (under ultrasound guidance) right SI joint.
Despite all of these injections my condition continues to spiral downward. The right SI joint has been an area of concern and PAIN since day one of this journey! As I stated above I've had 5 injections into the right SI joint with little to no improvement. Actually the pain from the joint has gotten worse. It's gotten to the point that I actually purchased a walking cane to lessen the impact on the joint when walking. This was no easy decision! Numerous times over the last 3 months the walking canes have been examined and considered, however I couldn't get over the stigma attached to using one. Driving a Buick, having a handi-cap parking placard, and walking with a cane is not how I pictured my life at this stage of the game. Believe it or not I actually had a breakdown while visiting with my/our family Dr. on Friday. Real embarassing for a grown man to start crying in front of a Dr.!
Does anyone have any input into the excessive amount of injections that I've had performed on my body? Has anyone else had this many or more injections? I realize that everyone's bod is different but how many infusions did it take before some improvement was noticed when treated with Remicade?
Thanks for reading and I hope all is well. Have a great Sunday!!!
That is a lot of injections! For me, I think the combo of remicade and a stress-free vacation after my third infusion made a world of difference, but I got sick after my fourth infusion and am now off remicade and all other PsA meds until we figure out if the remicade is causing liver issues (as it does in something like 1 percent of people). I have partially fused SI Joints and will not have epidural injections due to my really bad reaction to epidurals. I have yet to look into injections as part of pain treatment.
As far as the stigma attached to canes - I don't let it get to me at all. Although I didn't think I'd need canes, a wheelchair, or a handicapped placard at age 37, I love my funky purple paisley canes, my bumper-stickered/hoop-taped wheelchair, and the freedom they give me. I'd rather be more mobile and happy than worry about what others might be thinking of me.
This is a HUGE change in you life and a lot to deal with. It's ok to get emotional about it. I think one of the biggest disservices we do to anyone, man or woman, is to think that crying shows weakness. Many times it takes a stronger person to be able to express their emotions than to hold them in .
“Insanity is doing the same thing, over and over again, but expecting different results.”
You have had how many injections with little or no improvement but yet the cane takes the stress of the joint and you are wondering if you should use the cane or not???
I don't mean to be trite but if painting purple and pink polka dots and wearing nothing but a thong in public would reduce the pain and inflammation, I'd be at the thong store after my first stop at the paint store (I'd do the paint store first so the paint would have time to dry...... AND I would publish my travel schedule to protect the public, there are just some things NO one wants to see.
The remicade will help (eventually) But even then there is a new normal. In the mean time you need to understand something. Your family loves you, yeah they are distressed about your situation BUT love makes them distressed about how it affects you not them. Your stressing about how this affects your family is not fair to them, it adds to the problem giving them the sense they aren't being "good enough" or loving enough. Contrary to popular pop psychology, there are just some things better kept to your self.
Kids are all greedy little poops anyway. Anything you do with them or for them is always short of the next thing they want. You can spend a great day or two days at a theme park and blow it all because you didn't buy them a big slurp on the way home..... That's human nature. kids just let it hang out.
BuickBoy, I hate injections, can't stand them, I kick and scream when I have to get them. I got all the inections for all the labs, tests and anything else my group of wealthy doctors could think of, it came to a point were my pain from hell doc, wanted to do inections on my wrists every two weeks, wich were not working (then it dawned on me, this guy must want or just purchased a new car, jajajaja!!!!) I have not gotten to the ramicade yet and I swear I will never. I just got fed up with all of the shots to much pain and pain killers were making me into a ZOMBIE WITH PSA. This past December my husband got me a spinning bike with a huge seat, I swar to God, I would look at that thing and hated it more than psa, I did not have the energy or the want to do it in me, so one day tired of all the meds that I was taking, I decided on giving it a try, of course I hate the dam thing, but it has helped me a lot, my knees are doing better, my hands, my legs, joints and of course my hips won't lie they are getting much better, I can't lie but I sometimes very often sit on that bike and cry my way to the end. But today I have left all of my pain meds, the only thing I take now is Humira once every two weeks and my diabetic meds, thats all. One of my favorite things that I have is my "VIP CARD" (handicap card), I call it the VIP of course because I am a very special person and I earned that special place in the parking lot, jajajajaja!!!
BuickBoy, I hope this helps you I'll be rooting for you and never stop trying, there are so many things our there that can help us out there we just need to look harder and harder every day. Try eating and drinking cellery juice it has done wonders for my inflammtion.
Buick Boy, I read your post and I really hope that things will get better for you. I don't think you should be ashamed of your cane, handicap sign, or anything else that helps you through your journey. As for crying at the doctor, that probably was a great release for you and it takes a confident man to show his feelings. Take care, Christa
Did you have to have lumbar injections for a diagnosis of PsA??? Or Ankylosing Spondylitis ? I have been on Remicade for a yr and a half.. It took several infusions until I felt something at all.. Like 6 months worth.. The prednisone helped me more than anything at first.. Remicade compounds over time and becomes more "potent" over time.. At first I was in extreme pain, now I can do pretty much anything in the world I want to.. except squat! LOL.. Hang in there!!! It'll get better... with the Remicade! I don't know about all those back injections..I personally have not had them, but I do know this, I don't want them!
Sounds like it is time to try something besides injections! Don't put yourself through it, Bud, if they aren't helping you!
I think it is only wise that you are using all of the tools you have available to you and not worrying about other people. Foget these 'macho ideas' and adapt gracefully. You will eventually have to anyway, so use the cane, use the handicap when you have to, if you always have to, then use it!
You have a great family, you know that they are with you on all of this, and that they love you unconditionally, just the way you love them.
It's a process, a tough one, but in the end we decide how tough it has to be. I think you know the answer to this already, it is in your heart! Wishing you well!
BBoy, that is a lot of jabs. I agree with what everybody else has said about using your cane and your parking tag. Just do it. Sometimes it lends you a bit of street cred when they actually see you using the aid. You are not being a wimp.
I wanted to comment on what you said about your visit to your GP:
Believe it or not I actually had a breakdown while visiting with my/our family Dr. on Friday. Real embarassing for a grown man to start crying in front of a Dr.!
BBoy, I say "right on". Yes, it was uncomfortable for you, but our doctors need to see how our conditions are affecting our whole selves. This is not just about your joints and your skin: this is about YOU. And it is very difficult. I'm sorry you are going through this, but I'm glad that you gave your doctor some insight into the effect this disease is having on you.
Hello SK and thank you for your concern. I hope and pray that all is well with you! As far as my condition: I - Am - Living - A - Life - Of - HELL on earth. Having exhausted all of the treatment options here, I'm waiting for a call from the nearest university hospital which is about an hour drive. I am getting pretty scared of what may be causing my pain, which seems to be increasing every week.
I think this is a wise desicion for you, and I hope and pray you get the right answers and some serious relief. I know the cool snap has made a marked difference in me already, but the Enbrel has helped, it's almost shot time! Mine is surely weather related, and I do not look forward to winter.
I was ready to go back to U of MD or Hopkins if the present Rheumatologist was also stumped, but I am pleased with him and will stay with him, but glad to always have the teaching hospitals an hour or two away, some from Hopkins actually come to our area but Rheumatologists are not among them.
I wish you more than luck, I wish you success! Don't give up, my friend!
I drive an hour to the university doctors, but it is worth it. Been there--anxiously waiting for an appointment with them, and I felt like you feel now. Hang in there. For a good diagnosis they might ask for more tests, so I had to learn to be patient if I want better results. My social network (family, friends, and this site) can help you wait.
I watch movies, help out at my church, go out with friends, play computer games, try to keep my brain occupied. Pain is a brain activity. Keep the brain occupied, and it hurts less.
BuickBoy said:
Hello SK and thank you for your concern. I hope and pray that all is well with you! As far as my condition: I - Am - Living - A - Life - Of - HELL on earth. Having exhausted all of the treatment options here, I'm waiting for a call from the nearest university hospital which is about an hour drive. I am getting pretty scared of what may be causing my pain, which seems to be increasing every week.