Hi Everyone! This disease is so isolating...and I'm a bit lonely

[Tinker]

I have been reading some of your posts and recognize many of your names.  It's nice to come back and read you all again!

So, I am kicking myself for not keeping up...must investigate toneing (?) and spend more time here learning from all of you.

Wow, a lot has happened to me since I was here last.  Even so, I'm grateful to be doing as well as I am.  So doc says Lupus even though I am neg on tests.  Since Sjogren's is secondary to some other autoimmune disease he is thinking lupus.  Luckily, I'm not on any drugs other than neurontin, synthroid, temazepam to sleep, and norco low dose, and lots of vitamins.

Due for cataract surgery soon, knees hurt pretty bad even after just having genicular nerve blocks in both, fatigue off the charts, just like all of you. 
The latest issue:  went back for my yearly breast MRI (brca in '98) at M D Anderson.  They found a 1.5 cm lesion on my right lung and a 4 cm lesion on my liver.  You can imagine what kind of week I had.  They scheduled me for another abdominal MRI and CT.  The liver lesion disappeared but the lung lesion is still there.  I've seen several docs but the local pulmonologist is waiting on films to evaluate.  I may have to have a lung biopsy (it isn't fun but I'll get through it).  Yikes, I don't think I can do chemo again.

So, life just keeps happening.  I've got an almost 2 yr old granddaughter and another boy on the way!!!  So happy about this!

I'll be reading more about all of you and trying to comment. 

[Joe S.]

Nice to hear from you Tinker. There are toneations that you can listen to on my website. I limited them to 30 seconds because of download speeds in 2004. So you will have to play the tone multiple times to reach the recommended 3 to 5 minutes per tone.

I have come across more lists of lower and higher frequencies that the computer can not play through the audio/stereo system. I am editing it for an appendix to my book that my editor wanted. It too a couple of years to get the bulk of it edited. It will take more to add the updates that she wanted. The glossary looks to be the most difficult as the book covers many forms of Complementary Alternative Medicine.

My wife now drives for me and does my chores. I try to get out to watch her bowl. She drove out to BC this year for our oldest grandsons graduation from High School and we renewed our vows.

I hope you and yours are doing well. Have as much fun as you can with your grandkids!

[lorigacc]

Hi Tinker,
  I am somewhat new on the board, but finding it, and engaging with others who understand has been a tremendous support to me.  With autoimmune disease, it does seem like there is always something new to deal with.  I have grandchildren too....which makes us very blessed. I will say a prayer for you that you get thru this difficult time.  Keep on posting...the people here understand..and are very supportive, and wise

[angeldancer]

Hi Tinker,

Welcome back,  I kind of took a hiatus with everything going on in my life.  Looks like we both have some similar things.  Like you I do not want to ever have chemo and radiation again but I am in need of further testing because of what my ct scan has showed.  This autoimmune issue I think we will need to research and keep re-evaluating the rest of our lives.  I woke up last night to immense pain in my hands.  No regular arthritis pain.  Very different and now to figure it out and ask the forum if any has experience it. 

We are here and we will keep fighting and figuring it out together.  I pray we all say something that can help you on this journey.

Peace and blessings
angel dancer

[SjoGirl]

Tinker and AngelDancer, good to hear from both of you!

Good things do happen despite ongoing health and life challenges. It can be tough I know to keep on going, but this group is an inspiration and a great support network.

Best to both of you as you deal with your ongoing issues. I'll leave you with this quote, which I love:

"My scars tell a story . . . they are reminders of when life tried to break me, but failed." @ricardomusic

[Tinker]

Joe, SjoGirl, lorigacc, angeldancer:  thanks for your responses.

Joe, thanks for the explanation on toneations.  I'll try to get into that asap.  Angeldancer, I saw your post about the cancer issue.  I'm always wishing you the best and I'll be watching for your updates. 

I wanted to say hi and I'll be back here after I rest a bit.  This weakness is so annoying but I wanted to acknowledge you all.  Be back after a little rest. 

[irish]

I had done a post for you Tinker and it didn't get saved. I am glad to see you back. Can't forget you with your great name. Sorry to hear you are battling other health issues. Will keep you in my thoughts and prayers.
I am still hanging around on this site. So many more people with Sjogrens and so many changes. Finally getting a diagnosis on so many of the health issues that are related to Sjogrens.

I keep adding more autoimmune diagnosis and having more health problems. You know, I would not feel guilty if I didn't have to go to the doctor. It takes a lot of our time, money and energy doesn't it. Keep; coming back and keep us updated on your health. Irish

[Tinker]

Hi Irish,
I wasn't sure you'd still be here but so glad to see that you are.  I guess we are all in the same boat more or less.  I'm hoping you hadn't been diagnosed with any other problems as you had your share and then some.

I appreciate your thoughts and prayersl  My pulmonologist is ordering me a PET Scan, which will give me great comfort if it's negative.Still waiting on the date and it has to be approved by insurance.

i'm so sorry to hear about your have to add more health problems.  I'll look for your posts about this.

Going to the doc is the last thing I want to do. Putting on makeup and looking presentable take half of my available energy. There just isn't enough energy to do much else.   Wishing you well, Irish.  I'll see you around here.