I hope you all are enjoying the beginning of summer!
I plan on answering more emails next week as this week has been a bad week, my body decided to be a pill. I missed almost an entire week of work and I spent some time in the hospital. It was just one of those weeks when you want to “tap out.” I was completely miserable. the dizziness, the vomiting and the all over feeling like shit does get old…..
BUT….. today I was able to get back to work! It felt so good to be out of bed and be around my work family.
I do not feel as good as I felt 2 weeks ago but I definitely feel better than the past week. My blood tests are not good and my inflammation has been high and I know that is why my body hurts so much but dammit, I really can not take anymore weeks like last week. It truly takes all I have to stay optimistic when my body keeps being an ass.
The Doctors try and help with the pain control but sometimes nothing seems to help. I just have to push through it and pray for it to end. It is so frustrating, scary and really getting OLD. I want a break, a break from it all. My inflammation numbers are very high and have been for awhile now which angers me. It angers me because the Chemo and Biologics I am taking are supposed to be helping with that and it is not. I feel like I am suffering extra due to medication side affects for NO reason. The Doctors are meeting in the next few weeks to discuss what is next for me and I am praying that it is something better than what I am currently going through. Truth is all the ideas they have already discussed with me are no better than what I am doing now, essentially new drug name with same fucked up side affects. I really am trying to be optimistic but I feel so burned out. Until they find a cure, I feel I am in a never ending battle that I am never going to win.
Nevertheless……..Now more than ever I do want to live, because FINALLY outside of my health things are GOOD. I want to see where this new path is leading. I have been enjoying hanging with friends. Going to our favorite Bar with the group…
having BBQ’s with the Walkers…
But Most importantly I have been enjoying my time with the Best Boyfriend a girl could have.
Ryan thank you for showing me that broken pieces can go back together. Your love and support have been such a blessing to me. What is so great about you is that you never had to say the words, “i love you,” because you have always showed me that you cared. It is so good to have someone just do things without having me to ask. The way you comfort me when my health is kicking my butt has been a nice change. I love that I can count on you to be supportive, I know you have my back. I love you for all the above reasons and so much more…………….
To my spoonie family, keep fighting, keep putting one foot in front of the other and NEVER give UP!!! I do not know about all of you but being sick and shown me how STRONG i can be and that I can get through whatever life throws at me!
As always thanks for all the love and support XOXO
This picture above explains how I have been feeling since the beginning of 2018. I feel like the New Year just slammed into me with ZERO warning. Last night I felt overwhelmed with everything….
My health just seems to be getting worse and I feel NO ONE is doing shit about it. Dr’s do not want to change the meds, all they want to do is up them. I see my pain pump Doctor in 2 weeks and I am praying that we can get through to him that this just is not working for me. I am so tired of the pain….it keeps me up at night, it keeps me in bed during the day, it likes to be in the hospital, it loves to torture me and I am SO OVER IT. My hair is still falling out, the skin on my face is peeling off and i just miss feeling beautiful.
I know that looks are not what makes someone “beautiful,” however we live in a society where being “beautiful” is pushed on women 24/7. We are told to be thinner, have long hair, wear gobs of makeup etc. I have never been the type of woman who listened to what “others” thought I should look like however I miss looking how I want. I miss being able to go to the gym or go dancing to stay in shape, I miss having what hair style I WANT, I miss being able to wear very little makeup and feeling like 100 bucks. I miss ME. Somewhere along this health journey I lost me, I had to change myself due to the side effects of my disease and or medications.
UPDATE……This post has taken longer than I previously thought due to these shit meds! Last Wednesday the Dr thought it would be a good idea to add another dose to the chemo and it took me out for 3 days. I spent many hours in the bathroom and in bed, that stuff makes me so sick and when they add to it, they make it worse. This completely sucks!
I am so tired of puking and feeling that dizzy shitty feeling. This higher dose of chemo meds had better do something amazing because the suffering is bullshit! If this is what is to come every gosh dang week, then I quit!
These diseases of mine have been kicking my ass but the meds I swear can be 100% worse. It really takes everything I have to keep going and if this is really how my weeks are going to be now…..I do not know if I can keep going like this….
I have also been going through some emotional shit outside my health. Lately a few people I thought I could count on ended up being like most other people who run the other way. I hate that those of us with Chronic/terminal illness have to get used to people coming and going. Outside of all the physical pain of my diseases, I hate this part the most. I hate trusting people, I hate giving people chances only to watch them turn their backs.
So with all that SAID, I am going to do a few things FOR ME…
I am cutting ALL ties with people who do nothing but drag me down. Chemo/biologic mix will be the ONLY toxic shit in my life.
I am going to search the COUNTRY for better Doctors. I do not know if they exist BUT if they do, I will find them!
I am going to love me FIRST always. I recently realized i support others when I get very little back. I refuse to be put on hold while I wait on others. What I mean by this is when I feel unloved, I will go be around people who love me, when I feel alone and scared of what my future holds, I will be around people who really do care and have a shoulder I can cry on. My Time IS valuable!
I will look for happiness within Me, not outside of me. I am going to try(body allowing) to do one thing for ME every week. I definitely lost myself in this health crap. I need to find a way to keep picking myself up even when all I want to do sometimes is die.
5. Wear MORE lipstick…I AM a girl after all
I think for tonight that is all I got. Like I said the last 3 days have been rough, i have kept zero food down, until this morning, the last time I got UP and OUT of the house was today. And unfortunately for me(higher dose #2) chemo/biologic mix is AGAIN tomorrow….So if you pray, say one for me please!! This has been a long 5 years with this diagnosis and although I am grateful to that ONE doctor who FINALLY found out what was wrong with me, my life has been forever changed. Side effects of these diseases will kill me and it will be before my time. I am OK with that now but it is this slow suffering that I will never be OK with. It is ME time now…so until next week……XOXO Keep up the fight spoonies
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.
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
This is a hard one for me to answer. It is honestly an emotional question. Physically it makes me feel like i have been torn apart, put in a wood chipper, rebuilt and then continuously put on repeat.
Emotionally it is depressing and frustrating because there is nothing anyone can do not even myself. I feel isolated and hurt by those who claim they love me. I watch as people just go about their buisness and pretend i am even in the room. Its lonely, scary, down right scary!
I feel pain all over and when i say all over i mean all over. I internally bleed which makes my belly and kidneys hurt. My spine has some issues so my back just screams. My legs refuse to work like they should so sometimes every step feels like someone is ripping them off. My hands swell and fight me on everything i used to be able to do. Most days i have trouble gripping things. Both my ankles and wrists ache continuously. I have sores on my feet and in my mouth sometimes. I habe skin rashes that itch like bug bites.
AND there is the fatigue!!!! I could sleep for two days straight and get up exhausted, so exhausted one would think i haven’t slept in weeks. It amazes me just how tired i am. Then som noghts its insomnia night(my favorite) its the night i get to see how many shows i can watch while others are fast asleep.
I am sure i am missing somethings because there are so many to name but i think you kind of know how i “feel”.
Oops almost forgot to mention how many meds i take, these also make me feel certain ways, but mostly i just feel like a medicine cabinet. Many drugs make me feel dizzy, agitated,sweaty, barfy, Not hungry and just plain ‘ol SICK!