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.
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.
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
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 ….
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…..
I feel like Kurt is a good way to express myself. I am a huge Nirvana fan .
I feel like every day I am faking it.
Faking that I feel good.
Faking that I can handle this.
Faking that I am not brokenhearted.
I am trying to suck it up and deal with my daily pains. I have moments where all i want to do is go to bed. I have moments where I feel fine. I have moments where I want to remove my legs and hang them on the wall. There is nothing I can do. Changing meds hasn’t helped . There is no cure for the fibro and if it is RA ( or a variant of it ) , there is no cure for that either. Its just one of those things that people deal with I guess.
To be in pain on the outside hurts and sometimes it feels better. But to be hurting on the inside is a whole other ball game. I would take 1000 times the pain on the outside to alleviate this pain in my heart.
I have hurt before, for years I have been in a depression I guess in the clinical sense of the word. I Could not see the light. I feel like the light right now is hiding behind the shadows. I know this is not how my mother would want me to feel . I know she would say something crazy or something comforting or both. She had that way about her.
The reality is I miss my mother something fierce. I miss hearing her voice , I miss her hugs, I miss just knowing she is here. My mom was my person. My person I call when I am happy, when I am sad, when I have good news, when I have bad news , Mum was my person who could talk me off the ledge and make me feel better.
So, each year for the past 4-5 years I have been taking my son to the comicon in Rhode Island. Today they announced that Cary Elwes would be attending. My most favorite movie of all time is The Princess Bride. So, of course, who do I call to fangirl too? I can hear her going ” oh how cool is that ?!” Not that my dad didn’t have pretty much the same reaction, but its not the same.
I am trying to figure out my way in this world and how to best honor my mother. I’m at a loss.
I need to get myself together, and get back on track. Just trying to figure myself out.
This blog is about me and my journey, so I thought I’d share some of me with you.
That being said, for those that know me, I am an outgoing goofy kinda gal. Always cracking a joke about my weight. Most of you don’t know that I have suffered from depression since I was a teenager. I am not talking teen angst depression, I am talking attempted suicide depression. Yes, I tried to kill myself when I was 14. It was a stupid thing to do, I am forever ashamed. I am thankful I was unsuccessful. I am forever sorry for what the experience did to my family, especially my parents. I remember being terrified in the hospital as they pumped my stomach. It didn’t help that they put another person in my room who had to be restrained and was freaking out. The doctor told me had I had waited to go to the hospital, I would of died. Now, is that true? Probably not, but it sure as hell scared the shit out of me.
Pile in the depression with my self esteem and I am a therapists dream. I had a therapist, he was great, and my prize for being fucked up was a stop for truffles at Sanborns Candies on the way home from the session. You ever notice that all therapists have the same way of talking? That drove me insane, not mine, thank God. That being said, I probably should go back.
Born from my depression was one of my greatest passions, writing poetry. Hence the name Morbid Megan. My friend Amanda’s mom named me that 🙂 I love to write, though I find I come up with my best stuff when I am having a bad day. For the life of me, I can’t write anything happy or cheery. And honestly if I am not riddled with depression, I can’t get anything out. I love the release that writing gives. Most of what I write is about me, sometimes about things I know of, and sometimes shit I randomly think of. When I was in the 8th grade I wrote a poem about a kid who goes beserk killing his family just leaving his little sister. Yes, I know its fucked up, but I won the Write Away Contest ( after I submitted a letter that I was not crazy or suicidal). For me, to know that people appreciated my work was an amazing feeling. Its fascinating when something that is organicly you is received well.
So, I continue to write, just for me, to get it all out. Here are a couple if you are interested :
She feels the darkness roll in like a fog on the water when the day breaks An inexplicable feeling But not worth the deaf ears the words should fall on Like sand blowing from her lips as the words are said So she shall stew in quite solitude Screaming on the inside, the darkness trying to crawl through Clawing and tearing As if dear life could be sustained here, more like her own purgatory There are no reasons , no thoughts, no concerns, no feelings It just is A living breathing entitiy that she shall never be able to shake Demons that wither away at her very being True undeniable happiness seems so lost And maybe its not this deep dark depression that takes her over Maybe she is just lost Searching for something she will never find and can never have She screams in the middle of the night She screams at the top of her lungs She screams in silence in her dreams She screams like she did when she first begun Searching and questing for something A purpose A meaning A place in this world To make a difference in someone’s life To witness something amazing To BE someone Amazing Maybe she is experiencing a mid life crisis Maybe she’s not Maybe she’s being dramatic Maybe she’s not
6/30/11 Crackling as I walk I feel the pieces crush beneath my feet Aimlessly wandering A lonesome soul on a desperate search To find the things she left behind, things she lost track of Mainly herself and her abandoned dreams This perception they hold is so wrong, but its the only thing she’s given, so what do you expect them to think? She is just a silly girl with silly dreams Wishes and wants that never pan out There have been blessings along this road she wanders Wonderful wonderful blessings This dark veil shields her eyes to the beauty and keeps her drenched in the dark She can open her eyes, she can open her heart She can put out an APB, she can put a face on a milk carton But she has yet to find herself after all these years And what happens when she loathes the “ found” self just as much as the lost one? Feeling like such a failure Such a horrible horrible failure A feeling no matter how great the success, she cannot shake
So there you have it – some depressing poetry courtesy of me. Hope you enjoyed.
Back to the point – I am journeying to find myself. I was only 17 when I was told of my impending motherhood and only 18 when I had to become an adult in more ways than 1 . The more I think of it, how could I have myself figured out? I know that I am a wife and a mother to 3 amazing kids. But I don’t know WHO I am. My identity was a mom and it was not about me before it ever was, does that make sense? Don’t get me wrong – MOM is my greatest and proudest accomplishment .
I KNOW I am fat.
I KNOW I was skinny.
I KNOW I am committed to losing weight and getting fit.
I KNOW I have found the right program for me.
I KNOW I need to eat better.
I KNOW this current state is not what I AM and is not me.
I KNOW I WILL KEEP SWIMMING AND BUSTING MY BUTT TO GET WHERE I NEED TO!