Hi Jo w.
I just signed on today too. I, also, have been dixed with MGUS, Lupus, COPD, connective tissue disorder, etc. etc. I have had this for the past 10 years.
Until 6 months ago, I finally told my oncologist I no longer want to be tested every 3 months.
And for those poster's that have stated they feel as if a bomb is on their head....that is the same feeling we all feel....or rather like playing a game of Russian Roulette.
MM runs in my family. Three of my father's brother's passed on with it. On my Mom's side, my grandmother and my mother's first cousin...which are blood related on both sides...passed on from Waldenstroms cancer.
In most cases, MGUS NEVER progresses to MM so to all the poster's upset and nervous about this....please don't be. It is only for a small percentage of people that MGUS turns into Multiple Myeloma.
I have now decided - as you did - to ignore certain things. In some articles I have read, the lupus may kill off the cancer cells.
On the other hand, I live on asprins and valium for nightmares. The anti-depressant - the only one that actually worked - SOMEWHAT - made me very tired. I am stopping that also.
The lupus attacks my lungs....or any other part of my body when it feels like it. DO NOT get shots for pneumonia, flu, tetnus, etc. In fact, I never had pneumonia in my life UNTIL I received that shot! I also found out that Sulphites --- like in wine---make my bones and joints hurt the folowing day. So if you don't feel good, think of what you ate or drank the day before.
With both of us, I find the less I think about it the better I feel. If I'm hungry, I eat...if not, I drink Ensure. I also always use hand sanitizer. If I'm tired, I sleep. For people not having lupus...it is not a regular tiredness...it is one of complete exhaustion.
My Onc blood tests are next week. I have not had a BMB for 2 or 3 years which I know the doctors are not happy about...but this is my decision. My IGG averages 3900....My IGM and IGA were finally in the normal zone....at least 6 months ago. I have the M spike...the protein...Bence Jones...but my Kidneys are still fine and no lesions. The last BMB was 8%.
Yes, my family all gave their blood for research for familial cancer. There is also hodkins and breast cancer....both survivors from my father's side also. Frankly, I am a DNA mess....BUT still a survivor.
I am glad I am not alone either.