Compartmentalizing

I am so terrified of all these emotions I feel inside but am keeping in a "box".  It is so scary for me physically.  I don't want to aggravate my lungs and the kind of release I feel coming will do that.  I don't know what to do.  I feel like this compartmentalizing is dangerous and it's starting to impact my mood.  Mike & the girls laugh a lot and I just can't join in....I feel indifferent to so much.  And I'm afraid......I miss my dad..hate doing all these things without him.....NEED him with me.  And he's not here.  Afraid these lungs are going to kill me too young...especially after yet another hospitalization.  Just afraid...

Gonna see pill doc today...see what she has to say...need therapy next week...

Well.....more than one more day I guess

So Dec 20th is just a bad day for me....got hospitalized same day last year and it sucks.  I was at least afraid/prepared this year but it does not make it any easier to be stuck in the hospital the week before Christmas AGAIN.  It's not right and it's not fair that I am hurting all those I love so very much.  My poor husband is so stressed.....my kids miss me and my mom and brother are so worried and we are all still trying to figure out how to make it through these holidays without my dad for the first time.  It SUCKS!!!  I want to scream, but that would probably only give make my lungs spasm so what good would that do???  I know this is life and I know I have to find a way to muddle through it and make it the best life I can but can I please get just a small break??? Please? 

I haven't allowed the "why me's" ever.....why not??  Our bodies get sick...they are supposed to but it shouldn't be this hard all the time.  I focus, I really do, on the good days/ moments I have to get me through these hellish ones but I'm tired....physically and emotionally from the struggle.  I want my family to have a healthy Michelle so I can be who and what I wanted my role to be...not this.  Not this tired body I still don't recognize every time I look in the mirror. 

Okay Santa....Please make 2012 a better year...please?  Lord...hear my prayer.

Nervous...hoping for one day

I am hoping these lungs are just down for the count for one day....please.  The party was wonderful and I truly did not overdue it but had a terrible overnight.  I woke up okay but tired so was resting.  Then I got a visit from the PCA of my friend who is a quadriplegic to bring me my Christmas present and she is a chain smoker and my lungs closed as soon as she entered my house and I haven't recovered since.  On O2 and doing more nebs and praying it is JUST ONE DAY......PLEASE...PLEASE.....PLEASE.....

Nights

I so hate my overnights......I use this ridiculous bipap mask w/ O2 and STILL need nebullizers.  Apparently, apnea is not related completely to asthma....lucky me.  And when I have a sinus infection like now, I wake up, vomit and THEN do the neb...it is so fun to vomit phlem while short of breath...tired of this. 

Had a wonderful time yesterday with family at our potluck dessert...there were some important family members missing (besides my dad) but it was still wonderful.  And hard b/c he was really missed.  We all put on brave faces though and made it through.  Joe is really struggling and I wish I could take some of his pain away.  When he gets this upset he often pulls away and I'm hoping he won't..I'm hoping we can pull each other through this week. 

My mom cries a lot but is handling things okay.  She has a new cat she has to train that is keeping her busy which helps.  He bites.  But is really fun and gives her someone at home to take care of which she needs.  Besides me and the girls. 

I'm not sure what next weekend is going to be like....rough I think but we'll make it through together.  I hope I can keep handling this sinus infection at home...doing okay so far but the weather is getting colder which keeps me inside blech!!!!

Christmas

Christmas is so rough this year but to see my brave face you wouldn't know it.  I've done all the decorating at my house and my mom's, made plans for a potluck dessert at my house, done all the shopping and wrapping, DVR'd movies for the kids and watched with them, and on and on and on....but I've done it all with a heavy heart.  I miss my dad.  I miss him so much.  Tonight having the carolers sing to us TWICE brought it all to a head for me....that and seeing the wreathes they put on the graves of the soldiers at my dad's cemetery.  Breathtakingly, heartbreakingly, beautiful.  Watching my mom cry for an hour here, silently, because it was a bad day and helpless to heal her pain.  Struggling watching my brother hate everything to do with this holiday and holiday season.  All the while fighting a sinus infection that has hit my lungs to stay out of the hospital but if I can't, making sure absolutely everything is done so my girls will have everything their hearts desire (well certainly not everything...no American Girl Dolls this year or cell phones, etc).  And trying but failing in not being a burden on my mom and Mike and friends b/c I can't do more than nap....it is so hard.  And I'm tired......

Roller coaster week

This has been such a physically and emotionally charged week for me so far.....I wonder how much of it is due to the full moon which always impacts me.  Sunday was especially hard.  The day started with me and my mom on the phone to Disney to plan a 3 night DVC members only cruise for Jan 2013.  I was so excited to get through right away and then get the trip booked.  Then I realized how much my dad would have loved it and really started to cry.  After pulling myself back together, I went to the CFD kid's Christmas party that Mike & I plan every year.  I used to be way more involved with the setup but due to my lungs, I can't do it anymore.  I just do some ordering of crafts & make sure he has everything he needs.  The party was wonderful and the kids had a blast which was the point and every year it grows a little bit bigger which is great, but my dad was Santa last year....missed him a lot.  Not the same without him.  That is what is toughest about these holidays.  He LOVED them and was so involved in everything we did.  Trying out the new normal is okay, but just not easy.  Then I get home and get online and find out that one of my friends from the SARP group died from asthma/copd complications.  This hit me HARD after the day I had had and hit WAY to close to home.  She was only 40.  Had had severe asthma much longer than I have but the reality that this illness kills us is scary.  I'm not ready to die!!!!  I will not before my time!!!  I will survive and be as strong as I can for my daughters, husband, mother, brother and friends.  I have a great doctor who is trying everything to keep me from getting any worse.  It's funny, b/c as sick as I am, that is possible.

I started yet another sinus infection yesterday or the day before, not sure, and at least I know what to expect...overnight nebs with vomiting phlem, more nebs through the day and less energy.  What makes me nervous is that I got sick this time last year as well and ended up in the hospital only getting discharged on Christmas Eve.  I don't want to go through that again.  I'm hoping that the BT procedures I put myself through this year will help me avoid any of that mess......I have to finish the wrapping b/c Mike has NO IDEA what I got for who...he never does....Christmas morning is as much of a surprise for him as it is the girls lol.....we used to go shopping together but I have learned that it is not fun to do so I avoid that now and do it on my own.  This year much of it was online but some was in the stores. 

I hope to make it through the holidays without hospitalization....please let that be possible for me...That's all I want for Christmas....honestly.

2 years

So Dec 9 2009 was the date this new journey and new life began.  I came down with H1N1 and my lungs never recovered.  Went on disability and have been home-bound and hospitalized since.  10 hospitalizations in the last year.  Took quite a toll on my body.  I am no longer the active mom/wife/daughter/friend I used to be....I know that at my basic level I am the same person, but having chronic illness and being dependent on steroids for two years does change you.  Not every change has been negative, when I change the lens I look through, I have been able to be home with my daughters instead of working which I love.  I have made several online friends who are more than friends..they are sisters and love me as much as I love them...this happened so quickly and is wonderful and they save me from myself.  I have learned how to be humble and accept help, not an easy task, especially for a type-A personality like me.  I have learned what an amazing community I live in. 

I grew incredibly close with my dad in the year and a half before he died this past July unexpectedly.  This was truly the ultimate gift.  He and I became friends as adults.  I was given a gift and a blessing, one I would not have had had I not been sick.

I have limitations that I do not enjoy living with.  I have pain.  I struggle to breathe daily.  I have Cushings disease and the side effects are hideous.  I don't always feel like myself.  It is not an easy life.  But it is the one I have and I will make the best of it.  I always do.  I have learned how much fight I have in me as I struggle to live the best life I can with these damaged lungs. 

2 years is a long time but this could be my life....or not.....

Vulnerability

I feel so incredibly physically vulnerable these days.  Dec 9th, 2 days from now is my 2 year anniversary of H1N1, steroids and disability and illness.  I am so much weaker and in rough shape compared to how I was.  I am never sure how much I can handle in one day.  I have decided to wake up every day and say "I'm sick" and do what I can....if it's sitting then so be it.  Try much harder to manage my spoons.  No plans for tomorrow so rest will be good.  I'm not as good at it as I would like to be.  I have so much I want to do.  I have so much support, especially from my spoonies, Kara & my mom but I worry that I rely on my mom too much. 

Also missing my Dad more and more as Christmas approaches.  One day at a time when it comes to that, right.....

I know I can struggle and accept this...it is just so difficult.  I really want to know if I'll ever get better or if I'll ever be able to stay off this couch for more than a couple hours.  Or if I can stop with so many meds that only kind of help. 

Want to vs. Have to

So everyone was so incredibly nice to me when I posted about New Normals and our fake tree this year on fb which was great.  My problem is that I HAD to get a fake tree, didn't WANT to get a fake tree b/c my lungs just couldn't handle the pine scent last year and we can't risk it anymore.  And the tree is beautiful but I know Mike is a little disappointed b/c we've always had real trees and always enjoyed shopping for them and picking them out and the wonderful smell in the house.  Just one more thing my illness has impacted.  The girls don't know any difference, especially Ellie, but I do.  It hurts just enough.  One more change this holiday season to deal with.  For me, it's not always the "big" stuff, it's the small stuff that gets me.

On the news the other day, they honored 14 paramedics/firefighters/police in Nashua for saving 2 people from cardiac arrest.  I got so mad b/c no one could save my dad.  I was crying and yelling at the television being totally selfish and asking why and Mike was there and he said at the same time as the ff on the news that only 5% of cardiac calls get resusitated.  Didn't make me feel any better that we didn't beat the odds.  Not fair.  I hate all these changes this year and am working on dealing with them one day at a time but it's so tough.

What would I do w/out my spoonies??

So I pushed it again...didn't listen to my body and pushed way to hard and my body fought back....you would think after 2 years of trying to manage spoons that I would get it but NO....too stubborn for my own good.  Tried to do too much attending Katie's show & busy day Friday as well.  Well, here I am on the couch paying for it w/ O2 & 4 hour nebs. 

Thank god for my spoonies and their ability to bring me back to the reality of my situation.  Having them "yell" w/ love at me is so different than when Mike or my mom or Joe does it.  They are my rocks and I would be completely lost w/out these women in my life.  Andy, Debby, Christie & Tami you are so good for me!!  I love you all! 

I'm hoping a couple good days rest will help...here's to hope :-).  

Busy day even though sob

So yesterday was a busy day even though I was sob and needed more nebs than usual.  I just wish I knew why.  Sometimes it's just a day I guess.  Still having the back pain I hate but meds do help some.  I did get great news that my pcp is staying at my practice so I do NOT have to train a new doc which is fantastic!!  I couldn't be happier about that. 

I took Katie to her dress rehearsal tonight for the Christmas show which marks the 2 year anniversary of my disability but it was okay b/c I got to spend time with some of the mom's and feel "normal".  That was really nice.  The show is this weekend and I'll go to both shows Saturday but skip Sunday.  This is one anniversary that I am trying to find "acceptance" for.  It's tough though.  This disability has brought me closer to some truly amazing people....my spoonie & asthma families online and my community here at home.  And I've been home with my kids instead of "having" to work.  Gonna try and avoid the "but" for this blog today. 

Starting to get colder out which means stuck more inside which I HATE but it is what it is....

"healthy" anniversary weekend

This weekend two years ago is when I contracted the H1N1 virus and my asthma became severe and I became disabled.  This one is hard b/c it involves Katie's annual Holiday Dance Show.  I love watching her onstage dancing and it makes her so happy...I am just so nervous and kind of angry that I can't enjoy it w/out that nagging "what am I gonna catch this year" feeling.....I'm gonna be masked up and gloved up and I'm no longer a room mom which I  also miss tremendously. 

The other issue that makes me so nervous is how much worse I am every year....If I compare last xmas to this xmas my health has taken a major decline.  It sucks.  My mother keeps telling me I make her nervous b/c I don't have a "positive" attitude and she's right but it's not Always negative, sometimes it's reality which I face much better than she does. She often lives on the River Denial in Egypt.  I have limits....much more than I had a year ago and certainly WAY  more than 2 years ago.  I do have hope that in 6 months I'll see some improvement from the thermoplasty I put myself through but it is only 75% effective and I knew that going in.  And I'm their most severe patient.  I'm also nervous about the pulmo rehab I'll be starting in January but hopeful at the same time that it will help me taper lower on the steroids if I can rebuild some of these muscles in my body and in my lung capacity.  Some of my severe asthmatic friends have been through it and it's helped some but not all and not completely..

So I sit here and hope and despair, depending on the time of day....losing my dad this year certainly hasn't helped either as I miss him every minute...

I can do it ha ha ha

You know it's interesting, b/c Katie has SPD and Anxiety Disorder and we have a mantra at our house....I CAN DO IT! when there is something very challenging for her but we need her to try.  My I CAN DO IT has turned into a sitting on my ass and letting other's do it.  Asking for help.  Feeling disabled.  Trying to spin that into I am good enough. 

A month without therapy has NOT been good for me.  Need to go.  Missing my dad....Mike doesn't get that part all that well which makes it hard.  He also has no poker face so when I ask him to do something he doesn't want to he does it but the "blech" is written all over his face. 

I don't want this BODY anymore!!!!  I want the old me back!!!!  Please please please!!!!  I know it's not gonna happen but Santa, THAT is what I want for Christmas....

Thanksgiving

Thanksgiving was tough but turned out to be a wonderful day spent with family.  The hardest part was leaving at the end.  We may not see these family members at Christmastime b/c of scheduling and my mom not hosting a big Christmas dinner this year so it was really tough.  I love them so much.

The worst part of the day was my husband's insensitive comment before we left....he asked if I had spoken to my brother and I hadn't yet.  Now I had had a good morning just being busy and puttering around the  house doing the cooking I needed to do and getting the girls ready, etc.  He slept b/c he had worked overnight the night before and was tired.. no biggie.   Before we left he told me that he had thought a lot about how I was feeling anxious about the holiday and that bothered him b/c my family holidays are the ones he looks forward to b/c his family is so nuts.  SORRY dude....My FATHER died and I can't help it if I miss him and hate it!!  I let it go but why can he NOT get it???  He really is an amazing man and I love him dearly and is usually sensitive but this time you missed the mark big time buddy!!!  UGH!

Prepping for tomorrow...not so Happy Thanksgiving

Even though I am watching two extra kids today for some amazing friends of mine, I am trying to regroup and prepare mentally for tomorrow's Thanksgiving.  It's gonna be so incredibly tough.  I miss my dad so much...there is a hole inside of me.  Seeing family will be wonderful but tough too and am afraid I will cry all day...I guess whatever will be will be....

I just am hoping I don't make it more difficult on my mom or brother or my daughters.  I'm trying to go in with no expectations....not easy. 

It's funny, this blog is starting out to be my whining board but it's what I need right now and I know that slowly it will change as I do.  I have hope still.  I have my dad's strength and love to guide me.

I can't take anymore

Seriously in the middle of a huge panic attack so gonna ground myself the only way I know how...blogging to keep myself in the present....get rid of the toxins.  After fighting with my brother today...huge pain in my lower back and diaphram, trying to decorate my moms for xmas, being so afraid of crying all day on thanksgiving missing my dad so much, what happens....the project I made my mom for her annalee dolls fell off the wall.  I just feel like I can't do anything right and me and my body are not good enough.  I HATE THIS I HATE THIS I HATE THIS!!!!  Please make it stop....I can't take one more thing!

Am I enough

This last recovery from the 3rd thermoplasty has been really much too slow for my liking....trying to taper, slowly is also taking it's toll.  And missing my dad while decorating his house and thinking about Thanksgiving has been really rough emotionally which I KNOW is impacting my ability to breathe. 

I just want it all to be enough the way it used to be.  I haven't been to therapy in a month b/c of my health and really need to go but have to wait another week.  I want to be enough.  I know in my head that everyone thinks I am, I just need to believe it myself too.

All the pain I've been in has made me have absolutely no patience with my girls who are not listening only b/c they are so excited about the holidays which is NORMAL but not fun at all.  I HATE yelling at them but it is starting to happen way too often b/c I have to tell them 4 times to do something simple like wash before dinner.. we wash before EVERY MEAL EVERY DAY!!  Not new.....yet I'm turning into someone I don't like b/c I yell. 

Okay...gonna end on a positive...I am enough...my girls will grow to understand it's okay to get mad...I do apologize for yelling.....I am worth it....I can do this...

New

Hi...so for my first posting I'll talk about how I overdid it yesterday and am still paying for it today......I so wish my body wouldn't be so weak and have such crappy lungs but what can you do.  It's been a tough week as we started decorating my mom's house for Christmas and we are all feeling more pain from the loss of my dad in July.  Am proud of the project I made for her Annalee dolls though.  Will post a pic when it's finished.  My back is killing me and I wish it wasn't b/c it makes me push my lungs harder when I try to do anything at all.  I did get a nap in which was nice considering I didn't yesterday and was ASLEEP at 730 but up from 130a-4a...

My blog title means a lot to me b/c I have spent the last two years trying to Just Breathe....one day at a time.  One breath at a time.  One precious moment at a time.