May 20, 2009

Maintaining Relationships While Ill

Posted in Uncategorized tagged at 11:43 pm by serenamuse

I have recently reconnected with a friend I had not spoken to since my illness. As we have been conversing through e-mail I am finding that I have forgotten so much of what happened in the past. I also found that certain feelings and memories were very fresh for her and for me it has been as if I really have been in a box for seven years. I feel like I am numb. I suppose it comes down to being so exhausted that you really do not have brain power to spend thinking about others or relationships – unless they are immediate – people you see every day.

Have any of you struggled to maintain relationships while ill? I know there are many friends out there that I have not been in contact with, not because I hold any grudge or ill will, I just have not had the energy to make the effort.


May 8, 2009

Resource page

Posted in Uncategorized at 7:04 pm by serenamuse


Tam suggested that I start a resource page. Which you will now find on the upper right hand side of the blog. She has given some references to articles and I have put a couple of books. If anyone finds something of use please let me know and I will add it to the page. We have a lot of people looking for answers. I know they are slow in coming, but I am sure we can benefit from each other’s experiences and advice on what has worked for you.

We had a recent comment from a gentleman in Australia who spoke of bone marrow biopsy. I had been told by an infectious disease specialist in Thousand Oaks Ca that the virus stores up in our bone marrow and so our immune system is on overdrive trying to combat a virus that never leaves – this causes the joint and muscle pain etc. Unfortunately the infectious disease specialist had nothing to offer except pain medication in the form of antidepressants – Cymbalta is the one I tried. I did feel better for about a year then the positive effects wore off. I am now drug free.¬† I can’t imagine any doctor prescribing bone marrow biopsies¬† in the US. It is far too costly and everything is about money when it comes to our health care. I have heard from some that IVIG has helped, but the infectious disease doctor at Loma Linda research hospital felt most of the doctors doing it were quacks. I am sure that is not the case, though it is still in experimental stages and again, very costly so the mainstream medical profession does not want to go there.

I have a cold at the moment that has me a bit down, but I am still doing so much better than before – going to bed at ten awake at seven or seven thirty -sleep through the night. I love it!

Today’s breakfast was a smoothie made with fresh mango, banana, pineapple, strawberries and almond milk. Very tasty. For lunch will be a dark green leafy salad with green apple, avocado, garbanzo beans and walnuts – balsamic vinaigrette.