Christmas Past

Today has been a bad day. I have cried at the slightest provocation and feel like I am wearing my raw emotions on my sleeve. I can't blame my cycle for this as I haven't had one for almost 20 years. Yes I know, I know TMI. I cried when I drove by the road that used to lead home, I cried when I drove past the vet where we just recently had to put down our boy. I cried when I got home envisioning the quiet Holiday that we would spend. I got nostalgic for Christmases past when my family was able to get together. Most of my memories of family Christmases are good because I was too young to pick up those family nuances and moved away before I was mature enough to understand it.

I couldn't wait to go to Nana and Papa's house, we lived an hour away and I remember many a year driving the morning after an ice storm and it was quite a winter wonderland. Too young to understand the risk of driving in ice! My family get together was big by my standards, small by others. All together there was about 17 of us. We would arrive to smells of cinnamon rolls and everybody gathered in the small kitchen. The men were getting their bloody marys and the women working on the food. Nana would shoo us to the living room where stacks of presents littered the room. All us kids found our piles and then looked at the others to make sure they were even and we all had the same amount of presents. we came short of counting them out. My grandmother was very good about giving us each the same amount. Once everyone was at their respective piles, the unwrapping began, youngest to oldest. We would start with Aunt Peggys garage sale finds and my father and uncle yelled garage sale, garage sale and made Aunt Peggy mad. We always left the good presents for last, the ones Nana and Papa gave us, every year. Stationary, good perfume, and jewelry from St. Barts.

Once presents were opened it was time to get dinner on the table. The women headed to the kitchen and the men to turn on the football game. Nana did not have many rules but no football on Christmas was one of them so they had to sneak to get the scores. Today that would be easy, but back then they had to turn on the TV and would eventually get caught. Table set and food ready, it was time to sit down. None of us sat at a kiddy table, my seat was always next to Nana(first grandchild thank you very much)! We would always eat way to much and then wait to burp so we had room for more!

After all the dishes were cleaned up and the extended family hit the road, it was time for the slide show. We would watch slides of us growing up, of Nana and Papa's vacations(they were blessed to go to Hawaii, Asia, take an Alaska cruise and every year they spent a month on St. Bart's). It was fun reliving the memories. Finally it was time to go and wrap up yet another family Christmas.

Thanksgiving Memory

Oh, no, no no no no no, it can not be that time for me to fix a turkey again...........can it? Oh please say it isn't so....Please. Well damn.

My first memory of Thanksgiving, we were living on Overlook Drive. I have no idea how young I was, maybe 13-15. And I had the absolute worst cramps that day. My dad was like get over it, my mom told me to lie down with a heating pad. So I went in my room, plugged the heating pad in, layed down and turned the tv on. One of the oddest things I do when I am in pain is watch very off the wall shows for me. Example there have been many an afternoon where I have watched them build the world's tallest building the Burj Dabai, dig underwater to make the chunnel and move a historical Cape Hatteras lighthouse to avoid destruction. I have watched the military channel and learned more about guns, tanks and ships than I could ever want to know, but for whatever strange reason there you have it. So come this Thanksgiving 1983-84, I was in bed with a heating pad watching an old movie. I could not tell you which one it was and except for The Wizard of OZ and The Ghost and Mrs. Muir, I did not watch old movies. But I was and had for the first time(but not the last and I remember each and every one) this feeling of utter contentment. Like all was right with the world. It's a feeling I have had less than 10 times but is memorable and I would like many more. They are special and always have a special memory attached to them.

Since it was just my folks and I that day, I was allowed to eat my dinner in bed. But since then I have always had that memory. Interestingly that it was my first Thanksgiving Day memory. Of course I remember many at my grandmothers house, it's just that they never seemed to vary.

Feeling Hopeless

Feeling out of control, not something I am familiar with. And to be honest, I do not like it in the slightest. Thank goodness it doesn't happen to often, but I have noticed it happening more frequently and always when I am in a flare, which I happen to be in now. Feeling those butterflies in the stomach, which for me feel more like a herd of wild horses, is not one of my favorite feelings. It's something I am sensitive to because my mother has anxiety and that is the last thing I want to have. For her, the smallest things cause her to be anxious. So when I was just lying around and noticed I was feeling anxious for no reason, it bothered me. Fortunately those are far and few in between but not few and far enough. Today has been a very bad day. I was up all last night and fell asleep this morning and did not wake up until about 5 this evening. I feel so out of it and out of touch. I cannot express how much I do not like this. So my plans are to stay awake tonight and tomorrow in hopes of rebooting my body. If only it worked that way.

Here it is a week away from Thanksgiving and I do not remotely feel well enough to celebrate it or Christmas coming behind it. And from someone who absolutely loved the holidays, that is in and of itself depressing. In my head I keep telling myself I can change this, just do this and you will feel better, just do that and you will be all better. And none of that is true. The good news is I can feel better without doing a single thing. The bad news is I cannot feel better doing everything in my power to feel better. So what do I do? Well fake it for starters. At least the best I can. Pray, that I can and will be able to do what I am required. Hope, that I will be able to get some enjoyment out of it and give in, because it is what it is.

Missing Out

The first thing my husband said to me when he got home was you missed another beautiful day. Ah, gee honey thanks for the reminder. Trust me, it's not like I do not realize that every single day. It's one of the problems with living in Florida, every day is beautiful, there is rarely a rainy or yucky day where you feel good about staying in bed and curling up with a good book. But oh boy when one of those rainy days comes a long, it is wonderful!

When we first moved here, before we put our pool in, out back was just a little covered area, not screened in. When I took the dogs out I was too weak to stand to I would sit in a chair and hold the one extend a lead and the other dogs roamed free. Each time I did this, as I was sitting there, I would look at the absolutely gorgeous day and tell myself all that I was missing. I had no choice, it's not like I was being lazy. I was, am sick. At times I began to wonder how many days did I have left to lose?

There are days where I am so sick I could care less what the weather is and there are days where I am well enough to know exactly what I am missing. I have been sick for 10 years, that is a lot of days.

It's That Time of Year

I have a confession to make..........I am a decorating freak. Or I should say I was. I like to think I had taste, but every room was decorated for Christmas. Growing up, the weekend after Thanksgiving was set aside for decorating, and yes it took us those 3 days to decorate. After getting married and moving away, I set up our own similar traditions for decorating. Although as the years went by, I found myself doing more and more alone. It was never quite the same in Florida, but I made every effort to make it like those Christmases of old.

That's why I find it so hard to accept yet another thing has been robbed from me by my illness. Decorating. Now the smaller Holidays no sweat. For example yesterday was Halloween. 2 years ago I found these great pumpkin's with great faces. Now we do not need to carve anymore. I lit a bunch of candles and ate with Andy, a very nice night. After we shut down from tricker treaters, I put the Halloween things away and brought out my few Thanksgiving decorations. I am going grocery shopping tomorrow and I am looking forward to buying some mums to put in the kitchen.

I have discovered that decorating for Holidays announces to everybody, but mostly to yourself, that you are still invested in life. A few of the years I was very sick, I couldn't have cared less about decorating. Just the thought exhausted me let alone knowing it was going to have to be put away. But so far this year I am looking forward to the Holidays and I am proud of myself for the steps I have already taken. For practicalities sake, I do not decorate for Christmas like I did before. I have scaled it down to the tree, some candles, a nativity set and some of my village. Outside we do some lights and I decorate the butia palm although this year it is sick so I may not be able to. But nothing can take away that anticipation that reminds me of being a kid on Christmas morning. The Holidays have begun, have fun!!!!

See Ya! Have a Great Time!

Another Saturday night alone as my husband is out having fun. No, it's not like it sounds, he is out with my blessing, if not relief. And again it's not like it sounds as I would want nothing more than to be out having fun with him. This, is one of the wonderful bonuses of my disease. The cancelling of plans made a few days ago when I was feeling great, but awoke feeling like I had been run over by a truck. Oh, and like before getting hit by the truck, I chased it for miles. Pain and fatigue, my constant companions, my 'other" man.

After many years of being frustrated that this disease had been dictating our lives, we made some decisions to try and take it back. One of those was relating to going out. the rule was that I was first choice, meaning that if I felt well enough to go out, then that's what we would do. But if I wasn't, Andy was free to make other plans so he wasn't stuck sitting at home. It's not a perfect system and we have had plenty of misunderstandings and arguments. And of course work social events must take precedent. The uncomfortable decision we made was to tell our friends that because of my illness, we are not a sure thing. So if they get another offer to go out, they are free to take it even though they have plans with us. Because there is a good chance we may have to cancel at the last minute. We tell them no hard feelings. I have no problem with this, Andy hates it. I know it is not the best of situations and only our good friends can hang in there with those conditions. For me it helps tremendously because I always felt horrible guilt when I had to cancel at the last minute. With this in place I am not thrilled to cancel, but at least the guilt is less.

I hate being alone, but I know my husband needs to socialize. My burden is the lonliness I carry and the effort to not appear put out or upset that I was left behind. Somedays I do well and others I make him pay! LOL Such is the life of a IPer!!

Time Passing

It's funny how you can look at something, someone everyday and one day you notice that they have changed. I was in the kitchen with Daisha(our youngest boxer) this afternoon and I looked down to see what she was doing and it struck me, she looked old! Her once black mask was littered with grey and her normally sparkling eyes with that piss and vinegar look in them were dull. When did this happen? Just yesterday she was that crazed one year old with no training! How is it possible that 6 years have flown by that fast. Where was I?

I have an App on my iphone that tells me how many days until Christmas, wait, let me check.....82! It can't be, wasn't it just Christmas a few months ago? Why does time seem to go faster as you get older? Or does it go faster because I am sick? All I know is that when I was working and living my life, time did not seem to go this fast! In the last 10 years, it has sped up exponentially.

I need it to slow down because I already feel 20 years older than I am. I find myself paying attention to those commercials selling walk in tubs, chair lifts and scooters. I'm like oh yeah, one of those would be great! I already take the phone in the bathroom with me when I take a bath because I heard about that poor woman who got stuck in her tub for 8 days because she couldn't get out!

What's that saying, you are only as young as you think you are!!

The Crud

Today is day 13 with the crud. I didn't think it was possible for it to last this long, ugh!! I went on antibiotics last week but they are sure taking their time. Strep throat, who'd a thunk it? I hadn't been tested for strep throat since I was in junior high school so I was a little taken aback when they said they were going to test for that and all the flus. It's amazing what they can do in the doctors office these days! Since most of my illnesses are more serious, I don't usually get the colds, flus, etc. so this was all new to me. First she hands me a kleenex, which is never a good sign and then got out one of those long q-tips. Uh-ho, that isn't going in my ear is it I asked. Oh no she said just in your nose. Oh well in that case no problem, seriously? After sticking that thing all the way up both nostrils, I now see why they give you the kleenex first. She then puts the results of the q-tip in these vials and sets them aside to process.

While the flu tests were processing, she comes back in says it's now time to test for strep. Since I have been tested before, I knew that she was going to stick one of those long q-tips down the back of my throat. She hands me another kleenex and says she needs to get really far back. I do not have a sensitive gag reflex so I wasn't worried. Make that past tense I didn't have a sensitive gag reflex. Being prepared for anything, she had one of those pink plastic puke pans in my hands before I knew. Thank God I was able to hold it in, but I kept my pink pan close at hand.

Off wnet my nurse with all the little goodies I had let her take and then very shortly the PA comes in to let me know I have strep and bronchitis and I need antibiotics. Sounds good to me, but then in she comes again and this time with a needle that I swear was for a rhino! I have never seen a needle that thick! Please tell me you are not using that needle I asked and she said no, of course not. Ah, I exhaled and relaxed until I saw the needle she planned to use which was much thinner, but it was as long as my arm!! Ready she asked? What happens if I say no? OK, I stepped down from the table, dropped my sweat pants and prayed I wouldn't see the needle come out the other side. Except for the fact that it took about 10 minutes to inject it, it wasn't so bad. She handed me my script and off I go thinking I am well on my way to feeling better.

WRONG! I have taken antibiotics all my life, many different kinds. I have never had a side effect before and wasn't expecting any. I spent close to the worst 36 hours of my life. For whatever reason I had a reaction to the meds and was miserable. I NEVER want to go through that again!! I call and let the PA know and they call me in a new antibiotic. When my husband went to pick it up, he was informed from the pharmacist that this new antibiotic interferred with one of my other meds. She had called my PA but hadn't heard back and this was at 8 at night. Great, no one called so I went a day without antibiotics. So first thing the next morning I called the PA and told them and finally got called in an antibiotic I can take. Good grief, it's not supposed to be this hard.

In all this commotion, while I am on antibiotics, I cannot take my chemo. So it's now been almost a month and I really need to be on my chemo! I do think I am finally feeling better but I still have 7 more days of the antibiotics and no chemo. I cannot even tell you how frustrating this has been. I am not one to use the it's not fair card, but Andy gets this, he still can go to work, gets the z-pack antibiotics, done in 5 days, and then is fine, minor inconvenience. Me, it's a month long drama fest. Welcome to chronic illness!