Lupus, what a joke! 

I was diagnosed with this horrible sickness five years ago.  I had been dealing with many of the symptoms for ten years prior to this.  I couldn’t find a doctor for TEN years who could figure out what was wrong with me.  Ten years….ugh!  I honestly began to wonder if I was losing my mind.  They kept telling me I was just dealing with depression.  As if depression is not a big deal.  The problem was I wasn’t dealing with depression…I was dealing with lupus!  I remember dealing with headaches, a rash all over my face, fatigue, and memory loss. Can someone explain to me how this is depression? They would say to me that there was nothing wrong with me.  They also said it was all in my head.  Really?  REALLY?????

I finally found a doctor who was willing to do some extra bloodwork.  What did he find?  You guessed it…Lupus!  He sent me to a very good rheumatologist that confirmed the diagnoses along with fibromyalgia.  What a bittersweet moment.  Finally, an answer to all my strange symptoms I dealt with on a daily basis.  However, the realization that this was something I would be dealing with for the rest of my life was very disheartening.  L The strangest thing that happened was I was not able to realize I was in constant pain until they mentioned it.  I still don’t comprehend this, but I KNOW that the daily pain is VERY real! I’ve read that this happens to lots of people…strange.

The rheumatologist prescribed a medication that would help with many of my symptoms.  He told me it would easily take 2-3 months before the meds would work.  Well, three months later I was pregnant and all the medications stopped.  I was so miserable during that pregnancy.  I couldn’t wait for it to be over.  My OB had told me that because of the lupus I would be followed very closely, specialists would be involved every step of the way, and they would most definitely be inducing at 37 weeks for the safety of the baby. I honestly didn’t know what he was talking about.  The misery of the pregnancy did not allow me to think clearly.  I just went to my appointments and counted the days.

No one told me the dangers of lupus and pregnancy.  No one told me the huge possibility of stillbirth.  The only warning they gave me was that the baby could very possibly have a heart issue.  So they monitored his heart very closely.  I went to my 37 week appointment with bags in hand and my hubby at my side because we totally anticipated being induced.  The other OB in the office said she didn’t have a clue what I was talking about and they would not be inducing that day.   This happened every week for the next three weeks.  I was beyond depressed.  At almost 41 weeks I went into labor naturally, but it was too late…the baby died.

Not one doctor told me this was probably because of the lupus.

Six weeks later I was pregnant again, and of course no meds for the lupus.  In fact, my rheumatologist moved away.  The pain was excruciating. There were many times my ten year old son had to lift my legs into the bed because I couldn’t physically do it. Abner helped me so much through that pregnancy. I remember crawling through the house because I couldn’t stand the pain to walk.  The many doctors that were following me through this pregnancy even prescribed narcotics for my pain.  I refused to take it because I wasn’t willing to take anything that may hurt this baby. This baby was born at 34 weeks.  He had some issues breathing but he lived.  J

When this baby was four months old I fell down a few steps and broke my ankle in three places.  It was such a simple fall it made no sense that my bones broke so easily.  I was just told by my new rheumatologist that it was because of the lupus.

     

I was so busy during this time that I didn’t take the time to take care of myself.  I didn’t eat right, I didn’t look for a new rheumatologist, and I didn’t even think about my symptoms.  I had way too many other things to deal with.  Before I knew it I was pregnant again.  This pregnancy wasn’t as bad, in fact, my bloodwork showed that the lupus was in remission.  This is what happens in most lupus cases.  It had just never happened with me before this.  That is not to say this pregnancy was easy.  I was still dealing with fibromyalgia pain as well as gestational diabetes.  I had switched OB’s for this little one and they insisted I be monitored closely as well as be induced by 37 weeks. This baby was born and had some issues with her lungs but didn’t need to go to the NICU. 

After she was born I tried everything I could think of to lose weight.  Nothing worked.  It didn’t make any sense.  In fact, I was gaining weight even though I was eating right and exercising. The weight just piled on and the pain magnified. 

I finally listened to a friend’s advice and went to see a holistic nurse.  She explained that I was dealing with a very severe case of candida.  Before going to see this nurse I remember telling my husband I felt like I was dying.  I was quite sure I was going to have a heart attack or a stroke. The nurse explained that the candida was so bad that I could very easily have a heart attack or stroke.  She told me I could no longer babysit and I needed to find someone to take care of my little ones for at least two weeks while she tried to get this yeast overgrowth under control.  She was amazing and things started to look up.  The problem was I couldn’t afford all of the supplements she suggested.  So another friend told me about a natural doctor she was following on YouTube.  I figured it wouldn’t hurt.  So I started listening to his advice.  His suggestion was to eat only fruit.  This sounded crazy but by this point I would have eaten dog poo if it meant I would feel normal again.

 

The fruit worked!  I had NEVER felt so good in my life.  I lost fifty pounds without even trying. I was always full because I could eat as much fruit as I wanted.  Then I found out I was pregnant.  The fatigue came back with a vengeance.  Even worse than the fatigue was the morning sickness.  I was a mess. I was sick 24/7.  Not just nauseous but SICK!  I had no idea one could be this sick ALL the time.  After a couple months of barely being able to leave my bed I decided to contact the holistic nurse again. After listening to a friend tell me I REALLY should!  Of course, she had the answer.  She put me on some supplements and within 48 hours the sickness was tolerable. 

The fatigue and pain only worsened.  I was literally sleeping 20 hours a day. Try doing that with four kids.  J  I again saw a new OB because the last one had moved.  This OB was a God send.  He totally put me at ease and actually listened to me.  He has called me at home just to check and see how I was feeling as well as personally giving me my test results.  Knowing your doctor cares means so much!  A couple of months ago he asked if I would be willing to see a rheumatologist.  I told him I would rather not.  He was so kind about it though that I agreed to see the rheumatologist.  Boy, am I thankful I did.

 

Two weeks ago I went to see her.  She was amazing!  She spent over two hours explaining the effects of lupus on my body.  In my head I thought I was feeling better.  I didn’t want to admit I felt like crap again.  She started listing off symptoms…probably close to 15…I had 10 of them.  She also explained that since I was not taking any meds for the lupus that it was amazing that I was still alive in my 40’s.  Most women who deal with lupus and don’t medicate generally die by the age of 40.  Lupus causes your body to attack itself.  It likes to attack organs.  Apparently it likes to attack my heart, which would now explain all my chest pain and fatigue.  I’m not one for taking prescriptions at all!!!!!  However, I really felt that this time I needed to rethink that choice.  One of the reasons I decided to take the medication is because many pregnant women who have lupus have stillbirths.  I CANNOT go through that again. 

I have not been writing on my blog because I didn’t have the mental capacity to write.  In fact, I couldn’t even read.  Well, I could read but I couldn’t understand what I was reading.  This is very difficult for someone who used to read a book a day.  Since being on this medication I actually read and finished a book.    This thrills my heart.  I  READ A BOOK PEOPLE!!!!!!!  I have no clue if what I wrote today makes any sense but I wrote it nonetheless.  This makes me smile. J 

I hope and pray I will be able to continue with reading and writing.  It makes me feel soooooooooooo good!  Thank you Lord for bringing the right people into my life at the right time!