Ivy’s Page

 Ivy Shapiro’s Page – Read below for Ivy’s Bio and personal article…

My Mom and I both have SLE, although I was misdiagnosed for 20 years, having only been “labeled” with SLE in April 2009.  Finally, the pieces of the puzzle made sense, as my symptoms were always very “autonomic” in nature, which made diagnosing me difficult.  The main problem was that I was treated with too many medications before I was tested for the autoimmune antibodies.  Once I was off certain medications, the test came back positive.  I am now able to find the RIGHT treatments that fit.

I have my B.A.E in Exceptional Student Education from FAU.  I am currently on the Board of Directors for the Lupus Foundation of Southeast Florida Chapter and am a moderator on the Lupus TalkFloridayahoo group, “Living with Lupus”.

Normal”ish”

By Ivy Shapiro – Feb. 18, 2012

When I raised the dose of my cellcept to twice a day on Tuesday, I was expecting to spend a full week in bed, with my head full of fuzzy cotton balls.  I am very happy to say that the overwhelming fatigue, pain, and cotton ball feeling only lasted two days.  I am now  feeling more normal”ish” then I ever thought possible.

Yesterday I began exercising on my treadmill, not much of course, but a nice slow pace for twenty minutes to get me started.  I plan on doing this each and every morning I do not have a migraine.  Today I went out to lunch with my Mom and bought a new mattress (sigh…such a wonderful, soft pillow-top).  Overall it has been a really nice couple of days for me.  I am hopeful that this trend will continue, and that my body will keep healing from the trauma of the past couple of months.

I know I will never be society’s standard of normal.  I have accepted my body’s limitations when it is working at full capacity at this point…maybe cellcept will stretch those limits one day.  For right now, I am happy to be able to enjoy the days I can be normal”ish”!

CHEMISTRY SET

By:  Ivy Shapiro ~ Feb.  12, 2012

I am just starting to get over a three week migraine that was caused by a rare drug interaction between cellcept and mirilax.  Cellcept is not supposed to be taken with any kind of “bowel prep”, as stated in the patient information handout, because the medications contain magnesium.  Mirilax is a different kind of laxative, only drawing fluid into the bowl gently, not used for “cleansing”, and my doctor knew I was taking it frequently for my slow gastric motility, when I was put on cellcept.  I had NEVER had an issue with the medication before…I certainly did now.

It took a while for me to realize that it was the mirilax causing the problem, and not the cellcept or just withdrawals from lowering my prednisone dose (since everything happened around the same time).  Once I decided to stop the mirilax to see what would happen, the migraines stopped as well.  Of course, now I have nothing to help my stop “work” more effectively.  I am trying to add some foods to my diet to help, but with my system, I have to be super careful not to set off another migraine.

On Wednesday of last week, we had to have our garbage disposal replaced.  In doing that, the guy used glue which had a chemical odor.  That was enough to set off my lupus.  My sinuses burned, throat went into a spasm, and I fainted.  When I came to, I went into my parents’ bedroom to take a shower, while my parents aired out the kitchen to get rid of the odor.  I was planning on staying in the bedroom for a while after my shower in the hopes that the odor/chemical would not bother me.  As soon as I stepped out of the shower and into the bedroom my sinuses started to burn and my throat started to spasm.  I couldn’t “smell” anything, but my body seemed to register the chemical in the air.  I quickly got dressed and ran outside.  I told my parents what was happening, and then I fainted again, outside on our front porch.

I had a meeting with SSI early that afternoon, so my Mom and I made sure to keep that appointment and get some lunch.  My breathing and sinuses were having some issues for a while, but continued to improve to the longer I stayed away from the house.  I decided it would be smarter to spend the night in a hotel while the glue dried, then risk trying to go back in the house.  My Mom was upset and anxious that I was going to be out of the house, but I was confident that I would be alright as long as I was away from the chemical.  I was right.  I was perfectly fine, albeit exhausted.  I napped in the hotel, went to sleep early and went home the next day with no problem.

The incident did let me know one thing.  I need to up my cellcept.  I am right on the edge of having another major setback.  One little push from a trigger and I am going to be right back where I started.  Unfortunately, it’s like playing with a chemistry set…a little more of this, a little less of that, and hope I don’t go BOOM!  Here’s hoping for the best…

Another Day in Paradise

By Ivy Shapiro –Jan. 23, 2012

I am going to make this update short and sweet since I have a truly awful migraine.  The migraine I had on Wednesday wasn’t this bad and had completely gone away by Saturday.  It came back with a vengeance yesterday, early afternoon.  I knew I didn’t feel right yesterday, since I woke up with a fever and a “sluggish” feeling.  By late afternoon I fainted and when I came to I had the burning pain over my right eye.  I have since fainted a few more times.

My fever has not broken this morning, and the migraine seems to be worse, though I am not even sure how that is possible.  I am hoping today is a “reboot” of my system and by the end of today (though that would mean today won’t be pretty), my symptoms will improve and tomorrow will be a better day.  Come on cellcept…KICK IN and stop kicking my butt!!

 

Prednisone 1 – Cellcept 0

By Ivy Shapiro – Jan, 19, 2012

 In my last post I mentioned that I was lowering my prednisone from 25 mg to 20 mg on Tuesday and that by Wednesday I would know how the cellcept was working based on whether or not I had a migraine.  Since yesterday was Wednesday, boy did I find out, and it was not a good day!  I woke up feeling like someone sucked all energy out of my body through every available pore.  I slept most of the day, thinking that if I gave into the need to rest, maybe I could stave off any symptoms that were worse.  That did not work at all, and I should have known better, since this is not my first rodeo.

By about five o’clock, I had just woken up again from another nap, and was in the kitchen getting some cereal for dinner, when I started to feel that familiar “aura” that precedes an episode of fainting.  My Mom was in the kitchen with me, so she heard me say “have to get to a chair now”, as I stumbled out of the kitchen in search of the couch.  I made it to the family room and the couch just in time to pass out.  I “came to” with a migraine and the knowledge that I would be raising my dose of cellcept on Friday.

I fainted two more times before I was able to get to sleep for the night.  I had nightmares and night sweats last night and I awoke with the migraine firmly in place over my right eye with tightness in the back of my neck on the right side.  TO THE BAT CAVE! (Shh…quiet…dark…cool bedroom…)

…And So We Wait

By Ivy Shapiro Jan. 17, 2012

Yesterday I called my rheumatologist to find out if I would be lowering my prednisone after ten days on the cellcept liquid (now remember, this is on the lowest dose, once a day).  After asking if I was on “25 mg”, I replied, “No, I’m on 1 ml…that’s of the 200 mg/per ml, I think”.  He laughed and said, “No, I meant of the prednisone.”  Sigh.  I should have known what he was talking about, but it was night time when he called me back and I was tired, darn it!  My brain cells had already called it a day.  Once I got over my embarrassment, I said, “Yes, I’m still on 25 mg of prednisone”.  We then decided that I would only lower my dose by 5 mg this time.  When I dropped by 10 mg last time it was way too much, but dropping by 2.5 mg would not be nearly enough (I feel a little like Goldilocks here…too much, not enough, ahh just right!).  I am going to call him again on Friday to let him know how I am doing on the 20 mg of prednisone and 1 ml of cellcept, and we will make a decision as to whether or not I raise the cellcept.

Since the morning I called him I have been giving myself a pep talk about lowering my dose of prednisone.  I knew he would tell me to lower, since I felt pretty good.  The anxiety over lowering is real.  The questions rattling in my head are hard to quiet down:  Will the cellcept work at the lowest dose?  Will I end up with another three day migraine on Wednesday?  What’s going to happen if I have to up the cellcept while I am in the middle of lowering the prednisone?  That’s a lot of stress on my body!  Then I, not so politely, tell my mind to shut up.  I have gotten pretty good at distracting myself from the never ending questions and fears.

Yesterday, my parents and I went to a beautiful outside shopping center and did some “retail therapy” and ate lunch at my favorite restaurant (mmm, Cheesecake Factory’s french fries, anyone?).  Then I came home and took a nice, long nap, then read and played on facebook and on my kindle for a bit.  I definitely find it best to keep my mind occupied so I don’t start to worry and stress out over things I cannot change, and really, have no control over.

This morning was it.  I lowered the dose of prednisone.  So now we wait and see how well this dose of cellcept is working.  Looks like I will be distracting myself quite a bit today and tomorrow!

Giving a New Meaning to “Poison Ivy”  ~ Starting CellCept Suspension

By Ivy Shapiro – Jan. 15, 2012  

For me, starting a new drug is like taking the biggest leap off the largest cliff without a safety net…or maybe like playing with a chemistry set and waiting to see which combination of bubbling substances will make me turn into a chicken (feathers and clucking included).  There is quite a bit of anxiety that precedes any new medication, but especially one like cellcept.

Cellcept is designed to be a powerful immune suppressant, working also as a “steroid-sparing” agent.  The main goal with this drug is that it works in place of the prednisone, and also that when the prednisone dose is lowered, flare-ups do not occur.  Sigh…just thinking of that last sentence is a happy place for me, and the reason I have become “Poison Ivy”.

My struggle with lowering prednisone has become legendary with my family and friends.  It’s like being on the worst roller coaster.  I go up on prednisone because I cannot breath, eat, stay conscious, etc…but then I have to go back DOWN once the inflammation from whatever set off the flare-up goes away (usually an illness, such as bronchitis/sinus infection).  It is that “DOWN” that gets me every time.  Each “DOWN”, or drop in dose, cause all of the symptoms that caused me to up my dose, to reappear no matter how small the increment.

The last time I saw my pulmonologist he was not a happy camper that I was not already on cellcept, considering how poorly I was doing trying to lower the prednisone on my own.  I had just been off of antibiotics for a few weeks and lowered from 45 mg of prednisone to 35 mg.  I was finally stabilizing on that dose, but knew I would have to lower again soon, since 35 mg is too high to live on long term.  He called my rheumatologist after I left and we all decided the next week that I should start cellcept as soon as possible.

Here was the main problem:  my insurance.  My insurance would only pay for the pills since they are so much cheaper then the liquid; even though we knew I would probably be allergic to the pills due to all the preservatives in the inactive ingredients.  We were right.  I took one pill and 35 minutes later I started to feel very dizzy and my skin started to sting.  Thankfully, I made it up on my parents’ bed before I fainted because my throat also started to spasm as I was unconscious.  When I came to, my skin felt like it was on fire.  I hoped that because I only took one pill that the symptoms would wear off quickly.  It took seven days for the stinging/itching/burning sensation over my entire body to disappear completely.

My rheumatologist’s office went to work right away with filing for prior authorization to get the liquid version.  My insurance company denied my doctor twice and my appeal.  Thankfully, the manufacturer of cellcept came through and approved the entire cost of the medication through their patient advocacy program for one year.

During the time it took for all the appeals, I dropped my prednisone again from 35 mg to 25 mg.  This drop took two and half weeks for me to even start stabilizing.  I went through the worst depression I have ever experienced.  That is how the last blog came to be “The Art of the Pity Party”.  I was so far into my own despair over basically being locked in my room and on my bed because I was fainting so many times a day that I could not see how that was ever going to get better.  Boy was a grateful when I figured out part of the problem was the xanax.

By the time I started feeling more “human”, it was time to start cellcept liquid.  I was so anxious.  I really didn’t want to go through another full week of burning and fainting.  I understood and accepted that I would probably get some side effects from the medication as my body adjusted, I just didn’t want to start “growing feathers and clucking” (rash and throat spasms).  I took my first dose of the medication when I knew my parents were up and about, when normally I would take it an hour before I eat breakfast.  I did this so just in case there was a problem they would be around to help me.  I read the instructions carefully, twice.  Then I drew up the medication in the syringe, only taking the smallest amount (1 ml) *ok, maybe a little under*…and then I waited…and I waited…and the greatest thing happened…NOTHING!  I didn’t start clucking, I grew no feathers, and I didn’t even sprout a horn!  The worst thing that happened was I became a little nauseous and became extremely tired.

I can’t even tell you how nervous/excited I was each day when the only thing that was happening was bone-crushing fatigue and some nausea.  Those things I can deal with while my body adjusts to this medication, especially after seeing my doctor and getting reassurances that, yes, those side effects do, in fact, go away.  I am now waiting a few more days before trying once again to ride the prednisone roller coaster “DOWN”.  Here’s hoping that this “Poison Ivy” now has the power to make that drop easier! 

I’d like Some Cheese with My Whine Please ~The Art of the Pity Party~

By Ivy Shapiro - Jan. 13, 2012

 I would just like to say that I don’t indulge my need for pity parties often, but when I do, I go all out.  I spend some quality time feeling sorry for myself, being completely negative about absolutely everything life has thrown my way, and cry about over the littlest things.  I rant and rave about how grossly unfair life has been to me and my family and how I can’t seem to find my “way out of the gloom”.

This must sound completely contrary to everything you have heard about how to “act” when you have a chronic illness; stay positive, use positive affirmations to help you when you are down, be grateful for the little things, don’t let lupus get you down, and so on.  Those are all true, and I USUALLY do all of those things, but there are sometimes when emotions pile up, medication side effects cause depression that becomes too much to handle, or my lupus flare up has gone on for so many days that it has just worn me down to the point of utter mental/emotional exhaustion and I give in to the call of the pity party.

I learned early on that these pity parties can actually be healthy if I don’t let them consume me.  I try to be aware of the growing depression so I can talk it out when I start to feel overwhelmed by my bubbling emotions.  I like to think of them like lava threatening to overflow a volcano.  When the doses of my prednisone or the xanax I take for muscle spasms are too high, emotions start to bubble up inside me like lava.  The prednisone emotions are most like anxiety and I can start to become “snippy” with people.  I have learned to take deep breaths and bite my tongue, reminding myself to think before I speak, not wanting to hurt the people I love by saying something I will regret.  The xanax, which I use to control muscle spasms at night, especially the first week or two after I lower my prednisone dose, causes severe depression.  These are the times I need my pity party.

 I find that once I am able to talk out all the negativity with someone and, to be honest, CRY out all the emotions, I start to feel better.  I also make note to lower the dose of the xanax, because, for me, that is typically the signal that the dose is too high, and time to lower.  My Mom makes the best guest at my parties because she also tries to get me laugh at myself and the situation.  Sometimes knowing the tiny violin is there for you near your ear going “ee-er, ee-er” is just the right fix.  She knows that I deserve to feel worn out and fuzzy and that is all I need to get me through the party so I can take a breath.

(This is how I like to think my tiny violinist looks…)

As soon as I stop crying and take that breath, my party is over.  I feel exhausted but like the bubbling lava cooled down and a cloud lifted.  I know that after a good night’s sleep I will be more like myself, definitely more positive and ready to face the challenges lupus is throwing my way.  Next up…liquid cellcept.

The Journey of a Hysterectomy Through the Eyes of a Lupus Patient
By Ivy Shapiro – Dec. 19, 2011

June 6, 2011…I was awake at my “normal” time of 4:30 am (yes, I am a very early riser, thanks to daily prednisone), and feeling a sense of calm and optimism that has been with me for weeks.  My parents, who I live with, were both up and nervous wrecks because this was no ordinary morning.  This was the morning of my partial hysterectomy.

The journey leading up to my surgery started with a pretty funny story, actually.  I was 14 years old and volunteering at a day care center for the summer.  My sister and her college roommate were home for a week, and my sister had just bought a brand new car.  They were sleeping in that morning, so my Dad drove me to the center on his way to work, even though I was not feeling very well.  All I knew, at the time, was that I was very tired, and a little nauseous.  About an hour after I had been there, I started to feel like my right thigh was on fire and sick to my stomach.  I ran to the restroom and was sick.  I realized then, that I had gotten my period.  Luckily, I worked with a wonderful group of women that understood what I was going through.  I called my sister, since both my parents were working, and she grudgingly came to pick me up.  Once I got in her car, she opened the window and told me that if I had to throw up, make it outside.  Well, let’s just say, between the debilitating cramps and the movement of the car that did not happen.  She pulled into a retirement community and left me standing in the bushes while she went to find a phone to call my Mom (since this was before cell phones).  My Mom was LIVID that she left me alone.  Since my Mom worked as a medical assistant in a pediatrician’s office, my sister, after grabbing a towel from the trunk to put my head into in case I had to be sick again, drove me to her office.  One of the doctors examined me, and said I would have to see a gynecologist to get checked out.

 

My first trip to the gynecologist at 14 years old was terrifying to say the least, but the doctor made me feel as comfortable as possible and explained everything that was going on.  She also told me that I “probably” had endometriosis and would have to start on the birth control pill to control my symptoms.  She also gave me an anti-inflammatory to take a few days before my cycle was supposed to start, to hopefully control some of the pain.  I can honestly say that from the time I started that first pill, to the time I was diagnosed with SLE at age 29 and was taken off the pills, I tried every single one, estrogen based, progesterone only, monthly, in 3-month cycles, even no cycles at all.  Nothing helped, and as I got older other symptoms cropped up, including heart palpitations, “asthma-like” issues, joint inflammation, stomach issues, and the list goes on.  The longer the list, the more difficult it became to treat and diagnose my real illness.

 

College came and that’s when the situation became dire.  From ages 19-24 I was extremely ill, but only sporadically, and always with a triggered event, like brush fires, cigar smoke, upper respiratory infections.  The events were ALWAYS helped by high dose steroids.  I managed to finish my degree in Exceptional Student Education from FAU in 2004…but that is the year my illness became too much to bear.  It became obvious that staying on prednisone continuously was the only option at that point.  As much as I kept telling the doctors that my illness was “cyclical” not one of them was paying attention to the obvious cause.

 

Five years later I was diagnosed with SLE.  Once the diagnosis was made things started to click into place, one extra piece at a time.  I went to my gynecologist one day and told him about how horrible I was feeling every month, for 2 ½ week out of the month.  It started when I was “supposed” to ovulate and it lasted until I “should” have gotten my period.  I was on the progesterone only pill at the time and sicker then I had ever been.  I had migraines starting at that ovulation mark that lasted days, and with the migraines, I had syncope (fainting) episodes, nausea, throat spasms, back spasms, heart palpitations, nightmares, even an increase sense of smell/hearing.  He told me to do a trial of getting off the pill and see how it went.  He even told me that because of my lupus and prednisone, I might not ever get another period again.  Well, the prospect of that was amazing!  I stopped the pill the next night.  Two days later I felt like a new woman.  I had six weeks of no symptoms.  I felt so incredible that I even thought the doctor might be right, and maybe I wouldn’t be getting my period again…and then, exactly 6 weeks to the day after I stopped the pill, I fainted, and got a 3 day migraine, and exactly 2 weeks later, another 3 day migraine, followed by my period.

I knew I needed to do something about my periods.  I was so fed up with living only half of the month.  Once again, things were getting worse, more frequent.  By 2011 my rheumatologist and I had exhausted the most common and, frankly, the least toxic of the steroid-sparing drugs.  He was not excited about starting me on CellCept because I am so sensitive to everything.  His suggestion was for me to find a reproductive endochronologist, since my SLE and autonomic issues (like the fainting and stomach problems) seem to be triggered by my hormones.  Of course, reproductive endochronologists are not covered by my insurance, so this was going to be pricey.  It turned out to be well worth the money!  When I saw him he decided to treat me with a drug called lupron, which is a daily injection, used to put me into early menopause.  This would be the test to see if how I would handle being in menopause if I were to get a hysterectomy.  It took a little longer then the doctor thought, but sure enough, after 1 ½ months on the medication, my lupus went into remission, as did my autonomic issues.  It was like I could be ME again.  That is when I made the appointment with the surgeon.  It was time to reclaim my life.

 

I had met this surgeon before.  He had even performed a hysterectomy on my grandmother, which saved her life.  I trusted him completely.  So when I walked into his office, told him about what I had been through, the medication trial that was working, and what I was hoping for, I was anxious as to what he would say.  Not all doctors would perform a hysterectomy on a 30 year old woman.  Thankfully, he knows how sick I had been, and although he asked if I realized I would be unable to bear children after the surgery (which I understood, and was fine with…there is always adoption), he was willing to perform a laparoscopic partial hysterectomy.  He explained that he would be removing both my ovaries, fallopian tubes and the top part of my uterus.  Leaving the bottom half of the uterus allows the pelvic floor to remain in place and prevents me from requiring future reconstructive surgery.  He did tell me, however that I would need replacement estrogen after my surgery, to which, I was not happy.  He did agree to see how I felt after the surgery, before starting me on anything, but assured me, that a woman my age, would need it, so my bones didn’t crumble, my skin didn’t dry up, and I didn’t get “crazy as a June bug”.

 

I booked the surgery that day for 4 weeks later.  June 6, 2011 was the calmest I ever felt going into the hospital.  I knew deep down that everything was going to work.  I knew this was the answer.  The only thing I didn’t know going in, was that I would be given a booster dose of steroids before my surgery.  I am glad no one told me this before, because it would have been an added stress for both my parents and myself.  Once I was in the operating room, I was told to scoot onto the operating table, to lie back, move my arm over, and then someone said “this may sting because we can’t give you lidocaine” (one of my many medication allergies). That was the last thing I remember before I woke up in recovery.

 

I woke up moaning…in pain.  The nurse was right there asking me where it hurt and I told her my right side.  She gave me some pain medication, but I just kept moaning, so she gave me more (I think just to make me be quiet).  I thanked her and closed my eyes for what seemed like a few minutes.  When I opened them again, she asked if I wanted to sit in a chair.  I told her I felt like I had to use the bathroom.  She said that in order to go home (since this was an outpatient procedure), I had to urinate.  Problem with that, is with my autonomic issues, my bladder doesn’t like pain medication or pain for that matter, and tends to spasm up with either one.  Well, I had a combination of both going on, particularly in that region.  It took three tries, and four cups of apple juice, but finally I was able to go home.

 

I honestly don’t remember much of the first few days after my surgery.  What I do remember was that I could not lay flat, stand up straight, and I was extremely grateful for my pain medication.  I only took the extra pain medication for the first four days after my surgery.  I tried to walk around as much as possible, per doctor’s orders, to get up all the air he pumped into my abdominal area.  I just wanted to feel better.

 

Two weeks after my surgery I went for my post-surgical visit and the doctor said I was doing great. He showed me the surgical pathology reports and I was amazed that he actually found both endometriosis and adenomyosis.  Both problems can cause flares of lupus as well as the symptoms I was experiencing on their own.  It was so validating to have everything I had been through confirmed!  I was incredibly glad I had the surgery done in that one instance.  He was also surprised I wasn’t already having hot flashes, but I really was starting to feel more like myself.  I was still very tired and pretty sore, but overall I was happy with my recovery.  Then the let down…about a week after that visit, sure enough, my first hot flash, promptly followed by fainting and a migraine.  I was so upset!  I made an appointment to see my doctor so we could discuss my estrogen replacement options.  Since my insurance was denying the form he wanted to prescribe (a patch form), he opted for a 1 mg pill.  He said I would need a full dose, since I am a young woman.  I was wary of this, since I know my body, and know how sensitive I am with medications.  I did agree to try, though, since the fainting and hot flashes had become a daily occurrence.

 

I became a chemistry set.  Unfortunately for me, I never did well in that subject area in school.  It was a very tricky matter in how much estrogen to take…I tried every conceivable combination with the 1 mg pill, even going every other day, to no avail.  Finally, I tried ¼ of a pill every day, and low and behold, it worked!  So far I have been feeling more like myself, have not had any fevers, fainting episodes, or migraines.

 

I am by no means “cured”.  I will always have lupus and autonomic dysfunction, but now I will have a better chance at a normal”ish” life.  I never cared about “normal”…I only want to LIVE, instead of survive the days, and there is no better time to start then NOW !