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! 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….