Drowning

@buzz23
I can feel your fatigue. I spent a few years very fatigued- sometimes on my bed panting. I had some unknown GI autoimmune disease. Eventually a diagnosis was found and I chose to try Imuran. It worked but also caused a lot of infections.
Am I right to think that most of your fatigue comes from lupus?
You seem to be on a few meds for lupus. I assume it’s hard to find meds that work and you tolerate. Hoping you and your doctor can find meds that control the illness without side effects and that it leads to improved energy.

How are you doing now?
Yes, the fatigue comes from lupus. I do very little physically.
Yes, the meds are tricky. I can't take hydroxychloroquine because I am allergic to it and my eyes are not okay. I can't tolerate methotrexate, I can't tolerate cyclophosphamide either and it almost killed me. Mmf, azathioprine and rituximab are the last ones that are available. The rituximab is hard to tolerate, the other 2 are okay.
Thank you, I hope we find something soon too.

Hello. I read your health post & my heart goes out to you. I admire your perseverance! I admire how you keep searching & asking questions! I admire that you joined this supportive group of people that want to help others as well as learn different options for what illness they are challenged with.

I hope you don’t mind me suggesting you to ask/pray to your higher power to bring you an abundance of friendships online (zoom). Sometimes we all need to BELIEVE that there are others just like us waiting to connect by some communicative platform in the comfort of our homes. Health wise many of us cannot be close to people when our immune systems are fragile.

You are also courageous-you get knocked down & get back up! Thank you, for sharing your story, it has gifted me in ways & I too, will pray that your prayers & hopes are answered.

Sometimes I feel like people give you what is meant to be good advice, but is so illogical to the actual situation. I have been told that I need to get more physical exercise. Easy to say if you don't have an involuntary neurological body sway that confines you to a cane or a walker!😉 I could go on, but I think you probably get what I am saying. I would LOVE to get more physical activity, I used to be an aerobics queen, won power walking competitions, hiked all the time......I have been physically active most of my life, but it's hard to exercise when you are struggling to maintain your balance. I am seriously considering trying to go on walks with my walker after the heat subsides in AZ, and I will probably try it, but I am scared of falling on the concrete. But, I tell everyone that, "I'm a tough old broad" [77 yo female still fighting!], and I am!! 😉
P

Sucks! Sorry. I hope you find others to be friends with. I’m 65 had a huge circle of many different types of friends, but now after a move and retirement I have one friend and am grateful to her. It’s to hard when you always feel shitty and never know how you are going to feel to make plans.However I do do A LOT! I go to a lot of outdoor music festivals. They bring me joy and I can engage as much or little as I want! And I go out in the forest. Both of these have kept me
Alive. Good luck and find and I hope you can find some lemonaide . I hope you find your way through Grad School- Congratulations that is a commitment right there!

What happened when u took Retuximab?
I’m supposed to start an infusion next week first time.

I 150% get what you are saying. Especially with the physical exercise, people love to suggest that. As if you sit holed up in your house for fun. I got a pathological fracture with absolutely no trauma, I have osteoporosis and can feel the strain on my bones, I have a hip that spontaneously dislocates, and my range of motion is limited because my joints are not okay. How am I supposed to run or power walk or just go for walks often like that?
Are you able to go with someone if and when you start going on walks with your walker? Maybe try those high friction shoes with a grip too?
Yes, you definitely are tough. Life happened but you continued going on.

Thank you for the kind words. Your admiration warms my heart.
I am trying to live and not simply exist, I have to do what I can to make the most of prevailing circumstances.
I do not mind the prayer suggestion, except that I do not believe in a higher power.
I do believe that there are people like me also looking to to connect, as well as others who may not be like me and are still looking to connect. That is why I am here.
And yes, with a fragile immune system and a fragile body, I cherish what technology has done for us.
Thank you for your prayers.