Thought of the day...

I need some retail therapy (and a smile), so I thought this was a cute picture to post! Aww! They are adorable! Shopping in Petsmart for their treats and toys!

I'm not going shopping today because of lack of sleep, temp/humidity, and allergies. But, I am ready to get out and do something fun! (if I had the energy) :)

I did have a really good mail day (week really), so that is fun!!! A few magazines and a lot of samples. Free Magic Eraser, YAY!!! :)

Oh, and I did manage a little sleep!!! :)

I am ANNOYED!!!!!!!!!

Well, I know it doesn't take much to annoy me, but...

SOOO... I am still exhausted from being very much an insomniac for over a week. I did get pretty good sleep yesterday during the day for a few hours and did NOT want to wake up. But, those few hours can't put a dent in my exhaustion and lack of sleep for so long. During many of the days the past week I haven't even been able to sleep well during the day, if I do sleep it is not very restful. I FINALLY started to sleep 1-2 hrs this morning before I had to get up to make phone calls. I made the calls, BUT does anyone answer? No... I have to leave messages. Does anyone return these messages? No...

I am not sure what I am supposed to do... I am losing my patience. I really just want to get somewhere positive healthwise... Not sure which way is up anymore, or what I am supposed to do?

My PCP made me call to check with the cardio. to whether or not I am supposed to be on both of these meds at the same time... I had understood when I went on the newer one, that I was staying on a smaller dose of the second at the same time as starting the new. NOW four months later they are telling me I am NOT supposed to be on BOTH! But, can I get any clear answers???? NO... It has been a WEEK!

And this is just one of my current frustrations!

I had wanted to do things in the real world today, but I don't have the energy, patience, brain power etc... Why can't I just get somewhere on some of these issues? Why does it have to be so hard?

I NEED SLEEP! :)

Spring Cleaning Continues...

So, I did FINALLY get a 5-6 hour "nights" sleep yesterday (Mon.) during the day. I had planned to do things during the day, but I finally was able get some decent sleep about an hour before I was going to get up. So, I decided I needed the sleep and turned off the alarm. :) So, all my "plans" did not go so well!

I woke up not all that energized, but worked to get food, meds, water, etc. in me. I was still exhausted so I went back to bed and slept about 3 hours. I had hoped to sleep in later and be on a more normal schedule, but no such luck!

So, since then I have been doing pretty good at being productive. I put away all the clean dishes and put all the dirty dishes in the dishwasher. I also cleaned the kitchen counters and floor! YAY! It's clean!!! :)

I also got my last fan cleaned of about a pound of dust!!! Even more clean now!

Since then I have been catching up on small tasks I have been needing to do... I get annoyed when you go to pay bills and the site is not working right or whatever!!! It is such a hassle!

AND the pharmacy gave me the wrong lancets for my new glucose meter! SO annoying!

Good news!!! I moved into a new purse!!! YAY! The other one was annoying me! And this one is big enough to carry water etc. around now that it is hotter out. :)

Now I am working on making a GREAT breakfast! Biscuits and soy sausage patties!!! :)

Later I have to catch up on a bunch of phone calls... Yesterday I was expecting two calls I never received! Hopefully at least the one gets answered!!! Or somebody will be calling back and not too happy about it! ;)

Dreaming of Ice Cream!!!

Well, I guess I will get fussed at yet again for the time of day in which I am up and writing here... BUT, I have a good reason! I was dreaming about ice cream! So, yes it means I was able to sleep for a bit (2-3 hours)! But, then I couldn't stop thinking about ice cream while sleeping so, I am now up... I did get some ice cream (non-fat frozen yogurt actually), and it tasted good! :)

Yesterday (Sunday) I did start taking Florinef. It hasn't been too bad so far. I had a little stomach upset and palpitations, but nothing too bad. I am starting on it slowly to hopefully avoid any issues.

Sunday I also continued to do a lot of cleaning. My room is now cleaner than it has been in at least a year. I put away some laundry and caught up with other tasks I had been needing to do for months! It feels good to get caught up on these things! I did get a 2 hr nap or so and slept the best I had in a week or so! That was nice! :)
I think I just got 3-4 hours of fragmented sleep overnight Sat. into Sun. But, finally I am able to get some sleep!!! I even felt good enough to go out in the heat Sunday to take out the trash and get the mail! Wahoo!

Saturday I spent a lot of time trying to sleep and a lot of time on the computer. I have been spending a lot more time on Facebook recently for whatever reason... Probably because of lack of sleep and energy.

I have also been working to figure out what kind of abdominal compression is for me, and have been wearing that on and off. My thigh high compression arrived I believe, but at my parents house, so I won't actually get it for a little while longer. I did get my exercise bike!!! I like it!!! It is quiet (which was important), can use for arms and legs, multiple resistance settings, and stays put while using it. I used it Friday and Saturday. It kicks my butt, especially when I use if for arms.

The Spoon Theory

Here is a link to The Spoon Theory. It is a good story/description of invisible chronic illness. It's purpose is to try to help others understand what it is like to live with an invisible chronic illness on a daily basis.

www.butyoudontlooksick.com/the_spoon_theory

WANTED: Sleep!

Ain't she cute? Aww!!! She looks how I feel! :)

An Attempt at an Update...

As demonstrated by the time stamp on this post the symptom that has been the worst recently is insomnia. The night before last I managed to get maybe 2 hours of fragmented sleep, last night was about 1.5 hours in the early night and could not get back to sleep until very late. I managed to get about another hour of fragmented sleep before I had to get up. So, my lack of sleep of course makes other symptoms worse. I did take a 2 hr. nap this afternoon, because I didn't think I had much choice... And even though I truly am exhausted for whatever reason I just can not sleep. As soon as I start to (every time) I hear things or startle myself awake. This type of "sleep" is more exhausting than staying awake. Who knows? Like I am reminded all the time I am WEIRD! :)

OTHERWISE... In an attempt at an overall update. I will start the Florinef soon (haven't decided when). I went to see the allergist last week. It was FUN!? I had to wait so long in a humid hot room that I had to sit with the door open and lights out. Finally I told the nurse I was about to pass out... she helped me lay down etc. They were quite nice. They took my vitals, blood sugar, etc. Then they pulled my drs. resident out of the other patient room to come and start my history and everything. I got to feeling a bit better (the best I would in that environment)and managed to get through the first part with the resident, wait for another 30 min., and FINALLY get to see the dr.

Thankfully, BOTH were very familiar with POTS and its correlation with Mast Cell Activation Disorder (MCAD). So, we discussed a variety of things, and they did a basic allergy screen and some of the markers that can indicate MCAD and related issues. I got the results back, and from the allergens they tested I am NOT allergic. Wahoo! I still am allergic to some things though... just not real sure what. I am not sure on the MCAD stuff yet, but I don't think much showed up on the blood work. BUT, or less you are having an attack, not much appears on these tests. So, I still really do not know...

Friday I had an appmt with my primary care dr. Pretty much same old stuff. I think I am FINALLY getting a rheumatologist appmt. Which I should have already been seeing one for the Ehlers-Danlos Syndrome (EDS). Talked about sleep problems, allergies, and arm and knee pain.

This is long enough, and I should probably try to sleep... :)

Happy WEEKEND!!!