Your not Alone

This is dedicated to you girl, the one crying in the shower, the one crying curled up in the bed, the one crying and hiding in the closet, the one contemplating suicide Yes you, do not be ashamed, do not feel alone. Dry your eyes and listen real close. You are NOT alone. Yes, some of us Spoonies are lucky, they have most of what they need, a pretty great home life (nothing is perfect), a compassionate loving partner. Someone who holds their hand when you tremble at the Dr’s, one who is first to wipe the tears of fear away, one is who their rock. And they might even have great friends, who always have time to chat when they  are at their wits end. . And how about family, I am sure some have family who are involved. Ones who are there at a moment’s notice and have their best interest at heart for the most part.  A mom or dad to call after hearing their blood work, MRI results etc.

Did I just describe what you are missing, what you need? Do you find yourself envious of those Spoonies who seem to have it all BUT good health of course?  Does it make you cry to see all the love that surrounds them? All the people who are there to hold their hand during some of the worst times? Do you get tired of all the pictures with the loving hubby/boyfriend gently kissing their cheek while the world is burning behind them? And they even seem to have a helpful (not perfect) health team. They just happen to have gotten the Dr who leaves his ego at home.

Well please know YOU ARE NOT alone. It sounds like you and I are a lot alike. I live most days in bed crying/screaming from the pain and wonder if someone will ever come to my rescue. I live by time tables, to take meds, to spend time with people. I was diagnosed with all these horrible diseases then got to to spin the wheel of LIFE and it gave me a bunch of things in disguise… loneliness, sadness, and whole bunch of heartache. I say disguise because when I first heard what I would have to help me get through some of this, it sounded good. It sounded like what I wrote above, someone to take care of me through thick and thin, some family members to help out, hopefully some great Dr’s and most importantly someone to LOVE me even though they were about to watch me go through some really hard stuff and possibly die at a young age.  But lets just say luck is something I do not have much of.  I have parents who turned their back for their own selfish reasons. Friends who “can’t deal with my health.” Or people who just can’t deal PERIOD so they take it out on me. This is ONE of my personal favorites because my body takes everything OUT on me so when people do it…its AWESOME.NOT!!! It gets so old loving people who could care less if you died today or tomorrow.  If only some people could trade places with us RIGHT??? I know you feel this way sometimes too, I read part of your story.  It sucks being your bodies and humans DOORMAT.

Point is I was WRONG about so many things, truth is sometimes dying would be easier than going through all we have too. **DISCLAIMER I AM NOT GOING TO KILL MYSELF SO DON’T FREAK OUT**….My health, just like yours is kicking my ass, telling me what to do and taking everything I own/work hard for. Shit, I can’t even take a shower without my hair falling to the floor or my hands being to exhausted to wash my body.  And then I try to show my face outside of bed and pain and all I feel is everyone’s boots on my back. Pushing me down to the ground as to say, you ain’t shit and because you’re sick, I can do and treat you however I want. I waste so much time fighting everything in my life, as I am sure you can relate. It is like we never get a break from anything…

I get to spend 15min every month talking to the Dr while he stares off into space and then nods and says, “see you next month, now go take your piss test.” Or the other one who I believe is a great Dr but who has way too many patients so I get to sit for hours to see her for maybe 10min and we never get anything accomplished. I know it’s not nice to say, but if this disease could just touch their lives for ONE DAMN second maybe they could see us as a person suffering and literally sometimes begging them to help us instead of dollar signs…( and i know they can’t fix us but they can LISTEN and try to help)

So girl, I KNOW how you feel and I am here for YOU… And I know that it seems the easier way out is to finish what our disease started but maybe just maybe, we can help each other out.  It is kind of funny when I think about it, maybe our diseases can hang out for a while and give us a BREAK so we can do something fun and pretend that this life is worth living. In the meantime, try to find someone who WILL listen, maybe you need to just SPEAK up and if that does nothing. Move on….moving on will hurt…BUT you are hurting now! There is ZERO cure for us, why should we waste it on people who take us for granted, who treat us like a number (some Dr’s), some people have no idea how special we really are. I hope you know  just how special we SPOONIES are! Keep living, keep fighting, God did NOT put us on this earth for NOTHING ….He had a much BIGBER PLAN FOR US. Remember when one door closes , two more open….I believe that with everything SPOON I have today…Hugs

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Fear and the new “normal”

IMG_1190When Fear cripples you, it tears apart your hope. Hope that you will be ok no matter what the day brings your way. Hope that someday you may feel like a real person again. Hope that life will go on. Hope that someone will listen to you and tell you that everything will be OK. Hope that tomorrow will come and go. Hope that you will not be alone through the darkness.

This last month I have been waiting for the Specialty pharmacy to drop off my meds. The meds that may or may not help fight the war inside my body. Then yesterday I saw the truck pull up at the house. I thought to myself if I don’t answer the door then the med will never make it into the house. If somehow the man carrying the over sized cooling box will trip and the needles with the meds in it will fall out, break and soak into the concrete.

Its funny looking back on it how ridiculous my mind was thinking but truth is I am petrified. This drug is another one of those…take it and SEE what it does…Oh by the way you have a HUGE chance of getting lymphoma and other cancers, your immune will NOT exist because you have to also do your chemo meds on top of this drug, its best to wear masks and gloves to keep the germs away. A simple sneeze from your friend may cause you pneumonia. Oh and my favorite….Sepsis does occasionally happen with your disease and this drug…so you could DIE within 24 hours after first injection…. I COULD GO ON AND ON….   And then I jump on the internet and read a thousand cases of all the above LITERALLY!!!  I honestly would not be as scared if I did not fall into these categories regularly. For example:  When my liver was dying two(2) Dr’s told me that I had 1 in a trillion chances of the shunt they placed in my liver to get infected, cause serious issues and then need to be removed.  Guess who had their shunt removed less than a week later??? Yep you guessed it ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Or another favorite…you have some cysts on your ovaries, we will go in and remove them and you will feel better. Before surgery please sign this form stating that the hospital and Dr are not liable if something goes awry and we need to do emergency surgery. I remember asking the Dr what the chances were of something going wrong and she said it is extremely RARE, in fact she had never seen it in her years of practice.  Guess who had a FULL HYSTERECTOMY at the age of 23???? Yep you guessed it again ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  And to top it off I am allergic to a million meds which A. am I allergic to this one and B. make it hard for Dr’s to save my butt once something does go wrong.  I am barely getting used to this chemo drug that makes my life interesting for lack of a better word.  Its funny how after a while you start getting used to being sick, vomiting, feeling fevers, feeling cold, shaking, being miserable, tired, and in more pain that I could ever imagine being in. ugg

So do you all see now why I just want to RUN??!! Run and never look back.  I feel like I should just say my goodbyes because chances are I am screwed if I inject this drug.  And yes for all you OPTOMISTIC people out there….i have thought about the other side of this…like maybe for once I will be on the other side of things like maybe this drug will join forces with the chemo meds and fight in the war inside my body. I have tried to be more positive about this but as you can see I have a lot of history with bad health stuff.  Either way I have to make a decision soon. So for now I will keep doing my weekly chemo meds, I will enjoy a Halloween party and then as long as we have all the ducks in a row…NOV 2 will be the day I take new mix.  I just need to get some things in order and some other people on board.

Who would have known how exciting my life would be?! You know awhile back an old friend of mine bought me a book titled, “He walks with me” and to be honest with you all, I think it has been one of the reasons I have made it as far as I have. And then I think to myself if its my time to die in a few weeks, then its time. And on the other side of it, if it makes me sick, then God will walk me through that too. Either way I am covered right?!  Kind of reminds me of a friend who once told me not to worry so much because where we were going, there will be no more pain and things were going to be good!  She died a few months later of cancer. I was so angry because she left me, I felt stronger with her sick butt beside me.  I pray a lot and I still have days where I feel so lost, not about where I am going but how it is happening. This shit is painful, throwing up and internal bleeding is NOT FUN. Constant leg and back pain hurts like hell. Not being able to sleep is terrible and all these gosh dang meds that we are forced to try/take have many bad side effects are insane!! This is not a fun way die. And its lonely. No one really knows how to deal or be like around you, you’re misunderstood and medicine is not perfect.  And Dreams get crushed. I have watched almost everything I have worked so hard for disappear. Once my dad told me, no one will really love you as sick as you are. Now I find myself living the way they want to live, I live others’ lives; my dreams/wants are no longer a priority.  Its strange how quickly you just kind of settle into a role that someone else wrote for you. You’re now sick, you can’t work much, you must live here, eat this, take this medicine, do this therapy, ask for others to help with money, oh and if you want something, forget about it because it’s not something they want. I am an A personality so being under so much of others control drives me crazy. My brain wants to finish my Bachelors in Criminal Justice, buy a small house; you know those trailer ones….love those! I want a jet ski again. I want to hike and run till I can’t breathe. I want to travel and see the world. I want my own Harley again. I want my long hair again. I want to sleep all night long. I want zero meds in my body. I want a love that never ends, I want a HEALTHY body. I WANT MY LIFE BACK!!!! But my body wants NOTHING to do with those things and I lack people in my life to help me accomplish some of those things.

This is my new normal now. And don’t get me wrong, I am getting used to this new “normal” but I still feel so empty. I had plans before all this went down. Nothing was perfect but It was close.  Recently I received a letter where someone said, “ you have the biggest stamp on my heart.” This statement among others really touched my heart because through all this sickness I have forgot who I am. This person knows exactly who I am and no matter what time I have wants me to never forget it. I want to take a moment here and tell all you *spoonies NEVER push people away who love you unconditionally no matter how scared you are. Pushing away the ones who belong at your side only makes you lonely in times of need. Keep the ones you love close. 😉

Even though this is now my new scary frightening normal it does not mean that I need to forget who I AM. Even if I have lost a lot along the way.

The joy of the Lord is your strength-Nehemiah 8:10

Support us ALL

This week I wanted to take a break from the normal everyday tell all…Instead I want to talk about a few things that have been on my mind lately.

The first thing I want to talk about is all the chatter in regards to Opioid abuse.  Today I read this article

http://www.painnewsnetwork.org/stories/2015/10/12/patients-predict-more-drug-abuse-under-cdc-guidelines

Now as a chronic pain patient myself, I have to agree with many of the patients. If you take our pain meds, where are we to turn? Who says we don’t already do physical therapy, exercise and non-pain techniques? In my case and many others, pain meds help us  to DO THINGS. What I think some  people( CDC, Dr’s and or people who have never experienced chronic pain) do not understand is that in many cases pain drugs help with the pain so we can do some of the “normal” things we used to do BEFORE the pain.  We don’t do it to get high. IN FACT it is a proven fact that chronic pain people never experience the same high as drug abusers..WHY you ask??? Because we have PAIN and that is where the pain meds go directly.

I also read today on another site that some patients are afraid they will have to go to street drugs if the CDC reduces the amount of pain meds a chronic patient can get. HUH this kind of reminds me of GUN control. PUTTING laws on LAW ABIDING people does NOT stop people from getting what they want. Meaning there will always be drug abusers no matter how many rules you put on chronic pain patients. Have we not been fighting the Drug war since the 80’s? LOL

I know this sounds awful but when I read about stuff like this, I wonder what would happen if people who are trying to make these laws all of a sudden got sick and I mean sick like ME. And then because of their bullshit rules/laws they couldn’t get any pain control….then WHAT?????  I really dislike people who know NOTHING about what chronic pain patient’s go through and then make these types of decisions.   Are you then going to be responsible for all the withdrawal issues, suicides and people running to the streets to get some relief no matter the cost?

We have to stick together and SPEAK UP so people know what our lives are like. We are not abusers, do NOT treat us or LABEL us as such!!

 

The second thing I want to talk about is a very delicate issue and I am by no means belittling cancer as cancer has also touched my life. Cancer sucks! However I want to get Rheumatoid Arthritis (all the different kinds) out there in the public more. So many people do not know about or understand RA, its complications, diagnosis etc. I find this sad because 1.5 million people have some form of RA. Ra has zero cures.  I personally believe knowledge is power. I am speaking out about this because many people support “pink” but rarely the blue/purple.  Everyone owns something with the pink ribbon. Even the NFL sports pink stuff during the month of October. It is like the rest of us dealing with other diseases are the red headed child that no one wants to talk about and or understands. Or maybe people are just worried we will be more important that cancer?  I don’t know what the fear is but I am DONE being ignored and misunderstood. All of us who are touched by sickness should stand up; there should not be a divider between any diseases. Disease sucks. Cancer sucks, RA sucks, MS sucks, Heart Disease sucks, Suicide sucks, Diabetes sucks and so does all the other diseases that touch our lives. Cancer is not the only killer out of the bunch.  I believe we are all ONE.  Please have compassion and support us ALL.

I kick ass

I hope everyone had a great week! 

I knew last week that this week would be busy & exhausting, so i made some very difficult choices. Choices that affected my health negativetly but worth it to ME. 

Without really talking to anybody I decided to skip my chemo meds last week. It amazes me how not even 24 hours after missing my dose,how my disease went crazy.  It’s like my disease was just waiting for that opportunity to to act like it was reliving it’s teens. Lol I can’t even describe the amount of pain I was in this week due to missing my meds. It also angers me that poison does actually help me a little bit. To be truthful I can’t wait to take my dose this week in a sick twisted kind of way. It’s like on a pain scale of 1 to 10 my body is usually at a 10 on chemo meds and other meds but without the chemo meds my pain is at a 20. Just talking about this is frustrating I don’t want poisons in my body my body is making enough poisons yet I’m in so much pain right now that I am reminded that I do need my other poisons..I sound crazy! 

Anyways I thought I would tell you about my crazy week which in turn would explain why I decided to skip a week of meds. 

Monday, October 5 ended up being a very emotional day because three weeks ago I received an email from a board of doctors and a pharmaceutical company. They were interested in speaking with me about one of my diseases that they are:

A. trying to find a cure for 

B. Trying to get a better understanding of the disease and opinions from actual real patients with the disease

I took two days reading over the legal aspect of it and then took another day pondering the idea of actually opening up to complete strangers about what I call the beginning of my health issue that took so much from me. To me this is my website I can talk about what I want to talk about but this board of 13 strangers was going to have complete control over where the conversation was going to go and that was what was making me nervous I don’t like giving up control when it has to do with my health. But with that said, I decided to meet with the board because at the end of the day my purpose is to get the word out and to maybe help someone else’s life through my story. The conversation started out basic, State your name age marital status and then it got into your health conditions and then right when I thought they were almost done, they brought out the big guns. The questions turned extremely personal and I lost it. All of a sudden I had to answer questions that nobody really asks. I completely fell apart. But in the end I believe that these doctors & the pharmaceutical company have real raw answers. For once they heard real life patients, they heard me. They now have real information not just something they read out of a book. I also took this opportunity to tell the doctors to please never just treat out of a book that they read or think that other patients will fit in the same box. All of us are different, we all feel things differently and diseases act differently in different bodies.I can’t tell you how good it felt to say that to a room full of people that had their eyes & ears on me. So many doctors now days do  not listen to their patients and they treat only how they think we need to be treated. So I pray they really took what I said to heart and if they do, I believe this project they’re working on will go far. 

I also made it out to a friends house for a little while and also got to talk to my best friend Rhonda via telephone which was awesome! Wow Just looking back Monday exhausted me!!

Tuesday I got up and walked the marina which is 2 miles and also visited with my homeless friend Bill. Bill is really awesome he always has a way of reminding me to keep going on my journey. He might have very little to call his own but he has so much strength in his words. Very grateful that God brought him into my life. We could all learn from someone like him and the trials he is facing. Today was also Brian’s birthday and I had already told my body that whether I was exhausted or not we were going to dinner with him. And that’s exactly what we did we ended up having dinner at Mel’s diner. And that’ll be the last time we go to Mel’s diner this is the second visit where we have had crappy service and horrible food. Never again!!! After dinner we came home and it was then I decided that I was not going to do my Tuesday chemo meds and that I was going to be skipping them until the following week. About an hour later I was in bed and the pain escalated from a five to a ten. Now some of you would have said forget it I’m taking them just due to pain, but when I make a decision I make a decision. I wanted to do this for several reasons I want to spend time with Brian and set of being that yucky sick chemo feeling and I wanted to have a little bit of energy in order to do the other things I had planned to do this week. I can tell you from experience that planning anything and fighting six diseases is impossible!! it gets really old really quickly! I can’t stop what my diseases are doing to my body but I can stop with the drugs do to my body so my only option is to skip a week of chemo meds and pray I get a little bit of a break on some symptoms. But it’s a trade-off I might get a little bit of energy jump but my pain level will jump also. It was something I was going to do. 

Wednesday I woke up early for once and I just felt like I had eaten A pound of sugar and I just felt I don’t want to say energized but I felt like I had some type of energy that I normally don’t have. So I decided to work on the yard. I miss being outside I cannot tell you how much I live in my bed so it felt so good to have the sun on my face. After about two hours my body very quickly reminded me hey you’re sick get back to bed. I went back to bed and one of my good friends Leane and Russ brought me and my family dinner. What a lifesaver this family is. This is one of the many things God has blessed me with good friends. 

Thursday I woke up again early but with severe back pain I don’t even think there is a number that explained this back pain. I stayed in bed most of the day except to drop off some homemade food to Bill. 

Friday I woke up and went back to the marina and walked the 2 miles. Now just because I walked it doesn’t mean it felt good it just meant that the weather was so beautiful that I had to be out in it. I then spent the rest of the day relaxing because I had made plans a week ago to do the bikes for badges charity. Now if you do not know about this charity you should read about it. It’s a charity that helps fallen officers and their families. Charity work is very important and dear to my heart so preserving my energy and skipping medications was completely worth it.

Saturday, October 10 the day I knew I had to get up at 6:30 AM. I got up promptly I felt energized& i felt ready to be a part of an amazing thing. I pushed my pain aside & enjoyed the ride! And gorgeous weather!

Bikes for badges was awesome I could go on and on and on. I want to encourage everyone to please be a part of charities like this. I don’t care who you are or what situation you been in positive or negative cops are there for reason, to serve and protect. Be a part of the solution not part of the problem! Here are a few photos of the 2015 bikes for badges in Nevada.

   
   
Today is Sunday, October 11 and let me tell you I am rundown. However I did make it to work this morning and then back home to bed where I am now. My spine legs and hands are swollen and painful to the touch. I am now paying for missing my drugs and allowing my disease to be the boss. And even though I want to punch a wall because I feel like shit I know I did a lot this week and I’m very grateful for the things I did get to do even though now my body is torturing me. Sometimes I just want to quit feeling like a pill bottle I want to run away I want to stop feeling this pain but the truth is this is the new life I live. Unfortunately my body is a pill bottle, I can’t run away and pain is a part of my diseases. But I’m alive and I’m living this life the best damn way I know how to and that something to be proud of, because I know I kick ass at it! 

Hope everyone has a great week and I will blog again as soon as I feel little bit better, because this shit hurts💋

****a question for the guys****  

What He sees

 

           I have been trying to get this post together for awhile…it is hard for loved ones to speak out about what they deal with. I had Brian make a list of what he thinks about or what he sees as the hardships of taking care of someone with a chronic disease. I pray more loved ones add to this list. It is important for good communication in any relationship even more so with someone who is sick. I say this because sometimes we have more needs than the average person. Emotions are definitely more heightened and as i said before we have special needs as do those of you who take care of us. It takes a special someone to have the patience, compassion, love and dedication to take care of us Spoonies. I thank all of you from the bottom of my heart. It is NOT an easy task. I talk about this very topic on my page titled “all about me.” Many times people say than take care of us,yet fall short for whatever reason or excuse they might have.  I think using our health as a reason to bolt is just a scapegoat. Although it was a hard thing for me to go through, thankfully i am the kind of woman that bounces back from pretty much anything. I guess when your parents turn their backs, you learn to move on fairly fast when others do it too. It still sucks though and even more so when i read the statistics on divorce and or people leaving loved ones who are chronically or terminally sick. It outrages me. It completely disgusts me. But i believe the more we talk about it and share our stories, the more people will mean what they say when they say it and stay. So i am very grateful to those of who not only talk the talk but walk the walk! God Bless youKiss mark
*****I believe that these are not in any order*****
1. The struggle of watching your loved ones in pain and not being able to do anything but be there for them
2. The time you spend doing nothing just to give comfort as they sleep beside you or on your lap on the couch
3. Not knowing when the pain is going to consume the day and ruin all the plans made together to do something with each other.
4. Massaging your partners sore spots for as long as you can trying to help them through the pain. (I’ve fallen asleep so many times at night while doing this)
5. Knowing that when they snap at you its really the pain they are angry with and not just because you asked how they are feeling
6. When you lay down with your loved one and your hand automatically finds that one spot that hurts and out of habit start to massage it.
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Even in his sleep he holds my hand 😉
I love this quote:

“Watching someone you love… die? There are no words for how broken that makes a person. It’s like waking up from a bad dream only to find out that it’s your reality, it’s like watching sunlight fade from the sky, like watching death suck the one you love dry, and being powerless to stop it. You may as well try to stop the waves from rolling in, or the sun from rising.In the end, the waves will roll, the sun will set, and death will come. The only thing you have a choice in? How you deal with it…when it does.”

― Rachel Van DykenToxic

 

Never Give up

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Hello Everyone!!
 I hope everyone had a great week unfortunately for me I spent a lot of time in bed. I am sure many of you are thinking to yourself..what’s new Kari..LOL 😉
My body has really been kicking my butt and then with the addition of the chemo med’s and steroids, I have just been unable to get out of bed which sucks!
But I wanted to keep everyone updated as to what’s going on so let’s go back to last week where I left off!
Last Thursday…..September 24th,which was  my daughter’s 21st birthday. It amazes me how time flies by. I did for her what I have been doing for her every year since her first birthday; I filled her room with balloons and then I went right back to bed. It’s frustrating that I can’t do more than that but I don’t make the rules anymore my six diseases decide what I could to do. Just writing this makes me want to cry. How depressing this life of mine has become. It is time for me to scream at the top of my lungs!! Because there is NOTHING more i can do. Shit, i don’t have a spoon left to scream…DAMMIT
Friday I got up and walked the dog around the neighborhood for about 15 minutes then I went to do crafts at Shannon’s.  I was there for about 2 1/2 hours then I went home and went back to bed until Saturday.
Saturday we got up and did some volunteer work for the  hog chapter and then we rode to Virginia City and back and then guess what we did…OH i think YOU know…..Back to bed! AARGG
Sunday I woke up with my skin very itchy which is usually due to either my liver disease or my RA. Either way it sucks to itch all over. There is ZERO cream to take this itch away….. can i spare a spoon to scream yet?????   Heck NO!! I did however manage to make it to work which is great. I work with amazing people and it helps keep my mind off dying and other things that cross your mind when you’re dealing with chronic terminal disease. I am very grateful for a company kind enough to deal with me and my damn six diseases!
Monday I stayed in bed all day because I knew I had to work a few hours in the evening. I went to work for three hours and then went back to bed.  Even though i am in Bed now, i did it, i worked a few hours these last few days and i feel exhausted but at the same time FREE!! I was the boss of my body for 5 hours this week WOOHOOO
Tuesday I was feeling the pain! My body was paying me back for the 5 hours i apparently stole from it.  I was so sick I missed the hog meeting and i  didn’t keep much food down. I did however manage to take my chemo meds ;-(
Wednesday I was feeling worse than Tuesday so I stayed in bed where my vision was very blurry, my belly was hurting, my spine was screaming and my hands were burning on fire. Are you kidding me??? You already punished me yesterday and now you want today too? You are so SELFISH body!!!
Thursday October 1st… I was supposed to go on a hog Ride and work for three hours but could not do either because guess what I’m still in bed.
Sometimes you just have to take these punches that these diseases give to you! You don’t have a choice but to do what your body wants you to do….I really just want to give up when i have weeks like this.  It is so hard to keep a positive outlook when all you see is the same damn 4 walls all the time. I have to continuously remind myself to live Second to Second.
Friday I stole some of the cats spoons so that i could go to Walmart and get some fruit. I was gone maybe 30min and back to bed i went. This bed is really getting old! Especially now that we are down to a blowup bed since my health accident on our mattress. Blowup beds are ok for awhile but at some point i need a new mattress, my body needs one!
Yesterday which was Saturday i stayed in bed until i went over to a friends BBQ. I tried to stay as long as i could because this was the first time i had been out in awhile besides the Walmart visit. Let me tell you how great it is to talk to HUMANS instead of cats and dogs….. 😉
Today as you all know is SUNDAY. I actually did a lot today, i made it to church and then to work. So yes you guessed it tomorrow i will be in bed all day and probably Tuesday too…because we all know what Tuesday brings…little bastards chemo meds..YUCK…..
I just want to emphasize, that even through all your struggles whatever they are,it is OK to scream and cry BUT you can never give up…     TRUST ME, i know what it is like, i want to give up a million times a week, but i don’t. Try to step out of your situation for just a second. Take a breathe and exhale….it is going to be ok, it just might not be the “ok” you want. Have Hope and faith. Remember God doesn’t give us more than we can handle and we never have to go ALONE on this journey…he is always by your side.  My reminder, my second away from my constant pain and misery this week came from a little princess’s smile just this morning!  It is the simplest things in life that have SO MUCH MEANING!!! Have a great week, treat others with kindness and use your spoons wisely!