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.
Monday, January 4, 2016
Friday, December 18, 2015
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!
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.
Tuesday, November 17, 2015
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.
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.
Tuesday, November 3, 2015
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!
I hope you all stick with me and can be patient for a bit!
Have a happy holiday season and take things easy!
Wednesday, September 16, 2015
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!
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!
Tuesday, August 25, 2015
Just a Little Reminder
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!
Wednesday, August 5, 2015
Happy Anniversary ADA
I meant to make this post last month, you know, when the American's with Disabilities Act turned 25; but if you've been following me for a while you should know by now that I can be very sporadic when it comes to posting. So, sorry for that!
Anyway, with the ADS being legally old enough to rent a car if need be, many people assume that there isn't work to still be done in relation to rights for people with disabilities. If you assume this, you would be wrong. There are still many issues that need to be resolved; such as how prohibitive the process is for people with disabilities that need assistance is when that person decides to marry, or, if the person was married before they needed assistance they are often forced into divorcing their spouse.
Another huge area that needs improvement is in the treatment of, and social perception of, people with invisible disabilities.
One way this is happening is by a push to start using a more inclusive symbol for disabled parking and bathrooms. These new symbols would show not only a person in a wheelchair, but would also demonstrate other ways in which a person may be disabled.
The hope in doing this is that more people will stop judging those with an invisible illness or disability for exercising their legal right for equal access. This may lessen the stigma many of us face by having invisible disabilities.
It is always frustrating to come back to your car and see that someone had left you a nasty note telling you how you're a bad person who is going. It's even worse to know that there are some people out there that equate someone having an invisible disability to them "really being too use the bathroom."
Yes, I have come across someone saying that online. They actually felt that, because some people have disability tags but they can't tell what's "wrong" with the person, that it means they are free to use the disability spots without a tag if they "really need to go".
This sort of attitude prevents people that actually need to use those spaces from taking advantage of them. I know it does for me. You couldn't tell by looking at me that my lungs, throat, and nose keep me from breathing right. You can't tell from the outside that my energy on a good day is similar to what most people have when they are sick with the flu. You also can't tell the amount of pain I struggle with everyday.
In the same vein, I hear more and more reports of people who need service animals being questioned as to why they need them or they are flat out asked to leave or people will do whatever they can to distract the service animal (petting, offering treats, etc) against the wishes of the person that needs them, even if the animal has its service vest on.
I've often wondered if, because of the steps taken for people to have service animals that can warn for seizures or diabetic sugar spikes or lows, more people have begun to bring their pets into stores. Because a person with a seizure disorder, diabetes, PTSD, or any number of other invisible disabilities don't look "sick" from the outside people are treating this allowance the same as they are treating the disability stalls.
People tend to see disability allowances as some sort of perk or privilege when in reality, these allowances are there so that those of us that qualify can still live normal lives. It wasn't all that long ago when people with disabilities would be locked away or sent away and we've come a long way since that time, we just need to go a little further.
Anyway, with the ADS being legally old enough to rent a car if need be, many people assume that there isn't work to still be done in relation to rights for people with disabilities. If you assume this, you would be wrong. There are still many issues that need to be resolved; such as how prohibitive the process is for people with disabilities that need assistance is when that person decides to marry, or, if the person was married before they needed assistance they are often forced into divorcing their spouse.
Another huge area that needs improvement is in the treatment of, and social perception of, people with invisible disabilities.
One way this is happening is by a push to start using a more inclusive symbol for disabled parking and bathrooms. These new symbols would show not only a person in a wheelchair, but would also demonstrate other ways in which a person may be disabled.
The hope in doing this is that more people will stop judging those with an invisible illness or disability for exercising their legal right for equal access. This may lessen the stigma many of us face by having invisible disabilities.
It is always frustrating to come back to your car and see that someone had left you a nasty note telling you how you're a bad person who is going. It's even worse to know that there are some people out there that equate someone having an invisible disability to them "really being too use the bathroom."
Yes, I have come across someone saying that online. They actually felt that, because some people have disability tags but they can't tell what's "wrong" with the person, that it means they are free to use the disability spots without a tag if they "really need to go".
This sort of attitude prevents people that actually need to use those spaces from taking advantage of them. I know it does for me. You couldn't tell by looking at me that my lungs, throat, and nose keep me from breathing right. You can't tell from the outside that my energy on a good day is similar to what most people have when they are sick with the flu. You also can't tell the amount of pain I struggle with everyday.
In the same vein, I hear more and more reports of people who need service animals being questioned as to why they need them or they are flat out asked to leave or people will do whatever they can to distract the service animal (petting, offering treats, etc) against the wishes of the person that needs them, even if the animal has its service vest on.
I've often wondered if, because of the steps taken for people to have service animals that can warn for seizures or diabetic sugar spikes or lows, more people have begun to bring their pets into stores. Because a person with a seizure disorder, diabetes, PTSD, or any number of other invisible disabilities don't look "sick" from the outside people are treating this allowance the same as they are treating the disability stalls.
People tend to see disability allowances as some sort of perk or privilege when in reality, these allowances are there so that those of us that qualify can still live normal lives. It wasn't all that long ago when people with disabilities would be locked away or sent away and we've come a long way since that time, we just need to go a little further.
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