You do NOT wear our shoes

I hope everyone has had either a really great February or at least a semi-awesome one. As I stated last month I am not going to do my daily blogging  because it can  really be  depressing that way so I’m just going to give you my February highlights;

 

I’ve been able to make it to work on the few days that I have been scheduled which has been nice. I even had energy to clean my baby..IMG_7767

I think it really stinks that The meds that we thought were giving me a little bit of lets call it “help”have stopped. (enter sad face)

So far have only been to the hospital once this month and  to three doctor appointments. The Hospital visit was actually a good one. The doctor was very caring and actually helped me out. My three Dr appts were OK.

This month has been I’ve had a lot of pain this month with my hands, my feet and severe spinal pain but I’ve been doing the best that I can.

On a happy note my foster kittens are now almost 2 pounds which means they will  be able to go up for adoption next week and I’m really excited for their futures! Being a foster parent for one of the Animal Shelters here has been such a blessing to me.

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I was able to go on a motorcycle ride on the 13th which was pretty fun I love when I’m finally able to ride every week.  Riding clears my head and makes me feel good even if I’m feeling crappy inside.

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This past Tuesday on the 16th I did a whole bunch of blood tests and I hope to have those results by next Monday. I am worried but, the truth is, it is what it is! I guess i can always go to Narnia. HA!IMG_7732

 

I encourage you all to check out Loveyourmelon. They are a group of college students who help kids with cancer by selling these super cute beanies. I absolutely love mine!

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On a very serious note, i really want to take a second of everyone’s time and talk about how you should talk to someone with a chronic/terminal disease.  I know i have talked about this before, but after reading this last months 2 separate support group page posts, i am a little upset. It would appear that people in general do not know what to say to those of us who are sick and usually end up doing on of two things:

  1. Telling us what you would do differently, if you were in our shoes
  2.  Try and push on us every article/book/post that interests yourself that you think will benefit us if we just read it.

First off you are not in our shoes, so please do not tell us what you would do. because honestly you don’t know what you would do. You are not in our shoes just like we are not in yours. Do you like people telling you how to raise your children? Do you like people telling you how to live your life? who to date? what to eat? Etc??? Then please do NOT do this to us.

Secondly, if you find something that interests you like an article, a book or whatever and you want to SHARE it with us, share it with us, don’t cram it down on our throats. Again just because YOU enjoy the material, it DOES NOT mean we will.

Now i am not saying to never talk about things to us, just find a decent way of doing it. Like hey i read yesterday apples help with inflammation, did you know that?  BUT AGAIN have some compassion because chances are we have heard this same info from 20 other people trying to be helpful. So just say what you need to and then carry on. If we “continue” the conversation, then talk to us about it. If we change the subject do not get butt hurt. We just get tired of all our conversations being about all these cures/natural medicines etc. TRUST ME if it helped we would ALL BE DOING IT. I love what one “spoonie” said the other day,

“nothing spreads faster with the sick than a cure.”

If there was a CURE, we would not be sick. Many of us feel this way. Please do not think we are not actively searching on our own for help. I personally have tried a million things, read books, listened to others etc. BUT here i am still sick. I have researched people who have stopped eating certain foods, stopped as many chemicals from being in their homes etc and they are still sick. Do you really think we just sit around enjoying being sick? Do you think we like taking poisons in HOPES it will help? Do you think we like visiting the Dr more than we see our families? Do you think i love being sick? This picture shows my life most days……DSC_0160 (2)

I just finished 2 books this month on the “health” topics and i have already done a few of the things these books have recommended just because to ME,the information/suggestions do make sense. But in no way do i believe everything i read or change in my life is going to CURE me. The only thing i know for sure is that i have HOPE.

I hope this clears up a few things for some of you. Trust me, i know you are just trying to help, but really your just pushing us away and making us feel worse than we already do. So please take my advise and just be gentle on how you bring things to us. Remember what i said above, you would not like it if someone told you all the time how they WOULD live your life or what you SHOULD do that would make your life better.  Love one another, lift each other up, not tear us down. I LOVE Emily Mcdowell cards, they say it all…

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Have A fabulous weekend….And remember life is SHORT, do not waste even a SECOND!

 

 

Are we worth losing?

Disclaimer, if your offended A because you don’t like what im talking about or B you think this  could be about you, don’t read on! This is MY site NOT yours. No one is making you read it. This is to people in MY life and for other spoonie family/friend members who refuse to believe it is them wasting our days. If you are sitting their reading this wondering if it is you, it probably is.

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I am so frustrated and i feel  very few  REALLY HEAR me. So HEAR ME NOW!!!! I don’t feel well. I have more shit painful days than good ones and yes that sucks . Yes it takes time away from your crap, it takes my ENTIRE time away from ME. And for the record here is all things I  did while SICK, i raised my daughter i did it, i didn’t just dump her off. I raised her through my fucked up health stuff.  I didn’t have the option to have the other parent take over the responsibility. I bought my own house a few years ago{then my health began to rock my world and not in a good way} Yes many things in my life are all messed up now…health fucked my world….SO what is YOUR excuse? Who you going to blame for your unhappy life whatever that entails? Who raised you kids? Are you happy in your own life? Why do you look the way you do/and or are you happy with the way you have turned out. I treat people with respect a long as they respect me…You don’t treat anyone with respect in fact you act like a child. I ask AGAIN what is your excuse? Ill give u a hint, look in the mirror. You are so good at putting blame on everyone else but refuse to look at your self. You know what I WAS doing well before this disease ripped me apart. I had a car, a house a LIFE. But here we are with you kicking me down like I am NOTHING. Maybe it is really all about how you feel about your self?! It IS TIME I TAKE a stand, even though I am SICK, I am a GOOD PERSON, I deserve many good things. I believe you do too but you are too busy destroying not only my life BUT yours. I could say more but I know once I say things, I can’t take them back.

While i am standing tall sticking up for myself for once, i appreciate everyone who cares by sending their notes, gifts etc. But here’s a little thing to think about before you spend your hard earned money. …. I don’t need/ want your advice on my health. Meaning just because you read or heard something doesn’t mean you need to push it on me.

In the last month i have received 4 unwanted soliciting. Again i know your heart is in the right place but i would do more with fresh fruit from trader joes being sent to me. Because everything I have received this far is only someone else’s IDEAS. Trust me I do look into what everyone sends me but its either stuff I have tried or do not have the funds to do. I really want you to LISTEN to this quote:  A friend of mine summed this up perfectly…..

Nothing spreads faster among the sick than a cure that  actually works!   Please think about this~

 

Please  be kind to Me and others with chronic/terminal diseases. Is this how you have taken care of all your sick and or dying loved ones? If it is, you’re a piece of shit. We need compassionate, loving, supportive people and not  JUST when you want to be BUT always! Remmeber if you are suffering times that by 10 and you will have just an IDEA what we are going through.

A huge thanks to everyone that let me just “hang” so that I could deal with my new news and frustrations. Now its time for new treatments to begin and I pray I get some type of relief, because I am really getting to be done with this Life. Its very scary and its just too overwhelming especially when people say they will support you then bail.

Why is it always one person who says, im sorry?! News alert you are NOT perfect!

 

P.S. a huge thanks to the support group. I am so blessed to have others to cry and laugh with

 

Hey YOU

Hey you,

Yes, I mean you! I see you struggling, I know your pain. You think no one could ever know what it takes to get you through the day, what it takes for you to even get out of bed. I know your struggle, I know your pain. It’s real. You are not alone.

How do I know? Well, I am you. We are one and the same. I know of the pain that drags you into the deepest recesses of hell and makes you question if life is really worth all this. I am the young man who sits next to you in the doctors office praying this one will help him when so many have ignored his symptoms. I am the mother in the scooter trying to shop with two children in tow. I am the teenager who can’t get the energy to go be with friends because her doctors will not believe her because she’s to young to feel like this. I am the individual who sits in the dark with a gun in hand saying enough. I AM YOU!

How did I see past the mask? I have worn the fake smiles. Laughed and joked when all I really wanted was to curl up and die. I have said “I Am Fine.” more times than I can count. I have pushed myself past my breaking point to be and do what others think I should do. I know all the lines and all the ways to cheat and hide how I really am on the inside.

Daily you wonder if this life is worth all this pain. You wonder if you will ever feel normal again. You wonder if you will ever find someone who will love you with all your issues. You wonder if this is what will kill you. You wonder when the doctors will figure out how to fix you. You wonder if anyone hears your cry for help.

I hear you! I am you! Life right now maybe shit; but it can and will hold beauty again. Someday you will find the one person that gives you hope and love. They will give you a reason to live. They will hear your cries and wipe your tears. They will stand up to the doctors and not let them throw you away as if you were nothing. They will bring unimaginable beauty to each day.

Who is this person and where can you find them? Get up and walk into your bathroom. Stand facing your sink. What do you see? You are who you’ve been looking for this whole time. You are your own saviour! You are a kick ass warrior! You have the strength, heart, compassion, and grit to face anything. You will keep walking forward even as this disease weighs you down. Each day will provide the chance that answers will come.

Why am I talking to you? Well, the answer is simple. Even the strongest warrior needs a shoulder to lean on from time to time. We need other warriors to help us along the way. Some will make you laugh when you need it. Some will kick you in the ass to get you to do the things you know you should. Some will come along and give you hope just when you have none. And yet others will come along and cheer you on in your accomplishments. They will become your family, your tribe.

The bottom line is this: you are not alone. You never have been. We have been here for you the whole time. You see us now because you are us and we are you. You reached out and grasped the warrior in you. Stand tall, stand proud! You are a spoonie warrior!!! You have a never say die flame that burns inside. Yes, you have bad days. Yes, you will scream, cry and shout “Why me?”. In the end you will pick yourself up ,with the help of friends, family, and fellow warriors, dust yourself off and face another battle with courage and a fierce will to live pain free.

Just remember…I know you! You are me. You are one bad ass, never say die, strong, courageous, ass kicking, beautiful mess, spoonie warrior! And I love you!

From: Me.

Written by a fellow Spoonie named, Linda C.

Thank YOU Linda for writing this. I absolutely love this!

A quick update & A warm Welcome

Hi! Everyone. I hope you all had a good week! My week was pretty good. I love seeing new followers/readers. Its so important that we learn from each other. Don’t ever be ashamed of YOUR health issues. It is what makes you, YOU:-) It is so important to reach out for help when you need it. So WELCOME!!! I am SUPER happy your here!
My week consisted of me being back in the hospital but lucky for me, i had a terrific Dr who was able to help! Its so great when they actually read your chart! I also enjoyed some time out in the sunny snow. Had lunch and even did a little shopping. Felt so great to be out and about. One of the best weeks i have had outside the pain.
Again a Huge HUG to all the new people! Enjoy your stay 🙂