Dear Lupus

The Lupus foundation is doing a Campaign called Dear Lupus. Imagine you could sit down face to face with Lupus and have a conversation. What would you have to say? What would you want Lupus to know?

Here is how you can participate:

Get started. It’s simple.

  1. Create your Dear Lupus™ video. Share how lupus has impacted your life and how you persevere in the face of the everyday struggles and challenges of lupus.
  2. Upload Your Video: Upload your video to YouTube, or any other video platform. Include “Dear Lupus” in your video title and tag it with #DearLupus.
  3. Submit your video and share it with friends and family.

 

Be sure to visit Lupus Foundation of America Dear Lupus for more information and to read the Terms & Conditions to participate. If you do participate I would love to hear your story, and see your videos, please comment with links to your Dear Lupus videos! Even if you don’t plan on submitting for official participation, I’d love to know what you’d say to Lupus if you had the chance!

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May is Lupus Awareness Month!

May Lupus Awareness 2014 Month Flyer-page-001

 

May is Lupus Awareness Month! Here are a few ways you can raise awareness! I plan on doing my part to help.  Do you?  I will also be taking part in Put On Purple Day! Will you take part with me?

 

 

 

To The Newly Diagnosed Chronically Ill

Dear Newly Diagnosed:

I know it’s scary right now. I’ve been there. I don’t know the specifics of your situation, nor do you know those of mine. That’s not important right now. I want to share with you a few things I wish I had of had someone say to me at the beginning of my journey. I’m just a few months in, still at the beginning, but when I look back, I realize I’ve made strides from where I was, before I had answers.

You have a lot of information flying your way, and in a way it’s not enough. With each bit of overwhelming information, there’s a new question created in your head. It’s overwhelming. It’s terrifying. Doctor appointments will be overwhelming, write down your questions. Don’t be afraid to tell them you are overwhelmed, and scared. I cry in front of my doctors a lot. It let’s them know you are real, that this is affecting every part of you. That you aren’t just an illness. Also if you have skin rashes or the likes as part of your condition, take pictures and show them to your doctor, especially if they have the tendency to disappear before you make it to an appointment.

Find online support groups. Utilize Facebook, as odd as it sounds, there are an amazing amount of Chronic Illness support groups on there. It will help you to find others going through similar things. With that said, know that everyone’s journey with an illness is personal. Just because “Julie” is experience “scary symptom A” it does not mean YOU will. Also know sometimes people exaggerate online. You will learn quickly how to spot this type of behavior, if you are smart about it.

Breathe. You will forget to do this from time to time. I know I did. I still do.  Sometimes you have to take a few minutes and just relax. It seems to a common phenomenon across the board, 1. get sick, 2. develop anxiety issues.

Do not be afraid to ask for help dealing with anxiety/depression. If these become more than you can handle on your own, let your doctor know. There are plenty of options out there including medications, therapy, groups, etc. Do not suffer in silence. Please get help.

You will have a lot of different loved ones trying to tell you a thousand different things to ‘make you better’. They love you. They are trying to help. They mean well, but most of it will not make any sense because, they do not understand your condition. This will eventually get annoying. Learn to take it in stride, and love them back.

A harsh reality, you will lose ‘friends’. Some of the people who drift away from you will surprise you, and it will hurt. Some people can not deal with having a chronically ill person as a close friend. I hope you can be more graceful about this phenomenon than I was. I let myself get hurt more than I should-be. You will as a trade-off, learn who your true friends are, and you will strengthen those relationships and they will become even more awesome because of this.

People will say some really hurtful things without realizing it. They will be under the guise of being helpful or meaning well. They will come in the form of things like “I hope someday you can forget you are sick”, or “Maybe you should stop talking about being sick”. Realize you have every right to talk about your life and what is involved in it as much as you want to, just as they do. They talk about their crappy day at work, or their woes with divorce all the time and you listen, they should support you and be there for you when you need to talk about this part of your life too. The point I’m conveying here is, to us chronically ill folks, this is part of our everyday life, it should be okay for us to talk about it.

Friends and family members will go through stages of acceptance that you don’t expect. I still have a friend, who even after I’ve been officially diagnosed by my doctors, refuses to accept that I have Lupus. I guess she thinks I take the medicine for all the fun side effects.

Speaking of doctors, I have a few thoughts 1) You will see them a lot in the beginning, make sure you enjoy their company. I know that seems silly, but it can be the difference between being in complete misery every appointment or being near someone pleasant. I have 4 doctors, and I definitely have my preference as to who I prefer to see, based on personalities. 2) If a doctor is not a good fit, and you do not feel they are meeting your expectations, find a new doctor. It took me a couple of tries to find a Hematologist that was a good fit. I’ve been extremely lucky with my other doctors. 3) Also if you have one specialist, and need another specialist… don’t be afraid to ask for recommendations, my Ophthalmologist helped me find my Hematologist, and my Hematologist is the one who got me to my Rheumatologist.  I see a lot of -ologists

You are going to have good days, and bad days. Hold on, and try to stay focused on the good ones.

This is your journey, it’s your life, you will find your way, it may not seem like it now, but you will. There is no right or wrong way to do this. Sure there are some better approaches and some things that should be avoided, but know that you are still you. You are still a person, and not just a disease/condition.

If you ever want to drop me a line to say hello, to reach out and talk, please don’t hesitate to contact me.

You are not alone!

Nicole

 

Printed Words Echo The Loudest

Up until this very morning, it has all been discussion between my doctors and I. Several weeks of hints to a diagnosis, hints of things to come, they have all been leading up to this moment. My joints have been telling a story for months now, between the swelling, and painful moments, the evenings spent curled up on the couch because I was in too much pain to move. The fatigue slid into my life, like a band of thieves stealing precious valuable moments, forcing me to slow down. The butterfly rashes, were finally officially titled as such, and could no longer be passed off as just looking rosy complected that day, now I seem to be forever lightly masked, even on my better days.

Today, April 1, 2014 Systemic Lupus Erythematosus appeared in print, for the first time, and is now officially in my medical record. You would think after hearing so much talk of it from my Hematologist, Ophthalmologist, Rheumatologist’s assistant, and especially from my PCP (we have talked a lot about Lupus)  it wouldn’t have affected me the way it did. I was expecting to see it in print this week, just not today, not from Dr. C, my PCP. Today it caught me off guard. It was one of the rare appointments where the word Lupus wasn’t actually spoken, we talked about symptoms and flares, but the word wasn’t mentioned.

It’s funny, I’ve thought long and hard about how I would feel…in that moment, when I saw those words for the first time, because I knew it was coming. I just forgot to consider it might happen today when I went for my weekly PT/INR Check with Dr. C. I simply forgot to consider it might happen like this, and just like that its all too real again, too fast, too sudden, and it’s something I can’t run away from and I have no choice but to accept it, learn to live with it and endure. To fight the good fight, and live life to it’s fullest. In that moment, words of several appointments played through my head, conversations with family and friends resonated loudly, I was saddened, angered at why all of this is happening to me, and even a little relieved all at the same time. Because at least with Lupus, they know what to do with me.

It worked out this way for a reason I know. After processing this for a few hours, I’m glad it was Dr. C that it came from. I have at least a little history with him. I will be meeting my Rheumatologist Thursday for the first time at my follow-up appointment. At least this way, I won’t be emotional in front of a doctor I’ve just met for the first time, because I still have an issue with crying in front of people I have just met. I am thankful to Dr. C for being the one to do this, he has unknowingly made the rest of this week a lot less stressful for me.

Dr. C said something at my appointment today on getting back to a point where I can focus on who Nicole is outside all of the medical stuff going on. This conversation was brought up because I told him I was at a point where talking to a psychologist/counselor would be beneficial, that things had finally calmed down enough that I was starting to process things and needed help. He knows I’ve found some amazing support groups relating to Antiphospholipid Syndrome and Lupus so he didn’t think we needed to focus on support that focused around medical conditions at this time. His words though…focus on who Nicole is, I just hope I can remember.

I know one thing that still remains the same as for who I am, my desire to help others. I will focus on that, and start seeking out ways I can do that. It will at least give me something to do with the energy and give me something to focus on.