Monday, March 31, 2014

Is it spring now?

Well, April should be a good month - no more snow right? My reversal surgery is scheduled for the 21st. I am ready, nervous, but ready.

Friday I have to spend a good part of the day at Hopkins, getting a few tests to make sure I can even GET the surgery. I am being put out for at least one of them (but hopefully both because the other one sounds painful so, yeah, not looking forward to that) All I can do right now is hope and say a little prayer that the tests go well and I get the go ahead for surgery. 

Last time I had a procedure at Hopkins they tried 6 times to get an IV line in and I wound up with a PICC anyways ( I still have scars from all three of the PICC lines I was lucky enough to get since October). They even tried to get me to agree to a central line (no way) so I couldn't be so "difficult" when I had to get IV's. Hopefully it'll only be one stick this time but they tell me when I am nervous it's harder to get that line in and…. how is it easy to be not nervous? At least my husband will be there with me this time. I was alone last time, and scared, which made me probably even more nervous. He'll be with me for all of my Hopkins visits this time which is going to make everything so much better. My procedures on Friday, my pre op visit on the 16th and my surgery on the 21st. 

I still wish I knew how long I'll even be in the hospital. Apparently that's not information easily given since my recovery will depend on how easy the reversal is. If she can do everything from the existing stoma site, without additional cutting, I could probably be out within a day or so and my recovery will be what, 1-2 weeks? However, if my body decides to be difficult and she has to cut me open again… it'll be at least a week in and then another 4-6 week recovery which includes not being able to lift my kids again.

I am looking forward to being put back together. And while I hope it's the simple surgery… I'll take what I can get. This was not a surgery I wanted to begin with. I wanted to be put back together as soon as she removed that section of my colon - I never wanted this. And, to be honest, it weighs heavily on my mind the last thing the surgeon said at my last visit:

The surgery was very unconventional and… we'll see if it helped. Once your colon is back in working order, the same thing could very well happen again.

Which will mean I'll be back in the hospital. And I KNOW I should remain positive and have faith that this surgery will help me get through at least another 25 years of dealing with this disease. But… I saw her face when she talked to me about what will happen post surgery. The woman who works at HOPKINS, is one of the best in her field, I saw that she CLEARLY does not think this was the answer. Call me crazy but that's how she came across to me. The answer can not be, cut out my entire colon (which was presented as an option last time and I said no). It just can't because I don't feel like I have the strength or the energy to deal with that - it's too much and I've been through enough.

I didn't plan on this being a whiney blog about this but I guess I needed to get it off my chest. I know I am worrying about it all way too much. I just want the 21st to get here already so I can get it all over with and try to move on. I have overall been feeling better lately. I still have pain almost daily but it's not so bad I need to take anything stronger than a tylenol (most days anyway). I call that my functioning level of pain and that's just my normal so I can deal with that. At least I haven't needed the strong stuff daily in a long time now. I did hate how I felt being doped up all day long. Do you have any idea how hard it is to take care of two little ones when you can barely stay awake? I do feel lucky that when it was time to stop taking those pills, I just stopped. I was on dilaudid and various other narcotic pain meds from October through Febrary (and a little bit into March). I didn't get addicted which I think is pretty amazing considering how long I was on them on a daily basis.

Now I just need to work on my worrywart nature and we'll be good :)

Tuesday, March 25, 2014

A lot going on

I've got a lot on my plate right now and a lot that keeps me from sleeping. Some things I have talked very little about because I'd just as soon try to forget them and some things I've talked a lot about but are still on my mind.

Today was a bad day for me. I spent a good deal of it pissy and in a dark mood. I mean, I yelled at my daughter today who isn't even 2 yet. She wasn't doing anything bad… just whiney and slightly bratty… probably because she has teeth coming in. At one point, I snapped at her and she almost cried (sorta cried a little) then went and got her coat and asked for her Auntie. Yep… Mommy fail for the day for sure. I felt bad after and tried to not be so grouchy but damn, I woke up way way on the wrong side of the bed today.

A good part of my mind is on my health, new medications (are they working, not working… what?) and my surgery next month. I am BEYOND excited to get my reversal and also scared out of my ever lovin mind (aside from the fact that surgery and being put out is just scary). What if it doesn't work and all the problems I had starting back in October just come back? I can't take all the hospital stays and being drugged up 24/7 again, I just can't do it. While pain meds are terrific for getting you out of pain I really do hate how they make me feel - tired, groggy, in a haze - barely remembering the day or sleeping through most of it. I think from October to early February I slept more than I was conscious. That's not a life I want to be living again.

I am scared because I am having pain in my colon (and I REFUSE to take any more pain meds right now). This worries me and confuses me because I am not using it right now which means only one thing: the Crohns is still active there. What if I develop more fistulas and another abscess that just won't go away? I can't have another section cut out and another temporary ostomy bag. And I really don't think I can handle a permanent bag. This has been awful. I hate every second of it. The bag is seriously the most disgusting thing I have ever had to deal with and that says a lot seeing as I have two small children who have done a lot of gross things (including throwing up IN MY HAIR)

And then: what if the drugs don't work this time? I don't even want to think about that because… well, I just can't.

Everyone has good days and bad days and today was a bad one for me.

The good news is, tomorrow can only be better, right? Yeah I think so.

Monday, March 17, 2014


So a while back, when I wasn't feeling particularly well, my very close friend sent me a prayer she had said for me that day. I saved it (and another thing she said right after) to my computer. I read it on days I feel sick, sad, annoyed with life, whatever. It honestly makes me feel better. I read it when I think I am a burden to her or anyone else in my life, and it reminds me that I am not. That the people who truly love me and care about me don't want to see me sick or in pain and they really do want to help. It doesn't stop me from feeling the things I feel but reading it does help. It has helped me on days when I have been in a dark place and does help bring me out of a funk.

I've been thinking that this probably means something. I've been slowly becoming more curious about prayer, the bible, God…. all of it. Still not sure what's right for me or what I even really believe but… I am definitely more curious. If reading a prayer over and over helps me feel better then, what does that mean? Is it simply because someone I care a lot about wrote/said it for me or what? I'm really not sure. I have a lot of questions and am still a little wary of church but yeah… I'm curious a bit.

Being brought up Catholic and going to church every Sunday for years and years I feel like I should know more but I don't. I don't know if I ignored it, forgot it, blocked it out…. but I have a lot of questions. Hopefully I don't come across as stupid or ignorant when I ask any of the questions I have...

Tuesday, March 11, 2014

Things happen for a reason?

I think things happen for a reason. I am still trying to figure out if things just randomly happen for a reason or if there is some divine intervention taking place but whatever the reason, or cause, or whatever, I do really believe this. I think that every choice I have made in my life, good and bad, has made me the person I am today. I like to think that I am a good person. I care about others (sometimes too much even? I don't know), I try to put others first, treat people how I'd like to be treated. I don't lie, cheat, steal… but I really believe that even the bad things (and there has been some bad) have shaped me. I've learned from everything that's happened to me.

I am not perfect, no one is. I still learn from my choices, my decisions, my relationships… but I do think that everything happens for a reason. I think people come into our lives when we need them. Some stay, some don't, but I am not sure it's a coincidence that some people become parts of our lives. At least not every time. We've lived in our town now for almost two years. I've met many people in my two years here and some who I do think have come at a time when I've really needed them. There are people I've met that I was sure would be close friends (and now aren't really), some who I've met and never would have thought would be a close friend and now are very close to me. Each one of these people have brought something into my life that I've maybe needed.

In this town it seems I've made two very close friends, the type of friends you call family. One is gone from town for a while and I miss her terribly. What I find so interesting is since she left, another friendship has gotten closer. Coincidence? Probably not. I didn't seek out another friendship, it just kind of happened. I feel lucky to have these people in my life, as well as the other friends I have made here.

I don't make close friends easy. The kind of close friends you can tell anything to, at any time. The kind you hope would share things with you as easily as you do with them. While I am pretty much an open book about a lot of things, the hard stuff…. well, that's not easy to share. I can write it and post it… but that's totally different.

Well, I went way off track there. Anyways…. a times I miss my grandma. When she was alive we talked a lot. When I moved away I would call her at "tea time" and we would sip our tea and chat on the phone. It became a kind of ritual for us. For whatever reason, lately, I've been missing her a lot. I don't know if it's all the health issues or just wanting to talk to her but it's been hard. Today, Donovan (my 4 year old) came downstairs to tell me that "big Iris" told him to come down and tell me that she loves me. I have no idea if she really visits him (although I do like that thought) but he told me that at the exact right time today. Maybe he just hears me talk about her (although I don't often) or whatever but I believe there was a reason for that. I was missing her a lot right when he came down and told me what she said.

Sunday, March 9, 2014

Tests were done Friday

I had my tests done on Friday. Ultrasound of my ovary and my mammogram. The radiologist slipped and muttered something out loud "That's not a cyst, I don't know what that is" and then wouldn't tell me anything else. Thanks lady for giving me all weekend to think about this. Luckily I've had some good distractions this weekend including a fun game night. But, when I am alone with my thoughts I am wondering what the doctor is going to tell me when she calls tomorrow. IF she calls tomorrow. She better call tomorrow. Is it something? Nothing? I also wonder if I'll get a call back on my mammogram. Not sure why I even think I will. Hubs says I am being pessimistic - I am just a worrier, always have been.

Oh and Friday night I landed my damn butt back in the hospital. SO SICK of that place. I was having pain on my left side pretty bad. Any time I moved it was making me tear up. I was not going to say a word and just grin and bear it because I really didn't want to go back. But… my babysitter ratted me out (and I am not mad - grateful you care about me) to her mom (my friend) and she came over and took me in. Didn't really give me a choice about it either. Good friend that one - she's a keeper. :) But I am probably as sick of going to the hospital as she is of taking me there. Gotta stay away from that place!

The doctor couldn't find anything wrong and I have to tell you…. the look she gave me told me she now thinks I am a an addict looking for pain meds. I wasn't given anything for pain and sent home. The look said it all - since the blood work said I was fine then it was in my head. I'm not crazy… at least I don't think I am. It hurts a lot less now but I also spent all weekend not picking up the kids. I am starting to think I perhaps have some sort of hernia that I aggravated without knowing it. I am going to try my hardest not to pick the kids up - very hard when you're alone with them all day long.

Hoping tomorrow brings some good news so I can stop worrying that there may be something wrong with me. Well, something ELSE wrong with me. Spending the morning with my friend and then watching another friend's daughter after school (will take the kids to the park if it's nice out) which is good - I won't be sitting around waiting for the phone to ring.