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Showing posts with the label systemic mastocytosis

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

Health Isn't Recovering Much

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

Yesterday Was A Lousy Day

Oh boy was yesterday a lousy day!  Earlier in the morning, I was feeling quite well. I was looking forward to some exercise and my daily physical therapy. I never got that far though... First, around lunchtime, I began to feel something wasn't right. I couldn't put my finger on the problem but I knew some lousy health to some degree was approaching. I ate lunch and then it started... As I was trying to walk my dishes to the sink, my legs would not cooperate. At first, I wondered if they had just started to fall asleep... and hoped it wasn't a mastocytosis issue... or, was this a result of my spinal injuries? My legs not cooperating to such a debilitating level was a bad sign though... my legs really were not cooperating at all...  I could barely move them. I made my way back to the couch. My bones and joints had been hurting since around Christmastime so that was nothing new and they were still hurting but the hurt was pushed to the background as some new symptoms e

A Really Miserable Week

In my previous blog entry, I mentioned that I've been experiencing more than a week of quite miserable health. Since I sort of use my blog as a journal for some of the more significant health issues, I suppose I should write about this here. At first, I thought maybe I was experiencing food poisoning... but, sometime in the middle of this holiday weekend, Sheila began to get, stomach cramps and diarrhea too. Now I'm thinking I've been trying to shake a virus... and history has proven that due to my health issues, I sometimes need a few months to shake something like this... or, sometimes I can shake it in a week or two. Time will tell. I was in and out of the bathroom for more than a week... about eight solid days of sickening diarrhea. This isn't "typical" diarrhea of a relatively healthy person who ate something nasty. This was more like the typical diarrhea of people struggling with Systemic Mastocytosis and/or various carcinoid tumors. I'm going to

It May Be Time For A Wheelchair

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Late last night, my spine suddenly was on fire... I had difficulty getting up out of my chair... I had difficulty sleeping... rolling over was excruciating. Today is even worse. The pain has been absolutely brutal.  The pain is a searing, burning pain in the lower half of my spine... radiating to my hips, around my kidneys and through my groin... whenever I try to put any weight on my legs, my legs experience tremors and the pain instantly jumps to a big fat 10 on the 10 point pain scale.  There are times when I almost ended up on the floor because I could not stand on my feet without actually seeing stars due to the intense pain. Reaching out for the couch, the bed, a chair and the kitchen table helped me keep from being a heap on the floor. This has been an exceptionally bad day. Most times, despite my extensive spinal injuries, I get around just fine (with pain, but I get around just fine) but there are times when my spinal injuries are excruciatingly painful. During these pai

Pet Early Warning System

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I've mentioned many times before that pets often help me out with my health.  They seem to have this ability to sense energy levels... or lack of energy levels.  Whenever my health is about to crash, these neighborhood pets tend to come toward me and start nudging me with whimpers and meows... looking at me... nudging me... following me wherever I go.  When I see this type of behavior, I am quick to grab my emergency medication and start sorting out a new game plan with my medications because history has proven that these cats and dogs are exceptionally accurate at knowing about my health and warning me as though they are an early warning system. As I mentioned above, I believe it is our energy levels that they are sensitive to and to which they respond. These pets come and go over time (as our neighbors come and go) but I always seem to have at least one resident pet at any time who looks out for me. Lately it has been this blue-eyed, long-haired cat who keeps close tabs on

Hell Week of Health

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A week ago, I had written about having screwed up my prescription refills. One of my medications... one which is a mast cell stabilizer and an H1 blocker...  and one which is not yet FDA-approved... had fallen through the cracks of my record-keeping and memory which means I forgot to order a refill before I had run out of this medication.  For most prescriptions, people can just run to the local pharmacy to pick up a last minute prescription. I actually do this with any acute problems I am having. I bite the bullet (taking a serious hit in cost) and I buy the prescription locally so that I can start on the medication immediately.  Unfortunately, most of my medications are absurdly expensive and going to our local retail pharmacy is not financially possible for me. For instance, one of my medications, by itself, costs upwards of $40,000 annually. If I bought this medication locally rather than through my insurance plan's mail order program there would be two problems... 1. The c

Forgetting to Order Medications

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Once or twice each year, I totally screw-up my medications by forgetting to order a prescription. As I was sorting out medications for our upcoming weekend excursion, I realized that I screwed up again.  One of my medications was almost empty when I pulled out the capsules needed for the weekend. This is not good.  This particular medication is a combination of mast cell stabilizer and an H1 blocker. It is actually something I need to get compounded by a pharmacist in Washington state because it is not an FDA-approved medication... nor is it covered by insurance... so I have it made just for me. I immediately called my doctor's office to inform them that I screwed up and I need them to call out to the pharmacist to order a new prescription. I probably won't see this new prescription for almost two weeks which means I will be without this particular medication for 7-10 days before the new prescription arrives.  This also means that the quality of my health will plumme

Uggg

I had thought it was a pretty lousy night last night with all that nausea... tonight has been far worse being sick as a dog in the bathroom. I had some sudden anaphylactic-type symptoms as well as nausea and stomach cramps... then all the even worse miserable symptoms hit and I spent far too much time and energy being sick. I've now taken my nighttime medications, extra medications and emergency medications... and, right now, I feel rather poorly which is a significant improvement from my time in the bathroom... but, I feel as though I'll probably be back in the bathroom before long... I'd just like to sleep peacefully.... UPDATE:  It is the following morning and my biggest issue this morning is that I am worn out, generally feeling lousy and I am groggy from the emergency medications. Oh... and these emergency medications make me very hungry!  

Health Update

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Plain and simple, this past week has been brutal. Whenever we have a busy weekend of activities, it affects my health for the next week... or month. Last weekend was exceptionally busy from Friday through Sunday. We had squeezed in about three activities and three different places each day... I skipped my daily two hour naps... I was on my feet throughout most of the weekend... and we were on the go all the time. This is a recipe for a long bout of miserable health in my foreseeable future. In preparation of the long, busy weekend, I rested up in the days leading up to the weekend (longer naps each day and did virtually nothing each day in an effort to preserve energy). I also squeezed in more medications in the days leading up to the weekend as well as all through the three day weekend. I can get away with this particular plan of attack if I don't do it too often. It allows for fairly decent health for a few days but there is a price to pay... the price is exceptionally

Lighthouse Art Project

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Whenever I go through periods of poor health, I struggle with finding ways to feel productive, useful and even nonburdensome to those around me. As any chronically ill patient will attest, far too often I'm feeling too lousy to accomplish enough to stave off feelings of inadequacy during these periods and it is incredibly difficult to find ways to feel productive. Physically, during these periods, you are fighting off pain and a complex and constantly changing myriad of debilitating symptoms. Mentally, you are fighting off being bored to the point of tears because whenever you are feeling lousy, you are sort of in a vacuum getting nothing accomplished. Emotionally, you are fighting feelings of inadequacy, being a burden and being unproductive... you struggle with not having a purpose... you even struggle with the grief of losing the healthy, strong and pain-free body you once had, the active life you once had, the career you once had... let's just say that struggling with gri

Anaphylaxis In My Sleep, continued...

We had a busy weekend again with the grandchildren. It is always nice to have them around but this weekend my health did not cooperate. I screwed up a dose of medications on Saturday... and, other than a 15 minute snooze in the car on the way back from Burlington, I missed my usual 2 hour daily nap... and now my health is paying for these problems. I could barely keep my eyes open on Sunday (yesterday). I felt as though I had been heavily drugged and was fighting losing consciousness. I finally had a chance to lay on the couch in the afternoon to try to get some much needed rest. I slept for about two hours but I had a very difficult time waking myself up enough to even get up off the couch. I would try to awaken but my eyes wouldn't stay open and I would fall asleep again... and then again... and again.  As I was lying there, fighting falling asleep yet again, I was wondering if I might have experienced anaphylaxis in my sleep again.  The post anaphylaxis symptoms are very o

This Week Becomes Brutal

This has been a very looonnnnnnggggggg week. I feel as though two weeks have passed in the span of this past week! My health has been quite lousy all week but last night it turned to a rather brutal and painful stage. Of course, pain is always present, even on relatively good days, but there are far too many periods of worsened pain. This is one of those times.  Whenever my mast cells pick some area of my body to "attack" due to Systemic Mastocytosis, they degranulate and release many mediators. These mediators cause all sorts of problems in varying combinations... anaphylaxis, hindering effective bodily function, breathing difficulty, nausea, lightheadedness, dizziness, difficulty with neurological systems, skin rashes, flushing, hives, itching, etc... and some of these mediators cause nerves to inflame and become very irritated which causes even more pain at a brutal level. So, each time I have a mass degranulation of mast cells as they indiscriminately attack a particu

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.

Yesterday's Good Health Has Melted Away

I had a fairly good day yesterday... my health was relatively stable... I did some annual staining around the outside of the house... I assembled a hand pump station and stained it... I assembled the galvanized plumbing fittings... it was a productive day! This doesn't mean I didn't have moments of borderline lousy health yesterday... I did. A few times during the day, I needed to cool down... cold showers... cold water over my head until I cooled down... cold water on the insides of my wrists to cool down my blood... It was around 90 degrees all day so I had to work hard at keeping my body cool so my health would not fail. Around lunchtime yesterday, I wheeled our air conditioner to a window... set up the vent in the window... plugged it in... and we had air conditioning in our living room, kitchen and bedroom. I might need to resort to turning on the air conditioning today just to cut the edge on the humidity which is causing serious breathing issues for me today. Today

Spinal Injuries

Whenever friends and family see me, they invariably ask the standard question, "How are you?" More often than not, I respond with an "Okay..." and a bob of the head.  The real answer, however, is that I am never okay by a healthy person's standards. The truth is, "okay" to me simply means that I am well enough to be out and about with only a moderate amount of pain. It means I am well enough to be standing upright and talking. It means my health is currently stable enough that I am not needing to stay within ten feet of an available bathroom because I'm going to be sick at any moment. It means I prepared to be out and about by taking extra medications and foregoing all other activities so I would have the energy to be out and about at this moment in time. This is "okay" to me. "Okay" for me means I can attempt to accomplish some household chores which will always result in me being "less than okay".  "Okay&q