Tag Archives: ulcerative

December

Happy December?!

I hope everyone had a great Thanksgiving. My life has been hectic but I thought I would update everyone on what is going on and take a few minutes to answer some emails from last month.

 

UPDATE

My health is just escalating out of control. I just started an even higher dose of chemo and biologic mix and it is kicking my butt. I am not eating much and I spend a lot of my time now puking my guts up. I hate when you puke so much that you can’t breathe. My puke is also now a bright beautiful color of neon yellow. ******TMI picture below, if you do not want to see it, scroll RIGHT NOW past it****

 

I am not trying to gross anyone out but many of my readers are sick just like me and sometimes showing stuff like this ABOVE is helpful to others who may be experiencing the same shit.

I am also internal bleeding more than I was 2 months ago which really sucks and is very painful. My liver and heart have also gotten on board with being an ass. I always knew this crap would progress but NEVER in a million years did I think it would so fast. I feel so out of control, like the disease is NOW driving my body and I have no say on where we are going.

 

OK lets get to these questions, I have promised to answer…..

1. How can I better manage my frustration? To be honest this is a hard question to answer but I will tell you what I do and maybe it will offer you some comfort. When my health symptoms start to take over and I begin to feel out of control, I write and then I try to get out of the house….anywhere is better than sitting at home waiting to die. Pain can really affect your thinking so for me writing is a great way to get the negative out of my head…is it perfect and does it always work?….No but it is a good start….I hope this helps….Just do not give up.

2. Why do I feel like a stranger to everyone including myself?  Personally, I feel like a stranger because when I look in the mirror, I no longer see what I saw 6 years ago. 6 years ago, I was working on my bachelors in Criminal Justice, I thought we had figured out most of my health shit, I felt like my life maybe was getting back to something “kind of good.” And then with one damn fall and a Dr who refused to let me leave his office without knowing the real reason behind my legs giving out….I was diagnosed with something that would forever change my life. When the hammer(our health) falls on us it just doesn’t hit a part of us, it shatters and affects every part of our life. In my opinion we change not because we want to but because pain and chronic illness changes people.

I hate needles and now I have to do chemo and biologic meds every damn week which require needles, so I HAD to get used to them. I had to change. I used to worry about dumb shit and now I HAVE to let a lot of things roll off my shoulders because I HAVE NO TIME FOR BULLSHIT. Life is short and I spent most of my days suffering enough.  What do you see when you look in the mirror? Do you see the old you or the CHANGED you?

As far as people seeing you as a stranger I believe as I have said before, people retract when someone they care about is sick. They have no idea what to do so they  push you away because it is easier than holding your hand through it.  I find that most people just want to watch me from a far. They want to know I am still fighting however do want to be a part of the “fighting”path. It is just too much for some. When you get sick, unfortunately you find out who is really there for you and who is not.  My best advice..be a Morticia in a world of Barbies!

 

 

3. How do I get through the Holidays? I can’t eat much and I find myself just feeling alone while others are out and about enjoying life. This is a GREAT question. Holidays can be hard, I know this to be true! I think you need to not put so much stress on yourself, you are battling enough. Do some little things, have  a hot cocoa with a friend, write a letter to a friend or family member, buy yourself something (splurge a little,) maybe visit an animal shelter or stop by and spend sometime at the local senior center. I find it best if you distract yourself a little from how you are feeling at that very moment. 

As far as eating, when I go out, order something small like a potato or a small sandwich that I know will be OK. However if you can’t eat try a shake or something fun to drink like a citrus vodka 🙂 Just explain to who your with that you can’t eat much due to your health but for them to please enjoy their meal.  They should understand, if not….Fuck em

Remember we do not have to be like everyone else….it is like the saying….

Just make memories…in the end, it is all any of us will have…

 

Normally i separate my “Bitch section and my final thoughts” however this week, they are the same….

If I am to be honest, this picture above is EXACTLY how I have been feeling lately. It is taking everything I have to keep going. I am so tired of chemo, biologics, pain meds, antibiotics, steroids etc! I miss food, hell I miss keeping food down! I miss having a life..meaning I miss working more, I miss training more, I miss school, I miss making plans, I miss going on trips, I fucking miss it all. I am DONE with screaming all night because I am in so much pain and so frustrated that this permanent pain pump was SUPPOSED to be the greatest thing for me as far as pain control! I fucking hate it! I hate it all. I am tired of trying to be strong around others, faking smiles, pretending  to be the warrior many of you think I am.  I think people sometimes forget that because I write on this website/advocate for my health or they see me training and or working at the gun range, that I am not struggling everyday to live.  Truth is on those days, Sometimes i just push myself, I  choose to get up and put one foot in front of the other(no matter how much pain I am dealing with) which some days means writing on here, other days working at the range, other days training. But do not think for one second that I am not screaming inside and praying for it all to end. This life chose me, I didn’t choose it.

I know it is hard for some people who only see me when I happen to be out and about or working to understand what i go through because I am good at hiding it. I think many of us “spoonies” are very good at hiding pain and sickness because we have too. “Hiding” symptoms is something we all have to do at one point or another, if we are to lead any kind of “normal” life.

However, I am getting sicker and it is getting harder and harder to Hide. So i thought it would be good to get some video/audio examples to share. To do this,  I have been leaving my iPad on while at home so that I am able to share more of my life in hopes that people will see more than with their eyes.   This audio clip was taken the other night, this went on for about 4 hours(although lucky for you, this is just a minute and a half of it) and it is a good taste of what my life is really like….

When I first started listening to the clips, i was shocked to hear myself scream so much for someone to help me because I am almost always the only one up. I hope this small clip gives you just an idea of what I go through and if not, maybe next time you can go to the hospital with me? The hospital is always a good time with me.

I am so tired of watching time pass me by. I am tired of doctors and hospitals. I am just so tired. Tired of asking for help. Tired of trying the latest and greatest thing in hopes it will help me in some way. I am tired of trying to get others to truly care. Tired of people telling me I am a warrior and I must continue this fight(like they know what it takes to “fight” this shit.) Tired Tired Tired!

I honestly feel like I am knocking on Heavens door but God doesn’t want me just yet and this frustrates me to no end. Does he not realize how tired I am. Does he not see the pain I am in? Why does my suffering never seem to end?  My disease is continuously ripping me apart and I can’t do a damn thing about it…..I just want it to end.

I am so tired…

I fucking hope this saying above is true!

It gets real OLD fighting everyday and I hate when others judge me because I want to quit and give up. It is you who judge me that do not walk in  my shoes,nor do you help take care of me while i scream myself to sleep, puke my guts out, internally bleed everyday, put poison meds in my body, take me to the hospital and to all my never ending Dr appts.  It is not YOU who holds my hand when more bad news comes my way….

So don’t judge me…Don’t judge any of us, Trust me when i say, we judge ourselves enough!

May it keep picking my head up when all I want to do is lay it down. May it keep me thinking of reasons to not give up. May I continue to have the attitude of gratitude when I am able too…. Until next time spoonies and readers……OXOXO