Milestones

Finally , an answer!!!!

That is right folks – I have an official diagnosis!!! No more Meganitis, I have been diagnosed with Stills Disease.  Now, all of you are probably saying to yourself, what the heck is Stills disease?

“Adult Still’s disease is a rare type of arthritis that features a sore throat, a salmon-colored rash and a high fever that spikes once or twice a day. Joint pain tends to develop a few weeks after these initial signs and symptoms”

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This is a disease that is ruled in once everything else is ruled out.  I am also happy to report the Humira that I have been been on for a little over  a month is working wonders! It has been such a long road, but it looks like I am finally in a place with a treatment plan.

I was so excited, I had to go tell my mother.  Yes, I drove from Boston to her grave to tell her.  I mean, I know she knew already , I feel her around me all the time, but I had to go tell her myself.  It was my routine , go to Boston , then leave , call my momma.  Tell her  the good, the bad, the frustrating,the infuriating, just the way I was feeling and what the next step was or what the plan was.  It is hard to leave these appointments now and need to call her and know that she will never be on the other end again.

In fact, it blows. Hard.

The reason I chose Brigham and Womens Hospital for my care is because of my mother. For 30 years my mothers surergies, transplants , ( yes transplants, plural) and several of her doctors were all at Brighams.  I was very familair with the hospital due to all the visits over the years, and the fact that it is a world renound hospital didn’t hurt either.  It was something I trusted due to the fact that my mother was so sick for so long and I feel , besides her larger than life spirit, that this hospital had a part in that .

When I moved a coupl of years ago, we are only about 20 minutes from the hospital, barring traffic. I would go see her during her various stays at the luxurious ” Brigham suites ” as we would call it.  It sucked that she was in the hospital butit was closer to me than her home was so, I took it.

Now that I am starting to feel better and have an answer, I owe it to her to Be Better.  I need to get back into my routine, which seems like I am forever saying . But I really need to.  Need to get some consistncy. I am also anxiously awaitng my sleep study results.

So, onwards and upwards.

I am getting in a much better frame of mind.  Trying to figure out who I am , what I want in my life, who I want to be – for me and for my family.  I want to actually achieve some goals in the next year.

Gotta just keep swimming and don’t stop believing

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Things to Think About

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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Things to Think About

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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Things to Think About

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 

Things to Think About

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 . 

Things to Think About

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! 

Daily Rants and Raves

Happy New Year!

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Happy New Year Everyone!

I’ll admit, I have been quite miserable the last few months.  Throwing a personal pity party for myself.  I’m sore, I’m cranky, my appetite is horrendous, medication makes me sick….I have been just ugh.

Welp, I am really going to try and change this around.

I need to honestly, or at least dedicate myself to dealing with this chronic pain better.

For those keeping track, we are on 2 years of my body telling me something is wrong and no doctors being able to figure it out.

Current symptoms include: all over body soreness, painful arm pits ( yes arm pits) , side pain ,chest pain,  my  ” necklace of pain” ( my throat and collar bone area ) , crazy night sweats, fire skin and crazy appetite.

First off, gotta get my meds under control . The metheltrexate i am on is really helping my knees and the arthritis that developed in them , however the medication makes me soooooo nauseous every day ! like every day! i wake up and just want to barf, but i never do, its awful. I just sit and wait for it to pass.  Then there is the Prednisone…. ugh, why do they make it so it helps you feel better but you become a ravenous pig?

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Anyone else have that issue with metheltrexate?  Or Prednisone?

So, my doctors solution to that was changing it to an injectable one, however since i have no “official ” diagnosis and Meganitis is not a recognized disease anywhere, my insurance rejected it.

Ugh. So i was going back and forth with my doctor in messages and getting no where, so I have an appt this Weds. Hopefully I can get on the right path here.

I also am DYING to work out. To say my weight has increased would be a complete understatement, I don’t even recognize myself. I was going to get back at the gym, but then I needed another PET scan and my doctor told me to hold off starting back up .

But, now I NEED to do something. So , I am hoping I can get the ok to start back up , even if its small, and hoping he can do something to offset the appetite.

I never realized just how many people out there are dealing with chronic pain, be it from fibromyalgia, RA or any type of Arthritis , MS, cancers, its really nuts how many people are in the world suffering right now. It’s incredible .

We all find our way to get through the day.  One thing that I have found to help with my daily routine is Plexus. It has been beyond incredible.

They only have a small amount of products, but they have been awesome.  The Plexus Slim, The Ease , The Nerve ,  they are all so helpful to me daily. My pain has yet to be eliminated but, it definitely takes the edge off.

Honestly, I catch a lot of shit from people for promoting Plexus, but if they had any idea how much it has truly truly helped me, they would understand. Thats why I share it all the time, if there is someone out there like me ( based on my research there are thousands) that could benefit from these products, as a human , It is my job to share it.

 

Since I am hoping to be able to start doing some sort of exercise again, looking for feedback from the folks out there suffering from chronic pain. What do you do ? Or do you find that it is too difficult to do anything ? There has got to  be something I can do .

Here’s to making 2017 a great year!

Blessings and love to you all!

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