Trying to keep the hope…

This weekend has been one of the hardest weekends i have ever been through. Taking more Chemo meds than usual was AWFUL. At times i thought i was going to die. Between the pain, the panic attacks, headaches, the all over flu feeling and the frustration of it all it was terrible. I just felt so awful and what stinks is the fact that i get to do this every Friday now(this higher dose). And to tell you the truth i just want to run away. I want to hide. I know this all sounds crazy because we all know i can’t hide from my disease but i WANT to!!!

Today i went to the store to get some meds and while i was there i watched all these families holiday shopping, laughing and drinking their Starbucks and i couldn’t help feel even more depressed than before. How can all of you be so damn happy when i am fighting EVERYDAY to stay alive. WHY do you get to enjoy today? Why do you have loved ones around? WHY WHY WHY??? Not that i wish this disease upon anyone, I just HOPE they know what they have, i hope they DO NOT take this day for granted. I know i may sound selfish or mean but this is how i feel and if i do not say what i feel, it will fester inside me. I hate this disease, yes i said it I HATE this disease and YES it makes me sad and mad. It is a miserable disease..MY OWN CELLS are killing me! My own body is KILLING me. I can’t get away from this! I WANT a happy holiday with friends and loved ones with OUT MEDS, without bed-rest, with out this damn disease!!!

I can’t tell you all how much i cry and pray for this all to go away. What really makes me mad on days like today when i am frustrated, is that i told people years ago something was wrong with me but each time they would blame it on another health issue i have. This used to and still does upset me because i feel if people would have listened to me earlier we could have started treatment much earlier. As it is now my numbers are at a CRITICAL level as the Dr says and i blame other Dr’s here in Nevada for NOT listening and for Tim my support person at the time not taking me more seriously and really putting up a fight for me. It is tough when we KNOW our bodies and we know that something is wrong but no one is listening especially ER Dr’s, the love to treat and street.
I just feel like i am losing all Hope. There is no cure for me, there is only Yucky poison meds that make me sicker and a shortened life.
Trust me i try to be positive but when i live 80% of my life in a bed and 100% of my time on meds it is tough to be cheerful, happy and positive and still think this there is a reason for everything. This is a hard life and i know everyone has their own personal hardships but mine is physical and there is no OUT. I will die with this disease.

I pray that while you read this post of mine today that you hold close everything you love and that you take little or nothing for granted because it can be gone in a moment! As ususal i am grateful for all the prayers and love sent my way! If you need to contact me please do so at ninersgurl@hotmail.com I will get back to you as soon as i can! Infiniti love

Happy Thanksgiving weekend!

I hope that you all have a wonderful Thanksgiving weekend. I am doing my best to keep everyone updated although lately it has been rough. Here is the latest on my health and all that…… Yesterday we finally got confirmation on what we already knew….unfortunately my original Dr was correct on his diagnosis.It is almost funny how when you have more than one Dr on your case, they kinda have this “i am better than you” attitude and then fight back and forth on who is going to be in control of the treatments etc. Meanwhile i am suffering and they are leaving me hanging while they battle it out. I wonder if they would be what i call wasting time if it was one of their family members battling this crippling disease? Anyways, its just been one of those months where i want to hide away and disappear into the night. I am so tired of meds, tired of this disease that seems to be taking all i love from me. My entire life has changed with a blink of an eye and it has been a very scary ride…like a scary roller coaster that has ZERO end. It has been almost 2 years since i have been diagnosed and i am honestly still trying to find a way to be ok with it, be ok with a lesser life, a life run on meds every few hours, a life of being bed ridden, a life not knowing how long i will be walking, holding things etc. Its hard to admit to myself that this is my life now. Sometimes i tell myself, you will make these plans and you will do them, then the day of the plans happens, and i find myself so sick and in so much pain that i cant even move. This is what depresses me! I can’t plan anything anymore and it sucks! So much of this disease is scary and frightening. My Dr worries me when he says no one that he has seen has the high numbers i have, in fact he calls them critical high. Critical high, what the hell does that mean??? I hear Death soon, no hope, lots of poison meds, pain, destruction etc. I am sometimes so afraid i pray for God to just take me now because i do NOT feel strong enough to keep going.
With all that said due to my critical numbers we will be doubling the meds starting this Friday. I am completely terrified and scared about not only what my disease will do but what the effects of doubling these poison meds will do to my body. Please put me in your prayers and as always i love hearing back from my readers and getting all your love! Remember life is short…spend your time loving and forgiving, nothing is worth being angry or hating UNLESS of course you want what my body is fighting 🙂

Great Website I would like to share
http://www.huffingtonpost.com/lottie-v-ryan/living-with-chronic-illness_b_5878410.html

Church Revival Time

Hey You, yes i am talking to YOU, please do not just pass over this post just because you are not religious and or do not believe what i believe, you can still take away something from my message. If you type in Google, the word Revival it will come up with this definition, ‘ an improvement in the condition or strength of something.” So what i personally take from this word is a Revival is taking something i already do and or believe in and essentially renewing my attention on it. (if that makes any sense to you ;-)) And honestly i can say that on previous occasions and at other churches i have not gone because number 1 my pride and number 2, i do not need someone jumping around the stage telling me what i should and should not be doing(maybe this fits into the pride category too idk) Anyways i just did not want to partake. I look back now(that was about 6 years ago) and i can clearly see that the real reason i did not go was because i knew i would feel shame because i knew what i was doing outside of church and from what i had seen on television, i could tell it could be very emotional and maybe it would just be too close for comfort for me.
Fast Forward…to last October when the Ruby Family touched my heart and i followed them into SVBC. It took just a little over a few months of being there and i went to my first revival at a “sister” church. I was so moved and had such a great experience that when i saw my own church family, SVBC was going to be doing a Revival i was filled with so much joy and here is why…
Sierra View Baptist Church is not just a church, this place is like home for me, this group of people are family, i feel safe, i feel comfort, i feel something i have never had growing up and that is faith and grace. So with all that said, tonight was the first night of our 3 evening Revival and the message was powerful! We all lose sight of things we believe in at one point in our lives and or we give up on the things we want in life. This health has tested me over & over again but i still stand strong against this fight. Somedays i feel weak and small but i do not give up and more importantly i don’t blame god! Life is short, please keep renewing your faith & grace! There is A purpose for all we go through❤️

Please help with awareness…

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!!! ❤️

The long road to where i am..

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!

Sometimes LOVE is NOT enough❤️

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

What to look forward to this week…

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…

Longest week ever..

What a week it has been! For everyone who has been worried about my hospital visit and Aryzona’s car wreck, this post is for you!

So because i am exhausted here is the readers digest of the last 7 days! Last Sunday, i was having so much pain that my pain meds were not doing a thing, so i HAD to go to the Hospital. I had no choice and good thing i did, i was admitted. They put me on essentially the same meds i take at home but higher doses and via an IV instead of oral meds/patches. Even at that, it took me over 4 hours to even begin to relax……..AND THEN my cell phone rang….on the other end was my panicked daughter, she had just been in an automobile accident. Even in my drugged can’t get out of hospital state, i was in a panic, i wanted to rip my IV out and run to her and honestly hurt the person that had hit her. Outside of her having some tumor issue on her leg when she was 14, i had never heard her so afraid and or in so much pain. As a mom i just wanted to help but I COULD NOT. So i started dialing numbers on my phone which was quite a challenge, as my vision from the meds was blurry and my heart was racing…who would answer their phone at 3am??? Even Brian was asleep unaware of the accident, as my daughter had tried to call him first, knowing i was in the hospital.
Thankfully after dialing 7 numbers a new friend picked up the call. God Bless this woman!!! She jumped to her feet and went to be that MOM that my daughter needed. She helped her get her things, write her statements, talk to cops etc and then took her to her house and took care of her. If that wasn’t enough she also took my daughter to the hospital(same hospital i was in, which was so hard for me, i knew my daughter was 2 floors below me and i still couldn’t see for myself that she was alive and ok), visited with me and then went home and took care of her own family, then picked up my daughter from the hospital and came over to our house to take care of me once i was released from the hospital. LeAne you are amazing! Both Brian, Zoe and i are so blessed to have you in our lives to help! I will put up the car wreck photos soon,when you see these photos and then know your child was in this car, its so heartbreaking. I am glad she is still with us and that God did not call her home yet.

Thursday and Friday was healing days for daughter and today although she still hurts and is covered in bruises, she is HERE, i just talked to her. It is strange when you see someone in a different light after something horrible happens. Last week i was ticked she didn’t do her dishes today i am glad she is alive…still not doing her dishes 😉 That was a close call, we will know more this week from the insurance company. As long as the car gets paid and all her medical bills get paid, we are GOOD!!

So onto my health drama….at the hospital they found out my kidneys are still bleeding SHOCKER
And that now my liver wants to join in on the fun….so no wonder i am hurting more than usual….other organs want in on the fun……I see the special specialist in October so we will see what he has to say…i am guessing i will be either doing two forms of chemo meds or chemo meds plus a biologic. Biologics can be just as bad as some of those chemo drugs but it is what it is……
Brian and i wanted to escape from all the crazy so we packed up the motorcycle and went to Burney falls (which is Stunning) Saturday, then stayed in our tent at The Hat Creek Hereford Ranch about 30 miles from Burney Falls which may i say was awesome! This Ranch is a HIDDEN Gem! 3 fires had just been through the area on August 3rd and some how the fire went around this ranch. As you turn down Doty lane to drive down to this place, you can see where a gas station/dinner stood just weeks ago. All you see now is ash and burnt items. That’s IT! and then you keep driving and the road opens up to this BEAUTIFUL Ranch with Green grass, children playing, fishing…I personally took it as, bad destructive things happen but there is always beauty if you keep your eyes on the prize. Life may not be fun, positive or beautiful all the time but yesterday i was reminded to not take for granted the times that are positive, fun etc. ! Up in that area of California where we were, some people are with out homes, with out their keepsakes, i am writing a blog from my living room right now and that is a positive thing. I may be in pain, i may feel like the world is coming to an end but i have a home. Sometimes we have to look at ANYTHING and EVERYTHING that is positive. When you are sick, sometimes that is hard but our little weekend trip really reminded me of how fast more things can go bad.
So today as we packed up our tent, put on my new pain meds, and had coffee i thought about my life. I thought about where my life is heading and the hard choices coming in October and all that comes with that. And then i prayed…. i asked NOTHING of God, instead i thanked him for this little haven, for this time i had JUST with Brian, for a even though i feel like crap,i got to camp this weekend and mark off one of my destinations off my bucket list, for reminding me that even through the black(remains of a fire) there is life and light ahead(this beautiful Ranch), for my daughter to still be here with us all, for great church family who reached out to us during this last hard week(especially LeAne, who went over and beyond), For the few REAL friends i have, for Tyrone Wells Music that soothes my soul and just a general thanks for all the things in my life that i see positive or negative, because lets face it, together the good and the bad are all a part of what makes me ME.
I realized after praying that i have missed two weeks of church one due to me being in hospital, the other missed day,today, as we were on the road home but We weren’t alone on the open road, God rode along with us. We are all home now…and you know what….. I am so glad this week is over….