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!

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!

WEGO health Writing day #30- I slacked big time. A day late....

Yesterday's prompt--- Today, write a recap of your experience. What was your favorite prompt? Least favorite? What have you learned? Or describe your HAWMC experience in one word!

I tried. I really did. Between starting back to work, school homework, kids etc... I can't believe I managed to do 14 out of 30. I think that's a pretty good average.
Some days I knew what I wanted to write but didn't have the time, or the energy to get it done. Some days I just plain forgot I had it going on.
I like Day 7, 9 and 19.
Here are the links to them.....

http://gutsylisa.blogspot.com/2013/04/day-7-wego-writers-challenge.html?zx=aa8d516472424431

http://gutsylisa.blogspot.com/2013/04/wego-health-writers-challenge-day-9.html

http://gutsylisa.blogspot.com/2013/04/wego-day-19-vintage-lisa-throwback-pic.html

I've been really realizing the last few weeks how much impact my daily symptoms have on my life. I've been struggling with spasms STILL. The Flexeril and Valium barely keep them limited enough so I can function but I have had some days recently that a double dose didn't help. I went back to work and from day #1 my body is retaliating. Pain. Spasms. I can smile and fake it through most of my pain and discomfort now. I've had lots of practice.
Today I feel worn out. Just completely run down. It's a flashback feeling I don't like at all. I could just lay in bed all day. I'm working 5-10pm today so something has to give or it'll be a long rough night.
The frustration of feeling like I'm at the mercy of my stupid body that won't get it's act together is indescribable. I HATE it. The broken sleep is killing me. Being awake from 3-430 in the morning KILLS me. It's nightly. I'm tired(ha!) of it. My brain wants to wake up and go for a run. My body wants to stay in the fetal position in PJs all day long. I'm upset. I'm pissed. I'm annoyed. I'm fed up. I went for an MRI yesterday to see if there is anything the inconclusive $700 CT scan missed. For $700 it should have come to clean my bathrooms too. So now we wait. I should have results by tomorrow. I'm losing blood. Daily. It's not much but ANY puts me in panic mode. I definitely haven't hit anemic mode or anything because I know that feeling all too well. I can function like it ain't no thang at a 7 hemoglobin when normal is around 14. Sick girl. Ugh.
Also the self esteem is at an all time rock bottom low lately. I hate what I see. Oddly, my scars are the last thing I'm dissatisfied with!! it's everything else. I'm just weak. And look like shit. I'm tired. I'm out of shape. I feel like I've aged 10 years in the last 4. Chronic pain and illness will do that I suppose.
Anyway, enough of my sobbing.
Have a good day everyone. My semester is winding down. Having a mental battle about what to do about school. On the fence about continuing. I need a nap. Or a drink. Whatever.

Yesterday's prompt--- Today, write a recap of your experience. What was your favorite prompt? Least favorite? What have you learned? Or describe your HAWMC experience in one word!

I tried. I really did. Between starting back to work, school homework, kids etc... I can't believe I managed to do 14 out of 30. I think that's a pretty good average.
Some days I knew what I wanted to write but didn't have the time, or the energy to get it done. Some days I just plain forgot I had it going on.
I like Day 7, 9 and 19.
Here are the links to them.....

http://gutsylisa.blogspot.com/2013/04/day-7-wego-writers-challenge.html?zx=aa8d516472424431

http://gutsylisa.blogspot.com/2013/04/wego-health-writers-challenge-day-9.html

http://gutsylisa.blogspot.com/2013/04/wego-day-19-vintage-lisa-throwback-pic.html

I've been really realizing the last few weeks how much impact my daily symptoms have on my life. I've been struggling with spasms STILL. The Flexeril and Valium barely keep them limited enough so I can function but I have had some days recently that a double dose didn't help. I went back to work and from day #1 my body is retaliating. Pain. Spasms. I can smile and fake it through most of my pain and discomfort now. I've had lots of practice.
Today I feel worn out. Just completely run down. It's a flashback feeling I don't like at all. I could just lay in bed all day. I'm working 5-10pm today so something has to give or it'll be a long rough night.
The frustration of feeling like I'm at the mercy of my stupid body that won't get it's act together is indescribable. I HATE it. The broken sleep is killing me. Being awake from 3-430 in the morning KILLS me. It's nightly. I'm tired(ha!) of it. My brain wants to wake up and go for a run. My body wants to stay in the fetal position in PJs all day long. I'm upset. I'm pissed. I'm annoyed. I'm fed up. I went for an MRI yesterday to see if there is anything the inconclusive $700 CT scan missed. For $700 it should have come to clean my bathrooms too. So now we wait. I should have results by tomorrow. I'm losing blood. Daily. It's not much but ANY puts me in panic mode. I definitely haven't hit anemic mode or anything because I know that feeling all too well. I can function like it ain't no thang at a 7 hemoglobin when normal is around 14. Sick girl. Ugh.
Also the self esteem is at an all time rock bottom low lately. I hate what I see. Oddly, my scars are the last thing I'm dissatisfied with!! it's everything else. I'm just weak. And look like shit. I'm tired. I'm out of shape. I feel like I've aged 10 years in the last 4. Chronic pain and illness will do that I suppose.
Anyway, enough of my sobbing.
Have a good day everyone. My semester is winding down. Having a mental battle about what to do about school. On the fence about continuing. I need a nap. Or a drink. Whatever.

WEGO Day #19- Vintage Lisa throwback pic

Today’s Prompt:

• Post a vintage photo of yourself, with a caption about the photo and where you were in terms of your health condition.

The joy of finding a beautiful vintage item is the history behind it, imagining how it was used or worn and cherished by its previous owner. In many ways, vintage items have lived a whole other life before coming into yours. Take this concept and apply it to a vintage photo of yourself. What story does this photo tell about you and your condition? What was your life like when it was taken? How have things changed since then?

I am 'only' 35 so I don't know how vintage I can really be. Maybe to a 15 year old I am but when I think vintage I think the 1940s and 1950s. Pin-up girls and poodle skirts. Glam Hollywood. Red lips and peep toe shoes. 

Anyway, my last laptop crashed and I lost all my pictures because I was an idiot and never backed it up. BACK UP YOUR COMPUTERS EVERYONE! 

This means I lost everything from the second I went to digital. Daughter #1 as a little munchkin, her Kinder field trips, a lot of my illness documentation, pregnancy pics, nights out with friends, family, vacations, my wedding day to Hubs... I have to stop because thinking of it makes me sick to my stomach.

 So it was slim pickings, but here is vintage Lisa. 

It was the St. Patrick's Day parade day in Buffalo 2009. Insanity! We started off with brunch at 1030am at Cole's and literally wandered around bar to bar until we ended back at Cole's for an 11pm meal! I was with a group of people I love and have a blast with and miss so much now that I'm in Texas. I had a job I loved, awesome coworkers, the social life was kicking because I was going through a divorce and perpetually celebrating it. It was the Lisa D variety show!! I was working hard, playing hard and hadn't been diagnosed yet. I was a better mom now that I wasn't with my ex who was destroying my life. Symptoms were still mild where I wasn't worried and hadn't even seen a doctor yet. Life was good. I was starting over and I felt like ANYTHING was possible.  ---->

VERY shortly after this day my life would change, symptoms got worse and I officially became a 'sick' girl. 

Today’s Prompt:

• Post a vintage photo of yourself, with a caption about the photo and where you were in terms of your health condition.

The joy of finding a beautiful vintage item is the history behind it, imagining how it was used or worn and cherished by its previous owner. In many ways, vintage items have lived a whole other life before coming into yours. Take this concept and apply it to a vintage photo of yourself. What story does this photo tell about you and your condition? What was your life like when it was taken? How have things changed since then?

I am 'only' 35 so I don't know how vintage I can really be. Maybe to a 15 year old I am but when I think vintage I think the 1940s and 1950s. Pin-up girls and poodle skirts. Glam Hollywood. Red lips and peep toe shoes. 

Anyway, my last laptop crashed and I lost all my pictures because I was an idiot and never backed it up. BACK UP YOUR COMPUTERS EVERYONE! 

This means I lost everything from the second I went to digital. Daughter #1 as a little munchkin, her Kinder field trips, a lot of my illness documentation, pregnancy pics, nights out with friends, family, vacations, my wedding day to Hubs... I have to stop because thinking of it makes me sick to my stomach.

 So it was slim pickings, but here is vintage Lisa. 

It was the St. Patrick's Day parade day in Buffalo 2009. Insanity! We started off with brunch at 1030am at Cole's and literally wandered around bar to bar until we ended back at Cole's for an 11pm meal! I was with a group of people I love and have a blast with and miss so much now that I'm in Texas. I had a job I loved, awesome coworkers, the social life was kicking because I was going through a divorce and perpetually celebrating it. It was the Lisa D variety show!! I was working hard, playing hard and hadn't been diagnosed yet. I was a better mom now that I wasn't with my ex who was destroying my life. Symptoms were still mild where I wasn't worried and hadn't even seen a doctor yet. Life was good. I was starting over and I felt like ANYTHING was possible.  ---->

VERY shortly after this day my life would change, symptoms got worse and I officially became a 'sick' girl. 

WEGO Health writers challenge Day #9-- parenting while sick.

Here is today's prompt. I know, I'm totally late--->

HAWMC Day 9:

As a parent with health conditions or parent to a child(ren) with health conditions, what do you hope you’re doing right?

The hardest thing about being sick wasn't the pain. It wasn't losing a job I loved. It wasn't the meds that made me ugly and crazy. It wasn't the hospitalizations. It was how many times I had to tell my daughter, "No". Her PreK, Kinder and 1st grade was consumed with a mom who was always in bed, in pain, in the bathroom, half asleep, on pain meds, in the hospital, at the doctor.... the list goes on. I stopped making promises because I couldn't keep them. I knew if I said we would go to the park tomorrow, chances were that I would in no way be able to handle that. Seeing disappointment on her face so many times killed me. She hated when I was in the hospital. I don't know how much it freaked her out. I know she hated seeing all my IVs and the PICC line and she saw at least one blood transfusion. It was very, very difficult to explain. After my surgery she became more curious as I got better. She would ask to see my stoma. It didn't gross her out. She asked if she would have to get her large intestines taken out. Again, I didn't want to give a false promise so I just said that I hoped not. She told her teacher last year that her Mommy got her large intestines taken out. Her teacher didn't believe her. I'm not sure where she thought a 7 year old would come up with that on her own!! Things are better now. I felt guilty for not being fully present for so long. I felt guilty of the days I was missing. I hated UC for making me unable to be involved with my child. 

Family visits in the big H.

What I hope I did and continue to do right, is just be honest. I never lied about how I felt or what I was going through. She knew my pain. She knew my wounds. Saw my hair fall out. Saw me stapled shut. I always try to be as honest as it is appropriate for her age. I think it makes her understand and not be resentful. If I had hid it, she wouldn't have really 'gotten' it and then possibly would have just resented that I never wanted to play with her.
I hope anyway. I know having surgery gave me my life back. If I lay in bed now, it's a choice, not a necessity. Things have improved. My daughter hasn't forgotten. She's happy I'm better and can be more involved and I think I've disolved any leftover fears she might have had. I hope. 

Here is today's prompt. I know, I'm totally late--->

HAWMC Day 9:

As a parent with health conditions or parent to a child(ren) with health conditions, what do you hope you’re doing right?

The hardest thing about being sick wasn't the pain. It wasn't losing a job I loved. It wasn't the meds that made me ugly and crazy. It wasn't the hospitalizations. It was how many times I had to tell my daughter, "No". Her PreK, Kinder and 1st grade was consumed with a mom who was always in bed, in pain, in the bathroom, half asleep, on pain meds, in the hospital, at the doctor.... the list goes on. I stopped making promises because I couldn't keep them. I knew if I said we would go to the park tomorrow, chances were that I would in no way be able to handle that. Seeing disappointment on her face so many times killed me. She hated when I was in the hospital. I don't know how much it freaked her out. I know she hated seeing all my IVs and the PICC line and she saw at least one blood transfusion. It was very, very difficult to explain. After my surgery she became more curious as I got better. She would ask to see my stoma. It didn't gross her out. She asked if she would have to get her large intestines taken out. Again, I didn't want to give a false promise so I just said that I hoped not. She told her teacher last year that her Mommy got her large intestines taken out. Her teacher didn't believe her. I'm not sure where she thought a 7 year old would come up with that on her own!! Things are better now. I felt guilty for not being fully present for so long. I felt guilty of the days I was missing. I hated UC for making me unable to be involved with my child. 

Family visits in the big H.

What I hope I did and continue to do right, is just be honest. I never lied about how I felt or what I was going through. She knew my pain. She knew my wounds. Saw my hair fall out. Saw me stapled shut. I always try to be as honest as it is appropriate for her age. I think it makes her understand and not be resentful. If I had hid it, she wouldn't have really 'gotten' it and then possibly would have just resented that I never wanted to play with her.
I hope anyway. I know having surgery gave me my life back. If I lay in bed now, it's a choice, not a necessity. Things have improved. My daughter hasn't forgotten. She's happy I'm better and can be more involved and I think I've disolved any leftover fears she might have had. I hope.