The New Generations

Lily met her cousin Owen recently at at visit with the family. It was so cute to see them playing together. Owen's dad is my hubby's nephew. His grandpa is my husbands bro and he's in the hospital right now not doing to well. I sure wish he wouldn't have come down here. It was too much for him and now he will suffer.Lily is about 14 mos and Owen is just about 4 mos here. This was the families first meeting with this generation. They are so cute and Lily wanted to just hold him.

We had a simple dinner as we we're all just worried about Dale. We didn't get to see him at all. The hubby visited him in the hospital but he was really out of it. He got home and within hours he was back in the hospitals. Then went home then back to the hospital but this time he was in a coma and on a respirator. He was really in bad cond. and we didn't know if he would make it this time.

Dale needs a liver transplant. Finally came out of the coma and was released today, Thursday. I spoke with him on the phone as he was being driven home. So nice to hear his voice.

Thats all for now. Expect Chrissy is doing well in her new place with Lily. Things are finally mellowing out. Thank goodness!!!

Happy Days are Here Again!

Well its been way too long since I've added to this blog. Truthfully, up until recently things have been extremely tough. But things have taken a turn for the better and we are actually do quite well. There are still aspects that we deal with from day to day that are somewhat difficult, but they are our normal.

That's one thing I have learned, out of hundreds, that really remains true. Things aren't what they use to be, but things are normal. Its taken us a couple years to finally reach this point where MS is just a houseguest. In other words, its part of our day to day life, but its not at all what defines us.

We just celebrated our 26 wedding anniversary. What an accomplishment these days especially with our medical issues. We have found our normal, which may seem completely and utterly abnormal to most. Things I can't put into words, yet.



The grandbaby turned 1 a few months back and is the light for us. We know that she and our daughter will be constants in our lives and that is lucky for us. Lily reminds us that things aren't all that complicated. You wake up in the morning, go to the bathroom, shower, dress and eat breakfast like everybody else. We can't open her eyes to our afflictions actually we won't. We don't want her to feel like her nana and papa are ill or disabled. Not that there is anything that we have to be embarassed about, its just that we want to be her grandparents that she deserves.

Papa and Lily at Train Town

Mommie and Lily at Train Town

GG and Lily just loving eachother

One of the coolest things of late has been our family relationships. We've been pulling closer to them and its added alot to our lives. Not that we weren't close before but my parents are getting up there in age and I don't want to have any regrets with our relationship. I work with the elderly. Have for 30 yrs or so. I've seen families pull apart and when the time comes to say goodbye, the regrets seem to overcome them members that remain. I don't want that.

Well that's all for now. Except that my hubby is doing good. Working as a truckdriver still and to this day remains my hero!

Update: We are doing well

Good Days, Bad Days................

I have to say that the past few months have been pretty darn good. We have had much to look forward to and are very excited about being grandparents. Its amazing to watch the daughter as her body changes. Knowing that she is "housing" and "feeding" our little critter.

Love, Love, Love the idea of her living at home right now. Being a part of this, but closer than most get to be. I would be very sad if she wasn't at home. My husband, who is doing really well, is probably more excited than I. He has wanted to be a grandpapa for a while. Knowing very well that time is not his friend, feeling that his days to be a grandpa are numbered.

I try to get him to live healthier. I offered up my time in an effort to start up the "MS Recovery Diet" with one stipulation. He must quit smoking. The one thing he is doing that probably speeds up this terrible disease. I don't know if he's thinking "what does it matter, I'm gonna go down when I go down, and I can't stop it". I try to give him the numbers on the progression possibilities with and without 'living healthier' but he doesn't see to care.

I know I said things were good, and they really are. But some things never change and him smoking is one of those things. I want him around as we age. I want him here to enjoy our family. The one thing that life, to me, is all about. FAMILY

The MS Recovery Diet

So we have just began reading this book. I began first, trying to make sense of it all. One thing that I've noticed is that there is no shortage of information on MS out there. In fact in some ways I think there is too much information. What I mean is that some of it is contradictory. I've been trying hard to work through everything and hopefully come out with a better understanding of what MS is and the best way for our family to cope with its wrath.

The only catch to my plan is that my husband must quit smoking. I feel that this 'ms recovery diet' will require much of my time and energy to put in place. If he's not willing to meet me half-way, for his own good, then I won't invest the time and money it will require of me. I know this sounds extreme but from what I've read, smoking may contribute to the progression of MS. If he wants to work together on this, I am more than happy too.

I would love to hear from you if you've tried this diet. What you think of it and do you see or feel any changes. Share with me your experiences, I would really appreciate your input.

A long time since last intimate moment........

Okay, so I understand that having MS makes feeling intimate with someone different than it had previously. What I mean is I know that it may "not happen" but its the closeness that I am really missing. The hugs and the kisses. I remember once right after he was DX that he said to me "Hugs just don't feel the same". I know he didn't mean to hurt me, he was just sharing his feelings. Trying to be honest. Trying to explain what he was going through. I appreciate that believe me I do. I don't want to sound like I'm complaining. Although in all reality I am. Just because the hugs don't feel the same for him, doesn't mean they feel any different for me. I still need to feel that closeness and wonder if I ever will again. How can I live without that closeness. Its always been the one thing that would bring me comfort. A big hug from my man; We called them "power surges". Because that's what they were. So you see its not the sexual intimacy that I miss the most, its the spiritual, the feeling of "ONE".

I juST dont understand.

Dealing with the anger................

So, not sure where to begin with this one. My husband is angry, and with reason. There is a horrifying element in his life that he cannot control. He is having problems accepting his illness and all that comes with it. I can understand why but I can't give him answers as to why he was stricken with MS. I sure wish I could.

I've suggested to him the possibility of going to some sort of therapy. Much to my surprise it didn't take any convincing. He was very open to the opportunity to open up and let it all go. So, he has asked that I set this up for him. I've taken this on only because he works during business hours, and really can't make the appropriate calls. He trusts that I will find someone for him that he'll feel comfortable talking to. He says 'who better' than me to accomplish this task. I am his wife, his friend, his lover and his caregiver.

I will look for a female psychiatrist (or psychologist) whichever is appropriate. He's somewhat old fashioned in that speaking to a male regarding these issues wouldn't be manly. Some of the other reasons for this are more intimate in nature. Although our relationship is strong, there are weaknesses in the physical aspects that need to be discussed and worked through. These issues have come up since he has started on MS medications.

My other concern right now is regarding when he should stop working. Do I leave it up to him to decide? Truthfully, in a financial aspect, we need him working. With work comes medical coverage. I really think if it wasn't for that and the fact that we just bought a home, he would choose to go on disability. He feels, and is probably correct, that not working would only depress him more. He comes from a line of hardworking men and that is what men do, WORK.

On the other hand, I worry everyday about him out driving that big rig. Physically is takes alot out of him and I wonder if this energy would be better used to fight his MS. In that he would be more rested, eat healthier, and be safer doing something less demanding on him.

So that is my question.....When is it time to stop working when you have MS? Do you wait until you physically cannot work or do you leave before that point?

Please anyone who reads this give me your opinions and stories. For or against, it doesn't matter. I just need some input on this if possible.

Thanks for reading.

L.Bess