Catching Our Rainbow

Hoping for a rainbow after the storm…

Hubby

In the midst of our loss, I haven’t given any updates on hubby. The truth is, hubby is doing very well. Ever since he started taking the immunosuppressants, his pain has been declining, and he has been pain-free for awhile now. Even though we are cautious about celebrating too early, we are both so happy that he is feeling better, and I have been hoping and praying that his body is finally going into remission and this is not short-lived. Maybe this is the magic combo that will help him, and even if it isn’t, I am so thankful for the relief he is feeling now.

I’ve also mentioned before that hubby is a volunteer fire fighter and trying to get a full-time fire job. Last weekend, hubby went to Nashville and did his live burn so he is now certified to go into burning buildings and has all the prerequisites to test for his state level 1 fire certification. He was really hoping to get a job at a local department because they received a grant to hire four more full-time employees and he had more certifications than the other guys in the running, but we found out last Thursday that he was not chosen. That’s right, Thursday morning we learned that Tup’s heart was no longer beating, and later that day, hubby found out that he didn’t get his dream job. It was like being kicked when you are down. (Also, if you were paying attention to the dates, hubby was out of town Friday night through Sunday evening for his live burn, so I was on my own after we found out about Tup). For now, hubby is putting in applications at different departments and trying to get as many certifications as he can, and he is starting a new job next week. His job now is terrible and unstable so we decided months ago that he would find another one if he wasn’t one of the four. So he isn’t working his dream job yet, but hopefully he will be happier where he is going.

So, like every other aspect of my life right now, there is a lot of celebration and disappointment in the hubby department. (Who would want an average life when you can have one that’s full of extreme joys and heartbreaks?)

Be on the lookout for a post about what we are working on during yet another baby-free summer.

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Stepping back…

…from the crazy ledge.

First, I want to say thank you to all of you wonderful, wonderful bloggers who left such kind and supportive comments on my last post. I can’t even tell you how much your words and prayers mean to me. I am doing much better now, and I attribute most of it to the support and prayers I’ve received.

I’ll start with hubby. Hubby’s fever had disappeared by the time he got to his appointment, and it has not reared its ugly head again, thank goodness. Dr. GI is still trying his best to get hubby’s pain under control without surgery because people with Crohn’s tend to have surgical complications (like adhesions) that lead to more surgeries, and once you start cutting, you may never go back. Hubby’s inflammation levels were back up at his appointment which means that the pain could be from inflammation instead of scarring (which is good–scarring means surgery), and since Dr. GI really doesn’t want hubby to go back on steroids, he prescribed an immunosuppressant drug to go with his Hum.ira. The idea is that the two drugs in combination can kick his Crohn’s into remission and then we can discuss a maintenance drug (possibly sticking with Hum.ira, we’ll see). Hubby seems to be doing a little better, which is normal because his pain has been pretty inconsistant lately. I’m just glad that the fever is gone and he isn’t going to have surgery. Yet. And I’m hoping that this new drug combo will help him.

After yesterday morning’s scary spotting episode, I have not seen anymore red. The spotting turned brown and tapered off through the day and has been negligible today (maybe four or five light brown drops), and my pregnancy symptoms are still present, so I’m going to continue on as pregnant until proven otherwise. We will know more on May 23rd when we have our ultrasound. Eight more sleeps. I can do this.

After hubby’s appointment yesterday, he picked me up at work to take me to lunch and I just sat and cried in his car for awhile. I think it was good for me–I haven’t let go like that yet during this pregnancy, and it was very cleansing to release some of that fear and anxiety. Note to self: crying can be a good thing–don’t fight it.

Continued prayers are appreciated. They have really encouraged me.

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Things Fall Apart

Today is not a good day.

I’ll start with hubby. Things are not going well with hubby. Dr. GI weaned him off the steroids because it is extremely unhealthy to be on steroids long term, and he has been getting consistently worse since then. Yesterday, he had a fever (100.5 after drinking water), which is a huge red flag for someone with Crohn’s because it could suggest an abscess or an infection. Also, hubby is on Hum.ira, so if the fever is some sort of virus and not related to his Crohn’s, it’s still a big deal. He’s going to see Dr. GI today (actually, he should be in his appointment right now and I’m stuck at work), and I’m really not seeing a good, nonsurgical outcome to this.

In pregnancy land, I’ve been spotting. I’ve tried not to get too worried about it because it was very light, it was brown, there was no cramping, lots of women spot and then have normal pregnancies, blah, blah, blah. This morning, I woke up and felt good about it because of all of the aforementioned reasons and the fact that it had almost stopped completely when I went to bed last night. Then I went pee and wiped only to see bright red. It’s been brown ever since that moment but my positive, trusting attitude is diminishing at a rapid rate, and I’m starting to believe that my body is failing me once again. Please don’t tell me about your mother’s cousin’s best friend who had spotting and everything turned out fine. I know those stories. I also know that I’ve had three early miscarriages and every one of them started like this. I feel like I need to ask for more prayer, but I can’t even bring myself to do it right now.

About a week ago I was talking to hubby about all of the unknowns in our life, and he said something along the lines of “Just watch, everything good is going to happen at once. We’ll see the heartbeat, I’ll get a call saying I got the fire job, and you’ll find out you got the assistantship all around the same time. It will be so awesome we won’t even know what to do.” Instead it looks like things might just all fall apart at the same time. But let’s be honest here, that’s my life.

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Support

I’ve seen quite a few posts about how to support someone who is going through IF or loss. I think it’s great that people have written these posts because, let’s face it, we aren’t an easy group to understand and support. Statements that are meant to be helpful and supportive can be really hurtful to many in our community. I’m learning that this is not necessarily unique to to IF/loss, and being a good source of support for anyone isn’t easy.

Over the past few months, I have been struggling with how to support my husband as he deals with Crohn’s disease. My heart just breaks when I see him in pain, and I desperately want to make him better. But I can’t. I can’t heal him. I can’t alleviate his pain. I can’t promise him that he will feel better soon. So what can I do? Over the past week I’ve been in prayer about how to support him, how to be a good wife to him as he faces this terrible disease. Here’s what I’ve come up with:

  • Pray for him I pray for my husband’s health regularly. I don’t just pray that he will be healed–I also pray that the Lord will walk with him through the desert. I pray for strength to endure and peace to deal with a diagnosis that sucks. And I make sure that hubby knows that he is being surrounded by prayer by telling him when I pray for him. 
  • Serve him When hubby has bad days where he can’t really leave the couch, I serve him. I make him something to eat that won’t make him hurt more. I bring him anything he needs. I take care of things he is usually in charge of (like mowing the lawn or putting the dog up at night) so he won’t stress about it. It’s exhausting, but it’s so rewarding and giving him the opportunity to rest makes a big difference to his pain levels.
  • Abide with him Earlier this week, hubby was hurting too much to stay in bed, so he took another pain pill and went to living room and propped himself in a more comfortable position on the couch. Instead of taking my usual approach (silently bemoaning the interruption in my sleep and shutting the bedroom door so he doesn’t keep me up), I got up and went into the living room. I held his hand and talked with him to help distract him until the pain pill kicked in. I let him know that he’s not alone in this.
  • Love him I try to use every opportunity to remind my husband of how much I love him. Sometimes he will say something like, “I’m sorry you are stuck with a broken hubby” and I refuse to accept that. I remind him that I meant it when I said “in sickness and in health.” I make it a point to show him and tell him that I love him and his illness cannot change that, and in some ways, his illness has made me love him even more because it has given me the opportunity to serve and support him in a big way.

So that is how I have learned to support my hubby: pray, serve, abide, and love. And you know what? I think that’s a good way to support someone through just about anything.

What kind of support have you received that has been particularly helpful or encouraging?

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Kindness Friday

After my last post, Theresa from Journey to the Finish Line and I have decided that we need a kindness Friday. The idea is that every Friday you write a post where you are kind to yourself and fight against some of the negative internal dialogue we all subject ourselves to. People in this community can provide such great support, but the support always seems to go outward–to other people, and it is time fore us to start sending some of that support inward.

This can take lots of different forms, so get creative. Here are some ideas I have thought of if you are unsure of where to start:

  • Confront a specific lie that you tell yourself and write about it. Write about why you tell yourself this lie and why it isn’t true. Then replace it with something else–something encouraging, kind, and maybe even flattering.
  • Write yourself an encouraging letter or comment and post it on your blog.
  • Draw/paint/doodle a kind truth about yourself and put it up where you will see it. It could be as simple as one word. Post a picture of it.
  • Take some time where you pamper yourself and surround yourself with things that make you happy. Do this for no other reason than the fact that you deserve it, and then tell us about it. 
  • Write a post where you tell us all something awesome about you. Don’t be modest, brag on yourself.

I’m looking forward to seeing some of the kindness tomorrow, and on Fridays to come! Also, since I have started writing about hubby’s Crohn’s disease, I seem to have acquired a new group of followers, and I encourage you all to participate as well. A lot of my posts are directed to the IF/loss community, but I know that those suffering from a painful and frustrating disease like Crohn’s could use some kindness as well!

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Catching up

First of all, thank you so much for your support on my last post. Although I’m a little ashamed of just how bitter I sounded, I appreciate all of you validating my feelings. I guess it just goes to show that people say dumb things no matter what you are going through, whether it be infertility, loss, or even Crohn’s disease. Life lesson learned.

I have a few things I wanted to post, so I’m going to go with bullet points today:

  • Hubby has been doing much better since the ER trip. I’m learning that this pattern of feeling good one day, then having the worst pain of your life the next day, then going back to feeling better the next is fairly typical for Crohn’s. I’m also learning that the frustration, helplessness, and anger that I am feeling is normal, and it is ok to break down every once in awhile. I called a good friend on Friday and cried over the phone with her, and it helped me realize that it’s ok to be emotional and upset–that I don’t have to be an unwavering tower of strength for my husband. You would think that I would have figured this out a little sooner because I have been saying that hubby is allowed to be upset about the IF/loss that we have experienced, but I guess I’m a slow learner.
  • I got into grad school. I’m really excited and proud of myself, but I’m not doing a celebration dance just yet because I was put on a wait list for an assistantship. Which means that my school may or may not be paid for, and I may or may not get the resume-boosting experience. Right now, hubby is of the opinion that where there is a will, there is a way, but I’m not sure how we are going to make it happen without that assistance. Especially when we have medical bills piling up (just when we are almost done paying the bills from my miscarriage). It’s actually looking like we will reach our 2013 out-of-pocket limit this month, which I think is fairly impressive.
  • It’s been awhile since I’ve done an update on my lady parts, so here it is (disclaimer, in-depth period talk ahead): I had a normal period for the first time since I was on BC, and I’m freaking out about it. Ok, freaking out is a little bit of an exaggeration, but I am quite perplexed. On day 29, AF started. It just started, which I thought was weird because I usually have three to five days of spotting before it actually arrives. Then it lasted four days. This is unheard of. Mine usually last a week to a week and a half–and that isn’t counting the spotting that happens before it actually starts. I mentioned to hubby that it was over and he looked at me like I had grown another head and said, “But didn’t it just start a few days ago?” Also, it was blissfully light–it only filled my diva cup about a third of the way every twelve hours (as opposed to completely filling it every six to eight hours). Apparently, this is what “normal” periods look like, and I would be ecstatic if I wasn’t so weirded out by it. Maybe it’s a sign of good things to come?

Those are the biggest things happening in our life right now. The most important thing is that in the midst of everything that is going on, I’m still feeling very hopeful. I just know that things are going to work out, even though I don’t know what it will look like. I’m frustrated, tired, and impatient, but I’m hopeful. I think a lot of that has to do with the beautiful weather we’ve been having–it just lifts my spirits. Spring is trying its very best to settle into East Tennessee, and I am beyond ready for it! It also has to do with the amazing amount of love, prayer, and support we have received from our new church. I hope to post a little more on that soon, so stay tuned!

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People suck. And so does Crohn’s.

I think people are misunderstanding me when I say hubby is getting better. When I say hubby is doing better, I mean he is only having pain three days out the the week instead of every day. I mean that his pain is tolerable and not causing him to walk hunched over or constantly wince in pain. Yes, he is better, but only when you compare his pain to how he felt before Hu.mira. I think people have this idea in their heads that he will go to the doctor and start on this magical medication and never have any more pain or problems, and as much as I wish that were true, it isn’t. Crohn’s is a lifelong disease that is painful, exhausting, and discouraging, and we were reminded of that this week.

Wednesday evening, hubby was having some abdominal pain. Nothing too bad or out of the ordinary, but it was bad enough that he decided to sleep on the couch so he could be propped up in a comfortable position and he wouldn’t keep me up by tossing and turning in our bed. This is not unusual. He usually sleeps on the couch about two times a week due to pain, but we consider it a big improvement from having pain every day. About 2:40 he came into our room in extreme pain and said that he needed to go the the ER because he couldn’t handle it anymore. Let me just stop and say that my husband is a tough guy with a fairly high pain tolerance who has never gone to the ER because of his Crohn’s pain, so when he said that he was in the worst pain he has ever been in, I took that very seriously. The doctor at the ER ordered some blood tests, and they gave hubby some good pain medication (can I just give a shout out to modern medicine and dilau.did?) while I sat and told hubby how much I love him and to stop worrying about how we are going to pay for the ER trip (we’ve almost met our out-of-pocket for the year because of all of hubby’s tests). Thankfully, all of his tests came back normal, which means he isn’t bleeding internally, he doesn’t have an infection, and he doesn’t have an abscess. The doctor said that he was just having “acute flare up pain,” and gave him a prescription for some pain killers and a steroid pack. We left the ER around 7:30, and I had to call one of hubby’s fire buddies to help me get him in the house because of the pain killers (they gave him some good stuff). That afternoon we called his GI doctor and let them know what had happened, and they said to go ahead and take the steroids.

This is our life. This is what Crohn’s looks like. Yesterday, one of our good friends who also has Crohn’s had to have surgery despite the fact that she was fine when we saw her a week ago. The truth is, even when you are doing better, you can have a night like we had Wednesday, with the worst pain you have ever felt in your life.

Why am I telling you this? I know that we complain a lot about the stupid things people say to infertiles, and I posted a little about some of the things people say to someone who has Crohn’s, but some of the things people have said lately INFURIATE me. It usually begins with someone hubby hasn’t seen in awhile commenting on the weight he has lost and how great he looks. That’s fine. By all means, please boost my husband’s self esteem by telling him how great he looks. Then we usually tell this person that hubby has Crohn’s disease and that he lost 50 pounds in 3-4 months because he was in too much pain to eat. How would you reply to this? Because the most common response is, “Well, at least you look great.” One girl actually had the nerve to say that his diagnosis must have been a huge blessing in disguise because he was able to lose so much weight.

Seriously?

What kind of screwed up culture do we live in? Since when is an extremely painful and life-long intestinal disease preferable to being overweight? Also, let me just say that my husband is 6’4″ and was 240lbs in November. Now he is 190lbs. So it’s not like he was morbidly obese, and he was in good shape (as in, he could run two miles in full fire gear). I would rather my husband be fat than deal with this disease because he can lose that weight–he can never lose Crohn’s disease. And it sucks.

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Hubby

I mentioned this briefly in Friday’s post, but I believe it deserves its own post. Hubby is doing much, much better. I am beyond grateful for all of your encouraging words, positive thoughts, and prayers for my husband. He is my absolute favorite person in the whole world, and it was killing me to watch him suffer. He still isn’t 100% (honestly, we don’t really know what his 100% will look like now), but he is able to sleep through the night and go to work. He is also able to eat fairly normally now (read: able to eat more that plain chicken and couscous). It is wonderful to be able to goof off with him, and I love that he is my playful husband again.

On a different but related note: Hubby is now officially on the volunteer list for the city fire department. This may not seem like a big deal, but it is. Right now hubby is part of a volunteer department, and he has been working very hard for the past year and a half to get all of his certifications so he can join a paid department and be a full-time firefighter. The first step to joining the city fire department is getting on the volunteer list, and they actually do all of their hiring directly from this list. So this is basically his chance to show them how much he has learned and how dedicated he is to being a firefighter (which I can tell you that he is pretty darn dedicated). We still don’t know how long it will be before they will hire some of the volunteers, but this is a big step in the right direction.

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On Being Positive

Lately I’ve had a few people comment on the blog and IRL that I have such a positive attitude about our IF and loss journey, and it has seriously taken me by surprise. It has made me step back and look at myself. Am I being more positive?

I think I have mentioned before that I am a wallower. I usually just wallow in my sadness and desperation. I think up worst-case scenarios in my head and live them over and over again. I’m not usually very good at seeing the silver lining and moving on, but I think that maybe there has been a small shift in my outlook. I believe that there is always room to grow, and I’m definitely not where I want to be, but I have been feeling less “OMG, the world is crashing down around me” lately.

I believe there are many contributing factors to this. The first is that Hubby has been very sick, so TTC has taken a back seat. His diagnosis has been a huge distraction for me. It has also caused a bit of a role reversal in our relationship–I am now the encourager who tries to stay positive when hubby is hurting and discouraged, which is a huge deal because I am learning that I am strong enough for that role. There was a time in my life when I never would have believed that because I am always the one who falls apart while hubby has always been the rock in our relationship. Hubby’s illness has also put a lot of things into perspective, and I have learned that there are things I care about much more than having children. I can honestly live child-free as long as I have my husband, and learning that has made nurturing our relationship my biggest priority. I can’t nurture my marriage when I am in the throws of despair.

Another reason I think I have been feeling more positive is the fact that we have a solid back-up plan. I know that, one way or another, we will have a child in our home in the next year or so, and that takes some of the pressure off. It also gives me something to look forward to, work towards, and get excited about. If I get pregnant again and have another miscarriage, we won’t be back where we started. Instead, we will have another adventure to start that will hopefully have a happier ending. That takes a big weight off my shoulders and keeps me from despairing about whether or not we will ever be parents.

I also think a big contributor to my better outlook is the months that I have taken off to heal. When the midwife suggested a six month break, I couldn’t believe it. I know she suggested such a long break so that we could have some emotional healing and not escape the healing process by jumping right back into TTC, and I can finally see now that it was a good recommendation. In the past few months, I have learned to face my pain and slowly put the pieces back together. I was helped along the way by a few close friends, some powerful prayer and worship sessions, openness between me and my husband, and the Bitter Infertiles Podcast.

I still miss my babies. I still look at the calender and feel a deep sadness when I see my due dates pass. I still wonder if I will ever be able to carry a pregnancy. I’m still scared about the uncertainty of our future. I think the biggest difference is that I have learned how to hope again, and I am going to hold on the that hope as hard as I can.

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Unsolicited Advice

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.

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