When you can’t look on the bright side, I will sit with you in the dark -Lewis Carroll

Jumping right in…..

MY WEEKLY UPDATE

This past week has been just awful, just when i think  things can not get worse, they do. This pain pump has become a living nightmare. I HATE it. I hate it so much some days I wish i could cut it out myself. I am still up screaming almost every other night and I am almost out of frequent flyer miles at the hospital. I can feel this dark cloud beginning to cover my entire body like a dark entity. It feels like all the “good” days are BEHIND me and only darkness is before me. I took this picture today…..you see the rainbow? The one BEHIND ME…..this explains how I feel in a picture….I am getting so far away from the blue skies and rainbows, it scares me.

****For all you optimistic folks out there….please do not judge, unless you are in my shoes, you have ZERO idea what this is like. Chronic pain, hair loss, severe fatigue, bone loss(teeth loss,) surgery after surgery, mouth sores, internal bleeding, vomiting, having to take poison meds…..YOU really HAVE no idea until you have to go through it. Oh and this new thing…it is called skin peeling off around my joints…it is really awesome…

And for those I have not told yet, my heart has now decided it wants to partake in the fun. Just in case you do not know….here is why this is a big deal..

“Most of us are aware that heart disease is the No. 1 killer of American men and women. What you may not know is that it is also a cause of premature death in more than 50 percent of people with RA.

According to New York rheumatologist Dr. Jon T. Giles, “RA patients have higher rates of heart attacks, strokes, sudden cardiac death and heart failure compared with otherwise similar people without RA.”-Maureen Donohue,

But hey, I am fighter right? I mean that is what people say to me all the time, so must be true..RIGHT?!

I always knew progression of this disease would happen but just like anything else, I always kept that in the back of my head. I mean who wants to think about their disease more than they already do?! Like my disease does not run my life as it is.

I did go to work ONE day so that was good, and I even did a little practicing for an up and coming qualification…

So that is what has been going on this week. I have a Dr appt this Friday with Dr “i just want to help you.”  Ya help me MY ass, more like I help you pay  for your fancy car and million dollar home.  Truth is he is just like everyone else, he HEAR’S me but does NOT LISTEN. I am just another guinea pig….just another paycheck…. Lets try this and this oh and this….maybe this……

 

THIS WEEK I WILL NOT BE ANSWERING QUESTIONS, ONLY BECAUSE I DO NOT FEEL WELL ENOUGH..BUT DO NOT WORRY, I WILL GET TO THEM EVENTUALLY. PLEASE REMEMBER I AM SICK TOO. THANKS

BITCH SECTION…..

The first thing I would like to Bitch about is this…..Please STOP saying to ME…..”I have a headache or a backache or WHATEVER and then say, But i do not want to complain, you know it is nothing like what you are going through.” This REALLY pisses ME OFF! NEVER DISCREDIT what you are going through!!!! Your pain, suffering, etc is REAL and it is IMPORTANT too!!! I understand why you say what you say but please STOP. There is no need to compare our health issues or our pain. Each of us have different experiences and feel things different. It is ALL important. So please do share with me. 😉

Secondly I want to talk about  family/friends. Now this is a touchy subject to some of you, so if you don’t want to read….skip this section! This is the time of year when I miss “family” the most.

Family to me is the people who you surround yourself with who love you UNCONDITIONALLY. This can be blood relatives or it can be friends who you call your family. As someone who is dealing with a chronic illness, I can kind of see why people have a hard time with being present. Now my disease does not excuse them for their ignorance but I have come to for lack of a better word, an understanding(a very little one.) People walking out of my life due to me being sick is one of the most hurtful things but it is a reality for many of us spoonies. And it is bullshit and hurtful but we CAN NOT change people, we can only educate.

With that said what the hell is the problem with the rest of YOU? Why do you let petty shit/arguments/disagreements WHATEVER, keep you a part from your “supposed” loved ones? Why are some people only important for what they can do for you? Why is hard to just contact people to say, HI?  Do you know how short life is? Do You need me to tell you? And if you know life is short then why do you continuously make others feel bad? You know the internet has made it so easy for all of us to see who people really are. We are a generation of sharing everything via online(where anyone can see)…some of us more than we should. So when you are telling someone you can’t do this or that and then you post your 5th and 6th vacation online for the world to see…it can sting, it can sting a lot. I guess my point is, just say the truth…here i will help you out with this one…..say, “hey i miss you but I would rather travel to blah blah blah.” “ya you mean the world to me but i would rather spend my time with so and so….”

And when you FINALLY tell the truth, I will make sure the person on the other end sends you this…

Because TRUTH is, you are a mean person not only do you say, “oh i miss you blah blah,” and then never make arrangements to visit, you then post all your travels to everywhere else online for others to see. Does it make you feel good pouring salt in wounds? ….oh and calling/texting when you need something or your are feeling bad…..is not cool either…..so if your call/text goes unanswered, you know why…..

Another thing That is along the same lines is this…..”Oh we would LOVE to be around for you guys during the Holidays but………………………?!”

Oh that’s OK don’t worry about us, we haven’t ever spent every gosh dang dime on traveling to family or friends for the holidays(enter sarcasm here.)

And if you are reading this and find yourself MAD….truth hurts….and maybe you think I am crazy right now………

Maybe you want to tell me to go to hell….

And hey, I wasn’t born into the greatest of family but the ones that Do give me love, I love back wholly. But even so, I am slowly dying an awful death and I for the life of me can not understand why some people, I BELIEVE should be here with me when able are NOT.

Nothing my children could say or do would keep me away. Because we are all human, we all make mistakes. No ONE is perfect. Sure we all fight and squabble but that  is what families do, but real families make it right…..and will show you in ACTIONS not in words….because words mean jack shit…i could tell you I am sorry all day…and not mean it…..but pay attention to my actions, they speak volumes!

This quote could not be more true! Maybe this is why some of my problems is due to the crappy people I allow on my path. You know the ones who say they are here but really aren’t, the ones who help out once and then disappear but love telling everyone they have helped…you know that ONE time. Or the ones dragging their feet, wasting my time trying to figure out what to do with me, or the ones who only contact me when they need something, or the ones who think it is OK to just “care” when they see me…..

FINAL THOUGHTS

I really think I am at a crossroad……with my health and with people in general. I see many changes in the upcoming year…..there are things I have to do whether others like it or not….because I am done spending what little energy I do have on what others want in life……I have wasted enough time on what others want… In case you didn’t notice…i have a voice too…..and it is time I use it in every aspect of my life……..

Sometimes I just want to visit the Mad Hatter….

But until I fall down the rabbit hole, I will just have to keep picking my ass up, keep fighting for my health, and keep advocating for myself and others. We are all masterpieces, no matter how broken. I expect you all to keep fighting, as long as MY ass still is…You should be TOO!! XOXO