Where have you been?
Sometimes in life you face things that are scary and then sometimes you face things that are really scary. These past three weeks I've been MIA from blogging because I've been in one of those really scary places. I really believe I was walking through the valley of the shadow of death. I was there but I wasn't camping out. I was doing my best to move through.
Being on both Prednisone and Benlysta, I basically have no immune system, which means I have no ability to fight off foreign invaders or any illnesses. That's bad enough for the normal person, but when you have as many kids as we have and when you're primary source of income is from being a nurse and dealing with sick people all of the time, that means I'm constantly walking through a minefield.
Whenever I get my Benlysta infusion, they always ask if I've been sick or been on antibiotics because if I have then I can't have my infusion. Benlysta itself really doesn't have horrible side effects, but the main cause of death related to being on it is infection. And that's because like I just explained.... being immunocompromised, if you catch a little infection, it's not a little infection. It's like you're back in colonial times when they were being exposed to all kinds of new diseases and were dying by the bucket-fulls from plagues.
So this last time I went for my infusion, I wasn't feeling fantastic but I thought it was more because it was shortly after I was trying to recover from having been in the hospital with the new migraines and all the new medications and whatnot. It was a few weeks of constant headaches and nausea, so I was just just feeling crappy. But I didn't think more of it than that. Little did I know, I must have had something more than that brewing at the time of the infusion because within just a few short hours after I came home, I was in trouble.
It started with just a little tickle in my nose that made me wonder, is that allergies or am I getting a cold? Within an hour, I was full-blown sick. Within one hour, my sinuses were clogged, my throat was aching, my left ear started throbbing & then clogged shut, then my right ear did the same, then I developed bronchitis. No kidding, within ONE HOUR. Bam. I was down. In writing you may not be able to appreciate how scary it was, but it was exactly that. Scary. And painful. I called the on-call physician and told him about it. He told me to monitor overnight & watch my temperature. I had some leftover penicillin in the medicine cabinet so I didn't even wait, I started it immediately. When I called him the next day to tell him it was only getting worse, he sent me to the doctor where I was put on more antibiotics.
Fast forward a week and nothing was getting better, only worse. I was still working because I had to. I have no sick time left and so I have to be there if I want to pay my rent. Needless to say, even though it was necessary, it was till stupid. I had my follow up with the doctor on Monday and when she walked into the room, if you can picture me white as a sheet, broken out in a cold sweat, lips purple/blue and short of breath, leaning/propped against the wall, you can probably get an accurate picture of of what she was seeing when she said, "Oh my God! What is wrong with you?" I explained to her that I still didn't feel good and she immediately sent me off for more lab work and a chest xray. Diagnosis: double ear infection, sinus infection, bronchitis and now pneumonia.
Yep, nothing was getting better and now I also had pneumonia. Scary. This is the stuff people with no immune systems die from. I was given shots of antibiotics in my butt, more to take by mouth, nasal sprays, cough syrups, yada yada yada and told that if in 48 hours my fever continued to go over 100.4 degrees, I was to report to the hospital. Luckily, 48 hours later, my temperature teetered right around 100 or 100.2 but it wasn't 100.4. Actually, there was a point where I came home from work and my temp had gone back up. My friend Allison asked if I should go to the hospital and I responded, "No way!" And she said, "Let me rephrase that, would your DOCTOR say you should go to the hospital?" "Probably," I said. I just can't miss work! Doesn't that suck? That we have to make the choice between paying our bills and being healthy? Totally sucks.
Anyways, three weeks later, I still can barely hear anything out of my right ear and I'm still pretty weak. But I feel considerably better and I'm definitely over the hump. For the time being, they've put my Benlysta on hold until I'm infection and antibiotic free for at least 10 days because I was just too depleted and in danger/vulnerable. That was a very scary place to be. I'm too young for my children to be orphaned. I'm doing every single thing I'm supposed to be doing...I'm taking my medications (even that stupid-make-me-fat prednisone), go to all of my appointments, etc. I ended up crying out to God for mercy. I've had enough for a while. Not more than I can handle, remember? Well I had really approached that limit. I need a merciful break Lord, please. PLEASE. Enough for a little while, please. PLEASE.
Needless to say, I'm back! I have a lot to say that I just didn't feel like typing in the past three weeks! So there will probably be a lot of posts in the next several days. It's good to be back. What do you think of the new blog look?
lurve you, xoxo v.