Our Lives

25776-03_-_Amedeo_Modigliani_-_Ritratto_di_D_die.jpgSo many people say things like, “I wish I could stay home all day and watch Netflix.”  They get to go to their 9-5 jobs, and then come home and do WHATEVER they want.  A chronically ill person, is sick (aka their job) 24/7!  How would it feel to be at work 24 hours a day?  That’s what it’s like to be sick.  To work a 24 hour job while feeling like you have the flu.

I noticed sadly when reading the groups on Facebook, how many people there really is who has no one in their lives.  It disgusted me to see how many POTS patients, had families, who thought they were making it up and just being lazy.  Or the ever running depression or anxiety excuse.

We do get anxiety and depression though.  Our bodies are running 3 x’s faster than a healthy person, and our adrenalin levels are generally soaring, especially so when we are sick.  So our bodies are literally in fight or flight mode, even at our best.  Of course we are sad too.  We are sick!  There is something wrong with someone who is okay with being chronically ill.  Sick of being sick.

I am lucky to have my immediate family who believes my POTS is an actual debilitating health problem.  They couldn’t tell you what POTS stands for if their lives depended on it, and constantly ask me to do things that are crazy for a potsy to do, but that’s just lack of choosing to learn about it.  I realize it could be a lot worse.

I live on my own.  I have a PSW (personal support worker) who comes to my apartment once a week to help me with any house keeping or meal prep I need help with.  To her it is easy, but to me it’s the difference of getting to live in a health environment.  I would be lost without her help each week!

I also have a Peer Worker, who comes once a week and takes me out for any errands I need to run.  She helps me get my groceries, takes me to get blood work, pet food, etc.  Anything I need to get out and get done.  Since my POTS causes me to faint, and I will collapse very easily from weakness, my Peer Worker is essential in case I get to sick and need to go home.  Which happens a lot.

I’ve been getting a lot of comments and questions from friends and family members of someone with POTS, and kudos to you all!  The fact that you want to learn more about the illness and how it effects the person you care about, that you want to understand and help in any way you can.  Just knowing you are a support system who believes and truly cares about us is exactly what we need.  We don’t always need someone to come over and do stuff for us, but knowing that you happily would if we needed you, means so much more than you’ll ever realize.

Don’t give us doctor advice, or try to push us to do more.  Remember, when we are going for a walk, our bodies are reacting like we’re jogging beside you.  Life and functioning is exhausting, and we just want you to be there.

Take Care.

Ash,

January Start Up

12575728_10154777712154815_462047359_nIf this month is any inclination as to what my year is going to be like, I quit now lol.  I have been sick, etc. non stop so far!

I went to get my teeth cleaned last week after a few weeks of really bad back pain that seemed to be getting worse.  Found out I had a cavity and almost cried lol.  My nerves are still shot from when I got the freezing during my infection and it hurt so badly.  Just the thoughts of being there for a cleaning was hard enough!

12546137_10154777712859815_153233045_oThen my counsellor/ nurse tells me I probably have a UTI or kidney infection, which is probably what’s causing my back pain.  I had a physical a couple weeks prior, and they had asked me to come back in and do the pee test over… so I ended up going in again on Friday and doing it for a 3rd time.  The office called me twice, but I was out with my Peer Worker so I missed the first call, and the second one they hung up on me and then didn’t call back.  So I don’t know what this is.  The back pain is slightly better but has moved up higher on my back and I have burning up into my shoulders and around my ribs now.  Very bizarre.

12544633_10154777712914815_206090048_oI’ve been hand knitting with size 7 thickness of wool.  I made a really thick infinity first, but I don’t like how net like it is.  I made a thinner one and it looks perfect.  I am also repotting more spider plants.  I need to get some bigger pots for them.  They’re growing great.

12540414_10154777712609815_675159816_nGot to hold my first Skinny Pig.  (A bald guinea pig)  and I was in love.  I don’t know what I’m going to do when my girls are gone, and I can’t have them any more.  I cuddled with Reese today, and was snuggling with my chin on her, and put her back and had hives!  That’s with allergy med.s so it’s just frustrating.

My dad and Lois are gone to their yearly trip to the States.  They were shopping for jewellery for their shop, and got me an amethyst necklace my dad new I was looking to get.  Usually they get us something neat as a little gift, but this is awesome!  Can’t wait :)

12511888_10154777712444815_896429682_nA local painter loves a painter I love too.  To get a print, it is $200, even at places like Walmart, so this lady repaints them with oils and sells them.  Not probably legal, but great for people like me, who would never otherwise get something of his.  So I got two beautiful prints from her.  Might get two others later.  Love them!

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Tomorrow is family dinner night.  We switched it to Sundays now.  OOoo gotta switch to Ghost Adventures lol.  Will talk soon!!!

Ash,

PS  Will get back too comments soon.  Just can’t sit up very long with my back.  Take care!

Christmas & New Years

1622015_10154711007299815_9077954782651774361_nI’ve been so busy, but that’s good bc now I have a lot to share with you all!  Christmas Eve at dad and Lois’ was so nice.  I got to spoil my little great nephews and get so many photos of them.  I can’t get over how amazing they both are!  Love them to bunches!  Jase loved his Ninja Turtle, and after giving Tickle Me Elmo a slap in the face, Carter decided he was kiss worthy lol.

945282_10154717187904815_5710357336924709645_nChristmas morning, mom, Grams and I were up and at their place before the boys had woke up!  It was nice to be there to see it all!  Everyone loved their gifts thankfully, and I got some great ones too.  I got a couple Jay from Jay and Silent Bob action figures, a beautiful necklace, scarf, Sons of Anarchy bobble heads, etc.  I got spoiled for sure.

Meghan, Julian and Liam were down with us, so we had a great time, and I got to come up and see them lots before they went home.

1425535_10154717187544815_5493427121897276162_nNew Years Eve, I did NOTHING!  I was on a binge of The X Files, and that’s what I stayed up doing lol.  The show is being redone at the end of this month, so I watched all 9 seasons of the show to remember everything before it starts again lol.

Aunt Kelly came down this week and I missed her so much!  Thursday night, we had out dinner/ Christmas time with her.  She got me a beautiful owl calendar, and funky ornaments that match my tree of an owl, a squirrel and a hedge hog lol and she got me the Mulder and Scully bobble heads I was planning on getting myself!  I LOOOOOVE them!

1233982_10154717187949815_6451542084309148967_nWe got to visit yesterday, and today her and mom came up for lunch and brought me the desk my Grams didn’t want any more, here, so I can use it in my spare room for my paper work, printer, etc.  It’s in my dining room right now until I get the room cleaned up to move it in.

My Christmas tree is still up lol.  My goal tomorrow is to clean the girls’ cage, and then take the tree down.

12483451_10154760801084815_1283854836_nPoor Reese was not doing well.  She wasn’t eating her carrots again.  I wasn’t able to hold her, bc I had gotten a pretty bad cold, and didn’t want to get her sick.  Yes they can catch a cold virus from humans.  So I got her out and gave her lots of cuddles, and she seems a little better appetite wise, but she still seems a little off to me.

12511809_10154760801274815_354757591_nI was supposed to get a Tilt Table Test done from my Neurologist, and instead I got an appointment sheet in the mail, saying my next check up isn’t until AUGUST!  Ahhh!  I swear you always have to be on doctors or at least specialists.  Drives me nuts!

Going to go feed my Zeus and do my dishes from lunch today, and will be back later this week to answer everyone’s comments.

Take Care!

Ash,

Quick

12348525_10154675946894815_1842229648_nNot replying to comments this time around because I am about to leave at any moment.  Thank you for them though, and they will be gotten back to asap.  Love hearing everyone’s experiences :)

Today is my youngest nephew’s birthday!  He turned 10.  I am waiting on his mother (the women in my family are always late… heading on a half hour now lol)  to come pick me up for the party.  I got him a pretty kick ass gift and am excited to give it to him!!!

12347847_10154693352319815_6972753806718149429_nI went to the G I and everything Crohn’s wise is going well!  I mentioned how in my blood work, it said my Iron was low, but he said not to worry about it, and wouldn’t even tell me what kinds of food are good for iron!  Seriously?  I don’t see him for 6 months.  Will be bringing my blood work info. to my family doctor when I see her in January lol.

12358511_10154675946874815_781466364_nMy birthday was good.  My sister and Nick, got me a throw pillow that has the words to, “You are my sunshine.” on it, bc that is the song I have always sang Zeus and his brother when they got stressed.  When I put Bizkit down, I sang that song to him, and wrote the words on the box he was burried in.  So it means a lot.  They also got me a zombie gnome lol.  It’s creepily adorable and I loooove it!

I have all of my Christmas shopping done now.  Was able to give Lilliane her hedge hog earrings which were cute, and the chocolate for her son.  She got Zeus a litter mat which is nicely working good, and got me two adorable pug throw pillows.   I can’t stop hugging them!

12373440_10154689565679815_7152048450844234320_nThe Pauls dinner went awesome and got to see majority of my family.  I am glad I went despite feeling so terrible.  And Amanda finally got out here and spent dinner with me.  I love getting to hang out with her.  Much needed sissy time.  We even got a couple shopping trips in, and she bought me this amazing bird cage shelf.

I am on a rampage of watching the old X-Files episodes, bc the new version starts in January, and I want the old ones to be fresh in my head for when I see it lol.  On season 3 now.

12367031_10154696501679815_406214999_nOkay, want to post some photos, so going to jet, and will try to write again before Christmas, but if not, I hope you all have an amazing holiday and will talk soon!

Take Care!

Ash,

Birthday!

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How could I forget?  My new Fiestaware!

I haven’t written in so long!  I’ve been having non stop computer problems.  I bought myself a new one and I really liked it, and then it just died on me!  So I exchanged it for one that was the same spec.s for $20 cheaper, and it actually hurt my joints to use!  So I returned it, and online, ordered an Acer Chrome book, and the screen is all messed up, so now I have to return it too!  It’s like I have bad computer juju or something lol.

12178132_10154581067164815_941800585_nMy birthday was yesterday!  Thanks for all the messages!  My sister got me a cute throw pillow that has, “You are my sunshine” on it, bc that’s the song I sing Zeus, and used to his brother Bizkit when they were stressed.  When I put Bizkit down, I sang him that song, and wrote the lyrics on the box he was buried in.  So the song means everything to me.  Plus she got me a zombie gnome LOL.  I totally love it, and it’s gross and cute all at the same time.  I love my gnomies <3

IMG_0362This weekend is the big Newfie dinner at my aunt’s this year.  I am making a taco dip thing that I personally don’t like, but seems to go over well.  When my mom made it growing up, I always called it cat puke dip LOL.  I’m excited to see my family on that side!  I love them all to bunches.

Sunday, my friend is having her art displayed at a Christmas craft show, so mom, grams and I are going to go.  I’m excited to see her, and love her stuff, and happy I finally get to come to another of her shows for support.

IMG_0317.JPGMy aunt Kelly isn’t going to be down this Christmas :(  Totally bummed!  Normally, from as long as I can remember, she would swap back and forth between spending Christmas with either her mom, or her dad and my grams here, and then go to the other for Boxing Day, but this year she has to work Boxing Day!  Honestly hate it, bc we have lost so many of our family we spend Christmas with lately, it feels wrong not having her with us on one of the days.

I honestly don’t know what’s happened since I last wrote.  Normally I go back and read the previous entry, so I know where to start catching up.

IMG_0329.JPGI got a bad tooth infection and looked like I had been smashed in the face with a bat lol,  got to finally meet Reese’s previous owner Karalee who has POTS like me, and had a dinner and movie night at her and her fiance’s place, found out I am no longer considered pre diabetic!  I am back to the normal zone, I have a new student of Susan’s started with me, which is always nice since they are always good kids, got my washer and dryer all hooked up.  I just need to buy the dryer vent kit next month.  And yeah, anything else, obviously wasn’t that exciting, or I would have remembered it!

I don’t have a lot of photos to share, bc some are on my phone, and on the computers that are now kaput!  So I shall share what I can find, and hopefully by next time I’ll have the computer crap sorted out, and have photos all in one place!

If not, just in case, Merry Christmas!

Ash,

Ages

IMG_0244I haven’t written in ages.  Honestly just haven’t been in the mood to share anything much.

Still no word from my tests from the Neurologist.  Obviously everything was fine, but then he was to book me, if that was the case, for another Tilt Table Test, which I will now have to bug him about.  It’s insane how chronically ill people have to take what little energy they have, to constantly be on their doctors to do the things they say they are going to do.

IMG_0250Years ago I got a root canal done, and have never found it quite right.  Can’t explain.  Woke up Sunday, feeling like I grinded the crap out of my teeth, by Monday morning my face was so swollen, I could barely see out of my eye.

Went for my normal Optometrist appointment, and he couldn’t get a prescription out of my left eye.  He did a bunch of tests for possible issues, which thankfully all came out okay, but is having me come back in two weeks after using eye drops 3 times a day, hoping it’s just extreme dryness screwing up my eye sight.

IMG_0194Then finally Tuesday, I got in to see the dentist and they needed to remove the tooth the root canal was done in.  I decided to get the whole shebang done and over with right then… and omg.  My wisdom teeth, I needed no pain med.s, nothing.  It was easy peasy.  This… has been a fight to get them in me as often as possible.  The pain of the freezing was literally the worst pain I have ever been through.  The staff was shocked that I was screaming or yelling at that point.  It literally ran my nerves through the roof.  I was done.  It took all my effort to be able to deal with the easy part of pulling it.  It was terrible.

IMG_0302My dad broke his hip at work falling off his bench, and smashed his shoulder up.  He is doing a lot better hip wise thankfully, and is on the mend.  His shoulder is still causing him problems, and was before, from years of repetitive work (he’s a drywaller)  so we shall see what happens there.

I am back with my counselor Susan.  She is such a breath of fresh air.  Someone who just gets me, and always has my back.  So nice!

11091244_694329620675833_6236175112750599712_nThe Pauls family dinner is coming up in a few weeks, and so is my 33rd birthday!  It’s funny, but I have zero interest in celebrating it this year.  I don’t get all depressed about getting older.  I could honestly care less.  The “old age” mark seems to get higher every year so, I don’t feel like I am.  I just have no want to do anything.  I like to make other people’s birthdays special, but I don’t want to when it comes to me.  I always feel like, if I celebrate it, it’s  for other people’s benefit, not my own.

IMG_0253I have pretty much all of my Christmas shopping done.  I have my counselor, my PSW and her son, and I believe that’s it… oh and my dad and Lois, bc I just renew a magazine subscription to Arizona Highways they love.  And some stocking gifts to get for Nick.  All the others are done, and either here and hidden, or on their way in the mail.

One of my gifts was on a HUGE back order, and it arrived finally, but broken!  I was so worried I wouldn’t get it exchanged for a new one before Christmas, because it is the exact gift I wanted for this person, but thankfully I was assured I will get it before then.  Can’t wait!

IMG_0252I have also gotten into this Fiestaware kick.  I can’t believe how expensive this stuff is!  I have gotten a great antique dealer up past Toronto, to give me great prices considering, and is coming this way to see their child, so will drop it off for free, instead of paying shipping.  That will be a huge help.  My birthday present this year :)

For Halloween, I stayed home, and all of my chocolates were GONE by 6:30!  Last time I had to give kids doubles and triples, and still had tons left over.  I am definitely making sure I have enough next year!

Okay, going to head out and hang some shelving and maybe do some painting.

Talk to yas later

Ash,

PS  Finally got to meet my first POTSY!  (My guinea pig Reese. her original owner became allergic to her, and through her mom, we found out we both have pots.  We’ve been chatting for a long time, but were finally both well enough to hang out!)

Zeus is Far Too Smart…

IMG_0212I went in to the vets on Friday, and they said his food is full of fiber, so they gave me this tube of laxative for him.  I give him the gel every couple of days for the next couple weeks.  I went out yesterday with mom and got him a variety of cat food to try.  Yesterday I tried the first kind, and he loved it.  Today I added his medicine in with the same stuff… and he ate just the gravy part of the meal and is slowly deciding after screaming at me, to try the kibble part that has his medicine in it.  Such a smart little shit!  After two weeks, if we notice no difference, I’m to bring him in.  I would like to have them do either a stool sample, or blood work to check what it could be.  I know it can be old age, but there may be an infection or possible cancer too, just in the beginning stages.

Nicole and Adam gave me a small freezer that opens like a fridge door, months ago, and I finally plugged it in yesterday.  There’s a good site for doing crock pot recipes, and some of my recipes I love, but don’t want the whole batch at once, I can do now, and freeze up for later!  Going to start with cookies for holidays coming up, and chicken noodle soup.

Got into my spare room where the freezer is, and all my boxes of stuff I am selling.  I went through every one of them, and sorted them better now that there is more stuff.  Like clothes in one, breakables in another, movies and books in another, etc.  It’ll be a lot easier to find stuff when I sell it, and not cause me to rummage through a big mess of boxes like I was before.

I would like to get my big portable air conditioner put away, since I hope it’s not going to get that warm again now! Lol.  I also went through more stuff to throw out, donate, sell, and spent a half hour looking for batteries for my Wii remote.  Ahhh I found it sitting on my CD player lol.

Also want to get Zeus and the girl’s nails done, and a good brushing, vacuum really well, dust, do the windows, and hopefully when I see Holly on Friday, we can go for more cat food by then, depending on how Zeus is doing (marking the types of foods and what he’s been like with them so I remember for later… also bc he’s a picky shit)  and I want to get my Health Card renewed since it’ll be due.  I also need to call my Neuro and tell him how the tests were all wrong for the hospital they sent me to, and get that sorted out!

Yesterday, I went up to mom’s and helped her take pictures of her stuff to sell.  We didn’t get all her cups and saucers done, but a big majority of it, and some other stuff.  Got to recharge my camera AGAIN now!  Been taking lots of photos!

I have my sis, my aunt Kelly, my mom, Holly and Nick’s Christmas gifts bought.  Oh and Caryn and Carter’s presents.  Now I have to get dad and Lois’ paid for, find something for Jase my other great nephew, and my oldest niece Jess the  rest of her present, the stocking gift for my Grams, and then I have Travis my oldest newphews gifts, Susan, Lilliane (who I already know what I’m getting, just have to get it ordered), and I believe that is it… oh and Nick’s birthday gift.  I know it seems early, but I only have two pay checks before Christmas, and a lot of it is being bought online, so I have to order it ahead of time.  I think I’ll be okay though… I think lol.  And I have to finish up my sister’s gift which is partly home made.

Dan from housing comes this Wednesday, so I’m going to put him to work.  He needs to fix my cupboard door, put a light shade back on for me from where I changed the bulb, and almost fainted putting the fixture back on it, and help me get my dryer up on the top of the stacking rack Lilliane gave me for the washer dryer.  The washer is all hooked up and ready to go, but I have to get a dryer vent kit before I can use it.  Not in any rush for that though, and it only costs about $14.

Okay now that I’m done unloading all my crazy plans for the next little bit, I am going to go watch Criminal Minds!  Love that show!

Ash,