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!!!

Thought of the day...

Don't make either of these dogs mad!!!

Or

Careful how you pick your friends. One may have a much larger mouth, but the other has all the energy in the WORLD!

The zebras are annoying me!!!

I know the zebra pics/slideshow are messed up and the one only shows its better half... But, it has a mind of its own! When I left my attempt to add a zebra pic or two the other night none of the slideshows were working etc... So, I had one nice picture. Overnight it turned into zebra heads and rear ends of all shapes and sizes! I will maybe get to fixing it one of these days... :)

Thought of the day...

Help me! I'm stuck and I can't get out!!! :)

The Cookies are GOOD!!!

I made the cookies last night, and they are sooo good! I have to stop eating so many of them! I crave sweets so much more now with current meds etc. It is crazy! I used to be able to take or leave all sweets, cookies, cake, ice cream etc... I would go years without ice cream! Now almost all I crave is sweets! Not so good for a diet or blood sugar! :)

I am still really mad that my main lamp that lights the room I spend the most time in exploded and burnt up the other day!!! It leaves everything in here darker and not illuminated properly. It is weird, but without the right amount of light throughout a room it can really affect my symptoms and ability to function. So, I have to find another lamp of same wattage, height, etc. that can go were the fried one once lived.

On a more positive note I am excited I got more dusting done, and all but one of my fans are clean!!! Some had like a quarter inch of dust on them!!! The air is much nicer now!!! I can breathe, I can breathe!!! :) And one of them was one I rehabilitated back to work. It was running, but not spinning, but I cleaned it up and FINALLY it WORKED!!! WAHOO!!!

AND my couch is now CLEAN!!!

I am doing good at spring cleaning!!! :)

Now if the trash would only magically take itself to the dumpster!

I got a TON of cleaning done!!! (for me anyways)

Today I did not get an early start... My alarm kept going off and I kept resetting it! :) But, I finally got myself up and together enough to make a couple of phone calls (made a bit of a fool of myself trying to call less than an hour after waking, but I was afraid the offices would be closing and I wouldn't get a hold of them).

Then, I started with those stupid baby steps again, and started to get more cleaning done. I vacuumed the rugs, DUSTED!!! :), vacuumed the WHOLE apartment!!!, and neatned up and put a bunch of stuff away!!! It is the cleanest in here that what it has been in a LONG time!!!

I also got the water pitchers and bottles filled (which sometimes is about all I can do in a day), took care of the trash in here (not taken out yet), AND I finally remade my bed with clean bedding!!! I am excited now that so much is CLEAN!!! :)
But, I will likely pay for it tomorrow! :( :(

Best part??? I MADE COOKIES!!! (bake and break, but hey they are cookies!) :)

It was a much more productive day!

I guess I missed a couple of days... Whoops!

Sunday was a rainy and not so productive day... Probably because I paid for doing quite a bit the day before. :) I think I got a tiny bit of cleaning done and worked on the computer. I did get to the library though!!! Wahoo! So, the DVD's are finally back! And I had to pick up a dinner treat on the way back! ;)

Monday I did a little better and I got the dishes done. I got a tiny bit of cleaning done again and worked on the computer. My sleep has been really messed up with the weather, plain 'ole just me, etc... I have been doing better at keeping my meds on schedule and have been taking my vitamin, magnesium, and Vitamin D every day like a good girl! ;) I tend to let those slide after having to down the normal 10+ pills a day. AND I did some baking!!! So, I have biscuits and breadsticks!!! :) (Trying to make room in the freezer)

Yesterday... I didn't feel like posting.

Yesterday started out rough. I think because the day started out cold and got quite warm. It was like a 50 degree difference. So, I had difficulty sleeping and then felt like crud when I got up. I took it slow and actually got more than I thought I would done. It was actually quite nice. The only thing was I didn't feel up to going out and driving etc... So, the library dvds did not go back! :(

Midafternoon I did get some energy and started with baby steps of trying to get things done... brushed teeth, picked up and cleaned the kitchen (minus the floor and dishes), tried abdominal compression, worked online, picked up the bathroom, and searched online and found the exercise bike I wanted to get and finally ordered it!!! I also searched and found the compression hose that I am going to try and ordered that as well! Online shopping is great! It just stinks when it is all health related stuff!!! :) It actually became quite a productive day for the way I was feeling originally. I just had to take things slow. It sounds so silly to list everything out like this, but it is the way that we have to think about and plan our days. I think it also helps to demonstrate to others that someone like myself is not able to just clean the apartment in two hours on the weekend etc.

I am excited that I got the bike and compression ordered! It takes a bit off the to do list!!! And I tried the abdominal compression... semi-uncomfortable, not sure I noticed a difference... it is probably not the best one for me. But, I am learning! :)

Then, the storms started to roll in... (well the front anyways... my head could feel it!). I got a little sleep between 11:00 pm-1:30 am. Got up for a while... Slept another like hour and had to go to bathroom and my head was still throbbing. Took motrin and tried to go back to bed. Finally fell asleep sometime after 7:00 am and was able to sleep and not want to get up till 1:30 pm. Crappy schedule, but I needed sleep after my head pounding all night! :) Fun times!!!

Why Invisible Zebra?

Seems random and odd, huh? Am I hallucinating? No, I wanted to come up with a fun and meaningful title that at least somewhat describes me. The zebra part comes from the saying "when you hear hoofbeats, think horses not zebras." As in, just because that is what is taught in the medical field, does not mean that is the way it is ALL the time! I am a zebra in this case, because I have accumulated so many rare, out of the box diagnoses.

The invisible part refers to having an invisible chronic illness. I may not look sick, or like to think of myself as such. But, I can not change what is on the inside. My symptoms can't often be seen by the naked eye, but does not mean they are not there. One of the hardest things with an "invisible" disorder is that it is invisible and others do not know or understand what you are going through. They think that you are making it all up or are giving them a hard time.

So, that is why this is called "Invisible Zebra".