Daily Rants and Raves

Frustrated in Undiagnosed Land

 

1mb7xt

I had a good run.  From February to September has been the longest time I since I got sick that I have been relatively  flare free. A few small little flares , but otherwise, its been good.  The past month or so , I have noticed the flare getting worse.  It hasn’t subsided.

Arm pits sore, necklace of pain in full effect. Whole Body soreness.  I know I have said it before, I am so fucking over this.

I have an appointment with my Rhumy  coming up, I am not even sure what he can do at this point. But I am going to try and be positive.  I am hoping maybe something will explain why the sudden flare.

Its very hard to be positive. I am trying, I swear, its just so damn hard.  No one understands , because no one knows what the fuck this is.  Like, if you have a disease, chances are there are other  patients who you can relate to and who understand what you are going through.  With Meganitis, I ain’t got shit.

While I am thankful that this is not something that has killed me and I am thankful it is not worse than it is, it truly is awful.  I have resigned myself to the fact that this is something I will never be able to give a proper name and that I will have to deal with the rest of my life.  I just wish the treatment was working.

It’s a terrifying thought that I will potentially be in pain for the rest of my life.  On the Brightside, I guess I can say that I now have a high tolerance for pain.

I am sorry for throwing the pity party.  Some days this really just gets to me and the constant pain I have been in today is exhausting.

Thank you to all of you for coming on the swim with me.  The ups and downs , its nice to have some company on the ride.

thXW3ORQP0

img_1087

Things to Think About

Pieces of Her

Good night world and all who inhabit it,

I am gearing up for my weight loss surgery. It will be taking place mid June. Some of you may know that there is a process to this weight loss surgery, the process isn’t bad.  It is interesting .  I have done my first 2 nutrition appointments and met with the surgeon.  Next week I have , nutrition, psychiatrist and endoscopy.  Since I started , I have been trying to make changes so that once I have the surgery its not so bad adjusting.

First up -no bubbles.  Not supposed to have carbonated beverages so I cut out soda.  I was drinking sparkling water to get the bubbles thinking it would help me, but  I had to cut it.  I have been drinking my 64 oz of water each day .

Protein – I am going to start getting some protein shakes since day 2- day 9 after surgery will be all shakes.

Anyways, I have been trying to get moving more and this week I have been really thinking about my Mum. Probably the impending Mother’s Day holiday.

I was driving along this weekend and I started squeezing my butt to the beat .  I can hear my Mum now, her proudly proclaiming how she would do her butt squeezes to the beat of what ever song was on… Maybe if I keep it up, I will have ” Buns of Steel” lol.

I was cooking dinner the other night dancing around the kitchen, and all I could do was think of  Mum.  Dancing around to One Direction, no less.  Ridiculous I know, but have you listened to them? So damn catchy! Current obsession is ” Steal my Girl” and “Perfect” .  I ain’t too proud to admit I am a grown ass woman dancing around to a boy band that’s not NKOTB or Backstreet Boys. ( for the record, saw NKOTBSB in concert at Fenway Park – UNBELIEVABLE Show!)

Its these little things that I feel Mum shines through.    I know I am probably searching for signs and finding them in places, but its comforting to an extent, like there are pieces of her here with us .

Like tonight, I was taking a ride to go see her, her headstone is in.  I needed to see it in person. So I am driving along and ” Beast of Burden”  by the Rolling Stones comes on .   I don’t remember downloading it, could of been the hubs or maybe the kids, but in any case, there it was blaring out.  My mother and I had this running joke – I was forever singing ” I’ll never be your BIG SUBURBAN ….” instead of Beast of Burden.  So there I was crying my eyes out on the way to my mothers grave singing at the top of my lungs

” I’LL NEVER BE YOUR BIG SUBURBAN !!!”

the-rolling-stones-beast-of-burden-rolling-stones

I know she is always here with me, I just like when she reminds me in funny ways.

 

Back to my weight loss stuff – I am currently down 5 lbs! I am looking forward to the surgery . I know I have the best Guardian Angel on my side 🙂

 

Don’t Stop Believing !!!

img_1087-4

Things to Think About

I Feel Good Today !!!

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

images1[1]

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.

untitled

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.

img_1087-4

 

 

 

 

 

 

Things to Think About

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 .

thZH36VKCD

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.

img_1087-4

 

Things to Think About

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.

21728218_10159235921015705_3287678012992427147_n[2]

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.

img_1087-4

 

 

Daily Rants and Raves, Things to Think About

Trying Something Different

and-now-for-something-completely-different-1

 

Hello Big World! I know , I know, its been months.  It’s not  you, its me, lol.  So, if I’m being honest, I have been a lump.  I am dealing with chronic illness ( fibro and still undiagnosed “Meganitis ” )  and all the joys ( NOT ) that go along with it and basically just trying to stay afloat in this crazy world.  Long story short, I am in pain everyday.  And fatigued. Good Lord, the exhaustion !  I wish I could find a way to combat it.

So, I have been wallowing in this pit of dispair and honestly , its been 2 years I have been down , if we are counting .   I have let it hold me back and control me and I need to break free . I have read several times that exercising , while it will hurt, in the long run , I will feel better. I think I owe it to myself to explore these options.

Nothing in life would make me happier than returning to Coach Jane and Crossroads .  Unfortunately that is not in the cards right now, but I am not writing it off down the road a ways.  I need something I can do when I have energy, which means working out at home.  I need need something low impact while my body adjusts .

So, I have decided to try something new to see if it helps me. I could be completly wrong and this could blow up in my face, but I am going to give it a go. I am currently on Gabapentin for my issues and let me tell you , I thought I was nuts when I had gained 40 lbs, but it turns out , lots of folks gain weight with Gabapentin. I need a way to combat it, cause honestly , I am less sore when I take my meds and really don’t want to change that up right now.

I joined some Fibro support groups to see if I could relate to some folks and get just some general info.  Its a real great forum .  Here and there folks would post about if they were working out and the thing that came up more and more was Yoga and Piyo . Piyo is a Beachbody program.  After a lot of research and speaking to people, I decided to give Piyo and the Beachbody programs a try. I am a bit nervous since even when I was working out, yoga was not something I was into, but I kinda need this is going to be my wheelhouse for a while.

I plan on diving in tomorrow .  I gotta get a yoga mat.  I will check in and let you all know what I think .

Hopefully, I can find the balance and shake this funk.

Thanks for coming on the swim folks!

Blog Signature

 

 

 

Daily Rants and Raves

Happy New Year!

th-2

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?

996f63fc8641f76b9d64cf1ab5105542

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!

Blog Signature