Tag Archives: feeling alone

Reason for the Season

 

 

 

Question for you all…….Why does God heal some and not the rest of us? Does this thought ever cross your mind in some shape or form? Sometimes I get so frustrated when I feel like I am doing everything I can to fight my own body but always come up short. Then I read these amazing stories of people who have stage 4 cancer and then miraculously are “cured.” Now do not get me wrong, I am happy for them, very happy but I wonder what is wrong with me, that I am not cured or at the very least feeling like I am getting somewhere with my disease, like the chemo and biologics are doing their damn job.

When will my forever happy ending happen? When will I begin to enjoy life again, will I ever?

Lately I have felt consumed with questions like this. I am overwhelmed with everything that has to do with my health. I am so tired of it running my entire life. There is NOTHING my health hasn’t touched and I WANT my life back and I want it back NOW.

Just this past week I went with some friends to see the new Star Wars and half way through, my pain was so bad.  I was shaking like those old “magic finger vibration beds.” It was so frustrating! Can I NOT enjoy anything anymore?

 

I am so tired of trying to find my “happy” place when all I feel like is the tide has ripped me from the sand and pulled me under. I am really tired of all the sickness and destruction these autoimmune diseases have and IS causing.

 

I am also tired of being asked if I am ready for the holidays? What does this mean exactly? Is someone coming over for the holidays, that I didn’t know about? Is my chemo/biologic mix going to give me a day off because my next treatment date falls on  Christmas? Is somebody having us over for Christmas dinner? Am i going somewhere? Are you going to put up my tree and decorate for me because I have zero energy? Are the people I miss going to visit? Is a cure coming my way?

If you can’t answer any of the above, PLEASE STOP asking me if I am ready for the Holidays.  Not everyone has HOLIDAY plans….

While I am on the subject of Christmas, I would like to thank Staci and her family for the awesome Christmas card! You make our  door not look so naked this year. Love you guys

While I am bitching about the holidays, I want to shout out to those of you who are not ONLY dealing with their health but are also going through relationship bullshit. Last Monday I took some time to read some other health blogs and unfortunately I read the SAME old shit….People are hurting because some people can be mean. I am so tired of hearing about us “spoonies” having to watch/feel others leave us. Why can’t our health be the WORST thing we are going through? Is having our Own body kill us NOT enough?

I just want all of you that are going through relationship bullshit to hang on and try to not let it destroy you. I have been through it, so I know what it feels like. I know it hurts when someone that says they love you and they will stand by you and then when you need them the most…they walk out the door…like you meant nothing and You are left holding your heart in your hands. 

One particular women on this blog i was reading, wrote about how she doesn’t date anymore because once people see how she can barely walk and is in constant pain, they never ask her out again, so why bother? This comment made me cry because We DID not choose to be sick. Do we not deserve to be loved because of our health?

Spoonies, you are worth loving…NEVER forget that……

HEALTH UPDATE

My pain has been about the same(HORRIBLE)….i have one good day then 2-3 crap days. I am noticing though that the chemo meds are causing me severe pain about 6 hours after injection and the pain lasts for about 10 hours and does not give up. I try to talk to my doctor about it but she doesn’t seem concerned…… She says, “Its poison your putting into your body….what did you think it would feel like……?! ”  And she loves to just UP my chemo meds instead of trying other things….

Then I have my pain specialist who thinks everything he does for me is a damn miracle.  Let me tell you this pain pump was SUPPOSED to be the best thing for me but has been my biggest nightmare this year. It was supposed to work so well that I would not have to see him but every 3 months to refill the pump and I would no longer need any pain patches and or oral meds….HAHA what a joke, I now need monthly refills on my pain pump and he has me back on oral meds along with the pain pump…..

I just do not get it! I put a lot of  my faith into these doctors who promise the world and half the time fail me over and over again.  I am so tired of people failing me. I just wish people/Doctors would not just HEAR me but Listen to me.

I am still internally bleeding which is soooo MUCH fun as you can imagine. The skin on my face and hands is peeling and inflamed, making me feel so damn self conscious. I know my disease affects all organs and skin is an organ but I just wanted ONE DAMN ORGAN to not be affected….

I know I sound all negative Nancy right  now but it better that I write it down than keep it in my head. I hate when I talk to other “spoonies” and they tell me that they are afraid to share how they really feel in fear that people will see them differently.  This is what I have to say about that…

Are they the ones feeling your OWN body killing you? Do they feel your pain 24/7? Are they the ones spending more time with doctors than friends? Did their lives CHANGE completely?

Something else I can’t personally stand is when other people who have my  disease or a similar one, and they blog like I do but mask what they are really going through….I KNOW what this shit feels like, I know what the meds do to us, I know how it affects us physically and mentally….so please don’t be fake. Show your true self, others will appreciate you for it! Sure we can have “good” days if that is what you want to call them…but I can guarantee that our “good” days are NOTHING like the Good days we had before we were sick……

The truth will set you free and will clear your mind of some of the stress that can be toxic and affect your health even more.

FINAL THOUGHTS

For me I have to remember the reason for the season and it isn’t all the cruel people in the world who ignore us or treat us like we are beneath them because we are sick. It isn’t about shit families. It isn’t about feeling left out. It isn’t about the cards, you didn’t send. It isn’t about the sorry, you didn’t say.  It isn’t about what I wanted this year and didn’t get. It isn’t about all the things I was promised to finish this year. It isn’t about dreams that were crushed because of the people we chose in our lives. It isn’t about feeling so alone battling this disease. It isn’t about my anger when others seem to get what they want but my life stays the same. It isn’t about what some get in 6 months and I never get.  It isn’t about my frustration. It isn’t about this damn pain pump I HATE. It isn’t about all the disappointments.  It isn’t about people I miss who chose to keep me at an arms length. It isn’t about people who have taken parts of me, i will never get back. It isn’t about all the Dr appts i had this year. It isn’t about all the hospital stays i had this year. It isn’t about lost friends or new ones. It isn’t about all this horrible pain i feel everyday.  It isn’t about all I have lost to this damn disease. It isn’t about all the poisons i do every damn week. It isn’t about the sadness I feel in my heart. It isn’t about how I am so tired of fighting my own body. It isn’t about me knowing I am fighting a losing battle with my health. What it is about is…..Jesus. I could care less if you are religious or not…….To me…..The season is still about him….not US. I am a child of GOD…and tonight I am reminded to straighten my damn crown…..because when I am falling apart the most(which is NOW)…..he will always have me in his hands…He will also be holding you…………OXOX

 

 

 

 

 

 

My brain is always on

Lately i lay here and all i can do is think. Sometimes i wish my brain had an off button. I think various things throughout he day. I think why cant i just accept my health and all it entails? Why cant i be around people who actually love me and want to be with me? People want to run away from me once they hear how sick i am. Sure some people want to be by my side but with that comes other issues. I already go through so much that sometimes its harder to for me to go through others baggage on top of mine. Then i stress on how everyone will go on without me. My kids, i worry about them a lot.
I just feel so empty anymore & my brain dwells on that. I watch as others go about their business and occasionally pop in on me, like its on their “to do” list and once they have checked it off their list, off they go. Or my favorite one is .. Hey kari come by if you want… But we will never come to your house… Thats my favorite! People just don’t realize how hard it is most days for me to get out of bed &/ or do things. And that is why only a few people really know what is going on with me. Until i can trust you, you will only get basic updates. I really try my hardest to let people in only to get later left behind. I am the most loving loyal person i know, yet its hard for me to find real people to have in my life.
I think about love, and how much i love people and get very little in return BUT i also believe if i don’t fully love every time i might lose the very one i belong with. So i do my best even in my bad health condition. I pray that everything will work out eventually and that i will experience the most deep love with my soul mate before i leave this earth. Im special, i am beautiful, i am funny, i am loyal when i am committed, i am smart… I am a great person and anyone is lucky to know me. We all have good and bad qualities.. My health does NOT define me!!
I get tons of emails on what i think about when i am alone. So here is a brief intro to my brain. Lol