The Prednisone Diaries

Me, the entire time I was on this drug. Only I didn't have the fat.

Prednisone is a steroid. You may be familiar with it if you have asthma, allergies, ear infections, etc., but I guarantee you've only had the smaller daily dose packs. I had five days of 100mg through IV, and then I started a 12 day oral taper - 2 60mg doses, 2 50mg doses, 2 40mg, etc. It effectively cleared the swelling and fluid on my optic nerve, and the near total blindness in my right eye is slowly, slowly improving. I can now see movement and count fingers, but still can't see screens/books/faces clearly or read, and there's still one spot that is totally blind in the center of my vision. Comparatively from where I was at when I was admitted to the hospital, I'm okay with this. Partial blindness has only restricted me very little, because my champ of a left eye decided to regain 20/20 vision when the right went out. I just can't do stairs, my depth perception is screwed, and I can't drive. My neuro-opthamologist is confident, however, that I can regain 80-90% of my normal vision, with a chance of a possible complete recovery. It just takes time, as once the nerve begins to heal, vision itself is delayed by a week or so. Something something eyeball magic.

My IV injections of the prednisone never really caused any immediate horrible side effects that I noticed, or maybe the steroids just had to build up in my body first. Sleep was the first big disruption. When I could get it, I would wake up within hours of falling asleep wide awake, and sometimes panicked. Then came the hot flashes. Now this is a typical woman thing later in life, but I can honestly say at 26 I'd never experienced this before so I really didn't understand what was happening. I just thought the temperature in my hospital room fluctuated a lot. Then my blood pressure began to climb to pretty high levels. When I went home I was on the third day of my oral taper; my doc prescribed a very small dose of a diuretic to help keep it under control, and wrote a referral to a nephrologist to see if we couldn't investigate the cause (I've always had readings that some docs and nurses consider "a little high" when it came to BP). That night I slept rough again, but when I woke up the next morning I felt fine. I felt great. I wanted to try and get out of the house a little, after being cooped up in the hospital and mostly in bed for over a week. And then I took that day's dose of prednisone and my other medications.

Day 4 of the oral taper is when it began hitting me, full tilt. Hard. Things went rapidly downhill after I took my medication that morning, and after that every day on the steroids was a total challenge. I battled nausea and other stomach pain, which made eating difficult. I made it three full days at home before returning to the ER on the fourth, tachycardic, panicked, and with a high blood pressure that was not being managed. The steroids had increased my anxiety - it felt like I'd consumed about 10 cups of coffee, all the time - and I'd begun having panic attacks in my sleep, which would wake me up in a panic, and the vicious cycle never stopped. The ER doctor gave me an IV dose of Valium and sent me home with a low dose of a beta blocker to help the anxiety. While this cured my physical symptoms, it did nothing for the root cause, and by Sunday I was calling my regular doctor to go back in for another medication readjustment. From then on, the new medication and the decreasing doses helped the severity of the side effects, but I can safely say I do not enjoy steroids and I was never happier than the day I took my last dose. In fact, we went out for dinner that night to Koi. I had a waygu steak and it was glorious (my stomach didn't like it so much the next day, but I was sort of okay with the trade off).

Now that I've been off of the steroids for a glorious six days, my BP is finally coming back under control and I've come off of most of the medication I was on to keep it managed. I haven't had anymore tachycardic episodes either, and my hot flashes are gone. My sleep patterns are finally starting to return to semi-normal, in that I can at least sleep a solid amount, not wake up panicked, and still feel refreshed. I'm still battling a bit of daytime fatigue, though whether that's from the MS or from the massive amount of medications I've been on through this is anyone's guess. It probably also has a lot to do with not sleeping well for a good while. My anxiety is greatly improved, and if I do feel panicked, I can usually manage it before it gets out of control, but I've had less and less of those episodes daily - some days, not at all.

Another weird mental side effect of all of this was the total disconnect I suddenly felt from my own body. It was horrible feeling like I wasn't in charge of any of it, and like a totally different person. A positive side effect was that by the time I'd come off of the steroids, I'd lost 20lbs from where I was when I went into the hospital. That much weight loss that rapidly, and all of the other fun things that came along with the medicines, made me feel like a stranger in my own skin. Not to mention being diagnosed with a disease that is both unknown in cause and has no cure. I asked the doctor after being diagnosed, before I truly understood what MS was, if I had caused this in some way. He reassured me that lifestyle wasn't the cause, but that didn't help the feeling that I had, in some way, done this to myself. Then I began questioning why my body hated me so much. I've had a lot of back and forth in coming to terms with this, and I'm not sure I'm even quite there yet, but I'm better now. So much better. I feel more like myself, I feel relatively healthier, I feel more like a functional human being.

It helps that yesterday I overcame another big hurdle on my MS journey. My doctor and I had a long discussion when I was in the hospital about the various disease-modifying treatments available to help in reducing relapses. We decided that Gilenya (Fingolimod) was the right way to go. Unlike some MS treatments, it's a once daily oral pill. A lot of others are injections, or had side effects that I didn't like the idea of. Gilenya has a high success rate in dropping MS relapses by half, and from what I've been reading on it from people who take it, many have had few, if any relapses since beginning it. I'm optimistic that on it, I will be able to continue carrying on just like I did before we discovered this. The big hurdle I'm referring to is that Gilenya causes a decrease in heart rate in some people, so after taking the first dose, you have to be on a heart monitor for six hours to make sure that it doesn't drop dangerously low. I took my first dose yesterday and passed with flying colors - my heart rate never dropped below 70, and the EKG I had afterwards showed that my heart is in great condition, which means that I can now continue on my own.

So now I'm on the right track. My medications are all in order and I've got a great team of doctors behind me that I feel totally confident in. I couldn't ask for a better situation, and I'm counting my blessings that things are finally beginning to go smoothly. I'd like to take a moment here to thank everyone for the messages, good wishes, thoughts, and prayers that have been directed my way over the past couple of weeks. I can't tell you how much it all meant to me, and how much all of the funny pet videos helped me get through even the very worst of days. It kept me laughing and smiling no matter how bad I felt. You've all contributed, in no small way, in getting me here to where I am today, comfortable and healthy enough to write this blog to finally shed some light on what's been going on. I love you all.

Keeping a Promise

Sometime near the end of my hospital stay, I was taken back to the eye clinic for new scans to determine how my eye was clearing up. With optic neuritis, the swelling and fluid on the nerve will go down before vision returns, so though I'd had a very small increase in visibility, the doctor wanted to see just how effective the steroids were in treating the cause (very effective, it turns out). Transport came up to my room and fetched me, because the clinic is a long way across from the main hospital, and set me up with a wheelchair and a blanket and off we went. When we got there there was a little confusion about why I was there and who had sent me because the orders hadn't come through yet, so they put me in the waiting room while they straightened things out.

As they wheeled me in, I noticed a young, beautiful Emirati girl sitting in there behind big sunglasses. She had on a gorgeously embellished but simple abaya and shellah, and I was pretty sure her shoes were designer. She was impeccably dressed. I smiled at her and she smiled back, and then they parked my chair across from where she was sitting and left us alone. Now, I was an absolute mess after being in the hospital for a week plus, and my bad eye was frustrating me, so I kinda sat with my head in my hand to cover it, wrapped in my hospital blanket because the clinic was freezing. I wished I'd brought my phone or my tablet with me for something to do. I'm not usually one to just openly talk to some person unless they address me first, and I didn't know if the girl wanted to be left alone because it was a doctor's waiting office and you just never really know. It's kind of an awkward place to chat people up.

CNN was on the television in the waiting room, and they began running some ISIS related story. I cringed internally and half paid attention to the TV (watching TV at that point was still an exercise in frustration) and what they were saying when I heard a very quiet "This is so sad, isn't it?"

Surprised, I looked up to face the girl and realized she was talking to me. When I agreed that it was, in fact, incredibly sad, she suddenly opened up and bared her soul. "It's so sad. It has to be stopped. What they are doing, it is not right." She continued, talking about how ISIS was presenting a terrible representation of Islam to the rest of the world, and then she said, "And it affects how they see us as people. I hope they do not see all of us like that, we are not all murders, we are peaceful people."

I thought about all of the backlash and ugliness in the US against Muslims recently (this was even before the San Bernandino shooting), and I nearly wept right there in the waiting room. It broke my heart.

All I could do was assure her that there were people out there who did not see all Muslims as bad people, that there were people that understood, and that I was one of them - that I understood that Islam is a peaceful religion practiced every day by millions of people, that I have lived beside them for a year and a half and knew that they were just normal everyday people with kind and giving hearts who were trying to live their lives like everyone else - only in a manner different from ours, and with a different name for God.

The conversation switched at that point, and she introduced herself after I told her I liked her shoes (Jimmy Choos, of course). She told me all about how she'd had a nasty infection in her eye and how it had affected her sight, and I told her about losing mine. She talked about how something like that really changes your perspective on life and makes you think. She told me about her family, and how she has a little brother who she wasn't able to hold and play with because she was afraid of transferring her virus. I told her how I came to be in the hospital, and about being diagnosed with MS.

We talked for several minutes, chatting about anything and everything (she talked about Friends - she liked my name because Monica was her favorite character) before the imaging tech came to fetch me, and then we wished each other luck as we said goodbye. She was gone when I was done with my scans, and I didn't see her again.

But I held a silent, secret, unspoken promise to her close to my heart as I was wheeled back to my room in the main hospital. I would tell people about her wish and the talk we'd had. I would share my own wonderful experiences living among a Muslim population, a peaceful population, in a place where I have felt more safe at times than I have living in the US. I would work to change hearts and minds who view all Muslims as terrorists, murders, rapists, who make value judgments against an entire people because of the actions of a few radical extremists. I would no longer remain silent, as I have, hoping not to incite arguments, when they were attacked. I would become their defender.

I implore anyone who reads this to sit and think, really think, about the way you view the world and its people. All it takes is one small moment to change someone's mind, one kind person. Just as all it takes to ruin something is one awful person, one bad experience. Yet we can't simply judge an entire people on the actions of a few. It's not fair to the quiet, peaceful people who are just trying to live their lives day to day like you and I. I know the counterarguments. I know it happens on both sides. This is just as much a plea to them as it is to you, that they would reach out and give a Westerner a chance just like this girl did for me. Maybe if we all were a little humbled and sat down to talk, things would get better. We would see we're not so different after all.

Through the Looking Glass

This is a difficult post to write. I'm pretty sure all of my next few posts are going to be like this, but for some reason this one in particular is a sticking point for me. It probably won't be as detailed as the last, and I'm sure it's going to be shorter. Whether the omissions are because I can't or won't remember is beyond me, but there are definitely times, moments, days that are lost for now. I don't know if I am going to get them back, and I don't know if I want to get them back.

Backtracking a little, I'll start at the morning of the diagnosis, or my first full day in the hospital. I'd slept well, even after starting my IV drip of prednisone (the steroid to clear my eye), and woke up optimistic for the tests we were going to run. Blood was drawn and I was told I was waiting for MRI space to open up so we could run the scans. I was warned that my doctor had ordered a full battery of brain, orbital, cervical and thoracic spine scans, and that it was probably going to be an hour and a half of testing. Nervous as I'd never had an MRI before and it was a new experience, I was finally taken down to imaging in the early afternoon.

Now I know MRI and I don't get along well. I was in the machine for less than a minute before it brought on a full on panic attack and they had to pull me out and talk me down. The worst part was because the scans were of my brain, they wouldn't give me anything for the anxiety, and I had to work through it myself. Once I was calmed down and reassured by the MRI tech, she started playing my music again (in case anyone was wondering, the soundtrack to my hour and a half of scans was the Guardians of the Galaxy soundtrack and Gaga's Born This Way, mostly because it was the only thing I had downloaded on my phone and couldn't stream radio) and we began the process. She kept me updated on how long each scan would take and what it was doing, and I closed my eyes and tried to focus on the music the best I could. For me, it wasn't the noise of the MRI, but the space and the need to keep completely still. I practically tore myself off of the table when it was all done.

The rest of that night happened as I've already said, except I left out that the horribly uncomfortable positioning of the MRI had left me with a bad headache, which was being managed by pain meds but never went away.

Wednesday was a bad day, and one I don't remember well. Sometime over the course of the day the headache that refused to leave blossomed into a full migraine, and I was given IV magnesium sulfate, which finally cleared the headache up, but they neglect to tell you that mag sulfate hurts like hell when it's being administered. Like fire being pushed into my veins.

I also really don't remember Thursday and Friday. I know that I Skyped with and talked to my family, I know Jon was there, I remember all of the amazing things the nurses did for me and how kind they were, I remember talking to the doctor who told me at one point he was handing my case off to another neurologist I had asked about (I found her looking at the Cleveland Clinic page, and her profile specifically listed MS as one of those "things I can help with" blurbs). I also remember the visits from my friends Lise and Michelle, which meant so very much to me because it was wonderful to see friendly faces I knew and to have time to talk to people who weren't nurses, doctors, or staff. I probably spent a lot of that downtime I don't remember looking forward to those visits, since watching TV or reading was something I couldn't tolerate long with my eye. Lise brought me a beautiful coloring book and mechanical colored pencils which I worked on a bit, and Michelle brought me some lovely Christmas themed fuzzy socks which have been my constant companions since I've come home. There was lots of joking about the fact that the hospital garb had been done by a famous designer I actually knew (Diana von Furstenburg) and how it looked a lot like the Romulan uniforms circa TNG. I may not remember the clear passage of time and the order in which it happened, but I remember bits and pieces, and know that it wasn't all bad.

I also realize now, in retrospect, that I was beginning to see the side effects of the prednisone and the toll it was taking on my body. Those came into even more sharp relief after I was discharged and I was finally able to identify them, but at the time I thought I was fine, and was relieved that my vision seemed to be improving slightly from near total blindness. Hot flashes, increased anxiety, blood pressure, heart rate, etc. More on that later.

On Saturday Mom arrived. I won't ever begin to be able to thank my mother enough for dropping everything and flying across the world to be at my side when I fell ill, or for everything she did and had to endure herself while here, so I'm just going to mention how awesome it was to not only have mom time, but to be able to pick her medical knowledge brain, since she's been an RN for forever. I'd had my last IV dose of prednisone the day before and my discharge status was pretty unknown, because of the change in my doctor, but we were hoping I would be given at least one more day to readjust.

I met Dr. Victoria Mifsud that afternoon shortly after my mother came in, and I was instantly reassured I was in the right place with the right doctor for me. She spent a good long time with us answering all the questions that we had managed to come up with, explained the disease, reviewed my MRI scans again for the benefit of my mom, and let me know what treatment options were out there and then talked me through them and helped me pick the one we thought would be best for me. We decided on Gilenya, which is one of the first oral treatments approved for MS. Because the first dose of Gilenya has to be administered under supervision, we agreed that it would be best for me to stay in the hospital to just go ahead and get set up with long term treatment as we were only waiting on one more test. Dr. Victoria also got me set up with a few other doctors I needed to see while I was in, as well as an occupational therapist to help me with the new challenges that MS and being functionally blind in one eye (at least temporarily) would bring.

I wound up being discharged earlier than expected because something happened with the test getting shipped to the wrong place, and what should have been results in days would have been weeks and we didn't want to keep me in the hospital that long. I was relieved to finally be going home. I'd never been hospitalized before this experience, and by that point I was pretty tired of it. Cleveland Clinic may have been the best possible hospital experience I ever could have asked for, but one can only sit in a room for so long...

Mom, Jon, and I piled into the Kia and headed home. We had celebratory Burger Fuel that night as I was starving and sick of hospital food, which honestly wasn't bad, but had gotten predictable and bland. I even avoided the bun knowing that I probably didn't want to try sneaking gluten like I have been (I was diagnosed gluten intolerant three months ago) and messing up my stomach, since I'd been restricted to a strictly gluten free diet while I was in the hospital. I felt fine. I felt great to be home.

I had no idea what was coming with the rest of the prednisone, despite warnings from both my mother and the pharmacist who'd dispensed it that it was a horrible drug. I'd been taking it in the hospital and doing okay, right?

Wrong, but that's a story for another time.