Well, Jim is headed to the NIH again. Pray for safe travel for him. He is in ton of pain.
Well after looking at beds for 6 months and settling on something we never laid on, but was cheap for a foam mattress from Sam's club, we finally ordered it....12 days ago, and it's lost. And we are on hold with them. Nothing goes right anymore. I just don't get it.
I posted here a day or so ago, and it was so negative and angry that I deleted it. Well, nothing has changed except maybe my words here.
I did say I am tired of being defined by Jim's illness. He's tired of it too, but what can one do. I cry on the inside because while if that isn't bad enough, it seems that no matter what I try to do, nothing turns out. I buy a shirt, there's a whole in it. I buy paint and start to paint, and it's expired and ruins the whole project. I buy a bed, and it's...who knows. So, now we have to start all over again. I just don't get anything anymore. ???
8 comments:
Hi Dolly girl, I took a chance that You might be blogging again. I hope You are getting some much needed break time while Jim is away. --Where is that bed anyway???--Ridiculous. Life can get so stupid and frustrating at times all You can do is run to Jesus with it. I put on some of the music You have given me and cry /sing along and after a couple hours I usually feel better in my emotions. I'm like You and can't sit still for long so I bake or clean or whatever while I'm praying and listening to the cd s so I know You do this so do it. Love, MJB--Good day with Junie yesterday and saw Ruthie too. Call if You want.
Gloria>
In my best Pittsburgheseonian dialect I say - "Hi Yins"
I'll take a punt, Gloria, and say that perhaps if you categorised Friends, I'd be one of those left out alone on the left bank! A bit 'foreign' maybe !
I first met you and Jim at 9.04am on 7 January 2008. I introduced you to another 60 or so activists supportive and caring in wanting you both to have a better situation. Our communications were frequent, sometimes on multiple occasions each day. It all ended 16days later on 23 January 2008. You left with the blessings and goodwill of 61 people (& about 300 other sideline observers).
Today I wrote to those 61 people and to another 88 people to tell them about the inspiration you generated in the past (almost) 3 years. They know of the battles of the Bald Family. They have been reminded of the farewell message from you. A message of commendation and thanks that you wrote at a time of pain and uncertainity but with the inner courage you still draw upon. Your message was a wonderful gift. I needed to remind them all of the value of the gift because it was and remains of immense value to a group of people with a rare and chronic disease. It was important for them to be aware of Jim's strengths and of your love, care and devotion, Gloria.
I wanted the core of this Blog response to not be directly about you, Jim or me BUT more about your Friends and perhaps friends within an hour of your home.
However, to establish my credibility, I must firstly say that me (young Gaz/Gazman) and my wife (Sue) have a hands-on experience of dealing with complex healthcare. As a rare disease sufferer (no where near as seriously as Jim) for the past 6 years (7 next March) and it being idiopathic, gives me an insight many others may not have.
I know of the loneliness.
I know of the frustration of not knowing what's around the corner.
I know of the pain that can drive you insane.
I know how it feels to know that there may never be a cure discovered.
I know that the fatigue foggs the mind and just not being able to achieve things, everyday things, slowly devastates the spirit.
Yes. I would (& Sue too) like people to understand that some health conditions never end. It's a road with no stop signs or roadside rest areas. It's not like a short trip ticket on the tram.
Yes. I would like friends to drop in regularly. I would like them to open their eyes to see that I can't cope with normal domestic matters. I can't do the stretchy things like gutter cleaning or the heavy lifts. Sue struggles too.
Yes. I'd like friends to just arrive and get into practical help and have the courage to sit down and say - "I'm here to help for a couple of hours, is it OK if I just started on ...." without fuss or fanfare.
Yes. I run out of energy to play host as I did years ago. I expect my friends to recognise that things will never be the same. I've changed. Sue's changed.
Serious, chronic disease is a lifechanger.
Like you Gloria, we love our friends. We appreciate the mega assistance of the past.
I'll be bold to say to your Friends and to my Friends, the trip is not over, it's ongoing. Please think how sustainably you can assist, for now and the longhaul, in a practical way, a sensible way with rewards in your heart alone.
Gaz
Gloria>
In my best Pittsburgheseonian dialect I say - "Hi Yins"
I'll take a punt, Gloria, and say that perhaps if you categorised Friends, I'd be one of those left out alone on the left bank! A bit 'foreign' maybe !
I first met you and Jim at 9.04am on 7 January 2008. I introduced you to another 60 or so activists supportive and caring in wanting you both to have a better situation. Our communications were frequent, sometimes on multiple occasions each day. It all ended 16days later on 23 January 2008. You left with the blessings and goodwill of 61 people (& about 300 other sideline observers).
Today I wrote to those 61 people and to another 88 people to tell them about the inspiration you generated in the past (almost) 3 years. They know of the battles of the Bald Family. They have been reminded of the farewell message from you. A message of commendation and thanks that you wrote at a time of pain and uncertainity but with the inner courage you still draw upon. Your message was a wonderful gift. I needed to remind them all of the value of the gift because it was and remains of immense value to a group of people with a rare and chronic disease. It was important for them to be aware of Jim's strengths and of your love, care and devotion, Gloria.
I wanted the core of this Blog response to not be directly about you, Jim or me BUT more about your Friends and perhaps friends within an hour of your home.
However, to establish my credibility, I must firstly say that me (young Gaz/Gazman) and my wife (Sue) have a hands-on experience of dealing with complex healthcare. As a rare disease sufferer (no where near as seriously as Jim) for the past 6 years (7 next March) and it being idiopathic, gives me an insight many others may not have.
I know of the loneliness.
I know of the frustration of not knowing what's around the corner.
I know of the pain that can drive you insane.
I know how it feels to know that there may never be a cure discovered.
I know that the fatigue foggs the mind and just not being able to achieve things, everyday things, slowly devastates the spirit.
Yes. I would (& Sue too) like people to understand that some health conditions never end. It's a road with no stop signs or roadside rest areas. It's not like a short trip ticket on the tram.
Yes. I would like friends to drop in regularly. I would like them to open their eyes to see that I can't cope with normal domestic matters. I can't do the stretchy things like gutter cleaning or the heavy lifts. Sue struggles too.
Yes. I'd like friends to just arrive and get into practical help and have the courage to sit down and say - "I'm here to help for a couple of hours, is it OK if I just started on ...." without fuss or fanfare.
Yes. I run out of energy to play host as I did years ago. I expect my friends to recognise that things will never be the same. I've changed. Sue's changed.
Serious, chronic disease is a lifechanger.
Like you Gloria, we love our friends. We appreciate the mega assistance of the past.
I'll be bold to say to your Friends and to my Friends, the trip is not over, it's ongoing. Please think how sustainably you can assist, for now and the longhaul, in a practical way, a sensible way with rewards in your heart alone.
Gaz
Gloria>
In my best Pittsburgheseonian dialect I say - "Hi Yins"
I'll take a punt, Gloria, and say that perhaps if you categorised Friends, I'd be one of those left out alone on the left bank! A bit 'foreign' maybe !
I first met you and Jim at 9.04am on 7 January 2008. I introduced you to another 60 or so activists supportive and caring in wanting you both to have a better situation. Our communications were frequent, sometimes on multiple occasions each day. It all ended 16days later on 23 January 2008. You left with the blessings and goodwill of 61 people (& about 300 other sideline observers).
Today I wrote to those 61 people and to another 88 people to tell them about the inspiration you generated in the past (almost) 3 years. They know of the battles of the Bald Family. They have been reminded of the farewell message from you. A message of commendation and thanks that you wrote at a time of pain and uncertainity but with the inner courage you still draw upon. Your message was a wonderful gift. I needed to remind them all of the value of the gift because it was and remains of immense value to a group of people with a rare and chronic disease. It was important for them to be aware of Jim's strengths and of your love, care and devotion, Gloria.
I wanted the core of this Blog response to not be directly about you, Jim or me BUT more about your Friends and perhaps friends within an hour of your home.
However, to establish my credibility, I must firstly say that me (young Gaz/Gazman) and my wife (Sue) have a hands-on experience of dealing with complex healthcare. As a rare disease sufferer (no where near as seriously as Jim) for the past 6 years (7 next March) and it being idiopathic, gives me an insight many others may not have.
I know of the loneliness.
I know of the frustration of not knowing what's around the corner.
I know of the pain that can drive you insane.
I know how it feels to know that there may never be a cure discovered.
I know that the fatigue foggs the mind and just not being able to achieve things, everyday things, slowly devastates the spirit.
Yes. I would (& Sue too) like people to understand that some health conditions never end. It's a road with no stop signs or roadside rest areas. It's not like a short trip ticket on the tram.
Yes. I would like friends to drop in regularly. I would like them to open their eyes to see that I can't cope with normal domestic matters. I can't do the stretchy things like gutter cleaning or the heavy lifts. Sue struggles too.
Yes. I'd like friends to just arrive and get into practical help and have the courage to sit down and say - "I'm here to help for a couple of hours, is it OK if I just started on ...." without fuss or fanfare.
Yes. I run out of energy to play host as I did years ago. I expect my friends to recognise that things will never be the same. I've changed. Sue's changed.
Serious, chronic disease is a lifechanger.
Like you Gloria, we love our friends. We appreciate the mega assistance of the past.
I'll be bold to say to your Friends and to my Friends, the trip is not over, it's ongoing. Please think how sustainably you can assist, for now and the longhaul, in a practical way, a sensible way with rewards in your heart alone.
Gaz
Just want to tell you we love you and Jim.
Hey guys,
First I want to thank Gaz for his post.
Second, I'd just like to say that I have the flu and personally I feel like death; however, I know that I am suffering for just a fraction of what yinz are going thru. In 10 days or so, I'll be able to be back to (well, I can't say the N word here)...I'll be back to wellness where I can come/go and do more/less what I please. Right now, I'm confined to the bed or couch for hours at a time with a few visits to the bathroom from time to time.
I'm so sorry that you are going thru this STILL! I still pray daily for you both. And when I am better, I'd really like to stop in for a visit and find something that I can do around your house with no fuss, etc.
Love to you all,
Mary the Sinner - saved by His grace!
Still reading... still praying. Please be careful driving to the hospital. I desperately hope that Uncle Jim gets some relief from his pain for Christmas this week.
Hello from Oregon.
Ron and Jean
Jim and Dolly,
I want you to first know that I pray daily for you both. We know how hard it is to live through these troubling times. The only option we have is to lean on God and keep doing the best we can with Gods help.
I know the feeling of thinking if it were just over everybody could begin to learn again how to funtion without the misery that encompases these health problems.
I have more than once thought if I could just pass on that it would be a blessing to those who love and care for me daily. Then I look into the eyes of my loved ones from my 6 yr old grsndsughter to my now 80 yr old mother and the love they have for me and even need me that chases those thoughts away.
God bless you folks and keep you strong.
From my heart I love you folks in Christ and will continue to pray.
Always remember, God has a plan and if there with you.
Love Ron and Jean.
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