[SurvivingMSwithHOPE]

I am so sorry so long.

To my Dear friends,

I have been gone quite awhile and lately have had emails and PM’s checking on me and words cannot explain how much they mean to me. I will try not to make this a book. The past 6 months or so have been h**. In June I went into the hospital with a flair, the worst yet. My vision test at the time, as my doctor put it, I was legally blind. The ON was so bad I wanted to pull my eyes out.

My parents of course rushed here and while they were here I learned they had not been getting all their medications. They were in the “Medicare Donut Hole”. Their meds are so expensive and I guess they pay so much and then it is out of people like my parents on fixed incomes to pay for them. Having my own ElderCare business, I know how the system works and felt like a butt for not picking up on this before. I also found out my Dad was making sure my Mom had her before buying his. So I set them up online with CVS and WAL-MART so I could monitor and make sure they got what they needed.

I had noticed that my Dad’s feet were very swollen. I said Dad, aren’t you on Lasix. He said yes. He wouldn’t let me take him to my doctor, so I made him promise me to go to the doctor as soon as he got home. So, he went and in went in the hospital in July and was found to have Congested Heart Failure and had to be put on IV Lasix, and Solu-Medrol. I thought was just for MS people! His blood tests were all messed up and kidney function bad. They did an ultrasound and found he only had one kidney! All his life he didn’t know this.

Well, for some DUMB reason, a lot of doctors don’t make hospital visits anymore and depend on “hospitalists” to be in charge of their care. Well, they got him to a point he could come home and the idiot sent him home on 120mg of Lasix. He would be on oxygen 24-7 and with the oxygen he told me he felt better than he had in a very long time. But I took him to his regular doctor for some blood work and she called later that day and said get to the hospital. The overdose of Lasix had dehydrated his kidney, a term they use, “Dry Kidney”.

At this time they also found that his heart was only working at 20% and a heart doctor came in and said he needed an IUD..defribulator that he was at risk of “Sudden Death”. I said WHOA, why are you just now finding all this out….one kidney, heart not working right. I talked him into it, and he asked my Mom what she thought, since she is a retired RN. I started making plans to move back home to take care of him and help my mother. I felt very guilty taking care of other people’s parents while my own needed me.

I know this is becoming too long, so after a few more issues, he seemed to be doing OK. But the Saturday after Thanksgiving, he was fine then was gasping for air, 911 had to be called and they had to intubate him in front of the house. He was taken straight to the Critical Care Unit. A lot more happened, but I lost my father, my best buddy, on December 4th.

I’ve just returned home and have been dealing with all his affairs since I was his POA. I am so depressed and now know what true heartache is. I feel so guilty about a lot of things, so anyway that is why I haven’t been online. I’ve not even checked my personal email until recently and Becky, Robin, Nancy and Vonn, thank you so much. And Snoodles, in my huge stack of mail from being gone over a month, the highlight was your Christmas Card. Thank you all so much, if I left a name out, please forgive.

I love all my friends here and I have missed coming here, right now I feel guilty if I laugh etc. I am in a big flair again, but refused the hospital, he gave me a huge steroid shot, and going for another Monday. He did the vision test before he agreed and they have done this so much, that I have the letters memorized. Thankfully

[FranksAngel]

i am so sorry to hear about your struggles and your loss of your father ... i know what its like to loose a father ... you mustn't feel guilty for not seeing the signs ... family usually doesn't ... when you did find out you stepped right in to help ... be proud of that ... try to remember the good times you had with your father ... it will make the sadness of his death alittle less painful ... staying busy also helps .... if you need to talk ... pm me ... i have really big shoulders ...

[yeahbut]

Marcia thank you for checking in! My heart goes out to you.

[whispers]

My heart goes out to you. Words cannot describe all you have gone through: your health, your parents' health, the shocking discoveries about their not being able to get all their meds. , the fact that your dad had only one kidney, the escalating problems that led to his passing away. I cannot send pictures of angels because I don't have them but I am glad that someone has so many to share!

I can only add my tears and a hug and add that people may die but love does not. In the end, it is that same love that makes you miss them and cry that will console you and point you in a new direction.

Hope your eyes will continue to improve along with your health.

[Kitty]

Marcia I'm so sorry you've had such a rough time. And I'm so sorry to hear that you lost your father. I know it's hard to accept....I lost mine in 2005 and sometimes it seems like yesterday. Please take care of yourself.....and don't let guilt consume you. You're doing the best you can and nobody can ask for more than that. Thanks for checking in here. I hope things get better for you real soon.

[ali12]

My heart goes out to you ((hugs)). I am so very sorry that you are going through all of this at the moment and you are in my thoughts and prayers.

My grandad passed away at the end of November and it was so very hard and I am still very upset and depressed about it. I too feel that I should have done more for him even though I am only 13 and have health issues of my own. I feel guilty that I wasn't with him When he died i felt and guilty that I couldn't do anything to try and save him. Please know that you aren't alone and if you ever need anyone to talk to, I am here because I do understand some of what you are going through!!

All of the feelings you are having at the moment, even though they probably don't feel like it. The anger and guilt, sadness, anger etc that you described are all feelings that I went through when my grandad passed away and am still going through. Please know though that your dad did love you and I am sure he is so very proud and honoured to have been able to call you his daughter!!

Please don't ever feel guilty for smiling and laughing. I often feel guilty if I laugh but deep down, I know my grandad wouldnt want me to be too sad and i'm sure your father will feel the same.

One thing that has helped me uis to let my feelings out. Don't ever feel guilty for having a good cry - it is completely normal and doesn't make you weak!! One of my friends on this forum also made a good point - they said that even though I can't see my grandad, he is always looking down on me and will comfort me when I'm not feeling well. It made a lot of sense and bring comfort to me. Please know that your dad will always be looking down on you and making sure you are ok even though you can't see him.

Another thing that has helped me somewhat is making a scrapbook and putting all of the pictures I have of my grandad in it. It is still VERY hard looking at the pics but it helps me to be able to let things our and have a good cry

I can't even begin to imagine how hard it is to lose your dad - it was hard enough for me when I lost my grandfather but losing a parent must be the hardest thing in the world ((hugs)).

Please know that my thoughts and prayers are with you at this very difficult time and if you ever need anyone to talk to, I am here.

All my love and prayers,
Alison

[SallyC]

I am so sorry that things have not been going well for you ....and, especially, I'm sorry for the loss of your Dear Father.

My thoughts and prayers are with you.

[NurseNancy]

i'm so sorry for the loss of your dear father.
i lost mine several years ago.
even tho my brother and i followed his wishes and were his advocates we still had feelings of guilt over this and that.

i think it's normal to experience that.
but, you did all the right things to help your dad. and i know he knew you loved him with all his "heart".

grief is a powerful emotion. it will get better with time. try to remember the good times you had. and your mom too.

i hope your MS get under control.
my best get well wishes to you.

[Vonn07]

hey, Marcia, sweetie ... to you for your loss of your dad ...

please, rest (I know it's hard) ... but, please try ... sending warm thoughts and prayers your way!

[jprinz99]

wishing I could give you a big hug in person. I am so sorry for your loss and your ill health and the general overload.

You have no reason to feel guilty! IMHO, it sounds like several doctors were not giving him the best care via the simple acts of communicating with each other and giving appropriate care. The motto "first, do no harm" springs to mind.

Try to care for yourself as best as you can. I hope that the passage of time eventually gives you peace. {{{hugs}}}