It Was Nice While It Lasted

It was there, I blinked and almost missed it. Those fleeting moments, hours, days and even weeks when I feel almost normal. I always think I am not going to be able to recognize what normal feels like. But it's like my body relaxes into it and says...aahhh, I remember this....

We went to a game, we had sex twice, went out to dinner a few times and still I was feeling good. I hadn't run errands in months and I needed to get out and get some things so I talked Andy into going out. When it happened I can't recall. What I do recollect was on the way home looking at the clock and thinking I have been going steadily for 6 hours, wow, good for me. Andy wanted to take a nap and I got on the computer and turned on a football game and that is the last thing I remember for 5 or 6 hours. Uh-oh. If I didn't know it before, I am now crystal clear, my good days are gone. Slowly over the next couple days all the signs that let me know I am flaring began to show up. Both the big ones and the little weird ones that I have noticed happen when I flare.

Hoping to deal, I noticed that in that short amount of time my thinking had quickly shifted to that of an able bodied person. Each night I found myself eagerly making plans only to dejectedly cancel them the next day as I realized I was unable to do them. When I am beginning a flare, my mind tends to work in over time and this time was no different. Andy and I had been having a more difficult time than usual lately(mostly from the stress of his old job) and I was looking at ways to try and explain any of this to him that would make it all right. When in reality, nothing makes this all right. But I had a thought, a great thought and I couldn't wait to tell him when he got home. That night I began to try and explain why I do what I do when flaring and my words got all tangled up. The thoughts had been so clear earlier. I tried again and realized it wasn't making sense so I said never mind and he said he understood even though I knew he didn't. How could he when even I didn't.

A Tough Vacation!

Well we are home from vacation. I am still trying to figure out whether it was a good vacation or bad. No seriously, it was an absolutely wonderful vacation, but we certainly had our share of problems. We are trying to look at it as we are grateful we never had these problems before.

We were about 3 hours on the road when we got a signal that we had a flat tire. Andy spent about 30 minutes trying to get the equipment out from the back underneath the dogs of course before giving up and having me call AAA. We were out in the boonies and it took awhile for him to get there. Tire change went easy, but our spare was a little low so he had an air compressor and set about getting air in our tire. Literally 45 minutes later we were finally ready after me sticking my head out the window about 50 times asking how much longer and being told 5 minutes more each of those 50 times.

Ahhh, on the road again ready to make up some time only to have one of our dogs have explosive diahrrea in the back not 10 minutes back on the road. We lost one quilt in the process, I really feel sorry if someone tries to rescue that quilt. We had to throw it on the side of the road because the next exit from where we had the flat tire had not one single building in site. So we loaded her up on Immodium and tenatively got on the road. The rest of the day was filled with stops to clean either diahrrea or pukes as apparantly, Immodium upset her tummy. This was broke up with intense thunder storms that made walking the dogs almost impossible.

Three hours behind schedule we pressed on to the hotel we had reservations at. I am so glad we did because if not we would have missed Beckley Virginia's hot spot. We drive up to the only hotel at the exit, where a rip roaring noise was coming from the bar. After waiting almost 20 minutes to check in because there was only 1 person on the desk, we find that aren't we lucky, we only have to walk a short distance because our room is on the first floor right near the bar. I politely ask when the bar closes as it is already almost 2am and am told that it depends on when the bar stops making money.

We get to our room and after looking around decided to not take my shoes off, ever. I asked where the laundry room was as I had many blankets to wash after our adventurous first day. I was told it was in the basement, wonderful. Visions of every horror movie I ever watched flashed across my mind. Fortunately my night(or I should say morning) in the basement was uneventful.

The second day on the road was thankfully short with no major issues. Andy kicked butt getting the cottage ready for me then flew home on Monday for two weeks before he flew back for his vacation. I pick him up at the airport and then we stop at Walmart for the big two week food shopping expidition. I had already driven four hours that day and after 2 hours at Walmart(yes, I know, shoot me please) I was exhausted. I should have listened to my husband when he told me to get in the car and rest but we had 3 shopping carts to load up and I wanted to help. Unfortunately my hubby parked on a curb and with both my hands full down I went. I went down so hard I was seeing stars and I didn't hit my head. My right knee buckled and my left ankle got twisted under me and then I went straight down on my knee cap. How I didn't break my ankle is beyond me. I sat there stunned as my husband yelled I couldn't just lay there! Long story short, everything was either twisted, bruised or road rash. my ankle is still swollen but there is no pain.

Thinking this had to be the end of our bad luck we tried to start our vacation and have fun. Lets put the jet ski's in. Since we do not have 4 wheel drive getting up the hill is a challenge. We got stuck last year and had to get help but figured out if I sat in the back and Andy hugged the right we could get up. So that was our plan although Andy hugged a little too much to the right and all of a sudden after a big boom and things flying I see the trailer tip up in the air and then a big thud as it went down and we were again stuck half way up but this time we added a nice big dent in the trailer and the light is in about 1000 pieces. Oh he hit a nice big tree stump.

Now, there is no way possible anything else could go wrong, we obviously didn't say that not wanting to jinx anything. We do a lot of cooking at Rockmere and I was making chicken salad and as I was boiling the chicken the flame went out on the burner. I walked into the kitchen to a horrible smell of gas. Thank God the windows and doors were already opened and I didn't blow myself to kingdom come!

After some days of no excitement we thought we'd finally take the dogs down to the river to play. They love it and we used to take them everytime we went down but with Daisha were not 100% sure she wouldn't run away so we don't do it as often. We lug down all the stuff for a nice afternoon on the river and the dogs are chasing each other having a wonderful time. 2 Minutes down there and all of a sudden Daisha starts crying and crawling to me. I rush to her thinking she broke her leg. Andy see that she cut her front leg badly, you could see all the way down. I hold it to stop the bleeding while he runs up to get something to wrap it in. We wrap it then rush up the hill to try and call a vet to get her in. Of course it's a Sunday so it will be an emergency visit. I grab the phone book only to find it's from 1996. We call some friends and play phone tag back and forth as we don't get cell phone coverage at the cottage. Finally we get a vet on the line and drive the 45 minutes to the vet. She had to be sedated and got a bunch of stitches.

This was it for me. I had hung in there with all the other stuff, but I was now done. We had another 5 days left but I was ready to come home. We prayed our trip home would be uneventful and praise God it was except that Chrissy started peeing blood which was from an infection and I had the antibiotics on hand. So we started those immediately and had to stop a little more than usual but no other problems.

So now I am feeling blue I guess. I don't know if it's because of the stress of the trip or after vacation blues. I am tired but after dealing with all that, tired is relative. I don't like feeling this way and I don't often. I hope it passes quickly. Andy is having to work long hours to catch up so maybe I am just feeling lonely after spending all day together. Whatever it is it will pass.

Take Care

Mel

I'm Sick I'm Well, I'm Sick I'm Well

I swear one of the most difficult things about this disease is the flux of how you feel. At the beginning the changes we're not noticeable because the disease was progressing. But now that is has remained stagnate for the last number of years I have been able to feel the fluctuations more intensely. At first what I noticed was simply good days and bad days. I was hesitant to make any broad declarations such as I feel all better or I think I'm dying. I just road it out keeping a vague record of it in my mind. As I began to emerge from the overwhelming number of symptoms and began to be able to notice more things around me, I paid more attention to how I was feeling overall.

As I had longer periods of feeling well, I began to plan for the future. Maybe I could go back to school, or take some classes. I would get so excited, feel some of that old motivation. Yet when the next flare came, it came on all the harder because it was like being knocked back into reality. Remember, this is why you are on disability. For some reason when I was feeling better I began to think maybe if I just had the right mind set that I could fight through these flares. I was forgetting that there wasn't anything wrong with me in any other capacity other than physical. If I became miraculously well, I would go right back to who I was before I got sick. I would do and enjoy the things I used to because I had the ability to do them. Not doing those things is because I am sick, not because I either can't motivate myself to do them or because I am lazy or any of those other reasons. So with each new flare there is another coming to grips with having a chronic illness, realizing physically I have no control over it.

The ups and downs of all the emotions were exhausting and frustrating.it was like Chrissy teasing us with her ball. Dangling the toy of feeling better just out of your grasp and just when you almost have it, snatches it away. I seriously wondered if it would be easier to be sick all the time rather than having the ups and downs of feeling good for awhile then back to feeling sick again. The ironic thing is this could happen over an over in the same day. No rhyme or reason.

As frustrating as it is, I will take a moment of feeling better if that is all I am given because in that moment hope is reborn.

A New Year

Happy New Year! 2010 who would believe it? It was just yesterday we were all worried about Y2K. And boy, this new year is ringing in with cold. Even in Florida, the cold is taking it's toll. I am afraid we are going to lose our trees again. What is with all these freezes down here? I don't remember a single one our first 10 years here. Now we have had 3 consecutive years of below freezing temperatures which has wiped out many a tree and plant.

The cold also wrecks havoc on my pain. As much as I would love to spend the holidays up North someday, it may not be a possibility with the way my pain spikes as the temperature drops. My hands have been increasingly painful and the joints have been more swollen than usual. I hate to think it but I may be beginning to show the signs of Rheumatoid Arthritis. My docs keep testing for it and it's hard to decide which disease is causing the problem but typically Sarc does not cause joint mutilation. It's amazing how much pain one small area can cause. The other day I was literally bent over in pain from my 2 knuckles on my right hand. Bone pain is like no other pain I have ever experienced. It's a deep, throbbing ache that makes you stop whatever you are doing. I've got some of those disposable hot pads that you can wrap around your hands, but they only seem to work fleetingly. Maybe the time has come to invest in an electric blanket. Although do they even sell them in Florida?