Scattered Thoughts . . .

M y body is having some difficulty recovering from this latest mast cell episode of anaphylaxis.  While I was napping this afternoon, my oncologist wrote to me advising to start on steroid therapy.  Apparently, I'll need that added to all my usual medications to help recover.   I'm not feeling well enough to write much of anything at the moment so I'll just leave this blog entry at...  we'll see how that goes...

I had an appointment with my oncologist this afternoon.  The appointment itself was rather uneventful which was nice but a few things were discussed that concern my doctor.   I've always struggled with overwhelming fatigue with this rare illness but the past few weeks have been significantly worse and consistently worse.  I've also had some of my usual symptoms come and go during this period.  The fatigue has been the most noteworthy though and seemed to concern my oncologist more than anything else today. I would get up in the morning and head to the bathroom, as usual.  By the time I would leave the bathroom after washing and brushing my teeth, I needed to lay down again.  I would nap but when I would awaken a few hours later, I still felt like I hadn't slept at all.  The few hours a day that I would manage to be on my feet were spent bouncing from one thing to another, unable to stay focused on any one thing.  So, not only have I been struggling with overwhelming fatigue

The other night, around the time we were heading to bed, I started having typical mast cell disease breathing difficulties again only days after another miserable night of breathing difficulties.   This is a fairly common symptom for my primary illness so, at this point, common symptoms like breathing problems alone don't raise any red flags.  If a second symptoms appears while struggling with the first, then that does raise red flags which indicates the start of a cascading of symptoms and I need to start on emergency medications but that didn't happen the other night.  I was just experiencing what I would call and felt were moderate breathing difficulties. Sheila reminded me to check my O2 saturation level...  so I did and it was at 87%.  That may seem okay and a decent number but it is actually considered very low.  They say that normal breathing is in the 98-100% range.  "Moderate" breathing difficulties are experienced in the range of ± 94%.  Once you get down t

I've often mentioned in this blog about struggling with spinal pain every day.  I mention it often because it is a significant daily pain.  Some days are better than others, however, some days I use a cane.  Some days I can't stand any longer than necessary to move from one spot to another.  Even though the pain stops me in my tracks often or even drops me to my knees, the pain has become a 'normal' every day thing so I actually do think of it as 'normal'.  I understand that and I accept that.  It isn't until I actually see some imaging of my spine that I am reminded of the severity of these injuries and these occasional reminders bring anger to the forefront. Why anger?  I get angry because the Air Force dragged their feet while I was in such intense pain that I could not sleep or think clearly.  Worse yet, they were actually a bit obstinate in acknowledging even my first line-of-duty injury nevermind acknowledging my extensive injuries flaring up in a subs

I haven't written here in quite a while because I simply have not had the energy to accomplish anything including even writing a simple blog entry.  I assume my main problem is that I am still fighting off this virus that has been coming and going since May.  January to May was miserable with a solid fever for four months, breathing difficulties, sore throat, congestion, vision problems, cognitive difficulties, and absurd levels of fatigue.  These symptoms have been coming and going in waves since the fever broke in May. I'd say my biggest complaint is the viral fatigue.  The fatigue from my mast cell illness is debilitating and what I would call "overwhelming" at times but this fatigue due to this virus is far worse.  Just standing for any amount of time is too much to do.  I don't even have the energy to simply stand long enough to stop and say just a short sentence to Sheila.  I need to sit down.  By the time I get cleaned up and brush my teeth first thing in t

What a miserable, lousy day today has been.  Sheila did a fairly quick and, thankfully, very uneventful recovery from her colonoscopy yesterday but my health crashed sometime between yesterday and today.   I spent the morning sleeping on the couch because I had absolutely no energy and I was overwhelmingly fatigued.  Then I awoke around 2pm having great difficulty breathing.  I took some extra medications, used my inhaler but neither seemed to make much of a difference.  My inhaler rarely helps and today was no exception.  Personally, I think it is because the cause of my breathing problems is not related to asthma but related to anaphylaxis.  Then again, I don't really know the specifics of what happens in the lungs with this illness or with asthma.  All I know is it becomes very difficult to breath at times and my inhaler rarely, if ever, helps my breathing.  Anyway, today, my breathing was poor and the inhaler did not help at all.   I'm just feeling lousy.  I'm havin

Sheila is recovering from her hospital visit a few days ago and we're ready to jump into more medical appointments for her. On the positive side, she is slowly recovering and feeling better. We're still waiting to see her Oncologist and her Primary Care doctor early this week to discuss these newest problems but, for now, she is feeling more stable.  My health, however, is taking a serious hit. I went out to mow the lawn after breakfast yesterday morning since it was a first day in a week that we finally had dry grass. It was beginning to get warm so I opted to forego pulling out the weed-whacker and just do a relatively quick mow. I figured I needed to minimize my time out in the sun, heat and humidity so I skipped the weed-whacking. My health does not do well in the heat and Saturday was a bit warm and quite humid. I knew the wisest thing to do would be to just run the mower over the lawn as quickly as possible without overdoing it and then get out of the heat.  About

My health has been quite lousy since January. Sheila and I seem to be passing a cold and a stomach bug back and forth between us, over and over. These types of 'common colds' always send my mast cells into a hyperactive tailspin so I'm having great difficulty focusing on anything because my thought processes are a muddled mess! I have a dozen different projects bouncing around in my head all at once. Most of these projects I actually want to accomplish... some I  need to accomplish as soon as I am feeling well enough... and all of these projects are occupying my thoughts at any given moment. If I'm not struggling with nausea and spending time in the bathroom, I'm struggling with pain and overwhelming fatigue. Sheila hasn't been much better lately. I feel as though I am spending all my time in bed, sleeping away the winter as projects keep backing up and my to-do list gets longer and longer. My spinal injuries are terribly inflamed. I assume much of t

The few months after Christmas are always rough months for my health so I always expect health issues after the ramp-up to Christmas. This year is no different except that my energy levels seem to be at an all-time low too. Leading up to Christmas and through Christmas, I pound extra medications... adrenaline is flowing... and, I'm careful about my diet and managing energy. Once Christmas Day has passed, I'm exhausted... I mean completely spent... I mean overwhelmingly fatigued... I mean that just taking a shower oftentimes will use up whatever energy I had to use for that particular day. All this fatigue is accompanied by bone and joint pain. The joint pain is easy to describe... it feels like an ice pick being stabbed into the joint... my ankles hurt, my knees hurt, my hips hurt, my spine hurts, my shoulders hurt, my elbows hurt, my wrists hurt, my fingers hurt. If I attempt to hold anything... ie, a plate while attempting to wash a few dishes... the pain in my fingers, w

This past week has been rather lousy, overall, but this weekend has been thrust down to "brutal" levels.   We (mostly I) had hoped to get to the lake house yesterday to walk the frozen lake but my health was an obstacle nor was the weather cooperating... it was quite frigid yesterday! We abandoned that plan and ran some much needed errands instead. I don't get out of the house much...  the last time I was out and about was probably before Christmas sometime so I was itching to get out someplace where I could walk. Because of the aforementioned obstacles in heading to the lake house, we opted to head to the Burlington area to do some much needed shopping.  While in Burlington, we went into 'Homeport' specifically to find an oven thermometer and we instead found a couch that we both liked the moment we saw it. We did walk out with an oven thermometer but we also had info about the couch and contact info for the salesperson who was more than helpful with all of

I often write about and harp upon the need for understanding when it comes to people struggling with chronic illness and/or life threatening illnesses. Tonight it is time for me to harp on this yet again because Sheila is hurt and I am subsequently angry and rapidly losing my patience with far too many people who don't seem to "understand". As a result of this lack of understanding, I am truly at my wits' end and we are exceptionally close to again shrinking our circle of family and friends if this very tiring behavior does not change. I, myself, have a long list of health issues and struggle with significant disabilities every day. The major difference today, however, is that I am referring to and coming to the defense of Sheila since she is very upset right now and has been very upset at the last two family events because of this rather callous behavior. It has gotten to the point where Sheila actually dreads attending any family events because so many people na

When I was writing about my health last night (my previous blog post), I knew my health was not headed in the direction I had hoped. I suspected it might be a long night... and, although it was not as miserable as it often gets, it was indeed a long night spent in the bathroom feeling rather miserable. The nausea continued to worsen as I was typing last night. My breathing didn't get worse, but it did not improve much with epinephrine sprayed into my lungs. That provided only temporary relief allowing me to get some much needed oxygen into my body by opening up my constricted lungs if only briefly each time.   Eventually my intestines started gurgling... a sure sign that I must find a bathroom quickly and that I must take some extra emergency medications as soon as possible (it is difficult to do when you are sick as a dog). The gurgling intestines definitely created a need to spend some time in the bathroom through the night last night... oh, fun times! My episode and post-e