I thought that I would do something different this post and talk about a new journey that I have begun……………….
Lately I have felt so overwhelmed because I feel that NO ONE is doing much for my health except feed me chemo meds, biologics, steroids and pain medication. Between Big Pharma and all my “specialist’s,”I am broke all the time and my health stays the same. This fact alone drives me crazy. I am so tired of $1600 bills for 5-10 minutes of “Dr time.” I am tired of filling out paperwork to get assistance to help pay for my medications that cost $1135 a month. I am tired of it all. Health Care sucks.
All of this has prompted me to search for answers on my own. Outside of eat this or that (which does not work for anyone,)exercise more, be positive, I have been reading a lot about Adverse Childhood Experiences and how trauma affects our lives including our health. For me this makes complete sense so much that I have taken some steps to work on this part of my life. If you are curious about ACE and or want to take the main test….click on this link ACE
Just like changing your foods, exercising, positive reinforcement and medication; ACE may not be your answer. However for me, talking about my negative childhood/adult situations may be helpful and at this point anything is better than nothing. Until recently I had very little knowledge on how much trauma affects the body. To date, I have tested high on 2 ACE tests which has prompted me to really dig into this subject. Several physicians along with Kaiser Permanente have done research on people with autoimmune diseases, cancer and heart disease and found out that trauma in children and young adults leads to Chronic flight, fight or freeze states. The US National Library Of Medicine National Institutes Of Health in 2014 put out a publication that researchers of Yale found that when inflammatory stress hormones flood the body and brain, they alter the genes that oversee our stress reactivity, re-setting the stress response to a High. This increased inflammation, which can later manifest to cancer, autoimmune disease and other chronic illnesses.
Some ACE facts are:
64% of adults have experienced at least one or more adverse Childhood Experience.
The more ACE’S you have, the greater the risk for chronic disease, mental illness, violence and being a victim of violence.
People with an ACE score of 4 are twice as likely to be smokers and seven times more likely to be alcoholic.
People with high ACE scores are more likely to be violent, to have more marriages, more broken bones, more drug prescriptions, more depression, and more autoimmune diseases.
People with an ACE score of 6 or higher are at risk of their lifespan being shortened by 20 years.
ACE’S are responsible for a big chunk of workplace absenteeism, and for costs in health care, emergency response, mental health and criminal justice. So, the fifth finding from the ACE Study is that childhood adversity contributes to most of our major chronic health, mental health, economic health and social health issues.
If you score high on the ACE test too, it might be something you want to look into also. My opinion is this….what do we have to lose? I once read that all disease is multi factorial, so why are most Doctors only trying to fix our body and not our mind?
Do I believe this is going to fix everything….No but I believe that this process(which so far has been hard) is going to be helpful and if it does more than my expectations then GREAT. I want my body to know that I am still in this fight and that I am willing to do whatever it takes to make even a little difference because right now I am just sitting here waiting to die. This is no way to live.
With that said, I will be sharing my trauma with you all(IN THE NEXT FEW DAYS, in a dedicated post titled Childhood Scars,) for 2 reasons:
I know it is hard for any of us to share such personal stuff BUT if my story can help just 1 person then everything that I am going through is all worth it….for the most part ;-P
Sharing is therapeutic and it is a part of my journey
If you want to share your story, please do….if you need my help, my hand is here to pull you up…You are NOT alone……OXOX
I thought I would jump on here and give an update….and talk briefly on a subject I am asked about a lot.
Some of my blood work has come back and everything and I mean everything is either low or high…
I have a Dr appt next Wednesday and one on March 1st. I have no idea on what the plan is yet…..Who knows what the Dr’s will do or not do. At this point I just feel overwhelmed and scared of what is going on inside my body. In the meantime I am still on the higher dose of chemo/biologic mix, which is making me miserable. I hate how much I throw up, the headaches are just awful, the internal bleeding is off the charts and I feel so exhausted.
I know I have not been up to answering all the emails I get but I will try to get them as soon as I get some damn energy. However lately many of the emails I have read touch on the way people treat us. I know we talk about this quit a bit but it obviously is a main problem with the chronically ill. I think the more we talk about it, the more we can comfort each other and maybe just maybe we can educate those who need to be.
So here is my advice….and trust me, this is hard advice, some I need to take myself…
First off NONE of US are PERFECT and Chronic Illness is NO JOKE. Life with us can be hard. With that said though us being sick in my opinion should be the worst thing we have to deal with. Dr appts, poison meds, physical therapies, Er Visits, not being able to eat what we want, starving, vomiting, bleeding,blood draws, feeling fatigued etc SHOULD be enough negative for ONE person.Don’t YOU think?
I am sorry that some of you have crappy family/friends( i HAVE them too.) I think that we all need to take a moment and think about what we want in our lives. Is all this heartache worth it? Is this what we deserve? The truth is we need people like this…
and when they are not like this we need to be able to…
And I know this is easier said than done but..
In some of the emails I read that some of you are afraid to be alone while sick so you put up with people who do not treat you like they should. I get this 100%, it is scary being alone with out being sick so of course adding sickness would make it even more scary. It is zero fun going to Dr appts or to the ER alone, I have done it before and it sucks. Being sick sucks and I do not know about you but I feel so helpless when I am alone. I feel like an abandoned child. Instead of asking what is wrong with the people in my life, I always ask what Is wrong with me? I am beginning to realize I have no control over how others will treat me, I can only control the way I allow it to affect me.
Just how we have to pick up ourselves from our health issues, we have to pick up ourselves when people knock us over. The only difference between the two is this….our health we can’t change but the people we choose into our lives we can!
I love this quote….
I think that sometimes we get so caught up in this thing called life that we just settle..we settle for something “comfortable and familiar.” This is Not living. Life is short as we know all too well. So forgive those who are not kind or supportive of us and then walk away….you never know what your future holds….
Just because we are sick that doesn’t mean that we deserve nothing else good in this life. Through this health journey I have had many ups and downs with who I allowed on my path. I sometimes find myself crying/hurt over who is and who isn’t on my path. As my health got worse, I watched people run away or treat me not how I would treat them and I learned that it was easier to push everyone else away in fear that they too would run or begin to treat me differently. It is so hard to be told I am loved only to hear later on that my health is TOO MUCH, that I am to sick to be with OR lay here wondering why I am not loved……….my conclusion is that……
On a POSITIVE and Final note……
Enjoy the Good days, push through the Bad and choose wisely who is allowed on YOUR journey…
Tonight I sit here thinking of so many excuses on why I do not want to do this life anymore, not because I want to die But because I am so tired of all the pain, the meds, the doctors, the hospitals, the needles, the sleepless nights…TIRED OF IT ALL.
I have never felt so helpless, this shit just never seems to end and nothing ever gets better no MATTER what I do. I am so tired of doing chemo drugs that do nothing but make me feel like shit. I am tired of all the meds that are making my skin peel off, my hair fall and all the other not so fun stuff, I am sure you would rather not hear about. I am TIRED of these damn diseases that together are attacking all my organs and destroying everything in their path. I am tired of being tired, I fucking hate being in a bed 80% of my life, laying around is NOT LIVING, so why do I have to do it? I am tired of being angry at the doctors because I feel that I am just a number to them. they could care less that when I go home I suffer in silence. I am so tired of trying to get them to understand that you can’t just “treat” my diseases by reading out of a book. I need them to HEAR me. I know they can’t cure me but they do have ears to HEAR me with and if they just did this ONE fucking time they would hear my pain. Chemo and biologics are not the answer to everything especially when I have been doing this regimen for years….YEARS! I am not getting any better and the suffering has tripled. I am so DONE.
I believe God has a purpose for all of us, I just wish I understood what mine was, because my grip is slipping from his hand and I am afraid. I want all this to end, my suffering is becoming to much for me and I am tired of pretending that I can do this.
Why does life have to be so hard sometimes? Why do we all go through the things we go through? I find myself asking these questions all the time. I hate that I spend my days battling diseases that I am not winning or even getting a handle on. It is so time consuming and mind rotting. I just want a break even if it is for a day or two. I want to clear my mind and go for a long walk. I just want to breathe. I want to feel the wind on my face.
So it has been a few days since I first started this post. I had to step away because I felt so overwhelmed with how I was feeling. Today I definitely can say that while still scared, I do feel a little better than last week. Sometimes when you get caught up in all the drama of your health, you lose sight of why you are fighting. Now do not get me wrong, I still feel the feelings, i wrote above but today I have the strength to pick myself up and keep going.
I guess in a way we ALL are heroes, We all go through shit…
We just have to remember to keep standing up and fighting. This life is a battlefield.
When I am consumed with all this scary health crap, I forget God said….
If you are battling with your health or something else tonight, give yourself a break! And If it is getting, “To dark too see” write or talk about it. You got this! More importantly you are NOT alone. All of you “spoonies” remind me all the time..OXOXOXOX
So far all we know at the moment is that my platelets, RBC, WBC, Hematocrit are low and my liver enzymes are high again. I have more tests to take and a few Dr appts this month. I am hoping to know a little more in the next 2 weeks. I am still having some pain but my pain pump and oral meds seem to be working once again. Please pray they continue to do their job as I hate going into the hospital.
Today I actually went into work which felt great, it reminded me that even though my body is killing me, I am still in this 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 must be honest and tell you all that it is taking all I have to do this post. I am unsure if it is due to one thing more than another..I just know that my head is consumed with so many thoughts right now and I am having a hard time organizing my thoughts. However I have received so many emails about how to get through the holidays with chronic illness so here is my opinion on the topic. And don’t worry I will give you my health update before I sign off 😛
So….the holidays are always a sore subject with me because they always bring on more grief than joy. When I look around during the Holiday season all I see is people running around with their heads cut off, people being greedy and selfish. I see very little compassion and love towards one another. And to be honest I was probably the same way until 5 years ago when the ground beneath me collapsed. Now for the record I already had a shitty family who I kept at bay, so this part of my life is nothing new. But what changed was the people I chose to put on my path. The lesson I learned when I was finally diagnosed was that some people put expiration’s dates on others. Meaning that now I was too sick to be around. Like my life all of a sudden had no value because my body was killing itself. Like I stood in some fucked up lottery line and walked away with the worst number combinations ever. Like I chose to be sick. Like I went to the Dr one day and received the worse news ever and as I turned around for support, all I saw was everyone’s backs as they walked out the door….OH wait…that is what happened…..all of a sudden I found myself battling my own body alone, broken and scared. Then you add all the “special, memorable” times we all love to be apart of like the Holidays and you can see how these times would be miserable.
After reading all the emails I have received this month, I see how much I am not alone in my thoughts and experiences. If you are reading this and feeling these feelings too, you are not alone and I am so sorry that you have to go through this. I know battling a chronic illness on its own is hell and we have to put everything we have into fighting our own bodies. We get no “breaks'” no “vacations.” Our health does NOT care whether it is our birthday, or thanksgiving or Christmas. It could care less. So why should anyone else care right?!
I absolutely love this drawing above because sometimes while I am doing my chemo, biologics, puking my guts up and internally bleeding that all I truly have is my own shadow and sometimes I can’t even find it. Chronic illness sucks and no one understands unless they are suffering too.
Many of us can’t eat for one reason or another, so just the thought of going out to a fancy meal with others seems daunting. Then there is the lack of energy, i do not know about you but sometimes it takes all I have just to get out of bed. So the idea of “hanging” out with others during the holidays just sounds exhausting. It all just seems so unfair.
With all that said I have a few ideas for those of you who were asking for some advice.
First off remind friends/family of you limitation whether it be food choices or lack of energy. I have even gone as far as bringing my own food to get together’s. I try not to make specific plans and when I am able to get out of the house I take it slow and do not go out for more than an hour or 2. I always have my cane and all my meds with me for those just in case moments. I suggest making a “spoonie” outing bag. Also just be HONEST with others when you are at events. And who cares if people get mad because you can’t stay or eat what they have been cooking for hours….not your problem….kind of like how your health is not their problem….RIGHT?! and most importantly remember this….
For those of you who are “missing” someone this holiday whether it be due to a loss or because someone thought they were better off with out you……feel that pain, write it down, get it OUT and then take care of YOU. Your disease is with you whether you are miserable or not…so why make it even more miserable? The dead are dead and the ones who aren’t around are not worth a second of your time. Life is short…..try not to let others trouble your heart…………I know easier said than done……
On to my health crap….
Still doing this higher dose of chemo/biologic mix and still feeling like complete crap. Oh and the new thing I am dealing with is watching my own skin come off my face and hands. Still internally bleeding and my pain has been off the charts even with this damn permanent pain pump….I don’t get it and I am so damn TIRED
And in between wanting God to take me, I get to be like many of you and try to just PUSH through the holiday season like it doesn’t exist. I am beginning to hate this time of the year because I am reminded of just how alone and sick I am. I say this because there is no thanksgiving or Christmas dinners, and all the gifts I get during this time of year is all stuff that is for my health….Like all I want is fucking reminders of how sick I am…oh thanks for the warm socks because I have reynauds, thanks for the essential oils that may or may not help with my pain, thanks for the pillows to keep my bones from touching, etc……….I am sorry if I seem mean or ill spirited but it is like giving a woman an iron or a new dishwasher as a present or a man a lawn mower or suspenders…..
I would much rather get quality time with people than more stuff that reminds me of my shit health. Do you not understand that many of us are on borrowed time and fighting with all we have for another day, another month, another year…..maybe just maybe if you took some time out of your busy schedule, you could understand. I wish I could explain my health more so that more of you could understand my point of view.
In my perfect world I would healthy, I would be working at my dream job, I would have the people I love the most all around me and I would let them know every moment how much they mean to me. But instead I have a body that is killing me, I can only work Part time because of my health, and most of the people I love the most are no where in sight and the ones that are around choose how and when they love me…….So forgive me, if the holidays really are not my thing. Life just isn’t as bright as it used to be, and there is not much to live for anymore when you find yourself backed into a corner getting the crap kicked out of you. You can only fight for so long….
Keep pushing through my spoonie family……find things to laugh at, find things to do, just keep going….through all my hell this month….I have still managed to make these memorable moments….
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 just wanted to jump on here and tell you all……………………….I hope you all have a Happy Thanksgiving. I know many of us are battling something, many of us our own bodies and it is a HARD life but I want to challenge all of you to find something to be Thankful for. Sometimes we get caught up in all the negative crap and we get lost. We forget that it doesn’t always rain. The sun does occasionally shine.
My health has been the worst this year, I have never wanted to “Knock on Heaven’s Door,” as much as I have this year. It takes everything I have some days to find something to fight for.
With that said, I am so grateful that I write and share my story because I get to hear from so many of you and see that I am not alone. I receive so many emails and DM. I love how the “spoonie” community supports each other. But more than that, I love how I have an outlet to express what is my head. Today as I updated my site, I was quickly reminded of how much I appreciate the people in my life. So Today, I THANK ALL OF YOU……..You may think you do not do much, but truth is you do just enough(most of the time)(and hey none of us are perfect and it IS hard having me in your life :-P), BUT you give me something to fight for. Thank YOU Brian and Zoe for being my “family.” Thank you Ken who saved me from 24/7 Bed Rest and Introduced me to some of the most amazing people I now call my RGR family <3
And A HUGE thank you to my spoonie family, without you I would feel so alone. So i took out my “sick days,” “hospital days” and below is days you all gave me….Thanks again…..
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
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…..
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