Why "71º & Sunny?"

I consider 71º to be the perfect temperature. Not too cold and not too hot. I also love perfect sunny days. The vast majority of days are not 71º & Sunny and yet, all days were created by God's hand and they are still gifts, even if they don't fit my ridiculous definition of perfection. My struggle with OCD has at times imprisoned me in an impossible attempt to achieve perfection. I'm now learning to love all kinds of days that don't even come close to 71º & Sunny.

Please leave me a comment below. I really want to know what you are thinking!

Saturday, April 28, 2012

More Uncertainty

Living with the uncertainty of my cat's health problems has brought some pain to my life. However, living with the uncertainty of my husband's health issues has been excruciating. My husband's flare of Inflammatory Bowel Disease (IBD) was so unexpected and so out-of-the-blue. It felt completely uncontrollable. The truth is, it was uncontrollable, like so much of life. Yes, he is in remission now, but what about tomorrow, next week, or next year? We still don't know what it was that set off the flare.

Even worse, we are not sure if he has Crohn's Disease or Ulcerative Colitis (both are autoimmune Inflammatory Bowel Diseases). Though they have similar symptoms, and both can respond to similar drugs, there are slight differences in treatment regimens, depending upon the particular disease. Not having a definitive diagnosis means that my husband may not be able to get the exact right treatment for his specific type of disease. Scarier still, my husband must receive infusions of a special medication every 8 weeks, possibly for the rest of his life. The drug is extremely expensive (think thousands per dose), and carries the risk of significant (possibly deadly) side effects. I wonder if our health insurance will continue to cover the cost of the medication, or whether my husband will develop a terrible illness as a result of his treatment. Sometimes the medication has been known to stop working for patients. What if that happens to him? There are so many frightening thoughts churning through my mind that it is hard to keep track of them.

Beyond those worries, I also have a ton of contamination issues to deal with every time I accompany my husband to Boston to get his treatments. I chose to wear my flip-flops yesterday, as I knew it would be a good exposure for me. However, it started raining, and I got worried that the rain water would splash on my feet and transfer the grime of the Boston city streets onto them. Because my husband's treatments are given in the oncology/chemotherapy ward, it can be troubling to see the suffering of the other patients. I often worry that I might be carrying some type of virus or illness, and that my presence in the ward will cause them to get sick and die. In addition, the nurse often grabs the trash can with his hands, and then without washing his hands, continues to work on my husband.

Yesterday, the cover of my take-out salad fell on the floor. The cover had some oily dressing on it, and I got worried that the oil would cause the floor to become slippery, and that the next patient after my husband would come in and slip on the oil. Of course, I had to wipe the (non-existant) oil off of the floor. This meant that my hands were now contaminated from wiping the (surely filthy!) hospital floor. I then had to go wash my hands in the scary (contaminated) hospital bathroom.

These trips are always difficult, for all of the above reasons. I do continue to improve however, and I've had some recent victories. Yesterday, in particular, I didn't even think about the possibility that I might make the other patients sick until we were literally walking out of the hospital. I did use the hospital restroom several times. One time I even hung my backpack on the back of the bathroom door (wow!). I wore my flip-flops and did not wash my feet when I got home. I drove home from Boston and I noticed that my driving anxiety was significantly lower. I'm sure this is a result of all the practice driving I have had in the city over the last few years.

So I just keep pushing forward, uncertainty and all. I keep trying to give my worries about my husband's health to the Lord. I keep trying to do my ERPs. I try to appreciate today, this moment, because it is all that I am certain about. I also try to be grateful for what I do have right now. Right now, my husband is in remission. Right now he feels great. Right now the insurance company pays for his medication. Right now he has had no side effects. Right now he is waiting for me to eat lunch with him. Right now, I think I'm going to enjoy some time with him.

P.S. If you'd like to learn more about the Inflammatory Bowel Diseases, namely Crohn's Disease and Ulcerative Colitis (not to be confused with Irritable Bowel Syndrome [IBS] which is a completely different type of illness), please visit the Crohn's and Colitis Foundation of America.

18 comments:

  1. Sunny, you are a very brave lady and I am really impressed with all you accomplished..I love that you hung your backpack on back of the bathroom door. I have to do that in airports sometimes because it's that or the floor and I figure the door is a better bet.
    I am so sorry your husband has this illness. My best friend in NJ has Crohn's. I got to do one of the national walks one year with her and it was such a great experience and made me feel like I really did something worth while.
    Of course you will worry, because you love him but you are also not letting worrying get in the way of spending time with him. My prayers with you both.

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    1. Thanks for the prayers, Krystal Lynn. I really appreciate it. Thank you also for doing the national walk. I actually haven't done one yet, though I'd like to.

      I would definitely take the door over the bathroom floor too! Public bathrooms are always a tough thing, but I just keep practicing and it is getting easier.

      Your encouragement is much appreciated.

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  2. Sunny, I am so sorry about your husband's health problems! You describe a lot of uncertainty revolving around the disease, and I know that cannot be easy.

    I think you are doing an awesome job dealing with it. You are not letting your fears get in the way of being with him and staying with him as he gets his treatment. You are putting him ahead of your fears, and that is a beautiful thing.

    I like that you hung your backpack on the back of the door too. I remember one time, a long time ago, I didn't want to put my purse on the public bathroom floor. I can't remember if there was a hook on the door. Anyway, i hung my purse around my neck while I used the bathroom. And I carry a lot of stuff in my purse. Can you believe that?

    Thank you for the links to more info about IBD.

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    1. Oh Tina, I am laughing so hard right now! I have done the EXACT same thing with my purse, and I've done it more than once!! There were even a couple of times I accidentally slightly choked myself because my purse was heavy and the strap got tangled around my neck. But my hands were dirty of course, so I didn't dare touch my purse straps to adjust them. Then I also had to figure out a way that I could make my way over to the sink to wash my hands while not looking stupid with this purse hanging from my neck. So I kind of wiggled my arm through the straps (without my hands touching them) so it didn't look weird while I was at the sink. Oh my. I sure would not recommend this method to anyone else - it's rather dangerous. ha ha ha Sometimes I think I really am crazy. : )

      Love can be a great motivator. So very many times it has been the reason for my pushing through ERPs. I think it's important to use any thing you can to give you the strength to get through. What we won't do for ourselves, we can often do for others.

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  3. Good for you for facing your fears. I'm impressed at hanging your backpack on the bathroom door - I've come a long way in my OCD recovery, but that is still something I'm not willing to push myself to do yet. :) Way to go!

    As far as your husband's medical issues, I know this won't solve everything, but have you considered switching over to a whole foods, plant based diet that's low on the gluten grains? That type of diet has really benefited me with my OCD, and I've heard countless stories of how it's helped others with their various medical conditions. Not trying to push anything on you, but it might be another tool in your arsenal so you don't feel so panicky and not in control.

    Anyway, thanks for your post and for keeping it real. I love hearing about your struggles and triumphs.

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    1. You're very kind, Shana. Thank you for the encouragement. You might not be able to put a purse on the back of a bathroom door yet, but I bet there's stuff that you do that I can't do yet either.

      You know, that's a good point about changing your diet to help with OCD. I suspect my bad diet (and it really is bad) doesn't help my situation. I'm completely addicted to carbs. In fact, I've finally decided to go back on a diet tomorrow. I use the word diet, but I know it's really supposed to be a life change. One thing I know for sure is I absolutely have to cut down on the sweets. We'll see. One day at a time I guess!

      I love reading about your life too. : )

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    2. Good luck with the "diet". That alone can amp up the anxiety and stress level. I'll be rooting for you!

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    3. I'll take all the "rooting" I can get! : )

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  4. Good job with the flip flop and bathroom exposure! I'm sorry to hear that your hubby has been ill though. You both are in my prayers. God is still in the business of miracles. He healed me of my Graves Disease and I know He has the power to heal your hubby as well. I like how you said for now you will focus on the right now. Keep up the positive attitude kuz it makes a huge difference! :)

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    1. Wow, that's awesome about your Graves Disease! I know that is a serious autoimmune illness too.

      I totally agree, God is still in the business of miracles. Actually, my husband's incredible response to the medication has been nothing short of a miracle. In fact, my hubby's GI specialist said that his response has been about as good as it could be. Many people don't always respond that completely. But I sure wouldn't say no if God decided to take his IBD away completely.

      You're right - a positive attitude does make a difference. Sometimes, I just have to "set" my mind on how I want to look at something. It does take a lot of effort, but I often feel much better.

      Thanks so much for the prayers.

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  5. Great post Sunny! It's so true that we have to live with uncertainty in so many areas of our lives, and you gave so many great examples of things that are hard for us OCD'ers on a daily basis. I used to obsess A LOT about my health, and then, for some reason that "went away". Great job on the exposures, that's what will keep you ahead of the OCD game.

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    1. Hey POC! Thank you for your support. It's weird, isn't it, how OCD can morph? I've had that happen too. For a long time I can worry about one particular thing, and then it seemingly doesn't bother me any more. Strange.

      Yep, just gotta keep working those exposures. I know it has to be part of my lifestyle.

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  6. Sunny, I think you are amazing. I am familiar with Crohn's Disease as I have family members and friends with the illness. Of course it's worrisome, as is any illness or disease that affects the people we love. I think you are handling things great, and taking things one day at a time (as if we really had a choice) is the way to go. We need to focus on NOW and enjoy and be thankful for what we have. Thanks for that reminder.

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    1. What a coincidence, Janet, because I think you're pretty amazing too! I am truly sorry for your friends and family that struggle with Crohn's. It is certainly a life-changer.

      I love when you said, "as if we really had a choice." How true. Why do we keep living as if we DO have a choice? I can say one thing for sure. I'm tired of fighting the future.

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  7. I am so sorry for all you are dealing with.

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    1. Thank you, Elizabeth. We all have things we have to live with don't we? This just happens to be mine.

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  8. Excellent job on coping, Sunny! I'm so sorry to hear about your husband, I'll be praying for him. But look at you, you did excellent on those exposures. Awesome job!

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    1. Well thanks, Alfonsia! My husband also says thanks for the prayers. : )

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