For my birthday this year i have asked for a table bed so that i can blog daily not just when i can crawl out of bed, so i am praying i get one. That way i can answer emails as they come in also( when i am feeling up to it anyways)! So get ready for lots and lots of posts as i have a lot still to say! Tomorrow i hope to put up a great article about ” blessing” your health instead of fighting against it. I know its easier said than done but whats it going to hurt to at least try it?! We have nothing more to lose! Anyways talk at you all tomorrow! Infiniti
Today was a huge reminder that this disease can and does control my entire life… I can not even get out for a ride & lunch without feeling like crap and when i say crap i MEAN crap. I was in tears at my favorite restaurant today because i was in so much pain and to top that off i then had to listen to people question my health… Why you ask?! Because i look pretty good on the outside… My answer to that is well thats because my terminal disease is inside! It is my cells that are killing me!! Maybe people like that would like to take my chemo for me next week, do my coming up MRI, deal with my other tests coming this friday oh and take on my daily pain and internal bleeding… Aarrg
Anyways this morning i really thought i wasn’t going to make it through the day but here i am blogging before i go to bed…Another scary painful frustrating day down!
So tonight i thought i would take a break from all the emails i receive and write just from my heart. Lately i have been struggling with bad health news. I thought after the main diagnosis that i could get through anything, but i have found that not to be true. Every damn bad test, blood, MRI, other just continues to break my spirit. And yes i know its how we respond to things that makes what we go through worse or not But i also find that those who say these things have not been in MY shoes. We all go through bad things and maybe you are able to get through your stuff with a smile but i would like to see you walk a DAY in my shoes. How would you really handle what i go through on a daily basis? I know sometimes we all want to tell someone how they could make their lives better but i personally think this is not an area i would ever tell someone how they should feel. I read that women with my disease commit suicide is huge, 56%. That is more than half, and trust me i get it! I know why they do it, the pain is so overbearing sometimes and their is NO way OUT. It is not ever going to end, sure we might get some meds that lower the pain level for a few hours but guess what its going to come right back. So you have to choose a life of drugs which really never work perfect or a life of torment. I honestly do not know which is worse. My Ra is Multiple Organ so it is in my organs not just my joints so i am in constant torment on drugs or off. There will never be a perfect fix besides death. This is the reason i decided to write this blog was to help others not take their lives. I know what they might be going through and i want to help them and i can’t do that if i am not here to do that, so for people who try and tell me to be more positive and blah blah blah so that i don’t take my life can just stop. I have not ever tried to take my life because i am sick, nor do i plan on it. I am going to let this disease do its thing and then the Lord will take my life. That is my plan. Oh one more thing, just because i have good genes and look “good” as i hear all the time DOES NOT mean i am not sick…this one drives me bananas! I hear so often, my Kari, you look so good how can you be terminal? Well cut me open and lets look at my organs…and take a look at my cells…..i can guarantee they look like crap 😉
So back to what i was saying….
Just because i say this though does not mean that i will not have horrible days that i think bad things or are negative. I am in constant pain and the more this progresses, the more body parts hurt and i take several meds to make me “comfortable” and it just doesn’t always work. Your body gets used to the drugs and a lot of them stop working and then you have to switch to something else and its just ZERO FUN. Then i am a guinea pig on other meds. I have asked to stop chemo drugs but i do not see the specialist till October,…..yep…i said OCTOBER….i am a number not a person when it comes to the medical world. So meanwhile we wait…..
Today i did some more testing and we should have those results next fri…and i will let everyone know whats going on….i pray that for once i do not get bad news because i am still recovering from the bad news a week ago…..
I swear this last week has been full of Tyrone Wells music and tears….its all i can do to keep my chin up this week, and its so lonely sometimes. It seems like everyone i know has kids and are busy, or they have moved away. I know neither of these things i just mentioned are anyone’s fault. I used to be a mother of youngsters and honestly i miss it, i felt like a person when i heard little footsteps all over the house. ANd being responsible for someone other than myself. I miss those days…
Speaking of children as i write tonight my son texted me that he loves me…oh how i miss him so much and wish he lived closer to me, as my days are numbered and the past has already taken enough days from us and i do not want to waste anymore time ( for those of you who do not know my son was kidnapped by his father for 14 years} so you can understand how valuable i feel time is with my son.Every Sunday at my church i am reminded of how much i loved being a mom of little ones, and i watch some of the families with young ones and wonder if my son ever ran around like they do with their big smiles and loud laughter. Did he grow up happy? I can only hope that when we are both with God that we will have all the time in the world to spend with each other. As far as my daughter goes she has always been by my side and is my angel! She has always been my girl and i feel so blessed to have raised such an amazing smart women that she has become.
Not to long ago someone important told me that love will carry me when my strength is almost gone……i know its God’s love that keeps me going because trying to believe(let) “human” love carry you usually doesn’t work out like you think it will or want it too. So if you are reading this and you are going through something that is hard, do not rely on others rely on God. God will love us unconditionally, some of us just do Not like to talk about it or admit it. I had to find out the hard way that this is true, i gave someone everything i had, and in the end it wasn’t enough, because i was “too SICK”. A human did that to me, but God doesn’t walk away because i am sick, he is here no matter what and i have so much faith in that. I am not perfect, i wasn’t raised in a perfect home, i have done things that i am not proud of, i make mistakes everyday and i am fighting to stay alive everyday but i can rely on one thing everyday…and that is GOD!
Ok so i think i talked about almost every topic, something for everyone 😉 in closing, i just want to enjoy this summer just in case its my last(not that i want to talk or think this way)i want to walk at the park or wherever, i want to go to Donner and travel, i want to spend time with new and old friends. And do not worry if you have little kids, i can use some hanging around kid time too….just ask some of my church family….i love just being around people with good spirits…they make me feel so GREAT…even when i want to just curl up in a ball and die. So do not worry about breaking me or bugging me, i promise to always let you know how i am feeling, if i am tired or in pain, i will let you know. I can do these things alone or with others, i don’t care, i just want to feel the sun on my face and enjoy life while i am here! This summer regardless of what my body is doing to me, will be the best! I will take nothing for granted…..that’s my summer plan…what is yours? Infiniti Kari
What a question?! I say this though because lately i have been seeing a lot of ” feel sorry for me posts”
I am in no way shape or form calling anyone out or trying to make others feel horrible for voicing their opinions on their personal sites. As i really dislike when others judge me on what i say on my site. What i am trying to convey is that i really want you to think about your problem from another point of view. For example i have read people complaining about no one being their for them and so forth yet from my point of view the ones complaining have moved from their friends/ families and i know for a fact they have great families…(no family is perfect) but i personally know these two peeps i am writing about get monetary & emotional support from family all the time. So next time your feeling “‘alone or not supported” think about people like myself who really have very little and who have very little to zero monetary/ emotional support. So when i see your “‘small” problems it really hurts me how much you take your life for granted.
Life is short and maybe you don’t get that, maybe you do, either way really take a moment and ask yourself is your problem as big as you think it is?!
I sit around a lot in so much pain and discomfort which causes loads of fear and panic. I 100% know life is short…i pray most days i am able to get out of bed so that i can do things…go hang out with a friend, get groceries, walk etc but lately with all this new swelling in my cranial bones, internal bleeding etc…it has been almost impossible most days for me to just get up and shower or check emails/ FB and then when i am able to check in on what everyones doing, most of what i read is so negative…. So to you who think life is so bad right now, lets switch for the day…..
As always i appreciate all the love i receive via email/ phone/ FB etc… I know you all try to do what you can….
God Bless you all and for those of you struggling hang in there, it could always be worse…..even for me, even with all my struggle i know their are children who have my disease and if i feel how i feel i can only imagine what a helpless child feels….
Or If your feeling alone speak to our father, God does hear us…
Sometimes i get so tired of being so tired! All i want to do on weekends is get out on Sat and do something fun and spend Sun with my church family and unfortunately that did not happen this weekend. I have been so fatigued, i take a shower and then halfway through I am exhausted! So exhausted i get oit and go straight back to bed aaargg
It would be fabulous if some wonderful scientist/doctor/ patient invent an energy pill for us battling this chronic disease. Due to all of this next outing i get, i am going to go buy me some more comfy pajamas, since it seems to be all i wear these days