Wowzers

12-Dancing-Princesses.jpgIt’s been SO long!  I have been really out of it lately, and just haven’t had it in me to sit down and write until now.

I got taken off Humira, and have now had two infusions of Remicade.  The first one I got with a cortisol shot and I was in so much pain that night, I thought I was going to have to go to the hospital.  Then I ended up with a sun rash from the medication and ended in the ER twice bc of feeling like my breathing was labored, which ended up being due to low blood pressure, and a low heart rate.

I am doing better on it now.  I get Benadryl and refuse the cortisol, and have SPF 60 sun screen which I put on every day lol.  I am stocked up!  I got my first infusion, two weeks later then second, and I go back in a month for the third, and then after I go every eight weeks.

I tried doing this paper crafting, where you roll up paper like a straw, and then roll them into a little circle and keep attaching more to the end, which when you are done, comes out to looking like a bowl.  That is some mystic horse shit that I DO NOT get!  Mine turned into a spiral of paper and gooey glue. Lol.  I am not made for crafting.  BOO!

Got spoiled and got to see my best friend Nicole twice this month.  The first time was to do a photo shoot at her parent’s place / in the style of an art show she has tomorrow.  I also got to see all the memory places for her, like the creek, her room, where her grandparent’s farm was, etc.  That alone was awesome:)

I was also able to scoot out for a quick visit yesterday to wish her luck and cuddle her animals.  I love them to pieces!  I got to pet and visit a little with her littlest adopted Sophie, and Pabu who is getting so good at not being nervous, allowed me to hold him!  They were all rescued strays, so they have a hard time with people they don’t know.  Now their other cat Yuki, you would never know it, bc she loves the attention, and their dog Lily is just the greatest little cutie thanks to their hard work in training her.  They’re all my little dolls❤

Today we celebrated my mom’s birthday.  Nick goes to his dad’s tomorrow, which is her actual birthday, so we had lunch here today, and then they were going out to a park.  We were all going to go to the park to eat, etc.  but I haven’t been doing so well, so they all came up here with sandwiches, and I made a cake for her.  We realised we didn’t have candles, so I had a long skinny one at my table, and my sis and I just smucked it right in the middle of the cake and lit it LOL.  My sis even helped me, by doing the girl’s cage.  I didn’t expect her to, with her allergies too, but I am so thankful she did!

Tomorrow we are going shopping for mom’s birthday to get her a plant, bush, whatever she wants, of her choice.  I couldn’t get it before, bc my worker who takes me out, was off work, but this way she can pick the one she wants most.

Will try to write more often.  Hope you all are doing well!

Ash,

Month Long

100_0069Well I heard back from my test for Myenthsa Gravis Disease… totally did NOT spell that right, but I’m too tired and lazy to Google it lol.  It was negative.  Which totally shocked me.  Yes good I don’t have something… but there’s something, and that would have begun the fixing process.  I don’t see him again until August.  I hope he’s still going to keep looking for what it could be!

Went to my G I and he agreed my reaction to the Humira isn’t like most people’s rash like reaction.  He swears it’s bc it has nickel in the needle, and I’m allergic to nickel.  Unfortunately, he contacted the Humira company to get a hold of me with other options for getting it, and there isn’t any without nickel in it.  Really?  So odd to me, bc I know quite a few people who get a rash from it.  Looks like I’ll be going on Remicade now and go to the hospital once a month for the day to get it through IV BOO!

My grandma scarily had a heart attack.  It was very minor, and she is recovering better than I thought someone half her age would, but it is still terrifying that she had one period.  Minor or not… a heart attack is a heart attack, and she’s in her mid eighties!  Thank God she’s taken such good care of herself.

Aunt Kelly was down bc of grams, so she stayed with me one night and let me test my cooking skills out on her.  I think I did pretty good!  Speaking of cooking, I have added a recipe page to this blog for recipes I find yummy, and think you would all too!  Let me know if you try any of them out!

Called my dad today to wish him a happy father’s day, and Lois reminded us it’s next Sunday LOL.  Oh well.  Now he knows he’ll be getting a call next week too about it lol.  I have a gift for him, but have no way of getting out there to get it to him.  Him and Lois came up a few weeks ago, and he tuned my guitar for me❤  Gotta love our dad’s:)

Nicole and Adam came to visit when I told her how stressed I had been.  They came up with my furry niece puppy, Lily and let her stay with me for cuddles while they did some shopping and got us lunch bc I was too sick to go.  She impresses me more and more, how good she is getting.  I needed my puppy love!

Nothing much is going on this week.  I am going through my crap and resorting it, so I have somewhere to put everything and not just have it laying around everywhere.  So far the crap is winning! Lol.

Take Care.

Ash,

Catch Up

13098905_474217519439142_1750729996_n(1)Well I went back to the Internist again.  Honestly thinking, bc he is taking over my POTS and any other Neuro type issues, if I should just stop going to my Neurologist in Kingston.  He’s a great man, but does NOTHING for me.  All he says is, “Keep doing what you’re doing!”  And that obviously hasn’t been working, so why drive once a year for two hours each way, just to be told that?  Considering it.  I don’t go to see him until August, so I may go one more time, or not at all and just cancel the appointment.

The Internist got all of my test results, except for the one that has a turn over rate of 30 business days, for Mayenthsa Gravis.  All the others came back good, so while we are waiting for the results of the other, he is trying me back on Midodrine for POTS.  I was put on back almost 10 years ago before I even tried a beta blocker, but they  didn’t give it a good shot, especially considering it took two and a half years to get me on the right dosage on my Beta Blocker.  So we are trying it again.  I am all for this, but you cannot lay down for a half hour after taking it… and it was an hour for me bc my blood pressure would drop so low I couldn’t get up off that couch.  He wants me to take it three times a day, but with my randomly falling asleep, it worries me!  Half the time I don’t mean to fall asleep it’s just BOOM and I’m out.

13150948_1268168146526759_1626993719_nI’ve been feeling better this past week!  Not on the medicine yet (I get it delivered tonight)  but having a great haul of it!  I got my new dresser repainted, and I don’t like the color I chose for the drawers, so just need to redo them now, and I am done!  My dad is going to give me his antique ceramic knobs he has to go with it, so it’ll give it that extra punch:)

I was also able to get out with my friend for a late dinner.  I was out and asleep about a half hour after I got home, but at least I did it! Lol.  And I got to meet her puppy who fell asleep in my lap, and wanted to sneak home with me!

13129971_1043145832422489_1744492991_nI was also able today alone, to get the cat litter dumped, the girl’s cage cleaned and garbages ready for tomorrow, and go out and do some weeding!  Now it’s no where near as good of a job as I’d normally want, but I also got that Miracle Gro seeds that you just shake into the yard and the grow nice annuals, to fill up your beds.  I hope it works… less weeding!!!

I was also able to make my mom and yummy broccoli dinner yesterday.  I want to start adding my recipes that I love on here, and link them from a site, if that’s where I got them from.

I am going to head out and get dinner started.  So nice to be somewhat normal like!!!!  Well still not really, but yay none the less!!!

Ash,

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,