Another flare, a hard lesson to learn

[dahlfacepoet]

Hi all, I've been away for a while. Mostly because I'm bad with forums. But I appreciate you all so much. Cat, Allie, Star, if you read this, let me know how you are doing. Also anyone else I forgot, like I said, I'm bad at this.

So I've been managing my pain with safe foods and tramadol... Oh tramadol. I started taking B12 and D supplements, I figured it would be a good move since I've been on Entocort. But now I'm in a flare. I felt it coming. I've been having high pain days and was being super careful of what I ate, occasionally I'd treat myself to a little bit of cheese on a burger, but that was the extent of my extravagance, especially since the night I ate green chile for the first time since my troubles I spent the night drenched in sweat but freezing. But I guess the lesson I've learned is that I can't control it, if it's coming, it's coming. I'm wondering if it will be different when I get proper treatment... I've been terrified of summer coming, the heat makes me so much worse. Often I have to strip naked when I'm on the toilet.

In other news I was able to complete a 2 week gig teaching poetry in a small town about 3 hours away. I was stressed about it, since I stopped working in January, but this was a dream gig, so I had to take it. It was hard, especially since I was staying in a B&B and the woman wanted to make me breakfast every day. I didn't want to hurt her feelings so I always slept in late to pretend I ate breakfast and throw it away. Breakfast is the last thing on my mind in the morning, and half the stuff she cooks I can't eat anyway. Regardless of how I felt, I got to change lives and teach my art, plus get paid for it... it was pretty awesome.

I am starting to look for a second opinion. My GI just seems to be too caught up on my age. Also I think I need to see a neurologist. Since January, I've had a migraine almost every single day, not to mention my legs jerk uncontrollably and I keep dropping things. I just don't know how to start. Some of you must know how to go about getting second opinions, where should I begin?

Thanks for reading and again, I'm sorry for being such a bad forum buddy. I love you all.

 

[StarGirrrrl]

There is no need to apoligise hun, just glad to hear from you and sorry things are not going better.

I think from what you've described you do need to see a neurologist, do see your GP soon and get a referral!

As for a second opinion on the GI front, you could look at your current Hospital and ask to be transferred to a different GI there, or even be referred to another Hospital and GI department all together.

 

[dahlfacepoet]

Ack! I don't even have a GP! I'm so lost!

 

[Cat-a-Tonic]

Hi Dahl, I'm still here! Glad to hear from you although not glad to hear about the flare. I'm assuming your GI knows about the flare? They're not willing to try anything stronger like pred, even short-term, to get things under control?

As far as getting a second opinion or a neurologist, go back to your GP and ask for referrals. Daily migraines aren't good and your GP might be able to run some tests and/or prescribe something for that - my GP wrote me a script for generic Imitrex (although I don't get migraines very often nowadays, thankfully). If your GP won't give you a referral for whatever reason, I believe you can also call your insurance company and they might be able to set something up for you with a doctor covered by your plan. My hubby once called that nurse advice line 800# thing, and the nurse there was able to set him up with an appointment for a doctor in our area too. So hopefully one of those options will work for you. I'd start with the GP and go from there.

And for what it's worth, I have NEVER been a breakfast person. Solid food before about 10 or 11 AM does not sit well and I have no appetite either before that time. I can do an Ensure or similar type drink in the mornings but that's about it (I have to eat 3 meals a day because I take Asacol 3x per day and it can cause nausea on an empty stomach, otherwise I probably wouldn't even have a supplement drink in the mornings). I have to be awake for at least 2-3 hours before I can stomach anything solid. And I've always been like that, even before I got sick with this IBD or whatever it is. I can remember being a small child and my parents always told me that breakfast is the most important meal of the day so I HAD to eat, and they would sometimes force me to choke down a cup of yogurt or a muffin in spite of me obviously not wanting it and also obviously not feeling well later. Most important meal, my inflamed behind! So I totally understand you throwing away your breakfasts, I would have done the same thing.

I hope you can get through this flare, get some relief, and get some answers especially regarding your newer symptoms. Please do send us more updates when you find out more, and feel better soon! Big hugs to you!!

 

[Cat-a-Tonic]

Oh dear Dahl, I must have been composing my message and didn't see your response to Star about not having a GP. In that case, first and foremost, get a GP! Do you have insurance? If so, call your insurance provider or look on their website, they should have a list of which doctors they cover and who is accepting new patients, etc. Do some googling to find a good GP once you get a list like that. I found my GP online years ago, I found a list on my insurance's website and only one doctor was taking new patients at the time or something like that. I didn't google or anything but just lucked out and got a good GP who I am still with 10 years later. So anyway, find a GP first and then get a referral. How did you get your current GI, you must have gotten a referral from somewhere? The ER, maybe? (My hubby got a urologist referral by being diagnosed in the ER with kidney stones.) If all else fails, do whatever you did to get an appointment with your current GI.

 

[dahlfacepoet]

cat, I was thinking getting GP would be a good start. Thats a good idea about my insurance, I'll do that. I got my GI referral from a surgeon who I only saw once, who I was referred to by mt gyno. when i got sick my gyno was the only place I could go.