Showing posts with label frustration. Show all posts
Showing posts with label frustration. Show all posts

Sunday, September 15, 2013

Long and winding road....

Hey there. It's been some time since I've written. To be honest I just didn't want to write the same old crap because nothing has been changing. Life is still going on while I am still in pain, on meds, struggling through my days and trying to participate in life when I generally want to stay in bed. I have felt numb the last few months. Fed up with my issues. Feeling inadequate and like a failure. Feeling depressed and like a burden to my family. My two year old knows to find me in bed a lot. She's already used to the reality of her sick mom.
 Aside from summer life ending(pretty uneventful), potty training with Daughter #2,  Daughter #1 starting swim and school again, it's just been the same bullshit with me. It's really brought out the NY bitch in me quite a bit. I'm definitely no southern belle.


 One big, outstanding thing is that I had my Social Security Disability hearing in August and I won! Yep. After being denied since 2010 and being told I'm not sick despite surgeries, daily meds that make me less than able to function and chronic issues, I finally got in front of a judge who very quickly put forth judgement in my favor. I cried. It was a big deal. I'll finally be able to get some income while I'm figuring out how to get myself back in working order. The added stress of not contributing to my household didn't help my already unstable self worth. I'm not built to be dependent financially on someone. I'm just not that girl. I like my money. I like financial confidence. So this will help.
I feel like the fight went on forever. Redundant paperwork and bureaucratic nonsense. So obnoxious.
I've been having horrible abdominal pain aside from my other issues with the cuffitis and pouchitis. I am going to see some specialist at Baylor in Dallas as the meds and steroids are not doing much. And I'm basically immune to antibiotics at this point. I couldn't begin to count how many rounds I've been on over the last 4 years. It's nuts. There has been talk of a temporary ileostomy again to let my pouch and cuffitis get a time out and heal. So that surgery is looming on the horizon.
I had a CT scan last month which showed a mass and according to my colorectal surgeon it is nothing gut related so referred me to my Gyno. I got an ultrasound with my Gyno and apparently my left fallopian tube is blown up like a sausage and needs to come out. Yippee-- more surgery! I know.. everyone is so surprised. I'm going to run out of organs. A fallopian tube is about the size around as a piece of uncooked spaghetti. Mine is blown up to almost 2cm. 3/4 of an inch. So since she was going in for one, she was just going to take both. Apparently there is a lot of info out now showing that ovarian cancer starts in the tubes anyway and since I've had a tubal there's no point finding out why this is happening so we are just eliminating the problem. We also discussed my autoimmune issues, my dysplasia history and the fact that many women with IBD also have related female issues as a result. If I end up having more GI surgery it will increase my chances of adhesions and could lead to more pelvic issues so in the end my Gyno and I decided to clean me out. Everything but the ovaries are going because I'm so pre menopausal and it would be silly to put me on Hormone Replacement while I'm dealing with all these other meds. So I'm getting opened up AGAIN. Is it weird it doesn't bother me? Doesn't even phase me in the slightest.
When my Gyno saw the ultrasound she just matter of fact said she had to go in and get the tube out. I shrugged and said, "I figured". That's how nonchalant surgery and hospitalization is now. It's not even rational but it's my life.
I've been saying for a while that I'm used to pain. Well, it's not that I'm used to it as it's just such a normal part of every single day. It's expected. I'm used to it's presence not the actual pain. That sucks no matter what.
Pain changes you. It really does break down your spirit. So much of being sick isn't in the physical as it's in the mental fight. The fight to maintain yourself despite hurting, giving up activities and just all in all having your life become almost unrecognizable. I am, at times, unrecognizable. My lack of energy and lack of involvement in things is not who I am. Well, not who I was. It's a struggle and a process to not let your head stay in the "old" you. It's a process to accept and adjust to who you have become. It's hard to come up with the right words to explain that but for a long time who I was in my head did not match what my body had become. I'm 35 years old and that depresses the shit out of me. I can't just take off running. Firstly, I have zero muscle strength from my daily fatigue and not using my body. I am chronically dehydrated from that whole no colon thing. Pushing myself through the pain is the easy part. You do what you have to but it's just different when your body CAN'T. I mentally prepare for the littlest things. Things most people take for granted. Getting in and out of the car hurts. My sleep sucks and I'm up for hours every night. Getting groceries will wipe me out until the next day. It's stupid. Just 100% stupid.
I have many days I just cry at the realization that life just carries on. It is not stopping until I am healthy again. I'll be 36 this week. I'm not kidding when I say I have lost the last few years of my life. Those years haven't been mine no matter how hard I battled to control it and live it. The last 4 years have belonged to my illness. Hey, I'm playing the hand I'm dealt because that's all I can do, but I don't have to like my shitty hand. I haven't lived. I've been going through the motions the best I can given the circumstances. It's very upsetting. What's more upsetting are the people who are healthy and go through life the same way. They have no limitations, nothing holding them back but themselves yet they are content to not fully embrace everything. I'd trade one day with them at this point because I'm just so fed up. I'm ready to become bionic and be done with it.
So that's my update from the last month and a half. Just more twists and turns and yet, it's all the same. I'm not sure how that can be but it is. I want more. I'm not satisfied with what's going on. I'm not satisfied with the turns my life has been taking. It is truly hard to fight for more, for extraordinary, when it takes everything you have to fight to be normal. To go to dinner, to do a load of laundry, to blow dry my damn hair. Touring Europe really isn't in the cards when a 45 minute car ride wipes me out.
As I'm getting older the famous "Bucket List" is getting longer but I'm feeling less confident any of it will happen. And not to be an asshole, but I deserve it. This shit has been long, and exhausting and excruciating and I deserve a fucking yacht vacation in Greece and unlimited wine in Italy. So help me.... my road keeps winding and if it's the last thing I do, I'm going to pave it EXACTLY where I WANT it to go.
Hope everyone is well. Thanks for reading.
Read, love, share.
XO

Wednesday, July 24, 2013

Can you be present with pain?

Hello hello internet world. I have not disappeared. I don't know what's been up with me the last few weeks. Just feeling uninspired about myself in general. Bummed out. Slightly depressed. It's frustrating. Trying to get my act together and fight through daily pain and still be PRESENT. It's tough. Pain makes me disengage. Check out. Or I get in a funk where I'm beating myself up mentally. Feeling bad about myself. I can be a hardcore Debbie Downer when I want to be. I'm going to be 36 in September. I am really down about the fact that I feel so unaccomplished the last few years. Where the hell did the time go? It goes in a flash, especially when you are chronically sick or in pain. You have nothing to show for it. It feels like I laid in bed,  or was in hospitals for the majority of the time and wasting a perfectly good life. This was not my plan. Planning is such a joke. This summer is half over already and I feel like it's disappeared. As I wrote about last post, I've been a big fail. I was starting to feel a little better but now it's just back to being crap.
I'm not working anymore. My surgeon kept extending my leave and I'll be having some other procedures soon that will require recovery and all that time just made me unreliable and a let down. It wasn't fair to my boss to just be in limbo about my status. She was so wonderful and understanding. I felt so disappointing. I still do. Many, many days I went into work in a lot of pain, struggling to get through a 5 hour shift. In the short time I worked there I went home early a couple times, and had to call in a couple. Very frustrating. Just another example of my body completely failing me. It is not something I can get used to. The thing is, it's not that I can't do something, it's the level of pain I fight while doing it, or the time to recover afterward. That's what knocks me out emotionally. It's just not fair.
My little girl turned 2 last week. She is a handful. Everyday I think I will get past this and to a better place before she gets to a point where she starts remembering. I'm tired of being lame mom. I never was. It's really hard to wrap my brain around it. Like I said- being more present. Fighting yourself to try to be that way. Many days I find distractions to waste time so I'm not focused on hurting or what I CAN'T do.
I was thinking the other day about things I used to do. I used to write. Poems, short stories... I wrote tons of them. I wonder why I stopped? That makes me a little sad. Somewhere along the line of having kids and getting sick I've lost all these little parts of me. Sometimes you don't notice until it's been years and you lost a bunch of them. I think reconnecting with 'me' would be a big help. I don't really go out of my way for time or activities for myself very often. Out with a friend occasionally. Out with Mat almost never unless we have random family in town to watch the kids. I stopped working out a million years ago because I was a sickly mess. Traveling on hold. I don't even really shop anymore! I know, right!! No shopping?? It's a crazy world, living like this. You feel great one day so you over do it and then pay for 3 days after. My semester starts soon and I just hope it won't be too much. I just want to finish and move on.... but then in the back of my head I think, "Well at this rate would I be able to work when I'm done?". Am I back in school for nothing because this shitty disease is going to sideline me forever? I would hope not, but imagine just not knowing? It sucks, big time. See- Debbie Downer. Piss, piss, pisser. I used to LOVE life. I was all in. Where did it stop? I hate that. I don't like myself much right now.
On a positive front, I don't have dysplasia. The wonderful pathologist made a typo. Yeah. Jackass. A TYPO. Thanks for that two weeks of stress, biatch. It was awesome.
Ok.. now that I've bummed everyone out big time and ruined your night, I will end. Sorry I was not entertaining and was so crappy. I'm just so blah about myself. I need something to shift and soon. As always, thanks for reading. I promise- more smiles next time!

Saturday, June 8, 2013

I'm in pain & uncomfortable & bitchy & I'm not sorry.

Hey there--- It's been a bit. I didn't mean to go this long but life has a way of making me feel like I got blasted with a Louisville slugger and then I'm down for the count. That was way too many sports references in one sentence!
So I've been working part time and for the most part it's kicking my ass. I am just so thoroughly exhausted I can barely function on my days off. I feel so guilty because I just want to sit down and not get up. It takes everything in me to get ready... When I work I don't eat much that day so I've lost some weight that I can't afford to lose. So work days I eat maybe one time. I don't drink enough on those days either so I know it's contributing to my dehydration, sluggishness and lightheadedness. It's just not a good combination. It amazes me what that 20-25 hours is doing to me. Not to mention the days I am in so much pain while I'm working. There are nights I don't think I'll make it. Or I need to take care of something while it feels like a hot poker is searing through my insides with my spasms. It's beyond frustrating. Some days I just want to give up and stay in bed because I think, that may be overdoing it at the moment. I don't know. I'm in a horrible catch 22.
Being in chronic pain takes so much out of me. I'm wiped out over the littlest thing. And it's hard to explain it, or make people understand without just sounding like a big lazy wuss. I was supposed to see my surgeon this week  but they rescheduled me once and then I had to reschedule it due to some personal commitments. So still doing the same meds. The antispasmotic drug puts me in a coma so I guess it works???? I don't know because I'm in a coma. So that's out for daytime. 5mg of Flexeril doesn't do much and if I up it to 10mg I'll be stoned out of my mind. Same with the Valium. So not sure what to do next. Some days I can't even think about dealing with this forever. I hate thinking that way because I keep telling myself, "Well, you aren't bleeding to death anymore", but that doesn't take the current pain away. And my canker sores are back. I have 5. That used to be my warning signs for a flare. When I get them now I freak internally. So it's Stress? IBD? I don't know but they Hurt! I don't consider myself to NOT have an IBD anymore although technically my UC was gone when my colon hit the biohazard bin. I still feel as though I am an IBD patient. I always will be. The actual diseased part of my body is gone, but the aftershock of that surgery continues to affect my daily life. I don't know what to do anymore. I don't know how to deal with it some days. I am just so worn out. I had two late nights at work and on my day off today have no energy to enjoy it. What kind of shit is that??? Complete shit, that's what. I don't enjoy cooking anymore because I feel like anything I eat will kill me later, and the effort it takes is more than the energy I have. I am mentally exhausted from the stress my physical limitations cause me. Every night when I go to bed I dread the morning because it comes too soon. My sleep is broken nightly. On the odd night I sleep through the night, it's a drug induced sleep and I still feel like shit the following day.
 I know... I bitch and moan and complain...blah blah. I'm running on empty. Faking being okay takes a lot of work and today I don't feel like pretending. I want to be a crabby bitch who is in pain and discomfort CONSTANTLY and I don't want to apologize for it. I'm sorry that this is inconvenient for some but- oh well. Too bad, so sad.  I won the big IBD lottery which has been a big ole F you for me, so anyone else's inconvenience is the least of my problems. Ugh-- I HATE being this person. Today isn't an anomaly. I just took my mask off. Figuratively and literally. I'm not even putting makeup on today.  Today I want to be a miserable, chronically sick asshole and not be apologetic for it. And that's all I've got. Sorry this was a pisser. Tomorrow may bring me something to feel happier about. Enjoy your health. Don't take it for granted. Take advantage of just being able to do whatever you want. Don't put that run off until tomorrow. Or the day trip or the hike..... One day you may not be able to accomplish it because of something you have no control over and you will wonder why you put it off. Thanks for reading. Enjoy your weekend, everyone. XO