It is 2:47 am; it has been raining off and on for days now. Sometimes with strong winds or lightning, but always with buckets of water. All causing disruptions in my day-to-day world. When is it going to stop? What can I do to be safe? What damage will this storm cause and how long will it last and at what cost to get through it?
Yep, sounds just like a lupus flare. Do you agree?
Living with a lupus flare can be a mild storm or a raging tornado. Why do I say this? I consider myself an expert at storm management when it comes to lupus.
Just before a flare arrives, I can feel it creeping up on me. First the aches and pains descend on me and cause inflammation. Then it is followed by clouded emotions that lead to gross fatigue and lupus fog. It is like the weatherman making a prediction of what is coming my way.
So, I begin to take cover. Just like in a lightning storm. I find a safe place, and grab what I might need to make it through the storm. Since storms are unpredictable, I make sure I have a host of resources and supplies to get me through it. Instead of matches, candles, water, and blankets, I stock up on plenty of liquids (hot and cold), tissues, medications, and call my weatherman (really, it’s my doctor) and give him a heads up that a storm is brewing. I take cover, and make sure I am in a safe place where I can get rest and will be free from stresses. I always make sure to have my “anchor man” at the ready to help navigate me through the storm as needed. An anchor man can be a family member or a trusted friend.
If you are in the “Eye of the Storm,” like I know that many of you are, hang on. This could get scary. Living with lupus is living with uncertainty, just like a storm it can change course in a minute. Your local weatherman may not be equipped to help you through the storm. Therefore, before the storm hits you need to make sure you are connected with an expert who can best predict the outcomes.
It is never a good idea to stray out into the storm without being prepared. This can be catastrophic depending on the symptoms and pain. It is best to be wise and take care of yourself the best that you can.
No one likes being in a lupus storm. The reality is scary stuff. Often, I have felt isolated and hopeless. It’s easy to get tired of being sick and tired. These periods of peaks and valleys in our lives are disruptive to our world, a balancing act between flares and remission. Of course, I would choose remission on any given day. But like the weather, living with lupus is unpredictable.
The goal here is to stay out of the eye of the storm. Be vigilante of what is going on with your body. Do not put yourself in risky situations that could complicate things further. For example, long term sun exposures, not taking medications as described, excessive stress and over doing things.
Recently, I’ve had many of my fellow lupians tell me they are in the “Eye of the Storm.” It keeps me up at night, knowing there is nothing I can do and that this is not pleasant time. I feel your fear, anxiety, and pain. I am sympathetic to what you are fighting.
My burden is a heavy heart. I do not know all the answers or how to fix many of the issues you are confronted with during this storm.
After living with lupus for over 50 years, I can only share what I know and have learned. Many of you are angry and disappointed, and I understand. I’ve unfortunately been there too. Some of you may even be asking “Why me God?” I can go on and on. The conversations I’ve had recently are many.
Waiting for the storm to pass can be the hardest part. Here at the chapter, we have many resources to help you. And we have more resources coming. We are here to help however we can while you are in your storm. We will be there along your side to be supportive and cheer you on however you need.
Many times, we do not like the outcome after a storm. The losses can be very painful. At our chapter we can help you get some mental health support to help with the damage the storm may have caused.
One of the best things you can do is to reach out to the LFA, GOC. We are here for you, to help navigate this journey. Do not try and manage the outcomes of your storm on your own. Talking to someone who is passionate about our fellow Lupians can make all the difference in the world. Sharing common challenges and triumphs with your fellow lupians can be priceless.
While in the “Eye” do not surround yourself with fear and negativity. Remain hopeful that tomorrow could bring you a beautiful rainbow with blue skies. Lean on the possibility that good things, big or small, will come again. Find comfort in those possibilities. Rest and be compliant with your treatment plan.
We will try and work with you to get out of the storm and look towards tomorrow. We may not be able to repair all the damage a storm may cause but we can discover new possibilities for a better tomorrow. We are on an adventure together and you are not alone. I care. We care. My prayers are with each of you daily. Let’s find the rainbow together.
It is 2:47 am; it has been raining off and on for days now. Sometimes with strong winds or lightning, but always with buckets of water. All causing disruptions in my day-to-day world. When is it going to stop? What can I do to be safe? What damage will this storm cause and how long will it last and at what cost to get through it?
Yep, sounds just like a lupus flare. Do you agree?
Living with a lupus flare can be a mild storm or a raging tornado. Why do I say this? I consider myself an expert at storm management when it comes to lupus.
Just before a flare arrives, I can feel it creeping up on me. First the aches and pains descend on me and cause inflammation. Then it is followed by clouded emotions that lead to gross fatigue and lupus fog. It is like the weatherman making a prediction of what is coming my way.
So, I begin to take cover. Just like in a lightning storm. I find a safe place, and grab what I might need to make it through the storm. Since storms are unpredictable, I make sure I have a host of resources and supplies to get me through it. Instead of matches, candles, water, and blankets, I stock up on plenty of liquids (hot and cold), tissues, medications, and call my weatherman (really, it’s my doctor) and give him a heads up that a storm is brewing. I take cover, and make sure I am in a safe place where I can get rest and will be free from stresses. I always make sure to have my “anchor man” at the ready to help navigate me through the storm as needed. An anchor man can be a family member or a trusted friend.
If you are in the “Eye of the Storm,” like I know that many of you are, hang on. This could get scary. Living with lupus is living with uncertainty, just like a storm it can change course in a minute. Your local weatherman may not be equipped to help you through the storm. Therefore, before the storm hits you need to make sure you are connected with an expert who can best predict the outcomes.
It is never a good idea to stray out into the storm without being prepared. This can be catastrophic depending on the symptoms and pain. It is best to be wise and take care of yourself the best that you can.
No one likes being in a lupus storm. The reality is scary stuff. Often, I have felt isolated and hopeless. It’s easy to get tired of being sick and tired. These periods of peaks and valleys in our lives are disruptive to our world, a balancing act between flares and remission. Of course, I would choose remission on any given day. But like the weather, living with lupus is unpredictable.
The goal here is to stay out of the eye of the storm. Be vigilante of what is going on with your body. Do not put yourself in risky situations that could complicate things further. For example, long term sun exposures, not taking medications as described, excessive stress and over doing things.
Recently, I’ve had many of my fellow lupians tell me they are in the “Eye of the Storm.” It keeps me up at night, knowing there is nothing I can do and that this is not pleasant time. I feel your fear, anxiety, and pain. I am sympathetic to what you are fighting.
My burden is a heavy heart. I do not know all the answers or how to fix many of the issues you are confronted with during this storm.
After living with lupus for over 50 years, I can only share what I know and have learned. Many of you are angry and disappointed, and I understand. I’ve unfortunately been there too. Some of you may even be asking “Why me God?” I can go on and on. The conversations I’ve had recently are many.
Waiting for the storm to pass can be the hardest part. Here at the chapter, we have many resources to help you. And we have more resources coming. We are here to help however we can while you are in your storm. We will be there along your side to be supportive and cheer you on however you need.
Many times, we do not like the outcome after a storm. The losses can be very painful. At our chapter we can help you get some mental health support to help with the damage the storm may have caused.
One of the best things you can do is to reach out to the LFA, GOC. We are here for you, to help navigate this journey. Do not try and manage the outcomes of your storm on your own. Talking to someone who is passionate about our fellow Lupians can make all the difference in the world. Sharing common challenges and triumphs with your fellow lupians can be priceless.
While in the “Eye” do not surround yourself with fear and negativity. Remain hopeful that tomorrow could bring you a beautiful rainbow with blue skies. Lean on the possibility that good things, big or small, will come again. Find comfort in those possibilities. Rest and be compliant with your treatment plan.
We will try and work with you to get out of the storm and look towards tomorrow. We may not be able to repair all the damage a storm may cause but we can discover new possibilities for a better tomorrow. We are on an adventure together and you are not alone. I care. We care. My prayers are with each of you daily. Let’s find the rainbow together.