Drowning

@buzz23 You are having a tough time! I understand that you were diagnosed with lupus—did all the other issues come about because of the lupus? What lupus treatment are you currently on?
Can you tell me about the doctors that you are seeing and do you feel comfortable with them? I hope to hear back from you!

Buzz23, You certainly have a plateful. In this world of busyness, there are compassionate people that will come along beside you, listen, love you and pray for you. There are some wonderful people in this world that will come to your house, text or email you. People on this website care. I hope you are seeing a good rheumatologist for your Lupus. I am so sorry you are battling this. I am praying for you right now. Hugs & Prayers....

@becsbuddy Thanks for the response.
Yes, most of the other issues are because of the lupus. I am currently on mycophenolate mofetil, azathioprone, and rituximab, plus the drugs to handle the other issues. I am allergic to hydroxychloroquine and have eye issues, so I didn't take that. I was on methotrexate but I couldn't tolerate it. I was also on cyclophosphamide but it had to be discontinued because I wasn't tolerating it well and it drowned my lungs.
I have one primary physician, she is a rheumatologist. I see other doctors as the need arises like infectious disease physicians, ortho surgeons, cardiologists, ophthalmologists etc. I am comfortable with my rheumatologist.
We don't have a lot of rheumatologists where I am though.

Hi, Yes, it is a plateful.
Yes, I have met some people who have really surprised me, in a good way, also in a bad way for others, but such is life. I have been around sick people my entire life, I have seen compassion fatigue and burnout, and resentment arise from those. This is now always a concern with letting people into my life.
I have a few very good friends who make a world of difference, but we are in different places geographically, also they are a few. Me joining this website is not just to help me cope, but also to widen my circle a little.
Thank you for the hugs and prayers

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.

Hey there, Buzz. "Plateful" is right. My sympathy. Today I just wanted to scream and cry. So frustrated and sad about so many things. So off to Mayo Connect I went!

If you haven't already, check out the other conversations here. There's one for humor and another one for inspiring quotes. They help me a LOT!!

There are nice, generous people here. Some are really wise and share their insights kindly. I'm glad to have "met" you here!

@buzz23 You were so right in coming to Mayo Clinic Connect. Look at all the wonderful, caring folks who have responded to you! Everyone here has a problem with their diagnosis, or lack of one, but they have all gained strength by helping each other.
Do you have a therapist or counselor that you can talk to? My therapist really saved my life when i got out of the hospital. I continue to see a therapist when the times get really tough.
And talk with your doctor. Maybe she has you on too many meds with overlapping side effects.
Will you think about what everyone has said here? And give things a try? Please stay in touch, we care about you!

Thank you for your sympathy Anne.
May I ask what has made you sad and frustrated?
That is me to my mother. Hopefully she will get a bit of a break now that I am here.
I have seen the post on quotes, I LOVE it. I am a poetry, literature and quotes person. I will check for the other post.
Yes, I have received a warm welcome here. It feels like a safe space.
I am happy to heve 'met' you too.

Joining Mayo Clinic Connect is one of the best decisions I have made this year. I needed to be here.
I need to find a new therapist. The ones near my home only have sessions in the morning, when I am supposed to be working or in class. The other person who was suggested works too far from my home for me to commit to going there every week. Also, my movements are restricted because of the low white cells. I am currently looking for one who can have virtual sessions and who is okay with afternoons and possibly, early evenings.
I will speak to my doctor at my next appointment this coming Monday. She is concerned about my pill burden. The problem is that I get very sick when she tries to reduce my meds. The inflammation goes through the roof, and I am uncomfortable, swollen, and in pain. This makes things tricky.
At present, the side effects I am struggling with the most, are from rituximab. I tolerate the other drugs I am on very well.
Of course, I will definitely think about and apply the advice and suggestions I have been given. Is that not the point of all of this, that we share and help each other?
I will stay in touch, soon you will be rolling your eyes at how I am in touch too often, hehehe.

@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.