Hard Decisions

<Sigh>

Ok. I’ve been holding off on providing a new update since I’m waiting to get an update myself. Truthfully, I don’t know if I want to know anymore.

The only way for you to fully grasp my recent days is for me to just begin at the beginning….

Let’s go back to Sunday, Feb 10th shall we?  Both of our home computers quit. Caput. My little one, my best friend, got hit by electro shock I think and shorted out. The big one, Terry’s computer, just kept cycling through shut down, reboot, etc.

Monday, Feb 11th, I went to work and I just didn’t feel right. My chest hurt.  BUT… my chest has been hurting a lot lately.  I originally thought it was indigestion. I put a post on my FSGS Support site about my symptoms and got a hit.  A woman wrote me to say her son had the same symptoms and had also been taking Cyclo. Turned out, he had Pancreatitis. Monday passed.

Tuesday, Feb 12, I got up and felt like I was breathing through a straw. My chest hurt and a cough had sprang into action. I went to work, but called Dr. Hokey. They worked me in that afternoon. I called Terry so he could take me. Well, Terry picked me up, but he said he wasn’t feeling well. He was having nausea and diahrrea. GREAT, I thought. We got to the Doctor’s Office and I went in. Terry waited outside. Dr. Hokey, who will from now on be affectionately referred to as Dr. Hospital..did just that. He put me in the HOSPITAL.

I was supposed to go in for 24 hour observation, but it turned into three days, a line of oxygen, three bags of Levoquin and pneumonia.

They had to call the IV team to get the IV because they couldn’t find a vein. Once they got me bleeding, they couldn’t get it to stop.  I actually didn’t realize I had so much blood on the hospital gown and couldn’t figure out why the Staff Social Worker turned pale and left. I glanced down to make sure I was properly covered and saw all the blood.

Then I got two shots in the abdomen which bruised like hell.

I got out on Thursday, Feb 14th - Valentine’s Day.  The day I got out, I got Terry’s stomach virus. I spent one half of Valentine’s Day in the hospital and the other half in the bathroom with vomiting and diarrhea.

Let’s move forward to Friday, Feb 15th.  I got a call from Dr. Asshole’s office. (He’s really a super guy - I shouldn’t call him that) I thought they were calling because they found out I was in the hospital, but they weren’t.  The nurse called because she needed me to fill out an application and sign a release form for Cellcept. CELLCEPT.

<Brief pause to cry)

When I was diagnosed a year ago, the doctor said that there were three options.  Remission.  Dialysis.  And transplantation.  When I asked how we could get the disease into remission he said there were three drugs that we could “try” – Prednisone. Cyclosporine and Cellcept. There is another med, Rituxan or Rituximab, but it’s not widely used and I don’t even know if it is FDA approved yet.

Anyway, Cellcept is known to cause certain cancers such as Lymphoma. It also has a lot of ugly side effects too but I’m more concerned with the cancer possibility since Cancer is so prevalent in my family.  Think about this….my grandmother died of colon cancer. My grandfather died of liver cancer.  An aunt had breast cancer. Another aunt died of brain cancer. My sister died of brain cancer. And my father died of myeloma or a blood / bone cancer.

<Another brief moment to cry)

I was still sick with the stomach virus and pnuemonia through the whole weekend.  Not to mention the chest pain was really bad and I wasn’t sleeping at night. I called the doctor.  He told me I was rushing it. To rest. To take all of my meds and go to the ER if it got worse. Since,  I wasn’t released to return to work yet, I texted my boss on Monday, Feb 18th to let him know I wouldn’t be in. He texted me back and says, “Call me.”

I call him and he says, “Eve, I can’t do this anymore. I’m really sorry, but I have to hire a temp. When you come back, you can train him/her for a few weeks.”

I had to hang up on my boss. I was racked with sobs. I wailed.  For hours. I cried ALL day Monday, Tuesday and probably half of Wednesday.

Now before you get all pissed off at my boss. DON’T.  He’s really a good man.  I’ve been in the hospital 5 times in less than one year and he’s been to see me all of those times, but one. I’ve had over 25 Neph visits, over 25 lab tests and enough meds to sedate an elephant, all in less than one year. I’ve been out A LOT.  He’s brought food to my home. He’s called and offered me both emotional and spiritual support. He’s remained positive while I sobbed like an idiot.  He has been more than understanding and supportive.That fact is, I have a disease, yes. But they have a business to run.

I thought back to my meeting with HR in September when I went out on Short Term Disability. My rep encouraged me to go out on full disability then, but I didn’t listen.  I was determined to keep going. I thought I just needed time to switch meds, recuperate, BUT most of all, I think I was in denial.

So this week, Terry and I made a huge decision.  HUGE.  I’m going to go out on Short Term Disability (AGAIN) and apply for SSI.

The follow up to my hospital stay was scheduled for Thursday, Feb 21st. We went to see Dr. Hospital.  We told him that I was going to have to apply for SSI and he basically told me that whatever I need, I have. Big relief for me.

I’m supposed to meet with Dr. Asshole on Tuesday, Feb 26th. I hope that appointment goes well.