The Good, The Bad, and The Oogly...Lowering Prednisone for (Hopefully) the Last Time!

Two days ago I lowered prednisone, from 20 mg to 15 mg.  This will HOPEFULLY be my last drop. I know, I know...most people's goal is to get OFF prednisone, or at least much lower then 15 mg, but I have never lasted a long time on a lower dose then 15 mg.  So that is my goal, to stay on 15 mg for as long as possible.  I looked NORMAL on 15 mg...no Cushing's Disease, no extra fluid, no diabetis or glaucoma.  I am now on Calcium Citrate and Vitamin D, so we are hopeful that my bones will continue to heal and get stronger. I also will probably start on a bone building drug once I stabilize on this dose, but that is a discussion for another time, and an issue I am not worrying about right now.  One thing at a time!

Those were all the good things about lowering: last drop, no more Cushing's Disease, looking and feeling normal, not having to worry about diabetis or glaucoma, and being on a lower dose is better for my bones.  Now for the bad part of dropping...the pain, insomnia, mood swings, nausea (and other stomach issues), fatigue, hair loss from the physical stress and change in hormone levels. I go through this for at least two weeks, though the stomach issues come and go for longer as I lose the Cushing's weight. It is one of the worst parts of dropping a dose of steroids, although I know I will like the outcome.  It is no fun feeling like Kermit the Frog (It's not easy being green).

The oogly (and yes, I know that is not really a word, but I think it fits here, since ugly is not nearly strong enough to describe what I go through), parts of lowering prednisone for me include: migraine headaches. I get at least two during this process as my body adjusts to the dose. If it was JUST a migraine, which would be awful enough, it would go under the "bad" category, but no, my body cannot leave it at that...along with the migraine headache (which are called hemiplegic migraines because they occur on one side of the head and cause syncope, or fainting), I faint, get horrible muscle spasms down my neck/back/into my legs and literally curl my toes, and the worst part is that my throat and vocal cords spasm as well.  There are even times when the spasms (including my throat spasming), happen when I am unconcious, and I "come to" choking.  Those times are the scariest for both me and my parents (whichever parent is watching me at the time).

During these two weeks, since I never know when I am going to faint or get a migraine headache, I am rarely left alone. If I am left, it is either on the couch or in bed.  I know not to get up without anyone here, as falling, which has happened before, would be devasting for my back or worst, if I hit my head.  I cannot afford to fracture anymore bones.  I will be super careful when I walk without my brace now, and will be using my lower to the ground hospital bed for the next two weeks.

So like I said, lowering prednisone has its good, bad, and oogly parts...but it is a necessity to get to, and remain at 15 mg.  Well, I am on 15 mg now and plan on staying here through all the misery the next two weeks will hold because I can see the light, though it is still in the distance, at the end of this VERY long tunnel!  That is what gives me the will power to see this through...knowing I am done...knowing I can breathe a sigh of relief after only two weeks of hell.  I can get through this, like I got through all the previous drops.  That is my mantra for the next two weeks...I can get through this!

Moving Forward...Different Meanings for Different People

I have come to realize that the term "moving forward" means different things to different people.  For me, moving forward doesn't mean moving forward with a career path YET.  I emphasized yet because although it does not mean that for me right now, I am hopeful that it will in the future. Right now, though, like so many with chronic illness, moving forward means taking pride in the victories many people cannot see.

Just this past week I moved forward by being able to take my back brace off during parts of the day and night.  I also was able to shower myself, which, up to this point, since fracturing my spine, I have not been able to do.  It also meant that I was strong enough to, each day, get my own lunch, snacks, and refill my drink.

I did have a flare up of my lupus symptoms this week after spending all morning in the sun on the weekend after taking my parents to Butterfly World as their Valentine's Day present.  Although this knocked me back for a few days, we all had a wonderful time that day, and I do not regret going.  Some things are just worth it...and the beauty that surrounded us that day was one of those things.  I was even able to stand to take some pictures...I viewed that as moving forward, as well. I even came to realize how much I enjoy taking photographs of animals...something to think about, and maybe research as my healing progresses.

I also started writing my book again...a fantasy/romance novel.  It is definitely for adults, super creative, and has nothing to do with illness, which makes it perfect for me as a form of escapism.  I consider that moving forward, too.  Although I do not write while I have a migraine, for obvious reasons, I was pleased that the ideas did not stop, so today I started writing again.  Only a few days break this time.  I write in short bursts, but the words just flow out in that time as if they were stored up and just had to be put down somewhere until there were none left.  Again, I consider that moving forward.

Other people would see these things as trivial...or not enough.  I see them as strides in the right direction. After all, Rome wasn't built in a day, and my body will not heal in one either.  Until it does, I will take pride in each and every step I am able make that puts me one step closer to health.  Yes, there will be set-backs, but that is the nature of the beast with auto-immune diseases, but if I can get myself back up to take those little steps forward again, I know I can continue to move forward to whatever destination I choose for myself.

When the Mind is Ready to Move on, but the Body Says NO...

I have been on 20 mg of prednisone and had to up my Imuran (chemotherapy medication), because I had such a hard time lowering the prednisone, for almost three weeks now. I 'normally' start to stabilize by this point. That was what I was counting on, to be honest. After such a miserable time dropping my prednisone from 25 mg to 20 mg, my body needed a break...and so did my mind.

The constant pain, having nausea 24/7, and dealing with fainting/throat spasms was wreaking havoc on my emotions. I saw what my decline in health was doing to my family, as well, and more then once I wondered what I was doing here at all but making my parents feel incredibly sad and worried about my health. Dark thoughts during dark and painful times.

Thankfully, the depression has mostly lifted, the pain is not as severe, and the nausea not quite as constant, but my body still is not ready to let up the hold it has and let me stabilize. How am I supposed to 'move forward' as my mom puts it, when I still feel like a walking prednisone side effect? Goodness knows I want to. I would love to start planning for my future, where lowering prednisone and waiting to stabilize are in the past...when I no longer look like I am wearing a turtle shell on my back (three more weeks until I find out if I can take the brace off).

My mom asks me what I want to do with my days, to move forward....right now, I would be happy with being stable and starting to get out of the house a bit more. Thinking beyond that, well, let's just say when I think of it, my body says NO! So the body wins this round. Hopefully, by next post, it will have eased up the grip it has on me, and I will not only be moving forward, but surging ahead.