Searching for some kind of balance

Good morning.  My sister and her husband returned last night from a glorious vacation on La Isla Mueheres.  The islands are located off the beautiful coast of Cancun Mexico.  They returned home with bright smiles, relaxed postures, beaming energy and tans.  Well, what a blessing for them.  They deserved it.  They went with a group of friends to celebrate one's 50th birthday and also personally celebrating 20 years of wedding bliss.

For me, this past week was another health nightmare, and I'm really tired of them.  I think I had noted previously having a severe RA flare.  Well my RAdoc put me on 30 mg of prednisone per day, scheduled to taper down in dosage over the next few weeks.  Because my eyes were also severely inflamed, red, dry, painful etc, I was also referred to an opthamologist.

Last Wed I saw an opthamologist who said she was concerned about my cornea.  I should have anticipated that they would dilate my eyes, but didn't, so I wasn't prepared for THAT!  Anyway, I was prescribed antibiotic eyedrops and referred to a cornea specialist. 

Two days later (FRIDAY) I was seen by a cornea specialist who said I have PUK (peripheral ulcerative keratitis).  WHAT?  He scared the hell out of me because he said my corneas could rupture if I don't get my arthritis under control.

Generally, your cornea is connected to the eye by collagen.  My RA is attacking my collagen and that includes the collagen around my cornea.  So in his valiant attempt to minimize the risk, he also prescribed an antibiotic for my eyes, because he saw a mild infection as well.

The cornea specialist prescribed Doxycycline and an antibiotic eye ointment. 

On Friday, in order to see the specialist downtown, I needed to drive to the SCCA, and take a cab to the eye clinic.  So by the time it was all done, I was gone from noon to 6:30 pm for one medical appointment.  What a day.

I was instructed to take Doxycycline with food.  I had soup, bread, one dose of Dox at 7pm.  By 7:45pm,  I was violently ill, throwing up, diahrea until 1am.  It was absolutely the most miserable condition.  I think I ruptured something in my nose from all the pressure.  I was so sick.

My mom tried to get ahold of all kinds of doctors, nobody available, and when she finally did get ahold of someone, he was rude.

I wound up in the ER on Saturday because of bloody stools.  I was diagnosed with a brief GI bleed, idiosyncratic gastritis and given fluids, pain meds and pepcid via IV.  The ER staff were nice and calming, and sent me home after four hours.  I will never take Doxycycline again, ever!!!!!!!!!!!!!!!

The past few days have consisted of trying to drink, eat litte amounts of food, and play administrator for my doctors.  I say administrator because the eye clinics and ER are not part of my main medical system at University of Washington. So I have to be the one to get records to them from outside doctors, sigh.

I am feeling better, but this is not over.  I still need to get my RA and eye condition resolved, and to be honest, really don't want to go on a bazillion appointments this week.  When I feel like this I have to remember to be gracious and thankful, as someone like me has no insurance and has no appointments.

I just am trying to say that it is frustrating, I am surviving deadly Ovarian Cancer, and my body is still falling apart.  I have not had time or ability to celebrate.  I want simplicity, no pain, to be able to exercise and have a little fun.  When will that happen, ever?  I just want to start enjoying life a little bit, that's all.

The value of our health

Today I'm starting high doses of prednisone to thwart a severe arthritic flare. 30mg per day for a week, then go down from there.  I guess I can't worry about side effects, I'm here on earth, and that's enough for now.

I have been in so much pain, and I wonder how it is that I fight off cancer and now have to deal with more arthritis.  A part of me was hoping my RA would magically disappear when I was receiving chemo.  No such luck.

It is just so amazing to me that those of us with health struggles get through our days.  What gives us the strength to continue?  All I want for my mom with diabetes is for her to be able to run in the sun, play on the beach, laugh, and enjoy a wonderful meal.  My sister has food allergies, so every meal is met with careful planning, why?  Why is my aunt burdened with RA?  Why my uncle with diabetes?  Why another uncle with cancer? 

I believe it is not for us to ask "why" as God has a plan.  Yesterday as I was coming back from the cancer center with my mega prescription of prednisone, I was finding I needed again to look for the lining, that golden beam of light that assures me that no matter what we are given, we will prevail in the end.  All we need to do is have faith.

So that's what I do, I pray.  I have faith that God places all of us together in a certain way to support each other, to inspire each other, to carry each other, to love one another.

So all I can do is give my love when I am in pain.  I give my prayers, as prayers do not require my hands, but instead my heart and soul.

Anger and pain

This morning every joint in my body hurts.  It hurt to slice a banana.  I could barely get out of bed.  My hands and ankles are swollen, my neck hurts, my knees hurt, my feet hurt, my right hip hurts. 

I wonder about anger and it's relationship to disease.  I got so angry yesterday.  Plus, I spent more time than usual on the computer trying to find photos for facebook, which may be why my shoulders and shoulder blades and hands hurt.  I have no idea.  All I do know is that stress is bad for arthritis and it's very bad for cancer.

I am really flaring and everything hurts.  I called the rheumatology clinic to see if they can see me earlier than October (geez).  A nurse is scheduled to call me back, I'll hope for the best.

I can't deal with this kind of pain all over, I just can't.  I don't want to spend the rest of my days in so much pain that I can't wring out a wash cloth to wash my face.  I want to get outside, walk, do yoga, get stronger. 

I want my cancer recovery to be full of excitement and happiness, not arthritic pain.  I hope we can tame this soon.  I just have to be hopeful.

I also need to get back to church every week.  I haven't been able to go regularly.  I miss God's spiritual nurturing.  I have been afraid of getting sick in church, so I haven't gone.  Going to church helps me have more patience, helps me to tame anger.

My body cannot afford for me to have angry emotions.  I need happy emotions.  I need those endorphins.

Well, that's all for today.  Surgery tomorrow.  Should go well.  Thanks for reading.