I Did The Right Thing...

As much as it pains me, I gave up another piece of my independence. It almost seems fitting that this is happening during Lupus Awareness Month, as this is the root of my problems.

Today, as I was making my appointment to renew my driver's license, the online form asked two very specific questions: "Have you fainted or had dizzy spells in the last 12 months?" and "Do you have a disability that could impact your ability to drive?". Those two questions knocked the wind right out of my sails.

I never thought I would have to answer questions about my health when renewing my license...I ASSumed all I would have to do was show up with the required documents and get my picture taken for a new one. Never did I think I would have to answer "yes" to the above questions, which will effectively stop me from getting one of the last pieces of independence I have left. 

No, I do not drive often...but when I am "well" for a length of time, it is always nice to know that I have the ability to get in the car and go. That will be taken away. More then likely I will only be able to get an ID card. Maybe if I can be "stable" for a good length of time one of my doctors will write a letter stating that I am well enough to drive again.

I know I could have lied...I could have easily checked the "no" box next to the fainting question and kept my ability to drive when I was able...but it just seemed too wrong to lie when asked a direct question about my health.  I am not that person.  Eventhough I threw myself a nice pity party, I still had to do the right thing. 

I am not ashamed that I have lupus. I know that this is not something I did to myself...I do everything in my power to help myself get and stay as healthy as possible. I take my medications, do the physical therapy, keep looking for better treatments, and TRY to keep a positive outlook. This is just one more thing I have to overcome...at least I can say that I did the right thing. For that, I am proud.

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.

Lowering Prednisone is a Good Thing...Lowering Prednisone is a Good Thing

I am going with the notion that if I repeat something long enough, maybe I will start to believe it is the truth.

Of course, logically, I know that lowering my prednisone by any amount, let alone from 25mg to 20 mg like I did, is a very good thing. It lowers my risk of Cushing's Syndrome, osteoporosis (both of which I have, so lowering will help reverse both), diabetes, glaucoma, ect...but right now logic seems to be taking a backseat to the pain and general ickyness that happens every single time I drop my prednisone.

It is difficult to stay logical after having a wonderful, relatively low pain, high fun weekend. I went to Zoo Miami on Saturday and, even though I had to be pushed in a wheelchair, the weather was perfect, the animals were active, and my parents and I got to have a very nice impromptu lunch with my aunt and uncle who live in the area. Next time we go to the zoo, I definitely want to do the rhino encounter...anytime I am able to be up close with an animal like that makes me a happy girl!

Sunday my parents and I enjoyed more gorgeous weather and decent healthy feelings by going to an outdoor shopping plaza. We ate at Jason's Deli, which was so good, then I thought I went to heaven because there was a new TCBY near the restaurant and they now serve dairy-free almond milk fro-yo!! It tasted like the richest dark chocolate soft serve imaginable...so good!! We will definitely be going back there!! The shopping plaza also had a small farmers market that we were able to explore, which is always fun. I just wish it was larger or offered more fresh produce.

So on Monday, when my body registered the drop of prednisone and started spasming and sucking the energy from me like a vacuum, the disappointment I felt, and feel is palpable. I knew going into this that this is exactly how I would feel, but it hits me everytime like a ton of bricks. I don't think I can ever fully prepare myself for the onslaught of emotional upheaval after feeling well...even knowing I will be stable again in just a week, week and a half. With this kind of pain, it is going to be a long week or so...hence the mantra "lowering prednisone is a good thing...lowering prednisone is a good thing".

Hair Hair Everywhere...Chemotherapy medications, lowering prednisone, and a fractured back...OH MY!

Since I last wrote in October, I had to stop the Neoral due to bone pain, which I later found out were my bones fracturing. I started and immediately had to stop mestinon, which is typically given for autonomic dysfunction, because I had such a severe reaction. This reaction set me back in a huge way. I was given high dose IV steroids and subsequent high dose steroids to take at home until the reaction calmed down. This only treated half the problem, though. The other half of the reaction were muscle spasms that made it look like I had tetanus...that is how hard my muscles would lock. The doctors put me on valium to ease the spasms, which helped tremendously.

Due to both the Neoral and high dose steroids, I fractured six vertebrae, my fifth metatarsal (which has healed), and two ribs (which are also healing). Unfortunately, my spine is taking longer to heal. I am wearing a back brace all the time to protect my spine and also keep it straight. It looks kind of like a turtle shell in the back. I started on vitamin D because my levels are so low. They have to come up before I can start on the bone-building drug Prolia.

I also started on the chemotherapy medication, Imuran, to help me lower the prednisone. The first few doses were too low and I still had all the side effects...fainting, migraine headaches, stomach issues, pain, etc. Finally, at 100 mg per day, I think we found the right dose for me. My main side effect from both lowering prednisone and the Imuran is hair loss.

I believe this is a small price to pay, in the long run...hair does grow back, usually prettier then before. I know this because when I first started on steroid-sparing drugs my hair did the same thing. I did wear a wig, which helped my self esteem.I think it is almost time to go wig shopping again.

I am not depressed this time around about the prospect...in fact, I am kind of looking forward to trying different styles, and maybe a different color...who knows? What I do know is that I will pay the price of hair if it means I can lower prednisone without fainting and migraine headaches. Hopefully the stomach issues will resolve themselves over time, if not, I will deal with that too.

All I know is that I am finally down to 25 mg of prednisone and will be, hopefully lowering again next week to 20 mg. I see my rheumatologist today to discuss. I will keep you updated more frequently,now that things are a bit calmer.

Glimmer...

I began writing a post yesterday morning, and it had a very different tone then the one I am writing now.  I am glad that I ran out of steam before I finished it, and published the blog.  The constant pain from a fractured sacrum, lack of sleep, and what seemed like doctors who were unwilling to treat me came crashing down around me in one wave of Pity Party Central.  Not that the pity party wasn't well deserved, but it also wasn't "me".  Somewhere along the line of pain and lack of sleep, coupled with...ah yes, high dose steroids, I lost what is intrinsic to my personality, and that is HOPE.

Sometimes that hope is just a glimmer I can see off in the distance, but it is always there somewhere.  Thankfully, after yet another discussion with my rheumatologist, that glimmer of hope came back.

So, tonight, despite the ice-pick pain in my hip from my sacral fractrure (due to long term  prednisone use or from the last immune suppressant I was on...and am now off), lack of sleep (insomnia from the high dose steroids I am unable to lower until I start my new glimmer of hope...Benlysta), and the fact that I have NO idea if my insurance will approve this very expensive, new, infusion....I have some hope.

Some people may wonder how, after trying so many medications, and I have tried every pill/liquid on the market for lupus, I can still have hope that something will work.  For me, that answer is  simple....I am not the only one with lupus/autonomic dysfunction, therefore, there has to be a way to treat the underlying illness.  There are always new treatments becoming available, and ones that treat similiar illnesses that might work, if this one  does not.

I am only 33 years old....I am way too young to give up and curl into ball, even if I have to give my body a break every now and then to let it heal (like now with the fracture).  That is not me giving up or even going into survival mode (though I don't think anyone would blame me if I did)...it is making sure my body heals itself in the most effective way possible, and as ordered by my doctors.

As I heal from fractures, my hope slowly being restored, my wish is that this glimmer will turn into something as bright as the sun so my whole family can feel the effects.  This is not just MY illness...but their's as well.  We have all felt the downturn in my mood, so here is yet another HOPE, that we all feel the uptick in my mood, as well!