Another Day Another Rash

Hello my name is Misty. I am a 40 yr. old woman and I Have SLE /DiscoidLupus and it really,really sucks. 

Just when I start feeling better the world hits me head on and hard and once again I am down.

I can handle the hellish pain I feel every day 
(to a point )  then all I want to do is cry. But I can't   because  it takes all of my energy.
 Just like showering,walking, moving  
 getting dressed, breathing , cleaning etc. 
 You get the Idea.
I am tired of being tired, exhausted and fatigued and sick all the time .

All of which is different things in different ways.

 I hate that this disease has taken over my life and I am controlled by it.  
I am on an emotional roller coaster every  day.
 I am so mad that I can't do normal things anymore without paying the price days later or the fact that 
  pretty much anything has been a task without being tired or having to rest after.
For instance  
I had to go to the store yesterday and it took me 4 hrs. . 4 hrs for 5 items .Seriously ....

 Here is the break down .

 1hr- To pull myself together and cover this horrible rash with makeup.
another hour - for getting dressed because buttons, zippers are the devil and I refuse to wear pajamas.

2 hours - for the store itself -I went and picked up 5 items and the walk alone down the isles made my legs crumble and I was so weak. I had to take breaks just to catch my breath.  
seriously .... I am only 40.. 
By the time I got to my car I was exhausted physically and emotionally.
To take the groceries inside my house broke me. 
I almost dropped all of my bags because I was so weak. Glad my daughter was with me  to catch them. After this ordeal  I had to lay down  and I hated every moment of it and cried silently into my pillow until i fell asleep. 

How do you not get depressed ?
 It's easy when you can't do the things you use too.

What do you do to be happy?
When the pain is so intense it takes away everything you use to do especially my  hobbies  

How do you live your life?

Because I sure in the heck want to know. 

 That is the question I ask myself daily.

Enough of my venting 
 let's get to the point of today's blog 

I have been asked to share my story of  My Lupus Diagnoses.
 How I started into makeup?
                                 And some random questions 
     So I am giving the people what they want .


 Here goes- 

My Lupus Story 
  2010-

I was working at a Middle Eastern Spa after I graduated with my License in Master Aesthetics .
I loved doing the  different treatments, pedicures/manicures , Facials and makeup .
 I was doing all these  treatments because I was the only M.A. in the spa so  I was very busy and very active.

One day at the spa my fingers started tingling and I felt dizzy when I stood up. I couldn't walk normal and this was very scary for me. I barely  finished my Client's pedicure and  I went home for the day.
 I told my husband  that I wasn't feeling well and had to lay down . I was so nauseous, had a fever but didn't feel sick .
I just knew something was wrong.
 I thought maybe I was having a Stroke or Heart Attack .
 Each day got harder and harder for me 
Still not feeling well I pushed on  I would ride the Trax train to work and walk the rest of the way (about a 5 min walk was all .) Not so hard right? Wrong The sun was horrible to me  it was a hot summer and every second I was in it made me sick. 
 I felt like I had Heatstroke all the time.  
But  that is how I justified my being sick it's just heatstroke.
 I started to have pain in my body that would make me stop what i was doing and I would have to catch my breath.
(Mind you I have had 5 kids and this pain was worse than labor. )
Is that possible? LOL
 I just ignored the pain and did what i needed to get through my day.
But it was getting worse by the days .

 I couldn't paint nails without shaking or my hands cramping up on me. I could barely stand doing my treatments and the pain I felt was enough to send anyone to the E.R and that is where I ended up.

1st-Diagnoses
 I was just overworking myself and getting sick.

 This continued on and I just figured it was from previous medical problems Gall bladder,hysterectomy,c-sections etc . 

Finally after a month  I went  and saw my Dr. and again 
2nd Diagnoses- I was sick and had to take it easy gave me some meds and that was that .

 I knew something more was happening because  Everything was getting worse. 

Sadly I knew that it wasn't going to get any better. So I shut it out of my mind.   
I am a mother and need to work to support my family 
I was  making  any excuse for the symptoms I felt. 
 Well  things got worse and I kept getting sick and wasn't getting any better. 
 I would be sick for 2 weeks at times not being able to do anything but sleep,cry and just feel crappy.
 I was exhausted all the time to the point of falling asleep on my family.  My fingers continued to spasm and close up and I couldn't move them. 
I had to wear gloves just to keep them warm so they wouldn't hurt. The extreme pain I felt in my fingers and feet felt like pins and needles pricking me, if I touched something my hands hurt enough that  I would cry. 
They stayed white most of  the time and  it looked horrible they were so sore and hurt so bad they started to crack ,my nails would  break and almost fall apart as you can see, so I saw a dermatologist and they said I was having a reaction to something. 

 I was getting sicker and sicker the stomach pain I felt was too much and so I would have to stay home and sleep just to make it through the day. 

I was asked 
Could  I be pregnant ?
 That wasn't a option for me.
I had a emergency  Hysterectomy total  months  after my  last son  due to a double Uterus and hemorrhaging.
 It couldn't be my Gall Bladder because that was removed after my Second child. 
Still I knew something wasn't right. After months of coping with  this struggle of  feeling like I had the flu everyday , being exhausted to the point of falling asleep for days .
I knew I couldn't do what I loved anymore and I had to face the fact that It was time to quit. 
To be honest  no one is going to want their nails painted by someone who couldn't even paint their own.  Let alone look like they had been through a blender.  Right?
 Body treatments were not something I could do because it drained me of all energy and i could barely stand up.
 So I gave it all up and stayed home 

 I started to feel a lil better to a point where i could move more without falling on my face and functioning somewhat normal.
 I wasn't as active and did things slowly.
 I  was going crazy at home so I got a job at the Daycare my kids attended as a Bus Driver/ Pre-K teacher . I loved it.....
I would run around and play with the kids all day then go home exhausted and drained of energy .
 I figured it was just because I was so active. 

I knew deep down that it wasn't and something was wrong. The pain and sickness came and went still and i locked it away and decided to not tell anyone .

 Talking to my mom one day  she told me that she was diagnosed with Sjogrens   
Crap! The symptoms my mom would tell me she was having  shocked me because I was having them too.  I chose to keep it quiet. 
I told myself I don't have Lupus I am too young  as I kept getting sicker. 
I knew  My sister was diagnosed with Helicobacter  and they thought she had Lupus as well.

 My husband was determined for me to be seen by my PCP  about everything and I refused to go.
 I justified my getting sick to working at a day care. (kids are always sick ) the other was i was just active and working hard.

  I  ignored the mild rash I would get because it would come and go. When i was younger I had the same thing. So  I thought nothing of it  unless It was too bad then I would cover it with makeup so know one could see it NOT even my Husband .

Let's talk about the Sun-
It's Never been my friend 
 When I was out in the sun for more than 15 Min's I would hurt , my stomach was so upset and I was nauseous. I felt like I was being burned alive on my body.

 I am a avid sunscreen wearer both body and Face .

 I always wore a Jacket or Sweater in the middle of summer .   

I just thought I had heatstroke and was dehydrated Many trips to the E.R  would take place But I would  be sick for days after . What Gives?
I have always avoided the sun when i can  because I would get sick and Fry like a Lobster .  So summer was spent inside for me . 

The Fatigue-

 The exhaustion and fatigue I felt was something I have fought my whole life. 
Which makes sense now .
 I went and saw my Dr for a refill on my estrogen Medication  and told him about how I was always  tired.  
Dr's Diagnoses-

Depression / hormone Imbalance/Thyroid 
I was just exhausted because I was so active. 
I  had a sensitive stomach because I no longer had a Gall Bladder
Maybe I worked out to hard that day ,etc..
I was given medication to balance out my hormones and my thyroid . That didn't help
It got to the point that I knew I had to do something more.

 I was almost  falling asleep while driving the day care bus. Managing my Pre-K class was getting harder to handle  it drained all my energy.
When I went home on breaks I would crash hard 
it was all my body could do and it was happening a lot more I would walk to work because  my job was 10 mins away and  it took me 15 mins and  that time in the sun would make me so sick . 
I would come home and manage my family 5 Kids of homework, chores, baths etc.
 Let's just say when I went to bed I fell hard and nothing could wake me up.. Except the pain I felt in my fingers, legs ect. 
I kept it quiet and to myself.

 To be honest with myself I was sick all the time, if I got a sinus cold it would turn into a full blown bronchitis or the flu or pneumonia and I was down for weeks and weeks. 

2013-
Finally  at one of my Dr. visits I broke down crying  and told my new PCP of all my  symptoms, showed him photos that i had taken of my rash, fingers etc.  How I was feeling in general and finally what my mom and sister were diagnosed with .
 My history with my mom and sister plus everything i had told him, my rash , the horrible pain  I felt, 
 The Sores I would get in my mouth that my other Dr said   were just bad canker sores due to dental Hygiene of  loosing teeth which was due to me I taking Estrogen  the times  my Mobile function was degenerating so badly  I couldn't hold a fork or walk for that long,  hard time breathing ,Fatigue and exhaustion,etc.
Made him start  testing to see if I  had Lupus (although my Dr. already knew and honestly I did too.)

With Repeated blood test ,  symptoms related to Lupus ,  ANA positive on every blood test and some other factors within my DNA ,different markers Urine and inflammation in joints etc. 
 My PCP  diagnosed me  with  Lupus. 
 I was put on Meloxicam and Plaquenil and Prednisone and Nifedipine for Raynauds Syndrome. 

Slowly things started to get a little better the medicine was helping but  I was still in pain and  ibuprofen wasn't helping .  I would go to work and push through the pain until I couldn't anymore.

 I couldn't keep up and I knew that I had to to quit the daycare and find a job that had benefits and not as active .
 Medical Benefits were a must now, I knew I was going to need them for the rest of my life 
At this time my husband was working a temp job and hadn't reached his permanent position where medical benefits were available . 
So it was up to me.
 I got a job at a call center and things were going  pretty good.
 I wasn't in the sun and wasn't as active like the daycare so Symptoms subsided a bit .
I was able to do my Job and have medical benefits too . Take that Lupus ..

 I was sitting in  a class one night when I stood up and almost fell on my face. I couldn't walk . 
I had to be rolled around in a chair How embarrassing. 

 It got so bad that I wasn't sure of standing up because I thought I would fall  I couldn't walk or hold anything without dropping it.  I couldn't type without my hands hurting .
I was getting sick a lot more and just wasn't getting any better. I felt like I had the flu every day and the pain was more than I could handle. I couldn't fall asleep the pain was too much to handle 
 I would rock myself to sleep if I could and cry out in my sleep. 
 I went and saw my Dr. and he prescribed pain medication . Tramadol was a life saver for me it didn't take the pain away completely but it did take the edge off a bit so I could function . 
  I  was taking Prednisone but that was to much for me it was making me  sicker . 
I wasn't eating a whole lot because of the sores in my mouth . 
I would see my Dr. once a month and i was gaining weight too fast so we stopped that medication and I started taking Flexeril for muscle spasms.   

Things just got a little bit easier but then the Flares hit and I wouldn't be able to function and to walk i had to use a walker, my rash was bad and myself esteem was shot, symptoms lasted days and all i could do was sleep .. The sun made me so sick I was fighting it at every step .

I had to face the facts that I was sick and I was never getting better and this was a lifetime disease.
 I cut back my hours but fought to keep my benefits and make it to work without sleeping through the day .
 I was beyond Stressed so my husband and I started doing more research on Lupus, foods etc . 

Changing my diet and not eating certain foods helped my stomach pains. I cut out all nightshade vegtables, potatoes , all meats except chicken and I started feeling a lot better.

2014
- The right medication prescribed really started to help me for the most part .  
Since there isn’t a pill I can take or even a cure for this disease.

 The medications I take are Meloxicam, Plaquenil, Tramadol , Flexeril and Nifedipine for Raynauds Syndrome 

Present -
I have gotten use to my medication and can handle the days that are good .

 Does that mean I feel better  because I am dressed and my makeup is done? 

No, it just means I have learned to manage the pain and put on a brave face even though my body is trying to kill me from the inside.

My husband has encouraged me to focus on the things I can do and take it day by day.  It's easy to fall into depression when you can't function normally
 (This is easier said than done. But I am trying...  )

   Yesterday the only thing I could really do was cover my rash  with makeup .

I feel better when it's covered it's less depressing for me to look at and know I can't do anything to prevent It.
Especially being a Master Aesthetician .. Where my knowledge is in Hair , skin and Nails It drives me crazy  but as my husband says it just makes me have more character.

What made me love Makeup? 
I was never the girl who was into makeup honestly.
I would wear just the basics mascara and a little bit of blush and that was all.
 I was even that girl who did not put any color on her fingernails . 
I didn't get into it until I went to school for Master Aesthetics and then I just fell in love . I graduated with my Makeup Artist Certification.  Since then I have wanted to learn everything I could about makeup and glad I did Because now It has become a priority to cover my rash.
 Still there are days it's too much work  and I just choose to stay inside . 
 The hard and frustrating part is  I never know what it will look like it varies sometimes it's minimal and then there's days where it is Horrible like this It was very dark and patchy 
 I was completely sore and every time I moved my face it hurt . 

I was so exhausted that all I could do was Sleep and I slept for 3 days straight. I couldn't eat or drink anything I was so nauseous and it felt like the flu had hit me hard.

When you have this disease it tears your world apart.
 The emotional feelings are enough to make you think horrible things so you definitely need a good support system and I am blessed in this dept.

Life as you know it is different now  You can't focus on what you can't do You  need to do what you can and focus on the positives. 

I have decided that I am going to find some new ways to make my days better. I don't know what I am doing yet but I have to figure it out. 
I am home now all day and sometimes that is hard for me but it's great for the days I need to rest .

The question I am constantly asked about

Why don't  I do makeup reviews and have  a YouTube channel?

Too be honest I would love to  do that esp for us Lupie Fighters but  I don't know if I could handle it, or  put the time into it like I need to . Right now  I just can't put the Money into it either 
My Medications are more important to me ..
And if I am being honest  have you seen  the You Tuber's ?

I don't think I am pretty enough who wants to watch someone with missing teeth and a rash on there face?  I know it's dumb to think this way because I would be great at It  but I am emotional enough as is. I couldn't handle the hate or the comments made about me.

  Plus with my blog I can post when I want and whatever I want. Who knows maybe down the road? A LONG LONG way down the road ....LOL

Wowza! That was a lot of typing and my hands hurt 
I hope that has answered your questions and my story can help you .
My advice is don't wait until it is bad get it managed now and fight for yourself .. Don't put it off like I did I could have probably had this all managed if I wouldn't have been so stubborn. That is the hardest part in my opinion .

I appreciate you taking the time to read my blog

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 On to the Fun Stuff--

I am so excited that my January Ipsy Glam bag is on its way I should have it this week it's taken longer for some reason??   Mine shipped out first but my           daughter got hers already...

Also there is so many new makeup products that are going to be coming out and have .
I am hoping to snag some of them to try and review if there is one you are interested in Let me know and I will see about getting it.

Shout out to my Kids and 

my husband who is working so hard so that I can stay home, I appreciate him and everything he has sacrificed for me and how he loves me unconditionally through this all..

Thanks again for taking the time to read  

Stay Strong and keep Fighting 

Gentle Hugs and Strength to continue the fight!

Love ya All,

Misty