Pain!

[hunniebunn88]

pain!

i am so upset right now about everything about the past few days.
on thursday I started getting red blotches all over my body, but especially on my legs and on my arms by my elbows. I had started Imuran about 3 weeks before, and so I just thought that it was an allergic reaction since they were just really itchy and blotchy. The next day they were becoming so painful to touch and heat was coming through them, so I went to the walk-in clinic...waste of time. (I was the only one in the clinic so thinking that I would be able to actually talk to the doctor about the pain that I was having.) I went in and saw the doctor for a total time of 3 minutes. He looked at the patches, asked me if I was using any new detergent of have been rolling around in patches of poison ivy, and wrote me a prescription for benedryl. I had mentioned that I had started new medication and he told me that wasn't it, and it was just hives from the warm weather we have been having. I go to fill my prescription, which then wasn't even covered from my insurance because it was an over-the-counter medication, so I had went to the clinic to get something, just for me to buy it myself :ymad:
so, i took the benedryl that night, and just kept getting more blotches and couldn't even sleep that well since my arm kept touching my bed, which was sending me through the roof, awesome...
So the next morning I knew that something had to be wrong, this bad of hives problems before, so I called my Gastro. He was concerned about the blotches, and left the hospital to come to his office (Dr. Zaidi is the best ever) He looked at my arms, and when he touched around the area, I was clinching my teeth since I didn't want to punch him in the face from the pain. He then decided that he was going to take me off of Budesonide and put me on Pred for a week (8 pills/day) He knew I was completely against Pred, but said we needed to know if it was an allergic reaction. He then started talking about looking into infusions at BioAdvance, which just scared the **** out of me.
I had a lacrosse tournament starting that night, and my Gastro knew that the rubbing of the equiptment was gonna hurtttt, but I wasn't going to ditch my team. So he suggested I use pro-wrap to protect the rubbing.
The game went off without a hitch and it was my best game ever.
I didn't get to sleep until 6:30am the next day because I was just so itchy and in pain from my blotches, so I took some gravol and some tylenol 3 and tried to sleep.
On saturday, I started getting a bit of pain in my knees, but I figured I had just run a little hard, so I took some tylenol and rested until my game. As the day went on and on my knees became worse and worse after the first game of Saturday. I played my second game, and as soon as the buzzer went I just started crying in pain. I couldn't walk without help and my coaches had to help me to the room. I went to the pharmacy, and saw the same pharmacist again (biggest idiot) and was more or less saying "oh you again", but this time my mother was with me, then he started to understand I wasn't kidding. He gave me some "sleep eze" and some voltarin to rub on my knees.
Today, I could barely move, but I never told anybody because I knew that I wouldn't be playing if they knew how much pain I was in. I went and played with my knee wrapped, and in between shifts I was icing it.
As the night has went on, I have been put to bed by my mom and trying to not move my legs at all. But of course I have tried to move around and it took me 15 minutes to get up and down the stairs.
I am sorry for the vent, but it seems like nobody understands the pain that I am in, and I know deep in my heart that I am not going to be able to finish the lacrosse season, which is even worse.
Hopefully the next few days will get better...

 

[Walt]

we'd rather keep going...

Hi Ash,
Sorry for your suffering. Hang in there.
It seems many Crohnies have love/hate with Prednisone.
I found it to be a mindbending rollercoaster ride that was no fun at all.

Speaking only for myself, I have spells where I am so stiff and sore that I can barely walk.
Took quite a while to grasp that these were extraintestinal manifestations of Crohn's disease.
Due to sooo much inflammation in my body for sooo looong, I have arthritis in many joints.
It's hard to accept that some days I just cannot 'go'.(and do anything)
Somedays I can only lay on the couch and moan, and occasionally crawl to the toilet.

I would not presume to get between you, your life and your illness.
But please allow me to play devil's advocate for a moment.
Might I be so bold as to suggest that you reconsider your priorites?
Not out loud, in this public support forum, but rather just quietly to yourself.

It is admirable that you are dedicated to the team and want to play.
Few of us who sink from healthy to chronically ill are quick to embrace our new limitations.
We are our hearts and minds. We are not these physical bodies, which are just containers to carry us around.
But sometimes we must stop the show, to take care of the needs of our containers first, so that we can best serve the 'real' us.

I was defiant and in denial deep enough to refuse help or even submit to tests for diagnosis for at least a couple decades.
I kept pushing to keep living my life, unwilling and unable to see that I needed to take care of myself as top priority.
I only surrendered once painted into an ugly and difficult corner.
I fear unnecessary extra damage was done to my ravaged system.
I suspect you do not want to accept your health limits, nor putting rest and healing first.
I can see how we might get there.
I can see that I was there, and perhaps pay a high price for dwelling there.
I can see that it's possible you are somewhere in there.
Only you can say for sure...

Please think about the scope of your lifetime.
It sounds important to you, but what are a few games, or even seasons,
when compared to all the experiences available in a lifetime?
I hope you can hear me, without triggering your defenses.
I'm sick too, and on your side...

I hope you can see that your health must be a high priority in this life.
Tomorrow is promised to noone.
We cannot afford to presume to overlook illness just to keep marching.
I hope you can find a way, in your quiet moments, to accept
that you have limits, and must honour them to best serve the world and milk your life for all it's worth.
I hope you can somehow work to understand that sometimes you need to
clear your schedule, and rest and heal.

Yep, I heard your rant.
Yep, I'm sorry you had some rocky road.
But I also heard that you may be overlooking something you maybe cannot afford to overlook.
Look to see if your can avoid my own mistake.
'You can run on, for a long time, but sooner or later...'

Please take care of you.
Fingers crossed for better days,
Walt

 

[Silvermoon]

If this IS EN (which is in one of your other posts), yes it can be very painful...it sucks... I have had them so bad it was all I could do to get out of bed.

One of the things you need to remember though is, tiring yourself out is not going to make you any better.... I know how hard it is to give up the things you love doing.... I am an avid curler... and this past season I had to give it up as it was just too hard on my system to try and keep going. It sent me into a pretty deep depression, but as my hubby kept telling me... I need to be healthy to KEEP curling... if I wear myself out on just one season...I may never in my life curl again....

The same with your lacross... you need to take time for YOU once in awhile... overdoing it because you feel other people are depending on you isn't going to help anyone.....

I wish you all the best....

 

[Lisa]

I can feel for you - it sure does sound like EN...which I had multiple times.....one of the worst for me was going on a fire depatment call to stand by for a bomb squad to remove some materials.....yes, I actually do this kind of stuff even with Crohn's!.......had to spend a good half hour or more on my knees, in the heat of summer in full FF gear....with ED in my knees!.......thank goodness for prednisone - that is what took care of it for me.......

Good luck and take care of yourself! Hope you are taking the pred - if you don't see results soon, make sure you talk to your doc again!

 

[hunniebunn88]

I am sorry for the rant, I just have nobody to talk to, and I know when I come on this site there are people that are going through the same thing as me.
I have decided that I am going to take a week for myself, without any lacrosse. Need to put myself and my health first before the team. thanks silver <3
Walt- thank you for your post. I guess I should just explain myself. I have never been the person to just let something control my life, and if I want to do something, no matter how bad it hurts, I would do it. I guess now with Crohn's I have to learn there are limitations... The first time I read your post, I was becoming very defensive, but I decided to reread it many times, and realized that you are only saying things that I should already know deep down. thank you for helping me see that.
I guess it just took a midnight rant to realize I am not supergirl...

 

[Silvermoon]

lol hunnie! Good for you!

And yes, after 24 years, even I still say to myself... "Bullcrap!! i am going to do it anyway!!" and end up paying for it later.....

You are still Supergirl!!.... You (we) just gotta realize we have now come in contact with cryptonite... and gotta take it easy around a few things.....

 

[Crohn's 35]

Hey Ashley you are enduring alot of pain and I do think it is Crohn's related,I remember once I could hardly walk, wore slippers because I couldnt get shoes on. I never had pain like that, I eventually went to the hospital (small town docs) and they thought I had thrombosis, and had needles in my belly 2 times a day, on Coumadin. Then miraclously it went away. Almost all wierd things we get are Crohn's related, my doctors always tell me is so I got used to strange things, like rashes, cankers, cold sores, candidia, yeast infections, kidney stones, hair fallling out. Just to name a few. Some times medications bring them out. Prednisone is my worst drug but it works until something else kicks in. Gotta call my gi's nurse to do refills. Can't control my flares right now. :hang: sorry to vent on your thread, but yes indeed I know how you feel, we all do!

 

[Entchen]

You poor dear, I hope that you start feeling better soon and that the meds change helps.

 

[hunniebunn88]

thanks guys <3
i went to my actual doctor today, and as soon as he saw the bumps he said it was EN without me even having to say anything, which is good I guess, lol

 

[Vixx]

What's EN? Sorry, I'm newly diagnosed