Emergency room AGAIN

On Friday I had to go to the emergency room again!  What is going on with me???????????????  I wonder if I am under a tremendous amount of stress or am I developing a new problem? 

I started Friday with an appointment to see the cornea specialist.  I had to take a shuttle from University of Washington to downtown Seattle, it was raining.  Well, the specialist said my eyes were a little better and that the ulcers in my eyes were smaller.  He said that the PUK was a definite result of RA and that we needed a better medication for RA.  He started to tell me that I may need an infusion of more chemo drugs ( I can't remember the name) and methotrexate ( another chemo drug).  I feel like I am reeling, but OK.  I don't want to lose my eyesight and need my arthritis to be under control.

So I take the shuttle back to U of W for my RA appointment at 3:30, and it's raining and cold.  But, I felt fine, just fine.  I arrived just in time to check in and got to rest for a few minutes while waiting for the doctor.  I got to enjoy watching a new mom play with her baby, which was relaxing.  Had time to think about all that I am grateful for.  I really did make a valid effort to lower my stress and be "positive'.

My rheumatologist said that she was mildly concerned about me having vasculitis, was worried about  the PUK, and that the only measured successful treatments for PUK have been with methotrexate.  I told her that I did not tolerate methotrexate in the past, that it made me very nauseous and "toxic".  I told her I'd give it a try.  I asked her to go over the side effects with me (hair loss, nausea, weakness, liver damage).  GREAT, just what I need.  The last thing I want is more chemo when I had a complete response to chemo for Ovarian Cancer.  I am so so bummed.

She gave me three lab slips, said I needed a chest X-ray, needed tested for HIV and will need prophylactic treatments to prevent a specific type of pneumonia as well.  Grand.  On my way out I told her I felt a little nauseous.  Within 15 minutes I was violently ill with vomiting, diarrhea and severe abdominal pain.  The exact same thing I had last Friday and two other times before.

I eventually got admitted to the Emergency Room.  They took a gazillion viles of blood, did two chest and one abdominal x-ray, and pushed fluids.  They gave me Zofran and a few other drugs via the IV, but not until after the X-rays.  I lost a lot of fluids and was so so so so so so sick.  I was shaking like a leaf with chills from being dehydrated.  My lovely sister came and stayed with me until I was discharged around 2am.

During that time, my blood pressure kept dropping and the ER doc got nervous.  The gynecology oncology doctor "gynoc" on-call came to visit me in order to evaluate if I should be admitted.  The ER doc wanted me admitted but said it was up to the "gynoc". The "gynoc" was very thorough in his assessment.  He asked me everything about my Ovarian Cancer and Rheumatoid Arthritis history.  Unfortunately he could not justify admission, so he ordered some anti-nausea suppositories in case this episode happens again, and said we need to keep tracking this situation.  He said that he closely examined the X-rays and found no blockages or bleeds, nothing requiring surgery. 

So today I sit here nervous about having another episode, and wonder if I am too stressed to handle my current condition.  I wonder if I am unknowingly developing an aversion to certain foods.  I hate not knowing what is causing the vomiting.  I'm afraid to eat and just pray it doesn't happen again.

Next week I have two infusions to enhance my iron levels.  I look forward to that.  My sister and I agreed that I should not have multiple MD appointments on the same day, especially if they are at multiple locations.  I just can't handle all the activity. I love my sister so much for coming to the ER, so sweeeeeeeet.  I have such a supportive family.

I hope tomorrow is a better day.

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.