So, I went ourside in the heat (mid 80s) to play with my dogs yesterday for about 10 minutes. Annoyingly, when I went inside, I could feel that my face was not hot and flushing, my head a bit fuzzy, and my GI symptoms kicking up a bit. Although I am well aware that heat is a trigger for me, generally 10 minutes isn't a problem. Grrrr. What a pain. (For our international crowd: we are in the middle of spring here in the US. Looks as if it will be a very hot summer. I don't think that global warming is going to be easy for any of mast cell people!)

Tell me about it!! Florida already has temps in the low 90s here, and Ive had the AC on for 2 months.. unusual. The electric company will love me this year!
Hope you feel better Hon.
Love u
Ramona

I agree Lisa. with temps in the 90s here, I can react sitting in the car just waiting for the AC to cool it down--so I try to plan everything for the early mornng. Only makes sense. Im so glad to see you back again!!
signed happy girl,
me

Heat is surely one of our most dangerous triggers due to how quickly it creates major issues with us.  This is due to two major reasons - our lungs and how they bring the heat directly into our lungs and thus blood stream, and our heads and how important our head is for cooling our bodies.  This is why most of us crave a fan always moving the air around even in the winter, for our breathing is the major way of keeping our bodies cool and anything which pushes our core temps up is going to create problems for us.  I've found that it's always much easier for me to deal with the cold than it is the heat.  Yet I've had both trigger me and it always has surprised me that if the water I'm in, be it a pool, or ocean or shower, if it's too cool, it will start me shaking so quickly that I'm surprised by it.  Yet, the heat will cause me to almost literally EXPLODE and within a matter of only minutes!!

There is NEVER too much care we can take to protect ourselves from the heat.  It is literally a matter of survival and we must CAREFULLY PLAN our outings so that they are done at a time when we can avoid the intense sun.  And those of you who live in near sea level areas, where it is going to be humid and muggy, you are in special danger with the heat for that heavy, humid air is going to create major issues due to the fact that it's laden with moisture and your lungs then have extra work to deal with it.

So, my friends, when you set up your miriad of doctors appointments, do what you possibly can to either be right off in the earliest appointment available or the very last of the day.  Try to consider all of these things in the process of setting up those appointments, and try to stay out of the heat if possible.  If you can park your car in the shade, DO, even if it means a parking lot situation.  Yet, think this out first, for if you have to walk a distance to the parking garage but yet parking on the street in the sun means being much closer then you have to consider, how long will it take you to walk to the garage and will there be shade during the walk?  It's much better to be CLOSE so that you can avoid walking in the sun and heat.    

In mentioning this, I would seriously consider speaking with your doctors about getting disabled parking permits!!!  Some of us have pots, but the majority of us have excercise anaphylaxis!  JUST WALKING to your car on a HOT DAY will put you into anaphylaxis!   My husband and I have decided that we are going to pursue this for there have been several times when I've just barely made it to the car and having had that permit would have really saved my skin at a time like that!!   Not having to walk even 500 meters would be great when you're working with 100 (40) degree heat!!  It could make all the difference!!  

And, think about it - using a motorized scooter inside the mall is a tremendous blessing!  I've had to do this myself, especially when the mall is huge!  I can't do all of that walking, it's just way too much anymore and it has put me right on the edge and if you put this on top of summer time heat and the mall is not so cool as I'd like it to be, you have a perfect situation for an attack.

So, gang, think ahead and plan it out!!  It could save your life!


Lisa



ps -  Mona, my computer's back home, obviously!!  Thanks!  You're sweet!  

Oh, and the Ego is such a bad animal!   I never realized how brittle my ego was until I began using these scooters and wheel chairs for things like malls and airports!!   And we "look so healthy"!!  LOL, but I'm getting used to the idea cause I've learned that it's just not worth it!!  

I can remember when my masto first came out of hiding - I was post-op from my hysterectomy and here I was going through absolute TORTURE and nobody had a clue as that disease was the problem.  We thought I was just really really anemic and weak from the surgery.  Here I was, going to college every night and just the distance it took from the parking lot and walking down the corredor to my class, was enough to do it!!  My stomach would begin to ache terribly as I was walking down the hallway, and I'd begin to shake terribly!  I began to say, What is wrong with me?  and there were a few times when I'd be praying just to get into my classroom for how awful I'd begun to feel!!  A couple of times I just barely made it and other times when as I sat down, I began to have bouts of dyspnea already!   I was so close to full blown anaphylaxis that it wasn't even funny!!!   Yet the day that I did go into anaphylaxis, the crisis lasted a full 3 hours in the ER and nobody had a clue it was anaphylaxis due to my hypertension during the crisis!!!

I shocked a doctor the other day when I told him that I get hypertensive with anaphylaxis!  You should have seen his face - it looked like this:     His eyes really did this!!!   I almost broke into gails of laughter but managed to check myself cause I realized he just wasn't getting it!!!

Now that I'm properly medicated, I can manage a lot more, but when I did a stress test the other day I only got .57 of a kilometer before I went into anaphylaxis.  I was walking pretty fast with the test, so I think I could handle going further if I'm walking slowly, but I start getting so spacey when I walk too far that I know, the next step is the stomach ache and then the shakiness and TROUBLE!!!  

So, pride must deminish and be put into its proper place!  Well, I always thought those carts would be fun to drive.....AND THEY ARE!!!!!   At least I'm young enough to enjoy it!!  I'd had to be decrepit and old and going about in them and be too old to enjoy the thing!!   But, I just never wanted to have to depend on them, just to have a joy ride or two!!!  Oh well!!!

I figure, if I have to use it, I might as well enjoy it to the fullest!!  Perhaps I'll buy one of those world war ace scarfs and those goggles and caps too!!   hehehe   O better yet, a pair of Ray Bans so I can look like this:  

Fabulous suggestions Joan! I don't really get sick in the car waiting for it to cool off, but you never know -- I could. So, I think I will stock the car like you do!

I used to feel ill in the morning, but not anymore since I started meds years ago. If I forget to take my morning meds by 8 am, I will feel a bit poorly and that will remind me that I hadn't taken my meds. Feeling ill in the morning is very common for mast cell people, though.

I'm in Arizona,,,,, I won't say any more! Joan yes for me on the mornings, it does take a few hours for me to get feeling better. I finally begin to acclimate fairly well to the heat with bouts of total intolerance. When the heat starts to come on I get pretty sick at first, then I try to go out in the shade for bits of time and work my way into the sun, day by day trying to acclimate to the extreme heat.. Gardening I wear the goofy gardener hat, long sleeves and pants, I'm a total dorkaroo, but the garden looks good! Strangely I had a terrible day today because it was unseasonably cool, (76) I got the goosebumps got to cold and then started to crash while I was out.... so bizzare aren't we! I'd finally gotten better with the heat!

Melissa, you should make sure you pre-medicate for the plane trip and also make sure you've ordered a wheel chair to reduce the walking.  If you are going into Miami airport, it's really big and way too big to walk coming off of a cross country flight.  The more you can prevent the triggering, the better!  Travelling is physically stressful and it sets us up for problems.

Here's an example:  

I just returned from Sao Paulo.  It's a 5 hour drive for me and my husband was driving.  I've been running ragged this week and Monday, Tuesday and Wednesday I had to work.  I wanted to take the morning off on Wednesday (I don't do well in mornings either Joanie) but couldn't and I got into the car already whipped.  I ended up fainting on the trip in spite of taking extra antihistamines.  But we got into Sao Paulo around 8pm and went straight to the hotel and had dinner and bed by midnight.   Thursday morning we were up and out of the hotel by 9:30.  We were there to attend a fair on Education/School Material.   The very first thing I did, even before registering for the fair was to get a wheelchair!   Well, I was pretty much fine up to that point, but I had to stand and wait for the wheelchair.  Sure enough, due to the stress of the day before, I was not in good shape for standing and waiting and I began to feel my stomach aching after several minutes.  There was not a chair in sight!  So, instead of just waiting my husband had us go register.  Just standing there registering put me right on the edge and things went downhill from there!!   That wheelchair saved the day for I could NEVER have done all the walking that had to be done.  My husband was put out, though, not because he had to do the pushing, but because he didn't like the idea that we had come all that way just to see me get sick!  But I don't want to limit my life to my home and if it means that I find means to adapt myself to my situation so that I can lead a near normal life, then so be it!!!

Well, I dealt with the triggering by upping my meds.  I didn't kick in with the prednisone because it elevates the blood pressure and since I get hypertensive with my crises, I didn't want to add that to my situation.  The prednisone probably would have helped me get through the day better, but I have other issues with my aorta to have to consider and so I avoid prednisone like the plague.  Yet, even in spite of upping my meds, I triggered anyway!  We were on our way back to the hotel when I had the first crisis!  Once again I took Allegra (for the 3rd time that day) and all passed, thankfully.  I got to the hotel and rested and then we went across the street to the mall for dinner (a lovely restaurant with gourmet food - what a pleasure!).  But even though I didn't have far to walk nor did I eat anything that was "dangerous" the physical effort was just too much for me and I had a 2nd crisis shortly before I crashed out for the night!!!   The next morning, we slept in and this helped to restore my body and we took our time coming home.  I did faint again on the way home even in spite of the extra meds, but otherwise, the day was easy and without major events.


So, Melissa, this is why I suggest, for your sake, make sure you are not getting on that plan already exhausted!  You've got to have a really good night's sleep before the day of your flight.  You need to have a wheel chair from the time you enter the airport in Seattle (right?) to the time when you leave the airport in Miami - the entire way.  No walking anywhere!  You also need to make sure you've premedicated and keep your doses high, and plenty of fluids during the flight.  You may want to consider asking for a special meal so that you don't have the MSG packed regular meals cause MSG is a trigger for some of us, but it also seems to help make you dehydrated I find.   Then, at any sign of triggering, take an extra antihistamine.  I ended up taking 4 doses of allegra on Thursday!  I had no choice, I had to take 2 beyond my normal dose and one extra ranitidine beyond my normal dose of 2!  Then the day you arrive, make it VERY LOW KEY and the day after too.

Melissa, if you take these percautions, you will find that your overall vacation will be preserved and you won't fall into the trouble I did with my situation.  It isn't that I wasn't aware of what could happen and I did everything I needed to in order to keep myself out of trouble, except that I was not able to rest up before the trip.  If I had been able to, then Thursday would have been completely different!  If I had not had to go into work (I had planned to stay home that morning) I would not have had the trouble I did on Thursday, I'm positive of it.  I would have taken only one extra allegra during the fair and would not have had the trouble I ended up having, of this I'm certain.  But it was because I was just so run down and had not been able to rest beforehand that I was on the edge the entire time and finally went over it!!!

Hopefully, your trip will be preserved to be the rest and relaxing vacation it's meant to be!!

Lisa