LUPUS

Sometimes I like to sit in the middle of the road.

A few weeks ago I asked if anyone was interested in hearing more about lupus since I mention it a lot on this blog.  I got a pretty big response and so here I am, writing on lupus-- what it is, what it does and how it has affected me.  I am going to try and break it down so that it is really simple, but the honest truth is that lupus (and really all auto-immune diseases) are very deceptive, unexplainable, and most of the time very complicated.

What Is Lupus?
Here is the science behind it, in the most simple way I can think to phrase it. Lupus is an incurable, chronic auto-immune disease.  It can damage just about any part of the body, but mostly effects joints, skin and organs. Lupus causes the body's tissues to attack its own immune system. For example: in lupus, something goes wrong with the immune system (the part of the body that normally fights off infectious and foreign agents in the body. Normally, the immune system produces proteins called antibodies that protect you from these invaders that could cause illness. Auto-immune means that a lupus patient's immune system cannot tell the difference between these foreign invaders and healthy tissues in the body and then creates antibodies that attack and destroy healthy tissues in  the body. These autoantibodies cause pain, damage and inflammation in all different areas of the body. Lupus doesn't discriminate and every patient experiences different complications with the disease.

Are There Different Types of Lupus?
Yes.  There are four types total, but I am just going to talk about two here, SLE and Discoid Lupus.

Discoid (Or Cutaneous Lupus Erythematosus): This type of lupus is limited to the skin only.  Commonly, these type of patients deal with a rash that looks similar to eczema on the body. Also, these patients will have a rash across the cheeks and bridge of the nose, as well as shiny red discs on the face.  This is the common "butterfly rash" and can cause permanent changes in the pigment of the skin on the face and the body. Sometimes these patients only ever have skin issues, but 10% do develop the more serious Lupus SLE.

Lupus SLE (Systemic Lupus Erythematosus): This is the most common form of lupus and ranges from mild to severe.  This is the form of lupus I have, and I have a severe form of the disease.   Some of the more serious complications from this type of the disease are: inflammation and ultimate kidney failure, increased blood pressure in the lungs, inflammation of the nervous system causing memory problems, confusion, headaches and stroke, inflammation of the blood vessels causing fevers, seizure, behavorial changes, coronary artery disease, etc.

Lupus: The Facts

• Lupus is a disease of "flares" meaning one can worsen (increased symptoms) and go into remission (periods where symptoms improve and one feels normal).  
• Lupus can be life-threatening when untreated, but most people can live a semi-normal life with regular medical care. 
• Lupus is not contagious.
• Anyone can develop lupus, but it mostly affects women of childbearing ages (15-44). Anyone who develops lupus has always had the disease dormant in their body and it is not known was triggers the disease to activate. 

My Story With Lupus

Lupus made an appearance in my life in a very obvious way almost 4 years ago, although I wouldn't know the cause until several years  later.  At the time I was working as a make-up artist at the Clinique counter at my local Macy's. It had been a few months that I had been experiencing unusual exhaustion. I was 22 at the time and thought I was simply doing too many things-- I worked, went to school and was very social.  I would wake up too tired to brush my hair, and the girls at the counter always joked about my messy top knot, lack up make-up and wrinkled uniform.  In fact, one time my boss actually asked me if I owned an iron. (She was serious).  But that is another story.

The point is, I was feeling too tired to even maintain myself and come into work clean and professional looking.  I had no idea why and kept trying to make the best of it.  One day in early spring when I was working at the counter I looked down and noticed what I thought was tiny dots of pen splatters on my feet.  Upon further examination I realized it was not an ink pen that had broken and splattered on me, rather it was tiny spots of blood under my skin that was increasing and moving up my legs at an alarming rate.  I left work and went home to show my mom .  We waited a while and when it reached my torso we decided to head to the local Urgent Care.  

When I arrived at Urgent Care the doctors had no idea what was wrong with me.  They took blood from my arms and the pressure the put on my arm to hold it in place left small bruises almost immediately. When my gums started to bleed and small specks of blood appeared in my eyes they decided to send me to the hospital in an ambulance.  They thought I had a blood clot and needed immediate care at the emergency room.  I called the husband, who was then the boyfriend (the NEW boyfriend might I add) and told him where I was going, but that everything was probably okay and I would call back in a while.

Once I arrived at the hospital they admitted me.  The spots were all over my body and the IV's left deep purple bruises that continued to bleed.  The doctors had no idea what was wrong with me, but knew I was experiencing ITP: Idiopathic Thrombocytopenic Purpura.  ITP is the condition of having an abnormally low platelet count.  Platelets are what keeps the blood "sticking" together, so when you get a cut or wound you don't bleed to death.  My platelet count was 4 per slide.  Not 400. Not 4,000.  FOUR.  Unless you are a doctor or are medically inclined you should know that this is pretty much impossible.  I practically had no platelets in my blood,  normally we have anywhere from 150-450,000 platelets at any given time.  Needless to say, this was pretty bad and I was given a few transfusions of platelets and put on prednisone in an insanely high dose.  I had an idiot doctor who first told me and my family that I had leukemia and then wanted to operate and take a bone marrow sample to verify it, and also remove my spleen.  He also brought in students to "review" my case because he was baffled by it  and his students had never seen purpura to the extreme that I had it AND he wanted to operate for "study purposes". Thankfully we had our wits about us enough (okay, mostly my mother who basically told him to eff off. True Story) to request a NEW doctor.  (Only later did we find out how dangerously low my platelets were and if the doctor had operated I most likely would have bled to death on the operating table... Talk about an idiot).  My new doctor, head on the oncology department increased my transfusions and kept me on a steady supply of the steroid and pain medicine.

I didn't get any worse, but I did't get any better and a day turned into two, turned into four, turned into seven.  Finally when my doctor ordered IV/IG treatments (something you don't really ever want to experience) I started to show a turn around.  The IV/IG treatments basically pump plasma that has been filtered and pooled from over one thousand donors.  The stuff cost a lot (basically I have the price of a house in blood in my body) and is super painful. I had two treatments that lasted about 6 hours each and I could literally feel the stuff making its way through every vessel in my body.  It hurt you guys.  And it, coupled with the steroids made me huge.  I gained probably 20 pounds.  You think I am joking, but I am not.  The steroids also made me a crazy person.  I was irrational and angry and hated everyone around me.  Thankfully I had my family who stayed with me night and day and also my Jonathan who I really fell in love with that week.  He had just started his FIRST job out of grad school and worked during the day and drove to stay with me afterwards, and then got up and went back to work the next morning.  During that week of not knowing what was happening to me (and literally wondering if I might not make it) I realized he was the only man that I ever wanted to be with.  We were new in the relationship but those days really defined and cemented our relationship.

I left the hospital without a diagnosis-- my doctor wasn't sure what had happened to me, and was hoping some sort of freak virus had caused the episode and that it wouldn't happen again.  I monitored my platelets for a few months and life went on.

Fast forward a year and a half.  

I was a newlywed and was loving life.  Things couldn't be better but I had still never managed to get over that constant feeling of exhaustion.  It wasn't until we moved to Indiana that some weird things started to happen.  The first sign that something was wrong was the frequent black-out episodes at the gym.  I couldn't breathe or keep up with woman much older and much more "out of shape" than me and I couldn't understand why.  One scary day in particular I got nauseous and left the bootcamp class, and as I rounded the corner into the locker room I lost my vision, my limbs went tingly and I got very cold and then scariest of all--I lost my  hearing.  The whole thing probably happened in 60 seconds or less but I was freaked out.

Around that time I also started to notice losing hair in the shower.  Now, I have a thick head of hair and generally lose hair anytime I even brush, but I was losing way more than normal.  I had also started to develop pain in my wrists, fingers and ankles around bedtime that lasted through the night and for a few hours in the morning.  In generally wore off a few hours after I was up so I chalked it up to doing too many pushups and weight trainings at the gym. I had also developed a weird rash on my face.  I thought I had gotten a sunburn from when we were living in Indiana that had just never gone away.  My energy was at an all-time low but I still didn't think something serious was going on.

Fast Forward Again.  We are living in Colorado Springs.

3 more months passed and we had moved to Colorado.  My joint pain was increasingly worse-- like, so bad that I couldn't chop vegetables or brush my hair.  I started to talk to my mom about it and learned we had a history of rheumatoid arthritis in the family. I despaired over the news because I just knew that is what I had.  I read up on it and learned it can really debilitate and cause problems down the road.  I consider myself a pretty active girl and hated to learn that might be jeopardized because of something I had no control over.  I was upset, and made a doctor appointment to get the blood work that I knew would determine I had arthritis.

I went to the doctor, told her all of my weird symptoms and she ran the tests.  She told me she would call me with the results but a few days later the office called asking that I come back in to pick up the paperwork.   I had also made a dermatologist appointment about the weird rash I had on my face for the following day.  Meanwhile I went back to the general practitioner's office and the doctor didn't tell me what she thought was going on, but rather suggested I see a specialist, a rheumatologists and handed me a sealed envelope and told me to take those to the next doctor I would see.

Of course, I went home and ripped open the envelope.  I couldn't make out what any of the blood work meant, but I saw that I had an ANA that was positive and she had handwritten on the paperwork:  lupus? I remember that moment well, I just knew that I did in fact have lupus.  I can't tell you how I knew, I even told my husband (before I had seen the blood work results too) that is what I had.  I had never even HEARD of lupus before but something made the word pop into my head and it wouldn't go away.  I was devastated.   The same day I got a call from the dermatologist that the rash was a lupus discoid rash.

I remember the next few weeks well--- going to the rheumatologist, doing a slew of blood work and hearing that I not only HAD lupus, but I also had the most serious form.  The form that damaged and attacked organs, made it difficult to have a normal pregnancy and would most likely mean kidney failure for me at some point in my life.  I drove home from the office in Denver and cried the entire way home.  I remember it.  I just let myself cry and be upset and think all of the worst thoughts possible.  Jonathan was just as upset as I was, and we weren't sure what everything meant.

There were a few things to be thankful about during all of this-- the RA that I had in Denver was amazing.  She was probably the smartest doctor I have ever met, and she talked me through it and made me feel like it was going to be okay.  We discovered that I was prone to kidney failure and a blood disorder (flashback to the ITP incident).  I went to a lung doctor and discovered that inflammation from the lupus had caused a slight hardening of my lung membranes making it difficult for oxygen to diffuse properly (as a result, I wouldn't get enough oxygen which probably resulted in those black-outs at the gym).  My RA was amazing and put me on the most mild dose of medication possible and agreed that I should stay away from steroids unless I absolutely needed to.    I went onto a dose of Plaquenil (aka hydroxychloroquin) which initially caused some serious side effects.  It took roughly three months for the medicine to kick in so it wasn't until the fall of 2011 that I finally started to feel some relief from this disease which had so aggressively come on.

Life With Lupus Now
Today I can say that I am in the best place I have been, but that doesn't mean that everything is sunshine and unicorns.   It is so nice to know that on the days where I feel like I don't even have enough energy to crawl out of bed (yes, those days still happen) are normal.  On those days Jonathan steps in, makes dinner and does whatever possible to make life easier for me.

I still really struggle with exhaustion, sometimes it comes on out of nowhere.  I have learned to pace myself and choose which activities are the most important for me to accomplish on any given day.  Yes, sometimes that really stinks when I want to go sight-seeing, AND workout, AND make dinner, AND clean the house, AND keep up with this blog.  On those days I just have to choose and I have learned to be okay with that.  If I push to hard, or do to much I know that I will go into a flare and be down for the count for several days.  I am getting better and better and managing that and not doing too much so I never get to that "flare" stage.

I also struggle with memory loss, a lot more than I would like to admit. Most of the time it is small things like forgetting to return an e-mail or forgetting something someone said.  I forget names of doctors and telephone numbers like I am a 75 year old.  I also remember back in January legitimately forgetting how old I was (I knew I was either 25 or 26, I just couldn't remember which) and bursting into tears in front of Jonathan.  I laugh about it now, but is is kind of scary to forget important things, and it makes me scared for when I have kids because I don't want to forget something that could put them in harm's way.

I also have already dealt with the issue of trying to conceive and stay pregnant.  Lupus sees things in the body as foreign invaders, even when they aren't and works to attack and effectively destroy them (like a fetus) so while it is not impossible to carry a pregnancy to term, it makes it very difficult and is considered high risk.

While my lungs have been damaged I am no longer using an inhaler or an medications for that, I simply pace myself and have learned my limits.  I also get my kidneys checked every 6 months to ensure no damage or signs of failure are showing.  My medication can cause blindness so I also get my eyes checked every 6 months to ensure it is not damaging my eyesight.  I also have to make sure I do not get sick or am not around anyone with a contagious illness...  my medications keep my immune system acting at only 20% (the idea behind this is when my immune system is active it attacks itself, so keeping it "low" decreases these attacks).  This is great, but I am way more prone to getting sick and it causing a super flare so I am constantly worried about germs.

But like I said in general, I am managing better and better everyday.

If You Know Someone With Lupus
A lot of you said you know someone with lupus but you don't understand it, and that makes a lot of sense.  Most people with lupus LOOK completely normal.  That was one of the hardest things my husband had to reconcile when I was diagnosed....he didn't get it, because I looked fine and he couldnt' visually see what I was experiencing internally.  I promise your friends with lupus would love to go out and spend time and do everything possible with you, so when they decline that dinner invitation or don't reply promptly to your e-mail, cut them some slack.  Lupus varies from person to person and from day to day.  It is deceptive and evil-- one minute you think you are fine and the next you are feeling like a semi-truck hit you.

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If you made it through all of that you are a trooper!  If you have any questions about anything,

please, please, please feel free to ask me.  Any questions you have, I am going to post here so check back for an answer.  I want to do it publicly so if anyone has the same question they can find the answer!

Q: Have you found changing your diet has helped with your symptoms?
A: Absolutely. I went from eating basically whatever I wanted to totally changing my everyday diet.  I have found that eating organic, clean veggies and fruits paired with protein has been the best for me.  I have switched to only whole grains, all white sugar and soda.  I do indulge when  I go out to eat, and I allow myself to eat the things I love, but in general you will find a pretty fresh supply of foods in our home and we try and eat pretty healthy and minimize dairy and cheese during the week.

Q: Is your skin still bothered by this?
A: Yes!  I forgot to mention it in the post, but the sun can trigger a flare so I have to be careful not to spend too much time in the sun (so long days of being a bronzed beach babe!).  I now wear 100 block and at minimum have 50+ block on my face at all times!

Q: Is Lupus genetic?
A: While the cause is not known and it isn't certain whether or not this is a genetic thing, all signs point to yes.  However, anyone can have this, even if there is no history in your family.

Q: What is your treatment consist of now? Will you take medicine forever?
A: Yes, I will most likely always be on medication to moderate my immune system. If things took a turn for the worse I most likely would add a steroid to my daily drug regimen.  Currently, I visit my RA at University of Michigan twice a year. During these visits we talk about my symptoms and currently she is trying to chart a pattern of flares and remissions for me.  I always do bloodwork which shows how "active" the disease is at any given time.  I have also opted to donate upwards of 30 vials of blood per blood draw (that is a lot if you were wondering) which goes to U of M to research lupus with.  It is my hope that my small addition of blood will help doctors and scientists get that much closer to unraveling the mystery of auto-immune diseases. I also get my kidneys and eyes checked every 6 months and take a dose of Plaquenil in the morning and at night.  I count myself pretty lucky to not have to be on the more serious drugs like steroids and that my lupus is manageable with minimal medicines. 

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