- What is Scleroderma? (AKA "The Big S")
- The Spoon Theory
- Early Onset Symptoms
- Got Muscles? Got Weakness?
- Centromere B Antibodies - Scientific Stuff
- GI Involvement in Scleroderma
- Joint Involvement = More Severe disease. Great.......
- Fibro -My-What? Myth or Legend.....This ones for ...
Wednesday, June 30, 2010
Mama said there'd be days like this....
Now that I have that song officially stuck in your head, I will start off by saying sorry for being MIA the past few days.
I was in a little funk. I think I was feeling a little overwhelmed, well a lot overwhelmed. It almost felt like everything, every stressor in my life decided to give me a right hook at the same time. I was bruised and beaten for a few days. But I am back in action.
Life is a strange thing. Well, I should say life is an amazing thing. A wild ride sometimes, but beautiful and amazing. Our minds work in strange ways. How we process things and when we process things.
I struggled with if I should write about this or not, but in the effort to be true to myself and my journey, I decided to do so. I promised the good, the bad and the ugly - and ugly it may get at times, so to hide the dark times is not fair to the whole picture or the person out there that may also feeling dark to.
I have already shared with you all that I do not do well when I am tired. Physical fatigue I can handle, but once the mental fatigue door opens, let the games begin and I think I let myself get to that point.
I had been feeling pretty good lately. When I said good, I don't mean the "old" good, but good for me now which I am grateful for. Good means that I am always a little more tired than I used to be, always a little weaker and always a little achy. But you are able to push past it and live. That is good. I call it "the underneath" - underneath my joints are always aching but mild enough to ignore, push through and enjoy life....it is when it crawls out from "underneath" that it is more of a struggle.
I think that is what happened. I was tired from a few weeks of going. We had a few garage sales (That rocked!) and I was doing more than usual - so I think I got fatigued. When I get overtired, I have to admit I get weepy. So I was tired and weepy and IT crawled out from underneath.
My hands were in a lot of pain. The bones were hurting. It felt like someone was pulling my tendons into themselves. My ankles were really on fire. But I was still ok. We had plans to go bowling on Sunday and then I had my first fear moment.
I don't even know how to describe it. Rationally I know that I have been dealing with this diagnosis since October (9 months) but for some reason, in that moment my ego had a reality check and I was afraid, "What if I can't hold the ball". I don't think my fear was of embarrassment, because with friends (true friends) I rarely get embarrassed. And I don't think I was afraid of dropping the ball on my toe..... I think the fear was perhaps, this is my first extracurricular "My Life Has Changed" moment.
I know my life has changed. Life is always changing, and I have already grieved and let go of a few things, but this was my first possible "extracurricular" loss that I would face.
It just so happened that our friends we were going with got sick and we ended up not going, but something was triggered and I had a "I don't want this anymore" breakdown.
To be honest, I think it was a culmination of many things. I was tired, my hands hurt, I was feeling down about my weight, and life issues.
Like many, we have been affected by the economy. I have been out of work since October and we have finally - inevitably drained our savings (which ups that stress a notch). We are also facing making some serious decisions about our home. We live in Arizona, which means we are so upside down in our house that my backyard is in China (about 150K), the medical bills are now spilling in, so financially the stress is there. I have been handling it pretty well, I thought, but like I said - I think I had a reality moment and the rose colored glasses slid off.
I also heard some news about my brother. I love my brother so much, and believe me when I say he has a beautiful heart and he is a good man. But he is a good man with a horrible addiction to meth and alcohol. I am usually pretty good about not allowing myself to become to emotionally vested in the choices my brother makes. They are his to make.
I spent many years of my life trying to save him. I spent many years of my life taking care of him, letting him live with me, getting him jobs and trying to get him help. I love him. But I also love myself and my family, so I learned to not allow his life to overwhelm mine. Which works, until you hear from him... then all the emotion comes flooding back. It is heart breaking.
I was able to talk to him and find that he is MIA again and "living" in Portland. When I spoke with him he was higher than a kite and working on reading peoples minds. All I can/could do is tell him how much I love him - because the cold hard reality is, that may be the last time I speak with him. I am not trying to sound like an after school special here with the melodramatics - sadly, unless you have a loved one who is homeless and an addict, you will never understand the pain it causes. It is always with you like a thin layer of dermis you cannot shed. Always the worry in the far reaches of your mind.. I hope he is ok. It is a hard thing to describe - Grieving for someone who is not dead yet - but that is what it is like. The far off reaches of your reality always waiting for "The Call" to tell you that he is no longer with us.
I think the sadness created by the scab that was pulled from hearing from my brother, created a downward spiral effect into a few days of melancholy darkness and perhaps even a little pity party.
Like I said, once that door crept open a little - it allowed a lot to come through. I think I just needed to grieve.
I have had a pretty crummy year, and I think my mind - for whatever reason - decided to hit me in the face with an iron skillet and facing it all at the same time sucked.
I lost a friendship this year, and that wound still stings. I wept for my parents who had their own losses the last few years, I wept for my brother, I wept about our financial situation, I wept about my fear, I wept about my weight and body image, I wept abut my past, and I wept because I am sick...and this illness is NOT going anywhere.
I say pity party, not because I do not validate that I have a few heavy things going on right now, but I think I had a hissy fit and in a Marsha, Marsha, Marsha moment was pissed knowing that the Sclero will always be the cherry on top. I will always have life issues and stressors to deal with, but the Sclero is always going to be there making it all feel just a little bit more overwhelming.
For whatever reason, because I try to trust that everything happens for a reason, I was supposed to just feel this weekend. And BOY did I feel.
I am still struggling with a few things, or processing I should say. I have a family reunion vacation coming up in July and I must admit I am feeling nervous about my weight gain. I have two beautiful, very thin sisters.. so due to some issues in my past, I have body issues and it is one of my demons. I feel upset that I needed to be on steroids which, along with decrease in my energy and strength has caused my weight gain - so I am trying to just accept and love my NEW self. It is a lesson in letting go and a practice. Practice meaning, like Yoga - will never be mastered because there is always more to be learned.
I also realized I am nervous about some of the outings on that trip. We plan to go to Washington and what if I get too tired. What if I can't keep up? What if I have a flare? What if I have a swell up? - But again, I am learning that I have no control over what may be and I just need to live IN what the day may bring. I am a self professed control freak, so letting go and not being able to control is hard for me!! I also think part of me is afraid of it being public. This will be the first time with my sisters since I have gotten sick, so I have changed, but perhaps the expectations haven't? And I hate causing scenes (that kind anyway - I myself do like a funny scene) and I most certainly don't want to be the reason who don't or can't do anything. I hope that makes sense.
Anyway, L-O-N-G story short, that is what I have haven't written in a while.
I am human and I had dip into the deep blue sea..like we all do. And I am most certain I will have a few more dips and dives along the way. I am learning. Man are there SO many lessons to learn.
Well, That is all for now.
There'd be days like this my mama said....
Peace and Love ~