Friday, June 28, 2013

BOB

Hi Ya'll

So, I'll start with the nitty gritty stuff and physical issues and then end on a funny note..

First of all, things are changing once again. The pain is increasing every day. I had to have my pain med increased twice in one week. My fatigue is getting worse and worse. My memory is an issue more than usual. Today I was on the phone with a dear friend and she's driving to work. She first went to a convenient store, then called me back, then she was in line at D&D's for coffee, as I was telling her some things that have been going on lately with me. She had to say, just a sec to me three times, to one, give her order, two, to find her money to pay, and three to get her order, oh and four to get upset about how long the line was there and why did she bother going there today. So there were lots of references to being in line for coffee. I had finished my story and was thinking she had just left the store or something I guess, because I asked her if she was at the coffee shop yet. Then it hit me right away at the same time that she said, no I am at work now. I did realize my mistake but not till after I asked the question. It was so clear in my mind that she had not gone to get coffee yet. I never get that off track with whats going on. It may seem little but to me it was a huge change that happened. I started crying and crying and am so upset that these things are happening. It happened with my aunt and uncle two days ago? not sure of that either.....I tried to multi task and be the go-between person and make decisions for others and I got way too overwhelmed and couldn't do it. I had to cancel plans I had made because I had hit my "wall". All plans were canceled for the day. No nap was going to regenerate me. Naps don't do that anymore after I've hit my wall. I have been having lots of twitches and some neuropathy in my legs. My breathing is worse, mostly due to the humidity.

I know I'm sounding frantic....it's because that's how I feel inside. Frantic that things are going downhill fast. Maybe that's ok? Maybe thats what is supposed to happen. I've asked for this. I worry because so many of my family and friends are so very busy and I'm scared I'll be forgotten and be a huge burden.

It's all so unknown and scary and today is most likely the last time I'll see my aunt and uncle, they leave on their plane tomorrow morning back to SC. I said that last time they were here but I feel this time it really is true. How does one say goodbye forever? I just don't think you can really. Not at my stage. I have to just be here now and forever goodbyes don't fit how i'm feeling today, right now. It's still not easy to think of things in that way and to NOT think.....this is the last time forever. ........etc......

So, ....the funny part, at least I think it's funny.

So as some of you know, my dear friend Nancy named my medication pump "Bob" and ever since then everyone who knows that, talks about Bob like he's real. How is Bob today? I found another purse to hold Bob. My nurse says that I may receive a new Bob today, or as I said to her...Bob 2 or 3, I think we're on Bob number 3 now. Soon we'll have little outfits to be made for Bob. Get a wig for him. The scenarios go on and on. We laughed so hard about it after my tears had dried. I wanted to end our conversation on a happy note. The same way I want to end the blog today.......

Keeping it Real

Blessings to you all !

Tuesday, June 25, 2013

Duck Boat and Acceptance

Wow has it been HUMID here in the Northeast!! 90's today and humid. That is not the best recipe for me and my lungs.

I went on whats called the Duck Boat with my mom, aunt and uncle. I learned some things about Portland that I didn't know about. There was a handsome guide so that was nice on my eyes. hee hee hee. I even dressed up with a new mini ruffly skirt. Kept me cool in the heat. The Duck Boat spends about a half hour on land and a half hour in the water.

I had about 45 mins after I got home after we all had some lunch before another friend came by to visit.

I have A/C, granted its not the best one but its not horrible and it was free last year, so i'm sooooo grateful for it. So, even with the A/C my breathing is not good. I find that when I talk fast or a lot that I am suddenly out of breath. I at one point today, with my friend, thought I may hyperventilate.

I wish I could lay down now and sleep for a while, but I have my step sister coming over for a bit to visit. She will understand me not being able to talk a lot. I don't get a lot of chances to see her so I grab the time when I can get it.

It's just so frustrating not being able to take a nap, feel regenerated and go out again to do the next activity. Nope, I'm done. I could have one or two people over here for an hour or two to chat or listen to a podcast or maybe watch a movie but that's about the extent of it.

When relatives visited in the past, I would see them for breakfast, we might go for a walk somewhere after, or go shopping a bit, then maybe a rest, then out to dinner somewhere fun.

Well, not for me anymore.

I know I'm whining......It's my blog, I'm allowed to , so there! lol

I watched "my" film again with my friend who hadn't seen it yet. So that makes the 4th time I'd seen it. I got a little teary eyed when I was crying in the film saying pretty much what I am now writing about. About how the fatigue is so much more and I can't do what I used to be able to do. My aunt and uncle are only staying for four full days. I want to do as much as possible with them but my body says NO! It just pisses me off. Makes me want to crawl into bed and not get out.

I am so grateful for SO many things I still have in my life and for so many things I still CAN do now but sometimes I still get pissed off. Acceptance is a bitch, let me tell ya.

Sigh.......