Looking back, looking forward
I know I have talked before about my goals with this website. I eventually would love it to be THE website for lupus resources, friendship, advice, etc. There was nothing like this when I was diagnosed and I really needed it at the time. But I know I have a long way to go for that to happen & I have to blog every day and research important lupus news that you should know about consistently to make it successful and visited frequently. I am trying to make my life simpler and get the house organized so I have more time for things that really matter to me; my husband & kids, my family & friends & this blog and website which has been an incredible emotional outlet for me. Bottom line, my primary desire is to help others with this disease not feel alone. I want this site, in conjunction with the Lupus Foundation of America's site for educational information on lupus, political activism, local community groups, etc. to support anyone with lupus or suspecting they have lupus. Right now, I just have the LFA's main webpage on the Links Page but I will post other links to different education, local chapters, etc. that are on their site.
When I got lupus. I spent 2 years reeling, flaring and sicker by the day it seemed and was just a basket case. There is no other way to describe me. I was so angry, emotional, scared, in so much pain and most of all so alone with all of it. But it slowly got better after a really rough 2 years. One day I realized that when I stepped outside with dark long sleeve shirts and pants, hat and sunglasses on and started to feel like pounding the heck out of someone, anyone, after only a few minutes that maybe I was overheating or had an issue with the heat, not only the sun. So, I put less and lighter clothes on, stayed totally in the shade with a hat on and a big umbrella to shade me, sunglasses and lots of SPF and I did a little better. The heat and sun still makes me sick though. So when I choose to take the boys to a birthday party and it is outside with no shade, I know I will feel horrible a majority of the party starting about 5-10 minutes after being in the sun and end up with an all day & night headache and spend the next 3 to 7 days feeling like a person does when they have the flu - runny nose, cough, sore throat; all of that I can handle but my muscle aches get even more painful, the worst toe curling, teeth clenching feeling of constant throbbing pain. I chipped one tooth and cracked another from grinding my teeth while in pain awake or sleeping. My muscles also become totally weak where it hurts to climb stairs, shampoo or blow dry my hair, or write more than about 10- 15 words without severe cramping of my hand. It happens when I have to write my son's teacher a note in the morning when I am more stiff & at a lower level of pain meds or when coloring with the boys. So now I have to hibernate all summer from the sun. I live in Florida (the sunshine state
so I have no choice, the summer is brutal here for everyone just like 200 times worse for me. Even when I have to go out in the spring and fall months, it is still very hot and the sun is strong and lots of days I will get almost as sick from just sun exposure walking to the store, UV lights in the store & sun on the way out of the store. I try to only run errands in the morning when the sun is at its weakest and only 1 or 2 stores and lots of times, even with just that, I drag walking back to the car sometimes and I don't feel like I have the strength or energy to drive home. So I get home and rest while my son naps. I have to get a good amount of rest time to recover from a shopping trip. I come home from the stores totally exhausted. For anyone newly diagnosed, my main suggestion would be to listen to your body. When it is tired, it will tell you and don't push it or you will pay for it. Whenever possible, stop. Your body is your temple, sometimes I treated mine like a toilet but I am now trying to worship it as the gift from God that it is. t is imperative that you treat your body good and give it the rest it needs. Sleep is very important to prevent or recover from flares.
Keep your pain recorded in a journal with dates, times, duration, where the pain was on your body, number the pain from 1 to 10 in intensity and also stabbing, shooting, waves, throbbing, however you can best describe it. And give it to your rheummy every time you see him or her and highlight the top 5 you are concerned about. So if he /she doesn't seem to have a lot of time for you, at minimum, go over your top 5 concerns (some can be so arrogant, like you should not be questioning them about things but stay confident. You should ask questions and be your own advocate).
Alright, enough for now. I am having cleaners come today and I have to clean for them, lol. It has been great; this is their 2nd time coming every 2 weeks. But I still have to get the house organized enough on a regular basis so I don't have to stay up half the night beforehand organizing and straightening up for them. Because, as I tell my husband, if it is picked up when they get here, they will spend more time focused on really cleaning.
I will try to post again tomorrow. Make a comment, join the forum, show me people are out there reading!
xoxo
Lupus Celebrity
When I got lupus. I spent 2 years reeling, flaring and sicker by the day it seemed and was just a basket case. There is no other way to describe me. I was so angry, emotional, scared, in so much pain and most of all so alone with all of it. But it slowly got better after a really rough 2 years. One day I realized that when I stepped outside with dark long sleeve shirts and pants, hat and sunglasses on and started to feel like pounding the heck out of someone, anyone, after only a few minutes that maybe I was overheating or had an issue with the heat, not only the sun. So, I put less and lighter clothes on, stayed totally in the shade with a hat on and a big umbrella to shade me, sunglasses and lots of SPF and I did a little better. The heat and sun still makes me sick though. So when I choose to take the boys to a birthday party and it is outside with no shade, I know I will feel horrible a majority of the party starting about 5-10 minutes after being in the sun and end up with an all day & night headache and spend the next 3 to 7 days feeling like a person does when they have the flu - runny nose, cough, sore throat; all of that I can handle but my muscle aches get even more painful, the worst toe curling, teeth clenching feeling of constant throbbing pain. I chipped one tooth and cracked another from grinding my teeth while in pain awake or sleeping. My muscles also become totally weak where it hurts to climb stairs, shampoo or blow dry my hair, or write more than about 10- 15 words without severe cramping of my hand. It happens when I have to write my son's teacher a note in the morning when I am more stiff & at a lower level of pain meds or when coloring with the boys. So now I have to hibernate all summer from the sun. I live in Florida (the sunshine state
so I have no choice, the summer is brutal here for everyone just like 200 times worse for me. Even when I have to go out in the spring and fall months, it is still very hot and the sun is strong and lots of days I will get almost as sick from just sun exposure walking to the store, UV lights in the store & sun on the way out of the store. I try to only run errands in the morning when the sun is at its weakest and only 1 or 2 stores and lots of times, even with just that, I drag walking back to the car sometimes and I don't feel like I have the strength or energy to drive home. So I get home and rest while my son naps. I have to get a good amount of rest time to recover from a shopping trip. I come home from the stores totally exhausted. For anyone newly diagnosed, my main suggestion would be to listen to your body. When it is tired, it will tell you and don't push it or you will pay for it. Whenever possible, stop. Your body is your temple, sometimes I treated mine like a toilet but I am now trying to worship it as the gift from God that it is. t is imperative that you treat your body good and give it the rest it needs. Sleep is very important to prevent or recover from flares.Keep your pain recorded in a journal with dates, times, duration, where the pain was on your body, number the pain from 1 to 10 in intensity and also stabbing, shooting, waves, throbbing, however you can best describe it. And give it to your rheummy every time you see him or her and highlight the top 5 you are concerned about. So if he /she doesn't seem to have a lot of time for you, at minimum, go over your top 5 concerns (some can be so arrogant, like you should not be questioning them about things but stay confident. You should ask questions and be your own advocate).
Alright, enough for now. I am having cleaners come today and I have to clean for them, lol. It has been great; this is their 2nd time coming every 2 weeks. But I still have to get the house organized enough on a regular basis so I don't have to stay up half the night beforehand organizing and straightening up for them. Because, as I tell my husband, if it is picked up when they get here, they will spend more time focused on really cleaning.
I will try to post again tomorrow. Make a comment, join the forum, show me people are out there reading!
xoxo
Lupus Celebrity
Posted by lupuscelebrity at 3/15/2010 9:35 AM 
Categories: flares, Lupus Foundation of America, initial diagnosis, lupus resources, heast sensitivity, sun sensitivy, muscle aches, headaches
Tags: flares patient advocate Lupus Foundation of America LFA lupus sle initial diagnosis lupus resources lupus advice heast sensitivity sun sensitivy muscle aches muscle weakness headaches flu symptom support group
Categories: flares, Lupus Foundation of America, initial diagnosis, lupus resources, heast sensitivity, sun sensitivy, muscle aches, headaches
Tags: flares patient advocate Lupus Foundation of America LFA lupus sle initial diagnosis lupus resources lupus advice heast sensitivity sun sensitivy muscle aches muscle weakness headaches flu symptom support group
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