Dietitian

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Thankfully the dietitian that came to the house yesterday was NOT the one from before, that I went and saw in the hospital here last year.  I really like this one!  She’s really passionate which is always nice to see from someone in their job, and it was cool that she could come here and look right in my cupboards and see what I am actually eating!

So I didn’t learn anything new about crohn’s and the diet for it.  I wasn’t overally surprised there though.  She was good about helping me find more salty foods and fiber foods, and also foods that are great alternatives for people with high cholesterol.  She said though, that with everything I had, I am doing everything right.  Which is good bc who likes changing up what they already have, but that means my high cholesterol must be hereditary.  She said it would make no sense otherwise.  What my plan is then, is to get it checked AGAIN with blood work since it’s been almost a year since it was last checked, then if it is still high, have the dietitian write me a note or something to bring with me to the Cardiologist saying I’m doing everything right on my end and it’s still high.  And bring the blood work results with me.  I know my bad cholesterol is WAY TOO HIGH, but my good cholesterol is too, and I know that can kind of balance each other out.  But I still think they need to be within a normal range.  I feel like if it isn’t to do with POTS and the heart, my Cardiologist wants nothing to do with it.  Maybe not, but I don’t want to be 28 and at a risk for a heart attack either.

Sunday, mom, Nick and I went to the cat show here!  It was obviously nothing like the big cat shows on tv bc it’s a small town, but it was cute!  It was more fun just walking around and looking at all the different breeds.  Nick was able to pet a few of them too, and it was totally adorable watching him be so gentle with them.  I love cats! hehe.  I think my favorite was the Maine Coon or the Scottish Folds.  Then we went and had lunch at Dairy Queen.  It was a fun afternoon

Anyways, my PSW is coming early  this week, and coming this morning, instead of later in the week, so I’m going to go have my breakfast before she gets here.  Hope you’re all doing well!

*hugs*

Ash,

PS  Did you remember June 6th (yesterday) was Invisible Illness Awareness Day?

Crohn’s Disease Update

I’m feeling much better now and actually liking this weather!  Err kinda lol.  I detest humidity… horrible stuff, but when it’s not humid out, the heat isn’t bothering me like it did last year.  Mind you, this is only the beginning of June!  But I’m wearing SPF 60 and still burning!  Maybe bc I have to take 1000 mg or IU’s or whatever of vitamin D.

Well I’m slowly packing for my move.  Last time… a whole couple months ago lol I had more problems with my Crohn’s Disease, than I did with POTS which surprised me.  So this time, I am being really careful since I obviously just had a flare.  Doing it when I’m well enough, and stopping even before I begin to feel too horrible.  I just need to be able to do something with this move, and even though I will have tons of help to even pack if I need, I still can’t stand the thoughts of not doing SOMETHING when I can.

I got a call from the Access Center, and Monday a dietitian is coming here and helping me figure out what would work best for me crohn’s and pots wise.  I know a lot of it is just common sense mixed in with a lot of salt for pots, but whatever I can learn why not?  Maybe she can give me some tips on cholesterol, and heart burn too.  We’ll see… not sure if it’s the same woman I went to the hospital last year to see (aka waste of my time lol)

Next Friday, I go to Kingston, and see my G.I.’s about how I am doing since the flare.  I am better, but still not up to par.  Or at least not in comparison to how I was after my last flare… mind you I was so much more healthy then.  I will be finding out what my medicine is going to be for when my Prednisone is finally done in July.

After I get out of there… and hopefully in decent time too, I go down and see my Cardiologist for the first time in almost 6 months!  Grrr lol.  This whole Bisoprolol medication that doesn’t work crap is finally on my last nerve.  I am going to ask him to switch.  Enough is enough!  I also want to talk to him about other symptoms besides just the heart rate and blood pressure.  I know that certainly worsens symptoms easily, but what about all the other stuff like heat intolerance, shakes, dizziness, etc.  See what he suggests I do, or whom I should go see.

On Wed. I think it was, I went with Grams, Amanda and Nick to his first soccer game.  Last year was adorable bc they just played around and learned the basics, but this year he is actually playing.  It was fun to watch them!  I hope I get to go to more games this year than last!

Tomorrow, my mom’s taking me out to get my groceries.  I have just finished reading Bethenny Frankle’s cook book.  I absolutely love it.  It’s nothing fancy, but teaches you the basic need to knows about experimenting yourself in the kitchen.  I was never taught anything but the basics, so I know nothing about herbs and spices, etc.  And I love this book bc it shows you all that, with just regular, yummy foods, you already have in your fridge.  Can’t wait to start experimenting more!

Anyway, going to head out, I couldn’t sleep and decided to update you all to let you know everything is going steady and good right now I hope you’re all doing well too despite all the crazy back and fourth weather a lot of you are having!  Will write more next week after my appointments.

Ash,

Cardiology Appt. & Halloween!… well it will be in a month!

I had totally forgotten about decorating for Halloween this year.  I know… it’s only October 1st, but it never crossed my mind, and it’s my funnest holiday to decorate!  So when I got home today, I was putting away some of The Dollar Store stuff I got and decided to throw my Halloween table cloth on, and then I just decorated the whole shabang bc I could lol.  I got my skulls and black roses wreath hung outside my door, a ghost wall decoration my mom gave me, my bloody hands, spiders, and skulls on the windows, and my two electric pumpkin up and lit.  I love carving real pumpkins, but since I have no where to place it here, I bought two plug in Jack O Lanterns to have .  If I had a house, or front yard, and some cash… omg I’d go crazy if I could lol.  There’s so many cool things out there to get for it!  I don’t get any kids here either, so I just decorate for me .

Last night I went to bed around 11:30pm so I’d have a decent sleep bc I had to get up around 7am this morning… hot spells, nausea, dehydration started, and I wound up being awake until 6am!!!  I was so out of it, I fell asleep in the van on the way home… (Grams was driving not me! lol).

I went to my Cardiologist appointment today.  I told him how I thought it was my resistance kicking in bc I didn’t have the nasty side effects I had for a month and a half prior from the beta blocker (Bisoprolol) and my heart rate was kicking back around the 130-150 bpm when I was just doing simple things.  But he being as stubborn as I am noticed that I am on Symbicort for my asthma, and had started it around the time I was given Bisoprolol from him.. and he thinks that bc part of the inhaler causes the heart rate to speed up, that, that’s why I was feeling so sick.  SO I am still on the damn medication, and I am going off my inhaler to see if that’s what it was.  I will see him in the beginning of November to see if that did anything for me.  It would be amazing if he was right… though I don’t think he is to be honest bc I was on other inhalers before and I didn’t feel like that.  But we’ll see   Just a month, so not too bad.

I was cool about it in the room with him, and understood where he was coming from, but then got out and started to get really upset.  Not mad, but sad that it’s another month on top of all the time I’ve spent so sick, just wasting away.  But since I had the sleep on the way home, I feel okay about it now.  Another potsy told me she is going through the same thing with her inhalers, so I’m settling in to being more open minded about it… I’m still right though LOL.

Anyway, 1 hours sleep and a 1 hour nap is not enough, so I’m going to lay down again until my mom gets off work, and depending on how she is feeling, and me when I get up, then I may get to go grocery shopping!  So excited to snack on something other than carrots… mmm carrots lol still good stuff though lol.

Alright have a great weekend everyone!  *big hugs*

Ash,

PS OH!  My cholesterol is high!  But he said bc my good cholesterol is SO good he doesn’t think I will need med.s

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*

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,

Monday’s Cardiology Appointment

It’s taken me a while to write this entry bc I still am not back to me yet, over a week later, but I can feel the nausea and pain subsiding finally!

The weather is back to horribly hot.  From what I’ve heard, it will be around 40 by the end of the week, but it feels like that now lol.  The heat is NOT making me feel any better, or any of you other potsies.

I went to the Cardiologist on Monday morning with my mom and grandma.  I fasted the night before, in case he wanted to redo my blood work over, and he did, so I should have the results by the time I see my family doctor on the 14th.

I told him what my heart rate was exercising, and what everything was that they physio therapists had me do, and he agreed that it was way too much, but also wanted me to keep at it, since exercise is so imperative to any sort of recovery with POTS.  So between him and I, we agreed that I would still walk, and only walk 20 minutes until I knew I was well enough to do more.  Not any time soon, but to build myself up as I felt well enough, to an hour a day.  But he doesn’t want my mitro valve prolapse to kick in, so to do it in 3, 20 min. sessions.  I agree, as annoying as it will be, I think that will be the smart way to do it too so I don’t pass out on my walks.

I thought my heart rate was normal, but apparently it’s still high, but since it’s not too bad, he doesn’t want to jeopardize my blood pressure any more by adding to my dose, so he’s going to keep me on the dose of Bisoprolol I am on now, and see how it goes.  I still want to get autonomic testing done though, but figure the Neurologist will be more the one to do those when I see him in March.

My Cardiologist also wants me to continue with the physical rehabilitation program, but instead of getting my heart rate up to 150bpm, only allow it to go to 120bpm.  We wear heart rate watches so we can see where we’re at as we are going.  And to also sit down at the warm up session since it’s mostly arm exercises, and then that won’t set my heart rate up as much either.  But I will still do the walking afterward as the warm down, bc my heart rate has to be at a good level before I go, and not mess up the nerves in my heart even more by just stopping without bringing it down slowly.

Sorry if this entry is kind of confusing, but I’m so out of it I can’t get my thoughts out properly lol.

I went to my mom’s on Monday and spent most the day outside with Amanda and Nick, and our neighbor and their kids.

I’ve started looking for an apartment on my own, since as with before, the counselor for it hasn’t been looking for me, but I’ve been worried and having to be really picky about where, and what kind of place I live in, bc of my health and the limitations.  My sis thought she could be a big help to me if her and nick and I got a place together, and I know realistically I should NOT be living on my own.  She worries and bc she is my sis, is willing to make sure I get meals every day, and if I couldn’t clean, she wouldn’t care, bc she knows what it’s like to be sick, and she knows a lot about my illness, so she wouldn’t judge like any normal roommate would.  My sis is probably the person I’m closest with, and I adore Nick and wouldn’t mind living with them, but I’m so independent I want to live on my own.  I love the idea of having my own place and being able to do it on my own.  I’m thinking about it, but I know I’ll probably whined up on my own whether I should or not.

I was going to go to exercise yesterday at the hospital, bc he only wanted me in once a week instead of twice, and also I had to get the list of exercises for me to do at home, since I’m doing most of it long distance, but I was so sick I barely left the couch all day.  I forced myself to go to the store with my mom, and I was so sick to my stomach, that I had to sleep after I got back.  Then found out later, that I can’t go Thursday now bc my mom has her doctor’s appointment in another town.  I’ve been trying to call them at the heart center but the hospital’s number won’t pick up for some reason for me to put in the extension.  It just keeps ringing, it’s weird.  My sis has been calling too to make an appointment with our Crohn’s Disease specialists G. I.’s but she can’t get through either.  I’m thinking of asking them if I can just start with the next program then since I’m missing so much.

My sis noticed a big lump inside my mom’s dog, Winnie’s mouth.  I looked at it the last time I was there, and it’s not broken, scratched, or open.  It looks completely fine, which is weird to me.  My mom called the vet, and they are pretty sure she has cancer   She is so old, and it isn’t bothering her at all when she eats or drinks, so the vet said it wouldn’t be worth putting her through the surgery and to just let her be comfortable.  I felt so bad for my mom bc she is so close with her, and has been such a blessing for my mom, but I agreed with her decision.  My mom got her when she moved out after my parent’s split up, and since been with her through work, and stress and health problems, so she’ll be lost without Winnie.  Thankfully she still has the kittens to be with her   She came in yesterday, she picked Zeus up (and trust me it’s not easy to do at his size lol) and they snuggled together, it was cute.  I’m glad he likes her so much, bc he doesn’t let anyone but her and me pick him up.  Animals know when we need love though, they seem to sense when something is wrong.  When I was in bed or the couch all last week, he’d sit there and cuddle with me and take my mind off of how crappy I felt.

My mom was a sweety yesterday.  She knew I couldn’t go to the rehab clinic, so she took my grocery list, and picked up what I needed to get bc my place was almost as empty as it was when I first moved here lol.  I’m so glad to have snack food, and G2 and Gatorade drinks here.  They help soooo much!

I went through with my mom, and with looking on websites at all my food to see what I could get with little to no cholesterol in it… and almost everything I eat has ZERO cholesterol in it!!!  I mean, it’s a relief bc I hate putting my Crohn’s through the grief of diet changes when it is finally getting settled after my last food change, but what do I do then? Lol.  My great friend Julie said it is definitely inherited through other members of her family, and since my dad has it… I’d say that’s got to be the only possible way I could have it!  Damn DNA!!! LOL.  But the cardiologist didn’t put me on any med.s for it.  If the results are in by the time I see my GP, then she will probably decide then what should be done.

I finished reading L A Candy, but Lauren Conrad, only to find that the damn book is missing the last few pages!!!  The library JUST got it a few months ago, and someone ripped out the very ending!  So I don’t know what happens! BOOO!  It wasn’t that great of a book, but if you read over 300 pages, you like to know how it ends at least lol.

I’m not reading another Charlaine Harris novel, Shakespeare’s Counselor.  She’s been my fave. author for years now, so I know I’ll like it.  I haven’t read one by her yet, that I haven’t.  Which reminds me since she writes the books the show True Blood is based off, I need to catch up on the last few episodes.  I’ve been in too much pain to sit in my comp. chair to watch them, and I don’t get the station it comes on, so I need to force myself to see em finally!

Today I went over and dropped off the payment for my food box of veggies, fruit, bread, etc. for mid way through the month.  I LOVE getting fresh stuff bc that’s right around when my normal groceries start to wane.

Alright, gonna head out and pester my Zeus for some loving

Ash,