Scattered Thoughts . . .

As one would expect, my pain level definitely affects my mood. As my pain increases, my mood worsens exponentially.   Over the past few days I have experienced increasing pain every hour of every day. The pain just seems to get worse as the day wears on and does not subside after sleep. I slept for a solid 11 hours last night and awoke feeling worse than I have all week.  So, you may be wondering... Where is my pain? Quite simply, it is everywhere. My bones hurt deep, deep within the core of each bone but particularly my longer bones. My joints hurt. Every part of my body hurts to the touch. My skin hurts.  The odd thing is that this level of pain did not register in my brain until I noticed a serious change in my demeanor and mood. The moment I noticed I was easily angered was the moment I noticed how bad my pain had gotten. You see... I am in pain all the time even on a good day. My spinal injuries always hurt...  every moment of every day. Quite often I get bone and joint pa

Every time the kids visit us, the sailboat and kayaks in the yard seem to call to them... I know the sailboat does that for me... but it has been a long, snowy winter of trying to explain to the kids that we can't play with the boats until the summer finally arrives. Well, summer is here and Lukey wanted to play on those boats the moment he arrived! It is funny watching him on the sailboat. You can see him thinking and you can't help but wonder what thoughts are running through his young, inexperienced mind about a sailboat he has never even seen in the water. He has, however, seen the sailboat skimming across the water in our home videos that we watch with the kids whenever they visit so maybe he is envisioning one of these videos.  After realizing that he can easily climb up into the sailboat and then slide down off the boat, he kept going back and forth between the kayaks and the sailboat. It was a bit breezy the other day when they were visiting so I didn't rais

As I wrote in my previous blog post, Kenzie wasn't feeling too well at my birthday celebration. Her nose was constantly running and it was obvious she had a bit of a headache. She sort of moped around all evening... she was a bit clingy... she was scowling... she had a perpetual Clint Eastwood squint in her eyes... she had no desire to join Lukey on the boats... all telltale signs she was not feeling well. When the birthday cake emerged from the house with a candle on it, Kenzie perked up, smiled and clearly was getting a bit excited. When she dove into her big piece of chocolate truffle cake, I really think she started to feel a bit better. Afterward, she was a bit smiley...  more like her usual self. She was laughing and seemed content. Gone was the Clint Eastwood squint and the scowl.   So, is chocolate truffle cake a secret cure for all that ails us?

...one little one was not feeling too well. We knew Kenzie had a cold because of her perpetual runny nose but it was painfully obvious she had a bit of a headache too. Photos always seem to reveal all. In this case, it was easy to see that Kenzie was dealing with a painfully annoying headache too. Her usual bubbly, smiley demeanor was hidden behind squinted eyes like she was Clint Eastwood staring down a dirty villain at high noon. Her little girl personality was hidden behind a seemingly permanent scowl. Upon viewing the photos from my little birthday celebration, it was obvious Kenzie had a headache and wasn't feeling herself. She had no desire to play on the boats with Lukey. She was a bit clingy and just wanted to be held. Her nose continued to run like a babbling brook all evening long. She did, however, get excited and a bit bubbly when she found her baby doll in the toy-box and subsequently carried her baby doll around most of the evening.  Unfortunately, that s

Another birthday has come and gone leaving me another year older and wiser... well, maybe not wiser but considering my health issues, being left another year older comes as good news! This year's birthday found the weather sunny and hot... and I mean HOT! The weather was brutally hot and very oppressing which, unfortunately, is not agreeable with my health. My health deteriorates very quickly and oftentimes quite severely in warm environments nevermind in oppressing, suffocating heat. Fortunately, I was thinking ahead and spent the day fighting off the effects of the heat on my health by taking extra medications (a LOT of extra medications) and a few cool showers over the course of the day to cool my body down. My health held up and I enjoyed a nice, relatively quiet birthday at home. Liza and the grandchildren joined us for dinner and cake. I had spent the afternoon preparing a few new dishes for dinner. I have no idea why I chose my birthday to put together a couple o

As I wrote in my previous blog entry, my night last night was less than stellar as a result of some pretty lousy health. It turns out that today has been no better. Actually, today has been worse than all the time spent in the bathroom in the middle of the night last night. I've had difficulty breathing. I've been very weak. My bones hurt like only a Systemic Mastocytosis patient could understand. I'm overwhelmingly exhausted. I'm nauseated. And, after lunch, my throat was inflamed and a bit swollen. Then I passed out.  When I awoke a few hours later, all the symptoms were still present so I knew it was time for my emergency medications.  I've needed epinephrine today and I also needed to take some other emergency medications to try to stabilize my mast cells. Most of these medications cause drowsiness. Compounding this drowsiness issue is the fact that this huge cellular reaction inside my body causes indescribable fatigue also.  I really hate taking these

Shortly after publishing my last post here last night, my health crashed. I had been feeling 'uncomfortable' all night long. Actually, I had been feeling uncomfortable and a little bit 'off' for the past few days so I knew something was amiss and my health would be crashing before long. What I knew was coming hit me in the wee hours of the morning last night. My stomach had been gurgling and making all sorts of noises all day long. This typically is an indication that gastro-intestinal problems are forecast. This held true last night. For those of us struggling with Systemic Mastocytosis, our mast cells indiscriminately choose an organ to attack (for lack of a better medical term... clinically speaking, "attack" is an appropriate description though). Mast cells control many bodily functions and are very important defensive cells in immunology, allergy, and infection. The problem is that my mast cells will respond/attack anywhere in my body for no known r

View of the night sky just after sunset from the deck. I think it is safe to say that we are all looking forward to heading to the lake. As I sit here typing this post, I can hear the rain falling outside my window and I can't help but hope the weather is nicer very soon. There is sailing to do... kayaks to paddle... swimming to be done... short hikes to be done... socializing with guests... a lot of photos to shoot... and simply enjoying ourselves every moment of every day. I'd prefer not to be doing all of this in the rain! Well, really, I'd prefer not to be doing any of that in the rain! Adam is graduating high school on Saturday so he is busy this week with finals and some last minute projects. I know he is looking forward to getting back out on the sailboat. I notice him eyeing the boat whenever he is in the yard. I am sure he is definitely ready to be graduating high school! So Adam is a bit antsy to get to the lake as well. I'm sure Sheila is looking

Although all the parts have been sitting around the house, shed and yard for the past year or more, I finally managed to put together a dolly for my sailboat yesterday. It has been a long time coming! If I had to do it over again, I would definitely change a few things in the design. This always happens though. I design something... build it... and then realize something is just not 'right'. I'm always trying to improve things. I suppose there is nothing wrong with that but it does get a bit tiring especially considering my health. Right now this dolly has a flat tire. When the snow eventually melted a few weeks ago, I noticed that one of the tires is flat. I had already assembled the basic frame of this dolly... the long tongue and the axle... and had mounted two 10" tires on it. All last summer I just propped the sailboat on this makeshift dolly using scrap 2x4 blocking. Unfortunately, whenever I moved the dolly around the yard (ie, for cutting the lawn), the b

The aforementioned dedication ceremony for the "Wall of Honor" at the National Museum of the US Air Force kicked off a weekend full of events for the museum's annual SpaceFest. Below is a short highlight video of this fun event showing some of the many activities of SpaceFest throughout the weekend. It looks like a really fun weekend for kids of all ages!