Ultrasound Today on Kidneys and Bladder due to Blood in Urine

[Jennifer]

Could be nothing at all to worry about but apparently I've had blood in my urine since at least July of this year. Test was positive twice (never saw the blood myself) so now for the ultrasound to make sure its nothing bad. Good times! Wish me luck!

After that I'm seeing my Rheumy to see if I'm gonna stay on Humira or not. I'm gonna ask him to remove my tonsils to see if that helps reduce the number of times I get sick (I got sick a lot before the Humira now its just all the time). Wish me luck there too.

 

[DustyKat]

Good grief Crabby! :hug:

Sending you loads of love, luck and well wishes for the ultrasound and the Rheumy consult! :goodluck:

Dusty. xxx

 

[Grumbletum]

:kiss: Best of luck Crabby. Hope all goes well.

 

[Jennifer]

I get the results back next Friday.

I'm being taken off Humira and will start Remicade soon. '

 

[DustyKat]

How do you feel about the change of med Crabby?

What did the Rheumy say about your tonsils?

Dusty. xxx

 

[Jennifer]

He said he could remove my tonsils on the spot but he hadn't done it before. Said I need to see an ENT for that so another referral there. I'll ask my GP for one on Friday.

He didn't want to try a higher dose of Humira as it will likely just keep me sick which is not good. Also said that Remicade doesn't get as many people sick with upper resp infections like Humira does and he's hopeful that it'll get me back to feeling 100% because I did show improvement during the loading doses of Humira.

How do I feel about it? I feel like I'm running out of options. I feel like I'll eventually wind up flaring again, just a matter of when. I'm also a little annoyed that my GI is playing less of a roll. He doesn't even know that I'm coming off the Humira. He got his appointment set up a week after I saw the Rheumy. So my Rheumy is playing GI which I don't mind, I think he's pretty good at it. Was the first to tell me to stop the 6MP as it was affecting my liver and was the first to listen to me and take what I had to say seriously rather than tack on the IBS label on top of Crohn's like my GI tried to do.

Its a little weird going from the more minor drugs and heading towards the "big guns." I think I would have preferred the top down approach honestly but these meds weren't around back then. It almost feels like a flare in a way since the meds keep changing all the time and I keep feeling different due to side effects yet I know I'm not in a flare. Just with all the appointments and drugs, it feels like flare time. All I need now is to be hospitalized and it'll be like a real flare. Don't want any of that of course.

My husband doesn't understand why I'm going on these harsher meds. What do you want me to do? Go off my meds? No? Then what other choices do I have? You tell me. He's got nothing but still doesn't understand. He didn't freak out over Humira for some reason. Just freaking out cause its an infusion? I was stabbing myself in the stomach every other week.

I dunno. I'm excited yet don't like the idea cause its an unknown to me. I've never taken it before and don't know anyone personally who has. I feel like a newcomer on the forum all of the sudden.

This post was longer than intended. Hope you were bored.

Look at all the faces. I'm masking my fear with humor.

 

[DustyKat]

:lol: Good to know he has a sense of humour!

It's great that you have a fab Rheumy but a shame that your GI doesn't show the same level of interest in your gut as he does!

Yeah, I can see how you would feel like you are having the flare you have when you aren't having a flare! :ywow: I think one of the most confusing, and difficult, aspects of this disease is to feel the way you right now...clinically you are showing signs but that isn't translating into the physical symptoms, and all the while you still have to go through the motions like you are.

Perhaps he is at sixes and sevens like you are. You don't appear to be in a flare but you are escalating your treatment. I can see why he would see Remicade differently, like you say it is an infusion, you have to go to a hospital or specialist centre...it is 'in your face' and takes him out of his comfort zone. Also doing an injection at home, by you, may make it seem to him that the drug is less serious because you don't need health professionals to administer and monitor it. Just my thoughts on the hubby side of things.

Oh, I have had the newcomer feeling many a time! :lol: and keep doing whatever it is that gets you through Crabby and if that's then keep doing as may as it takes!

Dusty. xxx

 

[Jennifer]

Ya he does have a great sense of humor. I was trying to tell him one of the symptoms I was having but I obviously started blanking on what it was and he leaned forward with his hand on his chin and in a serious tone said, "Tell me about the memory loss." I keep laughing every time I think about it. He's so silly and always on his toes. I love it!

I think that's what scares me about the Remicade too. Having to do it in a specific place and be monitored while I get it rather than popping pills at home like I'm used to. I feel like and old person, don't like change.

I've got a lot of learning to do about Remicade. At least gotta learn the side effects.

In my head these make a sound.