Afraid of the hot weather

[Sheltiemom]

Hi, all -

Am only into the second season (spring) as a Sjoggie, and am dreading summer.  We're again having some really hot, windy days here in the Greater Cleveland area, and it's only the end of April.  Earlier this month we had some mid-to high 80's days.  I'm now afraid of the outdoors what with the sun AND heat.  And getting into a hot car around noon today was heck.  Dummie here should have run the air conditioning and waited for the car to cool first.  If it weren't for the MRI/MRA appointment, wouldn't have gone out at all.  Literally ran to and from the car with my umbrella.  By the time I got back home, my cheeks (only) were sunburn red.  Can't put much more stuff on my face (such as sunscreen) than I am already, what with the mosturizer and Topicort. 

The MRI/MRA didn't contribute, because I stopped the study before it got started.  I apologized and asked to be let up off the table after my head was enclosed in something that felt like Man in the Iron Mask, only plastic, and then having pads(?)pushed up against my ears, all to keep my head still.  Geez - all they would have had to say was don't move your head.  Duh.  I am claustro in the extreme.  These images were ordered by the neuro because last week I had a few minutes of aphasia - in other words, when I spoke it wasn't English or any other language.  It came out like "wab grom div jol," or something.  Then I was fine again.  Anybody else ever have anything like this that wasn't a stroke?  I read on this website the article on neurological aspects of SjS by Dr. Steven Mandel, and it mentions aphasia.

Thanks,

Sheltiemom

[navydad]

Ihave garbled a few words from time to time,, and as ofr the heat, here in Pittsburgh today its 80 plus,, and I hate it,,, I cant tolerate teh sun,, and I cant tolerate teh cold,, I have no idea how in the world I am going to survive any season,,, and if we still go to Mayo in a week,, I wonder how in the world I am going to hold up for a 800 mile car ride

[Blue Kat]

I live in Florida and I've been dreading the heat and humidity of summer for months!  It's supposed to hit around 90 degrees this weekend.  I don't have real bad sun sensitivity, only moderate, but the humidity with the heat really takes a toll on my joints.   

[Redetha1]

I live in South Alabama.  We have about 50-60" of rain each year so the heat and humidity are a real problem.  We are also getting ready for the hurricane season--beginning June 1st.  When Katrina came and we lost power, I thought I would  never get through it.  We now have a full house generator.  Hope we don't need it though.  Anyway, my point is that I can understand exactly how you feel. On top of it all, we are preparing for the oil spill and cleanup.  I understand that all oil wells are closed for now.  Gas is already moving up in price.  Boo!  Just when I am traveling next weekend.  I stay indoors down here except when it is cooler and early morning.    Good luck to you.  Hugs.  Redetha

[Bernice]

All I know is that it won't be anymore "family day outtings" this summer, the one last year or so, with it's mid day walk around Disney Land during July almost killed me, I suffered the worst flare of my life! I had times over a three month period when I literally did not think I would ever inprove. So whatever I do will have to be done inside!

I mean I love my family, grandbaby included, BUT that won't be happening EVER again!!!!!!!!!

[tedebear710]

I can relate about not dealing well with heat and humidity especially since my home is in Florida.  It's very sad to hate going outdoors from April to October.  Just spending an hour outside will make me sick.   My skin is also very sun sensitive.  I would get a rash on my neck from sun coming in through my car window.  We had the windows tinted and that took care of that problem.

My family has learned to ignore the weird things that come out of my mouth.  I swear my brain is half gone.  Sjogren's definitely does something to our cognitive brain functions.  Don't feel too bad about not being able to get through the MRA/MRI.  The last brain MRI my ENT or Neuro ordered, I had a major panic attack and had to stop the technician as soon as she got me positioned in the tube.  Thank heavens the doctor made an appointment for me at an open MRI clinic.  Maybe you could ask your doctor about one of those?

Hopefully the aphasia was just a temporary anamoly, and they will find nothing in the tests. 

[Sheltiemom]

Thanks everyone for replying, and for hoping the garbled speech was just an anomaly and nothing more.  Well it appears that the best thing to do is get out early and back in by 9 or 10, then back out around 6 or 7 if absolutely necessary.  It's going to feel weird not to be able to just up and go whenever I feel like it after enjoying a long and active life (for which I'm so thankful), but I'd rather stay inside than be sun/heat/wind blasted.  And I also guess it's best not to dwell on what this nasty condition has taken away and try to find more in the way of alternative, pleasant things to do and even run a "movie" of the good memories through my head instead.  Not that there won't be sadness attached to living such a different life.  Plus my gorgeous sheltie, Lily Elizabeth, died and I miss her more than anything.  She was my "baby."  After owning dogs since forever, this is the first time there won't be another to follow the previous one.     

[harrigan]

So Sorry to hear of th eloss of your pet.  Sending you hugs  - thinking of you xx Ailsa

[navydad]

Get a Doxie,, great lap dogs and very loyal,,

[olmphoto2]

For those of us unable to tolerate laying completely flat or enclosed to a degree as some tests require:

I was unable to tolerate a regular bone scan where a large massive hulk was above me and I needed to lay still for 17 minutes....I lasted only 3-4 minutes although I am not claustrophobic. Luckily, they had no other patients for a bit and about half an hour later they ran, not a full scan, but slices of the areas the doc was most interested in viewing.  I now believe that if I had had NOTHING under my neck (allowing air circulation there) the first time or better yet an ice pack there (done in later similar tests at a later time) I might have had a fighting chance of getting through it.

You might ask for a fan to be used on or near you, just so is isn't blowing over or near your face.

Autonomic dysfunction may be involved in our problems tolerating these types of procedures also.

Ask for pillows under your knees, making sure you are as comfortable as possible.

Be well hydrated before the test, making one last trip to the bathroom right before of course.

An MRI is very loud...so the ears are protected.  I don't believe the head 'cage' is to prevent you from moving but may provide landmarks for the radiologist.

Lastly, some of us tolerate CT scans better than MRI and your doc may agree to ordering one instead.

And the Serenity Prayer can be a great help!

[Blue Kat]

Sheltiemom, are there any "open" MRI places anywhere near you?  We have one in my county that's for people who are claustrophobic.  I'm fortunate in that I don't have those problems and in fact tend to get sleepy in those things.  The only other advice I can give is to keep your eyes closed or maybe wear a sleep mask (if they'll let you) so you can't see how close to the inner walls you are.  Sorry you have such a bad time with it!

[Dolly Dimples]

  Ive had the worst winter ever with the dryness and coldness,
                                            now that  is warming up a little here (UK) thought I'd fare better but, I am still suffering with coldness,

                                              and my eyes are needing drops in  practically every hour and less .

                                          I can't travel in cars, or public transport,
                                                                                              because of the airvents and open windows ,
                                                                                      and shopping has become a nightmare with all the cold air conditioning .

                                                                                       I walk around with closed eyes best part of the day,and moan about coldness evry where I go!!

                                                                                          I am really fed up right now, and just to throw in... that I woulden't get in a scanner, 
                                                                                          for a million quid!  can't even bear to watch one on TV , my chest starts heaving!   
                                                                                                                      gripe over, Dolly           

[Sheltiemom]

Writing once more to thank everybody else who has answered.  Have a call in to the neurologist to find out if she thinks an open MRI for the head/neck is possible, and if not really don't want all that extra radiation from a CT scan.  Have had at least 4 or so of them in the last 5 years, so might just skip the whole thing.  Even if it was a stroke, it wasn't a bad one - possibly a TIA.  If it's anything else, well - time will tell.

Best wishes all,

Sheltiemom