Wisdom from my walk

Surgery was fine yesterday.  We have been without power since Sunday and are at a coffee shop getting online right now.   I am doing well post surgery but being w/out power is hard.  just wanted to update any one that could get online!!

Ike hit hard and several houses on our street have damage from fallen trees, but we were spared.    well off to figure out what’s next as far as food and ice…

I don’t know what I’d do if I didn’t have such an awesome hubby.  I took him to work this morning(Friday) and called him at 10ish and told him I needed to come home.   He did and almost always does.   We went to church so I could fulfill an obligation and chatted w/ my friend (who is also a pastor) and after many tears both there and at home I finally gave in to a nap and awoke feeling a lot better.  Now I’m feeling guilty for how I acted towards someone else and feeling guilty for not following through on a commitment I have this weekend.

The biggest issue I’ve had these last days is that I feel like once I told people about my health I was treated differently.  It’s not like it’s all of the sudden I’m not well, I just hid it well to a lot of people.   So it came as a surprise to many and I suppose what I mistook for not being wanted was them trying to be helpful, or so others told me today.   I have managed well lately considering, things got done and some days I even made it to curves.   I have really been enjoying my “job” at church and was excited about changes to our moms group.  now I feel like all of the sudden I’m out of the game.   I knew this next week I wouldnt be able to work.  I figured the following weeks and up until my hysterectomy I’d work and have the same routine as normal.   Now I’m not so sure.

My temper apparently got the best of me and I dont feel comfortable leaving my kids where I had been while I work.    Which sucks.  Like I said I loved working, I LOVE being able to be creative, productive and feel useful and best of all be appreciated!!   Not to mention it was a lot less physically demanding on me than spending those mornings w/ the kids, so they got to have fun and I did too.  it was a win win.  Now I feel like I’ve lost that chance.

I was told several times today that things will be fine once I’m feeling better in a few weeks.   Ha.  I so nicely told the one person I’ve been arguing w/ these last two days, that no I wont be better.  I havent been well for 10 years.  She didnt know this and how was she expected to when I never mentioned it.   Also, it appears I’ve made the mistake of not clarifying this surgery on Monday, I’m having it done because of my sleep apnea but it is no way a cure for it, in fact the ENT said so himself at my appointment.  it’s a last ditch effort to help me breath better overall in hopes of making my CPAP more useful to me which in turn may help me sleep better.   and in fact, I will probably have worse sleep over the next 4 weeks until I heal completely from it, which really is bad because my sleep already sucks.

When we moved here and I started meeting new folks I always wondered when it was “safe” to share w/ them about how my health has effected and most days does effect me.    At some point I decided I would only tell folks when it mattered, when it was necessary, or when I felt comfortable enough with them.

After we moved back to Baltimore and found a small group at Dean’s old church Caleb was just a few months old and I needed a laproscopy.   I also was going through post partum depression.   I shared these concerns and others we were having w/ our new small group.  we were told we were not welcome and that we were being too demanding and needy of our group.    I was afraid the same thing would happen here if I had to start out friendships by saying, hey guess what I really want to be friends but know I might need your help w/ my kids sometimes because I’m a loser mom who is unhealthy.  So I kept my mouth shut.

The more involved I got the more people I got to know and the safer I felt.   These last two weeks I only let people know I was having surgery because it affects my schedule which may in turn affect them.   I didnt expect anything from them.   but now I feel like things are different.  Like they expect less of me.  I’m still me, the same sick me I’ve been for years.   The same me they’ve seen get things done, be creative, take care of my kids and others, etc…..

but somehow it’s not the same and it never will be.  Now they all know I’m a loser who struggles w/ taking care of her kids because of her health.   I guess trying to hide the truth was easier but now I almost wish I hadn’t, but then again what would that have helped?

I always say when someone remarks on how I do it, those close to me who know the truth of how I really feel most days: why complain about it, it’s not going to help me feel better so why bother.   I get up, out of bed despite the horrid pain and fatigue I face every single morning.  I take care of my kids, my husband the house and as well as I can my obligations to church.

I never complained because it was pointless.   I’d still feel the same and I’d still be the same person.  I fight every day.   to get out of bed, to keep up w/ the kids, to get household chores done that are easy to others but exhaust me even further, and yes sometimes I force myself to go work out because I have to.    and some mornings, like this week I forced myself up and out of the house w/ the kids so I could serve others.   not because it’s expected of me, but because I believe God allows me the privilege of not having to work outside the home, so that I have more time for my kids and more time to focus on serving others.   I know I have more time than others who work and I want to be use this time to serve others and do God’s will for me and my family.

the next few weeks will be hard, no doubt.   I feel now though that they will be harder because I wont be able to do things I normally do.  There will be no forcing myself out of bed to rush off to do things for others because I’m not sure it’s going to work out anymore.  A few weeks after this surgery I’m due to get another, one that is drastically going to improve my quality of life, so we and the doctor hope, but one that temporarily, for 6-8 weeks will make me truly unable to care for my family or anyone else.

When we were in Baltimore and I got meningitis I had tons of friends and family to help out.   It was safe.   They knew everything, they expected nothing less or more from me because of my health, no matter how I was.

It’s hard enough explaining to a new doctor all of your health history, imagining trying to explain just the need to knows to people you want to be your friends.

I do try to be supermom.  I try to be a good friend.   I try to do it all.   the reality is I cant.  Dean knows and tells me all of the time I overdo it.  I used to be able to do it.   Not that long ago even.   It even seemed like lately things were going smoothly.    But the question is do I fool anyone, or just myself into believing that I can do it all???

For this I feel guilty.

I can usually tell when my crying at the drop of a hat is hormonal, i.e. pms.   I knew that was not what was going on yesterday.  After reading an email from someone I again burst into tears and knew something was awry.  I think I’m having a meltdown.  Knowing something was really off I ran to pick up Dean and met w/ my favorite pastor at church and still am weepy.   I dont know how to rid myself of this  tear invoking reaction I’m having, I have a feeling it will last a while, at least til some of the upcoming stress clears.   But praying I can get the boys to nap then nap myself.  Please God, I really need some sleep.  I really want my best friend Susan, but know that’s silly of me, I just want things to go back to normal, but I dont even know what normal is anymore, and why do I feel so entitled to be normal?

wohoo!  the day is almost over!

went to the gyn consult, he agrees that it will have to be an abdominal hysterectomy because of my history and is worried about bladder damage.   He said during the surgery they will look and see which ovary is worse, the right or left and try to take only one if possible and which one will depend on the damage if any to them.

He wasnt sure how long to have been this upcoming surgery and the hyst. but said a month should be fine.   He said to ask the anastheisiologist on Monday that they would be the best one to say, he said if it were just him he’d say he could do it the next day but that the anastheisiologist probably wouldnt like that, plus I should probably let my noise heal so I can breathe well and then have better chances of less complications during the hyst. due to the apnea.

I will wait for a call from his scheduler, and we’re aiming for November!   He did say he’d let me drive as soon as I was off pain pills which is good!   So I will probably just need help those first two weeks for sure but that I need to be careful lifting, and esp. w/ Zeke but he’s pretty self sufficient, maybe I can potty train him before then! 🙂

well Dean and Caleb are going to an audition for a play this evening.  I’ve had a killer migraine all day am looking forward to bedtime for the kids.   hoping it goes better tonight w/ all the boys!

3 days to surgery #1!!

2 months til surgery #2…

I’d write that I don’t think this day can get any worse but then again I do have an appointment about getting a hysterectomy this afternoon.    I so wish I could crawl into bed and never come out again.   The day didnt start well and hasnt had one good thing happen yet……in fact lots of little bad things that all keep making me cry and Bo says I should go to the doctor because maybe I have owies, as if prophetically, I have a killer migraine to top it all off.    I am praying bed time comes quickly and easily.

BTW – any ideas for how to get paint out of carpet?   darn kids….not kids paint either, like a gallon of paint, dark green…..on off white carpet.

It’s 9:05 a.m. and I’ve already been to the hospital, taken Dean to work, the grocery store and then the bank and am home already!   I am exhausted already too!   It’s a dreary day, the construction crew has been out since 7 working on the road repaving project in our neighborhood so the boys have been up earlier than normal too.  Hoping that means I can convince them both to nap before it’s time to get Caleb from school.  Until then….more laundry, getting dinner in the crockpot and chilling out because later this afternoon the boys have ENT appointments which should be loads of fun to do by myself.   Good times.

It rained most of the day Friday but it cleared up some in the evening.   Someone came to work w/ Dean on fixing his scooter and the kids played outside.   Zeke LOVED playing in the mud and puddles w/ his truck.  that child loves anything that makes him messy, so unlike Bo.

Saturday morning was lazy, at least for me! I stayed in bed as long as I could then we headed to Dean’s work picnic.  It was a beautiful day which included sack races, inflatable jumping things, great food, water balloon toss game, bingo(I even won a grocery store gift card!) , and eating competitions.  Dean was in the watermelon and the pie eating competition.   I was busy w/ bingo during the watermelon one but got to see the pie eating one.  I’m going to put the videos of it on flickr tomorrow.   We stayed at the picnic til it was over then went to straight to church for tech team.  Dean’s family showed up and helped with the kids since we had to serve.  After church we all went to dinner so when we finally went home it was late and we were exhausted!

We had to be at church early today again and then came home and took naps.  This evening my friend and her boys came over to share pizza before she spent some time working on a song for Caleb to use in an audition later this week for a show.  Dean is going to audition too.  If it wouldnt  be hard to find a sitter I’d try to do tech for it if they get in.

I took our two lil’ ones and her littlest for a walk to the park while her eldest and Dean played a card game and then we all enjoyed a snack and got the kids to bed.   it was a busy yet fun weekend.

I learned a new role on tech team that I really like.   I’ve been trained on a lot of the different roles and my favorite are switching and now powerpoint.    I told Dean I think the reason I was starting to have trouble w/ switching is because I had to be able to listen and comprehend fastly to do what was needed but w/ all the fibrofog and pain lately I just couldnt keep up.   I’m hoping after this surgery I can use the cpap machine and get to feeling a lot better.  I’m definitely not at the top of my game anymore.  I almost had to call Dean on our walk home from the park because I felt so bad, and that’s not normal for me.  I took a 3 hour nap today too, so I shouldnt have been so tired.

Tomorrow is my first pre-op appointment and I am not looking forward it.  It’s going to be a very busy week and I’m nervous and have so much to do this week, including finding volunteers for an event next Sunday night and I just dont know how to get them!

well off to bed for me, tomorrow’s a new day and praying I can sleep well tonight to be ready for it!