Things to Think About

My Sleeve Gastrectomy Journey : Day 4

115Hello Everyone!

 

I woke up on the morning of June 19th early.  We had to be at the Brigham and Womens Faulkner hospital for 8 am . We left the house at 6:30 am since Boston traffic is so great in the morning – ugh.  We got in and checked into registration. At this point it was about 8 am and my mouth was sooooo dry , I just wanted to have some water, unfortunately not allowed.  But I was okay since surgery was scheduled for 10:05am , so I could deal.

After registration it was off to surgery check in.  I checked in and shortly fter they brought me to start getting ready.  Hubs had to wait while I got setteled. So all the usual jazz is done,changing , making sure all my info is correct, makng sure I am all ready for surgery.  At some point a very nice nurse came in and said ” Hi . I will be helping Sue with your IV.  ” Then it hit me, the nice nurse hat had been with me was named Sue.

Sign  #1

Now I had a chat with my mom before all this , and this was by far , her sending me a sign.  Then more doctors and nurses came in to introduce themselves.  Wouldn’t you know it – another nurse named Sue and a doctor named Frances.  Now, If thats not a sign -I do not know what else is.

At that point – I was fully convinced that my Mom was right there with me and everything would be ok.

I did go into surgery after 10:05 , I think it was more like 10:20 ish, but I really don’t remember.  I remember waking up super sore and out of it.  My hubs was there and my dad arrived after with some beautiful flowers.

All I wanted to do was drink some water.  But it this surgery – its got to be sips.  I seriously wanted nothing more than to chug the pitcher of water and chew on the hospital ice.  You know what I mean, hospital ice , is like the best ice ever.  You know….

I had some great nurses taking care of me through my first night.  Jess and Gabe were awesome.  I had all sorts of meds and I had to keep getting Heprine shots every so may hours.  They stung and bruised .  First challenge was actually going to the bathroom.  I was told if I could not go on my own by 10 pm, then it was the catheder .  Now, i know a catherder is not something anyone likes, but when I had my daughter , I was severly traumatized.  They put it in wrong and the worst pain of my life endured.  I still remember the feeling. So I did all I could to make sure I went . And I did… 🙂  I know, pee is super exciting, but the night got worse.  So I was in and out of it, one time when I woke up I was super sick, kept thinking I was going to puke, but there was nothing to puke. In addition to , I had horrible gas pains, like awful, kill me now, gas pains.  At some point I am sure someone told me how they pump you full of gas during the surgery . Welp, I do not remember anyone telling me that gas could get caught and cause awful pain.  So, imagin pain like heartburn times 100 burning in the middle of your chest.  It sucked. I was about to grab a scapel and slice a hole in my own chest to let some gas out.

So the moral of the story is – night 1, sucked.  And I cannot say enough about my team of doctors and nurses, they were so great.  Thankfully I woke up the next day and felt so much better. I got some walks in and was able to start shakes.

The thing that I am honestly struggling the most with is my sips.  It doesn’t sound like something that one would struggle with but it is way harder than I expected.  I am supposed to have at least 64oz a day of fluid and 60-70grams of protein.  Definitely have not reached that yet, but each day it gets better.  Its weird constantly sipping, but I need to make sure I keep it up. I do not want to get dehydrated.

And shakes – I have got to get some recipes to mix it up.  Really, I would love to just have some potatoe soup.  I am a ways off of that.

So here I am , ending day 4, looking forward to Day 5.  Its definitly a journey .

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Things to Think About

Stopping the Stigma – Let’s Talk Depression

This past week the world lost 2 visionaries.  Their creative sparks burned out at their own hand.  I feel like we are seeing this more and more .  People have committed suicide since time began, but It seems to be an epidemic as of late.

b kind

I have battled depression since I was a teenager.  I often refer to it as my darkness or my demon.  Honestly , what started my depression was just usual teenage bullshit.  I hated the way I looked and I always thought I was ugly.  I wasn’t the one that boys went after.  I always felt second best.  I never did anything amazing or Incredible.  I liked to write my morbid poetry , which I still like to do.

When I was 14 , I decided I had had enough.  What motivated  me in that moment, honestly, I don’t know.  But I woke up for school and decided to swallow somewhere around 50 asprins.  After I did it I immediately regretted it and woke my mother up to tell her I did something stupid.  Parent freak out ensued as it should have.  They rushed me to the hospital where I got my stomach pumped.  If you have never had it done before, it is not a process I recommend.  Its sucks .  Interestingly, the room I was in when I was in the hospital as a double room.  My roommate was a very large girl who was restrained at her wrists and ankles.  Now, I have no idea what she was there for, but her guardian with her kept saying ” you should not of done that to your sister with a wire hanger”.

I wanted out of there.  But since I was a dumbass and tried to kill myself , it doesn’t work like that .  They wanted to send me in an ambulance to a mental hospital.  I fought my parents about the ambulance and they ended up being able to drive me.

I was sent to McLean Hospital in Belmont MA.  The admissions building was beautiful.  It took forever.  Once I was checked in , I was taken to the unit I would be staying at .  Now remember how I just said that the admissions building was beautiful? Well the unit – not so much.  It was a run down building with a mix of troubled teens to kids with severe issues. I clearly remember walking down the hall to go to the bathroom and there were several rooms with doors open and all you could see was a kid and a mattress on the floor.  It got better – I get to my room and my room mate is very vocal about Not wanting a room mate.   It was at that my point my knight in shining armor saved me.  My dad , he told them I am not staying there and that place as not for me.  My parents had to sign all sorts of paperwork since I was leaving against doctor orders, but man am I glad they did.  I was grounded for a while, actually confined to the porch, but I was so glad not to be there.

I had to go to , well, I was already in therapy.  Once a week on Saturdays I had to go . My mother would bring me, then on the way home we would stop at Sanborns candies .  We used to joke that going there and getting truffles was my reward for being fucked up.

When my oldest baby was born, I was still a baby.  I got pregnant at 17 and when he was born I was 18.  Instant adult.  It was not easy and I had many dark days.  My husband and I had our ups and downs and I am not going to lie, there was definitely moments where I thought it would just be easier if I was not around.  I wanted to give my child the best life possible.  And here I am , mom of 3 amazing creatures , still feeling as though , I have not done a good job.

I used to think about killing myself all the time, to be honest.  Something dramatic.  But even after I did try and take my life, I felt like a failure, couldn’t even kill myself right.   I feel like my life has not been stress free but I suppose everyone out there could say the same.  As much as I would fantasize about ending it all, once I had kids, there was just no way I could ever do it.  When I got sick and as the days, weeks, month, now years went by and I was in constant pain and at the mercy of this nameless disease, I really had some dark days.

Now , more than ever, I try looking on the bright side.  My mother was such a positive force , she went through hell and back , and despite all of it, she was a always a positive beacon.  My biggest cheerleader was always my mom.  When I lost her, I feel like a piece of me went along with her.

I struggle with my demon every day.  Some days she stays asleep inside and some days she is a raging psycho bitch.  I try to find the balance.  Despite being almost 38 years old, I feel like the demon will always be a part of me and who I am . The good, the bad and the demon, I guess that is me.

It is frustrating .  I feel like lately I do need some professional help.  I called numerous doctors that my insurance approved and said were taking new patients, but for the life of me, I cannot get anyone to call me back.  This is the start of where the system for mental health in this country is amiss.  Most people do not even recognize that they need help.  And when we do reach out, there is no assistance.

Suicide is the 10th leading cause of death in America. Each year over 44,000 people in America take their own life.  Its incredible to me that this number is so large. Being depressed needs treatment, instead there is this stigma that being depressed is bad.   We need to accept that these demons exist within most of us and we need to seek help when they start to emerge.  Its not easy , but there is a better way .

For a list of Suicide statistics, click here

We need to stop this stigma and speak up when we see someone in need.  Be the positive change in this world.

If you or someone you know needs help, please reach out:

suicide-hotline-1-800-273-8255-a-simple-repost-could-do-sc-much-29959231

Remember , through every darkness the light is fighting its way though on the other side.

ont stop bel

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Daily Rants and Raves

Onward and Upward

Happy Saturday Everyone!

Well its been quite the week. Starting off on Sunday, my daughter and I took a walk out in the woods with my Dad lookin for birds.  She has become quite the little birder.  My dad set her up with her own binoculars, a field guide and a journal to keep track of all the new birds she sees.  I need to start walking .  Its just pretty painful with my arthritic knee.  In any case, I did he walk. I was dying .  By the end I was saying ” Just Keep Swimming” “Just Keep swimming”  It was a whopping mile walk.  I know I know -sad.

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I know its not much, but it was a struggle which in itself was eve more motivating.  I know this surgery is going to be a big boost for me if I do it right and follow the plan.   I did get a couple of pics of a butterfly we saw on our walk.

On Tuesday I started my Pre Op diet and had my preop testing .  I stocked up on Protein shakes, bars and greek yougurt.  I as stressing about it, but now on day 5 – I am feeling pretty good about it.  Its crazy but I actually felt good walking out of the hospital this week.

Looking forward to the next week ahead.

Hows your week looking ?

 

Don’t forget to head over to Facebook and give me  like.

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Daily Rants and Raves

Continuing the Journey

Hello World,

you-are-going-to-be-great-keep-going-979195

How goes it?

Well, I have been continuing the weight loss surgery journey.  Latest steps were the Upper GI, which I thought was an endoscopy, so on the day of the procedure, I went to the endoscopy unit.  They looked at me like I had 2 heads, they told me I had to go back down to the ultrasound area.  I went there – that was wrong too. Ugh. Turns out it was an Upper GI and I had to go to this tiny room right next to ultrasound.

They call me in and I have to get into a gown and then they tell me I have to drink ” the stuff”.  Now, I had nothing to eat or drink prior to this, an it was later in the afternoon.  “The Stuff” is nasty.  I mean like heavy liquid chalk. It is technically called Barium something or other.  So they have me stand up against this table thing and drink, on command. I get shivers just thinking about it.  Then they tell me they are going to lay me back so I literally get to the point where I am laying down in this machine.

What better time to have me roll around ? Seriously.  Roll over, like I am a damn dog. A big huge, fatty mcbutter dog.  SO I roll over a few times , then I get to lay on my stomach and drink a different nasty drink  – with a straw ….. ooohhhh ahhhhhh.  Still gross.

Its over and the doctor tells me it looks like I do have a hiatal hernia.  My doctor had told me that this was common so I wasn’t too worried when they told me what they suspected.  Later that week, my doctor called me and told me that I do have the hernia and I also have a Schatzki Ring in my esophagus.  Never heard of that before, guessing most of you have not heard of it either.

A Schatzki ring, also known as a Schatzki-Gary ring, is a narrowing of the lower part of the esophagus — a muscular tube through which food passes to the stomach.

Now, I very rarely get heart burn or acid reflux.  I am not on any medication for them other than the occasional Tums.  But based on the Upper GI – I have to have an Endoscopy.  Like the real one this time.  I wasn’t too nervous – the nurse I had was very nice.  It’s weird, I had ” mild sedation” they said but all I remember is them putting the thing in my mouth so I wouldn’t bite the scope, then I woke up.  Nothing too exciting .

Because I am a crazy person, I am constantly checking my doctors patient gateway to see test results.  My endoscopy comes in and it confirms the ring , but then it starts in with some medical mumbo jumbo and I have no clue what it means. Even googling ( which is THE WORST thing you could ever do when it comes to medical crap ) and even then, I am still confused. So, I emailed the doc, then called, yeah, I am a pain in the ass.  He called me back tonight ( which I think is cool, that he called me tonight ) an told me that my endoscopy showed inflammation of my esophagus but it it not a deal breaker! I can still have the surgery !

Hooray !

I was really worried that it was something serious, but I am so happy I can keep on the path.

Next up the pre op diet – starting on 6/5.  2 weeks of the pre op diet to shrink the liver down .

Bring it on !

Whats new in your world?

Have a great week everyone!

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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 !!!

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Daily Rants and Raves

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.

o-HAPPINESS-IMAGES-HAPPINESS-PHOTOS-facebook

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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Things to Think About

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

 

 

 

 

 

Daily Rants and Raves

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 .

darth vader dark helmet meme

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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Things to Think About

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

real world

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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