New Hope

AshleyEarlier last week I was able to get a referral to an Internist.  I heard from his office right away and was able to get in for yesterday.  He was so kind and OMG he knew his stuff!  I brought a page of examples of things I have to do to adapt to my POTS, and he has quite a few ideas for me!  He thinks too, that it might be something else entirely different.  I see him again in two weeks after my first round of testing is done on Tuesday.

I also have had a Loyalist student coming by.  At first, she contacted me through Kijiji bc she saw my ad about looking for nesting dolls.  She wanted to do a written article on my collection.  Well we got chatting, and I mentioned I had POTS and then later, when having to do a video interview of someone, asked if she could do it on me and my illnesses.  So she popped by today to get some photos to go with the video, and some video clips.  Got some of the girls and of course Zeus had to pose for her lol.  She’s going to try to send both the written and the video article to me, and if she doesn’t mind, will add them both on here!

Today is kind of a cleaning day, so I am trying to get all the animals cleaned up, so I can do their nails on the weekend, and have this place finished up the way I want, so I can get back to doing some loom projects I’ve been wanting to do.  Like the hobo purses.

I contacted my G I about me getting hives even with the Benadryl when I take my Humira, and he now wants me to do it with 50 mg of Prednisone!  I have to take it today, and am NOT taking it this time around.  It makes me so sick!  And I can’t get in to see him to properly discuss it bc he’s been working at the hospital, so I have to ask questions through his poor secretary!  BOO!  Wish me luck on it today!

Not sure if I mentioned this the last time, but with Reese my guinea pig.  I did have to put her down.  My dear little soul was no longer eating or drinking, or coming out at all barely.  I couldn’t put her through the cancer any longer, and took her to the vet.  I was able to bury her at my mom’s, and my sister gave me a nice baby blanket to use of Nick’s, and a pretty box she had gotten that was perfect.  When all the other pets are asleep in the bedroom, I miss her terribly, bc she was always up for keeping me company.

Will write again soon, but wanted to check in bc as sick as I have been, I am glad to have some hope that things will be getting better.  Or at least a doctor who is willing to try!

Take Care.

Ash,

 

Purely A Rant

I have so much stress right now.  I need to be able to unload.  After almost a full week, I finally realized, this is the place!

12968188_10156771837540594_2363002437778985951_oMy one guinea pig, Reese, is dying.  She has tumours on her one leg and one on her lower right breast, which is a common spot.  I was told, the best thing I can do is keep her comfortable and happy.  I noticed last Monday she wasn’t the same.  She was actually in her house… which she normally flips over bc it’s in her way.  I had just bought her a big log to put in to play with to replace the house with, and I found her Monday not coming out.  Tuesday I had her out for loving and she killed my allergies as per usual, but she wasn’t eating or drinking enough for me to see it in her food bowl, and her carrots were still there from the night before.

12495091_10155042300794815_7558376068035675114_n.jpgWed. my PSW came over, and I had her hold her, while I was cleaning her cage, to give her love, and my allergies a rest, and she found the lumps that were not there the day before.  I called the vet who does deal with them, and said bc of her age, and the tumours, that there wasn’t a lot they could do, that would be fair to her.  So I am still giving her fresh water and kibble, and veggies at night and hay to get her appetite up a bit, and she comes out wanting it, but never finishes it.  I have been crying every day since Wed. when I unloaded my tears the first time on my psw.

I feel like realistically I am doing right by her, and she has had a spoiled awesome life with me, and her previous owners, but I can’t help but feel like a horrible owner bc I can’t fix this.  I want to so badly, and I can’t.  I’m stuck.  All I want to do is hold her and bawl the whole time.  I even cried myself to sleep for a couple of hours holding her the other day.  I hate this.

1958242_10155042299454815_3314172254791598971_n.jpgI have an appointment with an Internist next Wed. morning.  I am excited to see what they will come up with, since no doctor has any idea what to do for me any more.  I am worried they will say the same thing, and I will be lost and left to basically rot.  I can’t keep doing this sick thing.  Obviously I am not going to give up, but this is where I am yet again just sick of being sick.  Sick of no one who can help me, understanding just how sick I am, or doing anything about it.  This is my life at stake.  I have to have some quality to it.  I know my health could be life threatening, or being bed or wheel chair bound, but that doesn’t mean this life is easy.  It’s really damn hard fighting all the time, every day.

I am also going to get an ultrasound done on my breasts, since I have had a lump under my arm for a few months now and never did anything about it.  Yes this is new news, bc I have chosen not to stress anyone out about it.  I am sure it is fine, but does need to be checked, so I will be calling for an appointment this week to do that.

12931226_10155042298914815_5066050185702400832_n.jpgI don’t know if I had mentioned yet on here, but I had a topical allergic reaction to my Crohn’s needle, Humira.  I broke out in hives.  I called my G I in a panic thinking I had to go off it, and all the crap that comes with it, but he said just to take a Bendryl before I give myself the needle, and it’s common, lots of patients do this.  Great!  Okay!  So this past Thursday came around, and my mom stopped by to be here “just in case” when I took it.  Everything went well!  No hives!  The next day, I was on the phone with my best friend and I noticed my stomach was itchy.  Full blown hives over my stomach around the injection site again!  So I panicked on her, took a Reactine, and put Cordisone cream on it, and it finally went down.  Then again yesterday I had a couple spots, but nothing that amounted to anything.  So yet again, I will be calling the G I about it.  Grrrr!

I am also to take Benadryl every night before bed.  I am only sleeping a couple of hours at a time, and randomly falling asleep sitting up, etc.  So it’s to help me sleep, for now.  Nothing!  The first time I took it, I couldn’t stay awake, and now like all med.s with me… nothing.  It doesn’t make me feel at all tired!  WTF???

So this is my rant.  I am sure there is more, but that is the worst of what I am feeling.  I needed to get it out, and sorry if I caused stress, worry or panic on anyone reading this.  I am trying to get better.  I am trying to stay sane, which is hard when life is throwing actual stressful situations at you, but I am doing the best I can right now.  Any nit picky advice is not wanted or appreciated.  I just want support so I don’t feel so alone all the time.

Ash,

 

 

March Madness

11994010_10154922117004815_1672459377_oWell something is going on.  I haven’t been sleeping more than a couple hours at a time.  I fall asleep sitting up and don’t even realize I have, until I wake up.

I went and got my tests done and my B12 and Iron are both good, and my pre diabetes is non existent now thankfully, but then what is this???  Waiting until the beginning of April to go back to my doctor to see what is next.  I hate waiting this out.  So pooped.

12728878_10154879862669815_5097769774628107276_nI really haven’t written bc sadly I have been non functioning.  So obviously I haven’t started to rehabilitation program yet.  Very disappointing, but I can barely get by each day, let alone add a really hard work out program to the mix.  I have started drinking the right amount of water (3Ls) a day, and still working on my crafts.  Just sooo exhausted.  My next project, is to try loom purses.  We shall see how they turn out!

Hope you all are well!

Ash,

Craft Shows & POTS Program?

12742457_10154852110484815_6217521463518586951_nI’m starting (crossing fingers) in March, a POTS rehabilitation exercise program.  It’s by a place in the States, that did an rehabilitation study.  The study is done now, but your family doctor can email the people from the study their office information, and they will email your doctor (or specialist) this package full of files.  You can work at it on your own like I will be, or you can do it with the care of your doctor.

It starts for people truly deconditioned by the stupid illness, to start with a Premonth 1 and Premonth 2 exercise plan, then you start exercise months 1-4 and I believe with an added 2 months to help you stay on a life long plan.  I wanted to start this month, but I got a bad kidney infection and could barely move.  So here’s knocking on wood to start March 1st.  I will let you all know how I feel it goes for me.  I would love a heart rate monitor watch for when I go, but I can’t afford one right now.  Maybe next month when I get my GST cheque.

So anyone who reads my blog on a regular basis knows I like to do small craft things like knitting, gardening, etc.  I am starting loom knitting right now.  I got myself the Martha Stuart loom knitting kit which comes with a whack load of pegs and loom boards that, that alone would cost way more than the kit itself.  I am actually really enjoying it!

What I am thinking of doing, since scarves, etc. don’t sell well online on places like Kijiji, etc. (not for what they cost to make even usually)  so I would like to spend this Winter, into the Fall working on a bunch of knitting projects, and try to possibly sell them at a craft sale if I am well enough to do one.  I very well will not be well enough, but I want to get some pieces started.  Regardless I will sell them online.  I would like to get into more crafting ideas by then too and see what I can do to go with my stuff.  We shall see!

Valentine’s weekend was great.  My dad got home from his trip and had gotten me an amethyst necklace I wanted on his trip and brought me up roses:)  I completely forgot that he gets my sister and I them each year.  I had missed him so much!

Talk soon!

Ash,

 

Our Lives

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

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

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

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

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

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

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

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

Take Care.

Ash,

January Start Up

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

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

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

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

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

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

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

12346656_10154675946759815_1930569460_n
Tomorrow is family dinner night.  We switched it to Sundays now.  OOoo gotta switch to Ghost Adventures lol.  Will talk soon!!!

Ash,

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

Christmas & New Years

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

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

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

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

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

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

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

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

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

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

Take Care!

Ash,