Much Happier

Alright I’m back to me again lol.  Sorry about the past few entries being so rough, but I was seriously worried.  I’ve been doing a lot better, and slowly gaining my energy back.. what little I had anyway.

before I chopped the hair… looks almost the same now lol

Yesterday my mom & grams moved back into the town house where Amanda & Nick are.  Nick hasn’t seen the place yet bc he’s still at his dad’s lol.  It’ll be too cute to see his expression when he comes home today!  Yesterday for me, nothing exciting was going on bc I couldn’t help.  I watched documentary’s and set up the shelf my mom gave me.

She was really sweet and got me all of my groceries for the month bc she knew I don’t get paid until tomorrow, so I can just pay her back then.  I was running seriously low lol.  And running out of all the little things you only need to pick up every so often!  So it was really nice to eat 🙂

Today, I’m going up to my mom’s to help them put away their stuff.  I’m on floor patrol lol.  Putting away books and clothes and movies… anything low to the ground basically :-p.  I feel bad I can’t do more, but at least I’m doing something finally!

I’ve been trying to get the place cleaned up.  Marlene helps me with the stuff like changing sheets, vacuuming, dishes, cooking, etc.  but I’ve got a LOT of laundry to do tomorrow which should be interesting.  And I want to get my bath tub cleaned which uses up all my potsie spoons for a day sometimes doing it.

The heat has let up a bit… or the humidity anyway.  So I can use my window fan some of the day so it’s not so intolerable in here.  I think that is what made my pots sooo much worse.  I’m pretty sure my blood pressure is back to it’s normal crazy self, going high instead of low.  If it isn’t, then it’s not bothering me as much!  I haven’t checked it since Friday, bc I’m feeling more like my normal sick self lol.

Next month I go to see my dietitian, then I see Maeve the psychiatrist at the mental health clinic just to do a med. review bc I have been having trouble this month with my depression, and I want to see if she can up my sleeping pill bc it does work, but barely.  She even said back in January that I’d have to go up at some point probably, so that’s okay.  Then the day after I see her, I go to my GP for a full physical woo hoo lol.  NOT!  But it’s cool bc I want to talk to her about some stuff, like allergies, pain, etc.  But, I still haven’t heard back from the Neurologist!  My Cardiologist… well one of, did the referral himself, so he could get me in quicker, and I haven’t even heard from them to make the appointment yet!  Who knows how long I’ll have to wait after that!

The book I’m reading now is called, Imperfect Birds.  It’s about a married couple, and their daughter Rosie, and just their trials of trying to raise her to be good, despite her being so much worse than they think lol.  It’s actually pretty good since I didn’t know if the story line would keep me interested, but so far so good!

Did you all hear about Gary Coleman and Dennis Hopper? CrAzY!!!

Alright, gonna skip out and get some stuff done around here before I leave to help out at my mom’s.  Hope you’re all feeling less crappy from this past week.  I know a LOT of you have been really sick too and in a lot of pain.

xo’s Ash,

Advertisements

Wind Wind! Nope NVM! It’s Just The Fan!

Okay my blood pressure is low.  LOL  I know every POTSIE out there is not surprised, but I don’t actually get low blood pressure.  Mine soars when I’m standing!  Right now it’s around 95/65 and I know that’s NOTHING compared to what some of my potsie friends go through, but it’s really had on me bc usually it’s the extreme opposite.  I don’t know why I’m writing this entry right now, bc it’s taking me twice as long having to go back and fix all of my mistakes lol.

Dysautonomia Ribbon

This weather, is just wrong.  I used to be a normal Summer lover, but not anymore.  This year since my pots has been at its worst than it’s even been… I’m kind of terrified to be honest.  Yesterday I went to bed at 7pm bc  I was so dehydrated regardless how much water I was chugging, that my throat hurt it was so dry, and I was constantly drinking, so there was no reason for it.  I went to bed bc I couldn’t hold my head up, and just wishing I could get some fluids into me.  I remember when I first heard about potsies going to the hospital, what they were going for, and thanked my lucky stars, that no matter how bad I had felt, it was never dehydration to go to the ER… I have a scary feeling, it’s going to be happening a lot this Summer.  I’m rocking in my chair side to side bc I’m so dizzy, and when I stand to get a drink, I’m double over trying to keep my balance.

I missed my depression and sleeping pills last night.  The depression pills are fine depression wise, but they give me horrible headaches to the point where I can’t be in the light for too long… another reason I’m surprised I’m writing an entry.

I’m bummed bc I’m missing my youngest nephews soccer game, but I can’t do it.  I just can’t be outside in this heat for over an hour after a BBQ.  So I’m home alone in a tank top and short shorts hoping my fans will magically turn into air conditioners for me lol.

My dad wants me to go to his place this weekend and stay while they’re having a yard sale.  He’s going to be bummed bc I haven’t seen him since Easter, but I just can’t do it.  The thought of going anywhere further than the couch seems impossible at this point, and he’s over an hour away driving.

The sky is darkening out, so hopefully that means thunder storms.  I am scared being alone so much and feeling this way.  I’ve never felt like this, or at least for this long, to this extreme.  All I want to do is sleep and I need to be getting more fluids.  My family is busy helping each other and getting ready to move to stay with me.  I wish my friends didn’t live so far away (about 2 hrs) bc I know they’d be here if they could.

Just worried something bad is going to happen, and no one will know bc they’re all too busy.

Ash,

Happy Monday! lol… okay I can’t actually say that and be serious!

Hey everyone!  Hope you’re all doing well and enjoying the warm, disgusting, sweaty, gross weather you all seem to like for some unGodly reason!  haha.  I’ve been hiding in my apartment with fans blasting!

People with depression will never get anywhere with recovery until they are ready to fight.  Nothing anyone says will make a difference… but they sure as hell will remember who was there and who wasn’t.  Same goes for any illness, mental or physical.

My Angel When I’m Broken

I LOVE my friends and family, and consider my friends my family.  I love them more than anything, but when I’m depressed (truly going through a relapse depressed) I fall away from everyone.   Not at all bc I don’t care about them, but bc I worry that I am an inconvenience more than someone who is actually very loved.  I waste away like a piece of trash, feeling dead inside.  It’s the scariest thing I’ve ever dealt with.  I am on proper meds now, and I fought like a bitch to get to where I am today.  I get scared sometimes that it will come back and bite me in the ass, and try as much as I can to ward off triggers, which I think is the best thing I can do in certain situations.  Sometimes though, the world just sucks.  And not in normal suckage everyday stress, which after what I’ve been through is easy to deal with, but when the world feels like it’s trying to shut you out, and all I want to do is fall asleep and never wake up… it scares me.

Today yet again, starting yesterday, but blew up today, I felt so … sad.  I was sick to my stomach from it, and nothing I did was helping like usual.  When you suffer with physical illnesses as well, it’s not easy to keep yourself busy.  I was holding tough until my mom called and all we were doing was having normal chit chat, and I lost myself all over again.  I was bawling and my whole body was shaking that I sent my heart and blood pressure soaring.  I did the only thing I could to keep myself safe… I went to bed.  Whenever I am going through this, all I want is someone I love to come save me… simply sit with me and be with me, not even having to say a word, but it never happens, which it heart breaking.

Tonight I woke up from Zeus’ screeching and I felt well enough to get up and sit in the living room, and within 5 minutes of being awake… my mom pulled in the driveway.  Little things like that, is EVERYthing I need, and it made my day.  I still feel nausea almost constantly and am stressing bc I have $4 in my account and I need everything.  I still have another week to go before I get money for food, and the only thing that staves off the nausea is gingerale.. which I’ve run out of too, so I think all of these things, as well as the weather which makes me sicker than any other time of year, definitely hasn’t helped in triggering my depression.  Suicide is the scariest place a person can go, and I REFUSE to go there again.  With all the physical ailments I’ve had, suicide beats them all ten fold.  I am not suicidal, but when having a set back, it’s hard not to worry that it may come to that place again, bc you never really know until it comes down to it.

I’m so happy my mom came to check up on me.  All I needed was her on my couch being there for me without doing anything or saying anything.  Just little things like that, show I am cared for and loved.  That someone else was wanting to know I was okay.

After she left, my neighbors set off fireworks a couple blocks away, and I watched them from my living room.  I love fireworks.  I used to be so scared of them as a little kid and would sit in my grandparent’s house and hide until they were over with LOL.  I was always terrified I’d be hit by one of them.. and the year I forced myself to go out and enjoy them… my poor cousin Dustin who had a broken arm at the time, got smacked with a piece off the firework right on his cast!!! LOL.  But now I love to sit out and watch them… with major anxiety but still fun lol.  I’m not too worried, since Dustin is the same cousin who has only gone out once during a thunder storm bc he’s scared of them, but he had to bring something inside, and in the short amount of time he was out there, he got hit by lightening!!!  So I think he just has the bad luck gene when it comes to weird things like lightening and fireworks lol.  Mind you I’m a complete wimp when it comes to being stuck outside in a storm.  I turn into a complete psycho bitch until I can get indoors LOL.

Alright, just wanted to rant… and for some reason blab on about nothing as well hehe.  Hope you all had a great long weekend 🙂  And will update soon!… I hope! 🙂

Ash,

Been a Bit

Sorry it’s been a couple weeks since I’ve written.   I hadn’t realized it was that long!

I went and met with my dietitian… when it comes to diet and Crohn’s Disease, I’ve got that down.  I’ve been to two dietitians one of which has Crohn’s herself.  I was hoping this woman bc the hospital she works at is just at the end of my street basically, would be knowledgeable in POTS, but she didn’t know anything about it!  I don’t think she knows anything about it at all, or even what it is.  I see her again next month, and she is going to see what kind research she can come up with, but I’m not putting too much faith in it lol.

this will be me very soon lol

She obviously mentioned how I’m not getting nutrition from barely eating.  I had to tell her over and over that I have a good appetite, it’s my orthostatic intolerance when trying to prepare healthy meals.  When I am well enough I make sure I get as much good nutrients as I can, but I’m also on disability and can only buy groceries once a month, so veggies and fruit are only around for the first 2-3 weeks.  She did let me know about a great service, where you can buy a box of groceries for $10 or $20 a month depending on the size you want, and it saves so much money!  In the $20 box I’m going to get, I’d say there is about $75 worth of food in it!  So even if there is a couple things I may not like, or can’t eat due to Crohn’s, I’m STILL saving a ton.  So I’m definitely going to be doing this starting next month.  It also delivers the third Thursday of every month, so I will also have delicious good for me food ALL through the month.

So I am much more comfortable with Marlene now.  I was uneasy about asking her to help me with certain things, bc I don’t know what she does and doesn’t do.  They said cooking, and “light housekeeping”  But what do they, or Marlene consider as light?  To me everything is rough lol.  I was having a hard time of thinking of things for her to do to fill the whole hour she is here, and was going to ask her boss about knocking it down to her coming once a week, but since we’ve had so much time to talk lol I’ve found out more things she’s willing to do for me, which is great and an amazing amount of help for me.  She demanded I let her do the litter box bc I kept saying no lol.  I don’t mind doing it bc I have seen everything under sun from working at an animal clinic, but a lot of people detest it, so I didn’t want her to, but she said it didn’t phase her to, plus had her vacuum and change the sheets on my bed.  They sound like something I should be able to do, but it involves standing for quite a while at a time.  Plus other stuff like doing dishes and making me lunch.

Health news aside, I went to my youngest nephew Nick (4 yrs old) his first soccer game.  It was so adorable!  He saw me and called out, “My Ya!” (don’t ask it’s what he calls me lol) and ran off the field and jumped into my arms and gave me a kiss and hug.  Gotta love that 🙂 hehe.  It was so much fun and way too adorable for words watching all the kids running around just having fun and getting an idea of how to play.  Nick even stopped a goal from going in!  Amanda got tons of pictures of him and videos too lol, but she still had my camera, so I’ll up load some on here when I get it back.

My Grams is finally out of her cast, and she’s so happy about it lol.  She still has to watch the amount of pressure she puts on it, but she’s doing great!  There were 4 areas that they cut into during the surgery and  they look so amazing already, I seriously doubt it will leave a permanent scar!

My mom and grams are moving this Saturday!  Back to the town house, that Amanda and Nick are in right now, and staying with them until Amanda can save some money to get her own place for her and the little soccer star.  But bc my mom hasn’t been doing well, she STILL hasn’t got all the painting done!  It’s going to be interesting to see what she gets done in time.  It sucks, bc I’d love to help… yes weirdly enough I love painting whether it’s on a canvas, or regular wall painting, and she could really use the help, but I’m no good to her lol.

So for the novel that I am reading right now, it is “Best Friends Forever” and it is good!  I thought it would be some cheesy best friend lovey dovey boring book, but it’s actually off the wall compared to what I expect!  Anyone who likes interesting, witty, lovable books, will love this.  I got it recommended to me, and I’m so glad I decided to give it a chance.

With having no *knock on wood* money troubles at the moment, and not having to worry about the need to do cleaning stuff, I am feeling so much better.  A lot of ppl with POTS can’t handle caffeine at all, but since I’ve been pumping myself with coffee (3 a day is not a lot to some, but I usually drink that, or less in a year!)  I’m feeling better orthostatically!

The heat is definitely kicking my butt though!  I’ve busted out the window fan and it’s so hot out it isn’t doing any good! Lol, so I’m going to try to save to get another fan to have.

And good news!  Susan my counselor is back!  Poor thing is still having back pain though obviously, so I was surprised to hear from her, but I got to see her for a quick visit before Marlene came over on Friday morning, and I feel so much more okay about the depression I was going through, and that it was just a short relapse, not a full out one.  I still feel it at moments, but it’s not overwhelming and I’m able to quickly get my mind frame from it by doing something to keep myself busy.

Other than that, I can’t remember much else… it’s 4:30am lol.  I wanted to write while I remembered to in case I end up in zombie land tomorrow… or err later on today I should say now lol.

Take care all!  And HAPPY BIRTHDAY PAUL!!!

Ash,

Depression Going Crazy!

Hey everyone 🙂

I’ve been having a really hard time with my depression lately.  I’ve been doing really well for over a year, but this past week it has reared its ugly head.

having a rest & being silly

I get really sensitive to how the people closest to me react with me, and instead of getting angry like I used to, I find this time I just break down in tears.  Totally not me at all.  I’m very confidant in who I am, and my relationships, so I’m really worried that my pills are no longer working, or working as well as they were.  I have a horrible problem with resistance to medications, especially nerve pills, so hopefully this isn’t the case, because I have always considered the ones I am on my miracle to my depression!  It took me forever to find one that worked… years!  I don’t want to go through that battle again, let alone after only so little time of peace.  My family has been good about it, but they can’t be here for me because they are all busy doing their own things, which I totally understand, but it’s making it a hundred times harder to deal with, doing it on my own.

One nice news to relate, I had my PSW Marlene come for the first time today. It is totally bizarre to me, to have someone doing stuff for me, especially cooking.  I took a bath while she boiled some potatoes for me and did up a few dishes, and I was totally weirded out by it!  I feel weird enough if my mom comes over to help… but this was just silly lol.  I don’t like telling someone I’m not paying to do something for me.  I know she gets paid, but it’s weird, I’m not her boss, so I don’t feel right about asking her for things.  I’m too damn independent!  lol.  She is really sweet though.  She is from Peru, and is really smart and loves animals.  She is really easy to talk to as well.  I will be seeing her every Wed. and Fri.

My poor counselor has thrown her back out AGAIN.  She has a horrible time with it, so she has been out of work.  I want her to rest and not come back until she is sure she will be fine, but I could really use her this week to talk to about the resistance.  She has a good way of kicking me back to reality because she knows me so well and my depression to know just by looking at me how I am feeling.  She’s a big support to me, and without anyone around, I feel pretty lost.  I hope she is well enough soon.

The M & M Meats Crohn’s and Colitis BBQ went really well even though it was rainy and windy!  There were tent toppers blowing around and everything else hehe.  We were able to go, but I stayed in the car and waited because the line up was soooo long!  Which is awesome 🙂  They even had a rock climbing wall set up!  I was so jealous, I wanted to go!  Something I have always wanted to try he he, so hopefully this time next year I’ll be well enough to give it a go!

If I can figure it out, I’ll post a EDS video.  A girl; Leah, from the 5 Awesome Potsies (link to the left) asked everyone to show how crazy our joints can get.  I’ve never been diagnosed or anything, but I knew I could do a lot of the double jointed stuff, so figured I’d show you my reply to her video… if I can figure it out he he.

Take care everyone 🙂

Ash,

Confusing Computer Usage

Hey everyone 🙂  I was so sick of how slow my computer has been since having to use it again bc my laptop monitor went out.  Today I had a weird idea, and now I’m using my laptop with my desktop monitor lol.

Love for all suffering with Cancer & Crohn's & Colitis xo

I got approved with Cheshire Homes!!!  I’m so happy 🙂  I will have a PSW come into my home Wed. & Fri.’s for an hour, and she will do some basic cooking and food prep for me while I have a bath.  It’s so nice to know that’s two days I won’t have to worry about having someone come down and help me out.  Right now I’m basically only eating dinner.  I can crawl to the kitchen to get a drink or something to eat that’s already made, but I can’t do the prep part and cooking.  By around dinner I’m able to stand up and get myself something, even if it ends up being soup or something simple.  The crappy thing about it, is that my POTS  is ten times worse when I don’t eat properly and have veggies, fruit, etc.  so it wears me down even more.  Kind of a double barrel shotgun.

I went to my mom’s last night and stayed over night.  I wasn’t going to bc I haven’t been falling asleep until around 6am, but I decided at the last minute to anyway, and I actually was asleep by 3am!!!  I missed sleeping with my Zeusy though 🙂  I’m glad to be home with him.  I was supposed to go to my mom’s townhouse with her today and help doing the trim again, but I am too scared to push it again right now.  I felt horrible from the last time, and I’m still not back from it yet.  So my mom & I went to the vets &  picked up cat food (almost passed out there) and then she brought me home.

This Monday I meet my PSW Marlene & next Monday I have my dietitian appointment.  I don’t think she will be impressed with my one meal a day thing lol.  I think it’s impossible to get ALL the nutrients that our bodies need, but I still want to be eating at least 2 regular meals a day bc I’m too nauseated in the morning to eat a huge breakfast.  I usually just have a banana or something somewhat filling.

Alright now I just feel like I’m blabbering lol so I’m going to scat.  Have a great Mother’s Day everyone!

Ash,

PS If you’re near Deseronto, ON make sure to hit up the Boob Brigade Yard Sale, where all the profits go to breast cancer research!  AND the M&M Meats Crohn’s & Colitis BBQ happening on Saturday 10am-4pm all across Canada!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Only $2 and you get a hot dog or hamburger, a bag of chips, and a drink!  All the proceeds go to the CCFC (Crohn’s & Colitis Foundation of Canada) to help a debilitating disease that has NO CURE!  I’ll be there!

*myself, my sister, and two other family members has Crohn’s Disease, as well as other family friends*

Done All Phone Calls

So I’ve finally given everyone I’m supposed to calls back… now onto the e-mails I forgot about, doh!

My mom came over yesterday and helped out a bit, and I finally got Zeus’ litter box done by myself woo hoo… almost passed out lol but it’s done!

I think it’s weird that ODSP doesn’t help with student loans.  I make only enough each month to pay half of my loan and it’s going up in the fall… so my dad is forced as my co-signer to help me pay it!  I don’t think that’s right.  The whole idea is for disabled people to get help when they aren’t well enough to work.  I would love to work and make up the difference even if I could, but most of my days are spent sick in bed or on the couch!  Not fair to my dad.

They don’t even help with the coverage for my bed wedge.  You have to apply through the well fare office instead for it, which is totally bizarre to me.  I’m not their client, I’m ODSP’s client, so why should they be the ones I go to for help with medical home equipment?  Yet another thing I’ll have to go do now when I feel like crap.

I also called my Cardiologist and he sent through both of the referrals (yay!) I was hoping to get a rehabilitation team in Belleville since Kingston is almost 2 hrs away, but they don’t have one here weirdly enough lol, but that’s fine. It was worth the shot.

Now I have to get working on gathering all of my info. for my portfolio for class so I can finish it, and then email school and faculty about me applying for the scholarship.  Then send it out, and hope for the best!  I could really use the money for classes since other wise I don’t get to go!

Hope you all are well.  Take care as always.

Ash,