What has been something you've had to give up or spend less time doing that you used to love to do?

For me it’s cooking. I love to cook. Always have. But now I rarely have the energy to. I would cook great meals everyday and make full thanksgiving and all holiday dinners for a minimum of 30 people (and that’s only about half of my huge family) by myself. Summers were filled with me doing huge bbqs and grilling for my huge group family and friends nearly every wkend. And I loved it! I cannot remember the last time I really cooked something more than some basic Kraft Mac and cheese or just easy pasta and sauce. And even that is an effort. Not being able to cook has really depressed me. Especially because I know how much my grandfather loved and misses it. It’s become even harder now that I’ve also been working overnight full time, I’m usually asleep mid-late afternoon with even less energy to make dinner prior like I used to try to do. So it got me wondering what are some things others have had to give up or spend less time doing that used to be a love and passion before lupus took control?

Oh Natasha I truly understand. There are so many things I miss. I miss mountain biking in the woods, I miss my yoga classes. I miss being able to go out and work all day in my gardens. I hope with the medication and determination I will one day be able to do these things again. I am not ready to give up everything I love about life. I know I need to bide my time and work on getting better, because I believe I can be better than I am. Maybe I'll never be who I was either but I will keep trying. Hang in there, nothing is for certain and you do not know what a year from now might be like. Maybe cooking will become a family thing that everyone could enjoy together with you at the helm. Who knows, but stay positive and positive things will come. Change is constant but we can make it a positive thing if we choose, we just have to adjust. Tons of hugs....do you have some recipes you would like to share?

It has definitely been tough. Something else that’s been hard to give up/do less is playing outside and going to the park with my boyfriend and his 4yr old son. If I wasn’t cooking that’s how we spent every warm day. Now I’ve been trapped in the house from exhaustion, pain, and photosensitivity. I miss my old life. Sometimes I try to act like I can do it all But then I’m sooo wiped after and sometimes in the middle of it. Last summer I had planned to plant a vegetable garden for this spring. That idea got completely written off the sicker I got over this year.

As for recipes I wish I had some but I would really have to think long and hard about them. I cook on the fly and it’s always “add a bit of this and let’s try some of that”. I never cook a dish the same way and I eyeball every ingredient I put in. My grandmother would always tell me I need to make a recipe/cook book and my grandfather would always tell me I need to open a restaurant. Both completely different from the forensic psychology degree I’m working towards lol, but deep down inside those 2 were always things I would love to do later in life.

It’s been really hard to accept that I can’t do it all like before and have to constantly make such major adjustments in my life to work around the control lupus has on my life.

Hi, Natasha.

I can certainly understand feeling as if Lupus has robbed you of control over who you used to be and what you used to love doing. That is a completely human reaction to loss. I do feel, however, it is very important to be careful not to let these feelings overwhelm and define us and rob us of experiencing life. One of the best ways I have found to cope with grief and loss of my former self is to instead try looking at my illness and its’ limitations differently…

What positive things within myself have developed as a result of my illness? I have developed a greater sense of empathy for others and a much richer sense of appreciation for life, moment by moment.

What other skills or hobbies can I learn or develop? I always wanted to read more, but never seemed to have the time. Illness, although not quite what I asked for, has slowed me down and offered me this opportunity.

How can I capitalize on what strengths I still possess? I have always cherished self-expression and connecting with others. I write now more than I ever have and have met many wonderful friends on these communities.

I may have lost the ability to do some of the things I used to be able to do, but I try to focus on what I can do instead and how life is still full of possibilities.



Hi Natasha,

While I'm just starting on this journey with lupus I have lived with RSD and then I lost a leg to infection a couple years ago. I have to agree with Laurie. We might not be able to follow the road we were on but the new road has many exciting things to experience and do too. I was going along merrily with my own practice in adolecent counseling when I got hit by a door at a resteraunt. Within 6 months I had to give up my practice because I developed RSD and the pain had spread through 45% of my body. I discovered the internet and met a lot of friends all over the world that I have had the pleasure of getting to know and some I have even been able to meet face to face. After getting the RSD under control I decided that the cost and time of restarting my practice was more than I wanted to invest so I started teaching first graders. That was a complete joy and experience that I'm very thankful for. In 2012 I got an infection in my right ankle and ended up in the hospital with septic shock and after 8 months I was able to leave the medical facilities at the cost of a leg and a breast. Once again I was taken off the road that I was enjoying and looking around for what there was that I could do. I am now doing volunteer phone crises counseling. So far even with the pain from the lupus I have been able to maintain. I'm sharing this with you to let you know that it is good to remember with fondness where you were but to look forward with expectations and excitement to where this new experience is going to take you and what you are going to learn along the way.


I have a severe heat intolerance, so it makes it very difficult for me to do a lot of things. I usually can't be outside for longer than a few minutes, or I start to drown in sweat, my heart starts pounding, and my hands shake so bad I can't hold anything. I loved going for walks on this trail near my house with my best friend, but now it gets too hot and I get too tired to do that. It makes me sad that I can't be out with my friends like I used to, but I have found other fun things I enjoy doing. I hope you can get back to cooking like you used to!