I like to think that I was given the gift of chronic illness because without it I would be an unstoppable, strong-willed force to be reckoned with and the world probably couldn’t handle that. I needed to be toned down a bit (feel my sarcastic vibes, universe). This shit really messes with plans… And I am the ultimate planner. Whether I stick with it or not, I just always need a plan. I know life is going to throw out wrenches here and there and I have become pretty resilient when it comes to getting knocked down and having to get back up and plan again. (Can you feel my ego through the wifi today?)
Anyways. Feeling a bit knocked on my ass today… I got a stomach bug from my sweet babies and have been reenacting The Exorcist since last night. Set backs with my health always throw me into a bit of downward spiral. I’m feeling extra defeated because my neuro and I decided to try weaning me off of my biweekly Lactated Ringer’s infusions. We cut down to once per week for a month and I did have to be more vigilant about checking my vitals and staying on top of meds and fluids but overall I felt pretty good – I started taking small HIKES with my kiddos. So last Wednesday was my final infusion before going to PRN, as needed, status. The week went well until bam… haven’t been able to keep anything down since last night. I decided to not be stubborn and call for my nurse to come out today and I’m currently getting pumped up. I’m scheduled for another bag tomorrow since my vitals are crappy and I’m having pre-syncope symptoms.
Why did my neuro and I decide to do a trial of no IV infusions when I was doing so well on them…? A few reasons. I continue to be very hesitant about having a chest port implanted but my arm veins are starting to build up scar tissue and blow pretty frequently. This trial would let us know if I still really need the infusions or if my body can function a bit better without them after having a year of them relieving some physical stress. If it seems I still need them regularly, I will agree to the port. If I do okay without them then we haven’t done an unnecessary medical procedure.
The other reason I really wanted to test how I’d do without my IVs is because I will be losing my medical insurance eventually. My children’s father lives in Europe and has for the last year and a half. We’ve been separated for awhile but I am still covered under his insurance, which pays for nearly everything. My infusions alone cost over $3,000 per month and that is not something I’d be able to cover. I will need to go back to work in order to get some decent insurance and pay our bills.
When I’m feeling pretty good and not having flares, I think, “Hell yeah I can do this by myself!” I can work, get the kids to school, put them in an after school program, pick them up, do homework, cook, clean, grocery shop, get them to sports practices and games, keep up with my medical appointments, take care of myself, and sleep somewhere in there. Of course I can rock that shit. But then I really sit down and think about how often my kids are sick and then how often I get sick on top of the dysautonomia and there’s no way I could hold a steady job with how much I’d have to call out. There’s no way I could keep up that insane pace and not have a major crash or mental breakdown. Single moms who aren’t chronically ill have a hell of a time doing it all… I’m insane to think I could do it. On top of all of that, I desperately want to go back to school. I do have family who always steps in when I need help but the day in, day out is just me. Their father will never be around. And that stubbornness in me doesn’t want to depend on anyone ever again – that’s part of what got me into this mess. Flares make me less of a dreamer and more of a “realist”.
On the bright side though, my hematologist released me for a year. My hematocrit and hemoglobin have fallen steadily since I got sick and he was starting to get concerned. He was going to schedule a bone marrow biopsy if my levels fell any further at my check last month BUT they went up slightly. The hematology junk will always be in the back of my mind but he’s been a very vigilant and throrough doctor for the last year and a half and I trust his opinion.
To end this entry on another positive note – I have gained over 15 pounds since this time last year. I was fighting so hard to stay above 100 pounds and now I am only 5-6 lbs from my pre-sick weight. My joints are murdering me right now so off I go to take a Tylenol and pray that that sucker stays down. Ever puked one? Ew.