Category Archives: Long Loving Marriages

MS: I’m so over it!

I’ve often returned to blogs to find that there are no new posts for long stretches of time and I find myself wondering… what happened? Where are they?

A.River5361626165010877771_n

I don’t want to sound too final but, that’s kinda why I’m signing off, and explaining. Yes sir re… I’m over it. For two years I’ve used my blog to keep my cognitive skills sharp (ironic, since it’s my MS that causes me to have cognitive issues in the first place). I know as much as I need to know about this disease, probably too much, and I’m walking away.

I’ve always found it healthier to keep my distance…stay away. I realized and accepted many years ago that it is going to do whatever, whenever it wants. I have been blessed with Relapsing Remitting MS. I have been very aggressive about the disease modifying drugs, diet and lifestyle choices. Each of these I believe are the reasons for my good fortune. I have slowly recovered (and sometimes quickly) from each of my relapses without the use of steroids. Please… don’t get me wrong, sacrifices were made. If I had continued to work, this would not have been the case, not even close. It would have been necessary with many of my relapses to use the steroids to recover more quickly. By not working, my lifestyle changed. My body gets what it needs; time to recover, rest, and reduced stress.

The sacrifices are more my husband’s than mine. As the person with the illness, I expect to suffer. I cannot walk away. It follows me. He has a choice, always.

Here is where I want to tell him:

“Thank you”

Spoken Word Video

Title of poem: “A river for Kevin”

Venue: Busboys and Poets, Hyattsville, Maryland

The MC for the night, E-Baby Poems was awesome! Did you see him come back to me when he saw that I was nervous XOXOX

 

My new blogging interest is…marriage. I want to encourage others to “Get married. Stay Married, and Be Happy”. So please, check back from time to time to see how I’m moving along with it.

 Comments: I always look forward to reading them and responding.

 Take care!!

10678757_Busboys

MS…I’m so over it!

Advertisements

6 Comments

Filed under Ilness and The Arts, Long Loving Marriages, Riding Out a Relapse

It’s a Wheelchair kinda day!

FBwcB

Its 86 degrees out side and a gorgeous day. We spend 8 hours on the Schuylkill River in Philadelphia. Our daughter is here with her college Rowing Team, Univ. of Pittsburgh, to compete in the DAD Vail Regatta. We are very happy to see her Row!

Phone call to Dad last night: “I’ve been to the race sight and it is HUGE, I think you should think about bringing mom’s wheelchair.

Slightly frantic phone call this morning:”Dad, I am here again and I am sure Mom will need her wheelchair. Are you definitely gonna bring it? There’s NO WAY she’ll be able to do this without it!”

Of course we put it in the trunk, and I am grateful that she thought of me.

But…we get there and we have a problem! My husband drives a wheelchair like he drives his car, like a TWELVE YEAR OLD. Needless to say, I am not happy with this. This place is in no way wheelchair friendly. Technically, it is handicapped accessible, there’s even a Handicap Port-O-Potty.  The rest is only good if you want to roll in a straight line, up and down the sidewalk all day.  I have my camera and this’ll never work! Huge loss of freedom. We are rolling along with the crowd, and everything I see around me is beautiful. If I were walking, I could stop on a dime to get the shot. I could turn around to check things out from a different perspective. You can’t do that in a wheelchair. I struggle with the guilt of having him stop. Finally, I can’t take it anymore and I say, “Stop, pull over”, and he does. Now it’s time to use ALL of my marital diplomacy. My daughter and I lock eyes and I see in her expression, fear of the unknown. I slowly rise from the chair and go around the back of it. I hold my husbands’ arm and speak softly in his ear, “Honey, I want to get out and walk. I love you and I really appreciate you doing this for me. I know it’s hard in this heat and with all of these people but, I really need to get out and walk. I am miserable in the chair. Taking pictures is impossible. I need to be able to turn and move around for the shot, and I can’t do that in the chair. It’s killing me.”

Husband: “But Bay, that’s crazy! In this heat, with everything so spread out, there’s no…”

Cut off by me:”I’ll be fine.  I feel very strong and Estizer will be with me. I’ll stop when I’m tired, and rest. We’ve even got our cell phones, so I can call you when I’ve done enough.”  I think this is a great idea and with an affirming kiss I turn and join Estizer in front of the chair. She holds my hand and we begin to walk away.

But wait- WHAT’S THIS?

He’s still here. I turn and say, “Honey, you can go and I’ll just call you!” He says, “No, I’m going to stay with you”. I’m mortified. I say, “What? You’re just gonna follow us with the chair? We’re gonna look retarded!” He looks away from me and with a defiant tone in his voice says, “YES”.

We start walking and he stays with us as if this is perfectly normal. I walk about 100 meters and in THIS heat, it feels like a hundred miles. I need to stop and rest, but I’ve pushed it (determined to show him that I can do this). I don’t see anywhere close to go, and I need to sit NOW. I turn towards him and we connect.  We do that mind link thing, that married couples do.

Without a word, he says to me,” I knew I was right! It’s too hot and you shouldn’t be doing this”. Also, with no words, I say to him, “I love you and yes, you were right. Thank you” Then, I sit.

whol.team-MY002-416 copy

Comments and Thoughts:

How does the heat affect you?

15 Comments

Filed under Long Loving Marriages, MS and Family, MS and Marriage, Riding Out a Relapse

My Zen Colonoscopy and Endoscopy

I had to have a colonoscopy and endoscopy because I have Iron Deficiency Anemia. The concern is that, I might be bleeding inside? I entered into my “Zen place” as if on automatic pilot. I could afford to be upset by NOTHING.

Black-woman-meditating1

The “prep”, which everyone says is so awful, was a piece of cake! I had to drink a Gatorade/ Miralax mixture and a tiny bottle of stuff that tasted like Sprite. All laxatives. Then, just stay near the bathroom, and wait. I don’t know what all the fuss is about.

The actual procedure was even easier. Because my husband and I were running a little late, I entered into my “Zen place”, as if on automatic pilot. I could afford to be upset by NOTHING. At times of potential stress, I am quite good at this. I keep my mind in this moment only. Not 5 minutes behind, nor 5 minutes ahead. I focus on my breathing, taking very slow, deep breaths. I speak very little, and when I do, it’s much slower and even in a slightly different tone of voice. Deeper. At times like this, my “Zen place” is a great buffer against stress. It keeps me calm.

We get to the hospital and the staff is amazing. They begin to prep me immediately.

Nurse 1: Do you have any religious or cultural beliefs that might make this procedure difficult for you?

Me: Well…um, it’s not religious, but, it may make the procedure a little difficult for me. I am depressed and having some separation issues as well, so I need to have my husband with me when I go to sleep, and when I wake up.

Nurse 1: Oh don’t you worry! When you wake up, I’m going to go right out and call him in for you.

Me: No…you don’t understand (sniff, sniff) when I go under and when I wake up, I need him to be (eyes fill now-voice cracks) RIGHT HERE! (Hand on bed-rail indicating…right here!) and tears begin to fall.

Nurse 1 and Nurse 2: Oh weeee understand, and don’t you worry! One of them summons Kevin, who is standing near by, to come to the bed. We’ll have him right here now, and when you wake! The last thing we want is for your blood pressure to go up, so that’s NO problem!

Great…I’m calm and back in my “Zen place”. Nooow, they can start the I.V. to put me to sleep.

I look at Kevin standing by me and say, “Honey, this stuff is not working. I’m not EVEN sleepy!” He says, “That’s because it’s over!

I don’t know what all the fuss is about!

To learn more about relaxation techniques for stress relief, click this link. There are many ways to find your “Zen place”; which is best for you?

Leave comments please. I’d love for you to share how you respond to stress, and what keeps you calm.

 

4 Comments

Filed under Long Loving Marriages, Mental Well-Being, Mind-Body Connection, MS and Depression, MS and Iron Deficiency Anemia, Stress Management

Fatigue- The Anti-Sex

We hadn’t had sex in a week and he had very subtly brought that to my attention say… the last SIX days or so! With this in mind, I try to manage my fatigue today accordingly… I go to the gym and get on the bike for 15 minutes (I’ve worked up to that) and leave. I get just a few things from the grocery store making sure not to stay too long. Just enough for dinner. I’m exhausted. Damn, a girlfriend calls and I excitedly get carried away and talk to her for 20 minutes instead of 5. I’m winded. Now I’m crashing.
Its 7:00p.m., my husband is home. I don’t cook dinner. He tells me to go lay down and fixes himself soup and a salad… I sleep. I awake, have dinner, and watch some TV with him, talk about our days, the kids, and various family matters. By the time we clean the kitchen, shower and go to bed, I’m exhausted, and the fun begins.
I turn my back to him, and then comes that familiar rub on the shoulder. You know the rub. The one that makes your mind start to have a very loud conversation with itself “I KNOW it’s been a week but there’s not a cell in my WHOLE body that’s up for this…not ONE, and I haven’t faked anything in a million years and that’s awful anyway for EVERYBODY! I’ve just got to tell him, there’s no other way but HOW? I should have told him at dinner that I’m too tired again I’ll never lie or have sex when I don’t want to have you ever done that it’s disgusting I’m too special for that so now I just have to break it to him it’s going to be a week and a “…the rub continues and he moves closer! He must not hear my thoughts. There’s a problem here!
The rub goes to a full touch and he actually says something! “Kiss me,” “WHAT!?” I say. I can’t believe it. I turn over to face him in all my nakedness “WHY would you say that?” (because surely you MUST know how I feel) Him, really confused now “ummm because I want you to? because I like it?” Me “But you must know what I’m over here thinking, you MUST feel the ANTI-sex chemicals coming out of my pores, I’m sure it’s like a pheromone or something that’s attracting you. You can even actually see it. That’s weird. Don’t you think that’s weird that I’m sending off anti-sex signals and you’re mis-reading them as real sex signals?” As he backs away from me he says,”No, the more you talk, they’re coming out as real anti-sex signals.” I think this is hilarious! I allow myself to get lost in the laughter. I am turned on by his humor, patience and perseverance. We go on to have amazing sex.

4 Comments

Filed under Awesome Sex, Long Loving Marriages, MS and Marriage