7 hour interval starts today...life goes on with uncertainty and fear and love

...almost off of the oral pain meds...since my pain was related to the g tube...actually...the intense pain began as an upper bowel obstruction...after the g tube was placed and the bowel obstruction improved...the pain was directly caused by the g tube...June 1 the g tube was painfully removed ( unusual for most...I'm now finding I have severe pain when there is any invasion in my abdomen)  and the pain diminished to zero...then the cold turkey off of the dilaudid was mistakenly done through hospice...drugs were put back into my system ...fentenyl patch and oxycodone ...so I could slowly detox the drugs from my system....as I remain pain free
( a place I have come to appreciate beyond belief) I continue to ween myself off of all meds ...I'm now at a seven hour interval from the orals and on sunday the plan is to slowly decrease the patch amount.

The current chemo I'm on is causing my feet to blister and burn so I haven't been able to go for my walks that I love so much...and yet ...I have it so much better than most....I'm still so grateful...I know what I'm facing now...I know the chemo I'm on can only be used for less than one year...actually around 9 months unless the side effects become too much. I know what is happening and I'm preparing every moment for what is coming. I know there are miracles and I also know the pain that I have felt is haunting me. I never knew pain could be so traumatic.

I have the tools from my spiritual training to surrender...to allow...to dissolve...and there are moments when I can do this...then ...I find myself waking up in the night afraid of the pain that may be around the corner....then I find peace again and so it goes...around and around and around...if it weren't for the love of  all of you I don't know how I would have made it so far...I feel your love and I welcome it into my life on all levels.

I meet with my Dr. this friday ( a normal appt that happens before chemo...next chemo is number 4 on July 5) I'm also hopeful  that maybe we can establish a relationship with radiology so if and when I may need tubes or drainage procedures that they treat me with the humane understanding that for some CRAZY reason...I have PAIN when most feel relief...it's not just PAIN it is unimaginable pain. While I was in the hospital the last time...I was getting another tube put in and they didn't give me enough pain meds and I was screaming out " I FEEL THIS !!!! PLEASE HELP ME!!! Pain continued...

I wasn't going to say anything about this again but so many of you have told me that because of the honesty of this blog...it is helping so many of you who find yourself in places where you don't know what to do ...what to say...what to ask for...

I continue to navigate through the financial craziness of my situation...I'm in hospice through my insurance which means I have a few categories as to where financial responsibility lies...for instance...I just found out the CAT scan that I'm supposed to get next week is not covered because I'm with hospice ...even though...I can still see my Dr. for care...this has become incredibly complicated and frightening...the money from the fundraiser that was so lovingly raised through summer's hope and others has been going directly to pay for medical bills that were already coming in...now more bills are mounting and money is running out again...

I'm currently filing for social security benefits which will help a small amount but will not be enough to pay the newest bills coming in and it takes months for it to kick in...I don't know what to do other than to ask for continued support as the summershope fundraiser ran through April and that money is almost gone...I'm embarrassed to have to keep asking but the truth is I need help ongoing...I'm allowed to receive gifts and donations ...there is a pay pal account set up through the summershope website and there is the option of sending directly to me...I'm really scared and the financial worries have been exhausting ...with the generosity that has allowed me to live so far ...it's so hard to keep asking...please let me know if any of you can continue to help me or if you know of anyone who has financial abundance and you can direct them to me.To qualify for certain programs you really have to be homeless...I know what I qualify for and what I don't...I have already had help looking into this. My current health insurance is what is also allowing me to have hospice...that amount to just have that exceeds $1200 per month...other ways to get on hospice are possible  but I don't qualify. The medical bills that I thought were not my responsibility become my responsibility due to so many reasons it would take hours to explain it...I was on the phone for over 4 hours yesterday just so I could buy more time with appeals and this is a part time job...I have to pay or it will go to collections...

All I can do is ask for your ability to help me...I would appreciate it so much! I didn't want to file for social security because I always came back to work...All I want to do is come back to work..I miss my life and I miss all of you and all I want to do is to live my life..

I have spent my entire career helping others and forgot or didn't know how to set up a plan for myself...I made enough money to share expenses and just wasn't able to financially build myself a nest egg...then time passed so quickly and other illnesses began to happen and then more and more time passed me by just trying to get by...I'm trying to fall back into the net of surrender...I'm trying to trust ...I'm trying to take the remaining breaths that I have and honor love in all directions ...to shower all of you with my love and support...to let myself go if that is what is being asked of me...

Please help me to surrender.. I will help you too!

I love you