Too close to Home

This post is going to be a little different as I want to touch on the events of October 1st.

I do not want to go into it to much as I feel we all could use a break from this horrific event however, this event has weighed heavy  on my heart and it helps when I am able to express things like this via words. A few friends of mine were at Route 91 Harvest and witnessed the horror we now call October 1st. I am so blessed that they are now at home and safe! You never realize how important someone is to you until you almost lose them. Sometimes I get so caught up in my health shit that I don’t think that anything else bad could ever happen to me. This was a big reminder that shit can always get worse. Alisha and Derek I am so grateful for our friendship. Love you guys 🙂  Take NOTHING for granted!

On to my health update…

I am so tired of people asking How I do it…..Does this answer the question?

All I really want to say is……

I can not believe how much pain I have been in lately. I am tired of Epson salt baths, hospitals, pain meds, heating pads, screaming, kicking and begging God to take me now.

My pain has been the reason why I have not written in a while. I barely make it to work. And when I do go to work, my body kicks my ass afterwards. I am so done dealing with this shit. It is so lonely. No one gets it unless they have the disease. I have been looking for a way to explain how i feel and this picture below kind of explains it…..

My body never lets me out of the jar. 🙁

Then I go to the Dr’s and no one seems to give a shit that I am internally bleeding and in more pain than I thought was possible. 

Sure my pain specialist has turned my pump up but it has not helped at all. I keep telling him that this medicine in my spine is NOT working but it goes in one ear and out the other. And my disease specialist just says…..”lets up your chemo drug dose.” OH OK ya that sounds great…..I really wish I could touch them both and they could feel a moment of my pain and frustration. It is really hard to go through all this and mentally keep positive. The doctors wonder why suicide is high with chronic illness/pain……GEE I wonder?????!!!  Speaking of suicide, next month I will be doing a post all about suicide/mental health/where you can get help and where you will not get any help, chronic illness and suicide and a whole lot more.

 !!!!!!

 

I promise to get to questions that some of you have asked next week, this week I am still in so much pain and it is taking all I have to write this much. I just pray we all make it another second, another minute, another hour, another day.

Remember……

AND just in case you need  a meme to those you wish would shut up and stop telling you  what they would do if they were sick like eating this or that….

 

Until next week……….Hang in there spoonies…….Much love

Mid September Health Update

 

Just like last month, I have been busy entertaining local hospital Dr and nurses  

Apparently my disease hates me or it just really likes the attention it gets at the hospital. Either way it is really beginning to wear on me. I hate going to the hospital and explaining over and over what is going on, I hate all the meds they add to my already shit list, I hate being in so much pain…..I just hate it all and more importantly I can feel the depression seeping in each time I have to go in. It all can be so damn exhausting mentally and physically.

My pain specialist however removed one of the drugs from my pain pump that has been causing me issues, so I am praying that in a few weeks some of the negative side affects will be diminished. In a previous post I went over my pain pump surgery, but have never really shown how they refill, so here are some refill pictures.

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And to be completely honest, I still do not know if I like it or not. It has been 6 months since surgery and I am still on the fence. I know it has helped many people but I also know that it is not a fix for everyone. I am praying that with a few changes, it will finally work for me…..so please keep me in your prayers. My other specialist raised the chemo dose again and told me that we can revisit a change of meds in 8-12 months…..This made me very angry…..It is times like this that i wish that I could touch people and give them my pain and misery for ONE DAMN DAY. She can say what she wants and then she gets to go home and live her life…

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I know that I am not alone in how I feel and somehow, sometimes this comforts me. This is why I choose to share my health journey with others because I hope that someone may find comfort in my words. I truly believe this….

This week I did my higher dose of chemo in style….

Unfortunately at the same time, i watched my 49ers lose to the Rams….UGG  Double CRAP NIGHT!!

Lets get it together 49ers 😛

I have not had time to check for “questions” you all want answered but I will get to them hopefully next post. I am to tired to go on a “bitching rant,” so no “bitch” section this week either. I know you will all miss that section 😉

So here are my final thoughts….This week has been extremely rough on me, actually the last 6 weeks but I still am IN the fight. Just because I talk about depression or frustration with my illness does not mean I am done fighting. Do I think I am on the tail end of fighting…YES….and I am OK with that. I can feel my body getting weaker and I feel that my fight is almost over however I will fight till the very end! I will Live to the best of my ability each day God gives me. I am going to keep standing up when my body says Fuck you, I am going to keep working until I can’t stand anymore, I am going to keep doing things, I want to do even when others think I can’t, because I am too sick………****Side note**** to those of you who think you are going to keep getting in my way…..YOU better move…I am not letting my disease DEFINE who I am….You might see me weak because I am sick….I see me strong(most of the time) because ALL my cells in my body are trying to KILL me and I am still HERE……

To all my spoonie family…..

Never give up! XOXO

 

 

Chronic Illness & Relationships

 

 

As promised this post will be about Relationship & Chronic Illness.

This topic is brought up more often than not. I get over 20 emails a month in regards to relationships whether it be romantic or just friendships. Health Central Website states that Disabled women have the highest rate of being victims of personal violence of any group in society today and they are twice as likely to be victims of Domestic Violence. Before we get started, I want to share this quote that I borrowed from Heart Sisters, “Bottom line: this guy is killing you on the installment plan.“Save yourself. “Get out now while you still have the strength to leave.”

 

Before I get to everyone’s questions I feel it is only fair to share my own stories in regards to this topic…………..If you have been following my posts since the beginning then you have an idea on what I have been through with friendship/relationships. This topic is not only personal but a very touchy subject for me but I want others to know that they are not alone and that their experiences are more common than not.

My experiences with relationships since I have been sick have been all over the spectrum. People have pushed me away, left me , blamed my health for everything, treated me like trash, while others have been supportive, some have even been extremely smothering. The worst in my opinion out of all of these are the ones who say they will be by my side through it all, then suddenly leave.

They make all these promises and plans and just when you think you are going to be taken care, they rip your world to pieces. Not only are you left to pick your already broken body up from the ground but you are left with time that you can never get back. They tell you, “I love you but you are too sick,” “you are making me sick, “I can’t watch you die,” “this is to much for me etc.”This made me feel like an almost finished puzzle that a bully knocks off the table. The puzzle pieces fly in all directions, some are found, others vacuumed up, some are  eaten by the dog and some never found. I had already been through a similar long term relationship years earlier and to feel the complete devastation once more was almost more than I could bare. I felt like I was drowning in yesterdays horrors. I am truly amazed at how selfish and mean people can be.  I look back now and realize just how strong I really am, because I am still here and so are they…*wink

I have learned a lot through the years.  I only open to up certain people now and I certainly keep people at bay. Being sick is so hard and it takes up most of my energy, so i try to keep negative energy at a minimum. I have little energy to spare. This is why people always on their electronics while wanting to “spend” time with me DRIVES ME FUCKING CRAZY……Put that shit away or I will choose to be around others who actually want to spend time with me. I also do not like when people I have not talked to in weeks come up to me, hug me and then say, “i have been thinking about you,” OR “I have been really worried about you, how are you?” REALLY????? My phone hasn’t rang, nothing is in my mailbox, no one stopped by…….. Listen I know we all have a life to live and we all get busy but do NOT say things just to say things!!!!!!!!  I would rather you say nothing than bullshit me.  I may not ever see age 50, 60 etc so I want to LIVE while I can! I want to live it with people who want to live it with me. People who want to spend their energy on me when they can. Why should I waste my time with you, if you spend little to no time with me? Last time I checked it is a two way road…is it not?!

I am a Gemini-Cancer so I wear my heart on my sleeve for the most part, I will do almost anything for anyone. And even though I am an A personality, I have allowed some people to walk all over me and continuously stab me in the back….because I was praying that someday they would love me the way I love them. All of us have our flaws and trust me this is something I am currently trying to change, because time stops for NO ONE. I know I can’t change anyone, i can’t make so called friends/family be there for me like they say they will,I can’t force someone to love me the way I love them,  I can’t make others  want what I want, I can’t make a cure appear, all I can do is live to the fullest everyday my body gives me.

I know many of you who write and  tell me about your similar relationship experiences and you feel ashamed or not worthy of being loved. Truth is they are the ones that are not worthy of YOU being in their lives. Do you know how people look up to you for getting up everyday battling something you are not winning? Do you know how strong you are? God does have a plan for you! I know its hard, but you are not alone and believe me when I say, the right person will come into your life and when they do, all the pieces will perfectly fit.

**** Please remember there are 2 sides to every story and the truth will always be somewhere in the middle**** HOWEVER that does NOT take away from either parties feelings or the way THEY experienced the situation…..and it NEVER excuses any type of abuse PERIOD!!!

1. Do we have to be alone because we are sick? 

No we do not! But that does not mean that we need to be in an verbal or physical abusive situation. In my opinion if you are fresh out of a relationship, take time for you. You can do this, You do not need a mate to survive. Yes it may be hard but you can do it, many are doing it right now. Believe in yourself and reach out to other spoonies when you are feeling alone. We are here for you.

2. I am really tired of the lack of compassion. I am tired of feeling like it is just me. What I am I doing wrong?

You are doing nothing wrong. Some people are  not made(for lack of a better word) that way. I think sometimes we do not notice this character flaw(my opinion) until we need it. Chronic Illness brings out the ugly in all of us. We are miserable and in pain all the time and then our partners feel absolutely helpless and instead of explaining how they feel, they take their emotions out on us. I recommend having a sit down and see if it is something you can work together on. Communication is VERY important.

3. If people have trouble loving us now, how can we expect them to love us as it progresses?

This is a hard question to answer, however I would say, if you are asking this question about the person/people you are with/around, then they may  not be the right ones to surround yourself with. However I believe sometimes we are with the right person/people and this question can come into play and when it does, I would just sit down and have a conversation about it. Really listen to what the other person is saying. People retract when they don’t know how to help you…Remember NOTHING is perfect. We all stumble….it is is how we pick ourselves up out of the fall that matters.

4. Do we have time to keep forgiving others, should we just settle with the ones who are around us?

I really feel that this is an individual choice. You spend your time on what means the most to you. But I will say this…..If you decide to forgive it is a choice! You have to make it possible for them to fix it. If we set up a pattern that makes them feel hopeless the relationship can’t work because they can’t be forever trying to get back that trust. If you find yourself “repeating” the same old shit, after forgiving and deciding together to move on, it is time to leave. Take it from me, losing yourself in someone else while battling chronic/terminal illness is a losing battle. Sometimes loving someone new is better than repeating the painful past. At the same time the grass is greener where you water it…….The choice is yours.

So forgive and move on or just move on……either way do what is best for YOU, at the end of the day you have to be able to look yourself in the mirror. Do not forget to forgive yourself too. Whipping your own back will not make you stronger, it’ll only distract you.#thestrain 🙂

XOXO

 

 

 

September Madness

 

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

What a week…

Hi!!!

Weekly Update…

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 contact me here….

 

 

 

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!

 

We are in it for better or worse..Chronic illness that is

 My weekly update…

I left off last Thursday the 3rd. That night I did my poison meds and then went to bed. Friday & Saturday I spent most of  the day in bed. If you have been on any kind of chemo meds and or Biologic meds, you know those make you feel like shit. Everything in your body aches, some of us can’t keep food down and my body loves to do this fun thing called, internally bleed. Sometimes I am blown away on what we take in order to fight our own bodies. 

Sunday I made it work but was in a lot of pain. My legs have been giving me a hard time. Lately I wonder just how much longer they will be working. I am so afraid that soon, I will not be walking much at all. Just when I overcome one fear, another one takes it place. I know even when my legs stop working, I will overcome it,however right now, it is scary to think about.

Monday and Tuesday were a complete Blur as We tried to numb the horrendous pain I was feeling. I believe my Dr’s are running out of ideas and ways to keep me comfortable. I wish more could be done but I am beginning to think nothing more can be done. My only prayer is that where we are moving to, has Dr’s who truly want to help and that I will be more than a paycheck to them.

I am very grateful though to a few fur kids who always love me through the pain….

As Yesterday rolled around, I finally began to feel some relief. I am really getting tired of this 4-5 awful days and 1-2 good ones. This is no way live.

Today I was able to get up, take care of a few things and I  even made it to work. High 5 to me!!

Your Questions Answered 

This week i received 2 emails that were very similar so I am going to answer them together.

1. I feel alone and I do not know how to express how I feel. I am afraid my loved ones will push me away.  2. I met someone a few months ago who was OK with me being sick, but now he is pushing me away, what can I do to make him stay?

First off even though you might feel alone, you are not. Many of us are going through what you are going through. I do not know your situation however I am available to talk. I know how Chronic Illness can separate you from the rest of the world.  I know what it feels like to not feel safe in my own skin. I know what loneliness feels like. For those of you who might be reading this, the loneliness that Chronic Illness people suffer with is different that just being “lonely.” Many of us have loved ones around and or nurses etc but still feel lonely in the sense that, no one understands what we are going through. It is important to know that just because you are here in the room with us or whatever does not mean YOU GET what we are going through. No one really understands unless you are going through it too. And to be honest sometimes us, the chronic illness forget that the average person does not  “get” it. And that alone causes a lot of frustration for both parties. Often People Retract more when they don’t understand what you are going through and because they do not know how to help you. I believe this is true however it is NOT an excuse, instead it should be a conversation. 

In my opinion the best way to express how you feel is to be honest with everyone involved even if they do not get it. Tell them to research your health condition and then have an honest chat. If the person you are trying to “talk” to blocks you out….move on from them. Everyone has baggage, our health situation is just like someone having 5 kids or 8 marriages or some kind of abuse in their past, etc. I really do not understand why some people can not just accept and love those of us who are sick. People can accept all the other things I mentioned in the last sentence but can’t accept sickness, like it is a deal breaker. Seriously????

As far as “making” someone stay, I hate to say it but LET THEM GO. If you haven’t read my story in the, “all about me section,” please go read it. I know it hurts to go through this but you will come out the other end. Look how strong you ARE, did you forget you are fighting your body?! I know how hard that is! You are a fighter!! Do not let others take anything from you.

Stay strong and know that many of us are fighting just like you and are going through the exact thing you are. Please do not hold all that heartache in, write about, cry about it,talk about it, express your feelings!!! And then move on baby! Like I have said before, it will hurt and you may feel like the world is ending, I mean how unfair life can be..right?! We are battling a fight with our own body that most of us will never win, and then people have to come into our lives and do nothing but hurt us! What the fuck?! I get it! I truly do!!! Sometimes I feel like I did something in another life, something real bad, because why else would 90% of my life be so awful, so scary, so painful, so hurtful? What did any of us do to make ourselves sick, what did we do to make others want to leave? The answer is NOTHING.  You are NOT alone, and when you feel like there is no way out, please reach out! I really love this Johnny Depp quote…

Bitch Section…..

While everyone’s life goes on mine stays the same….it never changes, it is full of pain, grief, frustration, hospital visits, Dr appts, screaming, wanting to give up, feeling alone and feeling scared of what tomorrow may or may not bring. I get tired of people saying they are supportive only to do the opposite. Tired of hearing whispers of “I love you,” only to feel the knife in my back. I am tired of shaking the bed screaming every night while the world sleeps. I get so tired of explaining my health to others, i get tired of faking smiles, i get tired of fighting a fight i am not winning. I might write all the time but I keep so much inside because sometimes it is better to be Silent than have to go into deep detail about how I really feel. Some tears I will never share………….

 

 

Final Thoughts….

August is Gastroparesis Awareness month! This is one of the chronic illness’s I suffer from. Gastroparesis can interfere with digestion, cause nausea/vomiting, problems with blood sugar levels and so much more. There are a few different ways people get Gastroparesis and it affects people in different ways. In my situation, during one of my surgeries, my Dr cut my vagus nerve which paralyzed my stomach(gastroparesis.)

As you can see from my records, 90 min is normal halftime for food to make it from belly to intestines. Mine took 241 minutes. Once I was diagnosed the Dr told me that i would never ever eat solids again because they would never digest. I tried years to eat only liquid foods but ended up starving so I went back to some solid foods. When I eat solid foods this is what happens….this is my swollen belly. This can last for hours until my belly decides what to do with the food I should not be eating. Sometimes I puke up the food and other times i force it through with meds my Dr gives me. Either way it is very painful. Some of us with gastroparesis are very thin because we are all different. Some of us can NOT eat solids at all…PERIOD which make us very fragile and thin, some of us have thyroid issues/other chronic illness along with the gastroparesis which causes weight gain. Usually I am on the thinner side however right now I on a few medicines that make me gain weight. Gastroparesis also affects my blood sugar, which require me to take Glucose.

Side note***PLEASE do not say to someone who has gastroparesis and is STARVING…that they should be happy about how thin they are!!! Trust me when I say they are not HAPPY about starving and being bones. And do not tell someone like myself there is no way I have gastroparesis because I am not thin…..I will shove my diagnosis (shown above) up your ass…….

 

This is my beautiful Friend Cheryl who also has Gastroparesis. She is another beautiful soul fighting everyday to survive. She always amazes with her strength, she keeps going even when I know she wants to quit sometimes! Can you imagine being hungry but can’t eat because it hurts?! Everyone in her life should feel blessed to have her, because she is so special and just like Me, God has a plan for her too….I feel we are cut from the same cloth, we both are sharing our stories and trying to help others. You are a ROCK star Cheryl! Many prayers and love sent your way!!

AS ALWAYS thank you all who support us who are living second by second! Love one another and never judge a book by its cover….everyone is battling demons….

P.S…….

 

Sabrina

Sabrina’s Story

This is me now.
 
June 3, 2016 the day a stark new reality hit me in the face like a hot frying pan, I now have and will have for the rest of my life Rheumatoid Arthritis. At first I thought this can’t be me, not my life, but reality set in and in fact I would now live everyday waking day in some sort of chronic pain. I have been through the stages of grief, anger, hate, loneliness, depression, and so many other emotions that I still struggle with. I miss ME, the one who could clean the whole house and still be up for a hike. The woman that would get in her car and just go for the day. Everyday I miss me, the one thats still inside but my body refuses to let her out. I also go through the acceptance phase where I embrace and find a peace, those days do not come often yet they seem to be good days (weird huh?). With a family, bills, and just plain ole life demands I struggle to find acceptance of this damn disease. I struggle that I do not see my friends like I once did and that hurts, but my body just simple says not today (and believe me those days are more often than not). Even as I lay in bed typing this I have wanted so badly to get out of the house and just go to TJ Maxx to exchange something, I just have not felt up to it and have to work the next 5 days, so its rest and save energy to work and pay bills. 
 
I started this journey thinking I will just tackle everything with natural supplements and diet. Almost a year later and every natural supplement, holistic way you can think of, and with many tears poured I gave into the medication plaquenil. Medication scares me to say the least. It took me years to be ok with taking an antidepressant, because see I also suffer from GAD and I have lived with anxiety/depression since I was 16 years old. With that being said it took me 10 months to say ok to the medicine for the RA. You know the crap that slowly starts to shut your immune system down, because your body is attacking your own body, yeah thats the crap I am taking now. Yes it is the “baby meds”, but to me it’s not at least not at this point in time.The really really crappy part is I don’t even know if it is working yet because it takes 3 to 6 months before showing improvement and there is a chance I will have to go to something stronger. So everyday I wake up and the pain is there some days its mild some days its hard to even move. I do have good days here and there where I get a glimpse of what I used to be, sometimes that makes me cry and sometimes it just makes me smile. 
 
The future, thats a scary place to look into, and YES I have heard a million times “just take one day at a time”. It’s not like I don’t tell myself that and honestly a lot of time I do just that. BUT there are days and thoughts that you sit and wonder what do my days look like 5, 10, 30 years from now. Will I live long enough to see my children get married, have a career, have grandkids. Will I have time to grow VERY old with my husband? Will I be able to travel and see things that I desire to see, will my “bucket list” (boy does that become a reality) get checked off? So many mind swirling unknown questions that only time can answer and I can only have faith and hope to make it that long. Don’t get me wrong I do stop and smell the roses probably more so now than ever. All I can tell you is that from my perspective this has been the most mentally, emotionally, and physically challenging obstacle I have ever been through and I am not one to give up. I take days off, BUT I will always find a way to pick up my sword and keep fighting. Quitting is NOT an option!! 
 
 

Do Not Underestimate US

Happy August Everyone! I hope this Post finds you all doing the best that you can be.

Starting with this post, I want to do things a little differently. I want to break things up into these sections 1. My weekly update, 2. Your Questions Answered 3. Bitch Section 😉 and 4. Final thoughts

My Weekly Update……

 

Tuesday July 25th I was in a lot of pain and nothing seemed to help, and trust me I tried everything! I was able to get my hair cut. I hate to cut it all off but I am so tired of crying while I hold my hair as it falls out. I just need a break from that heartache.

Wednesday through Saturday, I was in  so much misery. The pain was out of control. These are the days that it takes everything I have to keep going. Sometimes I just lay in bed screaming for it all to end and I have learned that, it is OK to do that. I found this amazing art that I think depicts exactly how I feel when the pain is taking over.

Sunday/Monday July 30-31st I only worked a few hours because the pain in my spine and legs was still so unbearable. I often wonder wonder is my purpose here? Why do we all have to suffer in some way? Oh so many questions.

Tuesday August 1st I spent the day in Bed and spent the evening emptying my guts! Oh such good times! NOT

Wednesday I spent most of the day in bed.

Thursday I slept till 11 and then went to the store to get all the new foods for my new “fresh food lifestyle,” that I pray helps with anything I am dealing with. After eating some delicious food, i headed off to work. It felt so good to be out of the damn house and around other people! I am so thankful for my coworkers! They really know how to make me smile and I love how they put up with my picture taking….when I am gone they will appreciate all the memories i took pictures of….(thank you Moses for this awesome “chick” pic) HA!

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Your questions answered….

  1. How do you get your loved ones to understand what you are going through? This is a hard question to answer because truth is no one but someone else going through the same/similar issue will understand. Kind of like when someone is telling you how hard their divorce is, yet you have never been divorced. You can empathize with them but you really have very little clue what they are feeling. I would suggest for them to do research on whatever chronic/terminal/autoimmune disease you are battling. Encourage them to find a support system for themselves. I think it is a good idea to try and sit down with them and have a “real” conversation with them. This should include your fears, their fears, expectations, desires, wants etc. Be upfront with them, do not sugar coat this shit. Our lives can be tough and we need people with us who can be tough when we need them to be.  Even with all I am  suggesting, just be prepared that anyone on your path will fail you at some point, because we are all human and lets face it, taking care of us can be draining. I know it is draining on us too…It is just the way it is! If none of the above works, you can do what i do…I either keep forgiving or I just kick them off my path….Because time is short, we can either keep explaining/educating or we can just move on….I hope this helps 😉
  2. How do you stay so positive week to week? I actually found this question funny, because I do not see myself positive week to week. In fact sometimes it takes EVERY INCH OF ME to smile. So thank you for saying that you see me so positive, there is hope for me yet! HA! On a serious note, I work very hard to not be angry. Because I am angry, real angry! These autoimmune diseases have taken things from me that I worked very hard for. I have lost a lot on this autoimmune journey. On the flip side, I have made a lot of new friends who help me continue on this new journey. I have learned a lot about food and what is good for our body and what is not. I have learned to stop and smell the carnations. I have a whole new outlook on life. I no longer take walking, running, talking, dancing , singing etc for granted. With all that said the things that help me be positive is my love for God, my family and my small group of friends. Music is also a great tool I use. A friend of mine Tyrone Wells who is a singer/songwriter writes amazing songs that really uplift my spirit. Emily Hearn is also another great artist who speaks to me through her music.  I also push myself to work 10-15 hours a week, this gets me out of bed, out of the house and around people. This is very important. I also love to write, this helps get out whatever is in my head. If you find yourself battling demons, try these above suggestions, or do something that makes you happy whether that is shopping, painting, coloring, horseback riding, talking to friends, watching a movie etc.

 

Bitching is what I do best…. Ha!

The Other day I was talking to another Spoonie who has a lot in common with myself and we were talking about how people sometimes forget that we are sick. What I mean by this is they expect us to do everything and then some with zero to little energy and with severe pain. These last few weeks I am dealing with 10 million pain  (as i call it) but still go to work, go grocery shopping, do laundry, clean the house etc. As you can imagine, sometimes the laundry just sits there, the dog fur takes over the floor, i miss work etc because I just can’t physically do it all. So outside of everyone else’s expectations, I also put a lot on my self. For example I used to be able to do it all, I am an A personality which means I like it done the way I do it…the right way 🙂 LOL  So when I can’t get to this or that my mind goes in overdrive and I feel like I am failing at everything. This situation is the shits! 

I think this quote is pretty accurate for many people especially me.  When  i was younger my “A personality” would waste time arguing with everyone who stood in my way or frustrated me…. :-)…… but now I just sit and watch these types of people drown in their own bullshit. I definitely think more than I speak now…thank goodness for that! I guess we do get wiser as we age!

Final Thoughts…

I have been getting a lot of messages about spoonies doubting themselves and feeling like nothing will ever go right now that they are sick. I completely 100% agree with this. I get it, I am right there with you all.  I think sometimes we get so wrapped up in our own sickness that we can not find any way out. Personally I get frustrated with those around me who can escape me(for lack of a better word.) Brian gets to go to work and not have to listen to me in pain or watch me throw up for hours on end. People at work rarely see the shit I go through, they get the, “I am feeling OK Kari.” But for me, it NEVER ends. I always feel sick, some days are just better than others. I often get caught up in all the negative especially when I have not had a good day in weeks. I suggest we all once a week remind ourselves of what we have accomplished sick. For me I go to all the things people said I could not do…and then I just smirk…I have been so lucky to do all the things I have done..I love that I have that “push through” attitude!

I have taken many gun and knife classes,I also have done some pretty amazing things like go with Tyrone Wells on his acoustic tour. I am so blessed that we are friends! If you have not heard of Tyrone wells…please do yourself a favor!!

I forgave my birth mom even when nothing more came of it. When I am in so much pain that I just want to die and I am screaming for her, she never comes. For those of you who have your mom’s…take a moment and realize how lucky you are.

However, I am so lucky to have my BFF visit every year..cause she LOVES me…..just a little……

I miss you so much Rhonda. I hope you know what an amazing friend you are! You are my everything…OXOX

I am in the RGJ hall of fame…and I was part of the California NOH8 project.

I rode all the way with Brian on the MOTORCYCLE to Sturgis and back last summer…and I did it ALL while doing my chemo and biologics! That was NOT easy at all.

More importantly I have survived all of this and more…

    21 surgeries and a whole bunch of poison meds later…….And I am still FIGHTING! Never forget how far You have come!

We can do this! Do not only remember the Bad in our lives! Remind yourself of all the good you have done and all the memories you are making with others! I know it gets hard when some of us are taking our lives and or dying from health complications. I know its hard when you are spending all your time in the bathroom, in the hospital, in so much damn pain! Trust me this is how I feel 80% of the time…

“I can’t due this anymore,” is heard almost daily in this household! But somehow with the grace of God, I keep standing back up. I keep going.  I know God has a higher purpose for me, even though I do not understand what that is right now. I would like to think that it is because I am not done here even though I feel so tired of all of this….I really hope this quote is true…..not because I want to die but because I want this fight to be over. I am DONE fighting my body…I am tired…very tired……

Until next week….keeping hanging on even if by a thread! As always if YOU need to talk to someone who understands….Email me or DM @openkari…You are not alone…..I AM here….

 

 

 

 

 

 

 

 

 

 

The Resilient Beast

 

If you have been following my posts, you know that I took a month off of ALL meds. All of my tests are now back and none of them are good. (enter sad face here) My pain like I said last week has doubled, sometimes tripled. I guess in this case, the Dr was right when she said, “Stop meds and the disease will take over.”

So as you can imagine, this past week has been one I wish to forget but just in case you were curious, i will give you a readers digest version..

Thursday,July 13th I made an appt with a massage therapist named Kristin.  She was amazing and for the first time in 2 weeks, I slept the entire night. However by morning, I was throwing up and this went on all day. The massage therapist said that because I was back on higher doses of chemo meds, my body was unable to fight all the toxins that the massage put into my blood stream. Why does NOTHING seem to go right?!

Saturday I was able to hold some food down but was still in a lot of pain. Sunday I went  to work but by the time I left I was in so much pain, it felt like I could not breathe. At 10 pm I went into the hospital and did not get out till the next day. As you can see I was very thrilled to be at the hospital.  

I was grateful however as the Dr on call did try and help me, as best as she could. A few hours after these pictures, i decided to go to work as  I could not lay in a bed any longer. Besides two of my old coworkers stopped by to say HI. I look cute for being in the hospital all night. 😉 Make Up does wonders! Ha!

Tuesday was a complete blur, i slept most of the day. Wednesday I had two Dr appts. One of the Dr’s was great. He refilled my Permanent Spine pump and upped the dose in hopes that it helps with my pain.  The other Dr just irritated me by telling me that my new Chemo/biologic dose was going to be higher than last week. I get so tired of all of this shit. It is so easy for the Dr’s to tell me these types of things when they are NOT the ones who have to take it.

Thursday night I did the higher dose of chemo meds and within an hour i was feeling like crap. Friday and Saturday were awful, I did not even want to crawl out of bed. The pain was ridiculous, just the sight of food made my belly sick and of course the internal bleeding started back up. I absolutely hate days like this because NOTHING you do is right. You just have to push through it all and hope you make it to the next hour and so on.

 

So that is how my last week went. Today I keep reminding myself that it is a new day and that I have to keep pushing forward. This past week has been extremely rough and there was times when I thought I could not go on. It really sucked that when I reached out to several people to help me at the hospital then  got a million and one excuses the next day of why only a few got back to me. Look I know people have lives however the only people I reached out to were the  ones who said, “Kari, reach out if you need anything.”  So IF YOU DO NOT MEAN WHAT YOU SAY…PLEASE DO NOT SAY IT.  My health is no joke and when I reach out, i really need YOU. I have no family here and sometimes I need more than Brian to help. Many of you may not understand what it is like to be so sick that you have to take all these horrible meds, be in 24/7 pain, see your Dr’s more than your friends and then watch everything that you have ever imagined your life to be disappear before your eyes, but I am here to tell you it sucks. With that said, I would like to answer some emails I recently received…..

1. How do you “push” through when all you want to do is give up? Am I normal to think of Suicide?

Good question! Truth is I scream a LOT. I Pray, I pray God to hold my hand and walk me through it. Sometimes I get in my car and I just drive. I drive until my mind stops focusing on the pain. I walk till my legs say no more. I just find something else to do and If it is a day where I can’t move at all, then I lay there and I scream, and I pray and I see it through. Some of the emails i get in regards to this subject talk about wanting to commit suicide. I completely understand why you would want too, i know it hurts, i know what you have lost while your body has turned against you, i know people have left you, i know, I am here with you. I am going through the same things,  and you are not alone. I believe thinking about suicide is normal  but I do not think that we really want is  to die, i think we just want all the effects of chronic/terminal disease to end, the pain, the misery, the heartache, the loneliness etc. I think when we are diagnosed with chronic/terminal illness the Dr’s should be more proactive as far as making a plan for each of us. What i mean by plan is,  after being diagnosed, there should be a “team” for lack of a better word, that is put into play. A team that is made for each of us as an individual.

In the Midst of Chester Bennington’s and the 3 Spoonies from my support group who committed suicide, I would like to take a moment and discuss Suicide and how I see it. The word suicide should not be one we fear. We should be able to talk about Suicide with our Doctors with out repercussions. I hear more often than not how chronic illness people are afraid to talk about how they feel because they are afraid of being scrutinized and labeled. I think this is something that we need to keep talking about. It is a very important subject that many of us are silent about. I once read that,” Suicide is not chosen; it happens when pain exceeds resources coping with pain.” I really love this quote and i find it very fitting for many of us dealing with chronic pain/illness/PTSD. I AM almost always available if anyone wants to talk or you can call the Suicide Hotline at 1-800-273-8255. Suicide IS real, and should be talked about, please do not  Suffer in Silence.

2. Do you feel like a burden to those who love you? 

The only good answer to this question is YES. How can any of us who are battling some type of disease not feel like a burden to those around us? It is very natural to feel this way. Sometimes I can barely walk to the bathroom, or walk down the hallway and i have to ask for help. I used to love going to the movies, or go out to eat, like sit and eat but no longer enjoy these things because I am either in to much pain or so fatigued that I just can’t spare the energy. This is WHY i always tell people when they come into my life just how sick I am because they need to know that it is a full time job just taking care of me sometimes. This is also the very reason many people who are sick are left by those who promise to love them. I am NOT just the girl people see at work or at HOG meetings etc……and you are NOT just the person you are when out and about. At one point in time, we all wear a mask.  All of us must choose wisely who we allow onto our path……

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On a side note, I just want to say thanks to my cat who passed away last July…..Haussen you were my best friend. You never used my health against me in fact you loved me  through it. I love you everyday and you will be forever missed…….

As always thank you all for your continued support. I am so grateful to each and everyone of you. Remember to treat each other with kindness and know that EVERYONE is battling demons of some kind.  Have a good rest of the week…..XOXO