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Showing posts with the label bone pain

Oncology Update

I 'm lagging behind in keeping this blog updated which, for some reason, seems to be the norm for the past year or so.  Perhaps it is due to overwhelming fatigue.  Whatever the reason, here is an update to my recent oncology care blog entries I wrote in the past month or so. My overall health over the past year or two has been gradually worsening.  This rather lousy overall health has become my new normal so I'm kind of used to it now.  Plus, it changed so slowly that it was difficult to see.  Since I'm used to it now, I have been having difficulty in recognizing it as an everyday thing and a new normal.   The biggest concern and perhaps the most debilitating concern has been overwhelming fatigue.  On far too many days, I'm ready to head back to bed long before lunchtime and sometimes right after leaving the bathroom getting ready to start my day.  On these days, I have difficulty keeping my eyes open and I have no energy.  My brain wants to do things that interest me b

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

A Lousy Couple of Weeks

T he weather has been horrendous anyway but my health has really slowed down any sort of chance of being productive over the past week and a half or so.  I think the rainy, damp, wet weather may be playing into the amount of pain I'm in all day long so I suppose it does have some bearing on my health.   My main issue is pain...  joint pain, bone pain, spinal pain.  My sprained left ankle (since January) has worsened in this damp weather so I'm limping a bit due to that.  My right knee is still a problem even though it is better than it was a month ago.  The pain in these two joints alone is enough to keep me up through the night.  I also have nagging, relentless bone pain.  My extensive spinal injuries are always worse in periods of damp, wet weather too so my spinal pain has been worse lately as well.   The pain wears me down and causes sleep issues so then there is overwhelming fatigue added into the mix as well.  I just want to sleep.  Well...  I suppose I really want to sle

A Lousy Epinephrine-type of Day

I've been feeling rather lousy for the past week or more so it was not much of a surprise when I quickly realized this morning that today wasn't going to be much better.  For the most part, I've been extremely fatigued and inexplicably weak over the past week.  My usual bone, joint and spinal pain has been far worse as well.  I have pain all day every day but far too often this pain dips into severely debilitating levels.  This is where my health has been lately.   I've also been feeling "not right".  Sometimes I just can't put my finger on what is wrong.  All I know is I don't feel right.  I think this is usually due to multiple symptoms spiraling down into the debilitating levels but no single symptom seems to stand out.  Regardless of why I feel this way, I have been feeling this way lately.  Late this morning, I began having some difficulty breathing.  No red flags were waving in my head though because this is a common occurrence in warm environmen

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

Can't Shake The Flu

I'm still struggling to shake free from the flu.  I've been sick since just before we arrived back home from our cross country rail journey.   I still have a cough but not nearly as bad as it was in that first week. My biggest complaint, however, is dealing with the overwhelming fatigue and overall aches and pains.  Then, add in the usual fatigue, bone pain and joint pain from my primary illness and the past few weeks have been brutal.  An hour after getting out of bed in the morning, I need to lay down again.  At that point each day, I hardly have the energy to stand or hold my head up.   We'll see how long this lasts...  I'm tired of it though...

Another Dip in Health

I have already written about my health crashing due to hot, humid weather over the past week but I haven't really written about the early part of the weekend. On the positive side, I think I am finally beyond this latest bout of poor health. Time will tell. Thursday, Friday and Saturday were rather lousy. Well, actually, the whole week was rather lousy but Thursday, Friday and Saturday were quite rough with some dangerously lousy health. I was overwhelmingly exhausted. I could have fallen asleep only a moment after deciding to allow myself to fall asleep at any time during the day. I was fighting staying awake all week long. This should have been my first clue that I was teetering on the brink of anaphylaxis with very low blood pressure... I didn't realize it yet though. I was having difficulty breathing at times. I often have difficulty breathing especially when the weather is hot like it was this past week so I was not associating this symptom with the fatigue. I should

More Down Days

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I've had a few good days recently and managed to get a few things accomplished around the house but that never lasts long.  My health is often in a constant see-saw motion... sometimes a roller coaster motion... and lately, I've been struggling with a few days on the low end of these fun rides. During those few good days, I built a few new planters for our front deck and two new window boxes for the front of the house. I was on a roll and I was optimistic that some good health would continue so I could get more accomplished on the house. It was a nice thought but what the hell was I thinking?  My health was rather poor yesterday with weakness, dizziness, lightheadedness, and simply feeling rather poor. I even spent some time in the bathroom sick as a dog. It wasn't until later in the day that I realized that what was really bothering me the most was bone pain.  This bone pain is brutal. It is pain all through my body. Everything hurts but especially my long bones. The

January is a Brutal Month

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

Bone Pain, Lymph Nodes and Nausea

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

A Miserable Couple of Days

I've been down for the count the past couple of days. My health has taken a serious nosedive which affects everything  in my life.  I'm experiencing difficulty breathing... my bones are aching (mostly long bones... ie, legs)... my joints are extremely painful (mostly my hips, knees, ankles and my spine)... I'm having cognitive difficulties... and the fatigue is completely overwhelming. Oh...  and I simply feel lousy at times, even miserable the rest of the time.  I've thrown a bunch of extra medications at this problem in the hope of stabilizing my body again as quickly as possible. We'll see how that pans out... I'm hoping to stabilize my health today so I can get back to 'Christmas stuff' tomorrow... 

Another Miserable Day

My health is on a roll again... absolutely miserable, poor, lousy, and exceptionally painful health which has been far too consistent lately. I couldn't sleep again last night... I have a million things I must get done and I can't do any of them right now.  Funny...  I had thought I was already in a lousy mood yesterday... compared to my mood today, my mood yesterday was quite pleasant.  It will be another long, brutal day today.  Maybe I'll look for some other photos from that 2013 trip to Manhattan...

A Crappy, Lousy Day

What a crappy, lousy, miserable day due to intense spinal pain, inflammation, bone pain and some resulting Systemic Mastocytosis issues... that is about all I can say.

Persistent Poor Health

Last week, for the most part, I experienced a lot of lousy health which interfered with getting anything accomplished on the house. We're pretty antsy to get this other bedroom finished but my health is making that seem like an insurmountable task. I don't even remember what the health problems were last week... some combination of typical Systemic Mastocytosis symptoms... but I spent most of the week sleeping. I felt halfway decent on Saturday but only managed to accomplish about an hour of work before the overwhelming fatigue took over and rendered me useless.  On Sunday, I felt great! It was Sheila's last day of a usual short weekend and it was Mother's Day too so I decided to use my new energy by spending time with Sheila rather than working on the house. I figured I could put this time aside for Sheila and then work on the house the following day.... Wrong again. My health crashed again. At some point this week, I did manage to squeeze in an hour or two of

More Systemic Mastocytosis... Stuff

I've had Systemic Mastocytosis episodes ranging in severity from 1 to 10 over the past decade and a half. Some episodes are worse than others but they are all quite debilitating.  Some episodes last for weeks, some for days, and, on the rare occasion, only hours. The symptoms of these episodes are varied but always include physically, mentally and emotionally debilitating symptoms, a lot of pain, and even life threatening symptoms. Last night, however, I experienced a type of episode which was new for me. Many other patients experience this type of episode often but it was a first for me. I don't think this means much since each patient presents this illness differently. Last night, my breathing became difficult rather suddenly and then I quickly noticed that swallowing was difficult. I definitely knew this was not a good thing! Within about a minute, I realized that my throat was swelling and closing.  I quickly grabbed my bag of medications as well as my emergency medic

A Dizzying Day of Nausea

Today was one of those rather lousy days. It wasn't "miserable" nor "grueling" but it was quite lousy. Systemic Mastocytosis causes all sort of transient symptoms, problems, difficulties and obstacles. One day can be vastly different from another. One moment can be vastly different from the next! Today, however, was fairly consistent... quite lousy. This all started late last night with some flushing. Sheila had noticed a splotchy, deep red rash on my face and neck. I felt "okay" at the time so I just let this first sign of impending trouble just slip by with no countermeasures. By the time I laid down in bed last night, I was experiencing palpitations and mild tachycardia (120-130 bpm). This is a sign that my blood pressure was dropping too low... my body would respond naturally by jumping into overdrive to counter the loss in blood pressure (which is a very good thing)... then my blood pressure would drop again... body would respond.... etc. Co

A Lingering 'Cold'... Quite an Understatement

For most people, a cold is an annoyance... an inconvenience... a nagging little problem of needing tissues nearby and having some over-the-counter cold medications. For those struggling with other illnesses, like my own illness, a cold can be brutal. My illness, Systemic Mastocytosis, causes overactive mast cells, all day, every day... an abundance of mast cells... and, since mast cells are at the center of immunology, this means I have an over-active immune system.  Because of these overactive mast cells attacking all sorts of things within my body which it should not, I often have symptoms of a typical cold even on a good day. I have too much histamine in my body. I have too much of every mediator produced by mast cells which causes all sorts of problems including some life threatening problems.  Now... add a virus or a cold to this already unhealthy body...  During a typical cold, my mast cells get even more over-active... moving into hyper-activity. This causes some absolut

Small Accomplishments This Weekend, but...

...consequences in the form of exhaustion, bone pain, joint pain and spinal pain. Slowly, but surely, I seem to get things accomplished around the house since developing Systemic Mastocytosis but it is difficult for me and exhausting.. This illness wears me down all the time which requires a lot of extra rest and sleep. I do, however, manage to accomplish little things on my relatively good days. The frustrating thing is that after a period of lousy health, I end up with a long list of basic things which need to be accomplished such as laundry, straightening up the house, cutting the lawn...  all of which are enough to wear me out for a few days. So, when I find myself in this hole, it is extremely difficult to get out which can become exceedingly frustrating. I'm left feeling as though I am just desperately treading water and accomplishing nothing. That being said, this weekend was one of those relatively good times when I had health well enough to make some headway on some

Unbearable Bone Pain

Today has been a miserable day in the heat and humidity for my breathing and health in general. One of the things I hadn't mentioned earlier today, however, was that I am experiencing unbearable bone pain today. This bone pain is so intense that I am having difficulty sleeping even though I am completely exhausted. I couldn't nap today and that will definitely affect my health in a negative way. I'm hoping that I can sleep tonight.  My bone and joint pain has been getting progressively worse in the past couple of months. I don't know what is causing this worsening in these two symptoms... perhaps the warmer summer months are having a more serious affect on my Systemic Mastocytosis symptoms... or, perhaps this just happens over time as the illness affects more and more of the body. I don't know.   What I do know is the pain is unbearable right now and has been all day.

A Miserable Day... or, Few Days...

My health has been pretty lousy for the past few days but, today, it declined to the lowest of lows.  I awoke exhausted this morning and that is never a good sign of a "good" day. Of course, as I've mentioned many times before, a "good" day for me with my illnesses and spinal injuries is nothing even close to a healthy person's good day. For me, a "good" day means tolerable health... just minimal to average pain... but having enough energy to accomplish something. The past few days have been less than "good". So, I awoke exhausted... that should have been a clear sign of the day that was ahead of me. I didn't see this sign, however, and just tried to muddle through my fatigue. By the time lunchtime arrived, I realized that I wasn't just exhausted... my thoughts were muddled... and my mood was less than socially acceptable. This was the second sign that my health needed attention and, again, I didn't pay much att