Catching Our Rainbow

Hoping for a rainbow after the storm…

Unsolicited Advice

on February 6, 2013

I know I’ve already posted today, but these things come in spurts, so just bear with me :o)

Hubby’s Crohn’s diagnosis has taught me something. It seems like everyone we talk to knows someone with Crohn’s and knows the surgery, treatment, supplement, diet, miracle cure that will fix my husband. Everyone wants to introduce him to someone who has Crohn’s or lend him a book or tell him about their research or give him a doctor’s phone number. No one seems to care that we’ve actually done our own research and we are already starting a treatment plan with his doctor or that we don’t want to talk to a bunch of complete strangers about my husband’s small intestines. In everyone’s attempt to help him, they are annoying me to the point that it is actually starting to piss me off, and last night I said something to hubby: This is like infertility. The only real difference is that people are more willing to talk about it and don’t say stupid things like, “just relax” or “you’re still young, don’t worry about it yet.”

So I’m trying to find out a way to kindly tell people to shove off. Not telling people about hubby’s condition is not really an option because he is noticeably sick. He has lost fifty pounds since October and is down to his middle school weight, and people tend to notice that. He also walks hunched over and visibly winces in pain on a regular basis.

On a positive note, hubby started Hu.mira yesterday. The first time he takes it, he has to take four shots. So he injected himself with $10,000 worth of medication yesterday. I feel a little sick just thinking about it, but I’m so grateful that we qualified for the co-pay assistance which means we only payed $5 for those four shots. The nurse said he should be feeling better in a few days, and we are both hoping for an awesome placebo effect so he can feel better immediately. He did say that he felt a little better this morning, but he was still in a lot of pain.

I just want my husband to feel better. It breaks my heart to see him so weak and discouraged. Sometimes I have to hold back tears when I hear him grunt in pain. Please, please let this drug help him.


7 responses to “Unsolicited Advice

  1. Belle says:

    An excellent comparison: Chronic disease IS a lot like infertility. Unfortunately I’ve been in your husband’s shoes (different disease, same treatment protocols – uhhh, try this! Noooo… Try this!…. Ooops… THIS WILL WORK!) It’s incredibly hard and other people’s advice only makes it harder. Try and find solace in one another and do what you can to side step “helpful” advice. Much like with infertility, sometimes we just have to say that we are not in a place where we want to discuss it. I hope so much that this drug helps your husband. You all have been in my thoughts since your last post on the Hum.ira.

  2. I’m glad your husband finally got his medicine and I hope hope hope it starts to works asap!! It has got to be really hard to see your husband in so much pain. Thinking of you guys!

  3. steph50 says:

    I agree with Belle, it’s an excellent comparison. I’m sorry you guys have to go through all that. Crohn’s sucks! I hope your husband responds really quickly and really well to treatment so that you both can go back to your normal life! xox

  4. Kristin says:

    I’m glad that your husband was able to start the meds. It seems like it has been a long time coming. I hope that he feels better shortly and this treatment plan is effective.

  5. April says:

    Bingo. Good luck dealing with the know-it-alls!

  6. Theresa says:

    Fingers crossed that this medicine works! And you could always try being honest with people – thank them for the advice or thoughts and say you’ve researched and have a plan in mind, but you know who you can come to if it doesn’t work or you get frustrated.

  7. Good luck and I hope he feels better soon

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