Today my friend Becky offered to take me to a mall in NJ. I went in my wheelchair and we weren't there for ten minutes when it felt like my sit bones were goign to come right through my skin. I tried walking while pushing the wheelchair....and the SI joint doubled me over. My friend was frantic but there was nothing she could do and nothing I could do except try to tough it out. We looked around the mall until it became obvious that my pain was not allowing me to enjoy myself at all.
So our last stop was the food court.There was a Thai restaurant that sold bubble tea...my favorite. So I ordered a mexican type of salad with broken up tacos on it....it came with Falafel . I took one bite and almost screamed. Itwas the spiciest thing I've ever eaten. I tried a few bites but my tongue and mouth were on fire. Terrible pain. I gave it to my friend....and she actually finished it. So I don't know if it was reallly the spices or my sensitive mouth
BTW I have RA and PsA which is why I was in so much pain in the stores.
You're talking to the right one about SI joint pain. It is a killer, I know! I'm telling you if I am in the car one way for more than 30 minutes, I am in BIG trouble! I can use a spray or rub to numb the area, but if I over do it, when that wears off, it's like ice picks!
I like Taco salads too, but unless you are controlling the spice and the hot, not a good idea!
I feel for you sister, I know it's great to play normal, but it will bite you if you're not real careful! Hope you feel better very soon!
You are so right 2akitalover, it is our favorite past time! I will forever miss the marathon shopping trips I would take my grand daughters on! Wish I had the stamina and the money to continue to do it! I really loved every minute of it!
yes 2akitalover, It was especially tragic because it was my first visit to a mall for several years. I almost never go out....even to local stores.The only one I go to is the pharmacy. I don't even go to the grocery store now that they deliver. So the only time I leave home is to go to the doctor's office. And it looks like this will be my last trip to the mall. Makes me VERY sad.
2akitalover said:
Sorry to hear about your pain at the mall. What a tragedy to be in pain during our favorite past time.
I was thinking ...have you tried Arnicare or Voltaren???
Is there a mall closer to you? Perhaps if the ride weren't so long?
Voltaren is a gel for pain, Arnicare is the same. I have a prescription for Ethyl Chloride spray which is an anesthetic, it will actually numb you, at least somewhat, and at least for a while.(even the SI joints) I still keep the ride short, and the time between arriving and leaving, and I take the can with me. The can sells for about $25.00. Hopefully insurance will pick up some of that. You do have to get someone else to spray you though.
It's no fun to be home bound, I'm very close to it myself. I don't mean to fuss you any more than I would fuss myself for going too far, too long. It's something we have to learn over time, because it's our nature to want and need to get out and 'GO'! We just have to be so very cautious about it.
I hope that you can find a way to get out again, closer. My heart aches for you that you were not able to enjoy yourself!
Yes, now that i think of it I have heard of Volteran. It seems to me that for the kind of pain that I have --that something that numbs the surface would really not be too effective. I take the highest allowed dose of Morphine and also Oxy for breakthrough pain. And even with all that I have mind blowing pain. I've had a shoulder and two hips replaced....now my other shoulder needs to be done. My hands and feet are wrecked and VERY deformed. My spine from top to bottom, is a mess with both arthritic damage and ruptured disks..many of those...and a number of fused vertabrae ....Not meaning to say my pain is worse than anyone elses...every one's pain is the worst thing in the world to them. God gives us as much as we can handle I guess. Although many times I think he gave me more than that--but He knows what He's doing. I cannot complain.
Oh, I think you certainly can complain. You have been through far more than anyone should have to withstand. I would not be fit to even be on here with all of that wrong with me, much less be as well tempered as you are!
I have been through all of the pain management shots they have in their arsenal, they really help some, but in the end, it all just made me worse. Have you had these? The best for me were the epidurals, but man when they wore off I was screaming!
I think the reason for this is that when they wore off, I discovered that I had done much more than my body could tolerate. When the pain is NOT there we have no way to know when we've had enough, unless by trial and error, so in the end, I think they did me more harm than good.
I cannot believe I'm still awake with an 11 year old still here! I'm in trouble, nothing new about that! ha!
Yes I've had steroids and anesthetics injected into my hips and shoulder....and they didn't help at all.
I had 4 epidurals which they had to abort because my spine was such a mess they couldn't get the needle in there. Finally my current pain doc went into the spine from my front to my back and got the needle in. When I woke up I started crying because it was the first time in many many years that my spine didn't hurt. I went home and cleaned the house, cooked, went shopping.....and then FOUR DAYS after my epidural, the shot totally wore off....and like you, pain was HORRIFIC ...I cried and cried.
In a couple of weeks I'm getting my SI joints injected. I am not expecting it to work but since it's my only hope, I will give it a try
I'd always berated myself for not doing things. Called myself lazy. But when the pain was gone and I worked hard and ENJOYED it--- then I knew it was simply pain. Pain that made me short tempered. Pain that kept me home, And pain that kept me from working.
So pain has stolen my life. I so look forward to heaven where I will have a new, painfree, functioning body
Have yourself a good day Susan
SK said:
Oh, I think you certainly can complain. You have been through far more than anyone should have to withstand. I would not be fit to even be on here with all of that wrong with me, much less be as well tempered as you are!
I have been through all of the pain management shots they have in their arsenal, they really help some, but in the end, it all just made me worse. Have you had these? The best for me were the epidurals, but man when they wore off I was screaming!
I think the reason for this is that when they wore off, I discovered that I had done much more than my body could tolerate. When the pain is NOT there we have no way to know when we've had enough, unless by trial and error, so in the end, I think they did me more harm than good.
I cannot believe I'm still awake with an 11 year old still here! I'm in trouble, nothing new about that! ha!
Like everyone has said, I am very sorry for what you have gone through and continue to endure. However, when I am counting my blessings (which have so many of) I ask Heavenly Father to either help or take a vacation from me for a short time. I have always dislike the quote you used, even though it is very true!!
You must be careful of doing too much when the pain lightens, I speak from great experience! You seem to be a strong person to endure so much pain and you are right, most of us here know PAIN very well, but when you are in the 'throngs' of it yourself, it become difficult to focus on anyone else. Hang in there girl, each day can be brighter and less painful!!
,Please forgive me for the negativity and the self pity of my post. I hate that expression too...(I assume you were talking about "God never gives us more than we can handle"? I don't even believe it's true so I really don't know why I used it. God gives us more than we can handle to make us run to and lean on Him.. If we could handle every thing , why would we have need of God?
Please keep me in prayer folks. I"m in so much pain I can't even see straight. Last night I went to sleep early...like 6:00. And I slept deeply because I was so worn out by what I've done lately....had two days out. I woke up and saw the sun was out but not too much and the clock said 7: 30. I was amazed that I slept for so long...I know I have to get ready quickly because the bus will be here before 8:00 to take me to my infusion. I made coffee and hobbled back in to my room. I saw my husband's car keys on the table....and I started to freak out because if he didn't go to work, I would have to find another way home from the hospital where I have my infusion (and where my husband works)...I sipped my coffee and sat in my recliner. Suddenly something occurred to me. I looked at my computer: 7:40PM
It was still the night time! I'd only been asleep for a couple of hours!! So I put my coffee down and gratefully climbed back into bed.Now I'm up and it REALLY is 4:00 AM.
My rollater is not working. For some reason the brake is jammed and the front left wheel will not turn. This has happened to me before.But actually I'd better not take it today because I know my husband will not agree to put it into his car on the trip home.
I guess I will make it with my cane...I only have about 100 feet t walk but even that seems like a hike around the globe.
well ladies....please pray that they can find a vein on me. Last time they attempted about 5 times to get a IV in and finally they all gave up and called in the IV specialist: a lady who'd worked in the NICU and also in oncology....she has dealt with the toughest IV challenges that exist. And sure enough she found one. And I still have the bruise from it - four weeks ago! I really need a PICC line or a central port....but they are too frightened of infection .....I only get those when I'm in the hospital and need IV steroids or antibiotics.
I don't mind going in for my infusion. The nurses there are so cheerful yet sympathetic...they deal with people getting infusions of chemotherapy all the time. well my friends...time for me to get moving. Have a pain free day today.
Nana times 10!! said:
Qadosh2him,
Like everyone has said, I am very sorry for what you have gone through and continue to endure. However, when I am counting my blessings (which have so many of) I ask Heavenly Father to either help or take a vacation from me for a short time. I have always dislike the quote you used, even though it is very true!!
You must be careful of doing too much when the pain lightens, I speak from great experience! You seem to be a strong person to endure so much pain and you are right, most of us here know PAIN very well, but when you are in the 'throngs' of it yourself, it become difficult to focus on anyone else. Hang in there girl, each day can be brighter and less painful!!