[Ruthie Baker]

yes the pain did eventually subside, I’m under extreme pain from many of my critical DX.  God is holding me though.  My advocate has done all she can do.  Reported home health agency, reported my being neglected put in harms way and has had incidents that resulted in my getting hurt and starting a fire.  She is helping me with other home health care agencies but the problem comes down to location.  I’m in the Montgomery county, but we can walk to Bucks County.  So it’s quite a drive for agencies.  Still working on it though.

[Ruthie Baker]

YES I DO!!!

Actually I’m in a tremendous amount of pain right now.  I know I’ve had this degree of pain as my feet and hands continue deforming.  I got thru the pain many times. I just need to ride the wave.  I desperately need a CNA here to help me.  Kenny is no help.  I can moan in pain and he won’t help me.  I’m terminally ill, and I’m supposed to have 24/7 care.  But no one comes.  I can’t do this alone.  I can’t even make an appointment with my dr to evaluate my symptoms with medication. It’s clear to me that meds I’m on I’ve reached the level meds for PD isn’t enough anymore.

[Ruthie Baker]

thanks, I will do my best.  I am running low on sleep, support and continued progression on many of my DX is wearing on me.  Starting all over with a new pcp really sets me back also.

i don’t want to bring anyone down.  If anyone feels I am doing that by any of my posts, let me know so I can stop posting.

 

 

[Ruthie Baker]

has anyone else feel like the obstacles we face daily as our PD progresses just isn’t worth the fight anymore? 

Im mindfully aware that my thoughts are controlling my emotions as they’re being held captive in my minds negativity committee in my brain.  I have successfully learning and implementing DBT Skills them in my daily life.  I’ve always been the encourager.  Even though I have the skills to control my thoughts, I’m still finding myself feeling “I’m just done fighting” —-

has others felt this way before?  I’m very isolated here and surrounded by family whose so angry in every aspect of they’re lives that I’m often the scape goat.  All of my conditions is taking a toll on me physically and emotionally.

[Ruthie Baker]

I found comfort from reading your post.  And I’m sorry to hear there are 2 too many men that can’t put themselves to the side to  supports, encourage, love –  what I don’t get,is Kenny will complain he didn’t get love growing up; knowing how that feels, then why inflict hurtful remarks?  

Im sorry that I’m not coming across up beat.  I’ve ALWAYS been an encourager to others.  Moving is not possible.  However, Kenny has already been looking around for a new 2- bedroom place for after I’ve passed away.  I was fed up with him that I told him ‘You have no one else to blame that because of him telling our daughter what to do (call 911) that I’m still alive (suffering needlessly).  I have a PA POLST Order (highest legal end stage document) that clearly stated DO NOT SUSTAIN MY LIFE, no horrific actions, never remove me from my home to go to hospital!  It’s filled out by my doctor from what my wishes are.  Basically means any and all Drs MUST follow this Order).  It’s been ignored by police, EMTs, hospitals, Pallative home nurse on several occasions in 2018 alone.  Unlike a Living Will, a POLST Order cannot he changed by spouse or professionals and family.  A living will states  my wishes but a spouse or children can change my wishes for what they want.  I saw it happen to my mom days before her passing in a hospital rather than at home where she wanted to pass away at.  It was very selfish of my dad for not honoring moms wishes.  Living as a terminally ill person, life is all about what patient wants for themselves.  After death, do whatever you want.

im off my med schedule without a CNA to remind me and bring them to me, and having a new dr after my dr of almost a decade moved out of area, I’m left with subbelow quality of care with new dr.  He’s not filling my scripts properly (CVS pharmacists sent new dr all meds with details) so no excuse to change them.  He took me off my morphine dropped me down to tramodal.  What a joke.  This “opioid epidemic “ is only going to get worse for death counts.  And on news if listened to the deaths by opioids is not opioids as taken exactly by Drs instructions, it’s from adding meth or cocaine or fentanal and more than Drs instructions.  I already went up the ladder of all pain meds.  I’m terribly sorry for having a down few weeks.  I don’t want to bring myself or others down.  I’m tired of not sleeping well, attitudes of some, not having my dr and now with new dr having to justify my many many health conditions after been tested and treated and DX already.  I’m going to stop now, I’m too negative right now. Thanks for encouragement.

[Ruthie Baker]

yes I do have an advocate; Brit.  She is a friendly yet a go-get-er!  She have actively looking and making calls for me.  Unfortunately I live in what some would say a nice & quiet area.  Agencies are about an hour away.  Hard to find someone willing to  make that drive.  She has also been reporting my client manager for failure to comply with contract with not sending me anyone.  

[Ruthie Baker]

Just a few more minutes until spouse gets here.  How I hate dreading his coming.  He is very busy blaming me for his life not turning  out the way he thought it would.  I miss the closeness we once shared.  This past birthday, (11/29/1965 – my 54rd) was my 1st card from him that didn’t say how much he loves me and how he doesn’t tell me that enough.  It simply state, “Happy birthday, Kenny” – I miss my one CNA, Bill.  He was a pastor too.  Very hard worker,managed my business things well, never forgot to give me my meds.  Prayed before work and after work with me.  He works full time these days but he will visit me and text me.  Kenny liked him.  My hom health agency hasn’t sent me a CNA for bout 4 months.  So when no one is sent, Kenny picks up more hours.  I qualify for full coverage of care as well as 24/7/365.  Certainly would be great if I actually got coverage.  I no longer can be left alone.  I have already fell few times, and started a stove fire. (Thankfully my 17yr old was home to put fire out). I just stood there watching fire get bigger.  A formal complaint was done and sent to State about Agency not providing me with care.  I’m worried Trump will take action that will result in my no longer getting the full coverage; or other assistance.  God tells us all to love one another; that He created all people.  I understand the ‘wall’ – but at what cost to our Countr?

 

[Ruthie Baker]

would be great to have a “rescue “ inhaler.  My PD meds just doesn’t cut it.  Will insurances cover the cost?  My mom was told about a pill that was approved for yet it would have cost her $300 for one script.  And it wouldn’t extend her life.  Just maybe help her cope better.  Wasn’t worth the money.  But I’m hopeful for this inhaler.

 

[Ruthie Baker]

Hi Cheryl,

You’re right on about needing encouragement.  Like you, I find it hard to participate in my passions or hobbies I once found rewarding.  Often when I wanted to get out and do something, even shop, I’m told “I can get it done much faster alone” or “it’ll be too much on you” or “I’m embarrassed to be around you” –  I keep my curtains closed so not watch cars going up and down the road.  I don’t need to see ppl have lives still.  And don’t think about turning on any lights.  Not same reason, but still a challenge for me.  So you love dancing.  Are you able to dance anymore?  It’s natural to want someone to encourage us, to want to spend time with us, to enjoy being with us.  I’ve learned so much when I went thru DBT years ago ( not just for MH anymore, all would benefit from the skills).  I still utilize them.  I know happiness comes from within. That self-validation ought to be enough.  It’s important but far from being enough.  We were born with the need for touch (newborn grasping mommy’s finger).  I too struggle with being interested in my hobbies.  Since your post, has anything changed?

[Ruthie Baker]

Can anyone teach me how to post and reply for all to see and not only mediators?

[Ruthie Baker]

I’m a tad down right now, but NOT defeated!  It hurts when someone who should love you (spouse, child, parent, friend) refuses to treat me with respect and NOT blame me for what I have no control over.  I get the anger.  The fear.  I long to have my spouse put past hurts and hang ups in his life behind and wrap me in his arms and assure me I AM NOT ALONE!  I can’t control him as I can’t control my health.  What I can change is MY outlook.  I am blessed to have my sister in my life, to have had a loving mother, to have learned how to live my life for the better.  I am also thankful that I stumbled on this site and been accepted as a member.  God is surely good & I want Him to say to me when He sees me (“Well Done” -by The Afters)

[Ruthie Baker]

I struggle with not being independent, being able to jump into the car with one of my kids after they had a hard day at school.  I’d take them for 1-1 time to just listen to them, encourage them..  I still do the encouraging. I can self- validate myself; but it’s nice hearing how my loved ones enjoy being around me.  I hurt so much.  My daughter is holding onto real anger issues.  One is at me, so she says.  I know it’s at my limitations preventing me from being her active mommy.  She is now 19 and I assure her often but she’s angry that we m dying.  I can’t get an agency to send me CNA care that I have approve and 24/7 care.  I’m left unattended.  I depend on others to really help me do my daily routine.  I’m isolated her.  No one visits, and the new pastor asked me to go to a different church.  I tend to go on and on. I’m sorry.