I just want you to live a happy life.
Even if I’m not in it.
But won’t you have a happier life…
If I’m in it just a little bit?
I just want you to live a happy life.
Even if I’m not in it.
But won’t you have a happier life…
If I’m in it just a little bit?
I dream of many things.
But most of all I dream of a world where I no longer suffer.
Emotionally. Mentally. Physically.
That would be wonderful.
I’m trying my hardest to make that a reality in this world.
Let it happen…
I’m not going to write about it.
The disconnection. Or lack there of….
You know what I’m talking about.
I can’t. I’m not going to do it.
There’s only so much privacy in this world, and though I know you’re deep inside my heart, there’s one place you’ll never fully be.
In my head. And some thoughts are just better left kept to ourselves. My current thoughts on you and yours need to remain unsaid. Unshared. Not uttered into the depths of the world wide web. Said only to myself in the rare moments I’m left to my own devices.
My feelings aren’t here. My thoughts on you and your decisions. And they won’t be. Not anymore.
Keep checking, though. Because reading between the lines is what you’re best at.
Read on, baby. I’m waiting for it all to get better.
I know that I’m lucky when it comes to medical treatment, and I’m ever so grateful for what I’m given.
That being said, it’s still scary whenever treatment plans change. I’ve been very sick the last few months, and unfortunately came pretty close to being admitted full time to the hospital. That was scary. I preferred to treat at home, though another hard crash/flare up and that likely wouldn’t be MY choice again.
A few weeks ago, after multiple rounds of antibiotics doing nothing for my system, and even having an allergic reaction to one, we decided to put me on steroids again. This time I agreed to 30mg a day, taper down on a 12 day program; 20mg a day for a few days, then 10mg the last few days. Two days from now that program would end with me taking my last 10mg pill.
The first day I took prednisone, I was BACK! Completely different person than I’ve been the last 5/6 months! I was up and going for days straight! Sleeping normal at night, it was like a miracle drug entered my system! The swelling in my body was gone within my first 30mg, and the new few days I looked better and better!
Then I tapered down. And it was hard. Just 10mg down – From 30mg to 20mg. My sinuses started to swell again. I saw a specialist (ENT) about my chronic issues in my nose and throat. He said it was the Trigeminal Neuralgia and Fibromyalgia. These two, along with my rheumatiod disease, I’ll deal with the discomfort and pain in my head and face for the rest of my life. Fun.
Bedtime came, and I was exhausted but couldn’t sleep as well. I was exhausted after doing something as simple as eating a piece of fruit. Who needs to nap after eating a handful of food? This lady!
So, before tapering down again, I called and left a message for my Dr, letting him know my symptoms were returning. My lungs were getting the sensation of being filled with cotton again. My throat feels huge. My knees were creaking. Everything that was putting me up in the hospital on a large scale had returned on a small scale, just 10mg down. And I was to taper down and off these meds?
I’ll die. I will die. I could feel it.
The issue with autoimmune diseases is that they attack your system. Turn off the immune system with steroids and I feel like the hulk! Take some of that away and let the immune system peek back in, and BOOM! It’s attacking me again. It’s scary, it’s painful, and it’s not what anyone wants. But looking term steroid use on a high scale is DANGEROUS!
So today we sat down and discussed my options.
My digestive system doesn’t work: We need to continue to treat gastroperisis, all my food allergies, and the suspected crohns. We’re trying to get me into a new GI. So we continued multiple meds for this alone. I have 5 pills I take multiple times a day just to manage from my mouth to my tailbone.
My immune system is in fill attack mode, and it’s obviously on my respiratory system right now. Last we checked my rheumatiod factor it was 15, which is right in the boarder of needing immunosuppressive therapy. Based on my symptoms, on the drug reactions, and my body acting up immediately after lowering the steroid, we decided it’s time for me to go back on drug therapy for my rheumatiod disease.
He wanted me to go on Methotrexate, or another stronger medication, but I chose one I know my body can handle; Plaquinel. We’ll keep me on 10mg of prednisone as a stabilizer, and add the plaquinel to control the immuno-attack response.
Now, this is scary stuff for me, because this is my first time being on both. I’m aware that it’s common for treatments for illnesses similar to mine, and I’ve watched this combination work great first hand. I’m still very nervous, because it takes time and my body adjusting to these changes.
Not only this, but this mixture will completely shut down my immune system, and I’m going to be susceptible to getting very ill from acute bugs. This means viral or bacterial infections are that much more dangerous, and this scary flu bug going around is terrifying!
I’m very scared what this means for my social life temporarily, but I have a good feeling overall. I think we’ve made a good decision in the long term treatment of my life.
When I went into my Drs office today, I didn’t plan on leaving “double dipping in the immunosuppressive therapy drugs”, but I feel as though this approach is much better for my body and long term treatment plans.
I need to reach back out to the local Rheumatologist and let them know I have taken a turn for the worse, and need this type of treatment. Knowing that I’m actively needing treatment might push them to take me as a patient, even though they’re “full on the amount of Medicaid patients they can take right now.”
I simply don’t want to die. I don’t want to greet death this young. I don’t want to leave my babies behind AS BABIES. The medical community has a hard time taking care of the chronically ill, and we have to work extra hard to be taken seriously. Because the type of medications we’re trusted with at home, we have every chance to abuse the system.
It’s painful to me that so many abuse a system put together to save our lives, and double dip in other ways, such as going to two different doctors for the same treatments and same medications. This puts a damper on patients ability to get treated, because as long as I’m seen as “taken care of” I am swept under the rug by so many specialists. When in reality, I’m barely holding on, my Dr is just trying to keep me alive, and the specialists should be taking me in.
Today was emotional in that I had to make a very serious decision on my health, and my life. It’s hard and I wish I didn’t have to make these decisions. I’m so incredibly lucky to have a great Dr that listens, takes me seriously, and knows I’m not a DRUG abuser. Knows that when I come in saying that these steroids brought me back from the dead, I’m not seeking to get high. I’m seeking to find a way to keep me alive.
I’m human just like everyone else. If that means I have to take double the immunosuppressive therapy to get up and do my damn laundry… then so be it. It’s worth it.
The room is dark, but I can still see you. Always a beacon of light in my darkest of nights. My skin is warm.
It’s warmer in each spot where you touch me. Skin to skin.
One hand resting on my left cheek, the other interlocked with mine. I tuck my extra arm under my chest. Legs interlocked. Face to face you smile at me.
I blush and close my eyes.
We would often lay like this on the nights you would grace me with your presence. Always promising ourselves the next meeting would end our silly little love spell we had on each other.
Both secretly knowing this wasn’t at all true. Though it ended so ugly.
I can feel the soft coarseness of your stubble on my cheek as you lean in to kiss me, soon followed by the softness of your pressed lips against my pale freckled skin. It tickles, and I scrunch my face in automatic reaction.
You often tell me how adorable you think I am, and how much you love my face. You beg me to refrain from makeup. Tonight I have.
Wrapping your long arm around me, you pull me in to a skinny bear hug; of course I’m not skinny, you are. You kiss me all over my face and look deeply into my eyes. You tell me of your emotions for me, and your love for this moment, brushing my hair out of my face.
You thank me for choosing you. For letting you into my life. I thank you in return. I touch your chest, and you..
…are gone. It hurts too much. These memories. I wish they would go.
Though I’ve said these words before to another, I’ve not ever felt the pure emotions before, and the holes left in my heart are bigger in your absence than I’d ever expected. It’s unfair.
I am mending, don’t get me wrong. But the time it is taking is far longer than expected, and the web I’m spinning over the gaping hole in my heart has many holes. It’s impossible to keep my ache inside.
I touch my chest and tears stream down my face. I can’t stand that I’m this weak, and this upset, this far out. It’s been over a year, and I’m so angry at myself!
I’m better than this! I’m not weak! I’m not mushy!
I’m usually far more controlled, and had it been ANY other, I’d have forgotten about this emotional nonsense long ago. So why does this still linger?
Because it’s for you. Because you were many things to me, and not just one. Childhood friends, so much like family, and then more. So no matter how my heart beats, it will always beat for you.
Which I find highly ridiculous. By the way…
I touch my finger tips to the edge of the fabric, touching barely to the tips of yours, while my others are sprawled across to the other end. My legs pulled the black fuzzy blanket up above our bodies.
“See?” I asked you, ” It looks like stars.”
You peer over at me with such joy and happiness in your eyes. Eyes I have known so many years, yet had never seen dancing in such a way.
“Yeah.” You responded, kissing my face. “It really does! It even has constellations!” Pointing to a cluster of stitches.
We played in my blanket stars for awhile that night. It was heaven.
I’ll never forget these moments. The ones that are stuck in my memory. The ones that come when I’m half awake and something tickles my face. Or my body feels warm in just that certain way. Or I get a hint of that specific smell.
Each time it will bring me a hint of love, and happiness. But each time it will poke an extra little hole in my heart. It will tug at those strings I’ve formed, and the mending I’ve done. It will hurt. My hole heart.
Because as much as I have tried not to. I love you with my whole heart.
Dear healthy friend and/ or family member who responded with a big, “I’m so sorry” or “That’s just so sad!”, or whatever kind of sympathetic dismissive words toy chose when I informed you of my cellulitis that’s now in my lymphatic system:
Sympathy isn’t something I really want, or need. I was more sharing what went on so you could understand. I know it’s weird and stuff for you, but it’s almost normal for me. Scary, for sure. Don’t get me wrong. A terribly awful day… But it’s nothing I haven’t been through and won’t go through again. I’ve lost so much weight the last month, and gone down two pants sizes. I’ve barely been out of bed, and come to find out my feeling like I was dying is because… I really was. Not because I’m dramatic, or want attention. What a concept.
I need more understanding and less good thoughts. I need more help and less prayers. I need more love and less hopes and wishes of me getting well. Good vibes are great and all, but good vibes don’t clean my shower of bacteria. Or do my laundry I can’t keep up on.
Be realistic. I’m going to be ok this time around, but what about the one time I’m NOT going to be ok?
How much will you regret not being there for me? Because if the roles were reversed, and I were still healthy, I’d be there for you. You damn well know it.
I’ve been there for so many of you. Even in my sickness and health. I’ve been sick since 2011. Have I been there for you in any way shape or form since then? I’ll always be here for you, whatever you need. If I’m capable, you got it. That’s just the person I am. Even now! Can you please do the same for me? I’m in so much need right now. So much pain. I’m actually falling apart, from my insides to my skin. Literally, there’s holes in every bit of me.
Sincerely and utterly desperately broken,
I started this year off sick, alone, and miserable.
It can only go up from here, right?
Yesterday I was in the shower, attempting to get clean and get some energy to be with people. My back was hurting wad fiercely, and my muscles were so weak from days of not processing food, and vomiting, that I nearly lost consciousness.
What kept me from passing out was turning the water from warm to cold very quickly, and giving my senses a shock. Luckily I was on conditioner by then; I quickly rinsed and stepped out of the shower. My bathroom was a mess. Covered in messes from my 4 kids. My body ached so bad, stomach hurt and the urge to vomit was overwhelming.
I’m very ill right now, and my body is nor handling it well. I’m tring very hard to get through this, but I also feel so guilty! I feel like such a burden when I lay in rest, and try to recover. Sometimes I’m ok for days and weeks, and other times I’m in bed for weeks.
Yesterday I was out of bed ling enough to realize showering this ill without someone down here could result in my passing out, and causing serious damage to myself and this house. Not a good thing!
So this year I’m going to work on staying within my limits. Without guilt.
I’m going to work on being alone without feeling lonely. Inevitably. I don’t think I’ll meet anyone who can be with me. I simply don’t.
I will work on teaching my kids better house keeping so I don’t slip on wet floors when I almost pass out in the shower.
Day one wasn’t the best. I’m having a rough day. But it’s just one day. We always have tomorrow.
I’ll be sure to let my kids know that no matter what… I love them. They’re amazing! They’re my favorite humans! I’m so glad they’re mine.
Taking Chronic Illness one day at a time.
Living Incurably Despite Chronic Illness
Not all wounds are visible
Connect, Learn and Inspire
Barbie girl living in an Autoimmune world.