Category Archives: Daily Diary

Just what it says…this will be where I BARE ALL…

What Makes you Vulnerable, makes you beautiful ~Brene Brown

Happy November everyone.

 

I am still having horrible pain in my spine. I feel so helpless when the pain gets to a point that I just can’t deal with. Again, I am really hating this pain pump. It  is NOT for me!  Since my last post I have gone back in twice to have the pump turned up. So that makes 6 appointments since new meds were put in pump last month. This shit is getting old, real QUICK!

I find it hard to function some days with this pain.  I just want to lay in bed and scream. I keep praying that some day I will wake up and the pain will be gone,but I know it is only going to get worse.

Then I read about the “opiod crisis” and what the government is planning on doing and I just sit here on the edge of my bed and shake my head. Just like anything else, laws ONLY affect LAW ABIDING citizens.  I do not understand how people who do not have chronic illness can make decisions for those of us touched by chronic illness/pain.

 

To those who are judging us with chronic pain and or putting us in the same category of addicts….

Do you know what it is like to wake up all hours of the night in so much pain that you wish to die? In the morning do you awake with  so much pain and stiffness that you have to lay in bed for awhile before attempting to get ready for the day? Do you know what its like for your health to affect your entire life? Jobs? Relationships? And now you want to take away the only thing that helps many of us have a semi life? You know there is a difference between between addicts and Chronic pain sufferers.  Addicts are chasing a “high,” Chronic pain sufferers do not get the same  “high” feeling, they get RELIEF.  Why don’t you spend some time with some of us who have a chronic illness, so you can see first hand how important our medications are to us. How they ARE a necessity.  We REALLY do need them to survive, to have some kind of life. If i didn’t have a pain pump and breakthrough meds, my life would be a 100 times worse. My life would definitely not be worth living.

 

The pain that many of us live with is SEVERE. We have already accepted  that we will NEVER be out of pain but we deserve to have a happy medium. While you are looking up statistics, why don’t you look up suicides due to Chronic Pain not being managed properly.  In the future all I see is more suicides and more chronic pain patients running to the streets for any kind of relief from the pain.  I was asked a while back if I could have one super power what would it be? The power I would choose is the one that allows me to touch others and make them feel my pain. I guarantee you would be shocked at how much pain I feel ON pain meds, My  “normal.”

 

 

LIFE

We made it to the 49er/Ram game!

Even though my team lost, the awesome seats made up for it! It just felt good to be out and about. Lately getting out of the house has been a luxury. RA and EDS robs me of so much life. So I feel extremely blessed to have made it to Santa Clara for the weekend!

 

We also went to the Winchester House for the Midnight Candlelit tour.

Then on October 30th I went to the Lone Mountain Cemetery walk.

 

These past week, I haven’t done much but go to doctor appts. I have more blood tests this coming Monday and I hope to have the results by the following Friday. These blood tests will show if my disease has been progressing off of chemo and biologics.  If it has progressed a lot, I will have to make a decision on whether I want Quantity or Quality. I didn’t choose this life, it chose me.

 

FINAL THOUGHTS

 

I don’t know about all of you, but I feel so overwhelmed with everything my disease is doing to me lately.  I am so tired of all the different ways it affects my life. Day after day, I have to tell myself, “one more day.” I keep telling myself just one more day, tomorrow will be better when I know its complete bullshit. I know that tomorrow will be about the same. The same horrible pain will wake me up and I will sit there and scream in silence. The same 4 walls  will continue to be my prison, unless I am lucky enough to push myself to go to work. The thoughts that consume my mind,  I know I will spend part of the day fighting off. All of the “regular life” stuff will continue to fall to the wayside because most days the only energy I have is spent on doing basic things like bathing.

Tomorrow I know I will have to decide on how bad the pain is and if it is worth taking a breakthrough pain med. Just in case you didn’t know we only get an allotted amount every 30 days, so I have to decide how much pain I am willing to take on a daily basis.

This is my life now, this is my life with chronic illness/pain. Some days are easier than others, some days are awful and I just want the whole world to go away.  Some days, I am so tired of feeling like I am drowning and everyone else is too busy LIVING life to stop and lend me a hand. I am tired of feeling weak and vulnerable.  I am tired of being SICK and in constant PAIN. I get so tired of no one understanding. I get so tired of believing in others only to watch them fail me in one way or another. Tired of all the medications the doctors shove down our throat. Tired of fighting a battle I know I can’t win.

Then there are days that I feel like I CAN breathe. Days that I almost like my life. Days I can feel the sun kiss my skin. Days that give me hope. Days where I feel stronger than my disease. Days that make me feel alive.   Either way I never know how my day will be till i open my eyes in the morning.

I guess my point to all of this is that we just have to take every day as it comes. We have to keep pushing through the shit days to enjoy the joyous ones. For me that means some days I have to take it second by second.   We  didn’t have a choice to be sick, but we definitely have a choice on how we let it affect our lives. Hang in there spoonies…. XOXO

 

 

 

 

 

 

 

 

 

You Say Witch Like It’s A Bad Thing

Happy October

HEALTH UPDATE

Since my last post, the doctor has increased my pain pump 3 times but unfortunately I have not felt any difference with the new meds.  Still very disappointed with  this pain pump.  I have now tried several different meds and still feel this horrible daily pain.  I was praying that the new pain drug we just put in the pump would be better than the last but so far, i feel at times more “drugged” with less pain control…..

Living with pain 24/7 is probably the hardest thing I have ever had to experience.  It is so frustrating when all I want to do is ENJOY life.  The pain keeps me up at night and makes me anxious during the day.  In a few weeks, I see a new pain specialist and I am praying he has some other ideas on how we can make me more comfortable.  I know that I will never be 100% free from pain but on a scale of 1-10, I would like to be at a 4 and currently I am at a 6-8 depending on the time of day and /or whether I have taken any oral meds for ‘breakthrough” pain.

On the RA front, I am still not taking any man made drugs. This week will be 8 weeks off all chemo and biologics.  I am still taking cats claw a natural TNF blocker and other vitamins. For the most part, I am still “clean eating.” However I am cheating every once and a while on shit I know I should not be eating. This disease now that it is in my organs will eventually kill me, so I am going to have some CHEAT meals! Life IS short!!

As far as the EDS and Gastroparesis, I am taking some supplements for my intestines and I am doing low impact yoga and balance training every morning. I believe for me, I am doing what I CAN do for myself at the moment.

Spoonies, take care of yourself, but do not forget to LIVE some <3

LIFE

Even through the pain I have been able to make it to work. My work family is  awesome. They keep me smiling .

And for ONCE in my life, I have the most amazing man in my life. He encourages and supports me everyday NO MATTER how I feel.  Sure nothing is perfect but we are PERFECT for each other.

He is my GOMEZ

Last weekend we drove out to San Francisco to see his favorite band. We also went down to Pier 39, paid $80 to park, watched the seals and the US Navy Blue Angels and got some walking in. The most exciting part of the trip was sitting in traffic for over 45 min just to move .08 miles…

My sick ass could have WALKED faster…. HAHA

Of course it was hard on my body being so active, my feet bled, I had some internal bleeding and my pain was being an ass but it was so GOOD to get OUT!!!

AND in 2 weeks we are going to the 49er/Ram game and I am super excited. Football season is the best season!  WOOHOO

OCTOBER IS DOMESTIC VIOLENCE AWARENESS MONTH

Domestic violence has not just touched my life once, it has touched it twice.

My son’s father as some of you know beat me all the time and the last time the only reason why he stopped was because he thought he had killed me. I was lucky to survive.

Then my husband of 19 years abused me emotionally and physically.  He talked down to me and made me feel like nothing. He used my health against me and I stayed because I thought this is where i belonged and that someday he would just love me the way i loved him.

He would throw things at me, hit me, choke me, punch walls and doors.

People this is NOT love. No one deserves this! If you are currently in a relationship like this one, PLEASE get help!!! I know exactly how You feel, i thought i was too sick to leave, i maybe deserved this, no one would ever love me due to my health. I thought he would change. I thought my love as silly as that sounds would make him stop eventually.  TRUTH is, no one deserves this. If any body is going through this and you need someone to chat with, I am always able to chat. You are NOT alone!!!! LOVE yourself and get OUT.

FINAL THOUGHTS

Sometimes I really hate technology! While we were trying to enjoy the concert EVERYONE in front of us in the next row were on their damn phones…. WTF is wrong with people? Why is social media and texting so much more important than enjoying things RIGHT IN FRONT OF YOU?????

In a way I am grateful to my disease because being sick has opened my EYES to so much more. I have no need to keep my nose in a phone or be on the internet 24/7. I know life IS short and I would rather spend my time making memories, NOT texting, NOT playing on the internet, NOT being on Social media. Sure I still do those things but in moderation.  When it comes down to it, technology will not hold you at night, it will not be their to hold your hand. It doesn’t give a DAMN about YOU. So put that shit away when you are around others, enjoy them, make MEMORIES…… or some day…that technology that you let run your life……will be the ONLY thing you have.

The other thing that has been bothering me lately is how many of us get stuck in our past. We let our past be too much in the present. This has been something I personally have been working on. I sometimes think to much and allow what others have done affect what I might have in my future. I get down on myself, I get sad and I let it affect who I am. I get upset and waste time on things that I cant change and I sometimes  take on others baggage too. It is all just a waste! I am praying as time goes on all of this will get better, I would like to live in a world where my health is the only SHIT thing I got going on.  I want to spend what time i have left living a life I would be proud of and leave my loved ones with nothing but great memories!

Love each other, Spend quality time with those you love, take a MILLION pictures, have fun and get OUT and LIVE when you are able too! DO not let this disease define YOU or allow others to hinder what you were born to DO <3

As always thanks for all your support and love <3

I have made many friends on this health journey and I am so grateful to each and every one of you….XOXO

Great things NEVER came from Comfort zones

Hi everyone! Sorry it has been almost 2 months…

A lot has been going on so lets get started!

 

HEALTH UPDATES.…….

I hate this pain pump! I know I have said it before but I really hate this pump! My health  life has changed so much in this past year and a half and not for the good.

The whole process that my pain doctor puts me through is ridiculous!  I have to see him every 30 days for med check and then every 60 days for pain pump fill.  And lately i have had to make an extra visit for him to do this or that. Each visit requires a dumb dice roll which determines whether or not you do a piss test or not. And then each visit costs between 250-400 a visit! RIDICULOUS

As far as the pain pump I was promised that it would be the best thing ever for my pain and it would eliminate the need for oral or pain patches…..But that was just a bunch of shit…I have been back on orals for over 6 months! For the last 8 months at EVERY visit with him I have repeatedly asked sometimes begged him to either switch out the pain drug in my pump or to take the damn thing out.  I am sure the pain pump is good for some but it definitely has not been for me.  Anyways last week Ryan and I went into see the doctor but ended up seeing his PA. At first I was a little upset that I wasn’t seeing the doctor as planned but it ended up being the best appt ever. His PA seemed to be really concerned and she promised that she would talk to the DR and figure out something…the next day she called and said…we WILL be changing out your meds!!!

Fast forward to this past WED……the doctor removed as much of the old pain med in my pump and added in the new pain drug. But here is the thing….he was supposed to empty the ENTIRE pump, then prime and then add the new drug but he didn’t want to take the time.  So until tomorrow at 12:30 PM i will still be on the old pain drug, then like magic the pump on its own will switch itself to the new drug. So we shall see if it helps or not….fingers crossed.  I will hopefully do an update next week on whether the new pain drug is working or not..

 

As of this past Monday it has been 5 weeks since I have taken any chemo type meds and it has been 2 weeks since I have taken any biologics.  Some people think I am crazy and several doctors I have talked to say that this is a dumb move and that the RA will do irreparable damage and that I will regret stopping meds. But this is my life and no matter what i do I will not stop death…none of us can. So I am taking this chance and I am OK with it.  If i find that my health is getting worse, I do have a new biologic my Doctor has given me that I am able to take immediately. BUT until then I am 95% clean eating and taking cats claw daily which is a natural TNF.  I also have been using this foam roller on my spine where I experience a lot of pain and it seems to help a little which is better than nothing. Stretching does help sometimes.

As far as being off meds…… I am experiencing pain in places I have never noticed but I have been OUT of bed more than I have the last 5-6 months.  I have been going to the movies with Ryan and his parents. I have been on some ghost hosts, been to a concert and even went to the Rib cook off even though I was being pushed in a wheelchair.  It feels good to get OUT even though my pain has been ridiculous. This is why I am praying that the NEW pain drug helps. It would be nice to get out and NOT feel as much pain. If you have any clean eating recipes, send me and email or DM on my Instagram!

 

I have only been in the hospital once this past month which is GOOD.  It can be a challenge entertaining yourself while waiting on doctors… 😉

I

 

 

 

BITCH SESSION…..

Just a few things I want to chat about…

When others stay quiet, I speak my mind because I want others to know the Good and the Bad with being chronically ill.

Life still happens to us however I feel sometimes people think because we are “sick” that we get a “pass” on other life experiences. This could not be further from the truth. Some of us still have jobs, we have families, we have bills just like the rest of the world. The only difference is we do all these things in constant pain and experience extreme fatigue etc.

With that said, when we ask for help, we really DO NEED IT. and sometimes especially for me it is hard to ask for help because I don’t like feeling needy or a burden to anyone.  So if I ask you be upfront on whether you can help out or not..its common courtesy….. DO NOT BE AN ASS!

Another thing…..

Time is precious, even more so in my opinion when you are battling a disease or cancer. So please do not waste our time being on your electronics. Life is short make memories with those you love or go live with your electronics….choice is simple….

 

 

 

                                      NOT ALL THINGS GO BAD…..

 

Some good news this past month is we were able to get the car I have had my eye on this past few month…. Here is my new ride!

For once in my life I love my car <3

 

FINAL THOUGHTS……..

Take life second by second!

 

Remember you ARE not alone…….Keep getting back up….keep up the fight warrior <3

XOXO

 

 

 

 

 

 

 

 

Never Going Backwards

 

Sorry it has been a month since I have written but my body is being a complete asshole and that is saying it nicely.

I  want to share some of the bullshit I have been going through so you all at least know what is going on.

As if it wasn’t enough going through what my body has been going through, i also get to deal with people saying one thing and doing another. Here is some advice, take it or leave it…… DON’T OPEN YOUR MOUTH UNLESS YOU PLAN ON DOING WHAT YOU SAY!  I am DONE with words that mean absolutely NOTHING.  I have zero TIME to wait on empty promises.

There are only 24 hours in a DAY, use your time wisely. I spent 19 years in a relationship where my cats where more attentive and will be dammed if I ever allow anyone to treat me that way again.  This is for EVERYONE.  I will NEVER go backwards, a valuable lesson I have learned is that their is always someone waiting to spend time with you, so don’t waste it on people who do not deserve you.

Lately I have spent more time in bed than anything and it has been a reminder that my life is short and what time I have out of bed will be spent with people who actually want to be in it. PERIOD

I appreciate all the emails, calls and texts I have received during this rough patch! I am sorry if i haven’t gotten back as quickly as I would have liked but I choose not to spend all my time on electronics. I hope you all understand.

 

Some of you have asked about my last blood tests, I purposely have been avoiding them and this is why…. My last tests confirmed that I have the worst version of my disease, I am 100% seropositve. I do not want to go into details but if you are curious, look it up. It sucks, i have been so afraid to see this word ANYWHERE in my chart. But hey at least I finally know why my health has been deteriorating so quickly. It confirms why my pain is off the charts and why nothing seems to be helping.  So that’s the shitty news…..

 

So as you can imagine my moods have been like this….

 

This past month has been the hardest in a long time, I have prayed to die, prayed for help and prayed people pull their head out of their asses….because LIFE is happening RIGHT now and it hasn’t been a bowl of fucking cherries. I am so frustrated, I feel alone, I feel doctors are fucking idiots, I feel like i am wasting away and see no end in sight. I fucking hate RA, EDS and all the other little fuckers that are killing me!

I hope to write more next week until then keep the prayers, positive vibes coming my way, i need them more now than ever.  XOXO

Its summer time Bitches

I hope you all are enjoying the beginning of summer!

 

I plan on answering more emails next week as this week has been a bad week, my body decided to be a pill.  I missed almost an entire week of work and I spent some time in the hospital. It was just one of those weeks when you want to “tap out.”  I was completely miserable. the dizziness, the vomiting and the all over feeling like shit does get old…..

 

BUT…..  today I was able to get back to work! It felt so good to be out of bed and be around my work family.

I do not feel as good as I felt 2 weeks ago but I definitely feel better than the past week.  My blood tests are not good and my inflammation has been high and I know that is why my body hurts so much but dammit, I really can not take anymore weeks like last week. It truly takes all I have to stay optimistic when my body keeps being an ass.

The Doctors try and help  with the pain control but sometimes nothing seems to help.  I  just have to push through it and pray for it to end. It is so frustrating, scary and really getting OLD. I want a break, a break from it all.  My inflammation numbers are very high and have been for awhile now which angers me. It angers me because the Chemo and Biologics I am taking are supposed to be helping with that and it is not. I feel like I am suffering extra due to medication side affects for NO reason. The Doctors are meeting in the next few weeks to discuss what is next for me and I am praying that it is something better than what I am currently going through.  Truth is all the ideas they have already discussed with me are no better than what I am doing now, essentially new drug name with same fucked up side affects.  I really am trying to be optimistic but I feel so burned out. Until they find a cure, I feel I am in a never ending battle that I am never going to win.

 

Nevertheless……..Now more than ever I do want to live, because FINALLY outside of my health things are GOOD. I want to see where this new path is leading.  I have been enjoying hanging with friends. Going to our favorite Bar with the group…

having BBQ’s with the Walkers…

 

But Most importantly I have been enjoying my time with the Best Boyfriend a girl could have.

 

Ryan thank  you for showing me that broken pieces can go back together. Your love and support have been such a blessing to me. What is so great about you is that you never had to say the words, “i love you,” because you have always showed me that you cared. It is so good to have someone just do things without having me to ask. The way you comfort me when my health is kicking my butt has been a nice change. I love that I can count on you to be supportive, I know you have my back. I love you for all the above reasons and so much more…………….

 

To my spoonie family, keep fighting, keep putting one foot in front of the other and NEVER give UP!!! I do not know about all of you but being sick and shown me how STRONG i can be and that I can get through whatever life throws at me!

As always thanks for all the love and support XOXO

 

 

Blanket Of Scars

I have been getting a lot of emails in regards to how I am doing in my health and personal life, so here is an update….

 

PERSONAL LIFE

I have kind of been all over the place emotionally.  Even though I feel blessed for how my current Personal life is, It has been hard to just turn off all the feelings of the past. For some, it is easy to move on but I also know that when you do not deal with your past it ALWAYS comes back to get ya….eventually. So for me, I try to deal with the past a little at a time that way it doesn’t bite me in the ass later.

It has been 3 months now since my life was turned upside down and I still find myself to be a little vulnerable to certain things. It can be simple things that remind me  of something and then sometimes it can be something huge. But no matter what the something is, I always find my way to keep positive and continue on my new journey.

A few of the emails and messages I have received have asked how I feel now emotionally compared to when it first happened. I would like to  take a moment and answer….

This above quote says it all! I think most of you would agree that when you choose to spend your life, your time with someone that even when things go bad, you can both have the decency to be respectful to one another. But throughout this whole mess, I have been BLOWN away at how i have been treated. I guess in the end 19 years did NOT earn me the respect I feel I deserve, instead I was slapped in the face over and over again. I was told it would  all be amicable and that their would not be any hard feelings. I could keep my car that I had been paying on for 4 years, i could get all my belongings…etc But in the end all I got was lies and more lies.

I was hurt physically, I was cheated on but nothing hurt worse than the way he lied to me.  Of all the people in my life, I never once thought that he would be the one to be  behind the trigger.  Betrayal can be so painful.

But with all that said, today I stand tall. I have forgiven him, pushed him off my path and have continued on. I know there will still be a few moments when he crosses my mind but now I am confident on how I will deal with those moments. I have grown so much in these past few months and I love getting back to feeling like ME again. To sum it up, He was a blanket I carried around for 19 years, and due to his behavior and  his issues the blanket(him) became old and ragged.

I do not need a blanket anymore. I GOT this SHIT!

Sometimes you have to go through the rough times to see the beauty that is in your life.

 

HEALTH

For once in my life my health is the WORST thing in my life.

My cell death is really high and I am on the highest dose of chemo/biologic mix. I have several Dr appts this month and I am praying that my specialist has an idea on what to do next,  Because the current regiment is NOT working.  I want to see what tomorrow brings! I want to live! I want to enjoy whatever time I have left.

I hope this answered most of everyone’s questions. I will update when I can.  As always,Thanks for all the support and love!

New Beginnings

 

So many people I have talked to lately are going through some tough times and are having a hard time adjusting to one thing or another. I thought because I too have been going through some stuff that I would share how I have been able to push through.

For me I have had to make some tough decisions whether it be personal or health wise. I find it never to be easy but when shit hits the fan, I have found that if I just push my feelings aside and just keep putting one foot in front of the other, i do ok.  Then when I have a moment of clarity, I let my feelings surface.

In my opinion no matter what you are going through, you have to do 3 things:

  1. Never give up
  2. Act Smart
  3. Remember who you are

 

Never Give Up

This is important! Nothing others say or do is because of YOU. So take second by second and don’t over do it! Remember everything YOU Do and don’t do will affect your health.

 

Act Smart

When you are going through things, sometimes we lead with our emotions. Make sure to keep your emotions in check. Be the bigger person if someone has hurt you and do NOT play their games.

 

Remember who you are

Do not let others affect how you feel or think about yourself. The only opinion that matters is YOURS. You OWN your feelings.

 

 

I know life can be hard and sometimes things just seem to never get better but you must continue on. Find something to keep you busy. Find out what YOU love to do not what others want or think you should do.  Life is too short as most of you already know.

So get out and LIVE life!!! Push through the bad days to get to the GOOD days!  Enjoy all the NEW BEGINNINGS!!

XOXO

The Road I Now find myself on

 

 

Tonight I am going to try to get some of the emails I receive answered.  I will also give a health update.

 

It has been 9 weeks since my life took another twist and I was once again thrown onto a new path but so far I have been able to keep one foot in front of another. I think it is important to share my story in hopes that it continues to push me forward and help others who may be going down the same path as I find myself on now.

Lets get straight to the emails and then I will share what has been going on with me and what is next for me.

1. I have been following you since the beginning and I am always amazed on how you stay positive, how do you make it look so easy? 

First off thanks for following, I love to hear from you all! To answer you question it is NOT easy to stay positive through any of this thing called life. To be honest none of this has been easy.  For me I have had to force myself to keep going and to not look back.  And when I find myself starting to look back, I quickly remind myself to keep looking forward because there is NOTHING behind me worth turning around for. As far as my health I have do the same thing…always look forward because stopping and feeling sorry for myself or stressed out about my health gets me nowhere but wasting valuable time.  Thank you for telling me I make it look easy but it could not be farther from the truth.  my advice to you is just keep your EYE on the PRIZE in FRONT of you as much as you can. Never give up on Yourself EVER. This life is for YOU, no one will make you happy but yourself.

2. How are you taking care of your health and emotional state now that you are on  your own?

This is a great question. At first it was super hard to ask for help. I am an A personality and it took all I had to ask others for help. But now that I have, everything has come together as good as it can be.  I have learned how much compassion others around me have especially the people I work with. I feel extremely lucky to work with the folks I do.  Many people have stepped up and offered help with Dr appt visits, hospital visits and so much more.  On a personal level, I have also learned to lean on my faith more than I ever have. I pray to God every night and thank him for the blessings I have and the ones I know are to come. Since I am on the topic of God, I just want to throw this out there….( a couple of my friends although supportive of what I am going through have mentioned more than a few times that I should be mad at God for allowing me to be continuously sick and then allow people like Brian to treat me like he did.  Everyone has a right to an opinion and here is mine in regards to the above…….I am not mad at God, he isn’t the one making me sick or treating me horribly, He is however the one who made sure I had good people in my life that were able to DROP whatever they had going on in  their lives to help me with all that I have needed. I am not going hungry, I have a roof over my head, I have transportation and my life is so full of laughter and joy right now….who else could have made that happen in such a short period of time?!)

So to sum up an answer to your question, I pray, I put one foot in front of another everyday, I keep up with all my medical crap and I PUSH my self to find something positive each and every day.  Sure some days are harder than others But I never give up!

3. Have you been able to look back on the last year yet and see your life in a different light? Do you think you settled with the life you had because of your health?

YES YES and YES!!! It is funny that you ask this question because the other day I had to go back and find some “info” that I needed for a project that I am currently working on and I was able to see through clear eyes the life I had settled for.

I think many of us who are battling our bodies everyday find our selves settling for one thing or another.  In my case I found myself feeling “comfortable” with crying myself to sleep every night, I had accepted that even though someone was lying next to me every night, I WAS alone. I settled for relying on others to take me to monthly Dr appts, to the hospital and worse than those two put together….I settled doing chemo and biologic”s on my own. I had convinced myself that in order to keep the peace at home, I had to only be “sick” when it was just ME, when he was around I had to fake be healthy or at the very least feeling good. I HAD to become 2 people and in the process I lost who I WAS. If you are finding yourself in a similar situation, take a good look at yourself in the mirror and if you do not recognize your reflection, you really need to make some changes.

 

4. Hi, I am currently going through a divorce right now and I feel so alone and lost. Will this feeling ever go away? Is there hope for us that already have so many issues in life like bad health? In your opinion do we really have a future? Will anyone ever love us, all of us, including our health?

I actually received several emails asking the same thing. I will try my best to explain how i feel on the subject and hope you all can take what you need from it.

First off my heart goes out to any of you going through breakups/divorces etc. I truly feel your emotional pain. In my opinion I think people throw in the towel so quickly anymore. We all stand before God and make these vows to always be there for each other NO MATTER what and then find out the vows were empty promises. And then when you are dating, people will love all what you bring to the table, but then later turn there back on you for the very things that they fell in love with the first place.

It is like people are always looking for the next big thing. Or for greener grass..when the grass will ALWAYS be greener where YOU WATER IT!!!!!    With all that said, you can’t take anything personal, because what others do and say is THERE MESS NOT YOURS and you have to find a way to remember this.

Feeling alone is completely normal, they say that any relationship that ends is like a death and you will find yourself going through all the emotions of mourning. I think that being alone with yourself can be very beneficial.  It is those who jump relationship to relationship , within days are those who will have issue after issue because if you do not give yourself time to “mourn” over the last relationship it will sneak up on you at some point and when it does…..it will affect the new relationship you have taken on…i GUARANTEE IT.

As far as a future, I believe each and every one of us has one. We just have to keep going and always put one foot in front of the other. Do not spend your time waiting for the “right” person to come along, I believe that the “right” person will come along when we least expect it. So spend your time doing stuff for you, make your self happy and when you do the “right” person will come along. So take care of YOU. I know there are people out there that WILL love us, all of us, I have seen it. So do not give up.

MY HEALTH NEWS

For the most part I have been feeling ok.  I have even been able to get out and do a few things which is GREAT!!!

Of course i am still having the usual pain but nothing I haven’t been able to handle(most days). However I had to do my blood tests this week and so far 2 have come back bad. my cell death has more than tripled, it went from 32- 122.  So last night I had to do the highest chemo/bio mix I have ever done and it kicked my ass.  I woke up several times during the night screaming out in pain and it is nights like this that I wish God would just take me. Not only did I wake up today with a lot of hair on my pillow, I felt like a truck hit me. I have been dizzy and running hot all day. I hate how these meds kill both the bad and the good cells. This is no way to live life.

My next Dr appt I am going to beg that we change the meds. I can NOT keep doing this. I am miserable and it is not working anyways, the blood tests prove that.  We are still waiting on 2 other blood tests but at this point I am sure they are bad. But with that said, I am just going to pull up my big girl pants and keep FIGHTING, I have no other choice! This IS the road I am now on and I must keep walking down it. Warriors DO NOT QUIT.

Thank you to those of you who are always my support system, you all keep me on my toes and remind me of why I continue to fight!!!

OXOX

The Power of Friends

I have been trying to get back to writing weekly but as most of you know, I have had to take time to rebuild EVERYTHING. But Today as I write this I have never felt better about where my future is going…..so lets get this post started!

First off I wanted to say THANK YOU to ALL of you who have stepped up to help me with what ever I have needed this past 2 months. You really find out who has your back when shit hits the fan. No words could ever express how much you all mean to me.  Thank YOU. This website is a very big part of my life so whether any of you like it or not….I have a few things to say to you all…..and would you expect anything else from a writer?….I thought not….so DEAL with it CODY….I know it will be YOU who will roll your eyes…..

Alisha you made sure even while in another country, I had a safe place to go to and you have been there by my side ever since. Thank you so much! Girl power!

Rebecca and Sarah You two GOT me through the worst week, from pizza to face masks to Songs that forever changed my thinking….thank you both

Derek and Eric thanks for being my moving company a few times *Wink

Julie, Rodger, Kristina and Bill…..Thank YOU! My heart is so overwhelmed by the generosity of the 4 of you…I really have no words…Just Love

This next group of people I want to thank I consider my family, I see them more than I see anyone and when my world was torn apart, they all came together to see how they could help and to me that is family. So thank you Jarrett for your gift because that is really what it was. Cody and Whittney I know I thanked you both but this website is where i bare my soul and it wouldn’t be right if you both were not a part of this post. #shoppingwiththewalkers 😉

Thank you Ian my work hubby….You let me escape, drive fast and I know you would do just about anything to make sure I am ok..I love ya

Moses, Steve, James, Dusty and Ashley(ASH) LMFAO…You all push me forward and keep the days full of laughter……..

Kim I will miss our snapchat pictures….guess I will have to find a new victim……Wendy are you up for the challenge?! HAHA 😉

Thanks Delia for keeping me beautiful and for my awesome spoon flowers!!!!

And finally to the person who keeps a smile on my face…..Ryan

I am so grateful to each and everyone of YOU!!!

HEALTH UPDATE

So here is the crap news…..My CRP, inflammation and blood pressure have all been awful. I now have inflammation around my heart, my blood pressure is very low and my CRP is through the roof. I have been off one of my chemo meds for a little over 3 weeks now and unfortunately the Dr said I have to go back on them next Monday.

I will be doing blood tests every 3 weeks so that the Dr can watch how much the progression is destroying my body…So we shall see what happens.

I am trying to find the positive in all of this and the only thing that keeps me going is the Dr’s originally said I had 7 years to live and I have flew right by that number!

So until my body quits I will just keep showing it who the boss is!

To everyone battling something now, know that you are NOT alone! You got this shit! Do NOT ever give up!

Next week I will try to get to everyone’s emails…..until then keep Fighting <3

You do Not have to love me, I already do!

First off I know that I have not written in almost a month but in my defense, I have been going through hell. Between my health and my personal life, I have been busy. And I have been waiting to come from a place that doesn’t feed off just anger….

I thought of all the posts before this one were tough to write but for the record..THIS one will be the hardest to date. If you have read the “all about me” post then you already have an idea of how my life with chronic illness has been and how others on my journey have treated me.

You would have read how my ex husband and I had found our way back to each other and what a miracle I thought that was…..well here is how that miracle went and ended…..

I have always been a forgiving person, I forgave him when he choked me, when he used my health against me and pushed me away…..i forgave it all….because I thought if I loved him enough, he would love me back just the same.  But after 10 years we threw in the towel, shit was hard on us, we were young and we had no one to help or show us the way.

Who would have thought that 5 years later we would find our way back to each other? At the time I think we both thought it was the greatest thing ever as we both had never stop loving each other. We had the kind of love that is so hard so describe. We always finished each others sentences and I always felt this magic when around him. And even though the abuse continued whether it be mental or physical(punching doors, throwing tables at me etc) I stayed because I convinced myself that with him is where I belonged. And I excused his behavior because I know how hard life can be taking care of someone with chronic illness, I blamed myself for how bad he treated me. I know this doesn’t make any of it right but its my reasons for staying. I think in my situation we had been together for 20 years, he was my person and eventually he would show me how he loved me more than just telling me.  But once again my sickness got used against me….he tried to run around all the reasons we couldn’t make it work but they all lead back to me being sick.  Funny thing is, he has his own health issues, but I never thought about leaving.  It is NOT who I am.  I love people unconditionally, all of us are broken in some way or another.

Worst part was how he shoved me out the door and replaced me like yesterdays newspaper. He said he loved me BUT………Enter excuse here…….then He kept saying all this would be “amicable” but everyday has been anything but that, but that is ok, I know it has to be hard for him to watch me not fall apart. Sure my heart broke but I have zero time to waste, life is way to short, so i just wipe the tears away, pull up my big girl pants, and keep walking forward and never look back. And every day it just gets easier…and that is how I know that I am doing it all right.

So I am moving on, all of us that are sick understand how hard life can be for not only us but for those all around us.  But it is ONLY a part of us, it is not all of us. When you push us away, treat us like dirt, try and break us….it is YOUR weakness, you are taking out YOUR pain, on us….and it truly is your loss. Nothing will ever make you happy and you will continue to bounce around until YOU fix the broken pieces of yourself.

Now that it has been almost a month, I actually think he did me a favor. He set me free from a cage, I could open myself because I was so blinded by what I wanted, by the person I loved more than myself.

I also believe that it wasn’t a mistake unless you didn’t learn from it. I have learned to never go back to what broke you in the first place, I am reminded that I do not need to cry myself to sleep because I am in so much pain I can’t breathe, I no longer need to beg him to take me to the hospital, I no longer am second to electronics, I am no longer a victim to his selfishness, lying or abusive ways.  The person I met 20 years ago and fell in love with is NO longer the person he is now no matter how much I wanted him to be.  This is the end of what miracle I thought we were given and all I will say at this point in time.

So today as I write this, a new chapter of my life has already begun….and I could not be more excited. Sure I am scared, every step I now take is new and my health has gotten worse But I know I got this. I often think of this bible verse Isaiah 43:2

“when you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.”

I still believe everything happens for a reason, we may not know at the moment what that reason is and I am ok with that. I have faith.

I have probably been “living” more these past 3 weeks than I have all last year. I have been going out and having fun…and parts of me that I thought were dead someone brought back to life and for that reason alone I can not thank this person enough.  I just wish my blood tests looked as good as I have been feeling lately. Surprisingly I have only been to the hospital once this month and that was due to internal bleeding and some issues with some new meds.

With all that said, I have to say a big Thank YOU to my RGR family. When it comes down to it, you have all been there for me in one way or another and I am eternally grateful. Alisha we are too alike, we have been through the same shit, we are both A personalities  which can make us butt heads and be crazy but when shit goes down, you pull me back to my feet…reminds me of the saying…

My RSO boys, you all keep me going, when I feel like giving up, you all hold me up and support me. You all rock and make me feel safe. Thank you

Ryan Thank you for your lips 🙂  and reminding me that I am beautiful and I still have a life to live……;-P  You “people pleaser you!” (wink wink)

To my moving crew ….I have no idea what I would do with out you…..it is however good exercise to move my shit a few times 🙂

Thank you Kim for all the laughs, fuck I am going to miss you so much…

and wendy..welcome to my post bitch LMFAO

Just THANK YOU ALL……..

Another thank you to those who gave me a place to live & a set of wheels to use…I am truly blessed!!!

Families will never be perfect, we will squabble, bitch about one another but I believe I have the most amazing non blood family.  All of you are my silver lining to all this mess called life. Many of you are amazed at how strong you think i am but truth is, I have a good foundation to stand on…you all.

On another positive note I have many projects coming up that I am super excited about and I pray my health can keep up with me. I am finally back to working on my book, I am sure this will make my publisher happy….LOL, I also have a 1776 photo shoot coming up in a few weeks, a project proposal I am working on and the online/skype support group for chronic illness goes live in a few months. See God doesn’t close a door without opening another one or in my case MANY…..

To everyone going through something……Keep putting one foot in front of the other  and live every second like it is your last! Cry if you need to cry, scream if you need to scream, feel the pain and then shake it off….. Sure things can get tough but until we are 6 feet under…..we got nothing but the  time God gives us…..use it or lose it……choice is yours…….Do not let others or our disease DEFINE us….XOXO