New Job….New Meds…College..New ME!

I have been a word press no show for a while and I do apologize however life has been in full swing and I feel like I am just now catching up!

July 2016 I changed jobs which has been amazing ~ I started back to college (not sure what I was thinking, oh yeah…… bucket list items) ~ and I changed RA meds (AGAIN)! That is the short version! SO ANYWAY I AM BACK!

I have adjusted to my new work schedule and environment, my class schedule feels calm now and my new med well the jury is still out on that but I will keep you posted. 🙂

I am now giving myself weekly Orencia injections and so far there have been no side effects. I am back to running more regularly after a hiatus with job, school and med issues, I am back in the swing and I am SO SO happy!

I have set a new goal to run a 1/2 marathon this year…which makes me even more motivated!

So here’s to changes….LET’S DO THIS!!!!

 

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I’m sick and I’m tired …really I am!!!

I’m sick, yeah no kidding right? I have RA spondylosis and osteoarthritis….today I am tired of it!!!

Sunday I ran 3 miles and felt great! Today I ran 2 miles and felt very step in my hips, feet, back, hands and shoulders. Yes I am complaining! Yes I am human yes today I hate arthritis.  I am two weeks away from my next infusion! I am wondering how horrible I will feel in two weeks. I am exhausted despite the hours of sleep, how hydrated I am or how clean I eat! I feel like I felt pre diagnosis!

Sleeping is painful, walking is painful, getting up from sitting painful, typing this- hurts- cooking hurts- I was writing this weekend and had to break so many times it was ridiculous! My goodness I am a complainer today!!!!

What is my point? Why am I crying and whining? Because THIS is RA!!! It’s not pretty! Sometimes it really shows its ugly head. It never goes away it’s always there and unless you have it usually you don’t understand. I don’t look sick on the outside but I’m burning and hurting on the inside. I’m smiling and doing all I can to live “normally” and pushing myself beyond my comfort zone to try and stay ahead of this deteriorating disease. I work, I cook, I clean, I exercise, I live, laugh and love. I don’t show the pain because it’s not going away, I suit up I show up and I move on, forward hoping one day there will be a cure for all those who suffer with disease.

Don’t misunderstand, I am beyond grateful for my life, my pain, my disease for I know there are those who suffer greater than I can ever imagine. BUT the pain I know is mine and mine alone to bear….I think most days I work to hard to just be normal for you, so you don’t know I’m sick or having a bad day, when really I’m just me living life the best way I know how…..and how can anyone else understand that???? Days like today come and go….they always will….but for today I’m just sick and tired and that’s ok!

A Girl and Her Daddy

My 40th year on this planet has been filled with life changing moments! I have changed jobs which included a change of industry, had a surprise birthday party perfectly planned by my husband, children and friends, and been surprised by my Dad and Step-Mom whom I have not seen in more than eight years. All of this in just the past few weeks! 

Life is too short not to enjoy all moments,big and small. God gives us blessings and miracles all of the time but the true miracle is in seeing them.

I feel like I am floating through my days on a cloud of excitement and blessings! When I come down from this high, I have no idea where my body will be with this disease but for today I absolutely do not care! I want to soak up every second of it all, I don’t want to sleep, I want to keep my Dad up all night and talk about nothing, I want to look at his face and memorize his facial expressions, his laugh, his jokes, his stance, his hands his eyes . I want to hug him one million times before he leaves Sunday. For right now I just want to be a girl with her Daddy. 

Small town = Soul renewed

I was raised in a small town….is that how a few country songs start? Seriously I was, raised in a small town down South. Once I was raised I married a Marine and left home. Two years later our daughter was born and 3 months after that we moved to California. That was MY choice, he wanted to move back to where I was raised. I wanted to get away from the small town life and do BIG things.

Twenty years later, two children, jobs, my husbands alcohol and drug addiction  (robbed us all of about ten of those years), sobriety and then a life better than I ever thought possible for where we had come from, then infidelity, and finally marriage renewal…whoa what a roller coaster! Oh and THEN RA and osteoarthritis……the ebbs and flows continue to this day.

What is the point of all of this? Life….what is our or better yet my purpose in this life? I have been pondering this over the last week while on vacation from our “life” away from the big city population 109,000 ish to a city of 3,709 folks. People are polite, not in a rush, they talk to you in the shops (not just to say hi). There are 100 times more trees than concrete and their wealth is in their families, their legacy and their land- not their 50-70hr per week careers, their 1 to 3 hr daily commute to work and back, $$$ in the bank, the size of their house or the cars and toys they have. 

People here still don’t lock their doors and some don’t even know where their house keys are!!! Sun tea is always brewing, meal time is family and friend time, Sunday dinner at someone’s house is still a thing and it’s part of the plan like waking up everyday, you do it and so does the rest of the family. When someone’s not home it’s still ok for your family members to just go in your house when your not there, well of course it’s fine, it’s family! 

Walks in the woods and down the “crik” Pants up to my ankles and then stepping a little deeper the cool water taking my breathe away. Watching birds fly and trees rustling in the breeze. Hearing family members offer their fishing boats and lake homes, come over for a fish fry. Their first thought is not, will they be able to afford to fix it if they break it, their first thought is hospitality. ❤️ A fishing pole in my hand, catching the first fish of the day….watching Uncle Tom in his fishing spot reel em’ in non stop and kind of smirk cause he knows how to do it better than the rest of us! Meeting Auntie Sharon who made me instantly feel like part of the family. Borrowing bikes so we had enough for 7 of us…again friends and family offered up…no one was concerned that their stuff was theirs and they paid for it…..if the world could be more like this everywhere…. oh and icecream in a town population 28, 5 restaurants and the Mayor is THREE! 

Arthritis has gotten to me a bit this week, fatigue, pain while holding a pole, issues with feet, hips and hands while bike riding….but I’d do it all again for the love and laughter and non judgemental ways of the people here. I feel like the lack of stress has actually kept my disease activity  on the low side because it is a huge trigger for me. 

I wish I could experience this more frequently but back to the concrete jungle I must go! My hope and prayer being that I can take home and keep with me …..all of this week. Happy Friday y’all make it a happy and peaceful one!!! I hope you find a way to renew your soul. 💕💕 can’t say I have found my purpose in this life but I sure think I’m a bit closer to it!

It’s the small things that can mean SO much!

Last Saturday I ran my first 10k it was HARD and it was AMAZING! Today I ran my second fastest 1 mile distance, my fastest 400 meters and my fastest 1/2 mile distance! Just as exciting!!!! Those small PR distances and times mean SO much to me! A stronger body, stronger lungs, clear mind, blood pumping moments I thought would NEVER belong to me!

The RA coupled with a 6.2 mile run last Saturday left my body in a depleted, swollen, exhausted way until Wednesday of this week. Despite biologics, rest, anti-inflammatory meds, and sleep I was burnt but I pressed forward determined to not stop until this body gives me no choice! 

So happy for this quick, small awesome 1 miler tonight! It meant so much!!! Happy Friday….keep on fighting the good fight!!!!

She doesn’t LOOK sick

Rheumatoid arthritis is a cyclical disease, I feel good, I feel great, I hurt, I am exhausted, brain fog, days of clarity, depression and other mood swings. Blood draws every few months, infusion days every 8 weeks. It’s a never ending process that my body is going through over and over again. Medication helps but the flares still come and go. 

Im learning to love the good days and thank God for them. I have yet to embrace the bad days in a manner that brings me any type of peace but I have faith I will get there. I tell myself this too shall pass….and it does sometimes swiftly sometimes it takes days.

Over this past weekend someone said “she doesn’t look sick” it wasn’t about this disease and honestly I don’t remember who or why it was said, but it stuck me like a knife. I don’t “look” sick. On any given day you could probably lay your hands on mine and feel the heat radiating when I’m in a flair….but I will still cook for you, clean for you, smile and laugh with you, because this is my life and this disease is just one part of me…and it WILL NOT WIN. My husband can touch the lower portion of my back and he will know I am in pain by the amount of heat he can feel. I will still run, I will still practice karate, I will still workout at the gym…. Because I can. I do not look sick but just like me and countless others it’s how we deal with what life throws us and it’s always tossing something somewhere, this just just happens to be the thing that landed in my direction.

Fighting the good fight….hope you are too!!!

Self love and hate

I’m putting this out into the world today because I have hated my body for most of my adult life. HATE in my opinion is one of the ugliest four letter words that exist….but that is how I see my body…with hate. My body that held my two amazing children, the body that has held my mind, heart and soul for nearly 40 years and hopefully many more… this body now does more amazing things than I ever thought possible like karate and running while managing the challenges of RA/RD and Osteo Arthritis. I’m working to stop hating my body and start loving it instead. I have been working SO hard physically and nutritionally because I want to love my body instead of hating it but what if I love my body all of the time and take the best care of the only one I’ve got with love instead of hate ….just a thought. Wishing you all a healthy happy Thursday.

***Me Me Me***

Today marks the beginning of week two since my first Simponi Aria infusion. So far so good….fingers crossed and prayers for continued success!

I am really staying focused on my own well being these days which is really different for me. In the past, my “M.O.” was caretaker of all people places and things……..except me. As a result of a lack of self care I fell apart when things went in a direction that wasn’t fitting into my plan. 

I lost myself completely during my husbands battle with drugs and alcohol. For a decade I tried to get him sober and keep him employed while raising children, working full time and taking care of the home and bills…there was no me left by the time all of these things were handled in a day.

When he found sobriety in 2004 I sought my own help which planted a seed of self love and rediscovery of who I was. I won’t bore you with the details but life was a roller coaster even through his sobriety. (That will be a story for another day)

In 2014, I was diagnosed with Rheumatoid Arthritis which came after 6-9 months of nonstop X-rays, lab work, doctors appointments, insurance calls and waiting waiting waiting. I was devastated after the diagnosis… All I could think of was one day being in a wheel chair watching the world walk past me. I spent some time in self pity but then began my own reading and research of this disease. I was afraid but I knew I could do this…. I immediately wanted to begin biologics but HMO insurance requires a different plan. One and a half years of medication swaps,  side effects, ineffective treatment, treatment that worked then tapered off, pills, injections, lab work, insurance submissions and more X-rays I am finally able to tread the path I hoped for in 2014. 

In the past I rarely went to the doctor, exercised, chose healthier foods, stood up for myself or spent time working on things for me.

Today it is different, I look out for me which in turn is really helping my family. If I am healthier and happier they see that and the mood in the home is more peaceful and productive. 

I thank God every time I hit the pavement for a run no matter how easy or hard. Every time I run I think of all of those with debilitating arthritis and other diseases or situations that prevent them from the ability to move their bodies the way I get to today. I run today because one day I may not be able to!  Sometimes it’s ok to be all about Me Me Me because then I am in a better place emotionally spiritually and physical to care for the other people places and things in my life!

What have you done for yourself today? I pray it is something healthy happy and amazing just for you! ❤️🙏💪🏻

Simponi Aria Day 1

April 25, 2016 

I have been waiting for this day for almost a month. Insurance approved and first infusion session was scheduled. I also agreed to participate in a study for my infusions. 

I was taken to a room and then visited by my rheumatologist who asked a series of questions about how I felt. He checked my joints and felt them. I asked him about the effectiveness of this treatment with plaquenil (I do not take methotrexate as it wiped me out early in my diagnosis to the point of not wanting to get out of bed). The decision was made to continue with the plaquenil with Simponi Aria and if the results are not what we hope we will re-introduce methotrexate and see what happens.

After the assessment by my Dr., he filled out forms for the study and shook my hand. The nurse and the infusion specialist entered, I was given ibuprofen and Claritin. The nurse had me filling out the questionnaire for the study…mostly how I was feeling and how my joint pain effects everyday life. The infusion specialist looked at my veins said I have good veins ( I hydrated as much as possible prior) he cleaned the site and inserted the IV….he then said it would have been funny if I missed after that comment…. We all laughed and I said funny for WHO?? I thanked him for making me laugh…. It really eased my stress about the whole thing. The IV was started… I finished the questionnaire, did some reading, added a photo to insta for my rheumatoidrunner profile and boom I was done! 

I went back to work, feeling the same as I had for the past few weeks, not that great. I went home after work took a 4 mile run….which felt great mentally….I am so pumped with hope that this treatment will work I was super motivated!!! 

I slept pretty darn good but it took a while to get comfortable and fall asleep (pretty normal for me) slept pretty good with the exception of one nightmare. 

Up this morning not quite as stiff as usual  and still feeling hopeful. I am looking forward to the next few weeks as I have read that is when others have seem improvement…..next infusion in Four weeks then every Eight weeks! I like the sound of that!!!

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