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Month: August 2016

Obstacles with getting diagnosed with Lupus

Obstacles with getting diagnosed with Lupus

To say getting diagnosed with Lupus has been riddled with obstacles is an understatement. The truth is I still don’t have a definite diagnosis. I have partial possibilities that lead to more questions. It’s extremely frustrating to feel like your body is betraying you and there is no explanation.

I have very few for sure answers. One thing we know is my blood test show a positive ANA. When I went to see a Rheumatologist he ordered additional blood work. He wanted to rule out other diseases, make sure my ANA wasn’t a false positive, and attempt to get a clearer picture of my health. The process to gain any insight kept feeling like it was getting more and  more lengthy.

After a few weeks my second round of blood tests results were finally back. My ANA test was still positive but considered a weak positive. Even with a list of symptoms including a photosensitivity and a positive ANA I was NOT diagnosed (I am beyond frustrated by the point). Instead the Doctor decided he wanted to monitor my health with follow up appointments every 4-6 months. I, of course, was told I can come in any other time, if needed.

The worse part was leaving the office with no understanding of what was happening to me. I had no clue how to ease my pain and discomfort. I felt like I was left to deal with it all on my own.  My hope was (after continuous appointments) this would be the one I’d be able to start to comprehend and take action.  I naively thought I would know how to manage whatever was going on.

I actually left with more questions than I ever had before. Will this be my life? Is there nothing I could do? Why can’t the Doctor give me more answers? I began to wonder if I really was sick or if I was having the worse case of the placebo effect.

I went home confused and questioning everything. My husband and I were so upset. I tried to make sense of it, trying to figure out, on my own, what the heck was going on.

Looking back I see I was not being realistic. After reading a ton of articles and forums, I realized it’s rare to get easily diagnosed with an allusive disease like lupus. It’s often misdiagnosed or confused with other health issues.

The difficult part for me was wondering if I’d ever feel okay again. I wanted to be able to have energy and play with my kids. I needed to cook, clean, and spend time with my husband. I desired some normalcy and no longer wanted to be controlled by this. I was already unable to go in the sun due to my Photodermatosis (discussed in previous post) but other issues kept getting stronger and harder to ignore. A short list of symptoms include: anxiety, constant fatigue, swollen/ achy joints, nausea, lower back (kidney) pain, easy bruising, brain fog, dry mouth, frequent urination, headaches, hair falling out, among a list of other issues.

For awhile I believed I was just a sickly person. I had no clue these symptoms could be due to one disease. I couldn’t accurately describe to other people what was going on. They saw a healthy person on the outside unable to see the torment I was feeling within. The harder I tried to control it the worse I felt.

I got to the point where I believed I would never know what was happening. In many ways, I still feel I am in the same spot as I was before my first appointment. I started to think I made myself sick especially since my Doctor only wanted to monitor me. With no diagnosis I thought I must be healthy and I needed to stop creating issues.

Two weeks later I had a reality check and knew it wasn’t in my head. There was no longer anyway to deny that I was not in control of this. I woke up stiff and struggling to move, my fingers started to swell and it was painful to bend or move them, I could barely grip anything. My feet swelled making it painful to walk. My lips tingled and felt puffy. I was extremely tired and had major brain fog. This is the short list of everything I was feeling.

I decided it was time to take action and empower myself. I needed to seek as much information as I could. I had no choice but to get educated about autoimmune diseases. I could not go on being a shadow of myself. It wasn’t fair to me or my family.

I wanted to go to my next Doctor’s appointment armed with knowledge. I am not even close to having all the answers. I’m learning more everyday and have recently learned certain foods and ingredients are harmful for me. It’s alarming to see all the things that can affect me and the way I feel so easily. It’s been a lot of work but has paid off greatly already.

I hope in the coming months I get closer to knowing exactly what is causing all these health issues. When I go to the Rheumatologist again, I plan to have a list of my own research to inform him on what has helped and impacted me. I’m going to cross my fingers I get a clearer picture on what I can do to manage it all. Until then I will stay positive and keep going.

 

 

 

 

 

 

 

 

 

 

Photo Credit:

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How I learned I may have Lupus

How I learned I may have Lupus

As soon as I answered the phone, I immediately knew by the Doctor’s tone she was concerned. I was even more alarmed because it was not any of her office staff. As I said Hello, my initial thought was, why is my Doctor’s office calling? My next thought was, Oh wow, this is my actual Doctor, following with the immediate fear something was wrong. If I think back, she actually sounded nervous.

Let me rewind a little, I want to explain why I went to the Doctor in the first place. I finally decided to make an appointment because, to put it simply, my skin hates the sun. When I am exposed to the sun for longer than five minutes I have an intense reaction.

The first time it happened I was 5 months pregnant. I chaperoned my youngest son’s kindergarten field trip at the zoo. I assumed I was sunburned from being in the sun all day. I have to note before this point I never had a sunburn before. My skin was very red and inflamed with hive-like bumps, it felt like my skin was on fire. I’ve always had sensitive skin and thought something could have possibly irritated it and made it more susceptible to getting burned. I even wondered if it could’ve been due to my pregnancy. After I healed I honestly forgot all about it.

Moving forward to a year later (around the same time) I chaperoned another field trip. I had the same issues in the exact areas of my upper body. I, again, healed and did not think it was anything to worry about. However, the following year is when I became concerned and realized this was not a normal burn, if it was one at all.

I am one of those people that avoid going to the Doctor at all cost. Previous to this point I had only gone to a family practitioner to be diagnosed with TMJ. Other than my pregnancies and my TMJ appointments I have not stepped foot into a Doctor’s office for myself in my adult life. It was a big step for me to recognize this is something I needed a Doctor’s help with.

My eyes were actually what made me rethink what was happening to me. I noticed they were getting swollen and had hives on the bottom part of my eyes in the shape of a crescent. In my mind I couldn’t figure out what was going on. I thought it could be my face toner or moisturizer. Then, one day I came in from a walk with my daughter and felt my face burning. I had an AHA moment. My sunglasses were gradient which means they are dark on top and slowly fade to a lighter color toward the bottom.  The hives on my eyes were the exact shape of the gradient part of my lense.  That’s when it clicked! I began to wonder if it’s possible to be allergic to the sun!?

After a ton of research and looking at image after image I came to the conclusion I needed to see my Doctor.  I was sure I had a definite issue with the sun but wasn’t sure to what extent. I had no clue what I was about to stir up.

Once I went to the Doctor and discussed my symptoms I was diagnosed with photodermatosis which in short is a sensitivity to the sun. The Doctor casually asked if any of my family members had Lupus and added that it can be a cause for photosensitivity. She decided to order blood work due to other health concerns which included fatigue and anxiety.

The week after my blood work was completed I was called by my Doctor’s medical assistant and told everything came back normal.  I figured I needed to take care of myself better and relax some (when I’d manage that with three kids I wasn’t sure).  After we hung up I did not give it a second thought (because why would I) and went on with my week.  

Less than a week later I get a call…

Me: Hello

Dr: Hi, This is Dr. (says her name)

Me: (Rush of thoughts) Umm hi

Dr: I’m calling because I received more of your blood test results. I thought we had them      all when I had my assistant call last week.

Me: (nervously) ok… (I’m thinking: This is the Doctor not a staff member, is this something serious, oh my god)

Dr: Your ANA test came back positive and I’d like to refer you to a Rheumatologist.

Me: Was that the test for Lupus?

Dr: Yes, That can possibly be causing your photosensitivity. Lupus can be the culprit…

She went on, as did my mind thinking a million thoughts in that moment.

I am not too sure what I said next, I know I asked a few questions and thanked her for calling me personally. I, then, had a minor freak out not knowing what Lupus was exactly.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Photo Credit: http://www.relatably.com/q/img/expect-the-unexpected-quotes-tumblr/8e4f4df62e988441b580e701806b70b7.jpg

Focusing on what I love about me

Focusing on what I love about me

I have been so focused on what I need to improve about myself or my blog I haven’t mentioned the things I like about me. I firmly believe to really grow as a person you have to see the good in yourself. Self-discovery doesn’t mean you have to change all of you.  As much as I focus on my flaws I need to learn to celebrate my positive attributes.

I decided to sit down and discover what I really loved about myself. I made sure to focus on what distinguishes my individuality. There were at least four personality traits that I’m proud to possess. These characteristics are the foundation of who I am.

So, without any further hesitation here’s my four personality traits I am happy to have.

  1. I am a leader. I have never felt the need to follow the crowd (It seems like an oxymoron because I do fear judgement). I have been called bossy or controlling plenty of times. I’m okay with that, I get stuff done! It’s important for me to take pride in this trait because my daughter is very much like me. I never want her to feel ashamed of it like I once did.
  2. I am a listener. I am always there for my loved ones. They can count on me without a doubt. I will cry with them, laugh with them, talk it out with them and help them in any way I can.
  3. I am honest. It is actually very hard for me not to tell the truth even if it’s joking around. I may even be called overly honest or blunt. I would never just say something to be rude but if I am asked a question I give my honest perspective. I am not a good bull sh*tter.
  4. I am compassionate. I easily feel for others or I am understanding toward what they’re experiencing. Happy, mad, sad, I feel it too.

It’s refreshing to focus on some of the things I would never want to to change about myself. To sum me up I’m a good mix of a bossy, crazy, firecracker, as well as a silly and loving person.  

 

 

 

 

Photo Credit: http://www.quotesfrenzy.com/142110/life-inspiration-quotes-i-may-not-be-perfect-004/life-inspiration-quotes-i-may-not-be-perfect-004-2

Ten Quick Facts About Me

Ten Quick Facts About Me

The start of me revamping my blog is for me to stop being scared of getting personal. I want to shed some skin in this moment and rip off the figurative band-aid. So, here are ten facts to introduce myself.

  1. I have been married for 11 years, together for 15, and best friends for 17.
  2. I have three kids ranging from toddler to preteen. 2 boys and 1 girl. Our girl is the baby. (I’m sure I’ll be sharing interesting stories about our littles.)
  3. I’m an overly private person and I struggle to open up. Writing has always been my outlet. (two facts in one)
  4. I hate the sound of fingernails scratching on cloth. It freaks me out.
  5. I’ve had the same best friend since 7th grade.
  6. I met my husband when I was a sophomore in high school.
  7. My mom is one of my best friends.
  8. I am a very skirmish person. Anything to do with blood, guts, broken bones, surgery, and hospitals in general equal a no go for me.
  9. I am scared of heights and fear the ocean (we really don’t know what’s down there).
  10. I am obsessed with chocolate. I am particularly fond of dark chocolate. YUM!

There you have it. Ten quick facts about me! I have my corks like all of us do. I am actively working on not being so guarded. It comes so natural for me but I feel I am missing out on living because of it. I am making progress by sharing small facts about me. Nothing too significant but still very freeing. I am continuously working on conquering my goals to ultimately win against  my fears and restrictions I set on myself. I’m keeping it going!

Time to refocus my energy and stop being fearful

Time to refocus my energy and stop being fearful

It’s been awhile. I had to take a step back from writing to refocus my energy. I felt confused toward what I wanted my voice to be or what direction I wanted to go. There were so many doubts in my head. I over thought every post and obsessed about each word I wrote.

The questions were never ending… Am I writing to personal? Am I being too general? Should I write from my own perspective? Maybe advice is better? My insecurities won and I stopped myself. I became my own worst enemy. I really gave up, I decided it just wasn’t for me before I even started. My fears got the best of me and I walked away.

I’ve looked back on my post and truthfully I’m not impressed. They come off as a report rather than a voice of who I am. It could be anyone writing the post, there was no individuality.

I am a sarcastic, witty, anxious, caring, wife and mommy. I am fearful of judgment. Most of all I am blessed enough to realize I have the power to break through my own barrier I’ve created.

I made my passion no fun for me. I made it a job before anyone even read my anything on here. I was hesitant and over thought every single step (basically me in a nutshell).

So I took a figurative timeout. I had to get out of my head. I put so much pressure on myself to be an expert at something. I felt like I had to in order to have a voice. The honest truth is, I am just one woman living my life day by day the best way I know how. I am living, learning, and working toward thriving. I am striving to be the best mommy to my three kids and be a dedicated wife.

I have a good life with its fair share of lessons. I’m learning to not limit myself and see all the possibilities. My goal is to be more open and not prevent myself from soaring. It’s time for me to live without constant what if’s and I can’ts. Time to be fearless and confident.  I will continue to remind myself to stop  creating my own setbacks and push forward. More than anything I am excited to be more open and share my journey through navigating my life, my fears, enjoying my family experiences, and pushing toward my best.

 

 

Photo Credit: https://assets.entrepreneur.com/article/1415124114_quote-4.jpg