Rainy Fall

Just finishing up watching CSI and waiting for Grey’s Anatomy & Private Practice.

Today the guys from Shopper’s Home Health Care and the personal support worker intake girl came over and I got my new walker!  I have to apply online when the guy sends the quote for the grab bars, but that’s cool.  For the walker, I chose metallic blue lol  and it’s tall enough for me to possibly do dishes and cook, but still short enough that my feet or firm on the ground and the blood won’t pool down my legs like they do on the bar stool.  It’s cute.. for a walker LOL.

Afterward, Amanda picked me up to take me to get the recumbent bike, but the guy lives out of town so now he’s going to drop it off within the next couple weeks, when he can get his truck from his dad.  I can’t wait to get it!!!

So Amanda and I went to The Dollar Store, and got some Halloween decorations and picked up some stuff I needed since I wasn’t well enough to go grocery shopping.  Mom works tomorrow, so if she’s well enough, we may go after she gets off around dinner… which would be nice bc I have carrots and soup lol.

So Amanda, Nick and I hung out and I got tons of photos.  I napped for a while and was so dizzy when I got back everyone came upstairs and hung out while I laid in my mom’s bed feeling like I was going to raulph lol.  Was fun though 🙂

Then mom and I went out to the store, and came back here with subs and relaxed for a bit before she left to go to the nursing home.  My Gramps has fallen twice getting out of bed the last few days, and apparently he is going down hill fast.  My Grams was really teary about it today, I felt so bad for her.  My mom was going by to see for herself how he was doing, but he has a chest infection, so unless absolutely necessary, Amanda and I can’t go see him in case we catch it with out crap immune systems 😦

Tomorrow, Grams is taking me to see my Cardiologist.   The only way I was able to make the whole 2 months.. which felt like years on Bisoprolol, was bc my resistance to medications set in, and it stopped working.  Woo hoo! Lol never been so happy to see it stop working.  So he’ll probably try me on a new medication, and I’m going to ask about trying Florinef.

I’m back home now and chilling with my man Zeus.  It’s been raining a lot lately which is weird for Belleville.  It never stays long, but it’s been crazy all day.  But it’s supposed to be back to sunny tomorrow!

Alright, going to head out!  Will write more after my appointment tomorrow!

Ash,

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OT Assessment???

I have no idea if that’s what it’s even called… but I think that’s what I was referred to have lol.  Long before Marlene came (my PSW ie. personal support worker), they obviously came to my apartment and checked to see what I needed help with.  They even went around my apartment just to make sure it was safe for Marlene to come.  (no open wires, etc.).  But they never talked to me about aides that I could get for around the home.  My SSW (social service worker) was mad when she found out and got another referral for them to do that for me.

So the girl came this morning, and I showed her my routines and the things I had problems with, and stuff I just couldn’t do, and she is going to have me bug my dad to make a wedge for under my bed, to raise the head of it for me so I can use my bed wedge pillow for my feet or when I’m up and can lean back on my couch (blood pressure drops low when I lay flat).  As well, she is going to get me fitted for a walker next week, and get me some grab bars for the walls of the shower, for when I get in and out.  I am only going to get the suction cupped ones for now until I find a more permanent spot.  I haven’t found an apartment yet,  but I’ll be moving as soon as I do, so there’s no point in getting installation ones until I do.

I’m really excited about this, bc I’ve been needing this stuff for a while now, and nothing wrong with having some things to make pots life easier!!!  I thought it was really cool that she went online and researched pots to learn how it affects the body.  She actually has Vasovagal Syncope so she understands the whole fainting issue thankfully lol.  So if she can get an appointment, she’s going to try to have me fitted for a walker next Thursday morning around 9am before I go through my going grocery shopping fiasco. Then it’s off to get my recumbent bike and then the cardiologist on Friday!

I’ve wrecked my knee once again.  Both are hurting, but the bad one is intolerable sometimes.  I do have sports knee braces from when it got bad the last time I was really run down, but since it was before I lived here… I don’t know what I did with the damn things!  I tore my apartment apart looking for them, and think I made it worse lol.  At least I found my tensor bandage, which is better than nothing!!

Will write more next week! xo!

Ash,

Cardiology Apt., MVP, Sick Family, etc.

I wasn’t planning on writing for a while, but some more news has popped up and kind of felt the need to vent a little.

I had fun yesterday, but I spent a lot of the time upstairs in my mom’s room resting bc it got so hot outside where we were all sitting, that I needed to be in the coolness.  I felt pretty good, just very weak and have been having bad headaches.

Today has been worse.  I can’t seem to sit up for very long without the room spinning.  Not too sure why, but hopefully it’s now going away.  I got a call from the cardiologist, and I am going in for October 1st for my check up with Bisoprolol.  I wonder what he will do, especially now that my resistance to it has kicked in.  Surprisingly what I’ve gone through the last couple days,  I have actually felt better nausea wise, and orthostatic intolerance since the beta blocker has stopped working.  So hopefully he will try me on something else.

I called them about the blood work to recheck to cholesterol, but I had to leave a msg. on his secretary’s machine bc she wasn’t there or busy, and I haven’t heard back yet, so I will have to recheck when I’m there.

My mom goes back to work tomorrow.  She’s a little worried it’s too soon, but seems happy to get back there too.  Hopefully it won’t wear her out.   She is starting off with only 12 hours a week so that’s good.  I don’t think she’ll be able to take me to the cardiologists now though.

She was very sweet and brought me two big pieces of vegetarian lasagna my sister made (sooo good.  I love her cooking) and went and grabbed Zeus‘ food for me since I was having a hard time sitting up.  She also picked up the med.s I needed too.  My dad also called to check up on me today, to see how I was doing after being there.  It’s weird to have him be like that with me bc all along he didn’t really understand the whole of the situation… but it’s really nice for a change.  It’s made me very happy and hopeful.

My uncle Larry is diabetic and has had heart problems.  Not full up on the situation, but I know he’s a bigger guy and had a hard time exercising and eating well.  I found out while I was at dad’s I think, that he is in the hospital now undergoing dialysis a couple times a week.  My sister finally got a hold of my aunt Reta (his wife) at the hospital, since no one can go in to see him, and I guess things aren’t looking very good for him.  I’m really worried about their kid Kayla (well she’s 29 lol) bc I love her so much, and know how close she is to her parents.

I get paid next Thursday (woo hoo grocery day lol) and I’ll hopefully be getting the recumbent bike then as well.  Friday I’ll be in Kingston for the appointment, but I have nothing else going this week.

Anyway the spins, chest pain and hot spells are starting again so I’m going to go to bed and try to sleep.  I’ll write again after the first.

Ash, *hugs*

Ahh Good Times

Nick & Emma

I had a REALLY good time at my dad’s.  My dad was ridiculously good with me, and so careful about everything we did.  Nick ended up staying the night too, and he wouldn’t let me pick him up, or walk too far, do the dishes, etc.  I tried doing the dishes anyway, but only got a few plate and mugs in and had to stop.  It was actually nice to be treated like that in a way bc it showed he was paying attention to my illness and not forgetting like everyone seems to normally do.

My dad was talking to my uncle Scottie who actually knows a woman in Scotland who has POTS.  She is in her 50’s my dad said, and supposedly her POTS is cleared up enough now that she can actually work!  I would love that.  I know our lives will never be what they were, but if I was well enough to be able to be independent, cook, walk to catch the bus, and clean my place… that would be wikid, let alone being able to work!  He is going to see if my uncle Scottie has her number or e-mail address so I can get a hold of her.  It’s nice to see people who actually get better, since it seems to never happen.

Sarah

There were friends of the family over, and it was nice to see them 🙂  My dad showed me his new rock room.  He collects rocks and minerals.  And we had a nice dinner.  Lois worked late, so I didn’t get to really see her until the morning.  Today, we got Amanda at her house, and we all went to lunch at Montanna’s here in Belleville, and then they took me home.  Nicholas was hilarious and had us all roaring.  He was really well behaved too.

I actually felt the best I had in a long time yesterday.  I was able to do a little more standing than usual, the stairs still sent my heart rate soaring, but for the most part I was good until bed time when I have the worst of my hot spells.  I had a hard time getting to sleep, but once I was I slept right through and was up before Nick hehe.

I haven’t done a whole lot, but read and watched tv and movies since I got home.  I am very tired out and weak today, but not as bad as I could be, so no complaints.  Sorry to all for not being very sociable lately, just not totally back from the last set back yet.

Not much is going on this week.  I may go up to my mom’s tomorrow to see her.  Depends how I’m feeling.  Outside of my PSW coming I don’t think there’s anything going on.  My memory is so terrible lately, I don’t remember half the things people tell me.

Lauren

I’m watching the Machinist and omg I’m so lost!  He doesn’t sleep and starts seeing stuff…. I don’t know lol.  I’ll have to watch it again and actually pay attention to it all so I know what’s going on lol.

Alright, I’ll write more another time when more goes on.  Hope you’re all well 🙂

Ash,

The Weekend Is Here!

Finally have food!  Well not much, but at least I have fruit and veggies.  Not sure if I’m going to do the box thing anymore.  Half the things I give to my mom, bc I either can’t eat it, or really don’t like it.  Like the spaghetti sauce… with hamburger lol. Lots of good things, but I think I could just get them on my own and still have some left over, so I doubt I’ll do it next month.  I did enjoy the mystery squash picture conversations… and plan to try the recipes even though it doesn’t look very good lol.

I went over my blood work results with Susan yesterday, and everything seems fine, but my B12 which is not unusual, and my cholesterol.  She was looking at the blood work from my physical and on there, it said my cholesterol was fine.  So one of them was a mess up.  We’ll see when we get the third back from the hospital.

So I am having another OT assessment done with a nurse to see what I should get for around the apartment for supports.  I have a cane and a bath chair.  I gave the walker back to my mom bc it was causing me more grief than good bc it was too short for me even heightened.  But if I get the referral for them through this place, hopefully disability will cover it.

As well, Susan is working on getting me a YMCA membership for only $20 a year!  That would be amazing.  Then I could swim 🙂 and once I was built back up, I’d have the gym equipment to use too.  She was a swimming instructor for seniors before, so she’s going to show me some techniques for dealing with pain.  As well as still working on getting me a deal with Meals on Wheels.  That would be such a stress off my back you have no idea.  Most POTS patients still live with their parents, or are married, and have a family to help.  My family is great, but since I don’t live with anyone, eating just doesn’t happen on the days I’m sick bc I’m feeling too awful to cook.  So at least this way, they’d be healthy meals,  I can just pop in the oven and that’s it.  The thing that makes it expensive, is they only do dinner, so I’d still have to come up with breakfast, snacks and lunches.  And the amount for it now, is more than I pay for 3 meals a day all month long.  The joys of being broke lol.

Zeus woke me up very cutely this morning.  I was laying on my side, kinda of slouched into my stomach, and he climbed on top of my shoulders and laid down.  I petted him for a bit, and then was trying to go back to sleep when he started leaning over to put his face in mine.  When I ignored it, he took his paws and reached around my face and was pulling on my nose to get me to look at him lol.  It was too adorable I had to get up then.

Still looking for an apartment.  Elephant asses upstairs now have a big dog.  Not sure if he’s theirs, or looking after him, but I think by the sounds of it, they put him in a cage over night and all night long he scratches and jumps and fights to get out of it, and if I’m awake when it starts… I don’t sleep until they get up the next morning.  Let me explain, this couple is older, and they are both fully deaf, so I understand that they don’t realize just how loud they are, but come on now, when you’re jumping around, slamming doors, walking with shoes on… and 3am or later, they must notice the possibility of it being an issue with the person below them.  I’ve even complained but the stupid rental company does nothing about it, so I want to get out of here asap so I can sleep lol.

Yesterday, I went with my mom to her doctor‘s appointment and it rained ALL day long here.  It’s only going to be a high of 17 today!  That’s awesome 🙂  When Nick gets out of school today, him, Amanda and I are driving out to my dad’s place, and I’m going to spend the night there.  I haven’t stayed over for a while, and they wanted me to stay the whole weekend, but it’s such a pain coming home and dealing with a cat who’s been alone the whole time lol.  Not going to do it, so they’re taking me home Saturday.

My grandpa tripped at the nursing home the other day, and he was not responding to the nurses at first, so my mom and grams rushed over there, and got him talking and settled down.  We found out he had a mini stroke :(.  I’m worried about him, but he is doing better now, just very scary.

I talked to my physical therapist and nurse the other day, and they agreed that I should work on my own from home until I’m built up enough to come.  She mentioned how  the cardiologist didn’t want my heart rate going up to 150bpm and then said, mine wasn’t though it was 147 lol.  Okay, I think that’s close enough.  It was still obviously too much.  And then she mentioned me walking still how 30 minutes was too much, that I should do 3 ten minute walks.  Dumb ass.  I walk to the kitchen and it exhausts me.

On a good note, my mom is going to try going back to work soon.  She is going to start off with less hours, and do more paper work than heavy lifting and doing stuff on the floor.  She’s a Operations Supervisor for Value Village.  So she runs the head of the part of the store that customers are in.  I hope it isn’t too much for her, but it’s exciting to see her wanting to do it.

Anyway it’s 9am and I’ve been up 4 hrs and am now exhausted so I need a nap before Marlene (my PSW) gets here.

Have a great weekend everyone 🙂 *hugs*

Ash,

Sinus Tachycardia

Alright, so I haven’t written because I wanted to wait until my doctor’s appointment today.  The sleep study results weren’t in, and the hospital where I had my cholesterol double checked, didn’t bother to send the findings to my family doctor!  So my GP asked me to call cardiology tomorrow, and have the send the results to her.  She believes its hereditary too.

What Zeus does after I'm home & he gets my purse to himself lol

I did get the tilt table test results in.  It’s been almost a year since I had it done, so I know I have POTS, but since being diagnosed, I learned there was more than one type… and I had no idea which type I had.  I was hoping the blood work taken during the tilt test would’ve came with the results page, but nope.  But it says on the page that I have Sinus Tachycardia, and that is what’s causing my heart to do it’s POTS thing so easily.  I have a sinus node dysfunction, in easy terms, it makes my heart go way too high.  I made a page on here explaining it more in detail, what the doctors are looking for to diagnose it, and what they do.  I also created a page for Mitral Valve Prolapse.  It gets pretty indepth so if you have any questions, just feel free to ask.

My Social Worker Susan, who is also a nurse, asked me last week, to get a copy of my last two blood works done.  Obviously my latest one wasn’t there like I mentioned, but my GP got me the two before that for now.

My tilt table test did show a need for increased salt intake… Zeus is sleeping on my purse since I set it down and I don’t want to move the dear soul bc he looks so comfy.  But all the basic crap that comes with POTS was mentioned to make it short lol.  One good thing, even though my blood pressure was low, it didn’t change when I was in the upright position.  I noticed that one night here when I was cooking and I got shaking so badly my legs felt like they were about to let go, and I checked my HR and BP and the BP was normal.

More beautiful work commemorating 9/11, by Devious Designs

Anyway, besides that, I’ve been in a lot of pain still, and very tired, but the nausea seems to subside until the night time.  Then it’s time for bed bc I hate it lol.  My heart rate upon standing and walking around my apartment, but not doing anything else, is on average about 135bpm, if I am doing anything else, like talking, picking up a book, something trivial it hits around the 150bpm mark, so Mr. Cardiologist better be ready to try the next Beta Blocker.  I would like to try Florinef since another sinus potsy I know has had great results with it.  I know to each is their own, but I would like to give it a go.  I noticed that he put me on Bisoprolol bc it’s the best one to take with Asthma, and if the other ones make my asthma any worse, I may be living with my inhaler in my mouth lol.   I’m excited to see the allergist about that and many other things I think could be caused mostly by allergies, and see what he suggests may help.

Another cool thing regarding my past post where I mentioned wanting to buy this recumbent exercise bike for $80, I found another one right in Belleville this time for only $25, and he’s willing to hold it for me until I get paid, which is awesome.  It’s a CCM which he bought off someone for $25 and never used once lol, so he just wants back what he paid for it, which still saves me about $60, let alone the money I save not buying a brand new one which just would never happen lol.  It would take me a year at least to come up with $300 or more for one lol.

I love this bc I had a black cat, and this painting hangs in my dining room (picture is not by me was sent in a forward)

Alright, I’m now reading, “One Fifth Avenue,”  by Candace Bushnell, who wrote, “Sex and the City” and “Lipstick Jungle.”  This one is basically about all the stories of these rich people who live in an old fancy, rich apartment building… on you guessed it, One Fifth Avenue.  It actually isn’t too bad so far.  I hated the book, “Sex and the City” and loved “Lipstick Jungle” so I figure it’ll probably be at least half ass good lol.

Also in my previous post when mentioning the sleep clinic, I mentioned grinding my teeth like a crazy person, but a mouth guard isn’t covered by disability, so I figured I was stuck since they were expensive.  My SSW/nurse might be able to find rep.s who help with one time payments for things people need and can’t afford, to actually pay for it for me!  So I have to call my dentist tomorrow and get them to fax her over a quote of what they figure everything will cost and she’ll take it to the board for me 🙂  It would be a big help in helping my horrible teeth.  I do everything I’m supposed to and yet the don’t stay cavity free, etc. bc of my med.s and my health issues.

Anyway, going to head out and get the garbage ready to go out.  Hope you’re all doing better too 🙂

*hugs* Ash,

Sleep Clinic

I don’t normally start my posts off with searches people make, bc generally they are pretty much what I put in my posts, so they usually make sense.  But there was a  good one yesterday:

“Is Ash throwing grains of rice outside of the house?”  –  um no… no I wasn’t.  Isn’t that illegal here now?  Poor pooping pigeons!

I hope you all got to see the Season 2 Premier of Doctor Oz yesterday, if not I posted a few of the really interesting bits below.  Doctor Oz, bc he turned 50 in June, decided to be smart and have his first Colonscopy.  He took the cameras with him so you got to see the preparation the night before, and then during the test.  I was laughing at him drinking the prep. for the scope bc they are SO AWFUL lol.  But it was scary bc they did find a pullip inside him that could have turned cancerous if he hadn’t gotten it checked and removed.  So many deaths can be saved by having an annual check up, and people just don’t bother.  I’m for this of course bc I have Crohn’s Disease.  The actual test I was TERRIFIED for and it’s nothing!  The worst part is going to the washroom a lot and then not being able to eat lol.

I wasn’t supposed to have my sleep test until the end of October, but I got a call from them last night at 8pm bc they got a cancellation and I was able to come in.  I was more afraid it would be one of my normal nights of not sleeping, and had I been home, I’m sure I would’ve given up and just got out of bed, but I was finally able to sleep.

I got electrodes put all through my hair (which is now full of glue) and on my chin, under my eyes, had a thing put in my nose to check for when or if I stopped breathing, more electrodes on my legs, and neck, etc.  And a heart monitor clip on the end of my finger, and two straps around my chest and stomach.

The lady who did mine was so sweet and motherly.  If I woke in the night to grab my blanket bc I was cold, she’d run right in and tuck me in lol.  It was funny.  She said I slept horribly, moved and jerked my legs a lot, and grinded my teeth like mad.  As unresting of a sleep it was, I was happy bc it seemed like everything that happens to keep me from sleeping well happened!  So if there is anything, I’m sure it will be picked up.

My mom and Grams picked me up this morning around 6am and brought me home to my Zeus not too long ago.  Normally he is at the door screaming as soon as he hears my key, but today he was zonked out in his cat carrier, so I had to go to him to give him lots of loving lol.  I’m sure I’ll pay for not being around later today when he gets up.

So I found a recumbent bike just like the one in the physical therapy class, for sale for only $80!  The guy bought it, and never used it barely, and needed the money more so it worked perfect for me bc everywhere else was ridiculously  priced, even the used ones.  He was even willing to bring it into Belleville to me!  Then I find out that $80 I thought I had, was only $60, and I realized when I double checked, that I won’t be getting a GST or HST check this month so I had to turn it down 😦  I’m going to email him on the 29th when I get paid again and try again, and HOPEFULLY no one has bought it by then.  I really want this bc it’s an exercise I can do at home, that’s good for pots, and I’m close to the ground just in case.  I could use it watching TV, etc.  My elliptical trainer which I love is not usable right now unfortunately.

I was thinking that the two months of being Bisoprolol would be up soon.  (That’s how long the Cardiologist wanted me to be on it before switching to anything else)  so I decided to double check where I wrote the day of that appointment.  It was only a month yesterday!  Makes me want to scream bc I wanted to make it to 2 months, but with me feeling so awful, I know I won’t be waiting that long.

Anyway, going to try my love bug’s idea of using dish soap to get this crap out of my hair and then rest for a bit before my PSW comes.