Things to Think About

Days Like Today Are The Hardest

Sup yo.  How is everyone doing tonight?  I know it’s been a while since my last post.  Sorry about that.  Things have been kinda crazy as well as I have dealing with quite the Meganitis Flare.  Yup, full on FML mode.

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So , yeah the flare is super great.   After 4 and a half years , I still have all the same symptoms ( except the rash, thank God ) and still no answers.  I live in constant pain, some days are better than others. And I have come to accept that Winter and the cold make it worse.  I feel better in the warmer months, I would love to realize that I am in no pain, honestly don’t see that happening , but a girl can dream.

As far as my weight loss surgery goes – its great, down 80 lbs!  I need to work out . That has been difficult since the daily pain plagues me.  But I keep trying to make better choices , definitely navigating better though.

Which all brings me to today … I am determined that this will be the year I put a name to what I refer to as Meganitis.  My rhumetologist is great, but I feel like we keep going in circles.  The plan has been to treat the symptoms rather than dig deep and get a diagnosis.  And, I was okay with that . I just wanted to feel better.  But now, I am at a point where this bitch needs a NAME!  I feel like if I have a name for this – I can effectively treat it.

I am all out there. I wear my heart on my sleeve, I cannot keep shit in. I am very open about my condition and my struggles. The reason I am so open about it is, what if that one person I share my story with has the same issues or knows someone that does. I do not want to miss out on the opportunity to gain knowledge about this or to help someone with what I have done to cope.  In being so open, people always have always told me that I have this or I have that , or I need to do this or I need to do that .  As much as I appreciate everyone’s concerns and I know that everything comes from a place of love, none of them are doctors.  But, what I do is take the information people send my way and I do my own research as well as discuss it with my doctors.  Sometimes its a very easy answer why XYZ isn’t my thing and sometimes, its like okay , lets do some tests and blood work and see what comes up .  Normally , I would say that doctors throwing shit at a wall to see what sticks would be insane. But I am lucky that my doctors are all in agreement that I am a unique case and listen to my concerns.

This all brings my to my latest appointment today .  Blood work .  My PCP is doing a whole complete work up and according to the records, giving me tests that I have not previously received. With so many doctors in different locations, something gets lost in communication.  I get it.  It happens.  But that’s also the reason I have my binder of  tests, procedures, and surgeries.  Someone’s gotta right?

My mother has been on my mind lately , more than usual. It hit me like a ton of bricks today .  You see, every appointment, every lab visit, every text or email from the doctor, I would call my Mom when I got out.  Just to tell her what happened or what was happening or the plan for the next visit .  Talking to her always made me feel better, most of the time I leave frustrated and she always knew what to say to ease my mind.  I walked out today and grabbed my phone to call her.  Like auto pilot.  Cried all the way back to work.

Grief and loss , I have yet to find the way to deal with them in  good way . Mostly I am just a crier.  I miss her so damn much, my heart hurts. I know she is around, I do get her signs, but nothing will ever be the same.

I read this today on a Grief and Loss page and it really struck home.

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Go ahead, have a good cry . I know, you feel it too.  I miss her immensely, but it really is these little times that creep up and hit me hard.

I really am focused on getting answers this year .  I just hope I am successful.

You know what I say … Just Keep Swimming!!!

Until next time folks !

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Things to Think About

1 Month Since Surgery

1 month

 

It has been a month now since my surgery.  It has not been an easy month, but I am glad I am on my way.  Navigating how much to eat has been the hardest challenge.  I have been eating the same way for 38 years , its not so easy to change it.  Figuring out what to eat has been a challenge too.  And when to eat, and eating itself.  All the chewing……

I have been sticking to my shakes , chocolate for the most part.  Its so much easier to get down than the vanilla.  Protein bars and greek yogurt round out my days, then dinner is usually something chicken based.  I am feeling good overall.

I need to get exercising more. I have been out walking, but I think this week I will start some home workouts.  Or at least try.

My Meganitis for the most part has been at bay, which is amazing.  I still get exhausted and my fire skin is still raging, but the whole body soreness has gone away .  Well, except for the arthritis in my knee.   I am hopeful that as I lose more weight, my knee will feel better.  And I am sure exercising will help too.

Anyone out there have a workout app or program they use at home that they swear by ?  I know enough things I can do myself, just looking for a little guidance I guess.

Cheers to a new week!

Don’t Stop Believing and Just Keep swimming !

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Things to Think About

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

 

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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 ….

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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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Things to Think About

Cara Box Reveal

I like to read other blogs, as I am sure many of you do as well ( and thanks for choosing mine!) One day while reading a blog, I found this link for the Cara Box Exchange  .      It is on the blog Wifessionals which is written by this gal Kaitlyn.  She is an expectant mom and army wife.  You sign up and Kaitlyn matches you up to other bloggers.  Each month has a theme and you send a box to a blogger and a different blogger sends you a box.  Its just a little box with things you think they would enjoy.  But what I found was the best part was getting to know these great ladies I was matched up with!

First, I met Susan.  She is the mastermind behind The Bored Zombie.  It is this awesome blog where she creates quilts, crafts, sculptures, the creativity is out of this world.   She just did this quilt that I absolutley want .  I don’t know how she does it, but man is she amazing.  She is making me want to break out my sewing machine.  Not that I would be the least bit as close to her, but she is inspiring! So, we chatted through emails .  She sent me a box .  This is what she sent :

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I got this great box with some fitness magazines, a cookbook, some body stuff, a box of Star Wars Cards ( kids love these!) and my fav – the Legos with a Shark!  Check out Susan and her awesome blog!

Next, I met Hayley.  She has a blog about her family and her life.  She keeps a blog instead of scrapbooking.  I think this is such a great idea! This is the box I sent her.

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This was a great experience and I am so thankful for the new friends I met.  Sign up and try it out!  Don’t forget to show these bloggers some love too!

I am loving this whole blog community and all the support everyone gives each other.

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