I took this photo from the passenger seat of our car one morning on the way to the University Hospital upstate. This shot turned out to be our last trip up although we didn’t know it at the time. We drove up for 3 consecutive days each month so I could get IVIG and solumedrol infusions. The infusions were long (8+hours) and they really made me feel sick. The headaches that I got while sitting in the infusion chair were some of the worst I’ve had. Looking back on that time in my life it was so crazy that for the most part I don’t think I really acknowledged the levity of the situation; just how sick I really was. I went from a walker to a cane so I knew the IVIG was helping me. I was carrying an extra 80+ pounds on me from the steroids and the water retention I battled constantly. I remember being stretched so tight that my legs would actually rip open. In the moment; in all the moments over the years, I think my brain sets itself to daily survival-mode and not really thinking that far into the future of what-ifs and what-could-happens. After this last trip up I got really sick. My brain and spinal chord swelled and I ended up in the hospital. I ‘woke up’ on the third day there but it turns out I wasn’t sleeping, I was awake but didn’t know it. Big C told me that it was like I was there but not there. So when I ‘woke up’ I was sitting up and suddenly I said, whoa! It’s really bright in here! And he told the nurses I was back. When I think about it, it just seems like a dream to me. And even though it’s scary as hell, it feels like it happened to someone else.
I had a moment when we were driving up and I took this particular shot. I remember it. My first thought was wow, cool shot! Haha! Got it on an iPhone too. 🙂 Then I was thinking ‘this is my life’. I remember that. A sudden burst of reality. I am sick. I’m still me but a whole new different me. A me that gets up at the crack of dawn to drive to a hospital, not to go to work. I’m in the chair. I’m not attending to a patient, I AM the patient. A moment of pure clarity while I aimed my phone at the sunrise.
On that day I was 5 years sick. You’d think I would have realized this already, right? I think with chronic illness comes so many different emotions, constantly changing, that sometimes you don’t know if you’re upside down or right side up. Epiphanies hit you like a brick in the face and then fade away leaving you open and surprised when another moment hits you. You really do find out who you are somewhere in the chronic journey. Whether you like it or not, you’re a fighter.
I get the weirdest spam on this blog. There’s tons that are just gobbledy-gook like a cat ran down the keyboard and here in there in the mix are some smut words. Other times there is a paragraph of nonsense. Makes me laugh as I go through them. Here’s one
I’ve been searching for some time for one high-quality content articles with regards to this unique topic . Doing research in Yahoo I lastly encountered this site. After reading this post So i’m glad to pronounce that I get a wonderful impression I came across whatever I was looking for. For certain i will ensure to don’t forget this website and visit consistently.
It reminds me of grade school when the teachers gave you your first ‘real’ writing assignment and it has to be x amount of words. Lookout thesaurus! I’m gonna throw in as many descriptive words as I can get away with for describing the waters George Washington was crossing. A for effort to the spammer above, although it was probably just computer generated.
Life is still the same as it’s been all Summer, except now it’s Fall. I’ve been battling depression and trying to fake it ’til I make it. It a motto Big C and I stand by and I try really hard. But lately, I’ve been mopey. I had my infusions last week. My ‘head pain’ came back and my rheumy threatened to pull the plug. I whipped on my shades and then proceeded to cry like a baby in front of all the other infusees. He said it was too dangerous, chance of me having a stroke. Huh? I sure didn’t read that anywhere. So C and I pretty much begged. The infusion nurses, who btw are saints, suggested I take an oral toradol added to my pre-meds, and then IV toradol at the end of the day. This being what stopped my head from exploding in the ER the month before. He agreed and put it the order and the next morning I showed up just praying, praying for no pressure that ultimately turns into the head pain. I took my pre-meds, tylenol, benadryl, and toradol along with my regular pain meds and sat back in the chair and prayed. The infusion nurse chatted as she hooked up my IV and I prayed silently some more. Well, before they hang the bag of immunoglobulins, they hang a bag of solu-medrol as part of my pre-med package. It’s like liquid prednisone (yuck) I feel fatter just thinking about it. Anyway, as soon as the drip started my head started to swell with incredible pressure. It’s the solu-medrol not the IVIG!! I was so happy!! I can continue with the infusions! And that’s when I found out my rheumy decreased my dose this time as a precaution. He told me it’s the least amount he could give me without stepping in to the non-therapeutic range. Well-it’s been over a week, and I’m not feeling better like I did last time. I was SO looking forward to that well-floating-in-a-cloud-back-to-healthy-feeling. It’s not coming and I’ve got the pity party blues.
I’ve got to get into the shower, pull up my bootstraps and fake it ’til I make it. Woot! Or, I could stay in bed and scrap. That sounds good too. I’ve got tons of new graphics just waiting to be pieced together around my beautiful family. I’m thinking I’m going to choose the latter. As a matter of face, I already chose =)
Until next time
Picture above: I got that shot on the way to the hospital’s infusion center in a moving car. It came out pretty good considering, but I tossed it into Picnik and did some heavy duty editing with all the goodies they have. =)