Blood Thinners

Guess who isn't on Warfarin anymore? 

It's me. Not sure who else you would have guessed. Unless you are also not on Warfarin. If so, congratulations!

I'm not completely off blood thinners, since chronic steroid use, autoimmune inflammatory diseases, and the disease I have involving veins anyway means I've got an increased risk for clotting and stuff. But, the one I'm on now, at least, doesn't react with other meds as often and it decreases the risk of bleeding out.

So, hurrah!

I had lots of appointments this past week. ENT says my nose looks bad and it seems to be shifting. Hopefully this doesn't mean my nose is going to sink completely, but if it does there's not a lot I can do about it. He is also concerned about my recent dizzy spells, but he doesn't think it's because of my ears. He mentioned it sounds like MS but we all know that vasculitis can be anywhere and mimics symptoms of other diseases. 

I also saw the hematologist, where, on top of taking me off warfarin, noted that I seem to be developing some jaundice. My bilirubin has been high for almost a year and now the edges of the sclera (white part) on my eyes is turning yellow. 

Guess it's just something to keep my eye on. Pun probably intentional.

I see the eye doctor in a week and eventually I will get in to see the dentist. 

Hope you are all doing well!

Happy New Year!

I hope everyone is having a nice new year so far! I haven't done much. I know I keep harping about a surprise, but to be truthful I haven't had time to work on it all December!

Now that the new year has begun it's time to get back to work!

In other news, this whole hospital change my rhuematologist made has been such a pain. I've been trying to get three prescriptions filled for over two weeks now. I've been out of them for that long (I did get an emergency supply from the pharmacy but have been out of that for two weeks). The pharmacy hasn't heard anything back from my doctor.

I called his office today and after waiting on hold for 15 minutes I finally get to talk to the receptionist lady who asks me what the problem is. I tell her I have been out of several prescriptions for two weeks and the pharmacy is saying that they are waiting on confirmation from my doctor. I wanted to know what the hold up was.

Apparently, no one in his new office thought to even let him know I had been trying to contact him and the pharmacy had been faxing for refills! Two weeks! Two weeks all of this stuff has been with the office and the front end staff have been ignoring it. All I could get from her is that she would put an alert on the paperwork that says it's urgent.

So I still get to wait. In the mean time I'm stuck suffering from headaches and withdrawal/shock symptoms from the anxiety med that I have been out of. It's not the type of drug that you can just stop and I have essentially been forced to do just that. And I've had to struggle along without having pain medication which is really cutting down on my sleep which just makes the anxiety that much worse!

I am not pleased with his new office staff. I miss the days where I knew all of the staff by name and knew that they would do just about anything to help and would stay on top of things.

I guess that's what happens when you go from a small, private office to a big University hospital.

Happy Holidays!

Still working on that surprise. I'm not sure when exactly it will be finished but I will let you know!

In other news, I braved a blizzard to make my way up to my rhuematologist's new office for my appointment on Monday. I was just glad my sister was able to drive me and that we took my Subaru!

A bunch of these were on the freeway!

This was a pretty good appointment, my kidneys beans and liver are struggling some, but they could be worse. I'm not gonna complain about that! 

I also now get to break in a new nursing staff since the large hospital my rhuemy now works for does not have vampires experienced in rheumatological diseases. I'm sure they actually do, but the office he was at this day did not. I had to go with regular internist nurses who struggled a bit. It left my hands looking like I've been fist fighting.

Well, that's my quick update. I hope you all have a wonderful holiday season no matter what you celebrate!

Also, I'm typing this from my phone and it won't let me change the paragraph orientation. So sorry about that.

Happy Birthday!

Wow, soon I'll have to change the description of myself on this blog from being a blog by a twenty something girl. I'm in my last year of my twenties!

There were many a time where I wasn't sure I was going to make it this far, but for now I'm here and carrying on. I've still got that surprise thing planned. I can't say anything yet because I'll jinx myself, but I thought that maybe if I said on here that I had a plan, even if I didn't put down any details, I would stick to my word.

News!

Sorry I haven't posted much lately. I've been working on something that's kind of important to me and if you've been following and enjoy my blog you will be excited about it too! But I'm not going to say anything other than what I've already said here until I get everything all worked out!

I hope you all stick with me and can be patient for a bit!

Have a happy holiday season and take things easy!

Viral Awareness

There are so many things going on right now in terms of invisible illness, autoimmune awareness! They are simple things, too. While they might not seem like much to people without an invisible illness but anything we can do to help other people learn about our struggles can do so much.
One of my biggest hopes is for someone to see a post that mentions a rare or invisible disease and for them to look up something about it. I say this a lot, but, the more people know about these diseases the easier it is for people that have them to get treated!

Just a Little Reminder

that good things can take a long time to happen.

I know it seems like it will never come, that you will always be stuck in the same place. But remember those terrible platitudes people are fond of saying; Rome wasn't built in a day, the caterpillar has to take some time being a chrysalis before it becomes a butterfly, and it can't rain all the time, etc.

If you just keep persevering, things can get better. Your life may have turned out different than you thought so you just need to keep going. Even if it hasn't turned out exactly the way you wanted, doesn't that just make it all the more enticing to see how things will turn out?

Keep pushing for remission(s), keep pushing to realize your dreams, keep pushing through whatever crap has you bogged down so you can see what comes next.

Oh, and here's another platitude for you: You've survived 100% of your worst days so far!