Archives For Worry

Lupus. It’s a word we all know but a disease most know so little about. I was once a part of the crowd that knew nothing about this invisible illness, and then I found  out I had it! There is no simple way of getting diagnosed. In fact this was a four-year process and I didn’t even realize it! When you keep getting misdiagnosed but have faith that the doctors treating you are accurate then it doesn’t really cross your mind that something much more could be going on. It all started one night, four years ago when I awoke in a panic. My heart was racing, my chest felt so tight and painful that I could hardly breath. I could have sworn I was having a heart attack! I can still remember how scared I was, I’ve never felt that kind of fear before. We went to the ER only to be told that my cartilage in my chest was inflamed. They chalked it up to exercising. I was told to simply take some ibuprofen and I would get along just fine.

feetAround this same time I also had a rash on my torso. I went to several different doctors, all of which gave me a different answer, different medicine and nothing proved to work. I was beginning to feel like I was just imagining things. But, I didn’t really know what else to do other than maybe find a doctor that could not only give me answers, but that I could trust.

During all this time my chest pain would return for days or weeks at a time. Eventually I got to the point where I felt like I couldn’t breath so I went to our new family doctor and he started me out on an inhaler to see how it worked and brought me in for follow-up appointments. I was so appreciative of a doctor that cared for his patients and followed up with them. I wasn’t on the inhaler very long and wasn’t fully convinced that it worked. Then I got pregnant and my symptoms improved, which can happen with Lupus patience.

A few months after having my son my symptoms began to come back along with a new one that I had never seen before. Every time I got cold my fingers would turn stark white and stay that way for a very long time. They would then go painfully numb as the blood worked its way back in. This was a pretty scary thing to see. At first I thought it was just poor circulation but I really felt like something wasn’t exactly right. So, I went in to see my family doctor and showed him a picture on my phone of what my fingers were doing. He immediately called for blood work.

Within a week I had my results back where I was told that they were referring me to a rheumatologist. Everything finally came together at that first appointment. The past four years of chest pains was Lupus, the rash was Lupus, the painful shortness of breath was Lupus, my fingers turning white was Lupus. I didn’t even realize during all this time that I was being misdiagnosed, thankfully I found a doctor that called for the blood work.

This is a problem for so many with Lupus because it’s symptoms mimic that of so many other diseases. No one blood test can diagnose it either. It takes blood work, examining your symptoms and your history. Because of these reasons it can take years before a person is diagnosed, for me it took four years and I didn’t even know it!

So much changed after I received my diagnosis. I am learning my illness and hoping to not only spread awareness so others will not go misdiagnosed, but to spread a little hope and inspiration to others in similar circumstance, because Lupus does not define me!

If you would like to join my team and walk a mile in the annual Lupus Walk or donate to the cause, you can do so by following this link.

Thank you for helping me in my fight with Lupus!

The Four Year Confusion

December 15, 2012 — Leave a comment

Did you know that Lupus gets misdiagnosed so often because the symptoms are so wide-spread and they resemble many other illnesses? This reason alone is why it can take so long to get a true diagnosis with someone who has Lupus. After getting my diagnosis I now realize that so many of  the problems that I had were due to my Lupus yet I was not being diagnosed properly. The first instance that comes to mind was just after graduating college. Chase went to a movie one night and I went to bed early. I woke up in a panic in the middle of the night with severe chest pain, I could hardly breathe, my chest felt like it was being crushed. I could have sworn I was having a heart attack, I was only 22 was that even possible? With me being a worrier I kept feeling like it was getting worse I turned on the TV and tried to get my mind off of the pain in my chest and hopefully distract myself until Chase got home. This went on for days. Finally I went to the E.R. one afternoon and after several tests they managed to come back to me with a diagnosis of inflammation. Take ibuprofen and see a family physician was all they would say. Leaving the hospital I was less than satisfied and I didn’t believe that they had done everything to insure that was really what was happening.

This was four years ago! The past few years I had to take ibuprofen, which never helped, and just continue to wonder what was going on. It is so frustrating knowing that something doesn’t feel right yet you can’t seem to find anyone who will listen or even a way to describe just what you are feeling! I started to get to the point where I felt like this was just normal, maybe my chest is supposed to hurt all the time and maybe it is supposed to feel like someone is pushing on my lungs and keeping me from breathing easily. I got to the point of believing that this was so normal that even after we found an incredible family physician I didn’t even say anything to him at first. I mean why should I, after all I was fine! Eventually the pain worsened and the increase in feeling like I couldn’t breathe continued, so I made the appointment. I had such a hard time even describing what I was feeling like because I had become so accustomed to it. The first thought was asthma since I went in mostly talking about the breathing part of my problem and so I tried inhalers for a while. Then after going in later down the road with my fingers turning white he issued a blood test which then brought me to the specialist.

In my first appointment at the Rheumatologist office we talked about my health history and when it was brought up about my chest pain he asked the question that I had asked myself for four years, “but why is there inflammation in your chest?” Of course now we know it is due to my Lupus. It was such a relief to have a family doctor who saw the need for a blood test and a specialist who was able to finally give me my answers. It is never easy to know that something isn’t right yet you have no answers. There have been times that I look at how “quickly” I was diagnosed once I went in April, but only now do I realize that my journey actually began four years ago.

 

Photo Credit: Demi-Brooke

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“You are my strength, I watch for you; you, God, are my fortress,” Psalm 59:9 (NIV) 

This week I have been exhausted. No amount of going to bed early will help and coffee won’t do the trick. Sometimes this is just life with lupus. I have only known about my having this disease since May but the process of finding out what was going on with me began back in January. I started to notice that my fingers would turn bright white and go numb when I was cold. When I am saying white I mean stark white and it would take a solid 10 to 15 minutes before my fingers would turn back to normal. It was really alarming and I wasn’t sure what was wrong so I took a picture of them and posted it to Instagram and then I took that picture and showed it to my family doctor. At that point we began the process that lead me to my diagnosis. So many things that I have struggled with began to make sense as they were signs of my lupus yet I was unaware and by themselves they seemed harmless enough to not got to the doctor. But even then there were things that I had gone to the doctor for and it was missed, like several years back I went to the ER for chest pain and it was said that I had inflamed cartilage causing the pain but in fact it was my lupus. My symptoms were wide-spread at first so they were not being noticed and lupus is a disease that has times where it is active, flare ups, and times of remission so it wasn’t until this May that I learned what was truly going on with me.

No one wants to hear that they have a disease that they will have to deal with for the rest of their life. It stinks! But at the same time I can’t focus on that! I may not know the reason behind all this, but it is the road that has been set before me. During the long months of waiting I had no idea what was going to be determined and I had my moments of worry, but I truly believe that God gave me the strength to not focus on all the “what ifs” that were so easily there. I felt his presence during this entire process. He has a plan for us all, we may not understand that plan and guess what… that’s okay because it’s in His hands.

Every day looks different. There are good days and bad. And sometimes I have to remind myself that it’s okay to have a bad day.

Every flare up looks different.

Today, and this week I have struggled with fatigue, but tomorrow is a new day.

He says, “Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.” Psalm 46:10 (NIV)

At church now we are going through a series that is inspired by the book Soul Detox by our pastor Craig Groeschel. The sermon last week was about a restless soul. Now if your like me I wasn’t completely sure what that would mean and I definitely didn’t feel like it would be something that I would need to worry with. But, Sunday was just another one of those days where you are sitting listening to the sermon and you feel like God is speaking directly to you, and rather loudly in fact.

There are so many things that I worry and stress about. I pray and ask God to take control and I believe that I have done what I was supposed to do because I have “given it to Him.” But, then I realized that I might have prayed about it, but then it’s still on my mind through out the day. The point that really spoke to me was when my pastor said that we can’t truly focus because our mind is elsewhere, worrying, stressing or just thinking about that to-do list. Wow did that make everything clear to me. Just because I pray and ask God to take control doesn’t give me the freedom to still sit and stress and worry. I have to be able to pray about things and leave them with God and not try to carry them back with me.

He challenged us to sit for five minutes a day and think about nothing but God. Here’s a hint, if you don’t think you have a restless soul just try the five-minute challenge… you’ll be surprised at how many things you think about other than God… like doing the dishes, cleaning the house, cooking, finances or anything else that is stressing you or just on your plate. I have done this challenge everyday since last week and some days are harder than others, but I have noticed a major difference in my focus, my attitude and just my day. We have to be able to turn off our spinning wheels in our heads and focus it on the things that matter… the dishes will be there later, it’s all okay!

Photo Credit: Cristiano Betta

The song I picked for today is an older one, Turn Your Eyes Upon Jesus. This clip that I found is of Hillsong singing the chorus, the crowd joins in and it is just beautiful! I love this song, I remember singing many other hymns growing up at church and sometimes its just wonderful hearing those old hymns again. The video only has the chorus but I have posted all the lyrics below. Nothing is too much for our God, just listen to the chorus!

Turn Your Eyes Upon Jesus

O soul are you weary and troubled?
No light in the darkness you see?
There’s light for a look at the Saviour,
And life more abundant and free.

Refrain
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His Glory and Grace.

Through death into life everlasting
He passed, and we follow Him there;
Over us sin no more hath dominion –
For more than conquerors we are!

Refrain
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His Glory and Grace.

His Word shall not fail you – He promised;
Believe Him, and all will be well;
Then go to a world that is dying,
His perfect salvation to tell.

Refrain
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His Glory and Grace.