For your bad days…

I am having bad day. The combination of new medicine, diet changes, and everyday issues have left me feeling fatigued, helpless, hopeless, useless, and pathetically unhealthy.

On days like today, it is so easy to become stuck in these feelings. However, look around.

When I look around I see a peaceful bedroom I have set up with days like today in mind. All white and teal everything. Candles and flowers gracing any empty spot and pictures of my family and loved ones surround me. I see the sunshine coming in from my whiten linen draped windows. I see fluffy pillows and irreplaceable stuffed animals my Granny made years ago, before she died. I see books and Bibles. I see my own artwork that I made myself to lift my spirits. I see lights and garland so my room looks like a fairy wonderland. All around me I see hope and love. So why should I let today stand in the way of all the love I have tried so hard to surround myself with.

What do you see when you look around? You may not see a twinkling fairy wonderland like I do (because, let’s be honest, that is not for everyone..) but I am sure you see a few of these common things. Do you see books? You are educated and care about yourself enough to indulge yourself in your own education. Do you see a bed? You are luckier than the estimated 100 million homeless people in the world right now. Do you see pictures of yourself and family? You have people in your life, who although you may not always get along with, they care. Do you see a refrigerator with some food? Granted it may not be stocked full of healthy fruits and vegetables, you are lucky to even have what mystery foods are in there. Do you see a tv? Poverty has stricken America in overwhelming ways, but you are doing well enough to own a tv! Do you have lights on? Many Americans do not.

Whether or not you have everything I listed above, I promise you if you sit and look around you can find things to be thankful for and those things will give you HOPE. Get up, smile, take a shower, tomorrow will bring new blessings. God bless you, my friends. It gets better.

 

 

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What to do on flare up days?

If you, like me, suffer from a chronic illness you are bound to have a flare up day eventually. These are days when your symptoms flare up and you feel limited to your bed. In many cases, you really can not do much because your body is busy fighting off whatever is going on and this can make you feel like you have ran a marathon when in actuality you have been in bed all day. These days can seem dark, depressing, and endless. For many of us we sit in a dark room, in bed, and watch tv or sleep all day. While that may be okay to do sometimes, eventually that will lead you to a dark place of hopelessness. So I have put together some ideas to make flare up days not so bad.

  1. You have a chronic illness. Your body is fighting off this illness constantly and that will take a tole on your already tired body. Do not push yourself or feel lazy. Take the time you need to rejuvenate and come back strong and ready to kick more chronic illness butt! It’s okay to take time for yourself.
  2. Open the curtains and let the sunshine in. You can still lay down and rest, but letting the sunshine even for a little while will lift your spirits. I promise.
  3. Read your Bible. Even just a chapter can fill you with hope and grace! He almost always leads me to a verse that I needed to hear at that specific time.
  4. Make a to do list. This is something that helps me a lot! I am one of those people who give myself a hard time about laying in bed all day so by giving myself a simple and realistic to do list and accomplishing it, I feel like the day was not totally a waste. So for me this to do list will be as simple as, clean off the nightstands, sepera the laundry, and paint. Simple, but also productive while letting my body rejuvenate itself.
  5. Write! This is also a big one guys! I believe when you are writing to inspire others, you inspire yourself the most! Start a blog, write in a journal, something. Let your creative juices flow. I believe that more people with chronic illness need to spread the word!
  6. Get a pet. This is a big step I know so only follow through with this one if you are going to consistently take care of this animal! Having a pet has been a lifesaver for me and I mean that literally. I have a yorkie named Sophie who has been my best friend for eight years now. When you have a pet you truly connect with, it is a blessing from God! Sophie knows everything I swear. If i am in a good mood, she is running around and playful. If I am having a bad day, she will come over and lay in my lap. If I am having a flare up day, she wants to be lazy and cuddle all day. Having a pet can give you a sense that someone needs you and responsibility which can help you on those days when you feel sick and useless. Many people with chronic illness can have service dogs which are very necessary for some.
  7. Join a support group for your illness. This has help me a lot not only through flare up days, but also finding more information. Behcet’s disease is very rare so many doctors have never heard of it. No doubt, other patients have taught me more than doctors have. These people know your pain and they know the demons that come with flare up days, talk to them!
  8. Invite friends over for an hour or so. Having someone to talk to is important! Do not isolate yourself. This will also give you something to look forward to during the day.
  9. Light candles. It sounds crazy, but cables or wax warmers (anything that puts off a scent really) has helped me. It is something I enjoy and it lifts my spirit when I am feeling uninspired.
  10. Take up a small hobby to do during these days. Coloring, painting, jewelry making, writing to a pin pal, something, anything! Turn these days into something positive!

 

Behçet’s Flare Up 

Today I had a follow up doctor’s appointment with the dermatologist since the biopsy. During the previous appointment she prescribed prednisone to calm down the current flare up I was having. I took it for three weeks and then the week after I had a follow up appointment to see how the medicine worked. While taking prednisone, I was super energetic and cranky. I got a lot done though. Yesterday I had another flare up and this time it came back with a vengeance. I have rashes on my chest, face, back, arms, and legs. I have oral and genital ulcers again and my body feels like I’ve been hit by a truck. This is what Behçet’s looks like. I could only include the few pictures that were G rated, but you can still see the impact this disease has on me. So I went home today with some big decisions to make regarding my treatment. I can take a medicine called Dapzone everyday that has big side effects like anemia or I can try vitamin infusions which don’t have a huge history of successful treatment, and long term treatment can result in hair loss. Decisions, decisions…

Today I was diagnosed..

Over a year ago, I began to notice strange symptoms. I started questioning my own health. I had several doctor’s appointments, but my symptoms were so broad no one seemed to be able to put the pieces together. I have been told everything from herpes to fibromyalgia, and everything in between all with negative test results. I decided I would stay persistent and do my own research. After months of looking into each mysterious symptom, I came across Behcet’s Disease. As soon as I saw those words, I just knew that is what I had. I told nurses and doctors, and all of them told me that disease was much too rare. To fully understand how tiring this process was I ask that you read Health Update and Biopsy Day, located under My Health Journey category.

A week ago, I visited the dermatologist to get a biopsy of an oral ulcer. This test would give me the answers and reassurance I had been looking for. Today I got the call saying that the test showed positive for Behcet’s Disease. At first, I felt happy that throughout this process I did not let anyone discourage me or change my thoughts on my own illness. I was also very happy that the tests can stop now. As time goes on, it is starting to hit me that I was just diagnosed with a chronic illness. An illness that for the rest of my life will pop up when I least expect it. Behcet’s is a very rare disease. According to the American Behcet’s Disease Association, it is estimated that 3-5 / 100,000 people have Behcet’s Disease in the United States. However, I am not upset. I understand that God gives us all certain struggles and there must be a reason he gave me this one.

I hope this inspires people not only to listen to their heart, but also to never give up. Trust me, if I can get through the tough situations that have came my way in the past year, you can get through the hardships you are facing right now too. Remember, God has a bigger plan for us than what we can even dream of so these trials are just to shape you into the person He created you to be.

“Always be joyful and never stop praying. Whatever happens, keep thanking God because of Jesus Christ. This is what God wants you to do.” 1 Thessalonians 5:16-18