Posts

Showing posts with the label mast cell disease

A Terrible Start to 2023

The start to 2023 has been absolutely horrible and the next few months, at the very least, already promise to be just as stressful and rather miserable. Sheila's mom, known as Nan in many other blog entries here, has been struggling with Alzheimer's Disease for about four years now.  Over the past few months...  hmmm, I think it has been since summer...  she had dipped into end-stage Alzheimer's and is now in the hospital with a fractured spine and in the worst condition she has ever been in to date.   I'm not going to go into specifics here but this has been incredibly stressful for the rest of her family as one would expect.  She has been hospitalized for a couple of weeks at this point and I'd say she is just "surviving" now or "holding on"...  not "living" like we all try to do but just surviving one moment to the next. This is sort of like the body being on autopilot.  So, the past couple of months have been terribly rough for Shei

Another Round of Oncology Visits

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

Quite the Lousy Night

U sually, my health worsens while I'm awake and, more often than not, when attempting to do things.  Any activity (ie, "doing things", raises my body core temperature and that is a significant trigger for poor health) is a major trigger for me as is straying from my long list of dietary restrictions and limits.  The temperature of my environment is also a big trigger.  Being in warm environments for more than 20 minutes or so is a problem.  Anyway, my health usually worsens during my waking hours.  Sometimes, however, for whatever reason (this is the unexplained, idiopathic part of this rare illness), poor health and sometimes even dangerously poor health is triggered while I am sleeping and the middle of the night last night was one of those nights.  Since the bedroom was only about 62° through the night, I know that a warm environment was not my trigger this time.  In this case, it seems it was simply an idiopathic triggering of poor health. I was having this dream that

Another Medical Appointment

I was notified today that my Oncologist wants to discuss something with me again on Monday.  I'm not sure what she feels the need to discuss though since we just had a long discussion and exam at the hospital just yesterday.  I hope I'm not losing another specialist requiring me to search for a new one yet again. Sheila and I discussed a few possibilities...  like prompting me to go see my Primary Care doctor about my joint issues...  or seeing an Orthopedic specialist...  or maybe some additional bloodwork...  or maybe another bone marrow biopsy...  or maybe adding another medication to my long list of medications...   Naturally, I'll be wondering about this all weekend long.   UPDATE:  Nov 1st, 2021 - As I mentioned, above, I was notified that my Oncologist wanted to do a Televideo chat today, Nov 1st.  So, I called the office this morning to find out how they wanted to connect in Zoom.  The receptionist thought it was strange that I didn't get an email with a link

Another Hospital Visit Today

S heila and I had to run to the hospital unexpectedly at the last minute the other day to visit the lab in preparation of today's scheduled visit.  I figured I would be heading to the lab after my appointment that was scheduled for today but my oncologist wanted the lab tests done beforehand.  I got a phone call from Oncology requesting I head to the hospital two days earlier than planned.  Then, this morning, we headed up to UVM Oncology again for my scheduled appointment.   My usual lab results had no changes which is good news, I suppose.  The same things that have always been wrong with my lab results indicating Systemic Mastocytosis are unchanged.  The good news part of this equation is that the numbers aren't worse. My oncologist was a bit concerned about two things...  1) She seemed shocked by how low my oxygen saturation is getting at least once every week.  She was visibly surprised hearing that my O2 levels are getting down into the 80s (%) and sometimes even lower. 

Some Notes About Recent Health

O ther than writing about my badly sprained ankle, I haven't written much about my health lately so I figured I should attempt to write some stuff down.   Overall, my typical mast cell disease stuff has been 'typical'.  That means occasional anaphylaxic symptoms, breathing difficulties, dizziness, lightheadedness, and a lot of joint and bone pain.  Plus, regular gastro-intestinal problems, nausea, and too much time spent in a bathroom.   What has been worse for the past year...  far worse...  is the brain fog.  This may have been compounded by fighting off COVID-19 a year ago.  I have had brain fog throughout all my mast cell disease but it has been far, far worse in recent months.  I become non-functional for anything other than simply surviving from day to day.   While fighting off the virus last year, I also had consistent problems with vision and hearing.  My eyes were swollen and it seemed like I had a torn retina but that was probably due to the swelling in my eyes. 

Good Weather, Finally... but, Lousy Health

It has been warm the past two days and today is looking to be a beautiful, sunny, warm spring day too.  I had planned to utilize the good weather to start working on things outside where sawdust is not an issue.  This week is looking good for that and I have a bunch of small projects that need to be accomplished.  Actually, I've been waiting months to be able to pull out woodworking tools to accomplish a few things. Unfortunately, once again, my health is being a bit uncooperative.   My ankle is still healing.  Sheila and I wandered outside yesterday to take down wreaths and Christmas lights.  I stepped up on the first step of a stepladder and quickly realized my ankle was still in no condition for climbing a short stepladder.  I instantly fell off and onto unlevel snow on the ground.  This hurt both of my ankles again setting me back a couple of days.  I have no need for my cane now but getting around is still a bit painful and slow-going.  I'm taking small steps and taking th

A Miserable Couple of Days

I slept for a total of three and a half hours the other night...  I was having a dream about doing electrical work on some house but I wasn't having much success...  wires were exposed and lighting fixtures were hanging from ceilings...  nothing seemed to be working correctly...  then I started having great difficulty breathing in the dream.  I was calling out for help but it seemed as though nobody really cared that I couldn't breath and were even acting as though I wasn't even there...  maybe I was stuck in some other dimension...  at this point, I awoke and realized that I was indeed having great difficulty breathing.   I then grabbed my inhaler...  two puffs...  no improvement.  There is nothing new with that...  my inhaler rarely helps more than just slightly.  I took two more puffs about five minutes later and I finally was able to get a halfway decent breath of air after another few minutes of waiting for some improvement.   It was time at add more medications to my

Spinal Injury Reminder

Image
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

Nothing Much Getting Accomplished Lately

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

Another Overly Long Bout of Poor Health

This is just a quick blog entry to write about some recent lousy health.   Since most people assume all is well when they hear nothing about health issues, I try to remember to write about some of these issues every now and then because all is not well with my health.  This is one of those times. Thinking back, this started with some mast cell issues for a week or two after we met some friends for dinner.  Quite often, just an afternoon and early evening out on the town can severely impact my health for a few weeks.   Then I had some significant spinal issues after removing some snow from around the house and the roof.  Actually, I am still trying to recover from the spinal inflammation and pain. Now I'm dealing with an annoying cold.  Unfortunately, a cold agitates and angers my already over-active mast cells which compounds and prolongs the cold and brings on all sorts of other debilitating symptoms.  A cold also makes my breathing issues worse and I've had a lot of brea

A Miserable Saturday

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's Cancer Treatment Update

Image
A few months ago, I wrote about Sheila and I discussing whether or not to continue Sheila's cancer treatment.  The treatment was making her daily life miserable.  Worse yet, this treatment was to continue for a total of ten years.  Ten years of absolute misery didn't seem like a very wise option to choose for someone who is supposed to be recovering from her second bout of breast cancer with lymph involvement.  After some serious complications, ER visits, and a significant deterioration in her quality of life, we both decided it was time to stop treatment.  As one would expect, Sheila's oncologist wasn't too thrilled with our choice.   The oncologist recommended some further testing to determine risk factors with and without her continued treatment and we felt this would be a good idea.  In the back of our minds, even though Sheila's quality of life absolutely sucked during treatment, we always knew we would second guess this decision to abort her treatment i

Focus Back on My Own Health

I had another medical appointment yesterday for my own health issues... some bloodwork... some shots... some discussions and advice... and now being referred to some of my usual specialists and one new specialist. When I got back home from my appointment, I was looking over my notes and a little bit of paperwork they sent home with me... I have to say that it is a bit disconcerting to come home from a medical appointment with paperwork spread across your coffee table and one of the documents is for an "Advanced Directive for Health Care". That being said, I have a feeling that quite a few patients are being sent home with this paperwork today. I hope so, anyway. Then again, my health is rather poor and it is in appointments such as this when just how poor my health truly is becomes a bit more obvious.  I left this long appointment with three more appointments. My experience with scheduling specialist appointments is that these appointments won't be behind me until we

Poor Health Again Tonight

I am on a roll... or tumble... and the hill I am tumbling down seems to be much bigger than I had originally thought. My health began its roll down this hill a few weeks ago and it just continues to tumble downhill. I slept for about four hours this afternoon and felt pretty good when I awoke. I honestly thought it would be a night of good health and feeling well. Within a half hour things started to deteriorate and things deteriorated rather quickly. First was the nausea... In hindsight, I should have taken this as a sign of impending doom. To make a long story short, I didn't realize that my health had crashed into brief anaphylaxis until my body responded naturally. I had missed all the signs. My body responding naturally to anaphylaxis is a good thing though! It isn't something I like to or should test but it is a good thing! Sometimes, either I am not thinking clearly enough to catch these signs... or, I am feeling so well that impending doom with my health seems so

A Quick Artistic Project

Image
I don't really get much accomplished when my health is lousy and, for the past few weeks, my health has been pretty lousy. I don't even remember when I last immersed myself into an art project. I've been fighting off a cold for at least two weeks now. A cold isn't a big deal for most people but, for me, a cold only compounds my problems with my mast cell disease. The cold ends up knocking me for a loop and it seems to take forever to shake it. My body already has too many mast cells and too many overactive mast cells. When we add a cold to this environment, my mast cells are even more overactive wreaking havoc on all fronts. To make matters worse, I really wore myself down over the past few months. I knew this would be a recovery period for me but my mast cells are a bit angry right now as well. Angry mast cells make for prolonged cold symptoms, bone pain, joint pain, fatigue, intermittent anaphylaxis, and a bit of nausea. This makes for some very long but very bori

Foggy Grogginess

Image
Whenever my health fails with mast cell issues, a whole slew of extra medications and emergency medications are needed on top of the immense assortment of everyday medications I must consume daily in order to stay here among the living. These emergency medications, however, bring on a grogginess and foggy state which is difficult to effectively and accurately describe. I feel like I am walking around in a different dimension than the rest of the population on our tiny rock in our vast, ever-expanding universe. I feel like this dimension is cold, damp, rather dark... like an underground tunnel... except at this stage of recovery, there is no brilliant light shining at the end of this tunnel... just shadows... silence... almost like a vacuum void of all things we understand as life. As can be expected, my brain  is significantly impacted  with an imposed suppression of cognitive ability due to the grogginess brought on by these drugs (albeit life-saving drugs, for me). My mind bou

As Expected, My Health Deteriorated Last Night

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