Sorry it has been a month since I have written but my body is being a complete asshole and that is saying it nicely.
I want to share some of the bullshit I have been going through so you all at least know what is going on.
As if it wasn’t enough going through what my body has been going through, i also get to deal with people saying one thing and doing another. Here is some advice, take it or leave it…… DON’T OPEN YOUR MOUTH UNLESS YOU PLAN ON DOING WHAT YOU SAY! I am DONE with words that mean absolutely NOTHING. I have zero TIME to wait on empty promises.
There are only 24 hours in a DAY, use your time wisely. I spent 19 years in a relationship where my cats where more attentive and will be dammed if I ever allow anyone to treat me that way again. This is for EVERYONE. I will NEVER go backwards, a valuable lesson I have learned is that their is always someone waiting to spend time with you, so don’t waste it on people who do not deserve you.
Lately I have spent more time in bed than anything and it has been a reminder that my life is short and what time I have out of bed will be spent with people who actually want to be in it. PERIOD
I appreciate all the emails, calls and texts I have received during this rough patch! I am sorry if i haven’t gotten back as quickly as I would have liked but I choose not to spend all my time on electronics. I hope you all understand.
Some of you have asked about my last blood tests, I purposely have been avoiding them and this is why…. My last tests confirmed that I have the worst version of my disease, I am 100% seropositve. I do not want to go into details but if you are curious, look it up. It sucks, i have been so afraid to see this word ANYWHERE in my chart. But hey at least I finally know why my health has been deteriorating so quickly. It confirms why my pain is off the charts and why nothing seems to be helping. So that’s the shitty news…..
So as you can imagine my moods have been like this….
This past month has been the hardest in a long time, I have prayed to die, prayed for help and prayed people pull their head out of their asses….because LIFE is happening RIGHT now and it hasn’t been a bowl of fucking cherries. I am so frustrated, I feel alone, I feel doctors are fucking idiots, I feel like i am wasting away and see no end in sight. I fucking hate RA, EDS and all the other little fuckers that are killing me!
I hope to write more next week until then keep the prayers, positive vibes coming my way, i need them more now than ever. XOXO
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
I have been getting a lot of emails in regards to how I am doing in my health and personal life, so here is an update….
I have kind of been all over the place emotionally. Even though I feel blessed for how my current Personal life is, It has been hard to just turn off all the feelings of the past. For some, it is easy to move on but I also know that when you do not deal with your past it ALWAYS comes back to get ya….eventually. So for me, I try to deal with the past a little at a time that way it doesn’t bite me in the ass later.
It has been 3 months now since my life was turned upside down and I still find myself to be a little vulnerable to certain things. It can be simple things that remind me of something and then sometimes it can be something huge. But no matter what the something is, I always find my way to keep positive and continue on my new journey.
A few of the emails and messages I have received have asked how I feel now emotionally compared to when it first happened. I would like to take a moment and answer….
This above quote says it all! I think most of you would agree that when you choose to spend your life, your time with someone that even when things go bad, you can both have the decency to be respectful to one another. But throughout this whole mess, I have been BLOWN away at how i have been treated. I guess in the end 19 years did NOT earn me the respect I feel I deserve, instead I was slapped in the face over and over again. I was told it would all be amicable and that their would not be any hard feelings. I could keep my car that I had been paying on for 4 years, i could get all my belongings…etc But in the end all I got was lies and more lies.
I was hurt physically, I was cheated on but nothing hurt worse than the way he lied to me. Of all the people in my life, I never once thought that he would be the one to be behind the trigger. Betrayal can be so painful.
But with all that said, today I stand tall. I have forgiven him, pushed him off my path and have continued on. I know there will still be a few moments when he crosses my mind but now I am confident on how I will deal with those moments. I have grown so much in these past few months and I love getting back to feeling like ME again. To sum it up, He was a blanket I carried around for 19 years, and due to his behavior and his issues the blanket(him) became old and ragged.
I do not need a blanket anymore. I GOT this SHIT!
Sometimes you have to go through the rough times to see the beauty that is in your life.
For once in my life my health is the WORST thing in my life.
My cell death is really high and I am on the highest dose of chemo/biologic mix. I have several Dr appts this month and I am praying that my specialist has an idea on what to do next, Because the current regiment is NOT working. I want to see what tomorrow brings! I want to live! I want to enjoy whatever time I have left.
I hope this answered most of everyone’s questions. I will update when I can. As always,Thanks for all the support and love!
Tonight I am going to try to get some of the emails I receive answered. I will also give a health update.
It has been 9 weeks since my life took another twist and I was once again thrown onto a new path but so far I have been able to keep one foot in front of another. I think it is important to share my story in hopes that it continues to push me forward and help others who may be going down the same path as I find myself on now.
Lets get straight to the emails and then I will share what has been going on with me and what is next for me.
1. I have been following you since the beginning and I am always amazed on how you stay positive, how do you make it look so easy?
First off thanks for following, I love to hear from you all! To answer you question it is NOT easy to stay positive through any of this thing called life. To be honest none of this has been easy. For me I have had to force myself to keep going and to not look back. And when I find myself starting to look back, I quickly remind myself to keep looking forward because there is NOTHING behind me worth turning around for. As far as my health I have do the same thing…always look forward because stopping and feeling sorry for myself or stressed out about my health gets me nowhere but wasting valuable time. Thank you for telling me I make it look easy but it could not be farther from the truth. my advice to you is just keep your EYE on the PRIZE in FRONT of you as much as you can. Never give up on Yourself EVER. This life is for YOU, no one will make you happy but yourself.
2. How are you taking care of your health and emotional state now that you are on your own?
This is a great question. At first it was super hard to ask for help. I am an A personality and it took all I had to ask others for help. But now that I have, everything has come together as good as it can be. I have learned how much compassion others around me have especially the people I work with. I feel extremely lucky to work with the folks I do. Many people have stepped up and offered help with Dr appt visits, hospital visits and so much more. On a personal level, I have also learned to lean on my faith more than I ever have. I pray to God every night and thank him for the blessings I have and the ones I know are to come. Since I am on the topic of God, I just want to throw this out there….( a couple of my friends although supportive of what I am going through have mentioned more than a few times that I should be mad at God for allowing me to be continuously sick and then allow people like Brian to treat me like he did. Everyone has a right to an opinion and here is mine in regards to the above…….I am not mad at God, he isn’t the one making me sick or treating me horribly, He is however the one who made sure I had good people in my life that were able to DROP whatever they had going on in their lives to help me with all that I have needed. I am not going hungry, I have a roof over my head, I have transportation and my life is so full of laughter and joy right now….who else could have made that happen in such a short period of time?!)
So to sum up an answer to your question, I pray, I put one foot in front of another everyday, I keep up with all my medical crap and I PUSH my self to find something positive each and every day. Sure some days are harder than others But I never give up!
3. Have you been able to look back on the last year yet and see your life in a different light? Do you think you settled with the life you had because of your health?
YES YES and YES!!! It is funny that you ask this question because the other day I had to go back and find some “info” that I needed for a project that I am currently working on and I was able to see through clear eyes the life I had settled for.
I think many of us who are battling our bodies everyday find our selves settling for one thing or another. In my case I found myself feeling “comfortable” with crying myself to sleep every night, I had accepted that even though someone was lying next to me every night, I WAS alone. I settled for relying on others to take me to monthly Dr appts, to the hospital and worse than those two put together….I settled doing chemo and biologic”s on my own. I had convinced myself that in order to keep the peace at home, I had to only be “sick” when it was just ME, when he was around I had to fake be healthy or at the very least feeling good. I HAD to become 2 people and in the process I lost who I WAS. If you are finding yourself in a similar situation, take a good look at yourself in the mirror and if you do not recognize your reflection, you really need to make some changes.
4. Hi, I am currently going through a divorce right now and I feel so alone and lost. Will this feeling ever go away? Is there hope for us that already have so many issues in life like bad health? In your opinion do we really have a future? Will anyone ever love us, all of us, including our health?
I actually received several emails asking the same thing. I will try my best to explain how i feel on the subject and hope you all can take what you need from it.
First off my heart goes out to any of you going through breakups/divorces etc. I truly feel your emotional pain. In my opinion I think people throw in the towel so quickly anymore. We all stand before God and make these vows to always be there for each other NO MATTER what and then find out the vows were empty promises. And then when you are dating, people will love all what you bring to the table, but then later turn there back on you for the very things that they fell in love with the first place.
It is like people are always looking for the next big thing. Or for greener grass..when the grass will ALWAYS be greener where YOU WATER IT!!!!! With all that said, you can’t take anything personal, because what others do and say is THERE MESS NOT YOURS and you have to find a way to remember this.
Feeling alone is completely normal, they say that any relationship that ends is like a death and you will find yourself going through all the emotions of mourning. I think that being alone with yourself can be very beneficial. It is those who jump relationship to relationship , within days are those who will have issue after issue because if you do not give yourself time to “mourn” over the last relationship it will sneak up on you at some point and when it does…..it will affect the new relationship you have taken on…i GUARANTEE IT.
As far as a future, I believe each and every one of us has one. We just have to keep going and always put one foot in front of the other. Do not spend your time waiting for the “right” person to come along, I believe that the “right” person will come along when we least expect it. So spend your time doing stuff for you, make your self happy and when you do the “right” person will come along. So take care of YOU. I know there are people out there that WILL love us, all of us, I have seen it. So do not give up.
MY HEALTH NEWS
For the most part I have been feeling ok. I have even been able to get out and do a few things which is GREAT!!!
Of course i am still having the usual pain but nothing I haven’t been able to handle(most days). However I had to do my blood tests this week and so far 2 have come back bad. my cell death has more than tripled, it went from 32- 122. So last night I had to do the highest chemo/bio mix I have ever done and it kicked my ass. I woke up several times during the night screaming out in pain and it is nights like this that I wish God would just take me. Not only did I wake up today with a lot of hair on my pillow, I felt like a truck hit me. I have been dizzy and running hot all day. I hate how these meds kill both the bad and the good cells. This is no way to live life.
My next Dr appt I am going to beg that we change the meds. I can NOT keep doing this. I am miserable and it is not working anyways, the blood tests prove that. We are still waiting on 2 other blood tests but at this point I am sure they are bad. But with that said, I am just going to pull up my big girl pants and keep FIGHTING, I have no other choice! This IS the road I am now on and I must keep walking down it. Warriors DO NOT QUIT.
Thank you to those of you who are always my support system, you all keep me on my toes and remind me of why I continue to fight!!!
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
If you are reading this….guess what you made it another year too!
Ya ya, I know I am late posting my final 2017 post..it sucks being sick, sometimes you just do not get shit done……anyways………I hope you are proud of what all you have survived and done this past year……If I had to pick the hardest year to date since diagnosis, last year definitely was it……
My year started off OK. I had just started a higher dose of chemo but my pain patches and oral meds seemed to be working enough for me to be able to do a few things and make it to work. Then March came around and I went in for my 21st surgery(my pain pump) and the whole world as I knew it changed.
This was supposed to be the “best” thing for pain control in regards to a disease that causes 24/7 pain but it has turned into my nightmare. My disease has caused a lot of problems and stopped most of my dreams in their tracks. This pain pump has destroyed everything else. I went from the disease kicking my ass 3-4 days to not being able to move much for weeks on end. It took 7 months for the pain pump Dr to listen to me and remove one of the drugs from the pump that i KNEW was causing me tons of issues. Day one after the surgery everything tasted and smelled like metal and I gained 26 pounds within a few months. I still have the pain pump, see my Dr every 4 weeks for refills, I am back on oral pain meds as well, my spine hurts all the time where the pump is implanted and it is only costing 1300 a month….I hate this thing! PLEASE if you are considering a pain pump, look into it before doing it…..I know it helps some people but NOT everyone!!!!!!!!!!
The whole pain pump nightmare has made me even more miserable than before…if you can imagine that……HOWEVER several other things happened in 2017……
Our Gun range family got bigger, we gained…. Dan, Dimitri, Don, Ashley, Drew, Alisha and Nick
I absolutely love the RGR crew, they may not know but sometimes on my worst days, they truly give me life, they remind me to keep going and not to give up. Thanks guys
I truly believe God brings people onto your path for a reason..some people are meant to stay on it, some are meant to come and go and some stay for awhile and then go on to the next thing. I feel blessed for those few who have stayed on my path and helped me in one way or another.
Thank YOU Jaime for just listening, sometimes that is all I needed….and please .know that your fucking bitmojis always gave me something to smile or laugh about…..I wish you only the best in 2018!
And thank goodness my Marine Ryan is back…woohoo!! We have way to much fun together……….Laughter is good medicine!!
Sabrina, words can NOT express what you mean to me…God definitely brought us on each others path. I know it sucks but just knowing someone is going through the same shit as I am somehow makes it more bearable. God Bless you and your friendship.
Making memories are the only thing in life we take with us….SO make them!!
I spent roughly 32 days this year in the hospital…super thankful to my awesome nurses, Roco and Sabrina. I spend a lot of time with nurses and most have been complete asses so I am BLESSED when i get to see Roco and Sabrina. Roco even when not my nurse will still come in and make sure I am taken care of…he is a Godsend! Sabrina will go to bat for me if she thinks the Dr is not doing their job….amazing nurses those two <3
Even though I was busy spending time in the hospital and in bed, i was able to work a few days or more……..and since the meds made my hair fall out… I decided to have a lot of fun with hair colors.
My health wasn’t the only thing that caused me great sadness this year… I lost my oldest partner in crime…..Jigs
This really broke my heart because last year we lost his brother Haussen….They were the only ones who loved me unconditionally and never left my side.
These were MY boys..and they will be missed and I pray to see them again someday.
I had a few happy days this year as well. I saw my friend and favorite singer/songwriter Tyrone Wells. Tyrone Wells has been such a blessing in my life…I hope he knows just how special he is and how much his music inspires me to never give up on hope. Thank you for coming into my life 8 years ago!
Your music inspired my latest tattoo….even though my body is killing me…I try to remember this life is beautiful…..
FINAL 2017 THOUGHTS…
2017, I hope eventually becomes a distant memory because it absolutely sucked. I went through more trials than I ever thought I could and even though I came through on the other side I am TIRED. I am Tired of fighting with my body. I pray to God every night to either take me or keep giving the strength to push through because this life although it has its beautiful moments is FUCKING HARD. Nothing I have ever gone through has been as hard as fighting my own body that wants to kill me….not hurt me but kill me. I have never ever felt so depressed or wanted to die more than I have in 2017. Chronic illness and Chronic pain is so consuming and it demands to be felt in a way I wish on NO ONE.
I pray that 2018 brings people in my life who are not afraid to stick around even if that means watching me screaming, being poked/tortured by awful poison meds and praying to die. I pray people have more compassion towards others, truth is everyone is battling something. I hope that new Doctors come on board with new ideas on how we can fight my mean ass body. I pray God continues to hold my hand on days I no longer want to live. I hope those around me watching start taking nothing for granted….
I do not believe in New Years Resolutions because lets be honest, no one really follows through with what they say, however I am going to hold myself accountable with this quote:
And I am going to remember to do this daily:
So here is to 2018…I pray you all continue to fight, even if it is only for another second. You are not alone WARRIORS….XOXO
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……
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.
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
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
I know 3 weeks ago, I promised to go more in depth in regards to chronic illness and relationships, however my health has unfortunately taken a turn for the worse. These past 2 weeks I have been in the hospital, so my post on relationships has been pushed back but I promise to get it done by the end of the month.
Due to the overwhelming messages I decided to write a little post about what is going on with me. My cell death and inflammation around my organs is at an all time high right now. It appears that the chemo and biologics are doing absolutely nothing except making me miserable. Which in turn makes my pain go from a 6 to 1 million. No SHIT. The pain is so unbearable that I find myself praying God just takes me. With that said I have been in the hospital a LOT.
Thanks Brian for being my Javier to my Letty 🙂 Nothing is ever perfect but it always seems to work itself out……
I would like to shout out to Alisha who has become a really valuable player in my health crap. I am so grateful to her for taking time to help me. Although I think next time Alisha, You will be required to pick me up on the scooter…I mean it just makes more sense than riding in your truck….HA! * I promise not to pee*
I also would like to thank the BEST NURSE ever, Rocco. Rocco is an amazing example of what a nurse should be like. I spend at least 70% of my life in hospitals and he is the only one that I have ever met who has so much compassion for his patients. He always goes over and beyond.
He will rub my hair until I feel safe, he will do whatever it takes to make me comfortable. I am NOT a number, to him I am a person. When you are sick like I am, being a person to those taking care of you, is one of the most important things. So many treat us like numbers or like paychecks. God definitely put him on my path for a reason. I really love this man, he has been taking care of me for over 8 years. I pray all of you battling your illness/disease have at least one person like Rocco on your team, it does make all the difference. If I ever win a million dollars, I would send him and his family on a dream vacation. 😉 No one is more deserving.
I also wanted to touch a little on the dark side of dealing with your body killing you. I know last month I touched a little bit on the Suicide subject because it unfortunately is a huge part of the chronic/terminal community but these past weeks have been the worst for myself. I think it is important that we be able to express how we feel and not have any repercussions. Like I said last month, your thoughts are normal, this life IS hard. The pain, the Dr’s, the hospitals, the lack of support, frustration etc it is REAL. I hope that all of you going through it, keep pushing through it. I have my days when I am just DONE, but I pray that God brings me/all of us through it. Lately life has been really hard on me because I feel that everything is now beginning to slip through my fingers. Everything that the disease to this point has not affected is now affected. I feel so empty and so vulnerable. I often wonder what the point of my life is?! Some days I can answer this question and some days I just feel so clueless.
Last week I had an appt with one of my specialists who I know hears me but really does NOT listen. It took all I had but I told him that I AM DONE, I will NOT live like this anymore, so he needs to help me figure this out. I am still unsure if he was completely listening or not but I see him again this Wednesday to change some of my meds that go directly into my spine via my pump. Only time will tell if this will help, if it does not then this….. was for NOTHING.
I told my Dr……
I also see my disease specialist this Thursday because this chemo/biologic mix IS NOT working and we need to look at more aggressive(like the shit i already take isn’t ) treatment options.My disease at this point is winning. My cells are taking over and attacking all my organs, If it continues at this rate, I will not survive much longer. I try not to think this way but it I see my body deteriorating. The internal bleeding is insane, I would show you pics but do not want to freak you all out. The weakness that has always been apart of my disease is extremely overwhelming now, I barely make it up to go to the bathroom anymore. I am lucky if I make it work 1 day now. As I said above, I see all these changes coming on…..as much as i want to keep fighting….I am tired. I still believe this is ME….
but my body quickly reminds me..
I am no longer afraid to die, I believe wholeheartedly that I have fought as much as I possibly could. So if my time is coming, I am ready, I am tired, this life has been full of battles, battles I am proud to say I fight standing up. I am living proof that you can keep going no matter what. In 2001 my specialist said I had 7 years to live, here it is 2017. I have already beat the odds and I will continue to fight until the very end.
I still have a few things to finish, I have this book deal that I want to finish and I just became part of another project that I am super excited about. Not to mention I love being at work…..I mean who wouldn’t want to work around this shit?! And I really miss training……#america #pewpewpew
So until God takes me I am going to continue to fight and try to enjoy what good things life does bring my way…..I pray you all do the same….XOXO
This week has been awful, so bad that I do not want to go over it all. It was full of excruciating pain and a bunch of bullshit from the Dr’s. I spent time in the hospital, a few hours at work and the rest was spent in bed.
I have NOTHING positive to say about autoimmune disease this week! However I was glad to make it to work tonight! It feels so good to be out of bed and be around others.
AND I AM SUPER EXCITED BECAUSE TOMORROW I GET TO SEE MY FRIEND TYRONE WELLS! If you have never heard of him, please look him up! He is an amazing singer/songwriter!!!
So please pray/send positive thoughts that I am able to go and see him perform.
Due to the lack of energy I have I will answer all questions in next weeks post…thank you for your understanding. If you have a question, you can either DM @openkari or email me.
Bitch Session and Final Thoughts….
I get so many messages in regards to trying to keep positive when your whole world is crumbling,so many chronic illness suicides lately… so lets talk about this for a minute…
First off take a breath! If you read my posts, you know that my thoughts, pain, frustration, life etc are very similar if not the same as yours. It is OK what you think, what you feel etc. You are not alone. You might look around and see no one but we are here….I get it, you want it all to STOP. Ya me too! Some days it takes all I have to make it second to second. I pray, I beg God to help me through the day, to get a break, cause I need one so desperately. The constant pain is so over powering and it never seems to end. I don’t sleep much, i don’t eat a lot, I don’t get out much, life just seems so dim. I feel like I am being held under the water, never coming up for air.
The other day i was looking through some art work and I found this amazing photo that I think speaks for itself. Some will only see the negative in this picture, but to me i see truth, i see pain, i see hope….
Just because we might think something does NOT mean we will act on it and that is what I see in this photo. Life is a constant battle, unfortunately for us, we are battling our own bodies. This life IS fucking hard! We must always be shattering the negative that slips in our mind. Truth is….. Suicide is real, depression is real especially with chronic illness. I know that the chronic illness is NOT the only ones who have depression or who commit suicide but for the purpose of this post, chronic illness folks are the group, I am talking about. We must never give up. We all have a purpose even when we have NO idea what it is. Fighting chronic illness can be a very lonely battle because no one can see the battle but us. I find this to be hard because trying to explain to others how I feel when to them I look OK, sucks! Some people just can’t comprehend that our cells are killing us. I get it, what you can’t see is hard to believe but trust us, what you can’t see we definitely feel. Please talk about how you feel no matter what those feelings are. Stay Strong and Reach out if you need too…..I am here and do not worry if I have already touched on a subject..lets chat, ask questions! Together we can push each other through the shit. We did not ask for this life….but I wouldn’t notice the stars in the sky with out it. This disease that is killing me has reminded me to live…..I take NOTHING for granted, not anymore.
While screaming through the pain……do not forget to Laugh, take time to look at the stars, LIVE……..Because Life is not stopping because we are suffering…..XOXO
Thank You Belle…I really needed these extra spoons
P.S I get an overwhelming amount of emails in regards to relationship issues and chronic illness, So I am going to do a BIG post on this topic. If you have questions or want to add your input please message me! It is nice to get others opinions…..Thanks 😉 Maybe we will do a LIVE conversation too!