Relationships
What do you do when your significant other declares that they can't deal with you being sick?
I've been on humira shot once a week, for several months now, and have been feeling well enough to ho back to work. Two weeks into it, my insurance makes a mistake that costs me a timely refill, and I missed my dose last Fri. Yesterday I passed out at work in the middle of helping a customer and went to the ER. Massive dehydration, but nothing else wrong with me. I get fluids and go home.
My husband had to shut our business down and take me to the hospital and then home.
Granted, he wasn't mad at me but at the pharmacy and the insurance company. But still. He made it clear his life was short (he's 64) and he couldn't deal with me being sick, and told me to fight harder to make sure I don't miss another dose. I don't know what else I could have done.
Hi
, I am so sorry that you are going through this. It is hard to deal with illness already and then relationship troubles often add to the stress.
I think it's important for your husband to come to terms with the fact that this is a chronic condition and it may out of your control some of the time. For example, I generally am doing well on my medication, but every so often I have bad days - and my husband and I just have to accept this and alter our plans for the day. I don't think it's necessarily appropriate for your husband to say that because you're sick you need to do better, and I hope he realizes that you are doing the best you can--and that your life is also being affected by this illness, even more than his is!
That being said, being a caretaker can also be difficult. I wonder if he would be open to going to therapy or some kind of group where he can discuss his feelings? That way he can open up and feel validated in his own fears and pain while also being a supportive husband to you.
Ultimately I don't think relationships should cause us more stress. Communication is key and so is empathy on both sides. I hope that he is able to provide this to you. Please let us know how things are going. -Eshani (IBD Team Member)
Hi, and thank you for your help and advice. It's been a few days since, and he has apologized for what he said. However I know that at this time, he's under much stress and I wish to help him. He's not one to talk to others, not even family, so I have to wait for him to speak to me. It's just here lately he's shut me out.
He meant what he said, and while he knows it was inappropriate, it is what he felt at that moment. While it hurts, I can't help him if he doesn't speak it. Cause he won't talk to anyone else. If there was something I could have done differently with the insurance Co and the pharmacy, that's ifo I could use.Hi there! I am so glad that he apologized. That is very important! It sounds like there is a lot going on with his emotions and your emotions too. I hope that you can both continue to communicate, either with a counselor or on your own! Sending lots of love! -Eshani (IBD Team Member)
Have to stay hydrated with this disease especially if you are going to the bathroom a lot. Your husband is a jerk. Sad that even happened.
I'm not sure how you missed a dose. I can't speak for your pharmacy or insurance but mine would send a month supply to me. I would then reorder in the middle of each month. So the very least I would be covered no matter what. I assume your in the states, since you mentioned insurance. I deal with CVS Speciality pharmacy. You can (I could) even set up auto refills with this medication. Not trying to harp on you but maybe look into your pharmacy and see if they do auto refills. Also find out what day is the earliest you can refill your prescription, your insurance should be able to tell you that. Mine is the middle of the month, so about the 14th or so when i was doing monthly injections. Now that im on 8wk injections, Stelera, its about every 4 wks I'm allowed to order.
I understand if your Dr dropped the ball on the amount of refills cause that happened to me also. But my pharmacy usually requests the refills for me but I do make the calls to the Dr to make sure they emailed/faxed the paperwork over in a timely manner. Make sure or see if your Dr will put down a year worth of refills, makes things easier for us. CVS makes it easy for me to see how many refills I have so when I get down to the last months or so of refills I make my calls to the Dr office. Unfortunately, we are our own advocates for everything. For me I found out I can't rely on others even if a system like CVS is pretty much automated. There's some human interaction and it's up to us to make sure everything is in the works.hi Lowrider, thank you for your advice.
My insurance requires a specific specialty pharmacy, Accredo. So this is how the "chain of command" works in my rx process. My Dr puts in the prescription with a local specialty pharmacy, and they work with both my insurance and Accredo. They at least, get things done. Accredo on the the other hand is famous for not being communicative with either. They would rather a rx sit until I call the local specialty pharmacy to deal with it. Accredo also doesn't talk with me to tell me there is a problem, so I'm left to sort it out. As for having a years worth of fills, well humira was new for me, and changing the timing of the doses sent Accredo incommunicado. My Dr thought once a week dosing would take care of my lingering issues. Did it for three months. Nope. When I was on the two week dose, I would cycle between one good week and one bad week till my next dose. Well, that only got condensed within the week.
So we switched to Rinvoq. That caused another spasm of silent pain from Accredo, who took a month to finally get that rx filled. And again, now that I'm going on the stepped down dose of 30mg. Through it all my local specialty pharmacy has been a gem, giving Accredo the appropriate kick in the rear to get things done. I wish I could use them.
Maybe when I get a stable dosing, I won't have such an issue with them....then again....
Oh wow,
, that sounds incredibly frustrating! All the hoops that people have to jump through to get the medication or the doctor visits or other health care that they need are so frustrating and unnecessary. I really wish it was easier to access the things that are needed! Thank goodness you have such a helpful local specialty pharmacy to help you manage and to get that other pharmacy the kick it needs. -- Warmly, Christine (Team Member)
Hi
. I think I may bring a different perspective. I happen to the husband of someone with a severe form of a different autoimmune disease (my wife, Kelly, was diagnosed with juvenile rheumatoid arthritis at age two and has used a wheelchair since her teens). One major difference with our situation and many couples is that Kelly's disease was a known condition long before we met, but I do think the learning how to manage and accommodate is a constant. I believe communication is a necessity and recognizing that every person brings unique talents and issues to a relationship. We know we have to do things different than other couples to work for us. We joke that Kelly handles IT and I get things off tall shelves, but on a more serious note we structure our lives to fit our needs, which includes acknowledging and then working to include the necessary accommodations for the disability. I won't pretend to have definitive answers, but experience says that no single event creates a problem, but rather a series of things unaddressed. I hope you can manage to get your husband to open the lines of communication. Please know that this community is here for both of you. Wishing you the best. Richard (Team Member) thank you. I appreciate this. 
I read through all the responses here, and I think you have received some thoughtful advice. Let me throw in a little more perspective: Those who don't know what it's like to have an IBD, just don't know. Your husband was caught off-guard with needing to get you to the hospital. Maybe he was stressed by closing down the business for the day. Or maybe he had other stressors impacting him. His comment to you was obviously not "heartfelt." It was "in the moment," and his worry about you caused him to lash out negatively. That may not make sense, but I get it. My husband has no idea what it's like to walk in my shoes. Does he see me in pain and running to the bathroom? Absolutely! But ultimately, no one understands unless they suffer from UC, too. So, in my heart, I think your husband was probably more afraid than he was mad at you or the pharmacy. Sometimes, our words come out wrong when we're in the middle of conflict. Now, that your husband has apologized, at least he recognizes where he was wrong. Moving forward, maybe he'll be more careful the next time an emergency occurs. When we know better, we [should] do better. Thinking of you... Traci, UC-IBD Team Member
