Wednesday, September 14, 2016

What a Way to Spend a Weekend

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, August 10, 2016


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

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

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!

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.

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.