Scattered Thoughts . . .

I'm slowly but steadily recovering from my bone marrow biopsy.  It seems like the biopsy was the day before yesterday but today is the fourth day of recovery.  I've done a lot of sleeping when the pain would allow for some sleep.   I slept about 13 hours last night so that was good.  I awoke at around 5:30am but, contrary to the past few mornings, I was able to go back to sleep with no difficulty.  We got up at around 9am and Sheila did some yoga and then I made a fairly big breakfast.  So, I suppose I'm feeling well enough to do some cooking. Breakfast was good! I still have quite a bit of pain whenever I attempt to do anything.  Bending especially is painful...  sitting back against anything that puts some pressure on the site of the biopsy is even more painful...  and laying on my right side is better than it has been but at least it is possible now for short periods...  so things are improving.   At rest when nothing i...

I had no problems falling asleep last night.  I was dozing off by 8pm.  I awoke at 4:30am this morning when I tried to roll over onto my right side.  I was quickly reminded that the bone marrow biopsy was on my right side though so that woke me up suddenly.   I read in bed for a bit and then got up out of bed with Sheila when she got up for work at just before 6am.  However, I was unable to keep my eyes open by 8am and slept on the couch until just before noon (on my left side, of course).   I didn't even eat anything for breakfast because I was too exhausted to make anything.  I was originally planning to make some bacon and French toast because I was starving.  Due to a serious lack of energy, I changed my breakfast plan to just having a bagel with cream cheese.  I still didn't have the energy to make even that.  Instead, I grabbed a couple pillows from the bedroom and laid down on the couch.  I was asleep the moment my ...

Yesterday, for the most part, was a better day, healthwise, than I've had in a long while.  I still did have problems at one point last night but, overall, it was my best health day since before my hospital visit.   I had another relatively short and mild episode of breathing difficulty last night.  I was cooking dinner and had some breathing issues.  I definitely can't take the heat in the kitchen!  I do need to prepare meals though so I try to minimize my health problems by leaving the kitchen while I'm cooking.  I return a couple of minutes later to check on the meal, then leave again to the living room where it is cooler.  Regardless, I still ended up having some breathing issues last night...  again. I took some extra medications again before heading the bed and I think that helped.  I didn't have any breathing problems after that.  Another plus was that the medication I took makes me drowsy so I ended up sleeping through the ...

My night through the night was quite lousy last night.  We went to bed at around 10pm but I was not sleepy just yet which, I assume, was due to all the steroids in my body at this point.  Sheila fell asleep quickly but I stayed up and read for a while. I was still needing to get up to use the bathroom every hour too.  I think this was due to all the extra antihistamines I have been taking daily for the past week as well as because of all the extra water I had been drinking throughout the day.  These short bathroom trips were clearly cutting into my sleep too. Then, at 2am, I had some minor difficulties breathing.  It resolved itself within about ten minutes but that was a sign that I clearly am still seesawing back toward anaphylaxis.  It is happening much less frequently now and the severity is much less now too but that seesawing is still occurring it seems.   It is sort of like a swinging pendulum...   Early on, this pendulum was swin...

I have one of those illnesses that is actually quite consistent.  The symptoms are transient through time, space and frequency but the illness itself is quite consistent.  In order to get a few good days, I must pay the price with a few bad days.  Unfortunately, it is not an even trade-off...  I pay the price of a few good days by having to endure many, many days of bad days.  I'm in that low part of the trade-off cycle now.   On the last two days of our cross country train journey (Monday and Tuesday), I had an annoying sore throat.  I've had worse sore throats but it was consistent and wouldn't go away.  I was hoping that I was just a bit dehydrated since I was avoiding an excess of fluids due to availability of bathrooms.  Unfortunately, I would quickly realize that the sore throat was not due to slight dehydration.  Although dehydration can bring on other problems, that would have been a more simple problem to resolve......

Sue's ICU room reflected in the windows overlooking Lake Champlain and the Adirondack Mountains. It has been a couple of days of serious reflection and I even captured a photo of this in a literal sense. We just can't seem to break away from the hospital! We certainly are on a consistent roll between me, Sheila and now Sheila's mom, Sue. The past couple of days have been spent at the hospital with Sue and we expect to do the same through the long weekend ahead.  Sue certainly has had a rough couple of days and she really had all of us worried yesterday! (And there are a lot of "us" in Sue's life!) The next few weeks promise to be quite rough for her as she continues to slowly heal. On the positive side, Sue is now stable and, hopefully, steadily healing.  Sue slipped on the ice right outside their garage yesterday morning... slammed to the ground... left with visible bruising, a bloodied head and a relatively small bleed on the brain. She doesn...

After showering this morning, I came back to the bedroom to find Sheila propped up in bed and reading.  Considering the circumstances, it seems she is feeling quite well but not well enough to be frustrated by the inactivity. I'm not sure boredom has stepped in yet either because she is probably still catching up on much needed rest and sleep.  What I have noticed and understand all too well is her careful search and selection of different positions in order to find some comfort and less pain. Right now she is taking her first shower since before the surgery so I expect her pain to increase after this little bit of activity and pressure. Any movement, so far, has been quite painful and she is still moving quite slowly. As I mentioned in previous blog entries, the area where the surgeon removed a few lymph nodes hurts the most and this still holds true this morning.  All in all, however, I think she is doing quite well considering the past week and a half... and...

Before a patient can be discharged from Post-Op Recovery, the patient must be able to effectively void their bladder on their own. Of course, they should also be able to get themselves to the bathroom without falling over to the floor and their vitals should be in a safe, healthy range. If everything checks out okay, then the patient can be discharged and sent home to continue recovery. One of the problems Sheila has had consistently in her previous two surgeries was bladder paralysis due to general anesthesia. Her team of doctors worked together to come up with a solution so Sheila would not again experience this excruciating problem again this time around. Both Sheila and I are very happy to report that her team of doctors succeeded in solving this problem this time around! When Sheila was able to effectively void her bladder on her own by mid-afternoon, we began our journey of checking out of Recovery and the hospital. Here, Whitney is wheeling Sheila out of Post-Op Recovery... ...

After the holidays and including our annual trek to the largest train show in the US every January, my health is always in need of a few months of recovery. My health crashes to crazy lows and it requires months...  yes, months... of recovery. This is what can be expected whenever I push through a couple of months and, in the process, wear my body down far lower than it should ever be pushed.  We are at the end of March now and I'm still struggling with exceptionally poor health. My days consist of personal hygiene (which alone is oftentimes enough to sap me of whatever little energy I have and to knock me down for the day) and cooking meals for myself. That is about all my health can handle each day during these monotonous periods of lousy health.  On relatively "better" days (just one step above 'lousy'), I do get some physical therapy accomplished first thing in the morning. My spine still needs daily physical therapy. I seem to be able to add this into my ...

Today is one of those boring days of rest and recovery. On days such as this one, I must be extra careful to not tax my body and health... I must get extra rest... if not, my health will fail again quickly. I was having great difficulty with my vision all week but I didn't think much about it since it is a relatively common problem for me. Vision problems come and go regularly. I purposely try not to think about it because losing my vision or hearing can really get me a bit anxious. As the week progressed, e ventually, some other symptoms started to appear.  Yesterday evening, my health crashed. I spent some time in the bathroom... sick... I was so dizzy that I almost fell over while sitting in the bathroom! Needless to say, I needed emergency medications.  I'm feeling a bit more stable today but rather drowsy from all the emergency medications and extra medications. Regardless of last night's problems, I had planned to take it easy today anyway since we have a Christ...

We are back home from the lake house now.  Although it was a great week on Lake Groton and I prepared for this week for months by being vigilant with my daily physical therapy (a daily ritual since my second line-of-duty spinal injury in 1998), it has really taken a lot out of me. My spine is inflamed from dragging around kayaks and the sailboat.  Packing bags into the car didn't help either!  As bad as the spinal pain is, problems associated with my Systemic Mastocytosis are far worse and much more debilitating. Wearing myself down is one of the worst things I can do to my health today and has the same effect on all Systemic Mastocytosis patients.  The absolute worst thing we can do is to miss a dose of medications.  Wearing oneself down takes a close second though and requires the longest amount of time to recover. It just so happens that I did miss a dose of medications on our first night at the lake.  Our daily lifestyle changed so much at the lak...

I'm still recovering from the excruciating kidney pain I had all last week and through the weekend but I am up and about and accomplishing small things around the house.  Although we still do not know for sure the cause of this intense pain, it is good that the pain is waning and I am able to accomplish a few little things again. What I am now struggling with, however, is unbearably hot weather so early in the year.  I had to retreat to inside the house by 11:00 am because the heat was so oppressing.  When I retreated to the protection of our home, our little weather station was showing the temperature to be 93 degrees.  By the time I had finished lunch, I was wishing we had the air conditioning units installed in our windows. My health does just fine when the climate is in the 70s.   When it is in the 80s, I need to take a lot of breaks to cool off.  One of the quickest and effective ways to cool down my body is running cold tap water over the blood ve...

I had an incredibly fun...  an amazingly beautiful... an uncharacteristically busy...  and a thoroughly entertaining weekend.  Sheila and I spent the entire weekend together and had a very busy schedule of fun activities.  As all patients struggling with Systemic Mastocytosis know all too well, getting to spend quality time together and sharing 'good health' is a blessing...  a rare blessing! We went out to a few restaurants in Waterbury on Friday and got to spend some time with some local friends in town.  Then on Saturday, after a nice breakfast at home, we headed up to Burlington on Lake Champlain to do some shopping for sailboat parts and supplies.  I was feeling relatively good and the weather was beautiful so we decided to make a day of it up in Burlington! We had planned to meet some friends, Frank and Christine, up in Burlington sometime after we finished our shopping.  Turns out we both pulled into the parking lot at the same time. ...

After having a few rather lousy days, I am finally having a fairly productive morning for a change.  I have already been outside for an hour or more working in the yard. Last night was quite miserable...  some gastrointestinal problems, weak, dizzy and vision so blurry that I could not see a thing...  no reading...   no computers or media...  even watching television was difficult. I suppose I could have just sat around with headphones listening to music but, I must admit, although I am a musician, I quickly get bored with that.  It's sort of a "been there, done that" kind of thing.  Maybe it is just boredom...   after doing absolutely nothing for days (and the better part of this year so far), I need more to satisfy me...  I need "information"...  I need "learning"...  I need stimulation. Many musicians would say that music is  stimulation...  many musicians would say that playing music relaxes them... etc.  O...

It doesn't happen often but, every now and then I awake in the middle of an episode of anaphylaxis.  Sometimes the episode can be rather violent.  Sometimes it is relatively mild.  Regardless, it always leaves me exhausted, weak, shakey and in a bit of pain.  This is no way to awake in the morning! These episodes can happen anytime but usually occur while I'm awake.  While awake, I usually have some warning signs that anaphylaxis is approaching so I often have a fighting chance at minimizing its effects with emergency medications.  My warning signs often include feeling lightheaded, difficulty breathing and my legs become exceptionally weak.  These symptoms are the result of my blood pressure crashing. Typically, if I feel these symptoms coming on, I will pull out my epinephrine and some other medications reserved for emergencies.  When this happens, I know I must quickly find a place to get off my feet before I end up being a heap on the floo...

I have had a few friends ask questions about my health recently. These questions were not specific technical questions indicating a familiarity with this illness but were very general questions about my illness indicating that some explanations and information might be useful to my family and friends. I felt the answer would be to post a link to a website as well as a link to a YouTube video, but unfortunately, I could not find any concise material to link so I decided to write about my personal experiences and struggles with my chronic illness here. My chronic illness actually consists of two versions of Mast Cell Disease and multiple spinal injuries, exasperated with occasional bouts with cancer. A little more than ten years ago I developed Systemic Mastocytosis which involves numerous internal organs. A few years later I developed another version of this illness which involves the skin called Cutaneous Mastocytosis to add to my systemic illness. Mast Cell Disease is cla...