"I'm fine"

I am not a morning person yet here I am, on a Saturday morning at 6am, watching the sun come up on a foggy morning in our sleepy little town. I've been up since about 4am, but stayed in bed, hoping to fall back asleep. I gave up.

I haven't talked much about what's going on because it's just easier not to. When you have a chronic illness, it's just easier to put on a smile, act happy and say you're fine. People might say they do but no one REALLY wants to hear about all the crap you've got going on. It's so SO much easier to pretend it's all good. The how are you question is so much easier to answer with "I'm fine."

Besides, I don't want to be that person anyway. I don't want that look people give you... anyone with an illness knows that look. They I feel so sorry for you look. That uncomfortable I don't know what to say look. But at the same time, not talking, acting fine... it's EXTREMELY lonely. Because, if everyone thinks you're fine then really, you have no one to talk to.

2013-14 was so hard and I didn't handle it well. I alienated people, the friends I did have I almost lost and/or pushed away. I am trying to exact opposite approach this time from last time something major was going on and it doesn't seem to be working well either. Both my ways of coping leave me feeling completely alone. While I am sure I could talk to my friends about this, I guess right now anyway, I don't really want to (and yet I do want to at the same time). I don't want to be that friend again.

Regardless I do feel like people are keeping their distance. Whether it's because they don't know what to say or act or just... I don't know... don't want to deal with me at the moment. Hell, I don't want to deal with me. I need the normalcy of those relationships though. But perhaps, it's not them it's me. I have been quiet as well. I have been keeping my distance as well because I don't want to be that person again. I'm afraid that I'll be a downer and who wants that? No one wants to be around me when I am upset, sad, angry, annoying.

Right now my illness isn't getting better. Not only is my Crohn's severe, it's aggressive. It's flared up, drugs are not working and the doctors seem to be at a complete loss. It's become "extremely concerning." It's scary. Very scary. You can live without a large intestine but you need your small. I'm scared of what will happen if this doesn't come under control.

That's the first time I've written that and I have not said it out loud yet.

I've been throwing myself into my kids lives more than ever right now. Creating memories with them and making sure they have a wonderful summer. It's hard on me because it wears me out. Fatigue sucks. But, they seem to be enjoying all the fun things we've been doing. Creating forts out of boxes, going swimming, checking out the ever so cheesy - straight out of the 70's - Dinosaur Land. But I think too, it's hard for them. Not the fun activities but the fact that mom can, in an instant go, from fun, happy mom to "I don't feel good and I am dead tired" mom. And that second mom, she's grouchy. She yells. She has like zero patience. And then she feels like a crappy mom because maybe she's yelled at the 3 year old for doing something 3 year old's just do because they're 3.

My husband has yet again been patient, understanding and just there for me. I talk to him but at the same time don't want to worry him too much. Plus he has the tendency to do what most men do. He tries to "fix the problem" when really all I need is someone to listen.

I just keep plugging on. It has to get better because it just has to, the alternative is not gonna work for me. I'll just keep putting on that happy face, act like all is well and answer with "I'm fine."

Fight Song

A good song. Kind of spoke to me this morning I guess. I've been up since 5:45am (although my UP band says differently as I was hoping I'd fall back asleep)

I was thinking a lot while trying to fall back asleep. I've come a long way since my first hospital stay in October 2013. I went through many hospital stays, 2 surgeries, depression... it's been a hard road for me. But I feel like I'm actually doing well now. I've gotten used to the ostomy (still not a fan but who would be). I'm happier. I know my family and friends see that.

I have more to this journey. Another surgery that could really go either way in terms of successfulness. How will I handle it this time if things don't go well/I'm in pain/etc? I feel like I'll handle it better this time, at least I hope I will. There have been changes in my life overall since the last time so I feel like I have the support and means to get through whatever is thrown my way. I've got more fight in me this time because I know what I DON'T want to be like. That me from before - I don't want to see her again, that's for sure.

As long as the tests come back with approval...

...I'll be going for the reversal.

There are risks but I just have to try. I have to give it a shot to have a life without this bag. I am used to it now, it's my new normal but... how great would it be to go back to life without it?

The doctor wouldn't tell me much, she was very vocal about the cons. I think she had to be. They'll never guarantee you the good outcome...

This past week, I met a older nurse at the local museum. She was showing my son a doll called the "Organ Annie" and when they go to the intestines, he told her... oh, my mom doesn't have that one, her poop comes out of her tummy now.

I was slightly embarrassed but the older nurse was very interested and started asking me a lot of questions while the younger nurse kept talking to my son about the doll and all his insides.

Come to find out... this very nice older nurse had been a GI nurse for almost her entire career. She told me she knew many, many patients who had my exact surgery. The "no colon reversal" she called it. She went on to tell me how more of the patients she saw were happy with their decision to have the surgery. How most went on to lead very normal lives and once their bodies adjusted were so happy they decided to take the risk.

She wished me luck, told me I was young and should go for it. I can always go back to this but she said she had high hopes for me. I thanked her and we parted ways.

I hope I run into her again so I can thank her again. She has no idea how much I needed to hear that from someone in the field. Someone who focused more on the positive outcome. Yes, I need to hear the risks but hearing this made me more confident in my decision to do this.

I have no idea what my outcome will be but I am hopeful it will be good.

Now I just need to get those tests done!

To reverse or not to reverse.

Met with a doctor this week in DC. We discussed the options about my possible reversal. The annoying thing about doctors is... with something like this they won't, and can't really, give you a solid answer. Reversal without a colon is really kind of a 50/50.

Things could go well, I could be almost normal again! Or... things could go bad, worse than my last flare.  And of course, every option in between. One thing we know for sure. With Crohns, my disease will act up again. Someday, somehow. I am not cured.

I am leaning to getting the surgery. If I try and the results are bad then I go back to the ostomy, the bag... for life. But... what if the results are good.  Good means NO BAG. Good means all my insides back in where they belong. My stool will never be normal again but... the rectum can take over some of the job the colon did and the output could thicken some. I could lead a fairly normal life for as long as my body allows me to before I have to return to this. This bag.

I've gotten used to the bag. I've learned to deal with what my new normal is. But, it doesn't make me like it. My self esteem, my self image - not good. I have never been the kind of girl that fits in. The one that has a group of really close friends or is... you know, in the popular group. That was never me. All I ever wanted is to fit in - and while I am far from my high school days of desperately wanting that - it's still a thought in the back of my mind. The bag makes me not normal... weird... different. I don't like it. I don't like constantly worrying about a bag leak. I worry that someone will notice when it fills with air and it is SO noticeable. I do NOT like how it feels to have a bag of your own poop hanging off your stomach.

I feel like even my friends and family who say they don't care, don't notice, don't think about it... don't they see me different? Don't they think it's gross, weird? Who wants to get close to, hug someone, be near someone who you know has a bag of poop just right below the surface of their clothes? GROSS. I have had friends say it's gross. Heck, my 2 year old daughter says every time she sees me in the bathroom "Ew, Mommy, that's gross." or "Ew, you're gross." I know she's 2...I know she doesn't know but... it hurts. BAD. When someone says it's gross... what I hear is my 2 year old... "you're gross"

I don't have a lot of close friends. Very few. I am sure the ones I do have are so sick of this. Of me talking about this. I try not to anymore - at least not as much. I don't talk about my pain anymore... I don't talk much about what I think about what I am going through because I just want to be normal. While I really want to... I want the support, the feedback, the strength of someone telling me that they support me 100% no matter what I decide... I just mostly want to pretend none of this is happening.

But, it is happening.

I've been sick a lot since I've moved to the town we live in. I've hid it well overall (aside from last year) but... it has shaped opinions of me. It's hard to form relationships with people when you not in the best frame of mind.

I haven't had a lot of my life where I've felt good or been healthy. I like to think I am pretty fun when I feel good. I love to have fun, to hang out, make jokes, be silly... my close friends, I hope, know that I am one of those people you can count on. You need something, I am there.  Maybe my life is hectic with the two littles and I may not always come fourth immediately but... you ask and I would take the shirt off my back if you needed it. I wish people here knew that about me. I wish people would get to know the non-sick me...whomever she is.

I've been lucky as far as my husband goes. I've read posts in my support groups about husbands leaving when this happens. Mine has been there for me 100% through this. He supports me, wants me well... he is amazing. He just wants me to be healthy and feel good about myself.

I've rambled as I often do with my blog posts.  So... back to the topic at hand. Reverse or not to reverse. My tests start soon to get a good look at everything I have going on. To make sure my body can handle the surgery part. Hopefully in the time it takes to complete those tests... I will have come to a decision.

My memory sucks... because of prednisone.

One of the hardest things to explain to people are the random long term side effects that come with the medications you're on all the time for a chronic illness.

One that has really affected me in my life is memory problems due to chronic prednisone treatment over the course of almost 30 years. This is a very rare side effect and generally only happens permanently when you are on a very high dose for a long period of time.

When I was 19, I was diagnosed and then went back to college, away from doctors and family. The doctor there was unfamiliar with Crohns and the treatment I should be receiving. I was on a very high dose of prednisone for a very long period of time (at least 6 months straight ranging from 40-80 mg daily). At my highest dose, 80mg for 3 months STRAIGHT. This was the time in which I gained 120 pounds in 3 months. But it also had side effects that I still have to this day - and I am now 37. Some people experience short term memory loss when on short bursts of prednisone but, those symptoms subside or even go away after they go off the drug. Because of the extent of time I was on the drug, and the extreme dose - this is a symptom I still have. I've seen a lot of studies about the effect of prednisone and memory loss (including one where it showed that it was caused by actual brain damage - yikes) and have seen studies like below which give me some form of validation as one doctor once told me - it's in your head:

Time on Prednisone when people have Short-term memory loss:

	< 1 month	1 - 6 months	6 - 12 months	1 - 2 years	2 - 5 years	5 - 10 years	10+ years
Short-term memory loss	25.44%	30.70%	4.39%	7.89%	14.91%	8.77%	7.89%

Severity of Short-term memory loss when taking Prednisone:

	least	moderate	severe	most severe
Short-term memory loss	10.71%	57.14%	28.57%	3.57%

How people recovered from Short-term memory loss:

	while on the drug	after off the drug	not yet
Short-term memory loss	0.00%	0.00%	100.00%

I hate having a crappy memory. I remember a fair bit of stuff but there is a lot I forget. I KNOW it makes me seem to people that I must just not care about what they tell me, or that I wasn't listening. I have to write down a lot of what I need to remember, even the small things. If I don't write it down, there is a fairly good chance I won't remember it. I am sure this paints me in a bad light for people who don't know me well. And I am sure the people in my life who do know me well, think I just don't listen/don't care.

The other annoying thing about it comes with the people who know this about me. So, I get a lot of "Well, you don't remember this right because your memory sucks." - I do not forget everything and it doesn't change my memory to something different. It's a very frustrating thing for me. I want to remember things, especially things that are important to my family/friends. And NO, I do not forget everything!

I want to remember important dates. I want to remember that I said I'd bring the kids for a playdate with you on Tuesday, or have lunch with you a week from Friday. But, I don't always remember these things. Please know: it's not because I don't care/don't want to see you/etc. And when I do remember too late, I feel like a colossal ass. And a lot of the time I don't know how to even approach the subject with you. So, please... be kind and understanding of me and my crappy memory. It's just another unfortunate effect of living with a chronic illness. And maybe send me a reminder of something we scheduled - a simple are we still on for tomorrow will make a world of difference :)

Good days, bad days, in-between days

Living with a chronic illness means you have good days, bad days and, what I call, in-between days. You'll never get better, not really. So, you learn to manage your disease, put on a brave face and get through each day the best way you can.

Today was… not bad but an "in-between" day. I started the day not so bad. Felt decent, but tired…even after a full night's sleep. I had pie for breakfast (what could possibly be better?) and had coffee with some neighbors.

Then it hit me. Headache, pain and MASSIVE fatigue. That kind of fatigue that just makes any small task feel monumental. My kids watched something like three movies back to back today while I drifted in an out of a pretty sound sleep on the couch. I actually even put my potty trained 2 year old in a pull up today because I just didn't want to deal with any accidents she might have. 

The fatigue was so incredibly overwhelming that I couldn't even fathom making dinner for anyone. One child had a yogurt, one had cheese, crackers and pepperoni. Neither of those things is dinner and I had been doing so well getting a healthy balanced dinner on that table every night this week. I was supposed to have gone out with the kids in the evening but the thought of packing them into the car and going out seemed like climbing a mountain. I wish that was an exaggeration.

And when my husband got home and saw how I was, he ordered us pizza for dinner. I gave up fast food and pizza for lent but I just couldn't even fathom making anything and, since I had eaten next to nothing all day, I gave in. FAIL all around today.

Fatigue days for me are almost worse than pain days in some ways. Pain I can deal with, I can work through it. I've done it my whole life. Fatigue… that's a whole different beast. You see, one of the hardest things about chronic illness is the fatigue. Fatigue isn’t being tired. It’s an exhaustion that is bone deep, a feeling that your body is giving up on you. It’s feeling that every fiber of your being is suddenly being affected by gravity more than anything else. I wake up most mornings with my head filled with ideas, plans and lists of things to do that day. In my head I am powerful and could rule the world!!! But no one told my body that. The head is willing but the body is failing.

The psychological implications of this are feelings of failure, guilt and disappointment. I worry that people think I’m lazy, that I look ok physically so why am I in bed? I worry that others will see me smiling in a photo on Facebook and then wonder why I’m saying that I’m physically exhausted and struggling. I feel guilty that the lives of my family, some days hell, most days, revolve around my illness.

Like today.

And now, it's almost 1am and I am awake. Awake with nausea, some pain and oddly enough the fatigue. Tomorrow will be a new day. Let's hope it's a good day :)

Reflecting

Last year I thought I was handling everything well. I thought I was dealing well and mentally doing okay.

Wow, I was wrong.

I wasn’t dealing well at all. I was avoiding and not thinking about it. When I was in the hospital I was so drugged up I slept a LOT. When I was home I was either drugged up or, more than I should have been,  drinking. That’s not dealing. And yes, I was in pain but the pain meds became a crutch. While I was not addicted in I guess the traditional sense… I was mentally addicted to them.  If that makes sense. Or, maybe that is a traditional addiction to them, I don’t know. I do know that when those scripts ran out, I did go to the hospital a few times to get relief when, prior to the extreme illness and surgeries, I would not have.

Let me explain.

Most of my life I’ve been in pain. Not the – oh my goodness I can’t stand up straight pain – but a…what I call tolerable level of pain. It’s always been there to the point that it’s normal to me. Like a fly constantly buzzing in your ear it’s annoying as all hell, but after a while you don’t even hear it anymore.

I was in pain a long time before I finally succumbed and went to the hospital for that first stretch of hospital stays in 2013. I waited a long time to just go and get treated. As they hospital stays become more frequent and my pain become worse, my condition became worse… the drugs gave me a feeling I hadn’t had in a very long time… NO pain. I liked it. Who wouldn’t?

I got used to it. So used to it that even small amounts of pain, that buzz from before, sent me back looking for relief. The problem was that I had gotten used to no pain at all for long stretches of time and wanted that all the time.

I was depressed. I can look back now and see I was. I was a complete mess. I was either drugged up or getting drunk fairly consistently and all the while telling people I was dong well and dealing well. Not sure how many people believed that but I think many did. I projected the image of a strong person, dealing with a really shitty time and doing it well. Maybe there were parts of me that were strong but I feel like I was weak.

Not to say there were not times I was not clear headed but I was definitely a mess more than I wasn’t. I didn’t like that person. I am embarrassed when I look back at how I acted. I do not ever want to be that person again, she was not okay.

Since the last surgery in April, it took some time for me to be pain free.  And I was for about 3 months or so. Recently I’ve had pain again. Some of it’s been that buzzing pain I am all too familiar with. Some has been bad but nothing as bad as pre-surgery. Nothing that is sending me looking for relief. It’s tolerable.

When the pain first returned, I was upset. My mood went down, I was grouchy and angry and…a little sad too. I knew going in this was a possibility.  The surgeon told me, with as aggressive as my Crohns is, she wasn’t sure how long it would be before my small intestine was affected. Months to years.

I took a day or two and made a decision that I was not going down that dark path again. I was not getting depressed, not going to get drugged up. I am going to take this in stride and just face it. If this disease wants to try to knock me down again I say bring it. I feel like I am more mentally prepared. I don’t know what’s going to happen. Will this small flare lead to a big one and another surgery? I hope not but if it does, I will face it. I will not hide from it this time. I will not have a pity party.

A lot of what the surgeon told me last year is scary. If the disease starts acting up in my small intestine, that could lead to resections (removing small pieces of my small intestine) which, depending on size would be laparoscopic or another major surgery. The worry is, if it continues to happen, not having much small intestine left. You can live without a colon but you cannot live without a small intestine. Short gut syndrome (when you have very little intestine left and can not get nutrients from food anymore) sounds terrible and I hope I can go many years before that happens, IF it happens. In many cases with short gut, you are on permanent TPN. That was the IV nutrition I was on last year. No food, just IV. No thank you. I am hoping, and praying, that this little flare goes away on it’s own and I don’t need any further surgeries for now.

It is scary, this disease is scary and sometimes I do worry that it’s going to take me before I am ready to go. I want to see my kids do all the things I hope for them in life. I want to see them graduate high school, get married, have their own kids. I want to get old and grey and even more memory fogged, annoying my poor husband even more.

Mostly, I want to be happy. Sometimes, that is a struggle for me. My husband says I tend to be pessimistic, I call it realistic. Maybe it’s a little of both.

So, with this flare I’ve decided that I am just going to be happy. I am going to focus on all the good things in my life. Play with the kids more, enjoy the company of my friends and family and just try to not worry about the what if’s and the diagnosis so much.

I can’t control what happens but I can control how I react to it.

I may not always be able to do this, I may slip, I may struggle. I hope I do not slip back into that person I was last year. I hope that if I start to, the people in my life who love me will knock some sense into me. I am trying my best and hopefully a different attitude will help me get through whatever’s coming with a bit more grace that the last time J