I Feel Good Today !!!

Holy crap!!! It’s true – I FEEL GOOD!!!!

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I do not know what caused this change but man, is it great.  I am not sore .  I am not in pain.  My skin is not on fire.  My armpits do not hurt.

I don’t know why any of this has happened or how long it will last, but baby, I am rolling with it.

I have been really evaluating my life lately.

Things I know for sure:

  • I have to lose this weight – I talked to Coach Jane and next week I am starting back at the gym.  I have tried all sorts of ways to lose weight and honestly, the thing that worked for me the best was going to the gym and training with a coach.  And Coach Jane is incredible.  She pushes me and that is what I need.  I just gotta push through the pain . Now hopefully my workout clothes still fit.  I am really excited.  But I know that taking this step in the condition I am in is going to challenge me immensely. Hopefully this old broken body is ready for this ride.
  • I need to change my diet.  I have read that the best diet for reducing inflammation is the ” Mediterranean Diet” Basically heavy on the fish and omega 3 oils.  Yeah, I cannot eat fish. I can’t stand the smell of it, I think I have been scarred by too may co-workers microwaving fish …… UGHHHHHH.  But, I need to do something, I think I am going to give Gluten Free a try again , I am still on the fence, but I need to make a change.
  • I need to take care of me.  I need to listen to my body and not overdo it.
  • I am so blessed and lucky.  I have such a great family.  You should be jealous.  I am just so lucky.  I am lucky to have been raised by the most incredible creature to ever walk this earth.  I am lucky because I have a partner in life who has my back.  He is more than my rock. He is my strength.  I am lucky because I am a mother to 3 kids who continually amaze me.  I have good kids.  I am so proud.  I am lucky because I am the oldest of 3 girls and I have sisters that give me such strength when I am down . They have given my nephew and nieces, great men I consider brothers.  I have friends who are more than friends, they are family.  I have aunts and cousins who I actually talk to and see.  They are more than cousins, they are my big bros and big sis.  I am lucky because I have a good job.  I am thankful we have a roof over our head and food in our bellies.

 

Today was a good day . I am hopeful that it continues and I can become a human again.

Gotta see the light through the darkness.  I need to do that more often.  It’s the best way to honor my mom. She dealt with so much, I feel bad bitching about my issues , knowing how much she had to endure.  I miss her so much.  Grief is horrible.

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But ==== I am not going to wallow!!!! Mum would not want that.

Today was a good day and I am rolling ( or swimming ) with it.

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Don’t Hold Me Down

We all have insecurities. We all have doubts about our lives or ourselves at some point . And if you are gonna say you don’t , I am calling bull shit .

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I have to be real here , I’m sick . I have a disease according to my doctor we just don’t know which one . Is it deadly ? I doubt it , I think it would of gotten me by now . Is it common ? Yeah , gonna day nope on that . Do we know what it is ? Another Nope city .  I am very thankful that what I am dealing with isn’t as bad as it could be .  In the grand scheme of things , I am lucky . For the most part , I can still function . It varies from flare to flare , at the moment I can still do mostly everything.

Right now however , I’m in the middle of this big flare . The pain is excruciating.  I’m beyond exhausted . And my fingers hurt , really really bad . I need that to subside .  To say I am hot, is an understatement.  It feels like Hell itself is residing on my skin.  It has gotten as bad as randomly breaking out in sweats through out the days.  For example, its 60 degrees out and I am sitting with the Air conditioner on full blast.

What I am finding more and more as this progresses , is that I am having a more difficult time doing things.  Or things I normally look forward to, bring me severe anxiety.  Things require more planning and even with more planning, I still not be able to what I intend to.

I NEED TO FEEL BETTER!!!!

I keep telling myself I need to work through the pain I am in.  I am the one holding myself down, albeit unintentionally.  Which royally sucks.  Like, what do you do when you are literally causing yourself pain.  Its awful.

So, what do I do ? Here’s the plan:

My doctor is working on getting me approved for a different medication.  Hopefully this will be a key starting the car that is driving myself back to normalcy.

Its time for my appointment with the ENT to get a sleep study done.  Pretty sure I will be told I have sleep apnea, which losing weight ill help. But we will see what she says tomorrow.

I am doing my best to be positive like my mom.  Yesterday she was gone 2 months, it still seems like she just left us.  I still don’t know how to be.  When does it get better?  I know the answer, but I just wish that wasn’t it.

I am hopeful things will get better.

I can’t let me get…me.

Before I sign off, I just need to send my heartfelt love to the victims of all the recent tragedies that are befalling this world.   We witnessed the largest mass shooting in American history this week.  When will senseless violence end?

In the words of the great Bill S. Preston Esq. and Ted ” Theodore ” Logan :

BILL AND TED

I think if we all were more EXCELLENT to each other, we would find this world a much better place.

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Ice Cream Without Borders

I think Depeche Mode sang it best :

“People are people
So why should it be
You and I should get along so awfully

So we’re different colors
And we’re different creeds
And different people have different needs
It’s obvious you hate me
Though I’ve done nothing wrong
I’ve never even met you so what could I have done

I can’t understand
What makes a man
Hate another man
Help me understand”

Right now , in America, we are coming apart at the seams.  I don’t usually  get PC, but I just want to point this out – you , me, Bob down the street, the cashier at the store, every professional athlete, every politician, every man, woman , and child no matter what parts you were born with and choose to recognize –

UNDER OUR SKIN – WE ARE ALL EXACTLY THE SAME

Crazy = right? But seriously  think about it.  We all have organs, blood, veins, bones.  We are all the same, just wrapped in different packages.

If ice cream came in a box instead of a bowl or a cone- would you still eat it?

Damn right you would – who is gonna say no to ice cream? Its the same concept – same on the inside – different way of packaging it.  Ice Cream comes with nuts or without, chocolate or vanilla, sugar free or smooth and creamy. So many different varieties – it is awesome!!!  It is literally the beauty of ice cream.  What is your favorite flavor?  Mine is black raspberry or reverse chip ( chocolate ice cream with white chocolate chips, it is soo hard to find, if you do find it – do not deny yourself!!!)

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I think we should look at the world as our ice cream social .  All these different varieties .  And you know what ? If you don’t like one flavor, try a different one , change your add ins or your topping.  Throw some whip cream on that shit and hope for a big enough spoon.

If we as a people could stop being so focused on what we hate about everyone and start focusing on what we love about people , just imagine how great things could be for everyone.

So , instead of looking at each other how we usually do – lets start envisioning which flavor we are instead.  If anything – its gonna put a smile on your face!

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The Bittersweet Dance

I have been working on this one for over a week, forgive me for the past tenses.


 

 

After my mother passed away, my sisters and I decided to enroll all our girls in dance class.  The same dance studio that my mother went to , the same dance studio that we went to.  For years on Wednesday afternoons, we would make the half hour drive to Amesbury for our tap, ballet and jazz lessons. As I sat there waiting during my daughters class, so many memories flooded back. It didn’t  help that literally amongst the picture collages on the wall were some pictures of my mom.  Looking at her pictures, she was so full of life!  She was so happy. She loved dancing, she loved dancing school, she loved the family that owned the studio.  Its funny, so many people at her services commented on what a great dancer she was and how much she loved to dance, but honestly, I can’t remember when she was well enough in recent years to actually dance.  I bet it had been 10 years or more.

It was so bittersweet,  heartbreaking actually.

It seems like this week everything has been crappy.  I am still dealing with armpit issue.  They hurt so darn bad. Still.  I went to the doctors on Monday. More blood work.  If my levels were high, then Pet scan would be ordered.  My levels are elevated by not high enough I guess.  My doctor is also trying to get me on a different medication that may help me better.

In the meantime, I am still in pain and I am still sore.

I am struggling with my disease, that’s what the doctor is calling it.  Though the whole thing isn’t fully named, I am really having  a hard time.  I don’t know even how to explain it.  Just being is difficult.  It is hard getting out of bed, getting dressed, all my daily activities.  I have faith that I  will get an answer eventually  and that I will have a regimen that works for me. In the meantime though, Things suck.

I want to feel better, more than anything.  I am terrified that I am cursed with my moms poor health and that I am doomed to follow her path. And I know, I know, situations are entirely different , and yes, I am most likely being dramatic, but  I don’t want that. I don’t want to deal with this crap the rest of my life. I want to live the best life possible.  I just don’t know how to do this.

I am wrestling with my emotions and reality.  What am I supposed to be or do ?

I need to lose this weight. I need to be better and I need to move. But I can’t while I feel this awful on a regular basis . I need just need to have faith that answers and treatment plan will come soon .  Its hard .

My mother always saw the light through the dark.  The positive through the negative.  The love above loss.   I wish so much I could be like that , and I swear I am trying .  I just at a loss on how to execute it.

Hopefully one day I will rise above and be able to live this life the best way I can .

Until then, I will just keep swimming.

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Armpits and Magoo

The latest in a series of unfortunate events regarding Meganitis is an ongoing severe armpit pain.  Yes, I said it , armpit pain.  Truth be told my armpits always hurt. Weird, I know.  But its just another thing I have gotten used to in my daily life.  However , this week, the armpit pain has been freaking awful.  Throbbing pain in my armpits, yup, this is what my life has come to.

So, normally, I would call my Mom and she would say something to make me feel better regarding my armpit issue. Usually something wacky and insane to make me laugh whether or not she realized she was being wacky and insane.

Thanks to Facebook’s “on this day” feature , a wonderful memory came back.  Maybe some of you are familiar with the cinematic genius that is Mr. Magoo’s Christmas Carol.  This film was a staple in our house growing up and my mother, my sisters and I would happily sing along.  Honestly, we reference this movie all the time.  Countless hours of laughs through my lifetime thanks to his movie.

So today , when I was feeling particularly low and upset about my illness, this memory popped up on Facebook.

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Of course I burst into tears.  But this is just another way Mum was fucking amazing ,  I mean she was just nothing short of incredible.  And I am so thankful that this beautful creature is my mom.

I hope you all are lucky enough to have someone in your life like my mother.  Someone who found the laughs in everything, someone to be goofy with , someone to love you unconditionally no matter what bad decisions you make.

I don’t know when if ever my heart will heal.  I kinda think It won’t.

Going to keep moving on and keep swimming.

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You May Say I’m a dreamer

But I’m not the only one …. 

Momma was too . 


My mother was probably the biggest dreamer I know . Always having hope that her dreams would come true . I’d like to think that all her dreams came true , but I’m sure they didn’t . I mean if her dream was to be the bestest momma ever and the bestest nana ever and just the greatest human to ever live – then mission accomplished! 

Sunday we started the process of going through Mums things . Gut wrenching doesn’t even describe it . It was fucking awful . It would of been no matter if it was a month since she has been gone or 10 years . I hated it . 

As long as I can remember my mother was always dreaming of a better way , dreaming of her own business so she could contribute. She did the usual , you know the home party route , Princess House , Party Lites , she did Avon . In fact , it was when my mother was canvassing the neighborhood selling Avon that friendships were forged with our neighbors . Now , 34 years later , we are still friends . That’s magic . 

My mother had a cross stitch business for a large part of my life as her health would allow . She would sew these amazing samplers and then she would stain them to look antique. I would go with her to craft fairs . She was so talented , it blows my mind . She had done an after school program that I helped her with . She made cross stitch kits for these kids . They all loved it . Honestly I had forgotten about it until I was looking for a cross stitch kit for my daughter and I to do together . I , myself haven’t done it for probably 20-25 years, but I want to give it a whirl . And my daughter wants too a lot . So the search continues for a kit . 

Amongst my mothers things were a plethora of crafting items . From frames to jewelry making tools and beads to jewelry she wanted to sell , and as I think of it , it makes me so sad . She had all these ideas , probably thousands of ideas and she never really got to see them through .  

It just breaks my heart that her body would  not allow her to fulfill her dreams . I hope she didn’t look at it that way , but I can’t help but think of it like that . 

All of this has me really thinking about my dreams and what I want out of my life . What am I passionate about ? What do I want to do in my life ? I mean I got very lucky with 3 healthy kids , but what do I want ? For me ? To fulfill me ? I think as parents we get so caught up in our kids that we forget about ourselves and what made us who we are to begin with . 

So , for me , I want to get back into writing . I have story ideas that I need to bring to life.


I love writing . I always have and it’s something I have been going over and over . In another moment when Mum sent me a sign , I was watching the Simpson’s last night ( yes , I watch the Simpson’s , don’t be hatin’) and it was the episode where Moe becomes a writer and gets to go to Word Loaf . Check it out below : 

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I looked at it as it’s an episode about writing . And I have been searching to find myself and how I honor my mother . So , I took it as a sign . 

I think the way to honor her the best is to just be me and not stop dreaming . 

And now that I’ve got some star power up there , maybe some of these dreams will come true . 

Don’t stop dreaming 

Don’t stop Believing 

Don’t stop Swimming 

Signs on a Saturday

Hi everyone. How’s the weekend treating you ?  I had a very busy Saturday . Which I am already paying for . My body is screaming today . And I slept pretty darn awful . But let’s focus on the positives of yesterday . 

I made what is becoming my weekly pilgrimage to see Mum . This week my daughter picked out a red heart balloon that says ” I Love You” and we picked out a bouquet of various colored roses .  It’s hard for me to go to the cemetery. I guess it’s the part where I leave her there . All alone . I feel like putting in a couch there for us to go sit and talk to her , lol. I think though I want to get her some of those solar lights so it’s not so dark for her . 

I’m trying to deal with my mothers death in a healthy way , but really , how fucked up is that ? A healthy way ? What does that even mean ? How is any of this healthy or right ? Healthy should of been what she was . And right is definitely , what this is not . 

I also trying to get my emotions under control because the more upset I am, the more prone to flares I am.  I seem to be in a flare state since my mother died and I am in a lot of pain , physically and emotionally. I am hopeful my recent change in meds will help with this, but so far no . 

So ,back to my day . We go see Mum , then head for a quick visit with my dad . Then we head to get our hair done . My desperate need for cut and color and my daughters back to school cut . We get there early so we  walk around hunting Pokémon . Lots of walking around . We get our hair done , head to pick up my oldest from work and head home . The hubs and I went out for the night to celebrate our 18 year anniversary. 

We get home late and I am so exhausted. I’m trying to get to sleep when my daughter comes in upset about Nana. She is crying and inconsolable.  She’s clutching her bunny Pinky which her and Nana made together at Build a Bear . Seeing her like this just breaks me . I’m trying to comfort her and myself at the same time . So I tell her about the Signs . Signs that Nana will show her that she is there and with her . I tell her a story about how a cardinal came in the yard the other night while I was talking with my dad . How I know it was Nana . I tell her how even though she can’t hear her say “Hi Maddie , I am here ” she will let her know that she is there with her . I give her a blanket of my mothers for her to sleep with and I head to her room to tuck her in . When I get to her room she holds up 2 Beanie Babies . 

Wouldn’t you know ? ONE WAS A CARDINAL ! I burst into tears again . I told her that Nana was letting you know she was here already! I don’t know who it comforted more , me or her . 

Even in death, Mum is still looking out for us and giving us what we need . Absolutely incredible. 

One of my most favorite movies is The Crow. We even named our dog , Draven , when I was a teenager after the main character, Eric Draven. Mum loved that dog .  This is one of my favorite quotes from that film :

” If the people we love are stolen from us, the way to have them live on is to never stop loving them. Buildings burn, people die, but real love is forever.”


Real love . Real love extends beyond a significant other . Real love extends beyond our children , our parents . Real love is love we have for those in our life we would do anything for . Regardless of blood . 

Signs are real . Weather or not it originates in your head , if it comforts you , it’s real . For now it’s what I will believe in . 

Don’t Stop Believing 

My world was rocked to the core on August 2nd .  My sweet momma, who I know I have written about before, who has been struggling with illness for 30 years , passed away . She was only 61 and far too young to deal with all the shit she had to deal with .  My mum was my person .  She was always my cheerleader, always my support , always could make me laugh , to say she was incredible would be doing her a disservice.  My heart is in so much pain , I can’t even describe it.  We always knew we were on borrowed time with my mum.  I knew she would never live to be an old woman, but I just didn’t think it would be so soon, and it happened so quickly, I just wasn’t prepared.  But then again, is anyone ever prepared to let a loved one go?

Brigham’s on a Friday

It’s a dreary morning here in Boston . Not raining yet but it’s coming . I can feel the change in the pressure and my body is aching from it . The ride in from my home in the morning ( I always get 1st appt of the day ) is usually an hour or more when normally if it wasn’t Morning rush hour would be 20 – 30 mins . But today it was less than an hour . Strange . 

So , here I am at another appt with my rhumetologist . Here at Brigham and Women’s . The hospital that my mother frequented . The hospital that saved her life. Making her kidney transplants and various other surgeries . Helping with the internal bleeding she dealt with. Christ , they helped with everything.  

Maybe that’s the reason I am so comfortable here . In my quest for a cure for whatever the fuck I have , I have been to 9 doctors . My dr , Dr . Dellaripa, is just awesome . While we don’t have a complete answer , the partial answers I have gotten have all come from here. 

The ENT I saw here deduced that my enlarged lymph nodes were being caused by whatever is going on in my body , not an issue with the lymph nodes themselves . That was a huge breakthrough. 

So , here I sit . Patiently waiting , when from around the corner, I see this head peek out . It’s my doctor . He tells me it’s going to be a few more minutes . 

I should also mention that this is a new portion of the hospital and they give you LoJack when you sign in , ” so they can find you if you get lost ” Like  they literally say that to everyone . 

So there I am , LoJack equipped when the nurse calls my name for my vitals . We go into the room and it’s the usual small talk bullshit . Then blood pressure time . I need the big cuff . I have been doing this long enough that I don’t wait for the nurses and stuff to try it and fail , I tell them what works so life is easier on me and them . So I make sure she knows big cuff . The first time , yes I said first , the first time my blood pressure is high . I swear it said 149/93 but she said it was 140/93, then she did it again and it was 143/93. I never had high blood pressure until my Meganitis came on . It’s not at the point that we need to do anything just yet , but it’s just another thing . 

In steps in the doc , he says ” I haven’t heard from you , I always hear from you , I’m not sure if that’s a good thing or a bad thing .” And he’s right I usually have some sort of issue or crazy flare and I reach out . I explain it’s been basically the status quo. Then I explain about Mum. 

Based on the fact I was flaring before Mum passed and the fact that I have endured “an incredible amount of recent stress ” we changed my meds . Not sure if they are going to work out or not . But basically what I am dealing with, What he is treating me as is a rhumetoid variant . I have responding well to metheltrexate. But it’s all subject to change until I have a concrete answer to go with the Fibro . Wonder what the blood work holds in store . 

I’m a hard stick and I hate being some med students pin cushion . So I tell them where exactly they need to go . The thing that pisses me off is when they don’t listen . Today , it took her forever to find my vein and once she did , she went in side ways . Didn’t bother me at the time , but man is my arm sore tonight ! What the hell Bitch ! Ugh. 

I need to working out . I need to be better . I just need to feel better . I need to just be and just breathe . You know ? 

I need to keep swimming . I gotta find my way . 

Weekend Wrap Up

I had a pretty good weekend !  How about you ? 

I was up really early on Saturday , 4:30 am , had to be to work for 6 am .  Then it was a 10 hr day . Usually after working on Saturday  I need to take a nap . I was pretty exhausted when I got home but it was almost 5 so I just kinda relaxed . 

We had dinner then I decided I wanted to try and go for a walk . There is a rail trail about 10 mins from my house , so the hubs and I headed there .  

Lo and behold , I walked and survived. I survived all 2.4 miles !!! 

2.4 miles !!!!

I was dying at the end of the walk but I am so glad I did it . 

Then today , my daughter and I headed to my sisters house . First off was some Pokémon Go , my daughter and nephew had a blast . We walked around for a while, had some lunch , then headed back to the house for swimming . 

It was definitely not as warm as I would have liked but , I wanted to get some water aerobics (or my version of them ) in .


I was in the pool for about 45 minutes , running , walking , did high knees , jumping jacks and some actual swimming .  

Man , was I tired after that , honestly, still am .  But – again , I did it ! 

Not only did I get in exercise this weekend , I am down 8 lbs since I got back in the wagon ! 

Cheers to a great week everyone!