I really hope that people will respond to what i want to do. I want to explain to the world about our disease and how we deal with it the GOOD and the BAD stuff. So you choose either email me your story with a photo if you wish or make a video and send it to me. Tell me your story so i can make one big video about how we all live. Please talk about the meds your on now or have been on, your caregivers the good and bad times with them. Everything is important do not leave out any information that will be important to this cause. Again THANK YOU!!! ❤️
I hope everyone had a great weekend! I received a lot of mail after my last post. Many of my readers want to know a little more about my life. When was i diagnosed, any special people old and new in my life, what about immediate family, and a few other questions. So this blog will specifically answer those questions.
Honestly my life has been a bit rough even before the multiple organ ra diagnose and because i choose not to dwell on it, i do not talk a lot about it BUT because my readers have asked, I will this one time go into detail about my life before the diagnose all the way up to today. Take a seat and enjoy the walk through my life, the good & the bad…
I was born in 1974 in California. A few years later my parents divorced. I did not have a good up bringing. And quite frankly its a waste of All our time to talk about either one of them.
This is hard for me to talk about but here we go….As a young teen i found myself with no support, awful role models and soon would find myself in a horrible domestic violence situation by 18 and my son being kidnapped by his father. I am sure for you parents out there, you can imagine what i went through. He was missing for a little over 13 years. But that is a whole different story and for the purposes of this story we will only skim through this chapter as its extremely painful for me to talk about.
My daughter was then born a few years later. And what a blessing she was because less than a year later a tumor was found on own of my ovaries. The dr told me it would be a routine surgery to remove tumor but when i woke up she had performed a full hysterectomy. Although she saved my life, i was only 23 & this news was devastating. I was now in what they call surgical menopause. I would now need fo be on some form of permanent hormone therapy and also would notice a lot of menopausal symptoms.(@23)
I wanted one more child with the man of my dreams but God had other plans. And from where i sit now, it was for the best. Both my kids are all i need. They are everything to me.
After the hysterectomy i had about one good year before i began to notice pain in the upper right quadrant. I was seen by several doctors but no one seemed to know what was going on with me. My fiancee and i at the time then made a decision to move back to Reno NV, where i was hoping my family would be helpful and maybe i could see different doctors who could possibly help. Thankfully one of these things happened, i found a dr who diagnosed me with what is called NASH(non alcoholic steatosis hepatitis). This meant that if you took a piece of my liver and put it next to an alcoholic’s they would look similar. The dr had no idea on how i got this disease but said that sometimes this happens and that more than likely it was hereditary, later i would find out one of my relatives had a auto immune liver disease. In the following 6 years i would under go 13 surgeries and several thousand tests. And when you go through this kind of thing and have no support things only get harder. I now found myself after 9 years of marriage going through a divorce. I try not to lay blame on either one of us but i can say that no one helped us and I believe this had an impact on us. I was in and out of the hospital almost 70% of our relationship and sometimes people do not have the tools to go through someone in this type of hardship especially on their own. Sometimes for people throwing in the towel is easier than finding a way through it.
I would say about 6months after my husband and i parted ways i ended up in the ER one night due to internal bleeding. I had 7 tumors in my intestines and sent into back to back surgeries. A year later my liver went into failure and I was sent to Utah to undergo a surgery that forever changed my life. I was in the hospital this time for two weeks and unfortunately during the surgery the Dr cut my Vegas nerve which makes your belly do its job, therefore leaving me with gastroparesis meaning paralyzed stomach. I could now no longer eat regular foods. This absolutely bites literally!!
In the middle of all this health mess walked in someone who i believed to be amazing and who said all the right things to me. He promised to do what no one else in the past had done which was stick around no matter what my health did but 4 years later i found him walking out and his last words to hit his lips were..” Your just too sick” Honestly what in the BEEP does that mean? And why did you wait for FOUR years? Again my world came crashing down. I was devastated, it took me so long to trust him fully and for WHAT?!
I then struggled for awhile before i met someone in California who definitely changed my life. I moved to California to be closer to him and while their i was experiencing a lot of leg paralysis and other painful issues. To make a long story short….One night i fell and it was this fall that led me to this California dr who listened to me and who told me that he would test for everything until we found why i was in so much pain.
This Dr tested not once but three times and all three times it came back positive for multiple organ RA. I had no idea what RA was and the more i asked about it the more afraid i became. When the Dr starts out with we have to start chemo meds tomorrow that is scary ! Honestly all i remember of that day is asking what about my liver disease and the Dr saying to me, “you no longer have to worry about your liver issues, this RA stuff has a higher chance of killing you.” I just remember looking right through him. I was so lost and never have i felt so alone. And a date i will never forget Dec 5th 2012. I have received many crap christmas gifts before but this was the worst but i had no “giver” to blame or yell at. Nowhere to put all this blame and anger.
Here it is almost two years later and i still feel just as upset as i did on that day, the only difference is i know a lot more about RA. I have dedicated almost every waking moment to schooling myself in the topic of RA. I now know enough to confidently explain it to others but not enough to feel like i will ever be ok. This really isn’t the “i am so glad to be diagnosed with disease.”
Sometimes i wish i could just go back to just the “liver” disease. Times like that were hard but i had really had no idea of what was to come. Now i am on and off steroids. I take weekly oral chemo drugs along with some other meds and we seem to be hitting a dead end. I am now in more pain and have more fatigue than i ever knew existed. Its at times depressing and always frustrating!
I am sure you can tell that i have very little support as i said before no parent is around and i have few close friends as most of them took off after i got sick( amazed me how people can just leave when they think something is too hard) I now have walls up and only let a few chosen through it as i have learned from my bad experiences with people i have trusted. Although i have learned who my real family/ friends are and how i should be treated! I now would rather have 5 great people then 30 hurtful people around me.. But it has taken a lot of heartache and tears to get to where i am now. I am so grateful for those who are around now even if they live far away like my Rhonda❤️
I hope this answers most of your questions and as always thanks for all the love and feedback!
Today i read an article about suicide and my disease and unfortunately last month it made the news because suicide is very high. This hit me hard because my first reaction to this article is that i have a higher chance of killing myself than getting any real comfort for my pain or helping with the progression of the disease. After thinking about it for awhile i realized i am NOT a quitter but this article does still affect me. It makes me really think! tonight what has been on my mind is…am i happy? Is this life that i am living what i want? Because if the things outside my health do not make me happy i have a higher chance of not being around any more. Honestly this is a hard subject for me to even talk about. Because it makes me extremely vulnerable and i feel “naked.” Outside of my health i do NOT have much anymore. I can’t do my dream job, the one i have been going to school for. I had to quit the job i did have due to pain, tiredness and difficulty walking etc. And when you don’t work or have a place to go you’re home becomes a prison. I have to change rooms just to feel like i am going somewhere. Then there is the whole Nevada issue i have….the issue is…Nevada is NOT really for me. I am just back here because i came to be with someone. I gave up a lot, with out even thinking about it.(not because of anything bad but because i made a choice that day) But as i say this i also know that Love is NOT enough. You can’t just do things because you have a feeling…it has to be a choice, a decision that you make. And sometimes we make not so great decisions because we do it on a feeling and not a decision. When we do this, we often fall on our face because we see that it is one sided. This is just not with significant others and family this is also true with who we CHOOSE as our doctors. Do i stay with my regular dr because he has been my doctor for so long or do i jump ship into a new dr relationship and just like any relationship pray they have my best interests at heart?! So as you can see, i have a lot on my mind, as i look around tonight i see how others are OK where their lives are but i am NOT OK where mine is. I do not like to settle. I do not like to “waste” what time i have or my spoons that i may or may not have on any given day. Tonight i feel i give a lot of myself and get very little back. I feel like i pay the price for others issues and or crimes. I feel i scream and yell but no one listens especially the doctors. I am tired of suffering, more tired of suffering quietly. I want to get to the point that the only thing that sucks or is hard in my life is my health, nothing else. I also Pray that others for once put my dreams and wants a head of their own and make smart decisions for all concerned.
I remember a few years back someone gave me this saying and I find it helpful to me in this moment and it goes like this…..”If i only knew my choices however small and seemingly insignificant were taking me away from you, i would turn and run to you.” ” If i only knew my days were coming to an end i would number them carefully one by one and ask God to help me make the best use of my time Because the days are far to fleeting
Don’t allow regrets of “if i only knew” to be the final marker of your life. Be Swift to love, hurry to be kind, take time to make others feel special. Give hugs and kisses and may I love you be often on your life. As tomorrow does not always come”…..-Lance Wubbles
Things have not been great. I have this knee that is a nightmare to me. It doesnt matter what i do or use for it, its always angry. And to make it worse i don’t get the help i need. I cant do it all on my own although I’m forced 88% of the time to do so. Awhile back a lady wrote to me asking about care taking and such, so this week i am going to do write on that very topic…it amazes me how much I DO for people even though i am running on empty most days or on a few “spoons” but when i call out in need…. I always have this fear i’ll be on my own…. I don’t believe doctors or loved ones really know how to deal with us “spooners” or people with chronic issues. When taking care of us it DOES mean putting everything else aside sometimes. I am hoping by telling my personal story it will OPEN others eyes. I have written about this before but this week i am going to not only do research on the topic but i will dig into my own personal life( which will be great insight, as recently someone who was in the caregiver position in my life recently wrote me a letter explaining his side the fears and the frustration, i will share this with everything else i discuss here) so stay tuned and please leave feedback and your personal journey…