Poisoning Myself.

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Three days ago, after having Cromolyn Sodium in my cupboard for 19 weeks, I finally decided I was stable enough to add a new drug. Cromolyn was originally used as an inhaled anti-iflammatory to treat allergic- and exercise-induced asthma. The oral version of Cromolyn has been used more recently to treat mastocytosis and mast cell disorders. It is a liquid that comes in ampules and is mixed into water. The doctor who prescribed it for me is the same one that diagnosed me with MCAS, but he didn’t seem to know much about Cromolyn. The pharmacy knew nothing. I had to go online and ask the people in my mast cell Facebook group for details and then call the pharmacist and explain exactly what the drug was. I am so thankful for the knowledge of these groups and Cromolyn seemed to help far more people than it harmed. It also seemed pretty innocuous — I only talked to a few people who had major side effects and they were things I don’t typically experience, like itching and nausea.

Of course, there’s always a part of me that is looking for the magic pill. Imagine I started this drug and my mast cells calmed down and symptoms I didn’t even realise were caused by them disappeared! … But, it still took me almost 5 months to convince myself to take it. It wasn’t until my bowels went into hibernation that I decided to take the plunge. A few weeks ago, motility stopped, gastroparesis reared its ugly, bloated head and everything ceased functioning in my intestines. No movement, not even a fart, and mega doses of magnesium and vitamin C weren’t doing anything. Cromolyn can help these internal inflammation symptoms and I had high hopes.

The dose I was meant to take was eight ampules in a day — two 4 times a day. The doctor never mentioned to work up slowly and some people in my online group were able to start at full dose. I wanted to be careful because we’re talking about my ridiculously hyper-sensitive body, after all, but I was pretty confident that I’d be fine. So, the first day, I took 1/3 of an ampule in the morning. The next day, I took 2/3 of an ampule in the morning. All seemed fine, so, that night before bed, I took 3/4 of an ampule. At 5 in the morning, I woke up sick sick sick. So sick. Sicker than I’ve been in years, maybe. Sick like my original sickness. Malarial. Encephalo-. Shaking all over, chilled, sweating feverishly, head pounding, stiff neck, muscles cramping, throat constricted, barely able to lift my arm or walk to the bathroom. Oh god, the FEAR. I’d rather die than go back to this. I felt like an ex-con in a movie choosing death-by-cop rather than go back to jail. My mind was like a panicked, caged animal, looking for a way out, falling in and out of fever dreams where I was screaming for my mother over and over again. I’d rather the “nightly flu” that I used to get. I’d rather the ME monster that slams me down with massive, pummeling hands, but I now know will release me eventually if I hold very still for a while. I think I’d even rather be back in December, 2013, when I called on all of you angels to get me through what I thought might be permanent bedboundness.

I felt poisoned. There’s no other way to describe it. I took my temperature: 98.4 degrees. My blood pressure was 80/55 (normal for me). My blood sugar was 80. Not much I could do but wait it out. I lay in bed the whole day yesterday, meditating, deep breathing away the fear of permanent relapse to an acceptable distance. I have a painful burn on my hand that is taking a while to heal and I kept falling into dreams where the burn was causing sepsis. That’s what it felt like — a systemic infection — I’d wake up panting and quiet my mind. I’m good at doing that during waking hours, but, in my dreams… I’m always silently screaming.

I feel a bit better today, but still didn’t sleep. I haven’t had a headache in a long time, believe it or not, and the pain is brutal. My muscles are aching and I feel swollen. The fear has dissipated to frustration. I’m frustrated with myself for trying another drug. I was doing so well. I had a lot of firsts the last few weeks (I’ll post about that later, but here’s a teaser: first time in a store, first road trip, first time on a beach in two years!) and then I couldn’t leave well enough alone and trust that my body was slowly, but surely, helping itself. I’m frustrated with myself for not going slower. I could have ramped up the dose over a full month, but I’m always so impatient. I’m frustrated that I’ve lost the potential help of Cromolyn. That was probably the worst reaction I’ve ever had apart from anaphylaxis, so I’ll never touch it again. I’m not even willing to try again going much slower, so I’ll never know if it could have helped. And that makes me frustrated because it was so hard to get it and it’s incredibly expensive and it’s such a waste. I have a friend who can take it off my hands, but, if I ever wanted to try it again, I’m out of luck because I don’t have insurance to cover it anymore.

And, in contrast to how I feel now, I realise how well I was doing. I was managing to do things every day — stand in the kitchen and cook for an hour, have conversations easier, wash and dry my hair without a thought. This weekend we have one last stab at summer — two days of high 70s and low 80s — and I was going to surprise our friends Z and J by going to their house on Vashon Island for the first time in years. I felt strong enough to do it and that was not even an option 6 months ago. Instead, I’ll barely be moving this weekend. But at least I’ll barely be moving in the garden, in the sun.

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Another Day In The Life

This illness takes away every bit of independence and control. My day today was ludicrous and stressful. In my mind, it is filmed in high-speed to the Benny Hill Show music.

I made three back-to-back appointments (ophthalmologist, therapy and blood draw), which is obviously foolhardy, but, if my husband is going to come home to ferry me around, I want to maximise the time. However, I didn’t want the day to be longer than it needed to be because it takes such a toll on me, so I tried to schedule the appointments as close together as possible. The ophthalmologist’s office assured me 3 separate times (because I rescheduled 3 times and asked each time) that a 2:20pm appointment would have me out by 3pm because the doctor is exceedingly timely and expeditious. I google mapped the distances between clinics and called LabCorp to ask about parking and the name of the building and what floor they were on so I was completely prepared and wouldn’t be wasting time wandering.

But, first on the schedule this morning, our cleaning lady (a luxury we obviously can’t afford, but we decided we needed once in a while to alleviate the burden on my husband) was meant to arrive at 9am. That’s very early for me, so I had scheduled the day yesterday to do nothing but organise the house in short bursts (because you actually have to tidy the house for the cleaning lady): putting away clothes and paperwork, moving blankets, yoga mats and dog beds etc. with rests in between. It takes an extraordinary amount of energy for me to do this, mainly because it involves walking things from one room to the next and up and down stairs.

Our cleaning lady is scared of the dogs, so I locked them in my bedroom with me this morning and listened to them whine to get out for an hour and a half before I texted her. I got no answer until noon, when she said she would be here at 1:30pm. She wasn’t. And my husband wasn’t home by 2 to take me to my appointments, so I stood by the door, having eaten, showered, dressed and meditated, holding my handbag, unsure of what to do. He arrived shortly after, not too late, just late enough that I was anxious. We got the dogs’ leashes on (because we had to take them with us because we couldn’t leave them home with the cleaning lady) and I hid the key for her so she could get in while we were gone.

We drove like a bat out of hell, but traffic was worse than normal. Not terrible, just bad enough to make me anxious. I got there on time, but I was still sitting in the waiting room 35 minutes later, so I had to reschedule. They said I could come back after therapy at 4pm, but the blood draw was at 4:15, so I had to reschedule that, too– to 5pm, their latest slot.

On the short drive to the therapist’s office, I was starving, as usual, so I quickly ate an apple and a bunch of plantain chips. Then I had to stand in line at reception for a full 10 minutes (exhausting) and then sat in the waiting room for another 10 minutes, wishing I had taken my time eating rather than inhaling without chewing. By the time my therapist came to get me, it was 3:15pm — not too late, just late enough to make me anxious about the appointment going over time and thus causing me to be late for my rescheduled ophthalmology visit.

I was close to tears from watching the time tick by, the stress of the day, rushing around, not being able to drive myself, being let down by cleaning lady, husband, receptionist, late doctor #1 and #2, having to schedule these appointments in the first place, having to schedule them close together because I can’t handle long outings, having to reschedule 2 out of 3 of them, trusting the ophthalmologist clinic that said 40 minutes would be enough time when I know better… so, I spent 3/4 of my therapy session ranting about the day and how frustrating it is to have no independence… and then ranting about how the day’s events were impinging on my precious therapy time! I have shrinking to do, dammit.

Of course, therapy ran late, so we drove like a bat out of hell again to the ophthalmologist, got there at 4:10 aaannnd… at 4:50pm, I was still waiting in the waiting room. Of course. So I had to call the lab and completely cancel the blood draw. What a farce!

The good news is, the different pressures in my eyes seem to have resolved, so I’m no longer considered a glaucoma suspect. The doctor wants me to try Restasis for the next 6+ months, plus steroid eye drops to address the ongoing dry eye/blepharitis/lid muscle spasms/styes/grittiness/goopiness/floaters/blury vision. Yay, more prescriptions and protocols!

Through all of this, my long-suffering husband and dogs waited in the car, but, the other good news is, he took them to the park while I was in therapy and we got to come home to a beautiful, clean home.

And then I got to do this:

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Aaaahhhhh…. take me away…. 🙂