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 !!!

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Long Days and Long Thoughts

Oh hello there world, I know its been a bit since my last post.  Honestly, I have thoughts and ideas every day that I want to share, but I don’t have the easiest time getting them out of my head.

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Here is my latest health update , for those keeping score, we are at a total of 10 doctors and yet I still do not have an actual diagnosis.  However, the current medication I am on, the Actemra injections 1x a week , seem to be actually working (knock on wood).  The Saxenda injections on the other hand, not working. All It seems to be doing is giving me bruises.  My left knee is still giving me problems, it sucks.  I have been waiting so long to feel good and its like , hang on a sec, we can’t possibly allow you to FULLY feel good. Ugh. Double ugh with cheese.  Mayor of Ugh City.

On a positive note, next Wednesday I start my journey with weight loss surgery.  To be honest, I feel like this is a last resort, but I also feel like a complete and utter failure.  I failed myself with bad decisions and bad choices. The sad part is, I really just realized this.  I wasted years of my life and I just hope its not too late to get my life back.  Then again, its been so long, I don’t even know what that would mean. I don’t even know what this life I long for is.

How terrible is that? Spending years wanting something and never making it materialize.  Story of my life.  When you break it down , I just want to be happy.  I have spent my entire life in search of happiness.  Pure happiness.  They did not call me Morbid Megan when I was a teenager for nothing .  Now I am Morbidly Obese Megan.

I want to be happy and content. Instead I am restless and depressed.  In the past three years, My life has become my illness.  Some days are not so bad, and some days are unbearable, and most days, I just deal with the pain.  Stairs though – motherfucking stairs are the devil.  My knee and stairs do not mix, never mind the fact that I am a Fatty McButterpants.

I hate the way I am . I hate the fact that my twisted sense of self brought me to this.  I hate the fact that my body is failing me and it needs help, medically and mentally.

Now I know my mother had so much more shit to deal with  and I cannot even come close to the turmoil that she had to endure on a daily basis, but I do know that I need to do everything in my power to be as healthy as I can so that I will be here past 61years old.   I truly do not know how she did it, but I am so grateful she did what she could to be with us as long as she was.

My story is far from over.  I need to live my best life possible ,  I say ” Just Keep Swimming ” to you all, but I am barely staying afloat myself.

Since my mothers passing, I have been searching for a way to honor her.  I have a clearer mindset as of late and I think Mum would just want me to keep being me, despite the obstacles and shit that gets tossed my way on the daily.

My mother took on every day with joy in her heart.  She faced every shot of medical bullshit dealt to her and made joke about it.  She found joy everywhere.

That’s what I need to do and Christ, it is harder than it seems.

I make jokes about my weight as a coping mechanism, but Mum, she made jokes about her situation for us I think more than her self.  And it helped, a lot.  She kept believing for us.  I used to think it was for her own sake, and maybe at the end it was, but it was a completely selfless act to help us cope I think.  From her “luxurious suite “at the Brigham and Womens hospital, to her crazy impressions, or just the excitement over a ham sandwich made by my dad instead of hospital food, she found the light through the dark.

That is my  mission. Find the light and be happy.  Doesn’t seem so hard, but will probably be the fight of my life.

Don’t stop believing and Just Keep Swimming Everyone!

I would love to read how you find the good within the bad and the light through the darkness, please share with us!

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Conumdrum

co*num*druma confusing and difficult problem or question

 

Its no secret that I need to lose weight.  Now more than ever.

I am like the Stay Fucking Puft Marshmallow Man.

stay puft

( Actual Likeness)

I am the first to admit, I am by no means a healthy eater and it has been quite some time since I was able to do a proper workout.  I would love nothing more than to get into the gym and lift heavy shit.  I am so hopeful that this new medicine will allow me to resume my life.

Have you ever felt trapped?  Try being trapped in a body you don’t recognize.  I feel like the real me is buried underneath these layers of blubber and she is drowning. Suffocating. She is disentergrating.  It’s like I am stuck in here and my skin is going to burst.

Here is my issue – and by no means am I making excuses or blaming someone else for my situation…. The fact of the matter is very simple.

Up to the past week, I hurt.  My whole body was sore.  It is very difficult to do anything when you are in pain.  So maybe it is an excuse, but it is the reason I have not worked out or done anything remotely resembling exercise.  I don’t eat good either, can’t blame that on anyone either.  Current status is wicked sore left knee. Fuckin arthritis. UGHHH

I have allowed my disease to rule my life.  I am not proud of it, this is a badge I do not want.  But sadly , this has become my reality.  And not for nothing I do not even have a name for this disease.  I have a faceless demon ripping my life from me and I can’t even blame anything for it.  Its frustrating as hell.

  • Whole body pain
  • Fire skin
  • Exhaustion

These are for the most part,  daily occurances.  While I have had some relief from the pain depending on the different medication I have been on , it always comes back.

Tonight I will do my  6th Actemra injection.  All in all, so far, the whole body pain has subsided and  the fire skin has too.  My knees are killing me, but I am pretty sure that is more due to my ridiculous weight gain.

So here I am , wanting to work out, wanting to be a better version of me and here I sit, broken. That is my conumdrum.

When I went to the Sleep Disorder doc, she recommended that I check out the Center for weight Management at the hospital.  I said yes, figured I would get some tips and tricks and maybe, just maybe , be able to jump start my weight loss.

I am stuck in a vicious circle.

Need to lose weight —> In pain and hurts to move so I can’t exercise  —> depressed about it all —> Eat more and move less due to the pain and depression —->  Miserable all the time —> always exhausted —> New medicine ( yay!) —> soreness subsides EVERYWHERE EXCEPT MY KNEE! —-> Finally feeling better —> can’t do shit cause my knee makes it hard to move— Back where I started —> Need to lose weight

So at the appointment I get weighed in of course.  And the number is the highest it has ever been, like disgustingly high.  Didn’t help that I had to do it twice cause the nurse asked me to get on the scale then walked away, like I needed to see those big red numbers twice.  Ugh.

Then as I sit reeling from the metaphorical weight of my physical weight, the nurse lightly says ” I’ll take of 3 pounds for shoes and clothes”.

BIG SHIT,what difference does 3 pounds make?! Is that supposed to comfort me?

Doc comes in and I go over my history while she takes notes and reads my file.  When your doctor says ” oh boy ” multiple times….. kinda sucks.  So she non chalauntly says I am definitely a candidate for surgery, particularly the sleeve version.  Because of my ” complex medical history” and my ,current medications, she did not feel that putting me on the common weight loss pill would be good for me and would cause issues.  She prescribed a hormone shot that I will do every day that should help with cravings.  Of course I need to wait for the insurance to approve it, so , not sure how that will work just yet.

So , here I wait.  I was told the surgical team will call me to start the process and make sure I qualify.  And all my doctors need to approve as well.  1st step is an informational meeting that I need to attend.

I have to be honest, I never imagined that I would be someone considering weight loss surgery.  And I know that my current state is of my own doing , and if I do the surgery , to be successful I need to change a lot. And did I get some help from the meds I was on? I am sure I did, but I can’t blame being morbidly obese on them.

My life is my fault.  And maybe if I didn’t weigh so much , my Meganitis would not be as bad.  Who knows?  All I know is that I need to do something that gives me a fighting chance at feeling better.  Everything is connected.

The absolute worst thing about all of this weight shit is I did it to myself.  Its completely embarrassing being this gross thing that I have become.

Sometimes, I just don’t know who I am .  Like there is a version of myself I see in my head and she sees the outside and can’t get out or be heard.  I know I am a crazy person.

I just want to be happy.  Happy in myself, happy with myself, Happy in this life.  I just have 37 years of failure to contend with. Isn’t it awful that more often than not, we are our own worst enemies?

Cheers to new hopes on the horizon…

 

Just Keep Swimming and Don’t Stop Believing,
Xoxo Meg

 

 

 

 

 

Yes, I need to take a Nap

You read that right, I am a 37 year old mom of 3 who needs to take naps.  So damn what?!  As I am sure that anyone with chronic pain issues will understand the utter exhaustion that grips a hold of you every day .  While I am not experiencing the pain I have been as of late, the exhaustion never goes away.

I was recently outfitted with a CPAP machine.  I have “Severe Obstrusive Sleep Apnea”.  I went into it imagining myself like Darth Vader with my mask .

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Instead, I am more like Dark Helmet.  If you have seen Spaceballs, you know what I am talking about, and you have a wonderful sense of humor!  Anyways, my point being, my hope was that when I got the mask I would have all this energy and be full of life since I was sleeping better.  And yeah, no, not quite. Don’t get me wrong, it is definitely helping me.  My first follow up with the sleep doctor showed that I went from 66 times an hour not breathing to 1.2!  Pretty impressive… but still the exhaustion remains.

Just another symptom of Meganitis.

So yes, when I need to take a nap , I NEED to take a nap.

It is my hope that my exhaustion will get better.  But for now, I am a sleepy head.

I have to learn to listen to my body .

Easier said than done.

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You think you know, but you have no idea…Real World : The Unknown Sick

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This week has been particularly awful as far as my Meganitis goes.  This is the most pain I have been since this whole thing began.  On the positive side though – I started the actemra this week after several rejections for this and other medications that might help.  Just in time too – my inflammation is way up, blood work was high.  Down side is that it could take 3 weeks for this to kick in.

So, my life right now is just ugh.  I have been trying to be positive about everything but the struggle is real.  It is very hard to maintain any sort of joy when you are in constant pain.

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To be honest, I started this post last week, its been sitting here brewing, all my thoughts jumbling around my brain.  I want to say so much but its just hard to get out.

So yes, last week was one of the worse on record for me.  In addition to the excruciating pain, my inflammation was “way up ” per my doctor.  I started my new medication, I am doing Actemra shots every week.  I have been rejected for other medications by my insurance company and last week came THE talk with my doctor .  You know the one, the one where the doctor says ” Can I be honest with you?” you say ” yes of course” and he says ” I don’t know what is wrong with you and we are trying everything I know . Nothing is getting better and you are getting worse. If this doesn’t work, we may have talk about if I am the right doctor for you or  a visit to the pain clinic”

To sum up :

  • No Stills disease which he previously said I had
  • Getting worse, not better
  • Inflammation way up
  • Actemra is my hail mary pass – if it doesn’t work not sure where we will go, co pay is $40 for a month supply, pricey , but if that is what it costs to feel good – so be it
  • My “foggy brain” seems to be fixed by switching my Gabapentin to a different med at night ( I guess 1500 mg is a high dose?) That I have definitely noticed a difference.  I was not as forgetful and felt like I had a clearer head.

I capped off the week taking time off from work to rest.  I have to say, doing nothing for days was exactly what I needed to recharge. I did my second Actemra shot last night and returned to work today .

It is so hard not to allow this demon sickness to take over my life.  It has so much become who I am and I fucking hate it.  And as much as I hate it, I don’t know how to change it.  My day to day depends on something I cannot even put a name to. I have no fix , I have no cure, I have no name .  I am a guinea pig after 9 different doctors.  What is the most shocking is that these are the best doctors in the world and they still do not know the cause of this.  Its getting old hearing ” maybe they will name a disease after you …” Like fucking really ?

I have to think about every step I take,  and if the pain is bad enough, I have to think about how I will sit, how I will walk or hobble.

It sucks being in constant pain.  It sucks being constantly exhausted.  It sucks having skin that feels like it is on fire.  It sucks having your armpits swell and hurt.  It sucks when your neck hurts.  It sucks getting random lumpy lumps ( thank God, I have not had in quite some time )  It sucks looking at yourself in the mirror and seeing a completely expanded distorted unrecognizable version of yourself.  It sucks not being able to move and exercise to make yourself the person you knew.

Pain is ugly .

Pain is strong.  Much stronger than I thought.

And I am weak.

I keep trying to find the way.  Any way that I can resume my life and get out of this mud filled funk.  I hate feeling the way I do .  And I know , you are probably saying , suck it up , or change your life then, but if you have ever been in never ending pain, you know it is easier said than done.

Like seriously , when will it end?

Soooo, bringing us to today :

I actually feel more better today than I have felt in a very long time.  I want more than anything to declare my love for this medication , thinking that it is responsible for this feeling, but the pessimist in me tells me to hold off on that parade just yet.

I felt better today and that is a small victory that I will take and hold on to.  I have gotten much better with the acceptance of the little victories instead of getting pissed I am not well.  I can only hope that I will continue to go up from here and not slip back down into this pit from Hell that my life has succumbed to.

I like to think that I am a strong person, but to be honest, I just want to curl in a ball on my bed and wait for this to pass over.  Wishful thinking …. that it will actually pass.   I have definitely become more of a headcase through this, which sucks.  I am looking into therapists to see if that will help me at all.

I don’t feel normal.  Like what do you say when someone says ” How are you ?” do I lie and say ” Great ! Never better !” or do I tell the truth and say ” I’m in a shit ton of pain with no end in sight, how you doin’?”  Then I have to explain everything, which for folks to understand what I have going on, I have to do it.

Maybe I will print out cards to carry around with me….. ” Meganitis , the bad and the ugly, there is no good…”

I think of my mother everyday and I how I want to make her proud.  She dealt with so much medical crap, I don’t know how she did it.  I wish I had one ounce of her strength .  She dealt with so many things medically and she never let it affect her spirit.  Mean while my spirit seems to be sucking me away like the bad spirits in he movie Ghost

 

ghost bad guy

Yea, this is me, lol

Mum didn’t stop believing and I have to believe there will be better days to come.

Until then, I will Just Keep Swimming… cause ….

just keep swimming dory

Don’t Stop Believing and Just Keep Swimming , feels good to say them together .

Good words to live by, guess I need to take my own advice…..

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Surprised on a Sunday

Today started like any other day. Woke up , sore as hell.  Exhausted even though I went to bed early.  Hubs got me a coffee, which was wonderful.

I had the thought that I wanted to go see Mum today . I haven’t been to see her in a while, which I feel terrible about. So I figured ,its warmer today than it has been, so today is the day to take a ride over to the cemetery.  I did some tidying up and asked Maddie if she wanted to go for a ride with me.

I called my dad to see if he would be around, figuring that I would stop by to see him after we stopped over to see Mum.  He told me he was on his way to Salisbury to look for some snowy owls.  You see, my parents have been birders my whole life.  When we were kids we would all reluctantly be packed into the car to go look for birds.  My parents , bribed us in their own way.  To keep us interested, different birds were worth different amounts of money.  Hawks got you $.25, Owls were $.50 and eagles, well eagles were $1.00!!  I got blessed with really good eyesight.  While,my parents and sisters have all had to wear glasses, my vision is still very good.  In fact, I acquired the nickname ” Eagle Eyes” when I was a kid.

Maddie loves animals, loves owls .  We keep talking about how Papa will take her to find some owls.  So,my dad suggested that we meet him to go see if we could see some owls or anything else we could see.  We are on our way and he calls me to say he has found a snowy owl.  Not sure if it will be there when we arrive, but we are going to try .  Maddie and I drive over to the Salisbury reservation and meet my dad.  We pull up and I can see his telescope all set up next to his car, facing the marsh.

He tells us where the owl is , its pretty far out, but he tells me where to look, and I can see the little white spot without the binoculars or telescope. I look with the binoculars and there he is, a snowy owl sitting on top of a wooden structure in the marsh.  I show Maddie where to look and it takes a little bit, but finally she sees her first Snowy Owl. The look on her face was so precious. It was exciting for me too, when I was a kid, I had only seen 1 snowy owl.

Its low tide and we decide to check out the seals.  The seals are always on these rocks in the mouth of the river right before it goes out to the ocean.  You can usually catch them lying around with their big fat bellies . Excited due to low tide and the fact we have not only binoculars , but the telescope, its going to be awesome to see all the seals.

The seals were my favorite part of the birding trips when I was a kid.  I wanted to be a marine biologist . I wanted to be the person swimming with the killer whales at SeaWorld.  I gave up that dream a long time ago, but I was horrified to learn of the gruesome conditions the whales were subjected to at SeaWorld. Check out the Blackfish documentary if you don’t know what I am referring to .  However, my boys have reminded me that I could still be a marine biologist , I could still go back to school.

We head over to see the seals, and what the hell -there are NO fricken seals!!!  Never had I gone in the winter to see the seals and there has been none. It was such a let down.  Honestly, it was very strange.

We then traveled over to the Parker River Refuge on Plum Island to see if we might be able to see some more birds.    One of the tell tale signs of something to see is when you see a bunch of cars and they are not in a parking lot.  Sometimes they are lined up on the side of the road or parked in a weird way.  We find one of these spots.  We pull up and ask a man with binoculars if there is something to see.  He says there are 2 snowy owls.  One on a post near us and one on an Osprey post further away.  The closer one was pretty easy to see .  Maddie was able to see it.

 

Maddie checking out the owl

Maddie checking out the owl

We then went to see the other owl we were told about and lo and behold, sitting atop of the Osprey post was the owl.  It was pretty cool.  We decide to drive to the end of the island and see if there is anything else.  My dad spys a little white spot in the marsh, I take a look and to me it looks a blob of snow.Dad takes a look and says yup its an owl, I can see it eyes. I couldn’t.  But when it started to fly that kinda sealed the deal that it was an owl, lol.

We saw a total of 4 Snowy Owls today.  It was really special for me and I know it was for Maddie.   After we left Salisbury we stopped at Dunkins before heading to Plum Island.  While waiting, my dad turned and said to me ” you said you wanted to see Mum today, and you did”  I hadn’t looked at it like that but he is totally right.  My whole life looking for birds, I have only ever seen 1 Snowy Owl, and today we see 4.  Call it what you want, but I think it was a sign from her. A really great surprise today .

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The Last First Thanksgiving

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We are on the cusp of the Holidays.

I am dreading this. How do I do the holidays without my mom? I know , I know, people lose people every second of every day, I am no different. I have lost before. It royally sucked when my sweet Gram passed in 2015.  And that year the Holidays were hard, but how do I do this?

For God’s sake, I can’t even write about how I am even going to begin to deal with this and I need to figure it out asap.  I just don’t know.

My daughter and I watch the Voice every week.  Our favorite is Janice Freeman, if you have watched it this season – you need to discover the absolute powerhouse that is Janice Freeman.  That being said, Janice was last to perform last night, well after my daughters bed time.  Right before Janice was about to come on, my daughter walks out of her room in tears, clutching her bunny she made with Nana, crying about how much she misses Nana.  Breaks my heart every time.  I kinda think it was Mum this time making sure she got to see the person she wanted.  I know its a stretch, but hey,I will cling onto anything I can , lol.

I am terrible at this. I really am . I need to be the one there for my kids when they are upset, especially when it is about Nana, and instead I am joining in the cry . Or crying everyday.  Like, when does this get better? When does the pain subside? I want to make my mom proud .  I feel like I was such a let down in her life.

I gotta find my way in this world and I don’t know how to take that first step.

I love writing this blog, It is such a release for me.  I think its time for a revamp, hopefully in the coming year, I can give it a fresh makeover.

Hope you will stay along for the swim.

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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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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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