Wonder Woman

So the other night I posted on Facebook that I felt like this could be my last blog. Things are getting difficult now. Can’t get my Toby to do what I want. Can’t find a bed to operate by eyegaze (a/k/a eye tracking) or some other person who can change the remote so I can sync it with bed to make it work with eyegaze technology. I feel more tired lately, I don’t know if it is the new medication, dissatisfaction with getting my device to work according to instructions (which is frustrating), or just ALS hitting on me now.

So, I have been wondering about a lot of things lately.

1) I wonder why some people visit one time, promise to come back, and are never heard from again. When you make a promise to a dying person, they don’t forget.

2) I wonder how many people actually read my blog and how many just click like on Facebook.

3) I wonder how many blog readers have taken the time to find out what ALS really is all about.

4) I wonder sometimes how a family can be so F’ed up that they can’t say “I’m sorry,” or tell you why they are angry.

5) I wonder what it takes to have to deal with these issues when you are dying. When you are looking death in the face, you can wonder about a lot of things. Not all of it is good.

I once read a sign on someone’s property that said Friends are our True Family,. At the time it shocked me to see the sign, especially when you are leaving a relative’s home. But I saw the true meaning behind that message when my mom passed and those relatives did not show up. I know all families have their own horror stories and that mine are not
unique, but I could probably write a book about it and it would be a bestseller.

So I don’t know how often you will see a blog post from me or if they will just be shorter. I believe I wrote on Facebook that I was really only telling you 90% of my true story. So I will throw in a few teasers about my full 100% story:

A) The hospice nurse just left. We called because I was very uncomfortable and felt like I had to take a wicked pee. I felt that something was wrong with my Foley catheter. There was. She worked her magic and the urine came flowing out. If you have ever popped a zit, you will understand the feeling of relief you get. Well, that might not be the best example, but it’s all I got right now.

B) The other day I had diarrhea so bad that I had to cancel a friend’s visit. They give you some really strong laxatives when you can’t go. The laxative is better than the alternative method and believe me I’ve had it done. My husband had to do it, and he was pretty good. It put me on the right track. And that laxative – wow. It filled the bed pan to the top.  the clean up was a long ordeal.

Picture 68

 

C) I have never smoked but recently took up vaping! Actually it’s a nebulizer to help me get all the crap out of me that you can simply cough up

So how do you like hearing what it is really like to have ALS? It’s about the same amount of fun my husband and caregiver has everyday along with his usual daily breakdown watching me slowly slip away.

 

AML. AML, Joseph

24 thoughts on “Wonder Woman

  1. Laura Kennedy says:

    Kathryn there are no words…I’m so sorry that this is happening. I do read your blog and I do read your posts. I pray for you daily and Joe as well. I don’t know what to say but I wanted you to know I do read and I do pray and care. I miss the days at fresh affair with you guys. I miss those days seeing you at church.

    Like

  2. Elizabeth Sullivan says:

    Dear Kathryn and Joe. I do not personally know the pain you are going through, but I do know the hard work and pain of your loving husband. As you know I lost my husband to this dreadful disease and I cared for him for five years and watch him go through what you are going through. My heart goes out to both of you. Sending hugs Liz

    Like

  3. kellykago says:

    I’m so sorry..I have ALS too. This is my biggest fear being forgotten and lonely when I die. I’ve only lost my speech and people have already stopped wanting to visit. This disease sucks.

    Like

    • Kathryn Manginelli says:

      Sorry you are suffering with ALS too. Unlike you, I have a great team of neighbors, friends, and church people who help us out from time to time. My husband is a saint. I am on hospice so I even get a volunteer. I recommend you ask about palliative care and hospice, when the time is ready. Family who avoid you, can be put in the back of your memory and forget them like they forgot you.

      Like

  4. dad says:

    Dad Here,
    Thanks for the lessons, I can never express to you how much you mean to me. You are my hero. I have learned more from you than most life experiences. Hugs , kisses and tears.

    Like

  5. Margaret Ventimiglia says:

    Kathryn, I do read your blog and posts. I wish I was closer so that I could visit. I was thinking of making the trip when Lauren went on vacation ( since I watch the kids 3-4 days a week). It mom wound up having a hair-line fracture in her hip and was having trouble moving so there went that trip! The Dr. Put her on tramadol for the pain there is no surgergy ( thank God) but it will take at least 6 weeks to heal. Along with that they told her she has advanced arthritis in the same hip. Just know that I think of you all the time, and reminisce of our hang out days with bring a smile to my face. Our prayers are with you always. Hugs Margaret😍💜

    Like

  6. Kikkie & Paul says:

    Dear Kathryn and Joe.

    I pray for your comfort and peace everyday. I have read all your post and I am truly amazed how you do it first of all. I am convinced that the HOLY SPIRIT has given you the inner strength. When we are ill or not ourselves we have time to think. I see how much you have been thinking and you are asking good questions. Only GOD has the answers and you will have the ultimate conversation with GOD soon.
    As a Life Insurance and Long Term Care Professional for 20 plus years I have seen the heart ache that my clients and families have endured during sickness, illness and yes death. Now that it has finally hit home it is so personal to our family.

    It has been a JOY to know you and spend time with YOU. God Bless you. Love & Hugs

    Paul

    Like

  7. Lisa Fischbeck says:

    I appreciate your candor. We can’t sugarcoat this. It’s bad. Really really bad. I love you and Joe. And am inspired by you both. And not just for your strength, humor, etc. But for your candor. Prayers can easily seem hollow. But I pray that your humor and candor would continue. And that your would also know the Peace that passes all understanding, more and more. It’s beyond our understanding, that’s for sure. Lisa

    Like

  8. Alisa says:

    Love you .. thank you for sharing your 100%. It’s always how I’ve looked at you.. everything 100% .. love ..silliness.. strength.. beauty. Don’t focus on people saying sorry it’s a thing that is a waste of time. People suck sometimes(not us lol). You truly are wonder women. I love reading these blogs and In my head can hear you saying all of this out loud while I read. Love you both ..

    Like

  9. Marge & Sal says:

    Kathryn & Joe,
    I rarely go on Facebook for various reasons but I do get your blog via email notifications.

    Having been a nurse and lost a loved one I do have some idea what Joe is going through.

    Kathryn I have nursed people till their dying day and still wonder what they truly feel. I guess everyone is different. Some people surrender and some fight. I know you’re a fighter!

    Please know that we pray for you guys all the time! I wish things were different and we could be there for both of you. I’m not sure why God makes life so hard for people who don’t deserve such hardship. I find myself saying the Serenity Prayer numerous times a day. May God grant both of you serenity! 🙏🏻

    Love you guys!
    Marge & Sal ❤️

    Like

  10. Erik Soldwedel says:

    I have been educated and trained in Clinical Pastoral Education; worked as a Hospital Chaplain and Mediator for conflicted groups. None of this can prepare me or anyone else for what Kathryn is experiencing.

    Sharing her life her bluntness with her passion and tenacity is a gift of love. Some same what would Jesus do? My response is just what Kathryn is doing.

    I am in awe and grateful that you have touched my life.

    Liked by 1 person

  11. Ethel Ball says:

    Kathryn, I’ve said this before, but now more than ever I know that you are the strongest person that I have ever known. You and Joe are unbelievable in your strength, your courage and your faith. You are the shining example of those who keep the vows “for better or for worse”. My heart goes out to you both. Thank you for sharing your journey with us. May God’s blessings be with you always.

    Liked by 1 person

  12. Michele Carlson says:

    Kathryn, love your candor and your strength. Thank you for sharing… its incredible you find the strength. Please know you have an audience and have touch our hearts.

    Like

  13. Linda Lynch says:

    Dear Kathryn
    I faithfully read your blog I am inspired by your strength and amazed at the love and devotion that Joe has shown.
    I cannot even come to understand what you both are going through.
    I love you both sincerely and eternally.
    Love,
    Linda

    Liked by 1 person

  14. Paul Curtis says:

    My dear Kathryn,as I sit here and read your blog,I can’t stop the tears .I’m truly sorry for all the shit that happened in our lives. I know my visits are short,but it’s what I can do.i will never forget being with you before ALS ,during ALS and after .I read what you said about some family ,this family sucks, I’ve learned that along the way.the best part of this family is waiting for you 😇and will take care of you .if I could only have some of your strength, knowledge,and wit, I then would be half the person you are.i will continue praying for you and Joe.and I will always love you.i truly am trying to get to visit you again. I need your hugs and kisses. Love love love Paul

    Liked by 1 person

  15. Joanne Harper says:

    Kathryn, I always read your blog. You are never far from my heart. I think about you and pray for you everyday. I hate that you’re going through this. I pray and hope that you find God’s peace in your heart. God’s love is what truly matters. Please don’t let those people into your heart and hurt you. I love you dear friend. God bless you and Joe.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s