Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Family, Friends, Love and Support - both Near and Far
Hanging on by My Fingernails
That's what I'm beginning to feel like. Since this is an MS blog I will tell you about my MS first, then I will move on to other things. My next Tysabri infusion is scheduled for Wednesday, December 30. During the past week and a half, most of my symptoms have come back. My tremors were down to just a slight shaking of my head, and now they are full-body tremors once more. My arms are weak again like they were before my 1st treatment. However, I'm still walking without walking aids--except, of course, Montana. My balance isn't perfect, but I haven't fallen in quite some time now.
I had an EMG nerve conduction study done on my left arm, because the two last fingers on my left hand are totally numb and useless, my hand is very clumsy and doesn't work right. The neuro (who is leaving and moving to northern Virginia at the end of this month) has given me a referral to an orthopedic hand specialist. I have either a trapped nerve in my elbow region or a lesion. That will probably involve surgery, but that is definitely going on hold until we get Arnie taken care of.
We just got back from a nice walk. The streets are clear, but there are still very high piles of snow from the snow plows, and most of the snow that hit a week ago last Friday hasn't melted. Our street has become a major street, with delivery trucks and 18-wheelers going awfully fast up and down it. Luckily, I'm friends with a woman who lives up by the golf course, which is a five minute drive from our house. She has told me to park in their circular driveway any time we take a walk and to walk in her neighborhood, which has a very small amount of traffic--and almost everyone drives slower there. I can't begin to tell you the feelings I get to be able to join in the walk with Arnie and Montana!
My dear husband is halfway through his chemotherapy. His symptoms are diminishing daily, which is quite a relief for both of us. He still has the cough, but it's much better. We'll just have to see how he does Monday after a 4-day rest from the shots due to the Christmas holiday. He is 85% sure that he will finish this round. After we get the results January 18, we will have to make some major decisions. I love him. He is my best friend and lover, and we've been married for 21 years; however, if he decides on no more therapy I will be behind this decision. So, we shall see. Because of the cancer returning so quickly, our son Scott and his family have decided to move back to the States from South Africa. That is a very good thing, as they've lived in Africa for three years now and we miss them like crazy. The picture I've posted is Lenny, our dear daughter-in-law and Scott, our son, Albert and Alex, our 6-year-old and 10-year-old grandsons.
We had two scares with Montana in the past three weeks. The first was a pinched nerve in his back, which was treated with pain pills, muscle relaxers, massage, and warm heat to the area. Then, he began vomiting every day. I called his trainer who said it sounded like Empty Belly Syndrome, which is when the dog's stomach is empty and begins to fill with bile, which makes them throw up. After increasing his food some, adding protein to his snacks, and giving him a handful of kibble at night before bedtime, it cleared up.
So I am holding on by my fingernails, hoping and praying that things get better and that the chemo works.
My Support Group part I aka My Friends
I couldn't do this without my "support" group. In tru Trini style, we make light of a difficult situation. If I don't laugh, i certainly will cry and that is NOT acceptable; as I was once told, "MAN UP!! MAN UP!!!...we have NO time for crying/tears right now!!!". In their defense, G and T, it was on Georgia Ave in the middle of DC carnival! :-), but i think their reaction made me cry some more. It was 2008 and the gravity of the situation HIT me like a full BUS (It was the first time that i'd actually cried since being diagnosed) ...oye! I will not be able to play mas ever again!
I had actually spent my last carnival at home sleeping on top of a speakerbox on top one of the trucks...if only i knew then what i know now!!!
dem...and a few others
Anyhoo, I digress. My friends; they keep me going...
- G; my rock - I'm not sure if i could have even gotten this far without her. She will bouff (who really knows how to spell that word) anyone into submission to ensure that they take care of me when she is not around. I've had to call her to talk me off the ledge now and again
- J (W?) heeheehee - in Miami this year, whichever fete we went to, the chair was slung on his shoulder like a shoulder bag. He drives a HUGE truck and it has no footladder to climb in and I ketch my ass alot trying to get in (but that's besides the point)
- K - She always ensures that she is available for me to hold on to; even when i say that i'm okay...because she fears G's roar. She also was arrested (okay, she likes to say detained; but it makes for such a better story when we use arrested) because she was arguing with one of Dekalb County's finest outside a party about a small situation that we were in because of the MS. I was standing next to them and the next thing i knew, he was hauling her handcuffed ass to the backseat of his car!!! WDF!?!? :-)
- D is no longer in Atlanta, but he is missed...even tho he did watch me fall twice(!) in one party. In his defense, he was ah lil tite
- A is somewhat new to the crew, but sometimes i feel like she is my BIGGEST supporter. In FL earlier this year, I had a lil fight with the ocean and she was there to ORDER me out - lest the ocean became victorious!
I could go on, but suffice it to say that i really have the best "support group" that someone in my situation could ask for.
I have to mention this...I was raising funds for the MS Walk of Atlanta and I was soliciting funds from someone...The conversation went like this...
Me: Don't u want to donate? it's for a good cause...it's the MS Walk
C: What?? *$%@** MS Walk? Why I must give dem my money?? Who we know with that...I not donating to that...
Me: Well....actually I was diagnosed last year
He's ah red man and he turned even red-DER. I had a good laugh, he - not so much! I reassured him that I/it was okay...we had a long talk about it/my diagnosis etc but poor fella...to this day, I'm not sure if he has totally gotten over that!Laughter is one of the best medicines! (No prescription req'd)
My Support Group Part II aka My family
"the 'rents" are not here; they are still at home in Trinidad. I know that my mother wishes that she were here to be with me while i was being tested and the diagnosis, but I had the next best thing; Gib was here. Many times i also wished she were here too, i dunno bout allyuh, but when I get sick, she is the first person I call...but it is what it is and she lives at home. I've also called her to be "talked off the ledge" a time or 2 and as I mentioned before she has told me that i cannot return the disease, i have to live with it.
I have to credit them both for my positive outlook on this situation. Anyone who knows OB knows that he is the life of the party without even trying too hard and Learls, even tho she is more reserved, eh too backward herself. I know that i have their support - even across the ocean and they are just as "in this thing" as Gib is. As I've mentioned before in tru Trini stylin, there is never a dull moment when we're together. Laughs/jokes/picong (trash talk) cyah done...that is the best way we know how to deal with difficult albeit serious situations. "S" calls it "my caribbean/Trini way of thinking". We really try to make the best of a bad situation and i don't waste time on things I cannot change or control.
This concludes the 52nd edition of the Carnival and the final one for 2009!!
The next Carnival of MS Bloggers will be hosted here on January 14, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 12, 2010.Comments for this post.