Faking It on a Wednesday

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I feel like Kurt is a good way to express myself. I am a huge Nirvana fan .

I feel like every day I am faking it.

Faking that I feel good.

Faking that I can handle this.

Faking that I am not brokenhearted.

I am trying to suck it up and deal with my daily pains.  I have moments where all i want to do is go to bed. I have moments where I feel fine. I have moments where I want to remove my legs and hang them on the wall. There is nothing I can do. Changing meds hasn’t helped . There is no cure for the fibro and if it is RA ( or a variant of it ) , there is no cure for that either.  Its just one of those things that people deal with I guess.

To be in pain on the outside hurts and sometimes it feels better. But to be hurting on the inside is a whole other ball game. I would take 1000 times the pain on the outside to alleviate this pain in my heart.

I have hurt before, for years I have been in a depression I guess in the clinical sense of the word. I Could not see the light. I feel like the light right now is hiding behind the shadows.  I know this is not how my mother would want me to feel .  I know she would say something crazy or something comforting or both. She had that way about her.

The reality is I miss my mother something fierce.  I miss hearing her voice , I miss her hugs, I miss just knowing she is here.  My mom was my person. My person I call when I am happy, when I am sad, when I have good news, when I have bad news , Mum was my person who could talk me off the ledge and make me feel better.

So, each year for the past 4-5 years I have been taking my son to the comicon in Rhode Island. Today they announced that Cary Elwes would be attending.  My most favorite movie of all time is The Princess Bride.  So, of course, who do I call to fangirl too?  I can hear her going ” oh how cool is that ?!” Not that my dad didn’t have pretty much the same reaction, but its not the same.

I am trying to figure out my way in this world and how to best honor my mother. I’m at a loss.

I need to get myself together, and get back on track. Just trying to figure myself out.

Gotta keep swimming

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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 .