1. < Caregivers

Saying hello!

Posted by jodeej @jodeej, May 16, 2018

I realized that I haven't posted in quite awhile, so I thought I'd "drop by". Lol

I've been stressed, anxious, depressed this month and my supervisor pointed this out to me that it was the year anniversary of my husband's diagnosis. It is an emotion filled month. I did make an appointment to talk to a therapist through our agency's EAP. I'm hoping going maybe once or twice a month will help.

His MELD was to go up again to 29 or 30 this month. I've messaged and asked but haven't gotten a response yet. I think the switch over to the new computer system is maybe bogging things down for them! Lol

On a happy note, we had the family together for our daughter's graduation! She is the first in our family to get a Master's. We are so proud and excited for her!

Have a great day all!
JoDee

Interested in more discussions like this? Go to the Caregivers Support Group.

Mentor
Scott, Volunteer Mentor | @IndianaScott | May 16, 2018

Hello again @jodeej Good to hear from you again and thanks for checking in! I am sorry to hear of your struggles, which makes me even more pleased to see you dropping in! I agree that anniversaries can be incredibly trying times for caregivers. They bring back their own kind of memories --- the trauma of hearing the diagnosis, remembering what life was like the day before, and life from then after. This time of year is a hard one for me too. While spring used to be a time of joy for me, now it is a time of remembering the worst of times for my wife as well as many difficult anniversaries, which all fall in the months of May and June. Back in the day the firm I worked for had an EAP and had some solid folks working there. I hope you find the same thing!

I hope the MELD score doesn't increase and that you get some solid information when you hear back. The waiting to hear is always tough and especially when it is caused by something as frustrating as computer upgrading, etc. They are great and demons, often at the same time I think!

Congratulations on the newly minted Master in your family! That is WAY cool! Glad the gathering was a success and enjoyed! Great memories can be a wonderful salve for the tougher times!

Continued courage, strength, and peace!

REPLY
3 replies
rapidgirl1 | @rapidgirl1 | May 16, 2018

Congratulations on your daughter's graduation. I have Devic's disease and Myasthenia Gravis. I screwed up with Facebook and my account has been disabled. I can't get back to my support regular support group.

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | May 16, 2018
In reply to @rapidgirl1 "Congratulations on your daughter's graduation. I have Devic's disease and Myasthenia Gravis. I screwed up with..." + (show)
@rapidgirl1

Congratulations on your daughter's graduation. I have Devic's disease and Myasthenia Gravis. I screwed up with Facebook and my account has been disabled. I can't get back to my support regular support group.

Jump to this post

Hi @rapidgirl1, welcome to Connect. Let's get you connect with others so that you're not without a support group. Please feel free to join in these discussions and introduce yourself to the groups:

- Looking for info about Devic's Disease / Neuromyelitis Optica (NMO) https://connect.mayoclinic.org/discussion/hi-i-came-here-looking-for-the-same-kind-of-info-about/
- Myasthenia gravis (MG) https://connect.mayoclinic.org/discussion/myosthenia-gravis/

I look forward to greeting you in these groups.

REPLY
rapidgirl1 | @rapidgirl1 | May 16, 2018
In reply to @rapidgirl1 "Congratulations on your daughter's graduation. I have Devic's disease and Myasthenia Gravis. I screwed up with..." + (show)
@rapidgirl1

Congratulations on your daughter's graduation. I have Devic's disease and Myasthenia Gravis. I screwed up with Facebook and my account has been disabled. I can't get back to my support regular support group.

Jump to this post

I was diagnosed with neuromyelitis optica in 2007. I was paralyzed, lost bladder function total muscle weakness in my legs and spasms. I started having vision problems. Then in 2009 was diagnosed with Myasthenia Gravis. I couldn't hold my neck up and couldn't keep my eyes open. I had a hard time swallowing. Retaught myself to walk 6years later.

REPLY
jodeej | @jodeej | May 17, 2018
In reply to @IndianaScott "Hello again @jodeej Good to hear from you again and thanks for checking in! I am..." + (show)
@IndianaScott

Hello again @jodeej Good to hear from you again and thanks for checking in! I am sorry to hear of your struggles, which makes me even more pleased to see you dropping in! I agree that anniversaries can be incredibly trying times for caregivers. They bring back their own kind of memories --- the trauma of hearing the diagnosis, remembering what life was like the day before, and life from then after. This time of year is a hard one for me too. While spring used to be a time of joy for me, now it is a time of remembering the worst of times for my wife as well as many difficult anniversaries, which all fall in the months of May and June. Back in the day the firm I worked for had an EAP and had some solid folks working there. I hope you find the same thing!

I hope the MELD score doesn't increase and that you get some solid information when you hear back. The waiting to hear is always tough and especially when it is caused by something as frustrating as computer upgrading, etc. They are great and demons, often at the same time I think!

Congratulations on the newly minted Master in your family! That is WAY cool! Glad the gathering was a success and enjoyed! Great memories can be a wonderful salve for the tougher times!

Continued courage, strength, and peace!

Jump to this post

@IndianaScott it is always great to have all the kids together. They are just so much fun! This weekend we are going to keep our two year old grandson while his mom and dad are out of town. I'm really looking forward to it!

REPLY
Harriet Hodgson | @harriethodgson1 | May 18, 2018

Thinking of you Jodee. Getting a Master's degree is a real accomplishment. So is teaching yourself to walk. You're one gutsy woman!

REPLY
sallysue | @sallysue | May 18, 2018
In reply to @IndianaScott "Hello again @jodeej Good to hear from you again and thanks for checking in! I am..." + (show)
@IndianaScott

Hello again @jodeej Good to hear from you again and thanks for checking in! I am sorry to hear of your struggles, which makes me even more pleased to see you dropping in! I agree that anniversaries can be incredibly trying times for caregivers. They bring back their own kind of memories --- the trauma of hearing the diagnosis, remembering what life was like the day before, and life from then after. This time of year is a hard one for me too. While spring used to be a time of joy for me, now it is a time of remembering the worst of times for my wife as well as many difficult anniversaries, which all fall in the months of May and June. Back in the day the firm I worked for had an EAP and had some solid folks working there. I hope you find the same thing!

I hope the MELD score doesn't increase and that you get some solid information when you hear back. The waiting to hear is always tough and especially when it is caused by something as frustrating as computer upgrading, etc. They are great and demons, often at the same time I think!

Congratulations on the newly minted Master in your family! That is WAY cool! Glad the gathering was a success and enjoyed! Great memories can be a wonderful salve for the tougher times!

Continued courage, strength, and peace!

Jump to this post

Soap bubbles and tents made from sheets...... 2 year olds love them!!!!! Have fun.

REPLY
Kdawn | @kdawn32 | May 18, 2018

Jodee I have been MIA for a while as well. Technically I am no longer a care giver any longer due to the deaths in my family. In reading your post I am making a leap that we work in similar areas. I wanted to address your mention of EAP. Go check them out. There are some great references. Go check out past webinare series. There are some on caregiving. Also some resources for wills etc. Not something any of us wants to thinking about but something all need to do. As I am dealing with family as the personal representative for my parents will I encourage everyone to be nice to their loved ones and get things in writing with your signature and date. Believe me when I say people will become vicious, cruel, evil, nasty, hateful, and both emotionally and physically threatening over money and things after a death. Even those who profess their great religious fervor. Best of luck. While you are caring for your husband and family don't forget to take time for yourself every now and again. You are of no use if you burn out!

REPLY
jodeej | @jodeej | May 19, 2018
In reply to @IndianaScott "Hello again @jodeej Good to hear from you again and thanks for checking in! I am..." + (show)
@IndianaScott

Hello again @jodeej Good to hear from you again and thanks for checking in! I am sorry to hear of your struggles, which makes me even more pleased to see you dropping in! I agree that anniversaries can be incredibly trying times for caregivers. They bring back their own kind of memories --- the trauma of hearing the diagnosis, remembering what life was like the day before, and life from then after. This time of year is a hard one for me too. While spring used to be a time of joy for me, now it is a time of remembering the worst of times for my wife as well as many difficult anniversaries, which all fall in the months of May and June. Back in the day the firm I worked for had an EAP and had some solid folks working there. I hope you find the same thing!

I hope the MELD score doesn't increase and that you get some solid information when you hear back. The waiting to hear is always tough and especially when it is caused by something as frustrating as computer upgrading, etc. They are great and demons, often at the same time I think!

Congratulations on the newly minted Master in your family! That is WAY cool! Glad the gathering was a success and enjoyed! Great memories can be a wonderful salve for the tougher times!

Continued courage, strength, and peace!

Jump to this post

@sallysue bubbles, sidewalk chalk and a trip to the park so far! Plus, Moana and Lion King. Lol

REPLY
jodeej | @jodeej | May 19, 2018

@kdawn32 I'm so sorry for your loss and struggles. Greed makes people into animals, sadly. We've talked about an advanced directive and a will, but haven't followed through. I went back and read some of your previous posts. It's sad that you've had to learn that the hard way.
Thank you for sharing. I'll talk to my husband about it again. JoDee

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