Trying...

This title may seem too simplistic, but it can mean so many things: how my health has been trying my patience, how I am trying so hard to find motivation to DO something, how I am trying to regulate medications and even how I am trying to push my limits physically.  I do not think a person could TRY any harder.

My five day seizure study showed that the episodes of tonic spasms, breathing problems and syncope are caused by the muscles in my neck spasming while trying to protect my spine.  The EEG was completely normal during the episodes, so I am not having actual seizures.  The doctors then ordered two MRIs (cervical and thorasic spine), which I had to be sedated in order to endure the length of time needed to complete the tests.  With the seven compression fractures not healing well, getting worse in some places, causing kyphosis (curving of my spine), and atelectysis (squishing of the base of my lungs and reducing my lung capacity), my neck/back muscles are trying to compensate by spasming when they become too fatigued.  The neurologist suggested I wear a soft c-collar to support my neck during the day and use a soft neck pillow when I sleep.  She hoped that this would ease the obvious tension in my neck and reduce the frequency/severity of my spasms. 

This seemed like it was starting to work, to some degree, as my spasms and pain levels did in fact decrease in frequency, though not severity.  I was still having episodes while on my two week vacation with my family in Sanibel Island.  Thankfully I only had a couple of episodes, and only one day where I was indoors the entire day.  I did much more physically then I ever thought possible.  I am very proud of myself that I was able to walk on the beach, go in the pool, and even hold a fishing pole for a short time.  I did all of these things without using my walker once.  I found that while wearing the c-collar I am able to go longer without feeling the burning in my neck/back that inevitably leads to spasms.  Here is a picture of me during our vacation and a short video from a morning at Blind Pass on Sanibel....it was so beautiful and my parents caught quite a few fish this year! 

 

I also started taking valium when I first start to feel my aura. While this does not prevent attacks, it does shorten the length of time they last.

When we came home, I started pulmonary rehab and found I am able to do much more exercise then I thought I would be possible.  I am slowly working my way to stronger muscles, which will hopefully also help prevent attacks as the muscles will not have to work as hard to support my spine.  I am also trying a new muscle relaxant in the hopes of preventing episodes, so I take this medication three times a day.  It is designed to work directly on the spine/brain stem to relax the nerves that send signals to my muscles.  So far it is working well, but we are still adjusting the dose to see what works best.  I feel a bit like a chemistry set again, as I tried to lower my chemotherapy medication and flared big time.  Apparently, it is working after all...I was not sure that was the case. 

I have also been trying to go out more often to do FUN things.  I want to start enjoying life to the fullest.  I am tired of being scared of these attacks...tired of feeling like I have to fight for everything.  I want to RELAX and ENJOY.  So far I have been able to do this for short bursts of time.  It makes me hunger for more of those times. 

I am definitely TRYING and HOPING for more ups on this seesaw I call life.  So many things to look forward to in the next couple of months.  My family and I NEED this happiness and hope that is shining ahead of us.  I feel it is just out of reach, and I am trying to grab a hold of it with both hands! 

I am a FIGHTER...

Life has been the epitome of a seesaw in the past few months since the dreaded "TIA" episode.  The thing that is scariest is that the episodes are coming closer together, almost daily, are more severe in nature because they impact my breathing.  It seems I can squeek air in, but then the air gets "stuck" for around 5-6 seconds before finally choking out slowly.  It FEELS like a hand is wrapped around my throat and squeezing. Sometimes I have to remind myself to breathe at all.  That is extremely scary because there are times when I am completely unconscious and have NO control over my breathing. 

I am lucky that at least one parent is always around, so I am never alone during an attack. I take my medication as soon as I can swallow, which I try to do as soon as I feel it coming, to try to prevent it from getting too severe.  It is a problem that I only get about a minute or two warning.  It is not enough time for the medication to start working, but at least I get to swallow it before the choking/fainting begins. 

Yesterday was an example of how these attacks are unpredictable.  My Mom and I went shopping for pajamas with buttons on top, because I am going to be admitted to the hospital next week for a three-five day seizure study (complete with video EEG/cardiac/pulse-oxygen monitoring), and I was told that I could wear my own clothes as long as the tops had buttons or zippers (nothing over the head).  I was glad they allow me to be comfortable!  We found some very comfy pajamas at Kohl's and got great deals with coupons. 

My Mom and I then decided to stop for some lunch at one of our favorite local deli's.  As soon as we sat down she asked if I felt alright...I told her I was kind of tired and sore from trying on clothes, but was okay.  I should have listened to her.  She knew by looking at my eyes that something was wrong.  Right after eating I started feeling my "aura"...my head started to tingle and I got VERY tired and fuzzy feeling along with muscle spasms in my back.  I immediately took my medication and my Mom went to pay the check.  I was LUCKY to make it to the car before I fainted and went into spasms. 

My Mom has video recording of my attacks, and has shown my neurologist, and other doctors, which is why I am going in for the study. The neurologist does not think it LOOKS like a seizure, but he said he has been wrong before from just looking at a video, and the same has been true when he looks as a video and thinks it IS a seizure and it turns out NOT to be one.  He said that any neurologist will say the same thing, since there are so many different types of seizures and brain activities they look at during the study.  If it is NOT a seizure, then he will do an MRI of my cervical spine and possibly my thorasic spine (with contrast), to see if there are any lesions or demylenating issues.  This made me feel more comfortable because he is not giving up if this one study comes up normal (which I think it will).

I was upset that I was unable to attend the Walk to End Lupus Now 2014, which was last weekend.  I had flu like symptoms/high fever/spasms/fainting/ I also fractured my 9th and 10th ribs from coughing and being "sick", along with having such severe osteoparosis.  I am just happy that I did not have to up my prednisone to get through the illness.  I think that is a first...

Although I did not attend the walk, my team did manage to raise about $1,000.  I am VERY proud to have donated that amount to The Lupus Foundation of America, Florida Chapter.  We are an incredible chapter that is reenergizing with new, incredible board members, that I was fortunate enough to meet last night.  My parents were wonderful, and took/stayed with me to my board meet/greet.  I know it is not their forte to share their feelings and story with groups of people.  That is MY thing, and yet they did it for me.  My parents stayed the whole time, listened and shared...and their support means more to me then they will EVER know!!

I know my Mom wants the Board to be something "just for me"...and I appreciate that, but I also love that she involves herself whenever I ask.  My Dad is not a "sharer"...and yet he did that for ME...it is the little things like that keep me strong and keep me moving forward when I just want to throw my hands up. 

This video by Christina Aguilera, Fighter, has become my new anthem...I am a FIGHTER because of what is going on in my body. I will NOT forget what has happened, but I will allow it to make me a STRONGER person...I am trying very hard to not allow my illness or fear to run my life, so I keep this song in the back of my mind, and play it often as a reminder.  I AM A FIGHTER!  I have been through so much and I keep going...

I will update everyone after my seizure study next week.

The Seesaw of My Life - One Week Up...One Week Down...Looking Up Again

In the past few weeks I have had my true ride on the Lupus seesaw.  I had an incredible time at my cousin's wedding in Roxbury, NY. The location was beautiful, seeing my family was incredible, and my body cooperated enough for me to have a wonderful time at all of the events.  I was able to do more then I ever thought possible!  I even danced at the wedding (something I NEVER thought I would be able to do again, given my back fractures), but not only was I able to dance, I was able to do it with little pain!!  I was mindful of my limitations and made sure to listen to my body, and because of this, my parents and I had a fantastic trip.

 

The day after we came home I had an appointment to start the bone-building medication, Forteo. I had researched this medication, and my doctors and I all agreed this was the only medication that seemed to "fit". It is a daily injection, given for only two years.  There are no preservatives that would harm me...so we went ahead with the plan to start the medication in the doctor's office, just in case I had a reaction. I am not a huge fan of sticking myself with a needle, but it is a subcutaneous shot, so the needle is very thin and it came in a pen, so it was a premeasured dose and very easy to handle. I was able to complete the injection into my stomach with no real problem. About thirty minutes after the injection I realized that the site burned, so I lifted my shirt to look at the site, and noticed that there was a VERY red, VERY angry looking red circle that came away from the injection site, along with a red line that went from the site to box in the circle.  I knew this was NOT a good sign. I showed the nurse, who promptly went to get the doctor. She was not pleased with this, and made me stay for another hour to make sure I was not going to have any other reaction. After the hour, the redness had receeded a little, and I was feeling fine, so she let me go home...and instructed me to go to the ER if I felt any worse. If the redness had gone completely and nothing else happened, I was to come back the next day for my next injection. If not, I was to wait a week and we would try it again.

 

 

About three hours later, I looked at the site, and noticed that the redness had almost completely faded. I was relieved because I was having no other symptoms. I figured I would go back the next day for another injection. Oh how wrong I was...because forty-five minutes later it felt like I just got off the tea-cup ride from Disney World, I was SO dizzy. Then the vomitting began...and it would not stop long enough for me to take medication that would help the other symptoms I was beginning to experience: muscle spasms, fainting, and throat spasms. I could barely breath. I knew I had to go to the ER because there was NO way I would be able to take my medication that would open my throat with the way I was vomitting. 

 

 

My parents drove me to Cleveland Clinic, which is where I had the injection that morning, so the records were in the computer about what happened.  The ER doctor was very concerned because this reaction started with a skin reaction and then went systemic...so they gave me the cocktail, despite my protests that they just try zofran and valium first. He said that my choice was epinephrin AND solu-medrol or just solu-medrol along with zofran, benedryl, and valium...I relented and took the one without the epinephrin because of how high my heart rate goes on epi, and how difficult it is to bring it back DOWN.  I was afraid of another stroke if they shot my heart rate up that high.  Well, despite NOT getting the epi, I had a neurologic event that resembled a TIA. About thirty minutes after receiving the medications (which were given ALL at the same time...talk about a whammy), my left side went completely weak and I got very confused.  It was difficult to concentrate on what the doctor was saying, although I am not sure if that was from fear, medication, or the event itself.  The doctor said he was going to intubate me (put a breathing tube in), if I did not improve or if my breathing became more labored. I was extremely frightened at that point.

 

They rushed me into CT and that came back normal. My symptoms of left sided weakness completely resolved within fifteen minutes.  The doctors are not sure what happened...maybe the medications hitting me all at once, maybe a slight TIA, we just do not know.  I see my neurologist on Monday to discuss what happened. 

 

My breathing did not improve until three hours after the medications were given...and four afters the symptoms started.  I was exhausted! All the tests came back normal and all I wanted to do was GO HOME! The ER doctors wanted to keep me overnight for "observation", but I signed myself out...I could not stay there any longer and keep my sanity.  My Mom and I were over-tired and the ER was incredibly crowded.  We made it home and in bed just before midnight.

 

It has taken me about a week to start recovering from that horrific event.  I still am suffering from PTSD (Post Traumatic Stress Disorder), and have flashbacks that wake me up at night and make it difficult for me to go back to sleep.  I am trying to remind myself that I am safe...I am home...I am still here...

 

Just writing about what happened shows that I am on the upswing...even as I have tears in my eyes writing this, I know that it is cathartic. I have to get it out and let it go.  That is the only way to move forward.  I made a promise to myself to stop being treated like a chemistry set.  I cannot move forward when the medications given to me blow me up and push me back.  I will stick with the medications I know work, eat the foods that do not make me ill, and do as much as I am physically able to keep myself strong...and that will make me stronger still. 

 

I am tired of the downs that life brings my way...I am ready for more time UP...this is the seesaw of my life. Some things I have control over, and what I put into my body is one of those things. I also control how I FEEL about what happens.  Of course I will have days when I feel sad, that is normal...but I want more days that are HAPPY. I want to enjoy the little things in life. That I can do...that I WILL do! Lupus, autonomic dysfunction, back fractures...they all change things, but I can still be happy with what I can DO. I have to focus on that...the rest will come with time.

Practice What I Preach - Life Post TIA

One week ago I suffered from a TIA, transient ischemic attack, or mini-stroke.  The only reason it stayed "mini" was due to the fact that I was able to notify my Mom, who called 9-1-1, VERY fast.  I was rushed to the nearest hospital where I was given TPA, the medication to dissolve clots and save the brain from permanent damage. 

We knew something was VERY wrong because when I woke up around 8 a.m., I had double vision and the room was spinning like I had been on the Teacup Ride. I closed my eyes and tried to relax, convincing myself that maybe I sat up too fast and my pressure shifted (though nothing like that had ever happened to me before). When I opened my eyes about a minute or so later, my vision had improved, though still blurry, and the room had stopped spinning, but my right side had gone heavy/limp/paralyzed.  I reached over and grabbed my cell phone to call my Mom on the house phone.  I then realized that I could not keep my head from flopping back towards the right, and my tongue was also shifted towards the right.  All I could say into the phone was a slurred "wrong".  My Mom came rushing into my room and she tried to do the typical neuro tests on me, that we know so well, and that I can usually do with no problems at all.  This time, however, I could none of them on the right side. When she asked me to smile, she knew something was terribly wrong...my mouth went up normally on the left, but stayed in a straight line on the right.  That was when she called for the ambulance.

I was EXTREMELY lucky! This medication can only be administered within the first three hours after exhibiting symptoms, and I was given the medication at the two and half hour mark.  My symptoms started improving each hour after that...slowly...starting with having more strength in my hands, and moving the right side of my mouth...the last thing to come back was the strength in my leg, which was back twenty-four hours after the TIA.  I was in the hospital a total of three days.

Picture when my mouth was finally starting to smile normally!

On the last day, the neurologist told me I NEEDED to take a blood thinner to prevent this from reoccurring.  The problem, I told her, is that I am allergic to NSAIDS. Last time I took one I had a Steven-Johnson reaction, which is a very serious skin rash that can turn deadly if left untreated, as sores can form on internal organs.  I was told by a dermatologist that I was LUCKY to be on steroids because it saved me from having a more serious reaction and organ damage.  Well, this neurologist believed that if I took a baby aspirin, only 81 mg, three times a week, specially compounded to have no inactive ingredients that could make me ill (since the OTC brands all have talc's and starches that irritate my lupus), I "should" be fine. 

I really need to start taking my own advice about being your own advocate!  I listened to this doctor...I had this aspirin compounded, paying $22.00 for fifteen pills of baby aspirin to hopefully prevent me from having future clots. She truly scared me that if I did not take this, another clot could, indeed happen.  I knew the risks, though...and I took the pill anyway.  Less then an hour after I took the aspirin I felt the burning/itching sensation up the back of my neck...it quickly went into my throat and into my nose and eyes.  My Mom took me back to the ER where I received an IM (intramuscular) injection of benedryl (which in my opinion does NOT work as quickly or effectively as IV benedryl), dissolvable zofran for the nausea (again, not as effective as IV), and my own muscle relaxant for my throat spasms, since they would not give me anything for that since I refused solu-medrol. 

I DID advocate for myself by refusing solu-medrol!  There was NO WAY I was getting another 125 mg injection of steroids and then a medrol-dose taper for a medication that is supposed to be out of the system in four hours.  I knew I needed the benedryl that went directly into the body...as my stomach does not absorb things properly on a normal basis, and I was so nauseous, I had no idea if I could keep down enough oral benedryl to make a difference.  The ER doctor did not seem pleased with me that I refused the steroids, just like the neurologist was not pleased when I told her I could not take aspirin.  I relented on the aspirin and put me right back in the ER with a severe allergic reaction!! 

From now on...I am not going to care what the doctors think about me!  I am going to SAVE MYSELF!!  They do not have to live in this body, I DO!  I will let them know the reasons as politely as possible, but I will not back down.  This is my life, and let me tell you, I WANT TO LIVE IT!  It is high time doctors learn to LISTEN to their patients, and understand we just want to LIVE and be HEALTHY with the LEAST amount of side effects possible!! 

A Coffee a Day to Keep the Fainting Away?!?

I have been sick with a sinus infection/upper respiratory infection for about a week now, on some seriously strong antibiotics and muscle relaxants to help with the spasms that wrack my body.  Every time I become sick, I faint...my muscles spasm uncontrollably, including my throat, making it very difficult to breath (especially when I have a respiratory infection).  While the muscle relaxants work, I know it is not good to take them continuously, and for long periods of time...because not only would I build up a tolerance, my body requiring more and more of a dose to achieve the same results, but it would be very difficult to stop the medication when I feel better. 

While most people would have gone to the hospital after experiencing the type of symptoms I had, I waited it out...hoping I would start to feel better.  I know that if I went to the hospital the doctors would, first and foremost, insist on putting me on high dose steroids to take down any inflammation.  This is such a common practice...and one I have experienced more times than I can count.  I know my body cannot handle another bout of high dose steroids...my bones will literally fall apart. I already have severe osteoporosis and multiple compression fractures in my spine, from years on the steroid seesaw.  I will not put my body through that torture again!

Yesterday I remembered something my pulmonologist told me years ago, when I stopped taking inhalers because of all the side effects...caffeine is just as effective a vasodilator as some of the inhalers.  It works to keep the airways open, the blood pressure and heart rate up, which can increase the oxygen levels in the blood. 
I figured, what the heck...I would give a cup of regular coffee a try. 

After I went for some blood work, my Mom and I stopped at Dunkin Donuts and I got a regular iced coffee...I added my almond milk and a couple of sugars at home, and was really surprised by the difference it made.  My breathing DID somewhat improve.

I drank the rest of the coffee this morning, and while I did have muscle spasms, I DID NOT FAINT!  My blood pressure and heart rate stayed up enough to keep me from fainting!  My airways opened up enough for me to breath a little easier after getting rid of some "junk" that was stuck in my airways  (sorry if that is too descriptive, but I want you to understand how this is working for me). 

I am by NO means saying this is for everyone, or that it is a wonder cure...but if it helps keep me from fainting, that would be HUGE!  Here is for hoping a cup of coffee a day can keep the fainting away!!

Dating Again...

I have been single since I fractured my spine in the beginning of October.  I have not even ATTEMPTED a date since that time.  At first it was due to the fact that I was fresh out of a relationship I hoped was going to work, and then it was because I was completely focused on my health.

I did not feel like myself, look like myself (thank you Cushing's Syndrome for the lovely moon face and belly), or have the desire to even TRY to put on an act for anyone. Once I stabilized on my "normal" dose prednisone (15 mg), I started to feel the shift in my personality, back to a more healthy sense of self.  The weight from the Cushing's Syndrome is SLOWLY coming off...about a pound a week...I have about eight more pounds to go before I will be satisfied. So far so good, especially with my new diagnosis of hypothyroidism (which does make weight loss more difficult, especially around the mid-section). I also feel as if I do not have to put on a show for anyone, but can be myself...and flirting is fun again. 

The scary part, for me, with meeting someone NEW is that the guy does not know the details and realities about my illness.  I always explain that I have lupus, autonomic dysfunction, spinal fractures, etc...but dealing with the everyday symptoms of a chronic illness are difficult in the best of circumstances, when trying to cope with them while just learning about each other and trying to have FUN is a whole different ball game. 

I am trying to take one day at a time and just go with it...hopefully I will finally meet the right guy...the one who can accept ALL of me...love ALL of me. 

Fuzzy Head (and other symptoms) = Low Thyroid

So after months of tonic muscle spasms, headaches, throat spasms, chills, dry/itchy skin, depression, extreme exhaustion, weight issues (especially in the midsection), and a REALLY fuzzy mind (including stuttering at times), we finally figured out what is wrong...I have hypothyroidism.  The thyroid has to work overtime to create the thyroid hormone (TSH) to try to keep up with the body's demands.  Due to the overtime work of the thyroid, the TSH (thyroid stimulating hormone), is high.

This diagnosis was made when I went into the ER for stuttering.  Of course, the doctors immediately thought I had a stroke, and I am incredibly thankful the doctor thought enough to run a thyroid panel along with all the other blood work.  I did not have a stroke. With the headache, tonic spasms, and fuzzy mind along with the blood work, the diagnosis of hypothyroidism was made. 

My rheumatologist started me on the most natural form of thyroid medication (and the oldest), Armour Thyroid.  He started me on half the lowest dose, to make sure I did not have a reaction, since I am so sensitive to medications.  Unfortunately, the new medication can take five weeks to START working.  I feel a little better with the spasms, but the exhaustion, fuzzy mind, depression, and dry/itcy skin are still quite annoying!  Also, a side effect of the medication is hair loss...for at least three months as the body adjusts. Sigh...yes, this seems to be one side effect I am experiencing.  I have to keep reminding myself it is temporary. 

I think the worst thing for me right now is the depression and fuzzy mind...although I am wondering which came first. I know that depression can CAUSE a fuzzy mind, and I know that a fuzzy mind can CAUSE depression...I have a feeling that in my case, the fuzzy mind is causing the depression.  I am not used to "seeing through cobwebs". That is the best way to describe how I am thinking these days. 

I have a thyroid ultrasound on Friday because my doctors noticed that it feels enlarged.
The only thing left to say is I hope as the medication starts to work, the days become brighter as I drag myself back from the edge of the darkness and try my best to see through the cobwebs.

Shrinkage

I knew the fractures in my spine caused me to lose some height, but I thought only a couple of inches from my already petite frame.  I started out at only 4'11...now, after SEVEN vertebrea fractures, I am 4'6.  I shrunk five inches. I never thought it was that much! 

It is no wonder the prednisone weight seems so drastic even though I only weigh 105.5 now.  I am losing about a pound per week, yet still look like I swallowed a beach ball, and now I know why. My torso is SO short now, which, truthfully makes my legs look MUCH longer. I do not really see that as a bad thing...although it does make finding clothes that fit properly a challenge, especially tops and dresses.

I do have to continually work on my posture, making sure I stand up straight, not hunching over...keeping my shoulders back and head up (my physical therapist calls it "walking like a supermodel").  That has helped dramatically, but I still have a long way to go...and I know I will never regain that height.  I just have to deal with the fact that I shrunk.  I shrunk five inches...sigh. 

For all of you on prednisone, PLEASE, take some form of calcium and  vitamin D to hopefully prevent spinal fractures and SHRINKAGE! 

Takin the Ride to Facebook!

I decided to take this wild ride to Facebook  I will, of course, still write here...so have no fear, this page is going nowhere! Here is the link to my new Facebook page, where I will be posting Lupus information, events in my area (and online), offering up support, and fun pictures  :)  Ivylfa My Lupus SeeSaw .  I hope you will "like" my page and spread the lupus awareness and lupie/spoonie love! 

Thank you so much for your support and for continuing to read about this crazy/wild ride I call Living with Lupus!

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.