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What Do You Find The Most Challenging About Living With Lupus?

What Do You Find The Most Challenging About Living With Lupus?

posted August 31, 2022
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A MyLupusTeam Member

When you plan to move to a new area request a copy of your records or print the most critical medical information from your patient portal. That being what is that you want your new doctor to know as paper trail evidence of your medical issues. If possible, ask your current rheumatologist or PCP to write an overview of your health and treatments over the years. Doing these things helped me tremendously when I moved to the Atlanta area. I hope this helps anyone who is considering moving to another area or state.

posted September 7, 2022
A MyLupusTeam Member

Also for my pain due to my degenerate disk neck and back with SLE Lupus and several other auto immune diagnosis- fybomyaliga/Sojgrens Syndrome/ undefined autoimmune disorder./ rheumatoid arthritis in my spine and many joints from hands to feet. I was given a implanted pain pump in 2015 at that time I was bedridden. 2017 I started back walking with walker to now I’m just using a cane as needed.
The pain pump has allowed me to get up and have a somewhat normal life. I’m not zonked out are drugged up. I get a low dosage of 2 very strong pain meds that is administered by my pump every hour I still feel some pain but not so bad I’m incapacitated. I’m able to work, do house work, garden and cooking.
My pump has to be replaced every 7-8 years and it’s filled up twice a year.
I hope this information helps.

posted September 7, 2022
A MyLupusTeam Member

Omg living with SLE Lupus for the past 29 years has been challenging. When I was first diagnosed at 24 I had 3 young children and was pregnant with my 4th. This I have to say was the hardest and most challenging stage of my battle with Lupus.
There has been many ups and downs throughout.
But the very 1st I had to learn to deal with was STRESS!!! This was the trigger to most of my flare ups. Next I had to overcome the fear of lupus taking over and destroying the lives of my family and myself.
After years of trying with my rheumatologist help I’ve finally on a treatment plan that won’t make me sicker just trying to take all my medicine.
At one point I was taking 3 stomach medications for me to tolerate 1 lupus medicine.
After my doctor started doing the chemo rheutuxan treatments for 6 weeks every 3-5 years we are finally at a good place with medicine.
Now if you are like me having to work to make ends meet due to SSA Disability payment will not even cover 1/2 my mortgage. Thankfully I started working from home in 1998.
Wasn’t until past few years I’m finally with a company that I love doing a job I’m at peace with that pays well enough for me to pay all my bills and even save a little Incase I have to be put in hospital.
My employer even allowed me to get short term disability insurance Incase my lupus flares put me in hospital and I miss more than 7 days it will pay me 60% of my pay as long as I’m out.
To top that off my employer also has job protection continuing issues leave that gives me up to 12 weeks to use as I needed when I’m not feeling well are have procedure/ doctors appointments. So if I miss days from work it won’t count against me.
It took a long time to adjust my life, mind, body and soul to deal with SLE lupus, I’m a living witness that it can be done!!
The main this we all must do with any form of Lupus is stress management!!
Stress it Lupus biggest trigger!!!
Managing stress is the starting point in your quest living with lupus.

posted September 7, 2022
A MyLupusTeam Member

I agree to all of the above, been there, had to deal with that. I have been through hell for 40+ years with lupus and 66+ years with multiple autoimmune diseases. Once you think you have one figured out, up creeps another one that you have to deal with, and on, and on, and on. You are welcome to read my story and my posts for specifics. T1D is currently causing me to rethink strategy, current strategy is not working to keep blood sugar in check.
Most challenging: getting people [those with autoimmune (or like) diseases, friends, family, physicians, researchers] to realize that big pharma just masks the symptoms, doesn't really treat the underlying cause. [I chose big pharma for initial 30+ years, either did nothing or accelerated downward progression to my being 2-week terminal with less than 25% organ function across the board.] To treat disease effectively, need to get to the root of the problem. Probably need to think outside the "box".

posted August 31, 2022
A MyLupusTeam Member

Never knowing how I will be feeling tomorrow - Difficult to make plans only to cancel because I can't muster the strength to show up. Worse yet, none of my family/friends understand. Always feeling judged. I don't want pitty and certainly don't expect empathy from people who have not experienced this. I just want them to take me at face value, believe it when I say I am in pain or so exhausted I cannot function and accept it without judgment or expectations. I'm slowly losing interest in any of the things I used to love doing. I wouldn't say I am depressed, but I seem to have no highs or lows - just taking up space...

posted August 31, 2022

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