Robyn's nest

I have 5 children. 3 I have birthed and 2 stepdaughters. They are Joray 22, Tazesha 18, Israel 12, Ava 8 and Titus at 1 year old. I love them all to the moon and back. Tazesha I have raised since age 4 and I am her mommy. Her father and I were together for 12 years. After she graduated high school in August she moved back in with me.
My family feels most complete with her here. Her sense of humor and silly personality is similar to mine. We dork out dancing to music and play uno. She has helped me so much since I got sick. She will help take kids to practice, help grocery shop and make dinner on occasion. She is also my evening walking partner.  
     She is leaving for the airforce next week. My feelings are mixed about this. The discipline and commitment  that comes with serving are positive  traits she will have forever. I'm proud of her but I wish she wasn't moving so far away. She is joining the airforce because she had no plans, because they will pay for education and because it will be an adventure. She is nervous, excited and out of shape. We have been walking with sprinting for her. I wish I could fly there with her and hold her hand like I did the first day of kindergarten.
     I look forward to hearing how basic training goes and seeing her at Christmas. I will wait by the phone for calls and send letters.

Adult onset stills disease

I'm Robyn, a 35 y/o single mother of 3 and a step mother of 2. My children are 12, 8 and 1. My life is rich with family. I have led a very active life including traveling, coaching basketball and being the captain of an adult volleyball team. I have worked since I was 16 and am an office manager for a catering company. Then a year ago I was diagnosed with a chronic disease.
After divorce & unexpcted pregnancy (failed IUD)  I find myself two weeks early at the hospital being induced for labor. The baby's heart rate has dropped a few times. Having had no complications during pregnancy, labor was no stress until they broke my water. I was then rushed in for an emergency c section because there was a knot in the baby's umbilical cord. Only 1% of babies are born like this. My beautiful son is born Aug 13th, 2014.
Two weeks later & a dear friend is visiting for the evening when suddenly my left knee starts hurting, then the right. I go to bed early barely being able to walk. Meanwhile I had a severe rash that several Dr's had attempted to treat. It was very noticable on my arms & legs.  I went to urgent care then hospital thinking I could have a blood clot in my leg. Then the fevers start. Horrible fevers with drenching sweats at night that would spike as high as 103. Severe joint pain pagues my body with stiffness so severe I can no longer move without excruciating pain. Depression sets in and I wonder how I could live like this.
What was going on?
After a visit to my rheumatologist I was diagnosed with Still's disease. It is not uncommon for a woman to be diagnosed with an autoimmune disease after birth as it turns out. Adult Stills disease is a rare type of arthritis that has a sore throat, salmon-colored rash and a high fever that spikes once or twice a day. Severe joint pain develops a few weeks after these initial signs and symptoms. Adult Still's disease is an inflammatory type of arthritis, similar to rheumatoid arthritis. This inflammation can destroy affected joints, particularly the wrists. This rare autoimmune disease effects 1 in 100,000 people. This was a chronic diagnosis. Life long, that's hard to wrap my mind around.
The chronic pain of rheumatoid arthritis and adjusting to a new life have been very difficult. There have been days i have been unable to walk. With 3 kids to care for and an illness to address I am exhausted. A baby is not conducive to a restfull sleep schedule. Doctors appointments, pharmacy visits, steroids, biologic subQ shots, infusion, pain management, and therapy have become part of my normal life. On bad days I'm thankful for the community of people with #chroniclife I have found online. They offer support, compassion and wisdom about this forgin life. My children can always save me from the sadness that comes with daily pain. I have been blessed with wonderful parents and a medical team that cares and listenes. I am still in pursuit of my personal medication cocktail that will take me into remission. 4 months ago I was able to achieve what I call controlled symptoms with significant less daily pain. My pain now is mild in comparison to that 6 months ago. Some days i have more pain but am able to cope. Most days I fear the future as this is not what I had imagined for my life. Some days I feel guilty of burdening those I love with my disease. Hopefully in time I will come to terms with my reality of having a chronic disease and find peace.

Exercise & inflamation

     While I have never enjoyed exercise to exercise, I have always loved sports. Before getting sick I played on an adult volleyball team. I have captained my own team & I love to play. I like to play basketball  and softball to. Also I have coached basketball & softball.
     These days I'm less active. Pain and instability keeps me from a lot of activities. A long walk suits me more at this moment in time. I like to explore new parks. While walking it gives me a chance to think & enjoy nature. I play h.o.r.s.e & dominate but it's not the same intensity as a game of basketball. Jumping and running are not suggested on these chronic legs. Falling is not fun.
     I hope to get my body to a place where I can possibly play volleyball again. Until then I will go for walks, play & dance with my kids for exercise. They say motion is lotions but no one talks of the pain it could cause. 
Exercise with care.

5 things I've learned since diagnosis

1) Patience
Before I got sick I was a very impatient person. Go ,go ,go-rush, rush...hurry, hurry. I walked around people in a hurry on the sidewalk. I passed people in my car. I got irritated waiting for others. This chroniclife really slows you down, especially when you can't move without pain. You wait to see your doctor.  You wait for scripts, wait for test results and wait to take pain meds.
While I still pass people on the freeway, I have a lot more patients now.
2) I've learned more about the body. After diagnosis I read and still do. I can't get enough info about my rare disease stills. *fact* Unlike other autioimmune diseases stills disease effects men & women equally.
3) I learned which foods lower inflamation in the body. There are several but some are: salmon, leafy greens, nuts, tumeric, garlic, ginger & tart cherries.
4) I now know that there are lots of people who live with daily chronic pain. I had no clue so many were suffering in silence.
5) More than anything else I've learned
I AM STRONG. The physical pain I've endured in the last year has been more intense than anything I've known. I have battled depression, body image, fear and loneliness in addition.
These are more challenges than I've ever fought simultaneously. I was never alone, God gave me stregnth.  I'm still battling but I know I'm strong enough to get through with God's help.

Tired of being tired.

What is there to say about being fatigued? You're tired?
Beat, Broken-down, Drained, Pooped, Worn-out, Exhausted, Spent, Tuckered-out?

It's the absence of energy. 

Mental, emotional  and physical exhaustion. 
Some days it's so extreme it feels like a task to pay attention or sit upright. 

 Here are a few images of how fatigue makes me feel.

How do I deal? Really, I don't know. I keep going because I have no choice. I attempt to pay attention, I nap, I drink caffeinated beverages, I take breaks, take deep breath or just hide myself away from the world. 

Walk in my shoes?

    As I wake I notice my body isn't right. Not suprising since my body hasn't been right since August 2014. Today I'm weak, in pain and super tired. Remind you, this is upon waking. My plans for working today are starting to disappear.  I can barley sit up to take my meds. I swallow my handful of pills and follow it with water I had by my bedside.
    There is no way I can work in this condition. Regrettably I call in sick. This is my first sick day this month. I know my boss understands, he has seen me at my worst. After all I had been at my job for 6 years prior to geting sick. I was committed to my job, took pride in it.  I've always had a good work ethic. The boss says to come in later if I can.
     One more task before I can close my eyes again but it's a tough one. Get kids off to school and care for the baby. My son has gotten himself up, ready and is about to leave. He is almost 13 and has been a huge help since I got sick. I wake my 8year old daughter and tell her it's time to get ready for school. She is a sleeper so she is difficult to get up. As I make her breakfast my head pounds with pain in my sholders.  Each time I life my arm I want to cry out in anguish. The baby wakes up and I collect him from his crib without screaming in pain. He needs a diaper change & milk.
       When my daughter leaves I'm hoping the babe's nap comes quickly. Mama needs to lie down. I settle on the couch and read a few books to the baby. I sing to him because my voice doesn't hurt. He starts to relax and I can almost taste the rest I desperately need. Awhile later he starts to fade and I lay him down. Finally I can rest this painful, fatigued body. As I close my eyes I'm hoping for a long rest and to wake refreshed with low pain.

Infusion exposé

In chronic life you get use to going to the doctor, taking handfuls of pills and daily pain. While needles don't bother me to much, they are never desired. Who wants to be stabbed right?
     I get a once a month infusion to manage rhumatoid disease. Well its actually stills disease which is a form of juvenile RA. Yes, that's correct- I have a juvenile disease.  I've been getting these infusions for about10 months & it takes about 2 hours each time. No doubt I have better things to do but I like to be able to walk so it's kinda necessary. 

When I first arrive (after check in) I take a seat outside oncology. At this office this is where all the infusions are done.  Once called back im seated & they check blood pressure, temperature and start an IV line.  This time has been exceptionally trying. 3 failed attempts to start the iv & an hour later we finally start the bio drugs. I will most certainly have major bruising at failed iv sites. I will have to explain that no, I haven't gotten in a car accident. I will be late home to cook dinner for my family.

They give me a warm blanket and a earl grey tea at my request as I wait for the drugs to get mixed. I get lost in my relaxing playlist made for infusions. After 2.5 hours my infusion machine is finally beeping that it's done. The medicine only takes 50 min but all the iv shinanagains.... I've been here long time. I'm tired and want to get home. I haven't been home since 9am when I went to work. 

     Infusions and or self injections are something I will have to do for the rest of my life. I have a chronic disease with no cure. I'm hopefull they may find a cure but right now this is my reality. I am so thankful this drug is working but it's a little depressing to be a 30somthing with these kind of medical needs.