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
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.
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