Surprise Needles and Nerve Shocks

My Social Service Worker Susan took me to my Neurologist appointment yesterday.  I had no idea what was going to happen, and was just figuring a consult since I wasn’t told any differently… boy was I wrong!

Zeus cuddling on the new blanket I knit him

I had electrodes attached from my feet to my thighs, and from my hands to my upper arms, and was given shocks starting from a low shock to a higher one, to see if my nerves were damaged at all.  It was painful!  I hate shocks.  To me it’s like nails on a chalkboard so it wasn’t easy, but I’ve had worse.

Then the Neurologist stuck me with needles with mini electrodes  on the ends all up and down my legs and feet to check the nerves that way.  That was easy to handle.  Not that painful.

The resident, got literally a safety pin and poked me on each side of my body continually from my toes to me forehead asking me which side hurt more.  That was very annoying lol and definitely not comfortable!

The Neuro is going through all my case files with all of my other diseases, and meeting with all of the specialists for them to figure out a plan, based on the nerve conductivity test, the blood work he took (supine, then standing 10 minutes!) and another 24/hr urine test and a 24/hr blood pressure test.

It’s really cool to see a doctor so on the ball about this and wanting to work with my other doctors to see how my other health problems may be related.  Should be interesting to see how it turns out

I go back in 3 months time to discuss the next step once all my results are in!  He will also be telling me if I for sure have Mitral Valve Prolapse or not.

My Gram’s sister died the day before yesterday tomorrow is the funeral, and also a memorial for my Gramps.  Should be an interesting day!

Ash,

Arthritis Addative

My Bizkit (Zeus' Brother who's passed away)

My family doctors appointment went great as usual.  She checked my blood pressure again and it was 80/58…  I know I’ve had lower, since the last time I went, it was 53/33, but isn’t that still considered low??  My piece of crap blood pressure monitor says something to the effect of, anything under 90/ something is on the low end, but my family doctor said that’s what hers was all the time LOL.  But she wrote me out a note to send to disability about getting a new blood pressure monitor funded .  I need one that works! hehe.

So my Adrenal Fatigue test, cholesterol, B12, all the things I thought would be the reason for her calling me in, came back fine!  Great.. but my blood work shows inflammation with arthritis.

She asked me where I hurt… I have Fibromyalgia so I had a long list to name out.  She is sending me to get bone scans done to find out exactly where it is, and sent me a referral to a Rhuemetologist (sp?), so that will definitely be handy.  Also doubled my fibro.  nerve medication.

I was a little bummed about it yesterday when I got home, but my sister made a great point.  It’s been around already for a while at least, now the doctors can name it and do something about it, but nothing changes for the bad based on knowing what it is now.  I just hate, and I know anyone with more than one illness can relate, having one more thing to add to the list of things already wrong with our bodies.  Yet I am glad to know, so maybe I can improve things

Next up is Monday, when I go to the Neurologist.  Very interested to see what this guy has to say!

Take Care!

Ash,

Blah Why Am I Breaking?

I know we ALL go through the grieving process of going through physical illnesses, and yes those days blow sometimes worse than the illnesses themselves!  I am thankful I haven’t gone through one of those moments in quite a while.  It’s so draining and overwhelming!  I am however have a bit of a relapse with my depression.  Not so much a relapse, bc I consider that to be sick all over again and needing to be treated for it, but instead more of a set back.  Nothing in particular seems to be the cause of it, and it can leave as quickly as it comes.

I’ve been feeling down and out of it for a while, and when my various aches and wantings to vomit subside long enough to let me, all I do is sleep.  I feel like I just want to sleep until the next thing happens, and wake up long enough for that, and go back to bed again.  I wake up and feel like I’m asking myself, what’s the point?  I have tons I could be doing, but I’m not feeling well enough to do any of it… so I just go back to sleep since I don’t feel like watching tv or playing on the computer all day.

I have no interest in going anywhere when I’m in constant pain, and feel like I’m about to throw up every time I’m sitting up for any long stretch of time.  I talked to my dad a couple times yesterday on the phone and I could barely deal with it.  I constantly feel like I’m on the verge of tears, but nothing comes bc I have no real reason for being upset.  I know it started around the time I found out I was getting help with movers.  Wonderful amazing news, and that night I was so upset I almost took my anti anxiety medicine which I may take only a couple times a year, if that.  It really scared me.  And just when I thought I was feeling better emotionally, it started back up again.

I don’t want to call anyone, or deal with anybody bc it’s such a pain for them to constantly deal with me being upset about being sick, or sick of being depressed lol.  It just never ends!  When your whole life revolves around your health, it’s hard not to be thinking of it, bc you’re constantly aware of what your body is doing, and waiting for the worst of it to start up.  That’s not the right way to live, and it’s not the right way to be pulling other people into my pit.  So I’ve just been doing it on my own this time.

I will write more either later this week or next when I have more to share.  I should be finding out this week an exact date when I will be moving.  I just hope even though there is so little left to pack, that I’ll be able to finish it all.

Until Next Time…

Ash,

Grrrrrind!

Heyas

I actually had a GOOD dentist appointment today.  I was getting the moulds made for the mouth gaurd bc I grind my teeth like crazy.  I was afraid at some point, I’d have to be touched with their little metal prods which send shooting pain through me, but thankfully not!  Yeah!!!!!!!!!

It’s weird.  They use this metal spatual with side, and put what looks like sticky bubble gum all over it, and then they press it to your upper mouth and hold it about a minute until it dries, and then they repeat the same on the bottom.  I got my tongue stuck to it for a few seconds lol.  Not recommended for people with weak gag reflexes!

Then they put with what looks like a cocking gun, this blue gel along the top of your bottom teeth and you bite down for a minute, and then they remove it, and that’s it!  Outside of picking the pink gum like stuff out of between your teeth for a bit, it’s no big deal! lol.

I go back in two weeks to get my night gaurd, and to make sure it fits properly.

I go in February for my check up and teeth cleaning aka total hell of pain unless they freeze me up with stuff that makes me shake worse than a person with parkasins!  But bc of me being diagnosed with Mitral Valve Prolapse, and Fibromyalgia since I was there last year, I have to double check with my Cardiologist to make sure I don’t have to go on antibiotics before hand.

Oh yeah and good news!  I went a whole 5 days of not having the Strep Throat, and Bronchitis, and I caught a cold!!!  I was afraid bc my throat was pretty sore, that I’d catch Strep Throat again, but thankfully it’s stayed as just a cold.  I have a feeling it was that *(^(*^)((& at the hospital who coughed in the elevator without covering her mouth.  The dirty &^$^&$&^!!!!!!!!!!!!!!! lol.

On Bisoprolol news, I was expecting the horrible side effects and so far I have none!  Whippee!  The only bad thing… NOTHING has changed.  Not my heart rate, my blood pressure, or any of my symptoms.  I’ll give it a month, and then call him to see what he says if there’s no change at all.  I would’ve taken the crappy side effects for a month or two if it mean’t some good, but so far nothing!  So I’ll keep updating on how that goes.

My Grams, was going to give me the rest of my Christmas presents as a gift card to Walmart, but I’ve decided to just ask for it in cash.  That way I can get the EReader and the recumbent bike.

Anyway, I’m at my mom’s visiting, but her and my sis are both asleep lol.  Nick will be done school soon, so I’m going to read until then.

Take Care!

Ash,

Would Like to Rip My Body Parts Off & Get New Ones!

I feel absolutely terrible.    I am in pain in my joints and muscles.  It feels like my hair even hurts lol.  My head is so stuffed and my chest so horribly sore, that I can’t sleep.  All I want to be able to do is rest, but I can’t settle down to get more than a couple of hours sleep mid morning.  That’s since Saturday.

Since it’s still in my head, I don’t know what it is.  I can’t cough anything up, I just feel bad pain if I cough.  I even took med.s today for pain, and it didn’t do much of anything.  I have Vicks slopped all over my chest and throat and I don’t feel any better.  One nice thing about having a fever… I’m friking freezing! LOL  I’ve had the heat up to 25 in here, and normally I can go all winter without using the heat at all!

I can’t talk for very long at a time and I’m really winded.  I had Marlene my Personal Support Worker‘s boss come to do the 6 month review.  She kept apologizing for coming bc she didn’t realize how badly I felt.   I’d have to just nod yes when she asked me something lol.  She was supposed to be here over an hour, but she shortened it to only 20 minutes so she could leave me alone lol.

I have my ultrasound tomorrow, and I really don’t want to go.  I just want to crawl in a warm hole and die LOL.  Next week I go to the G.I. specialists, and I hope to god I’m feeling better by then.  I will have to cancel with my social service worker this week from being sick.  We were going to finally get to the YMCA to get my membership.  Oh well!  Next week then!

Alright after my break from sitting here, I need to go back to the couch where my heating pads are lol.  I know a lot of you haven’t been feeling good, and have a ton of appointments coming up too.  Wishing you well!

Internet Blew My Last Post Out of the Water!

Mom on the floor cuddling with Zeus lol

Yup.. had the whole damn thing written and went to add a picture and BAM!  Internet went out and lost everything I had wrote lol.  I’m loving this cold weather though!  I always feel so much better in the colder months!  I woke up this morning FREEZING and I was smiling away! LOL.  I’m hoping now that it’s here, it’s here to stay and maybe I will get over this set back I’ve been having!

When I spoke with my Cardiologist, and he mentioned I had Mitro Valve Prolapse, he said that was why I was fainting, that my heart was working too hard.  I decided to be dumb and look it up online.   I had heard of it a million times, but didn’t know the specifics.  I found out that if you have the type that causes you to faint, you life expectancy is decreased by 15%.  Kind of sad to see, so that got me wondering if he was just supposing I had it based of the symptoms I gave him, or if he actually noticed it in my EKG or whatever it is they check to diagnose it.

My mom and sister came by today and I went to their house for the day.  I laid down on the bed and read my book resting while my mom and her dog Winnie snored their faces off lol.  It was too cute.

I go to my GP in ten days to get my results for cholesterol test, and I hope if it is the same and high, that she gives me something for it then.  I hate taking one more pill, but would like to get it under control too

My depression has been rearing it’s ugly head.  I think it’s just all the new tests and diagnosis’s, but it’s hard to handle after a while.  I want to know what’s going on, but I guess with me feeling so horrible lately, that it’s just all hitting me kind of hard.  Just the normal grieving crap feeling that comes with POTS.

So when I was diagnosed with depression way back when, I was technically diagnosed with Severe Resistant Depression bc I have a resistance to all medications, especially any effecting the nerves.  The Cardiologist mentioned my heart was still high but not too bad, but I’ve noticed the last few days my heart rate is getting really high like it used to.  I doubt he’d up the Bisoprolol, or if so not too much bc it can make your POTS worse the higher the dosage.  I’m hoping it’s just a momentary thing bc when I sit it is around 90bpm.  It was just annoying bc for instance, today, I walked out from my living room to the hallway outside my apartment, and my heart rate was 156bpm.

Anyway, sorry to rant, just needed to get this all out.  I’m going to go play my Sudoku book and finish watching Scream 2… cheesy I know, but it is the best thing on right now… which doesn’t say much for the rest LOL.  I love these movies though 30 Days of Night is on…  but I’m not watching it at 2am alone lol.  I love horror movies and very few really scare except that movie and the Exorcist!  Even though they’re both great   Just not cool to watch alone lol.

Talk to you laters!

Ash,

PS Cheers to the fighters for Midorine

Update On Physical Therapy & Life

Next week on Tuesday, I go in for my first physical therapy class.  I know I have to do at least ten minutes on two pieces of exercise equipment.  While at home, I am to walk 30 minutes every day.  It felt really great at first and got tired out from it, but still had a little boost of energy so I was all for it!

Nick wearing his birthday cake hat

I’m not sure if it is the new Beta Blocker Bisoprolol or the walking, but I feel terrible.  I push myself to walk, and I either end up fainting on the walk, or I come home and go straight to bed for the rest of the day.  I was talking to my friend Julie, and she agreed, regardless the walking so much and every day is pushing me away from getting better.

Like I said to her, when I started exercising again after being diagnosed with Crohn’s Disease, it was tiring bc I was weak, had lost over 30 lbs in two weeks, and had lost all muscle I had.  I was able to do it though and easily work myself back to health bc I was in remission and no longer technically sick still.  This time around, not only have I been sick a lot longer, I’ve been a lot sicker.  The main thing being, is they are having me go from being house bound to exercising like a regular healthy person, not even building myself up.  And there’s another big difference from when I started exercising after my Crohn’s diagnosis… I’m still sick this time around!  I’m not even on the way to remission yet.  Taking a shower seems almost impossible… EVERY day!  My whole body shakes like crazy just to get a drink which is about 10 feet away from me!  I wake up rocking the entire bed, and not in a fun way!  I don’t know how they expect me to do this.

I’ve taken a couple days to rest after my last walk bc it made me feel so horrible pots symptoms wise.  I dread the thoughts of walking tomorrow bc I know that will be all I’ll be able to do, and I’ll be spending the rest of the day in bed.

Jasper

As for Bisoprlol, no symptom relief yet.  My doctors push that it’s my high heart rate causing most, if not all my symptoms, but then what the hell is pots then????  Not a heart problem!  It’s a nervous system problem that as a part, not as a whole, affects my heart.  That’s just the beginning wouldn’t you think?  I still say I need autonomic testing done to see what’s being affected a whole, not just the obvious.  My heart rate is pretty much normal on these med.s and I feel the worst I’ve felt… since I was on my last Beta Blocker.  I don’t mind waiting it out, but I don’t feel well, and I don’t think this is helping me.  My doctor wants me to be on it at least two months to give it a good go.  Which I agree with… just sucks feeling so horribly!  Not sure how long it’s been yet…. hell I don’t even know what day it is LOL.

Went over to my mom’s on Sunday to celebrate my sister’s 30th.  Nick (her 4 yr old son) got all these cute little kid decorations and crowns for all of us to wear.  He wanted his mom to be a princess though, and got her a tiara, a princess wand and sash to wear lol.  It was too cute   We had an awesome lasagna dinner with white cake afterward.  Horrible on the tummy but soooo good lol.

Amanda and I on Friday night, went to see the movie, Eat Pray Love.  So good!  Loved it!  Then came back home and just had girl chat and hung out for a bit.

Nick, Amanda and I were going to go to the beach today.  I haven’t been to this one since…. omg lol probably 7-8 yrs!  Time flies holy!  But there’s no way I’m going today lol.  It’s too damn hot out and I’d probably croak in the heat there.  I would like to go before the season is over though, it’s a great place   and fun in the water too bc it’s all sand under the water so you can walk really far out in certain spots and the water is only to your knees hehe.  Hence why it’s called the Sandbanks

I’m also supposed to go with them to my dad this week… I think on Thursday, and Friday my fresh food groceries thing comes in, so hopefully my sis will run my over since my mom has a doctor’s appointment and won’t be around.  Can’t wait for food! lol.

Anyway now that I’m done rambling, I’m going to lay down for a bit then get some lunch.  Hope you’re all feeling well!  *hugs*

Ash,

PS  Thanx and hi!  To all the new potsies.. sorry if I haven’t gotten to you yet!  Normally I would right away, but there were a ton of you added at once and I can’t remember who’s who! LOL

Happiness?

I didn’t sleep last night… at all… and I don’t know how I’m not dead right now lol.  I fell asleep on the ride home laying with a seat belt buckle jabbed in my back…  and I didn’t care

"Where were you all day????"

Today was seriously my best appointment yet… not that, that’s really saying much lol but it went so well I could have cried I was so happy!

We get at the hospital for 11:30am and I go in with a nurse and she asks me all these questions about my health and medications.  I had to bring them all with me and I could barely fit anything else in my purse lol.  They wanted vitamins, antacids, birth control… every little thing.  She told me I was 5′”5 which is a crock I’m 5″7, bc my sis is 5″5 and I’m taller than her lol.  Got the heart rate and blood pressure stuff done.

Then I got to see a Cardiologist.  And I thought he was just going to be there as a consult to the physio therapist, but he actually sat down with me longer than any of the others had, and said it was silly I was being made to wait to be treated and that he was going to take over my case himself since he has worked with tons of potsies, and I’d see him only for a Cardiologist (before it was whoever was on that day).  He even is putting me on a new drug!!!  I can’t say the name until later bc I don’t have the prescription, my mom does.  He told me, he was going to do anything and everything to make sure that I was as stable as I possibly ever can be.  We were conversing about meds and he thought it was funny I knew them all and what they did, etc.  and treated me with respect, and knew what he was talking about.  Not like I was a dumb ass like most doctors do.

"I can't believe you left me alone!!!!"

Afterward, I met my physio therapist… can’t remember anyone’s name but my Cardiologist, and that’s only bc he gave me his card LOL.  She was so sweet, she had me up doing balance things, and making me touch my toes, etc. and we both got laughing.  I got an exercise booklet, and she wants me to try to walk 30 minutes a day, but only if I’m well enough.  She’s worked with 2 other pots patients, but they didn’t bother to finish the program, but she is really sweet about trusting that some days I just won’t be able to do it.  The only thing that worries me, is am I going to still be able to keep my place clean, etc. since that seems to take all my energy as it is, and that’s with Marlene’s help! (My PSW)  But she seems totally cool.  They’re all going to have a meeting about what will be best for me in the program.

I got to look around the place and saw they have rowing machines! Lol, I’ve been very excited and hoping they’d have one bc you’re sitting, and if you faint you just sort of flop over LOL.  But mostly bc I love it I wish I could afford to have one at home!

"Ohhh I know you want to snuggle!"

We were there (it’s almost 2 hour drive from us) almost all day by the time I saw everyone, but I was still able to go to the lab when we got back in Belleville, and got my X-Rays for my family doctor.  I was hoping to get them in today so I wouldn’t have to wait as long, especially when she goes on holidays next week.

My mom is going to pick up my prescriptions tomorrow, which is cool with me.  I was so wiped I just wanted to go home and relax with my Zeus.

Anyway, I have to go back for a meeting to see what all everyone decided for me treatment wise.  They booked it for next Friday, but I have to change it for my mom when she has an appointment, and then they will look at how I’ve been doing with the walking.  You can come in for the program twice a week, but that would be way too expensive gas wise, so they’re going to work it out so I can come in for 2 sessions in one week where they will show me what I can do at home.  Then I only have to come once a month for a check up to see where  I’m at.  And every time I come in, I will see my Cardiologist too for a check up

"Okay, I'm done with you now... nap time!"

One odd thing, all my charts said I have fibro…. and no one told me.  Waaaay back when I was in a lot of pain during a crohn’s relapse, and they thought I might have the beginning stages of it, but nothing ever came of it.  No testing nothing, just me listing my symptoms and them jabbing the pressure points lol.  So they physio therapist is just going to treat me as though I am since it won’t make much difference anyway to what we both wanted me to do.

Anyway, I am totally crazy tired.  I have only had a handful of timbits to eat all day, so I’m going to have some dinner and then crash.  Thanx for all the well wishes and good lucks As tiring as it was, it turned out great, and I feel like I’m given the chance to fight for a quality of life that may not be as it was, but better than this, and not so hopeless like before!

Mwah!  *Big Hugs*

Ash,

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,

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,