I learned something this weekend. Cat bites are no good.
For the first time in my entire life, all of those years owning cats, I got bitten by one and it resulted in not one, not two, but three ER trips and a hospital stay.
My hand where the bite is is not happy at all because of the meds I take for Vasculitis my hand immediately developed cellulitis. It's not a good situation. 0 out of 10, I don't recommend being bit by anything.
In other news, I've got my SSI review this month too which makes me nervous.
Wednesday, September 14, 2016
Wednesday, August 10, 2016
Petition
https://www.change.org/p/president-of-the-united-states-has-your-identity-been-trademarked-disability-for-sale?recruiter=5571818&utm_source=petitions_show_components_action_panel_wrapper&utm_medium=copylink
Hey all, I was recently made aware of a group moving to trademark the term "invisible disability" and are preparing to sue people that use the term. This is very similar to how SGK will sue any group that uses the term "the cure" in their slogan.
As you can imagine this is bad for small support groups who are just trying to help people.
Hey all, I was recently made aware of a group moving to trademark the term "invisible disability" and are preparing to sue people that use the term. This is very similar to how SGK will sue any group that uses the term "the cure" in their slogan.
As you can imagine this is bad for small support groups who are just trying to help people.
Monday, July 25, 2016
Health for Sale
I know it's probably something you've all heard before. That medicine and Healthcare costs are way too extreme (at least here in the US, I can only speak to my experience).
You can't go a day without seeing someone post a fundraiser to help someone with medical costs. Usually it's someone who experienced a sudden illness or trauma, and people seem okay with donating to help. Which is awesome.
But I've seen something a little bit different when it comes to a person with a chronic illness asking for help paying medical bills. You may have seen different, and this is just my observations.
It stands to reason that people with chronic health problems will also chronically have to pay for the treatments of said health problems which means they may ask for money more than a person with the one off health incident. When this happens I've noticed on certain social media platforms that the person with a chronic illness gets met with anger or harassment if they've had to ask for help more than once or twice.
I wonder if it has to do with the general attitudes about chronic illnesses from outsiders being that the I'll person just isn't doing enough to "get better". I've seen comments towards people asking for help paying for a medication be told that they should just work harder, or economize and budget better to outright telling the person to just suck it up and make do without.
It's almost like these people don't realize how a chronic conditions works. I'm pretty lucky, I was approved to be placed on SSI and Medicaid. Unfortunately, not many people with chronic illness are so lucky. They may be unable to work, or can only work minimally, and are expected to be able to afford all the necessities (food, shelter, what have you) and their medications.
Just to give some idea I've got a bill from my latest series of infusions
You can't go a day without seeing someone post a fundraiser to help someone with medical costs. Usually it's someone who experienced a sudden illness or trauma, and people seem okay with donating to help. Which is awesome.
But I've seen something a little bit different when it comes to a person with a chronic illness asking for help paying medical bills. You may have seen different, and this is just my observations.
It stands to reason that people with chronic health problems will also chronically have to pay for the treatments of said health problems which means they may ask for money more than a person with the one off health incident. When this happens I've noticed on certain social media platforms that the person with a chronic illness gets met with anger or harassment if they've had to ask for help more than once or twice.
I wonder if it has to do with the general attitudes about chronic illnesses from outsiders being that the I'll person just isn't doing enough to "get better". I've seen comments towards people asking for help paying for a medication be told that they should just work harder, or economize and budget better to outright telling the person to just suck it up and make do without.
It's almost like these people don't realize how a chronic conditions works. I'm pretty lucky, I was approved to be placed on SSI and Medicaid. Unfortunately, not many people with chronic illness are so lucky. They may be unable to work, or can only work minimally, and are expected to be able to afford all the necessities (food, shelter, what have you) and their medications.
Just to give some idea I've got a bill from my latest series of infusions
This is just for a series of 2 infusions that I'm supposed to have every 6 months, this doesn't include the medications I take every day which range in price from about $10 US (managable) to $800 US. Per month. I take 10 different ones that each need to be refilled every month.
Being chronically ill is expensive. Impossibly so if you are poor or don't have decent insurance. If you don't like seeing chronically ill people post about needing money, we need to work to fix the costs of medicine. It's a shame that people have to choose between debt and needed medications or a roof over their head or food.
Wednesday, July 20, 2016
That Moment When....
You are able to return to the GP you were seeing back at the very beginning of your chronic illness journey because your insurance changed.
One of the least annoying things about having to change insurances in order to keep my rheumatologist was being able to return to the GP that I've seen since I was 5. I made an appointment with him so I could reestablish myself as a patient.
It was really good to see him and we talked a bit before he turned to his computer to check my medical records. As he was loading them up he goes, "Let's see what's been going on since you were here last...."
Cue the long list of procedures and tests and hospital visits and an astonished, "Oh" from the doctor.
Then we got to laughing about me having a pill splitter and pill case!
By the way, I've got a new pill case again. My big one wasn't holding up well, sadly. Now I've got one where each day is a separate box that is removable.
It's this one
One of the least annoying things about having to change insurances in order to keep my rheumatologist was being able to return to the GP that I've seen since I was 5. I made an appointment with him so I could reestablish myself as a patient.
It was really good to see him and we talked a bit before he turned to his computer to check my medical records. As he was loading them up he goes, "Let's see what's been going on since you were here last...."
Cue the long list of procedures and tests and hospital visits and an astonished, "Oh" from the doctor.
Then we got to laughing about me having a pill splitter and pill case!
By the way, I've got a new pill case again. My big one wasn't holding up well, sadly. Now I've got one where each day is a separate box that is removable.
It's this one
Thursday, June 2, 2016
The Reason for Awareness Month
I meant to make this post yesterday, but forgot.
Vasculitis Awareness Month is over for another year and I think my game went pretty well. I got lots of new visits to my blog and spoke about vasculitis to many different people!
One really amazing thing happened this month, as well. I had my Rituxan infusions and during the first one I gave my infusion nurse one of the cards I had written out as she asked me what I was doing the infusions for. When I told her that I had vasculitis she told me that she, also, had a type of vasculitis! It was one that I had never heard of before and she told me that for over a year her doctors had been treating it like it was an infection until someone figured it out!
Between patients she was checking out my blog and followed a link to the Vasculitis Foundation where she read the story of someone else whom had the same type of vasculitis she had!
Situations like that are the reason for Awareness Month! And I am so glad that she was able to read about someone else that was dealing with the same thing she was!
Vasculitis Awareness Month is over for another year and I think my game went pretty well. I got lots of new visits to my blog and spoke about vasculitis to many different people!
One really amazing thing happened this month, as well. I had my Rituxan infusions and during the first one I gave my infusion nurse one of the cards I had written out as she asked me what I was doing the infusions for. When I told her that I had vasculitis she told me that she, also, had a type of vasculitis! It was one that I had never heard of before and she told me that for over a year her doctors had been treating it like it was an infection until someone figured it out!
Between patients she was checking out my blog and followed a link to the Vasculitis Foundation where she read the story of someone else whom had the same type of vasculitis she had!
Situations like that are the reason for Awareness Month! And I am so glad that she was able to read about someone else that was dealing with the same thing she was!
Sunday, May 1, 2016
31 Days (Facts) of Vasculitis
For this awareness month I thought I'd play a game of sorts.
I am going to list 31 facts about vasculitis and each fact will have a corresponding note card that I am going to leave somewhere in public or hand to someone or what have you! Each note card will have one fact about vasculitis on it and a link to this blog.
I am hoping people will visit and pass the cards along to others and in this way help me raise awareness!
If you want to play along, write out your own note cards and play the game in your area! Put a link to this blog and take pictures of your cards if your going to play. I hope you will help us in raising awareness for Vasculitis!
1. Vasculitis is an umbrella term for a group of autoimmune disorders that effect a person's blood vessels. From the smallest capillaries to the largest aortas.
2. Vasculitis is treated using drugs that decrease inflammation and weaken the immune system. These drugs include forms of chemotherapy, steroids, and others.
3. Different pea of vasculitis were featured on the tv show 'House' on many different occasions.
4. There are between 14 and 20 different types of vasculitis, each effecting different veins and organs.
5. Each type of vasculitis involves inflammation of the blood vessels which causes the walls of the vessels to thicken, weaken, scar, and narrow which all work to decrease the amount of blood that is able to circulate.
6.Vasculitis has no cure, it is something a person will never be rid of.
7. The goal of treatment in vasculitis is to put a patient into a quiet state where the disease is not actively attacking the blood vessels.
8. Patients with vasculitis see a rheumatologist; the same type of doctor people with lupus or rheumatoid arthritis see.
9. Not all rheumatologists know about vasculitis, so it is important for someone with vasculitis to contact an expert in vasculitis.
10. People with vasculitis may not look sick, even when they are experiencing episodes of active disease.
11. Sometimes, diagnosing vasculitis can be extremely difficult. There are no standard blood tests for it and if a biopsy is not done in the exact right spot it may not show signs of vasculitis.
12. Vasculitis is good at mimicking other diseases, making it even harder to diagnose or determine if a patient is having a flare.
13. The treatments for Vasculitis involve large risks to a patient's health as well.
14. Vasculitis can effect anyone of any age, gender, race, economic status, or country.
15. There are a couple of types of vasculitis where the cause is suspected to be an infection or an allergic reaction, but for the most part the cause of vasculitis is unknown.
16. The most common form of vasculitis is Granulomatosis with Polyangiitis (GPA) which mostly effects small and medium sized vessels and arteries in the kidneys, lungs, and upper respiratory tract, though it is not strictly limited to these areas.
17. Vasculitis makes a person more susceptible to blood clots and strokes.
18. Vasculitis makes a person more susceptible to aneurysms.
19. Vasculitis can cause a person to have permanent organ damage.
20. Vasculitis and it's treatments can make a person much more susceptible to infections.
21. Large vessel vasculitides include Giant Cell Aerteritis, Takayasu' s Aerteritis, Kawasaki' s Disease and Polyaerteritis Nodosa.
22. Medium vessel vasculitides include Kawasaki' s Disease, Polyaerteritis Nodosa, Microscopic Polyangiitis (MPA), Granulomatosis with Polyangiitis (GPA), and Eosenophilic Granulomatosis with Polyangiitis (EGPA).
23. Small vessel vasculitides include IgA Vasculitis, Cryoglobulnemia,Leukocytoclastic vasculitis, MPA, GPA, and EGPA.
24. The Vasculitis Foundation is the leading resource for people with vasculitis.
25. The Vasculitis Foundation has a list of vasculitis experts that are willing to consult with doctors about patients for free.
26. The actor/ director Harold Ramis (known for playing Egon in 'The Ghostbusters') passed away due to complications of vasculitis.
27. Because vasculitis is rare, treatments are often taken from research into other types of autoimmune disorders.
28. The 1956 movie 'Bigger Than Life' is about a man diagnosed with Polyaerteritis Nodosa who is given prednisone.
29. The Vasculitis Foundation was supposed to have a billboard shown in the last episode of 'House' but the scene ended up cut.
30. Vasculitis can be deadly if it is not treated correctly.
31. Patients with vasculitis that are receiving proper treatment can live full lives.
9. Not all rheumatologists know about vasculitis, so it is important for someone with vasculitis to contact an expert in vasculitis.
10. People with vasculitis may not look sick, even when they are experiencing episodes of active disease.
11. Sometimes, diagnosing vasculitis can be extremely difficult. There are no standard blood tests for it and if a biopsy is not done in the exact right spot it may not show signs of vasculitis.
12. Vasculitis is good at mimicking other diseases, making it even harder to diagnose or determine if a patient is having a flare.
13. The treatments for Vasculitis involve large risks to a patient's health as well.
14. Vasculitis can effect anyone of any age, gender, race, economic status, or country.
15. There are a couple of types of vasculitis where the cause is suspected to be an infection or an allergic reaction, but for the most part the cause of vasculitis is unknown.
16. The most common form of vasculitis is Granulomatosis with Polyangiitis (GPA) which mostly effects small and medium sized vessels and arteries in the kidneys, lungs, and upper respiratory tract, though it is not strictly limited to these areas.
17. Vasculitis makes a person more susceptible to blood clots and strokes.
18. Vasculitis makes a person more susceptible to aneurysms.
19. Vasculitis can cause a person to have permanent organ damage.
20. Vasculitis and it's treatments can make a person much more susceptible to infections.
21. Large vessel vasculitides include Giant Cell Aerteritis, Takayasu' s Aerteritis, Kawasaki' s Disease and Polyaerteritis Nodosa.
22. Medium vessel vasculitides include Kawasaki' s Disease, Polyaerteritis Nodosa, Microscopic Polyangiitis (MPA), Granulomatosis with Polyangiitis (GPA), and Eosenophilic Granulomatosis with Polyangiitis (EGPA).
23. Small vessel vasculitides include IgA Vasculitis, Cryoglobulnemia,Leukocytoclastic vasculitis, MPA, GPA, and EGPA.
24. The Vasculitis Foundation is the leading resource for people with vasculitis.
25. The Vasculitis Foundation has a list of vasculitis experts that are willing to consult with doctors about patients for free.
26. The actor/ director Harold Ramis (known for playing Egon in 'The Ghostbusters') passed away due to complications of vasculitis.
27. Because vasculitis is rare, treatments are often taken from research into other types of autoimmune disorders.
28. The 1956 movie 'Bigger Than Life' is about a man diagnosed with Polyaerteritis Nodosa who is given prednisone.
29. The Vasculitis Foundation was supposed to have a billboard shown in the last episode of 'House' but the scene ended up cut.
30. Vasculitis can be deadly if it is not treated correctly.
31. Patients with vasculitis that are receiving proper treatment can live full lives.
Sunday, April 3, 2016
Sunday, March 27, 2016
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!
Monday, January 4, 2016
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.
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.
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.
Monday, June 29, 2015
I Don't Want to be a Mummy
Yes, you read that right.
No, I'm not just saying Mommy with an accent.
Today I had a check up for my sinus surgery so of course that means you get the scope. I don't actually mind the scope all that much, and maybe I'm weird but I like watching the camera move through my sinuses and throat.
Things did not go as planned, though. The sinus that was by far the most damaged is not healing correctly. The skin looks like the skin of my sinus was trying out for the part of Freddy Krueger; all red, inflamed, with sores, and pits and what have you. There was also a scar band started.
That scar band is why I titled this "I Don't Want to be a Mummy" as we saw it on the screen and the doctor suddenly hands me the end of the camera with a "I'm going to need both hands". He then proceeds to pull out of a drawer a giant metal hook with a blunt end.
Immediately, I knew where that hook was supposed to go and I also knew that it wasn't going to be a pleasant experience on my part as thoughts of 6th grade Egypt Studies flashed through my mind.
Anyway, the doctor proceeds to shove the end of the hook in my nose and press it against the little band of scar tissue. And he presses some more. And more. My head was actually being forced backwards as I held the camera in place, but still, that tiny little band must have been made of steel for all the good the hook thingy was doing.
Luckily for me, the doctor decided to stop and we are going to wait and see if A: the scar gets bigger and B: if Freddy Krueger continues to take over the inside of my sinus.
It would be nice if things went smoothly for once, but that's not really to be expected with vasculitis.
No, I'm not just saying Mommy with an accent.
Today I had a check up for my sinus surgery so of course that means you get the scope. I don't actually mind the scope all that much, and maybe I'm weird but I like watching the camera move through my sinuses and throat.
Things did not go as planned, though. The sinus that was by far the most damaged is not healing correctly. The skin looks like the skin of my sinus was trying out for the part of Freddy Krueger; all red, inflamed, with sores, and pits and what have you. There was also a scar band started.
That scar band is why I titled this "I Don't Want to be a Mummy" as we saw it on the screen and the doctor suddenly hands me the end of the camera with a "I'm going to need both hands". He then proceeds to pull out of a drawer a giant metal hook with a blunt end.
Immediately, I knew where that hook was supposed to go and I also knew that it wasn't going to be a pleasant experience on my part as thoughts of 6th grade Egypt Studies flashed through my mind.
Anyway, the doctor proceeds to shove the end of the hook in my nose and press it against the little band of scar tissue. And he presses some more. And more. My head was actually being forced backwards as I held the camera in place, but still, that tiny little band must have been made of steel for all the good the hook thingy was doing.
Luckily for me, the doctor decided to stop and we are going to wait and see if A: the scar gets bigger and B: if Freddy Krueger continues to take over the inside of my sinus.
It would be nice if things went smoothly for once, but that's not really to be expected with vasculitis.
Tuesday, June 23, 2015
Things That Really Grind My Gears
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| I may have already shared this picture during awareness month, but it works for this post. |
When I shared the above meme in some of the vasculitis groups some people commented that we need to give the doctors a break. They study so many other things that the less than a day on average devoted to rare diseases is really all they can fit in.
I understand that. Being a recent college graduate (Bachelor's level, not post graduate level) I get that there is a lot of stuff that goes into being a student and there is no possible way for a person to learn everything about every disease out there. So then why is it that doctors have to fake that they do?
I don't know how many times, how many patient stories I've heard that boil down to: My doctor had no idea about vasculitis but decided to fake it. Or the ever present: My doctor had no idea about vasculitis so they refused to answer any questions about it and instead left me to the less than capable hands of doctor google to try and figure out what to expect. These situations are not right, they should not be happening!
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| Don't even get me started on the doctors that decide to pretend to be experts just so they can dismiss your symptoms as things that are unconnected to your disease | . |
Everyone and their dog seems to know the amount of work that goes into being a doctor, everyone knows that doctors are also human (unless you're going to some futuristic robot doctor) and that there are going to be things they have no idea about. I think that knowing these things means that most people aren't going to have their brains melt down if a doctor says that they aren't sure about this specific disease so they will have to look some things up or will find an expert to send you to. Or maybe a lot of people will have a brain melt down if this happens because doctors aren't known for doing this.
Is it really that much to ask for doctors that are willing to be seen as not an expert in everything that comes to medicine?
I know there are doctors that don't do these things and they are to be treasured. My gp was like this. He only had a vague idea about vasculitis and that it was similar to lupus so you know what he did? He listened to me as to what symptoms I was experiencing and he was not afraid to talk to the other doctors I see that DO know about vasculitis. He would refer me to them if something was out of his scope, but he would do what he could to make sure I knew where about my health stood rather than sending me home to doctor google.
Thursday, June 18, 2015
Surgery Over
So I had my sinuses roto rootered yesterday. Hopefully this will lead to better breathing in the future. It was kind of funny because the surgeon was running ahead of schedule, how often does that happen (?), so he was trying to rush the nurses through putting the IV's and stuff in and he finally just got fed up and came to collect me and take me down to surgery himself because he couldn't stand to wait for the orderlies to do it. The whole trip to the surgical suite other nurses would give him a hard time since he used to be an orderly at that hospital before he became a surgeon.
I had some trouble coming out of the anesthesia, my oxygen wouldn't stay up and my blood pressure kept jogging around. But I am well on the way to mending and will hopefully be able to smell and taste things again! At the very least it will be nice to not have a constant sinus infection.
Have fun all you vascies attending the conference in Florida! I hope you all have a wonderful time and learn lots!
I had some trouble coming out of the anesthesia, my oxygen wouldn't stay up and my blood pressure kept jogging around. But I am well on the way to mending and will hopefully be able to smell and taste things again! At the very least it will be nice to not have a constant sinus infection.
Have fun all you vascies attending the conference in Florida! I hope you all have a wonderful time and learn lots!
Saturday, June 13, 2015
Vasculitis Aesthetic
When you don't have to do smokey eye make-up because the dark circles around them have got that covered for you.
Your clothes become less of a fashion statement than a comfort statement.
You try to see if the phlebotomists have tape that at least sort of matches your outfit.
You have perfected the hospital bed selfie.
That lost look you have on your face when you've forgotten what it is that you were doing for the third time in a row.
Tired. Tired can be an aesthetic. You are unintentionally mimicking that super hot, just rolled out of bed and don't care look that's so popular with college students.... or maybe it's just that those college students are just as tired as you are.
Edit:
This was just shared to me and I think everyone with vasculitis should see and read it. What we have is chronic. It will never go away. We have the right to be frustrated, stressed, worried, and to have our voices heard. We may bottle these emotions up, or we may end up taking them out on the nearest available target. But we are only human. I know many of us feel like we are just spinning our wheels when it comes to life after diagnosis, but it's not true. Every step you take when it comes to your disease, every doctor you visit, every specialist you educate paves the way and makes it easier for those who come behind you.
It's a hard, unfair, road to have to take, but you are taking it and you are doing a good job! So keep going!
Your clothes become less of a fashion statement than a comfort statement.
You try to see if the phlebotomists have tape that at least sort of matches your outfit.
You have perfected the hospital bed selfie.
That lost look you have on your face when you've forgotten what it is that you were doing for the third time in a row.
Tired. Tired can be an aesthetic. You are unintentionally mimicking that super hot, just rolled out of bed and don't care look that's so popular with college students.... or maybe it's just that those college students are just as tired as you are.
Edit:
This was just shared to me and I think everyone with vasculitis should see and read it. What we have is chronic. It will never go away. We have the right to be frustrated, stressed, worried, and to have our voices heard. We may bottle these emotions up, or we may end up taking them out on the nearest available target. But we are only human. I know many of us feel like we are just spinning our wheels when it comes to life after diagnosis, but it's not true. Every step you take when it comes to your disease, every doctor you visit, every specialist you educate paves the way and makes it easier for those who come behind you.
It's a hard, unfair, road to have to take, but you are taking it and you are doing a good job! So keep going!
Tuesday, June 9, 2015
Nobody Nose
One week from tomorrow I will be undergoing more sinus surgery. I'm a little disappointed that I have yet to see any super powers develop from the 3 CT scans I had last month.
I was hoping to at least be able to glow in the dark or something. Those comics have really mislead me on where super powers come from....
Anyway, the scans showed what I suspected. My sinuses are way messed up. One of them above my eye is completely full of tissue that they're going to have to go in and scrape out. On the plus side, this will hopefully solve some of the breathing issues I've been having.
I hope it's not a hard surgery, I know that my last one was pretty simple in terms of recovery time. Of course, that was back before I had been diagnosed so we'll see.
I'm going to keep on raising awareness in my own way and keep on helping out with my local chapter. When I see the memes I've made shared around it makes me happy! That's just what I wanted them to do; go out and spread so that other vascies can get a laugh and share something that will maybe get others to think about Vasculitis!
I was hoping to at least be able to glow in the dark or something. Those comics have really mislead me on where super powers come from....
Anyway, the scans showed what I suspected. My sinuses are way messed up. One of them above my eye is completely full of tissue that they're going to have to go in and scrape out. On the plus side, this will hopefully solve some of the breathing issues I've been having.
I hope it's not a hard surgery, I know that my last one was pretty simple in terms of recovery time. Of course, that was back before I had been diagnosed so we'll see.
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| This is one that I made for awareness month that I didn't put out. |
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