Swerving Out of Control

The rashes did not fail me, and in fact were just getting worse.  I was still getting calls from the school and I would go up there, take pictures and tell the teachers to just let her go back to class.  She thought I was the meanest mom on the planet because I would not take her home.  But time came to head back to the rheumatologist. 

I walked into his office with all the pictures I had been taking.  When I showed them, without any hesitation, he let me know I had lupus.  “I knew that is what it was, but I wanted to make sure because it acts like a bunch of other diseases.” 

Lupus is an autoimmune disease that is chronic and cannot be healed.  Lupus is when your immune system decides to attack the healthy cells, tissues and organs in your body instead of protecting it from the enemies.  Your body is literally at war with itself. 

There are different types of lupus, from medicinally induced to skin, to the one I have, systemic lupus erythematosus (SLE) which attacks your systems and organs.  Lupus can affect your skin, joints, kidneys, heart, lungs, and brain.  Yes, I said brain.  So if you ever really wonder what is wrong with me, I am going to say it has affected my brain and that is why I am crazy.

While I was there, I talked to him about Stormy.  I showed him her pictures.  He told me to have her doctor do an ANA test on her because it can be hereditary.  The problem was that Stormy was 10 at the time.  There were no pediatric rheumatologist anywhere close, but because I had it, if her ANA came back positive he said he would take her for me.

Y’all, that does not happen very often, and there was only one person to thank for that and that was the Lord.  We discussed the fact that this could not be cured.  This was something I would have to live with the rest of my life, and they could only try to protect the organs and hopefully help the flare ups.  He told me he could help manage the flare ups, but I would still have them, they are completely unpredictable, and we would work to get my immune system under control as best as possible.

Pit Stop

Systemic Lupus Erythematosus (SLE) is something that you are born with.  There are some lupus conditions that can be triggered by medicine, but this one is not.  That confused me.  Why didn’t I have symptoms before?  How could I have been a life guard all those years and it did not affect me.  How could I have tanned in a tanning bed all that time and it never showed. 

Lupus can lay dormant.  You can have lupus your whole life and never know because it was dormant.  But something can trigger it.  A sickness, stress, a wreck…..child birth.  Anything that is a kick to the immune system and cause it to come out of dormancy.  More than likely, having Stormy kicked it in overdrive.

He also said I had Fibromyalgia.  It usually goes hand in hand with lupus. This is wide-spread pain all over the body.  It is like your nerves are acting in overtime.  It causes fatigue, sleep problems, thinking problems and “brain fog” as well.  It can also cause anxiety, depression, headaches, and irritable bowel syndrome.  Even though fibromyalgia is chronic life long condition with no cure, it typically does not get worse or cause any damage to the body.

Even though he did not diagnose me with rheumatoid arthritis, he said he would not completely rule it out because I have had 2 positive R factors (the marker for rheumatoid arthritis) and 1 negative.  Lupus can cause arthritis that is not rheumatoid, but like fibromyalgia they all sort of go hand in hand. 

Damn.  That is all I could say.  Who did I get it from?  I have no idea.  I am adopted, although I don’t think of myself as being adopted because I look and act just like my mom.  And that is who she is….my mom.  Not my adopted mom and dad.  They ARE my mom and dad.  But when it comes to medical stuff, it gets a little more complicated.  We don’t have hardly any information.  Stormy’s father was adopted as well.  Needless to say, we are writing her medical history as we go, and it is not looking so hot.

The next day I made an appointment for Stormy to get blood work done.  When we went to the doctor, and his response to me having blood work done on her was, and I will never forget it, “Oh my God Jill, what WebMD site have you been reading now?”  I told him I had just been diagnosed with SLE and I had shown the pictures of her rash to the rheumatologist.  THAT doctor said to have it ran and if her ANA is not positive no worries.  I’m paying you, so just run it.  What is it going to hurt?

The next day I get a call of apology.  Stormy’s doctor called and told me he owed me an apology.  He got her test back, and he had never seen that high of a ANA on someone so young.  Because it was so high, he referred her to my doctor and we were on our way back over there.

Needless to say, Stormy was gifted with the same ailments and I had.  Trying to get a 10 year old to take medicine was a nightmare.  And getting my 10 year to take medicine was more of a nightmare.  She would hide it under her tongue and spit it out, tell me she took it and didn’t.  I have decided there is no one better at lying and hiding stuff than a 10 year old little girl who is determined not to do something.

Over the years, I have done a lot of reading on lupus.  Y’all, this shit is no joke.  I go to a doctor about something, they find out I have lupus, and instantly the diagnosis is “It’s your lupus.”

Stop for a Beer

When COVID hit, they would say if you have a autoimmune disease it can be really bad.  Of course my response to that was if the Lord feels it is my time, then it is my time.  I survived going up riding my dads lap while driving, sliding down metal slides hotter than the devils tongue, drinking from a water hose, and riding bike without a helmet.  I learned to drive when I was 8.  Surely a virus named after a beer would not take me out.

Until I got it, and I thought I was dying.  3 weeks of miserable headaches, fatigue worse than I already had, walking pneumonia, and not being able to taste or drink (all during Thanksgiving mind you) was no fun.  I was more upset though about missing Thanksgiving.  But mom and dad brought us a plate.  That was absolutely awful!!!!!!  It was like eating a wet sponge. 

Remember me talking about the other things affecting your brain?  I don’t know if you have had COVID, but most people who have had it talk about the COVID brain fog.  Y’all I couldn’t even spell my name!!!  Now I am not a complete idiot.  I graduated with honors from high school, but you would never know it.  When I talk I sound drunk a lot of times, I can’t spit out words (which I had enough problems with prior to COVID), and I my brain works faster than my mouth.  COVID only accentuated this.

I have had COVID 3 times now.  It affected my thinking and speaking, my mood, my eyes (I literally have to wear bifocals now) and I always feel like crap now.

There have been lots of different things that have affected my lupus or have been caused by it.  Swelling of my legs, feet, and hands.  Stomach bugs have landed me in the hospital because my platelets drop.  Every time I go in for something, they blame it on my lupus.  Even pre heart attack (that is another story for another time) was blamed on lupus.

Shaky Transmission

I had done a lot of research on it.  But nothing prepared me for the latest drama.  I did not know they cause seizures.  I have started experiencing what I call phantom smells.  I smell something that no one else can smell.  It smells like burning cleaning fluid.  Like Fabuloso on Fire.  It is AWEFUL!!!!  I have the shakes really bad.  I will jerk in my sleep and it will move the bed and wake me up.  The smells give me migraines and wake me up in the middle of the night.

Now I really think I am crazy.  But one morning, I woke up and was really dizzy.  I could barely take a shower because I thought I was going to fall.  I drove to work, but I felt like I was drunk.  Haley was living at home at the time with my new grandbaby while her husband was deployed.  She decided her and Adaline would come see Gigi at work.  When she walked in I told her I was really glad she was there because I didn’t feel too good.

The shakes were horrible.  I could not even hold a glass of water.  I work with my best friend and her husband is on the ambulance.  He had to come do some business so she asked him to bring something to check my blood sugar. 

I began throwing up at work, I was supposedly repeating myself, and very very shaky.  Haley decided I needed to go to the ER, so they loaded me up and head to the next town to the hospital.  I told Haley I needed to pray, and that there was a man in black following us.  Creepy right?!?!?!

It was extremely foggy that day, to a point you could not see far in front of us.  She said when I stopped praying, the fog literally cleared out and we were at the hospital.  I remember the nurse asking me my name if and I knew where I was.  I remember looking up at the sign to make sure I was saying the right thing.  Next thing I know I have people standing all around me, yelling at me, and I am in the hospital.  I kept trying to explain to them I felt like that was all a dream that was going to come true.

Fog Lights

I could not explain it to them.  It was like I was in a dream.  With wet pants. And all the people who were around me, I knew most of them because of my work.  I see them or talk to them all a lot.  They needed a urine sample, but it was all down my legs.  When I say I was beyond embarrassed, I mean I wanted to crawl in a hole and die embarrassed.  These people I deal with so much are now having to catharize me.  It is hard to look at someone when they have seen parts of you only someone really close to you should see.

I kept apologizing, but I still did not know what was going on.  All I knew was it felt like I was having a dream that was going to come true, people I knew were seeing parts of me I did not want them to see, and I had pissed my pants.  And my tongue hurt.  Like really really bad.  And I could taste blood. They let me know they were waiting for the ambulance to transport me to a bigger town and hospital.  They wanted to do a CAT scan and could do it there.  I remember Haley and Stormy coming in and they looked absolutely terrified. 

“What is wrong?  What is going on?  Where is Adaline?  What happened?” 

Mom, you had a seizure.  A bad one.  A Grand Mal seizure.

After all that praying, all I could say is “What the F$#%”  Haley said told me when we got to the ER she ran in to get help, they came out, asked my name and where I was.  She said my head flew back, my arm went up, and I began convulsing.  She said I was convulsing so hard, I woke up Adaline in the car seat behind me because I my seat was hitting it so hard. She said I was foaming blood from the mouth.

I just knew I was still in a dream.  I was panicked because I thought this is something that was going to happen, not that it had happened.  Poor Haley, she thought she had lost her mom. 

My girls grew up that day.  They both stood there looking at me like I was a ghost, like I died.  This was one wild wild dream.  This was not something I wanted to come true, but I had this feeling like it would.  They thought I had had a stroke, but they were not sure.  I had never had a seizure before.

Y’all, apparently it was not a dream.  It was all true.  All of these things happened.  I don’t remember the ambulance ride.  I don’t remember being in the hospital.  I don’t remember much from those two days. 

They never really knew what caused it while I was in the hospital.  They blamed it on medicine, stress.  They said they just did not know.  I had a regular 3 month follow up with my rheumatologist a couple of days later.  She asked if anything had been going on, and I told her what had happened and they didn’t know what caused it.  She looked me straight in the eyes and said lupus.  It was your lupus.

Excuse me?!?!  In none of my research did I see anything about seizures.  11 years, and no one ever told me that was another symptom of lupus.  She explained to me that lupus has so many different ailments there is no way to list them all.  Usually it isn’t until you experience something that we can say yes that is lupus or not it is not, the list is just too long.

She let me know that I definitely needed to follow up with my neurologist.  I made an appointment that day.  He was able to get me in that week luckily.  If you have ever had to see a specialist, you know it is not a quick process unfortunately. 

Talking to the Mechanic

At that appointment, I explained to him that I have the phantom smells and how I thought I was going crazy, and that I had had a Grand Mal seizure.  Instantly he told me it was my lupus as well.  He said, “I have seen your brain and it is beautiful.  You are not crazy.”  That made me feel good even though I sound crazy. 

He told me a couple of things about these phantom smells.  One, is a lot of people have complained about this since having COVID.  He said just that week he had multiple people in talking about smelling random stuff.  He felt it was a side affect of the virus, and then he followed it with a BUT.

He said there are a lot of different types of seizures.  Not all make you convulse.  Some make you black out, some make you shake a little, some make you jerk, and some are the major ones.  Phantom smells are a cause by seizures.  The nerves in the nasal cavity begin to convulse, and it can cause you to smell things that are not there.  Typically a burning type smell is an indication of a seizure, or what leads up to a major seizure.  These smells are very common amongst epileptics. 

I’m not epileptic.  I have never had a seizure before.  But those smells, the night jerking, the shaking, the Grand Mal are all indications of an epileptic.  And these are all common amongst people with SLE.

Shit….could my list of health problems getting any longer?  At the hospital they told me I could not drive for 3 months, but he added another 3 to it.  He told me if I have any of those smells, a little shaky, or uneasy feeling not to get behind the wheel.  No long distance driving.  Right now, he was not going to submit it to have my license revoked, but if I had another Grand Mal, I would have to give up driving.

He put me on medication, and told me I was not to go without it.  This made my medication list to a total of 17 daily.  I feel like a druggy, but none of them are brain altering.  They are keeping me alive and going.

I still work full time.  I still take care of my home and little farm full time.  I have tried very hard not to let any of it slow me down too much.  Granted, Stormy and Arnie have had to help me more with the animals.  I have trouble grabbing the feed bags sometimes, or when I get home from work sometimes I am just done for the day.

If I have been smelling those wonderful smells, which I still do quite a bit, I come straight home and rest.  I don’t want to experience that again.  Or if I am a little shaky or have jerked quite a bit that night, I don’t do anything but straight to work and home.

My lupus is always acting up.  The weather affects it.  Stress affects it. Everything makes it and the fibromyalgia to flare up.  Just wearing a bra to work everyday makes me so sick to my stomach that by the time I get home, I am in horrible pain.

Anything tight fitting hurts.  Sometimes, even the sheets on the bed feels like someone is stabbing me.  Even sitting and laying down hurts a lot of the time.  Its very hard for people to understand.  It’s hard for people to understand when you are in constant pain. 

People tell me I need to start walking, or exercising.  I need to get my body moving.  Honey, if it didn’t hurt so bad I would.  I have tried over and over to do exercise programs, only to hurt my back and end up on a walker for months at a time.  I have always been very active, until the last year or so.  And the last year I feel like I have fallen off a cliff.  It takes every bit of me to get up and go to work everyday. 

We all know how our bodies feel.  We know if something isn’t right.  If you are going through something like this, please do not give up hope that they will never figure something out.  Be persistent.  Stay on top of the doctors.  It took them 8 years to discover my gall bladder was not working.  It was miserable for 8 years.  It took them 10 years to discover I had lupus.  That is still miserable.

And it took me having a massive heart attack at work and 3 months of pure hell for them to finally believe me there was something wrong.  Even after all the ER visits and me telling them something was going on with my blood pressure, the chest pains, nausea, shortness of breath, I could not get anyone to listen.

Road Side Service

If you have going through something like this, know you are not alone.  It is very hard not to just throw in the towel.  It is very hard when people do not believe you or think it is an excuse to not exercise, or do things. 

One last bit of advise, don’t let it get you down either.  Life is short, and tomorrow is never promised.  Do your best to get up and continue on.  Your mind is a powerful thing, so use it.  Be your own cheerleader, because sometimes that is the only cheerleader that matters.  God is not done with you yet if you are reading this.  That means your story is not finished.

Finish you story and finish strong.  God has a purpose for you, and until he is done with you, you have to try to fulfill that purpose.  We don’t know what it is.  Maybe it is writing long, drawn out post on a blog so that it touches someone else’s life. 

Maybe that purpose is to help a friend in desperate need.  Only one person knows what that purpose is, and that is our Lord and Savior.  I have said it a hundred times I have a horrible potty mouth.  Maybe my purpose is to show others how horrible it looks when I use my potty mouth.  Who knows?

Or maybe it is to make others laugh at my downfalls while showing them how not to do things.  I have absolutely no idea what my purpose on this planet is.  I do know one thing is for certain, he is not done with me yet.  There is a saying I know you have all seen before that says, “Live life like someone left the gate open.”  I fully intend on doing that. 

No matter how bad I hurt, how down in the dumps I am, how tired I am, I will do my best to laugh and have a positive attitude.  It is what can keep you going sometimes.  Always try to be positive, because negativity is Satan’s favorite weapon.  And when life gives you limes, mix it with tequila and toast to it and tell it to kiss your Kester.