August 2013

In August I had a visit with my primary care physician here are some of the doctors notes from that visit:

Problem #1 LYMPHADENOPATHY, AXILLA
ASSESSMENT: NEW
ORDERS: ONCOLOGY, XRAY CHEST AP AND LATERAL 2 VIEWS, OV

Problem #2 ARTHRITIS, RHEUMATOID
ASSESSMENT: UNCHANGED 

Problem #3 ANEMIA OF CHRONIC DISEASE
ASSESSMENT: NEW

Problem #4 LEFT BREAST PAIN
ASSESSMENT: UNCHANGED 



Lymphadenopathy refers to lymph nodes which are abnormal in size, number or consistency ^[1] and is often used as a synonym for  enlarged lymph nodes. Axillary lymphadenopathy: in localized axillary lymphadenopathy, the enlargement is restricted to lymph nodes in the axillary areas (both arm pits)

I was referred to the oncologist because of the enlarged lymph nodes and other symptoms I was experiencing. I will share that visit and more of my journey in the next blog! Let me know if your reading...

My life is DIFFERENT than yours...

Living with RA has enough physical challenges as it is. But on top of that there are mental and emotional challenges too. It's like being on a roll a coaster constantly. You are looking for a cure, not knowing who you can trust. wondering if doctors just want your money or if they can actually help, what works and doesn't, not being able to rely on people you thought you could when life throws this at you and the list goes on.

I do not want to dismiss or take away from any other condition or illness but what makes this one so hard is:

-there is no cure: with this comes the desire to constantly want to prove the doctors wrong and find a way for the disease to go away, not show up in my blood work anymore and all symptoms taken away and damage renewed

-it's dabiliatating: life goes from being perfectly independent and capable to in a wheelchair and needing assistance with everything. Taking away so much of what you used to be able to do. 
-its on-going: its not like having a baby or getting the flu or having surgery. When these things happen in life usually there is an out pour of people willing to lend a helping hand. When you have a chronic illness that last FOREVER it seems like rather the opposite happens. I'm sure there are several reasons why people shy away. Here's some I can think of: 1. its not a one time job, 2. if they offer to help there is no end in sight, 3.they can't relate and don't understand, 4.they think you can do it on your own because this illness is INVISIBLE. There are many days I have lied in bed and starved until my husband got home from work.
-its invisible: the #1 thing I hear most often when people find out I am sick is " well you look great." Altough I appreciate the comment, I don't look how I feel. I just wish once in a while I could have cuts and bruises, elbows and knees that are red,swollen- as big as bowling balls because then I would look more like I feel. :/

-it changes day to day: I can have a low pain day and do a lot and the very next day I don't have enough strength to brush my teeth.

Through my experience I don't think you can meet stronger people then those who have suffered, endured, fought, prayed and been through battle after battle trying to get through life. I have gained SO much wisdom through this journey. I want to share a little of this wisdom with you now. This is stuff you heard before but please listen and try to live this way so you don't have to go through something extremely hard in life to learn such a simple lesson.

Here it is:

LIFE IS NOT ABOUT :

WHAT YOU DO FOR A LIVING, WHO YOUR FRIENDS ARE, WHAT CAR YOU DRIVE, WHAT BRAND CLOTHES YOU WEAR, WHAT SPORTS YOU PLAY OR DID PLAY, WHO YOUR FAMOUS RELATIVE IS ETC.

LIFE IS ABOUT LOVE- LEARNING TO LOVE AND TO BE LOVED. THAT'S THE WAY WE WERE CREATED.

ALL THOSE THINGS LISTED ABOVE IN A SENSE FALL BACK TO WANTING TO BE LOVED AND TRYING TO FIT IN. HOLDING A STATUS.

ALL I WANT TO DO IS LOVE AND BE LOVED.

HARDEST TIME OF MY LIFE

From the dates of February 2013 through February 2014 was the hardest time of my life.  99% of these days I couldn't get out of bed until the afternoon. When I was able to get up by the afternoon I needed assistance with the simplest task, like getting dressed. I had to cancel jobs because I was physically not capable of doing them. I had several doctor visits throughout the next several months.
March: Dr. visit with primary in chronic pain, broken out in rash, horrible joint pain, pain in my left breast. 
April: Had a physical with my primary, he ordered lots of lab work. I had an ultrasound of my thyroid to check for abnormalities. 
May:I went to see the nutritionist of my medical group who was sure I had Celiac Disease so she ordered the lab work. Luckily this was one test that came back negative.:) Visit with the endocrinologist regarding auto immune with thyroid. ( result from blood work)
June: I was declining weight. My average weight for the previous 7 years was 127.
July:At my rheumatologist visit in July I weighed 117 and I was low in vitamin D and anemic. I had lost 10 pounds from being in chronic pain and not wanting to eat. My doctor ordered several x-rays and MORE bloodwork that day.

I reserved the little energy that I had to push myself to attend my daughters softball games throughout the summer.

I was hoping things would begin improving but there was more to come. What happened in August will be my next post...