A little Bit of everything

I received a few emails on the following topics and decided to answer them all here in one post
1. Do people really treat the sick differently as far as friendships etc? How do your caregivers families treat you and is this common?
2. What do you go through on a regular day and what are some of the effects of your health
3. Do you only blog on bad days?
4. What do you think is positive in your life?

First off we are all different, we all have different expectations, we all see things differently. This is MY post, this is how I see my world.

Love each other deeply, because love will cause many sins to be forgiven. Open your homes to each other, without complaining. Each of you has received a gift to use to serve others. Be good servants of god’s various gifts of grace. 1 Peter 4:8-10

1. Do people really treat the sick differently as far as friendships etc? How do your caregivers families treat you and is this common?
…….The answer to this is YES, and this is not just in my case. I have talked to hundreds of people with chronic/terminal health issues and this is on the top of their list for things they dislike about their condition. Some people will run when they are afraid or when they know they can not fix something.
I found these comments on Oprah’s blog awhile back, ” While women turn to friends, counselors, or groups for the help they need, men don’t. A man typically relies on his spouse as his main confidant, and when that spouse is sick, he can find himself in a downward spiral of isolation. “You can end up with an alienated individual,” says Louise Knight, a social worker at Johns Hopkins Kimmel Cancer Center. “He doesn’t have anyone to hang on to.” ”
Ironically, a fear of abandonment may also play a role in a man’s decision to leave, says Marisa Weiss, MD, a Philadelphia oncologist and founder of the nonprofit organization Breastcancer.org. Men tend to be less emotionally resilient than women, and a husband may withdraw from his ailing wife in a subconscious effort to minimize the pain he’d suffer should she not survive.” – Oprah

So as you can see, it is common for someone who loves you to leave. I personally have been told that it was to painful for someone to watch me die and that he felt like he was dying too. I even had my best friend of 20 years turn her back on me and say that just couldn’t see me sick all time, it was just to hard on her. So it is not just men who up and leave, anyone can. the mental pain that i experienced when these two left my life was astronomical. I was in the middle of liver treatments when the first happened and all i wanted to do was die. I could not understand how someone who promised to be there through thick and thin could just wake up one day, say this and be gone. My whole world was shattered. Then my best friend left me never wanting to trust again. I think it takes a strong willed person to take on the responsibility and the heartache of taking care of someone like myself. I need serious commitments! If you cant be committed to me, please do not waste my time. It is a job, a full time one, you do not get a day off. This is why i feel it is so important for family and friends to get involved this way people can take breaks or have a shoulder to cry on or an ear to scream in etc. Unfortunately the relationships that i have been in while sick do not have the most nurturing families(including my own) so we find ourselves taking it all on, which is very hard. It is just us against everything! This is very frustrating because we have done a lot of traveling, contacting etc for family but rarely have it reciprocated. Being as sick as i am has opened my eyes to how prideful one can be and in denial. I once a few weeks ago was sitting with my grandma and she and i were talking about how sickness should bring people together not push them apart. It was her who said Pride can get in the way of a lot of things. I will miss her when she is gone. She has been a huge blessing in my life and she loves us so much and what is amazing is you can see the love she has for us, it almost makes up for the lack of love we get from others.
While we are talking about relationships, this is why it is so important to keep your promises to us. We live in our bed a lot, we do not get out very often so knowing someone is visiting can be really exciting, even if we just end up watching a movie from my bed or just sit and talk. It is interaction with someone.It is something positive to look forward to, it can make a painful day a decent day. You have no idea how happy we are to visit with people or try to do things with others. And when people cancel or whatever we go back into sadness. I live in my bed, so for me to have a visit is awesome! I think in my case, you just have to keep an open mind, have no expectations of your time with me.

2. What do you go through on a regular day and what are some of the effects of your health
I think i talked about this on an earlier blog but just in case i did not here is a slice of my day….
….I am TERMINAL.(although i do not try to think this way, as all of us are terminal the minute we are born)but this is what call you when you are diagnosed with what i have. I personally like the word “chronic”. I AM fighting everyday to enjoy TODAY and pray that i have a tomorrow. I live on the “Spoon Theory” By Christine. If you do not know what the Spoon Theory is, read the Post before this one. I am exhausted, weak and i am in A LOT of pain everyday! Not just on Chemo med day or the day after BUT everyday!!!!! Once i wake up(some days i just sleep the entire day) i have to lay there for at least 30 min until i know i can stand on my feet. Then i shower because over the night my body sweats really bad due to my body temp going all over the place. Then i try get dressed, have a banana and then decide on what i will do today depending on how i feel. If i know i have a good 2 hours before i have to go back to bed, i will walk my service dog at them Marina( i do this for 2 reasons, it is great to walk and second it gets me out of the house) If i know i am not able to drive, i will then just go out to the couch and watch tv before i fall asleep. Now during all this, i am taking several medications throughout the day, it is about every 3-4 hours that i am taking pills on top of the pain patches i wear and chemo med fridays. Everything has to be timed and noted in my health notebook. Here are some day side notes***
Sometimes i will spend more time in the bathroom, throwing up and or bleeding everywhere. Sometimes during these “bathroom issues” i will become so weak that i must lay on the bathroom floor until i am strong enough to crawl back to bed. I get mouth sores, and other painful sores. I get headaches that nothing seems to take away. I am losing so much weight now that the Dr is concerned. Chemo drugs make your belly hurt and you do not want to eat much. Also my hair is everywhere, and i DO NOT mean bedhead, i mean my hair is falling OUT and it is everywhere. Sometimes i just sit and cry in the shower because it is all over the shower floor when i shower. My hair might look ok to you but that is because i was blessed with super thick hair that is now becoming thinner by the day. My skin tone is changing on my skin and it makes me feel like an alien who is shedding her skin. AND LET ME TELL YOU ABOUT THE PAIN…..I have pain in my wrists, hands, toes, ankles knees, hips and the worst of them all is my SPINE. It hurts to sit and or walk most days. I hate being in prison called my body.
Before i was diagnosed i was finishing my bachelors degree in criminal justice, i was an active mom, i played the drums i had goals. Today my goal is to make it the Marina for a walk with my service dog, to eat at least a banana and a shake, to be able to go to the store.
I hope you now have a small idea of what i go through each day, so lets move on to how i feel about it. I am devastated, i am depressed. Everything that i ever knew i have watched slip away. And sadly as i discussed earlier,that includes people. It is a lot of “dealing” with things. Accepting how things are and will be. Some days it takes all i have to be and look “strong” so that i can be around others. My diagnosis was a complete change. I thought surviving ovarian cancer( i had a tumor on my right ovary when i was 24 and they did an emergency full hysterectomy) was going to be my life altering thing on my list but it was just the beginning of a very long story which is now my life.
“He gives strength to those who are tired and more power to those who are weak. The people who trust the Lord will become strong again. they will rise up as an eagle in the sky: they will run and not need rest; they will walk and not become tired.” Isaiah 40;29,31

3. Do you only blog on bad days?
…..Someone told me i need to be more positive when i blog. How easy it is to say that to someone, especially when that person has no idea what you go through on a day to day basis. When people say this, i invite them to spend a good amount of time with me, so they can experience what i go through but no one ever wants to do that. Outside of my health i am a very loving, caring person. I personally do not believe that i am negative about the life i am living. Do i have negative thoughts sometimes, YES. We all do! I am afraid of the dying process. I am afraid the Dr’s are not treating me like they should and or not treating my disease like they should. I am tired of people Turning their backs on me because they are afraid and it is much easier to walk away then just take my hand and walk through it with me. I am afraid of trusting all the wrong people. Who leave me this time? I am afraid of being vulnerable. It is all these fears that i write about so that i do not let them fester inside me. That is why i tell what is real about this disease. Most sites i find on my disease people write about only the positive things in their lives, i believe they do this so others are not afraid. Truth is what we are going through is crap! It is hard, real hard! It is scary! I am young, i am sad that i may not be around to see my grandchildren or watch my kids get married. Just like “normal life”, there is no manual. No directions i can go read to make it all better.This is why i write about how i feel through this journey, i want to leave a “manual” per say…i never had to someone who may need it down the road. It is important that they know that the road they are now on is hard but it will still be full of blessings once you open your eyes. As i have stated before the suicide rate with my disease is 86%, how can we change that but tell the truth. We find ourselves lied to all the time. Dr’s tell us little white lies or make what is happening to us a little less serious. *******i have not told anyone till this post, so those of you who are in my life, i am sorry you are hearing about this here but recently i found out that i am NOT crazy about my spine pain. Come to find out we can get what is called Spinal Cord Syndrome and it is NOT rare like Dr’s want us to think, it actually happens to a little over 80% of cases. So you can imagine where my head has been for last couple days….if you have no clue, here is one of the articles that will inform you on how scary this is http://www.everydayhealth.com/news/when-rheumatoid-arthritis-turns-deadly/. And this is NOT the only deadly cause of death as you know i have it in all my organs already. So we now have to do more testing on my spine since my spine is the main issue outside of my legs if i had to pick just off of “pain”.
You the reader probably do not even know what is all going on with me as far as my health. So please do not judge me on what or how i write. Writing is healthy. Would you rather me paint my face with rainbows and unicorns and feed you some crap on how life is GREAT. If that is what you are looking for, move on……..

4. What do you think is positive in your life?
Now on the positive side, this has made me a better christian, a better person. My relationship with God is better than it has ever been. I have always been a loving, nurturing person but now, i just see things so much clearer. I do not want to waste anymore time. Every second is so important to me. Those who are in my life right now, i cherish so much! I see the flowers with more color now, i see the stars brighter, i do not take those who are with me everyday on this roller coaster journey for granted. I have so many blessings that i didn’t see before. Once i learned how to forgive, how to embrace my diagnosis, and many other things, i changed. I have more bad days than good but it if you saw me, you wouldn’t know that. I have faith that what i am going through is for something. I will leave you all with this….there is a carving that was left on the wall of a concentration camp that said, ” I believe in the sun, even though it does not shine, i believe in love even when it isn’t shown, i believe in God, even when he doesn’t speak.

Feeling low on ” spoons”

If you have no idea of what i mean, please read the Spoon Theory by Christine, here

This is such a great way to explain how i feel not just some days as i hear my friends ask..BUT everyday. Some days i feel i have one spoon. Please really take to heart the Spoon Theory, it really does apply to those of us who have terminal/chronic health issues. It is such a blessing that we choose “spoons” each time we spend time with our loved ones. While we are on this topic of blessings, i belong to an online support group who today talked about their chemo drugs and such and how not only the drugs affect their lives but how the actual disease kicks our butts. We are going through so much. We can’t do all of this alone.
Unfortunately i was surprised to find that i am not the only one who has people walk out on them or have family/friends ignore them. I just want to hear from those of you who walk away or ignore those of us that are sick. What makes you so special? How are you going to feel when we die or get sicker? Why? Why why??? In my case my family pretends I’m already dead. It is just us against this disease. No support. What BLEW my mind recently though was someone had a serious issue and thought we should drop everything to help/talk with them and my first thought was Seriously???? My advise, do not take for granted what YOU can use your endless spoon supply on,some of us are living day to day on borrowed spoons.

Waking up to fear

I can’t for the life of me stand these mornings and what is worse i can’t even predict when they will happen. I wake up and it is total fear and panic. I can’t breathe and it feels like today will be my last. My blood vessels on my chest are blown, i want to hide, i want to run away and die. I feel so much fear. Then the depression hits me hard and i just scream and cry WHY is this all happening to me, why do i have to be sick. Why why why??? I feel myself fall apart into pieces. I am tired of being strong.
I hear these days and or nights are common when you have chronic/terminal illness but no matter how much you KNOW about them it does NOT prepare you for them. Its my chemo drug day and that still stresses me every week and now i have to feel panicky and scared too?! Then i realize i am home alone which only intensifies this panic attack. Why is it i get so much “love” on Facebook and at church yet i find myself alone a lot?! I have thought a lot about this often and also ran this by a few of the ladies in my online support group and we have all come to the conclusion that it is hard for others to deal with us because they do not know what to say to us or how to comfort us so its easier to just see us once a week at church or whatever and or tell us nice things on social sites like facebook and then go back to their normal regular lives. Which most days does not bother me but on days like today its hard! Can you imagine a dr one day telling you your terminal/chronic and nothing will save you but here is a handful of pills to take daily. which we hope will give us more time with our families and or keep us comfortable while our bodies kill us. Oh and did i mention each one of those pills has side affects?! Then we go home to people we hope will love us unconditionally, only to watch many of them turn their backs on us. Then we have ” real” life issues still like money issues, bills, kids etc. I remember someone saying to me one time, you should just take care of yourself” Life doesn’t stop just because we are terminal/ chronic so saying that to us does not make it so.
On top of that i hear all the time how good i look so how could i be so sick?! Seriously??? Its my cells that are killing me.. Not my outside looks. I can bring in some scans that can show you my sick insides if you would like. I get so frustrated when people say that..I am sure its not meant to be mean but it hurts me when you add the “how could you be so sick part”
It feels good to hear i look good so please do not add the rest of that statement.
I was told by one Dr that we have these severe panic attacks because we hold so much in and do not talk about it. I try to talk about my fears and how hard life is for me but sometimes its just so depressing to both me and the person i am talking too. And sometimes i just do not trust anyone enough to bring them into that side of my life(be vulnerable)because every time i do many people hurt me later on by being a bad friend. A bad friend to me is one who always says they will spend time with me or help out when i need it (fridays)and are never around or always have an excuse of why they can’t help me( especially when it is them who make and later break the plans)which hurts because i do a lot for my friends and i try to be a good friend. Even with my health i go out of my way to visit people and or make plans with others. I am told often that people will do this or that for me but then they don’t follow through. No one is perfect but this happens several times not just once.
I hear about how much people love me but actions speak louder than words. I spend 90% of my life in bed/ couch due to my health yet have little to no visitors. Thank goodness i have God to talk to 100% of the time or i would not be here still.
With that said i want to thank jessica, ashley and taylor for a fun monday. I loved being around the kids and having adult conversation! It has been awhile since i have been out and it was nice even if it was just for a few hours. Thanks 🙂
A big thanks to Rhonda! I love you so much and you are always there for me via a phone call! Wish we lived closer!!
Thanks to my support girls via RA groups, you all let me know i am NOT alone!! Hugs hugs hugs
Thank you always Tyrone, your music always gets me through the good and bad days! ❤️
And thanks Nathyn for your sweet message to me, i was having a bad day and you reminded me what i am fighting for! You are wise beyond your years! 🙂

Anyways i had to get this off my chest, now its time to take a med to shut my system down before i take my weekly poison. Have a great friday everyone and remember to be a good friend to everyone. Be a good family member/ friend do not just call people when YOU need something or expect someone to always drive to you or do stuff for you. Family & friendships are a two way street. If all of a sudden you haven’t talked or seen someone ask yourself if you have been doing your part to cultivate your relationship. Just like GOD, friends should not be your 911. You never know what someone may be going through! We all have our issues.
I can’t wait to be with our father where there will be no more pain & sorrow. ❤️

Happy Friday ;-)

I hope everyone is having a great Friday…its Friday after all……..

I am having an ok day but tonight’s chemo meds i am sure will change that but its ok. I have come to terms with my meds that i have to take every Friday. They are hopefully giving me more time with those i love, so it’s just going to have to be OK. I am hoping to get out to Donner Lake this coming week so if you would like to visit with me, please let me know ASAP.
I have been working my legs a lot lately by walking my Service Dog around the Marina in Sparks 2-3 times a week. Although i am exhausted afterwards, i know i am telling my body that i am still the boss….and it puts a smile on my face when i get to watch my service dog have some fun at the Dog Water park.
My head is still hurting, i have not done my other MRI yet to see what else is going on, so for right now we just know my C7-C8 is swelling. Awesome right?! Still having the pain in my left lung and in my spine which i just love!!!! Sometimes my pain meds work and sometimes not. This disease sure has pushed me on several different levels. But this is MY life now, this is who i am. I trust in God and what he has in store for me. Anyways just wanted to jump on and say Hi, i am not ignoring anyone, its been a long month…just imagine having trouble getting out of bed EVERY day…..as always thanks for all the love and support infiniti kari

Just a quick update

I am very sorry i have not written a blog lately and or answered emails as i have been very sick. And with sickness comes a million other issues that need to be addressed. I hope everyone is out enjoying their summer. I hope to visit Donner here soon either this week or next as Donner is special to me and i really need to go to my special place and reflect on life. I promise to blog later this week, as i feel up to it! Infiniti Kari

Keeping your head up against the odds

Sometimes it is all i can do to keep my head up! Everyday my body is in pain every hour. I get very little pain breaks. And then their is my fatigue that is also present. I am told this is all part of multiple organ RA and to just deal with it. How do you “deal” with this?! I have found that no one wants to hear about the pain i am in or how I’m tired all the time…so what keep that inside too? Hold my head high and “fake” it.
I want to be around those who have compassion and help carry me through these hard tough times. Listen to me even when all i am doing is complaining. I have no reset button, i am stuck in this life, with this horrible health issue. I wish others could hear the way they talk to me sometimes. I would rather have someone say, hey this is tough on me today rather than shut up i am tired of hearing you cry and complain. How do you expect me to hold my head high after being beat down with those words?!