Monday, December 5, 2016

Of course I'm the 1%

So when I last saw my immunologist he said he wanted  me to see a dermatologist because I showed him my cheset that had pimples/sores all over it (but not under my breasts or under my axillas) and he was all concerned because he was sending me to a different hospital in big city.... I figured what's the difference, big city hospitals are all the same. I figured I would be getting a good Dr either way, so I agreed.

So I saw the Dr.... or actually I saw the resident who took my history and prettty much had me disrobe and checked me out from hide to hare, from tip to top... you get my drift - really, I don't get why they even gave me a hospital gown! Hahaha

So when the dermatologist came in and asked the resident what he thought I had, the resident confidently stated - hidradenitis suppurativa.... a condition that affects ONE, yes ONE percent of the population!!!!!!!!!!!!!!!!  Let that friggin sink in!!!!!!!!  Holy shit bat man.

Go figure... It doesn't really surprise me that I''m the one diagnosed with this! It seems to me that with everything that's been happening that I would be diagnosed with something that is rarer than rare.

So you want to know what it is I'm sure... well it's essentially where my body is attacking the hair follicles and oil glands and it's overly inflammed and such - so it's creating little pockets of abcesses of pimple looking things. And sometimes it can create fistulas - like what happened to my bottom - yep....  he thinks that my bum issues are related to this condition!!!

An answer!!!!

Once they checked my skin and told me how severe it was, the dermatologist asked the resident what medication I should be started on.... she suggested clindamycin and rifampin, but those meds interfere with my insomia meds - amitriptyline & quetiapine - and so have to go to the next highest level which happens to be the highest level - Humira (Adalimumab) which is super expensive - think $3000 per dose - which will be $21,000 for the first month alone and then $12,000 there after!!! Crazy right!

So the doctor's office contacted the medication company to start the process who then contacted me to get the process started on that front - then we contacted my insurance company who indicated that in order to be covered it had to be "preapproved" and so my derm's office had to send info to the insurance company with info about this and then the medication company will be contacted to say that it has been approved and then they will contact my pharmacy to order the med and then will inform me as to where I can go to do my first injection because the first one has to be observed in case I have an anaphylaxtic reaction - which I doubt but still.

For my condition and med It's liquid medication that must be injected subcutaneously like insulin and so I've chosen a pen system, just like an insulin pen. For my first dosage I have to inject FOUR doses!!! Crazy right! It's essentially to shut off my immune system. What that means for my immune system I don't quite know, because as you know (if you've read any of my history), I''ve gotten a TON of infections - and weird ones, one after another..... I know I have several right now actually. But whatever.

Tomorrow I have to see my primary physician to get some antibiotics to deal with the infections because if we turn off what immune system I currently have, I'm going to be screwed! So I'm sure that tomorrow I'm going to be put on IV antibiotics.... or at least that's what I'll be pushing my Dr for. I think that's the best option if we're going to be dealing with the issues at hand. I know that I have a resp infection - I think I should do a sputum culture - and I know that I have a UTI (cloudy yucky urine with intermittent lower back pain) - I figure if he puts me on Erterpanem then that will deal with the UTI..... for the sputum resp issue I think possibly a Z-pack and wait for the culture to come back for sensitivity and I think that since I'll be taking all these antibiotics I'll suggest Flagyl as a precautionary thing so that I don't end up with C-diff! Cuz really, we're talking about me here, I'm the 1%, I'll end up with c-diff!!!

Tuesday, November 29, 2016

A tad bit backwards

I've said it before but I'll say it again, I'm Canadian.

I complete my US based BSN program in just over two weeks - WOW! Shocking consdering the hoops I've had to jump over to get to this point.

That being said, I still have hoops upon hoops to jump through. I have a job waiting for me - pretty much my dream position!

In order to get said position I have to get a US license in the state that I need to. HOWEVER, said state won't even let me write the NCLEX because I don't have a social security number (SSN) but I can't get that until I have my NCLEX written and receive my visa.... so how in the WORLD am I expected to get this license then you ask? Well I have to write my NCLEX in another state and then get my visa in order to request endorsement from the state that I actually want to work in.

Ass backwards isn't it all?!

Yesterday I called said state I want to work in because they require that I get a background check and fingerprinting done - but that I am supposed to request endorsement FIRST.

Problem is is that because I graduate in December, everywhere closes over the holidays and thus I lose valuable weeks in getting my authorization to test (ATT)... then I have to actually TAKE the exam, get my results (hopefully a pass on the 1st try) then get my visa - so that I can have the SSN in order to even apply for endorsement..... all before the beginning of February!!!

Oh ya, and to top this all off, the stupid visa ppl say that they need how many hours of clinical I have done in certain areas or else they won't give me the visa - so now I have to contact the school I went to before for my practical nursing and where I did the most of my BSN previously. When I talked to them last they said that it would take 8-10 WEEKS (Like WTH?! It doesn't take long to look through a few course outlines and make calculations to fill out the required paperwork - 8-10 DAYS I would think would be more than sufficient). If it seriously took them that long I'm going to be screwed for getting my job started when I'm supposed to.

Geeze why must it be so complicated?! Can't anything in my life be straightforward and simple???

I did forget to mention that I had contacted the other BON to see if I could get the background check and fingerprinting package sent me now so that I could get this done and have it waiting for the endorsement and then when I'm ready, I don't have to wait for the package to be sent to me, me to get it done and then to have it sent back to them.... which of course would take time I just do NOT have.... and thank GOD he was listening and this person actually agreed to it!!!! So this person is sending it to me so that I can get it done (hopefully while I'm in the US for my grad cuz everything has to be done in the US - which I do not currently live in!) and it won't delay things later on.... we shall see.

Sunday, November 20, 2016

They all want a piece of me

On Friday I got an email.... at 9:30 at night. Ya, I know, we all get emails at all hours of the day and night, big whoop! But this email stood out among the rest. Do you want to know why?!

Well as I've said before, I've applied to several nurse residency programs and everyone that I applied to I was asked to have an interview with. Yep, I have a fabulous resume (that I did by MYSELF and did not use a professional resume service [yes those exist]) and a pretty awesome cover letter (if I did say so myself!) and I even put together a pretty darn good letter of intent for a couple of programs.

For those of you who read more than just one post and go away (ya I don't blame ya, I can be quite boring - though stupid shit happens to me frequently so if you want to continiue reading about it all, read some more!), you know that I was already asked into a nurse residency program already and accepted said program.

Well I got another email from one of the residencies that I applied to - Vanderbilt, asking me into one of their programs. If you know anything about programs, you will know that this program is prestigious and so LOTS of applicants. And I actually beat some people to be asked!

Now for the bad part, I have to turn them down. I'm sure you'll wonder why I would ever do that but the thing is is that the one I already accepted is in the field that I want to go further for education - neonatal nurse practitioner. The Vanderbilt program has asked me into the operating/post op program - not where I want to go. If I wanted to be working on a med-surg unit I would just stay in Canada!!!!

I'm not quite sure how I turn them down though. I certainly don't want to burn professional bridges after all. Plus, I don't think I can change their minds about which program to put me into. Geeze, sure do with I could though!

Friday, November 18, 2016

Always negative and holy hell am I awesome!

I'm so frustrated with my husband. We've decided that we aren't going to Pakistan to attend his brother's wedding because we just can't make the finances swing or take on that debt. Because there is no way that I'm going to go there and not actually experience a million different things and not buy a TON of stuff. So we'll send little tyke in our place (again!). Seems to be the story of our lives!

So I approached hubby about his vacation time because work was allowing him to carry over two weeks but thought that he could talk to his boss about still being able to carry over whatever he could get and come move me to the US to be able to start the nurse residency program.

No surprise he wasn't thrilled about the idea. Seems that he always talks about the negative. He can't look into the good - like in ONE MONTH I will be walking across the stage to get my DEGREE!!! However, he would NOT really talk about graduation and such until after my graduation was guaranteed (passing the stupid ATI comprehensive test). Now he's doing the same thing about starting the residency program. He won't talk about it until after I have my boards passed and my visa in hand. It's incredibly infuriating.

Then I pushed back about how hard I've worked this semester both in school and in getting an offer for a nurse residency. It's not exactly easy for this to occur because I have to show how superior I am to others. He agreed but wouldn't give in. I talked to him about how the visa should happen easily because I have a job offer and I'm doing anything I can to try to ensure victory on the boards. He softened some. I told him that I didn't expect any over the top gesture, but that he would simply agree to talking to his boss about carrying at least a week over and taking that time to come with me and help me settle into my new digs and get all set up to start the residency.

He finally relented and said that he would see what he could do. I mean, I'm not asking a lot from him, just to take the time to look forward to our future and to think positively about it, even if it's not completely set in stone yet.

Hell, we've jumped sooooooo many hurdles to even get to this point, so have a little faith that God has a plan and that just possibly that may be us moving to the US.

Saturday, November 12, 2016

Post immunologist

I saw him and reviewed the bloodwork. Nothing too abnormal, my IgG subclass 1 is still low but it's higher than the last time. The total IgG was normal though so nothing will do anything about it. He was perplexed why one of the tests that he really wanted done - the oxidative burst assay - wasn't done when I had all that bloodwork, or at least he didn't get any results and of course the physician that okays this test (or something like that), is not available for another two weeks. My Dr sent an email but also told me to contact him in two weeks to see whether he got results or whether I have to do this test all over again. Sooooooo frustrating!

BUT at least I have to go see my surgeon in two weeks so I figure that I can do the blood work then if I find out that it wasn't gone before. UGH!!!

I also asked him whether he knows what's wrong with me and why my immune system is crap and I keep getting sick and so forth. Surprisingly he said that he has "no idea". Nice to actually hear a Dr tell me the truth!

I also told him that I intend to move to the US - he asked when I was returning, I simply responded "umm never" hahahaha I am supposed to see him one last time in January so I'll get my records then so that when I move to the US, I'll be able to find my own immunologist.

Oh and on a different subject, I got the result back for the paper that I lost a friend over - 370/375!!! I hope she feels that it was worth it.

And my nursing pin came in - I can't wait for this semester to be over with and to be pinned and receive my fake degree - to walk across the stage and celebrate the ending of my BSN education. Goodness I can't wait for these moments!

Tuesday, November 8, 2016

Round and round we go

So my hospital won't employ me because my neurologist won't complete paperwork or answer their damn phone. Their doctor said that he would help me get to a new neurologist in the big city, but I haven't heard from him (big surprise right). Story of my life! I see my immunologist in two days, doubt that he'll do anything or give me an official diagnosis. Who knows, I suppose I could always get surprised, but not likely.

There's only a month left in school, this thought is so shocking to me. I never thought I would get to this point. I've come against so many hurdles that I thought it would be impossible for me to surmount them all. But here we are, a month left.

My mom said her boss won't give her the time off. I found a way around this where she'll fly the day of my grad, come to it and then the same day fly back. I knew based on how she was acting/saying when I gave her this solution that she wouldn't take me up on this. Sure enough, that's exactly what happened. She didn't care that she was hurting my feelings. She said that she was too "scared" to do that all in the winter. I'm calling bullshit but who am I to judge. Whatever, I've come to expect that she'll disappoint me.

I went looking into housing for moving to my southern city, things are affordable. Heck, I can even get a small house. But hubby pissed (I was going to say rain but he was harsh and mean and difficult to talk to abou this) all over this. He just wants to put money into someone else's pocket. It's frustrating to me. Don't know how we're going to come to a mutual point of understanding and agreement. It seems we're oceans apart.

Last evening my DD was in the bathtub and my BIL was visiting and kept asking where DD was even though I'd already told her where she was. She then got all huffy that she wasn't out yet because she needed to "practice" her religious reading with her before she read with her teacher (which I don't understand why we pay her if my MIL is the one doing the practice with my DIL) and said that if my DD needed to get out then she should go tell my DD to get out of the tub. Well my BIL said that it was my "duty" to go do this. For the reasons list above, I said to him and I also put it out there that if I was to leave DD behind while I move south (which is what I'm intending to do - hubby is being left behind as well) then she will have to step up and be an authority figure (which thus far she has sucked at). But of course he argues with me and then my MIL goes upstairs and actually gets her out of the tub (after me giving her the notion that she could literally pull the plug in order to get her out) so that she could practice. Should be interesting when things come to fruition.

Monday, October 31, 2016

A paper is worth more than friendship

For the last two weeks I've been undertaking a paper for school.... with a friend that I've been doing this whole thing with since the beginning. We didn't start out knowing each other, but became friends at the beginning of this journey. I learned that we were strong academically and so when this last course came up, we asked if we could partner up for the papers that we have to do.

BIG MISTAKE!!!

This most recent paper she did her parts quickly. And expecting the same of me. Problem is is that with my IIH, things take me a bit longer. Plus our sleep schedules are opposite and she expected things done on her timeline. She expected updates and work to be done even though I was still in the prep part.

So this upset her and she went to the teacher and threw me under the bus. She chose the paper over our friendship. When I responded I was so shocked. I explained what was going on and thankfully the prof saw what was real. I even stated about how there was still 10 days left before the paper was due, she didn't need to freak out because the paper wasn't complete.

I couldn't believe that this happened.

So now I'm left to pick up the pieces and pretty much just do my part and get this over with. I am so hurt that she did this. She knows what I've been going through and that still didn't matter.

I guess I finish this journey alone.