#VasculitisAwareness
Showing posts with label rare disease. Show all posts
Showing posts with label rare disease. Show all posts
Tuesday, May 19, 2015
It's the Brain Foggiest
You
know it's a high brain fog/ exhausted day when you stand outside your
front door for five minutes trying to use the key fob that unlocks your
car to unlock your front door. At least I was hitting the unlock button I
guess.... Hope this makes you all laugh, cause I am.
#VasculitisAwareness
#VasculitisAwareness
Tuesday, May 5, 2015
Oils are no Substitute for Actual Medicine
Sorry for not making a post yesterday. It was my mom's birthday and I never really got the chance to sit down and write so I will post the two memes that I ended up posting yesterday and the meme that is for today!
Okay, now for today's post I wanted to talk a little bit about something that actually happened to a friend of mine that has vasculitis that attacked her kidneys resulting in her needing a new one. She started a facebook page to help her achieve this goal and is using it to document her journey through dialysis and on.
Naturally, a public facebook page is going to get all sorts of people that comment on it, but one person left me floored by their response to one of her posts. They actually told her that they had some oils that would take care of her. Now, I don't know if they were just saying that the oils might help alleviate some pain or if they were actually telling her that instead of a new kidney she should just take some Frankincense.
The sad thing is, while a healthy person might that a suggestion that an oil would work as a cure for us is so silly that no one would do it, but you would be wrong about that. I know many people with chronic illnesses post about their experiences, I know I have posted about my experiences with having people tell me about the so called "miracle cures" they know of. These suggestions are so common there's a square for it on the chronic illness BINGO card.
While I understand that the people that make such suggestions are coming from a place of love and aren't trying to be terrible, the truth of the matter is, they are. When you suggest alternative treatments to a person when they aren't asking for or about them you are derailing what the person is saying about their medical treatment.
When people give me these suggestions I tend to hear one of two things. This,
"I am not a medical doctor, nor have I any experience in or with the medical field aside from going in sometimes when I have a cold but I know better than you and a doctor because I scraped my knee once and this stuff worked on it so it can obviously work for everything else out there 100% of the time."
or
"I am not a medical doctor, nor have I any experience in or with the medical field aside from going in sometimes when I have a cold but I know better than you or a doctor because I believe in all sorts of conspiracy theories including the idea that medical science is actually a business and they want you to have to keep paying them for services. BIGPHARMABIGPHARMABIGPHARMA!"
But at least the first one is coming from a place of love: it worked for them, or at least they thought it worked for them, so it will work for you too. I'm not sure where the other one is coming from, maybe love that took a detour on the fear bus into conspiracy theory town.
The problem is, these statements do harm. They work to try and convince people that they don't have to listen to their doctors. If you have any sort of chronic illness it can become tiresome to take all the medications and do what you need to do to stay healthy; so depending on when someone makes these sorts of suggestions to you it can be really tempting to try it. You are telling us that we should take our hope away from what has been proven to work and place it in an unverified, untested long shot. You are also essentially telling us that we don't know what we're talking about when it comes to our illness and that you, who have no experience with it and more than likely know next to nothing about it, know better than we do. Seriously. Just stop making these suggestions unless you have specifically been asked about some supplement!
The incidence with my friend, though, that lead to the creation of today's Vasculitis Awareness Meme!
 | |
| He was so cute I had to post two of him! |
Naturally, a public facebook page is going to get all sorts of people that comment on it, but one person left me floored by their response to one of her posts. They actually told her that they had some oils that would take care of her. Now, I don't know if they were just saying that the oils might help alleviate some pain or if they were actually telling her that instead of a new kidney she should just take some Frankincense.
The sad thing is, while a healthy person might that a suggestion that an oil would work as a cure for us is so silly that no one would do it, but you would be wrong about that. I know many people with chronic illnesses post about their experiences, I know I have posted about my experiences with having people tell me about the so called "miracle cures" they know of. These suggestions are so common there's a square for it on the chronic illness BINGO card.
While I understand that the people that make such suggestions are coming from a place of love and aren't trying to be terrible, the truth of the matter is, they are. When you suggest alternative treatments to a person when they aren't asking for or about them you are derailing what the person is saying about their medical treatment.
When people give me these suggestions I tend to hear one of two things. This,
"I am not a medical doctor, nor have I any experience in or with the medical field aside from going in sometimes when I have a cold but I know better than you and a doctor because I scraped my knee once and this stuff worked on it so it can obviously work for everything else out there 100% of the time."
or
"I am not a medical doctor, nor have I any experience in or with the medical field aside from going in sometimes when I have a cold but I know better than you or a doctor because I believe in all sorts of conspiracy theories including the idea that medical science is actually a business and they want you to have to keep paying them for services. BIGPHARMABIGPHARMABIGPHARMA!"
 |
But at least the first one is coming from a place of love: it worked for them, or at least they thought it worked for them, so it will work for you too. I'm not sure where the other one is coming from, maybe love that took a detour on the fear bus into conspiracy theory town.
The problem is, these statements do harm. They work to try and convince people that they don't have to listen to their doctors. If you have any sort of chronic illness it can become tiresome to take all the medications and do what you need to do to stay healthy; so depending on when someone makes these sorts of suggestions to you it can be really tempting to try it. You are telling us that we should take our hope away from what has been proven to work and place it in an unverified, untested long shot. You are also essentially telling us that we don't know what we're talking about when it comes to our illness and that you, who have no experience with it and more than likely know next to nothing about it, know better than we do. Seriously. Just stop making these suggestions unless you have specifically been asked about some supplement!
The incidence with my friend, though, that lead to the creation of today's Vasculitis Awareness Meme!
Wednesday, February 25, 2015
Error 404 Vein not Found
 |
| I know this is so passe and last year, but I had to make one |
I had to make this when I got home from my Rituxan infusion today, it was nice to have an oncology nurse that had actually heard about Wegener's and knew my rhuematologist.
On the other hand, this had been around a while so when she expressed some puzzlement over what was going on with my veins and IV that it had to make me laugh.
For once I had a relatively easy IV placement. She went in through the side of my arm just below my wrist, she got the catheter in on the first try and it seemed that the vein was going to take the entire catheter rather than just the very tippy end of the catheter like it usually does. Then when she checked the IV with saline it started to burn a little. I didn't think anything of it, except that sometimes the saline burns. When she put the steroid in the IV it really started to hurt so I asked her to check it again to make sure that the IV hadn't infiltrated. She un-bandaged the IV and everything looked okay so she decided to put more saline through it.
At this time, for some reason, I feel like I am about ready to pass out. Everything has gone down to a pinpoint, I'm starting to get a little sweaty, and shaky feeling. Not something that has ever happened to me when I've had other IV's (which has happened often enough I should know how I normally react) placed.
The nurse looks up from the IV site and says, "I've never seen one do that before." I was expecting a lump or some other signs of infiltration but she said there was nothing like that, but every time she would depress the plunger on the saline my entire arm from my wrist to my elbow would blanch.
We ended up backing the IV out a bit and everything worked better after that. We're not sure why it happened, but it's always interesting when you can show long time oncology nurses things that they've never seen before.
Wednesday, December 3, 2014
Yoga vs Me
Oh man, I made the mistake of going to a yoga class with my mother last night. Cue me sleeping in to 1:00pm today and waking up so stiff and painful that I can hardly move. Arthritis and yoga do not mix. I snap, crackled, and popped through as many of the poses as I could but downward dog is just not my friend. Not to mention lung and connective tissue problems makes it really hard to breath during said stretches. Let's not even start on attempting to balance.
It was an experience for sure.
Next time, I will bring a chair so that I can modify the poses to be easier for me to handle.
If you would like to try it, here is a link to a lady who specializes in yoga for arthritis and she has instructional videos on youtube!
https://www.youtube.com/user/KimMcNeilYoga
PS sorry for the sporadic updates.
Monday, August 5, 2013
Random Health Advice From a Booth at the Farmer's Market
This is kind of a funny story, if only because it's become such a common experience for me that it's sad.
On Saturday, my mom, grandmother, and I decided to wander around the local Farmer's Market just to scout out the local goods. Besides all of the usual home baked goods, hand crafted items, and vegetables there was a booth advertising free nerve scans. I was kind of curious so as my mom and grandmother looked at the booth next door which had some really amazing handmade jewelry I would have myself a nerve scan.
To start off, the had me fill in a paper with lists of ailments that you were supposed to circle if you had them. I had all of them, as expected for someone with a systemic autoimmune disorder. Wherein the lady running the booth told me that she just wouldn't live with all those problems. I told her, I don't either. That's what I see doctors for and what I take medications for, duh.
They asked me what exactly it is that I have and I told them Wegener's Granulomatosis. Now, I'm used to the very blank stares that this disease gets, but for this lady her blank stare was immediately followed by a determined look because she figured that what she was promoting could absolutely cure me.
She put the wand up to my neck and began the scan, which, as I expected, lit up like some demented form of Christmas Tree. You know, when you don't have decent veins things get kind of starved for essentials. After looking at the scan the lady then starts spouting off about how they can do back adjustments to fix all of my problems because pinched nerves were probably what was causing the Wegener's. All I could think was, did you miss the part where I said it was an autoimmune disorder, you know, kind of like Lupus. You're back adjustment is not going to cure something that has a genetic component. She wanted me to go in to her clinic and get X-rays and all sorts of weird stuff.
I never even saw a sign on her booth advertising her as a chiropractor or anything of the sort. I politely told her that I would have to think about it, even though I have no plans to call her back or answer the phone if she calls me.
Sadly, this is a common occurrence when you have a chronic illness. Everyone seems to think they can "cure" you and they tend to ignore the whole part about it being a CHRONIC illness. I'm not against alternative methods, but if you choose to look into them, you really need to have a critical eye. Be wary of the people that claim to have a cure; more than likely they do not and are just trying to get money from you. They probably don't care that they could potentially be causing you damage or even killing you. If you have a doctor that you trust, which is an absolute must, bring anything you want to try in regards to your health up with them.
On Saturday, my mom, grandmother, and I decided to wander around the local Farmer's Market just to scout out the local goods. Besides all of the usual home baked goods, hand crafted items, and vegetables there was a booth advertising free nerve scans. I was kind of curious so as my mom and grandmother looked at the booth next door which had some really amazing handmade jewelry I would have myself a nerve scan.
To start off, the had me fill in a paper with lists of ailments that you were supposed to circle if you had them. I had all of them, as expected for someone with a systemic autoimmune disorder. Wherein the lady running the booth told me that she just wouldn't live with all those problems. I told her, I don't either. That's what I see doctors for and what I take medications for, duh.
They asked me what exactly it is that I have and I told them Wegener's Granulomatosis. Now, I'm used to the very blank stares that this disease gets, but for this lady her blank stare was immediately followed by a determined look because she figured that what she was promoting could absolutely cure me.
She put the wand up to my neck and began the scan, which, as I expected, lit up like some demented form of Christmas Tree. You know, when you don't have decent veins things get kind of starved for essentials. After looking at the scan the lady then starts spouting off about how they can do back adjustments to fix all of my problems because pinched nerves were probably what was causing the Wegener's. All I could think was, did you miss the part where I said it was an autoimmune disorder, you know, kind of like Lupus. You're back adjustment is not going to cure something that has a genetic component. She wanted me to go in to her clinic and get X-rays and all sorts of weird stuff.
I never even saw a sign on her booth advertising her as a chiropractor or anything of the sort. I politely told her that I would have to think about it, even though I have no plans to call her back or answer the phone if she calls me.
Sadly, this is a common occurrence when you have a chronic illness. Everyone seems to think they can "cure" you and they tend to ignore the whole part about it being a CHRONIC illness. I'm not against alternative methods, but if you choose to look into them, you really need to have a critical eye. Be wary of the people that claim to have a cure; more than likely they do not and are just trying to get money from you. They probably don't care that they could potentially be causing you damage or even killing you. If you have a doctor that you trust, which is an absolute must, bring anything you want to try in regards to your health up with them.
Wednesday, May 29, 2013
Back from the depths of somewhere
That title up there, I am not considering it a binding contract so if I disappear for a while again I made you no promises so don't even go there.
Can you believe that it's been over two years since I've had a name for the horrible monster lurking in my imaginary health closet for so long? Two years. In those two years I've laughed, I've cried, I've cried, I've sobbed, and I've been angered, but I blame all of that on the prednisone. I can't say that I've gotten used to my new life as a stay at home slouch who has watched most everything Netflix has to offer, but I can at least tolerate it. Hey, someone has to be able to answer all of those pop culture questions on Jeopardy.
All I can say to those people that are new to this journey is that, you have to keep living, and when people try to give you unsolicited health advice take it with a grain of salt, a shot of tequila, and move on with your life. If you're feeling feisty try and explain them a thing but they probably won't listen anyway.
Can you believe that it's been over two years since I've had a name for the horrible monster lurking in my imaginary health closet for so long? Two years. In those two years I've laughed, I've cried, I've cried, I've sobbed, and I've been angered, but I blame all of that on the prednisone. I can't say that I've gotten used to my new life as a stay at home slouch who has watched most everything Netflix has to offer, but I can at least tolerate it. Hey, someone has to be able to answer all of those pop culture questions on Jeopardy.
All I can say to those people that are new to this journey is that, you have to keep living, and when people try to give you unsolicited health advice take it with a grain of salt, a shot of tequila, and move on with your life. If you're feeling feisty try and explain them a thing but they probably won't listen anyway.
Wednesday, May 2, 2012
Vasculitis Awareness Month!
It's that month of the year again! Vasculitis Awareness Month, or May as normal people call it.
Look guys, I'm internet famous for vasculitis. Not exactly what I was planning on, but hey. Someone even asked me if they could put my video in a documentary about vasculitis. I said sure even though I think I look and sound like a complete goob in it.
Sorry if I didn't look like what you thought I did. When I made this video I didn't have plans on it being posted anywhere, but since the VF put it on youtube I figured, "What the hey- People are gonna see it now."
Look guys, I'm internet famous for vasculitis. Not exactly what I was planning on, but hey. Someone even asked me if they could put my video in a documentary about vasculitis. I said sure even though I think I look and sound like a complete goob in it.
Tuesday, November 22, 2011
Giving Thanks
I'm going to post this a few days early because, this is me we're talking about, do you think I could remember to post it on Thanksgiving?
I read an article a few weeks ago about quality of life issues involved with vasculitis and it is what originally got me thinking (along with a serendipitous comment on my Lonely Girl post by Sue Z) what I have to be thankful for. Sometimes it can be very hard for me to see what I have going for me and a reminder is needed to pull me out of a funk. Also, in light of my friend's recent passing I thought about how it is a good time to reflect on what I've got going for me in my life.
My Family: I am recently turned 25 and am completely dependent upon my parents at the moment. At the time of my diagnosis I was working and saving up to move out on my own. After diagnosis I could not live by myself, let alone afford it due to hospital, doctors, and medication costs. Now that I am not working and am being told that I need to stay out of work for at least a year I have become even more dependent upon them.
They are still trying to encourage me in my aspirations, even if I have been forced to change them drastically. They still talk with me about things I want to do one day, such as travel, that I know I might have to ask them to accompany me even if they don't particularly want to go.
My family has always been supportive of me; my mom goes to most of my appointments with me, and if she can't be there my dad is. I also know that if neither of them can make it my grandfather would be there at the drop of a hat. Speaking of my grandparents, the day after I went to the ER and the day after I was released from the hospital from my recent surgery they welcomed me to stay at their house to make sure that I got my pain meds and to take care of me while my parents were at work. While this is kind of embarrassing, I know of many people whose grandparents would not be so willing to help them.
My siblings have really stepped up and supported me in their own ways as well. I know I end up venting a lot of my frustrations to my sister.
I think most importantly, my family has been willing to put up with the many side effects caused by my medications. They take it in stride when I burst into tears over the stupidest things, or when I forget what I am looking for or what I was speaking to them about, or even what words I am trying to think of when I am speaking to them. They were even willing to accommodate my new dietary needs. My chemo makes me very nauseated and I find it hard to eat red meat, my family is very carnivorous but they were willing to get me other things that I could eat and didn't make a big deal about when I needed to vomit.
There are many other, small things, that my family does for me, but it would take too long to list them all.
My Friends: I know that many people have lost friends because of their illnesses, and while I've had relationships change, many of my friends have treated me the same now as they ever have. Except for now putting up with certain rules I have to follow in regards to being ill and certain things I cannot do anymore. I've had to have some conversations with some, expressing concerns of mine, but this has not caused them to leave me completely.
I have also made many new friends through the VF whose knowledge I rely on and whose support make my journey easier to handle. I wish I had met them under different circumstances, but this was not meant to be. I just hope that I am as helpful to them as they are for me. I try, but I really don't have much experience living with something like this yet.
I am also thankful that I seem to be getting better health care than some. My rheumatologists are knowledgeable and are willing to listen to my concerns and take them into account. They want to do what would be best for me, even when I am being bull headed and just don't want to listen anymore. This situation happens a lot more than you probably think.
I am also thankful that I am able to go outside and do still have some measure of independence. I've had to give up a lot, but not everything.
I am thankful that I was given a chance to discover what I really wanted to do with my life, and that Wegener's has given me a chance to figure out what sort of person I really am and what is important to me.
I am thankful that I am healing, even if it doesn't seem like it some days.
Most importantly, I am thankful that I am still alive. I am here, able to type, read, listen to music, dance around, laugh and see people I love everyday. It wasn't so certain this time last year.
There's probably more that I am thankful for, but it would take far too long to work it all out. Some of what I am thankful for I cannot possibly describe here, even. If anything, this year has taught me that I don't know when I'm going to go, but when I get hit hard I always manage to bounce back. Take the time to stop and smell the roses; think about what you are thankful for, all the little good things that make up your life, list a few of them if you can. The world is so dark sometimes that you have to really focus on what you love about it so that you don't get bogged down in the dark. Just think, the dark makes the little bits of light seem to glow even brighter!
I read an article a few weeks ago about quality of life issues involved with vasculitis and it is what originally got me thinking (along with a serendipitous comment on my Lonely Girl post by Sue Z) what I have to be thankful for. Sometimes it can be very hard for me to see what I have going for me and a reminder is needed to pull me out of a funk. Also, in light of my friend's recent passing I thought about how it is a good time to reflect on what I've got going for me in my life.
My Family: I am recently turned 25 and am completely dependent upon my parents at the moment. At the time of my diagnosis I was working and saving up to move out on my own. After diagnosis I could not live by myself, let alone afford it due to hospital, doctors, and medication costs. Now that I am not working and am being told that I need to stay out of work for at least a year I have become even more dependent upon them.
They are still trying to encourage me in my aspirations, even if I have been forced to change them drastically. They still talk with me about things I want to do one day, such as travel, that I know I might have to ask them to accompany me even if they don't particularly want to go.
My family has always been supportive of me; my mom goes to most of my appointments with me, and if she can't be there my dad is. I also know that if neither of them can make it my grandfather would be there at the drop of a hat. Speaking of my grandparents, the day after I went to the ER and the day after I was released from the hospital from my recent surgery they welcomed me to stay at their house to make sure that I got my pain meds and to take care of me while my parents were at work. While this is kind of embarrassing, I know of many people whose grandparents would not be so willing to help them.
My siblings have really stepped up and supported me in their own ways as well. I know I end up venting a lot of my frustrations to my sister.
I think most importantly, my family has been willing to put up with the many side effects caused by my medications. They take it in stride when I burst into tears over the stupidest things, or when I forget what I am looking for or what I was speaking to them about, or even what words I am trying to think of when I am speaking to them. They were even willing to accommodate my new dietary needs. My chemo makes me very nauseated and I find it hard to eat red meat, my family is very carnivorous but they were willing to get me other things that I could eat and didn't make a big deal about when I needed to vomit.
There are many other, small things, that my family does for me, but it would take too long to list them all.
My Friends: I know that many people have lost friends because of their illnesses, and while I've had relationships change, many of my friends have treated me the same now as they ever have. Except for now putting up with certain rules I have to follow in regards to being ill and certain things I cannot do anymore. I've had to have some conversations with some, expressing concerns of mine, but this has not caused them to leave me completely.
I have also made many new friends through the VF whose knowledge I rely on and whose support make my journey easier to handle. I wish I had met them under different circumstances, but this was not meant to be. I just hope that I am as helpful to them as they are for me. I try, but I really don't have much experience living with something like this yet.
I am also thankful that I seem to be getting better health care than some. My rheumatologists are knowledgeable and are willing to listen to my concerns and take them into account. They want to do what would be best for me, even when I am being bull headed and just don't want to listen anymore. This situation happens a lot more than you probably think.
I am also thankful that I am able to go outside and do still have some measure of independence. I've had to give up a lot, but not everything.
I am thankful that I was given a chance to discover what I really wanted to do with my life, and that Wegener's has given me a chance to figure out what sort of person I really am and what is important to me.
I am thankful that I am healing, even if it doesn't seem like it some days.
Most importantly, I am thankful that I am still alive. I am here, able to type, read, listen to music, dance around, laugh and see people I love everyday. It wasn't so certain this time last year.
There's probably more that I am thankful for, but it would take far too long to work it all out. Some of what I am thankful for I cannot possibly describe here, even. If anything, this year has taught me that I don't know when I'm going to go, but when I get hit hard I always manage to bounce back. Take the time to stop and smell the roses; think about what you are thankful for, all the little good things that make up your life, list a few of them if you can. The world is so dark sometimes that you have to really focus on what you love about it so that you don't get bogged down in the dark. Just think, the dark makes the little bits of light seem to glow even brighter!
 |
| Also, Snoopy. I am thankful for Snoopy and Charlie Brown. |
Tuesday, November 15, 2011
Happy Birthday!
I meant to make a post yesterday, but forgot.
25 years ago on November 14th during the wee hours of the morning I was born. Little did anyone know the crazy turns my life would have taken in its 25 years, but I like to think that those twists have given me experience and perspective. None so much as what I have experienced over the course of this last year, though.
It was kind of funny, even with the last few months being pretty terrible as far as life goes. Having to leave my job for medical reasons, bills stacking up that I have no way to pay, having to leave my Master's program because I would be unable to do the classroom visit requirements and being told by the Social Security Office that I "hadn't worked long enough" to qualify for Disability. That last one might work itself out, though, because I do qualify for SSI. Of course they have 90 days to decide if they are going to give it to me or not and the process normally involves several rejections.
Even with all of this going on I had a pretty wonderful birthday. I think part of this is because I have a new perspective about things. I have come really close to hitting bottom and have no where left to go but up. I've done a lot of thinking lately (I have the luxury of the time to think) and had come to the conclusion that I've got everything I could possibly need or want so when my mom asked me what I wanted as a gift for my birthday there was literally nothing I could think of.
The best gifts I got were the time I spent hanging out with my mom and sister, going window shopping. Even though I had to stop and get a wheelchair midway through the day I was grateful to have the ability to go out and do this.
On my birthday itself I had a doctors appointment with my rheumatologist. We discussed the symptoms that have been constant for me and talked a little bit about doing a stronger form of chemotherapy. The ultimate decision was that we are going to wait a little bit and see if the bigger symptoms calm down (I did just have surgery) and to see what my lab work looks like.
While there I was able to talk with their phlebotomist, she is the only person that has ever been able to get blood from me without significant pain and bruising. She has also never burst any of my vessels. I spoke with her for a bit about the problems they had getting my per-surgery blood work. The day I went in to them was a poor circulation day in my hands, they were literally blue and even holding them under hot water would not warm them. My hands are the only place where anyone can get blood from me without a lot of problems.
After three tries and not even a flash into the needle, they got someone else to come try. This new person didn't listen to me when I said she needed to use a butterfly needle because the other needles are larger than my veins. She decided to try for a spot along the "suicide track" down the underside of my forearm just under my wrist. In doing this she burst two of those veins and I went into surgery with a black arm.
I explained this to Sabrina, the phlebotomist at my rheumatologists office and she flat out told me that because I was a patient of hers, all I need to do is get the blood work order from the doctor, bring it to her and she can draw the blood and run the tests for me. This is a life saver!
Afterwards I went out to lunch with my mom and later that evening my dad brought home a cake. One that he searched for and had to ask the bakery to get from the back specifically because it was the only vanilla cake they had. The rest were chocolate. I love that he was willing to go to extra lengths to find one that I like even when I know he isn't feeling his best either.
My birthday was wonderful.
25 years ago on November 14th during the wee hours of the morning I was born. Little did anyone know the crazy turns my life would have taken in its 25 years, but I like to think that those twists have given me experience and perspective. None so much as what I have experienced over the course of this last year, though.
It was kind of funny, even with the last few months being pretty terrible as far as life goes. Having to leave my job for medical reasons, bills stacking up that I have no way to pay, having to leave my Master's program because I would be unable to do the classroom visit requirements and being told by the Social Security Office that I "hadn't worked long enough" to qualify for Disability. That last one might work itself out, though, because I do qualify for SSI. Of course they have 90 days to decide if they are going to give it to me or not and the process normally involves several rejections.
Even with all of this going on I had a pretty wonderful birthday. I think part of this is because I have a new perspective about things. I have come really close to hitting bottom and have no where left to go but up. I've done a lot of thinking lately (I have the luxury of the time to think) and had come to the conclusion that I've got everything I could possibly need or want so when my mom asked me what I wanted as a gift for my birthday there was literally nothing I could think of.
The best gifts I got were the time I spent hanging out with my mom and sister, going window shopping. Even though I had to stop and get a wheelchair midway through the day I was grateful to have the ability to go out and do this.
On my birthday itself I had a doctors appointment with my rheumatologist. We discussed the symptoms that have been constant for me and talked a little bit about doing a stronger form of chemotherapy. The ultimate decision was that we are going to wait a little bit and see if the bigger symptoms calm down (I did just have surgery) and to see what my lab work looks like.
While there I was able to talk with their phlebotomist, she is the only person that has ever been able to get blood from me without significant pain and bruising. She has also never burst any of my vessels. I spoke with her for a bit about the problems they had getting my per-surgery blood work. The day I went in to them was a poor circulation day in my hands, they were literally blue and even holding them under hot water would not warm them. My hands are the only place where anyone can get blood from me without a lot of problems.
After three tries and not even a flash into the needle, they got someone else to come try. This new person didn't listen to me when I said she needed to use a butterfly needle because the other needles are larger than my veins. She decided to try for a spot along the "suicide track" down the underside of my forearm just under my wrist. In doing this she burst two of those veins and I went into surgery with a black arm.
I explained this to Sabrina, the phlebotomist at my rheumatologists office and she flat out told me that because I was a patient of hers, all I need to do is get the blood work order from the doctor, bring it to her and she can draw the blood and run the tests for me. This is a life saver!
Afterwards I went out to lunch with my mom and later that evening my dad brought home a cake. One that he searched for and had to ask the bakery to get from the back specifically because it was the only vanilla cake they had. The rest were chocolate. I love that he was willing to go to extra lengths to find one that I like even when I know he isn't feeling his best either.
My birthday was wonderful.
Sunday, August 14, 2011
Cavities
So, I just realized that in all of my posts I had been spelling Wegener's wrong. Out of both words in the disease name, I get the short and easy one wrong. Yup. Also, try typing in Wegener's Granulomatosis into google and search images.
Are you now scarred for life? Scary stuff. And then you see that there is a picture displaying a plate of food about halfway down the page. Wonder what that is doing there. I certainly don't know.
Anywho, I went to the pulmonologist on Friday (it was the Dawn of the Doctor's Appointments as I went to see a new primary physician). Got my usual tests run, chest X-ray and what not. My breathing is good, oxygen levels never dipped below 90. But my X-ray looks like I might have something going on that needs to be kept an eye on.
In my tradition of never doing anything less than 110% I got what is possibly my first ever cavity. Of course, it can't be in my teeth, no, this one looks like it is in my lung. Maybe. The only way we can know for sure is if I get an MRI or a high contrast CT of my lung. This isn't something my Dr wants done right away as it doesn't seem to be bothering or effecting me too much and I need a CT of my sinuses more so than one on my lung.
I have a stuffy nose and with my previous MRSA infections she thought is was a good idea to test me for it again. If it comes back positive, I need to get a CT to see if it is in my sinuses. Having an antibiotic resistant staff infection next to my brain would probably not be the best thing for my health.
We'll see how this episode turns out probably next time on A Little Life Comma (also we'll continue looking at other forms of Vasculitis).
Are you now scarred for life? Scary stuff. And then you see that there is a picture displaying a plate of food about halfway down the page. Wonder what that is doing there. I certainly don't know.
Anywho, I went to the pulmonologist on Friday (it was the Dawn of the Doctor's Appointments as I went to see a new primary physician). Got my usual tests run, chest X-ray and what not. My breathing is good, oxygen levels never dipped below 90. But my X-ray looks like I might have something going on that needs to be kept an eye on.
In my tradition of never doing anything less than 110% I got what is possibly my first ever cavity. Of course, it can't be in my teeth, no, this one looks like it is in my lung. Maybe. The only way we can know for sure is if I get an MRI or a high contrast CT of my lung. This isn't something my Dr wants done right away as it doesn't seem to be bothering or effecting me too much and I need a CT of my sinuses more so than one on my lung.
I have a stuffy nose and with my previous MRSA infections she thought is was a good idea to test me for it again. If it comes back positive, I need to get a CT to see if it is in my sinuses. Having an antibiotic resistant staff infection next to my brain would probably not be the best thing for my health.
We'll see how this episode turns out probably next time on A Little Life Comma (also we'll continue looking at other forms of Vasculitis).
Monday, August 8, 2011
Saturday, August 6, 2011
Creeping Up Behind
to attack you when you least expect it!
I spend the entire week trying to take things easy so that I can be well rested for a date today, but no. Wegner's doesn't care about all my precautions, it doesn't care that I have plans, it doesn't even particularly care that it is really cramping my style. In fact, doing the opposite of these things is Wegner's goal I have come to believe.
I won't let it win. I am still going to go on my date (it's a get to know you date) even if my leg is all swollen and achy today, even if I feel gut punched, even, YES EVEN!, if I woke up with a nasty bloody nose this morning! Some of you might think it's silly of me, but I have really been looking forward to going out with this guy and I am going to do it.
Whether it kills me or not!
Except instead of Khan it says WEGNER'S and I would probably be shaking my fist.
I spend the entire week trying to take things easy so that I can be well rested for a date today, but no. Wegner's doesn't care about all my precautions, it doesn't care that I have plans, it doesn't even particularly care that it is really cramping my style. In fact, doing the opposite of these things is Wegner's goal I have come to believe.
I won't let it win. I am still going to go on my date (it's a get to know you date) even if my leg is all swollen and achy today, even if I feel gut punched, even, YES EVEN!, if I woke up with a nasty bloody nose this morning! Some of you might think it's silly of me, but I have really been looking forward to going out with this guy and I am going to do it.
Whether it kills me or not!
Thursday, August 4, 2011
Churgg-Strauss Syndrome (CSS)
Finally I get around to doing something I said I was going to!
On the list of Vasculitis, Churgg-Strauss Syndrome is another type of ANCA associated vasculitis which makes it a closer cousin to Wegner's than, say, TAK (which we will also get to eventually!).
CSS is also systemic (multiple systems) and shares some common symptoms with PAN (polyarteritis nodosa) which is another type of vasculitis. What makes this type different from PAN, though, is the presence of granulomas and eosinophils in the blood (an eosinophil is a type of white blood cell which usually only compromises about 5% or less of a person's total blood count, in a person with CSS they can make up as much as 60% of a person's blood count). Also, the ANCA's.
The "typical patient" (though we all know how this typical patient stuff works. If we went by that I should be a middle aged man of European decent) is a middle aged person, distribution between male and female is roughly equal, with new onset, or newly worsened asthma.
Now, for a long time my Wegner's also presented itself as asthma, but it is one of the defining features of CSS and CSS is the only type of vasculitis where asthma is a defining characteristic. This doesn't mean that everyone who has asthma has CSS, only a very small minority do, but everyone who has CSS has asthma. Other symptoms include nasal polyps and allergic rhinitis. After this it moves on to the presence of eosinophils in the blood. Finally, the disease will move into the vasculitis stage. Much like Wegner's, CSS can go anywhere in the body. Wegner's doesn't often go for the heart, but CSS can and does. The heart and kidney's seem to be CSS's big organs of choice (at least according to Johns Hopkins) with a smaller likelyhood of it causing damage to the lungs. Which seems odd to me considering that ASTHMA is one of its defining features but apparently only 1/3 of CSS patients get lung infiltrates with even less getting bleeding into the lungs and an even smaller amount than that getting lung disease.
Like most other forms of vasculitis, until doctors figured out that "Hey, Prednisone and chemo therapy, when used to together, induces remission!" which means that far fewer patients with vasculitis now die from their disease than before. Previously CSS, like Wegner's, was 100% fatal. It's good to know that we are improving in this area.
That's CSS in a nutshell!
On the list of Vasculitis, Churgg-Strauss Syndrome is another type of ANCA associated vasculitis which makes it a closer cousin to Wegner's than, say, TAK (which we will also get to eventually!).
CSS is also systemic (multiple systems) and shares some common symptoms with PAN (polyarteritis nodosa) which is another type of vasculitis. What makes this type different from PAN, though, is the presence of granulomas and eosinophils in the blood (an eosinophil is a type of white blood cell which usually only compromises about 5% or less of a person's total blood count, in a person with CSS they can make up as much as 60% of a person's blood count). Also, the ANCA's.
The "typical patient" (though we all know how this typical patient stuff works. If we went by that I should be a middle aged man of European decent) is a middle aged person, distribution between male and female is roughly equal, with new onset, or newly worsened asthma.
Now, for a long time my Wegner's also presented itself as asthma, but it is one of the defining features of CSS and CSS is the only type of vasculitis where asthma is a defining characteristic. This doesn't mean that everyone who has asthma has CSS, only a very small minority do, but everyone who has CSS has asthma. Other symptoms include nasal polyps and allergic rhinitis. After this it moves on to the presence of eosinophils in the blood. Finally, the disease will move into the vasculitis stage. Much like Wegner's, CSS can go anywhere in the body. Wegner's doesn't often go for the heart, but CSS can and does. The heart and kidney's seem to be CSS's big organs of choice (at least according to Johns Hopkins) with a smaller likelyhood of it causing damage to the lungs. Which seems odd to me considering that ASTHMA is one of its defining features but apparently only 1/3 of CSS patients get lung infiltrates with even less getting bleeding into the lungs and an even smaller amount than that getting lung disease.
Like most other forms of vasculitis, until doctors figured out that "Hey, Prednisone and chemo therapy, when used to together, induces remission!" which means that far fewer patients with vasculitis now die from their disease than before. Previously CSS, like Wegner's, was 100% fatal. It's good to know that we are improving in this area.
That's CSS in a nutshell!
Monday, July 25, 2011
Anti-Neutrophragalisticexpialadocious
Anti-Neutrophilic Cytoplasmic Antibodies, better known as ANCA's to those of us with diseases that have them. There are three different types of vasculitis that have these special little antibodies present, in most cases the presence of these are used as a diagnostic tool which helped save me from having a lung biopsy. These little buggers are also known as autoantibodies because they differ from regular, helpful antibodies. Bet you can't guess how they differ exactly.
Auto means self. So these autoantibodies do what regular antibodies do but against the self. Yes, if you have Wegner's, MPA (Microscopic Polyangitis) or Churg-Strauss Vasculitis your body has created antibodies just for the purpose of harming your own personal cells.
Of course, you could also have one of these diseases and not have these autoantibodies present. Is anyone else reminded of the Transformers? Autoantibodies, form up! No, wait, don't! I might die!
There are specific types of ANCAS associated with these different vasculitis types. Wegner's is a C-ANCA (80% of patients test positive. I test slightly positive, sometimes, when I'm not testing positive for a different ANCA). Oddly enough, Wegner's shares this ANCA with mad cow disease. At least, that's what I've heard. Wegner's can also test positive for a P-ANCA, the same ANCA associated with Lupus. Does this mean I'm a Lupy Cow instead of a Mad Cow?
Anways, these are the three types of vasculitis that are associated with ANCA so I figure that it would be a good place to start introducing the other 15 forms of vasculitis. Starting with MPA and then probably Churg-Strauss and moving on from there. I feel it is important to try to understand the different forms of vasculitis as a patient with Wegner's because it is A) possible to have more than one type of vasculitis B) having one autoimmune disorder makes you MORE likely to have another and C) while different, each type of vasculitis have their similarities.
Auto means self. So these autoantibodies do what regular antibodies do but against the self. Yes, if you have Wegner's, MPA (Microscopic Polyangitis) or Churg-Strauss Vasculitis your body has created antibodies just for the purpose of harming your own personal cells.
Of course, you could also have one of these diseases and not have these autoantibodies present. Is anyone else reminded of the Transformers? Autoantibodies, form up! No, wait, don't! I might die!
There are specific types of ANCAS associated with these different vasculitis types. Wegner's is a C-ANCA (80% of patients test positive. I test slightly positive, sometimes, when I'm not testing positive for a different ANCA). Oddly enough, Wegner's shares this ANCA with mad cow disease. At least, that's what I've heard. Wegner's can also test positive for a P-ANCA, the same ANCA associated with Lupus. Does this mean I'm a Lupy Cow instead of a Mad Cow?
Anways, these are the three types of vasculitis that are associated with ANCA so I figure that it would be a good place to start introducing the other 15 forms of vasculitis. Starting with MPA and then probably Churg-Strauss and moving on from there. I feel it is important to try to understand the different forms of vasculitis as a patient with Wegner's because it is A) possible to have more than one type of vasculitis B) having one autoimmune disorder makes you MORE likely to have another and C) while different, each type of vasculitis have their similarities.
Tuesday, July 12, 2011
The "D" Word
Which 'D' word is that, you might ask. There are plenty of words that start with a 'D' both lower and upper case, but I am here only referring to one singular 'D' word. And it isn't Damnation or any variation there of.
No, that 'D' word is..... Dating.
It was bound to come up sometime. I am a reasonably undisfigured 24-year-old female, I have every right to think about dating (so do those reasonably and unreasonably disfigured 24-year-olds for that matter. I don't really care, I actually encourage you!).
Alright, dating isn't really easy on most people. It's can be unpleasant and awkward. You might not know what to say, you might make an idiot of yourself and so many things can go wrong in so many places that it might not ever seem worth it to try again. But, as a social animal we do continue to try, somewhat, it's just the way things go.
So, let's just say that prior to diagnosis I was doing fair in the dating department. Even went out with the same guy more than once (which is somewhat of an anomaly in my dating stats) but things didn't work out. It was more me than him, and I partially blame me getting sick for some of it. You see, around the time he wanted to start picking things up, I was starting to feel really crappy (fatigue, chronic hacking cough, aches, pains, a general lack of walking ability. You know, the sort of things every 90 year-old woman should feel.... wait). I didn't really want to go out and do things, he did. There were other things too, but they aren't relevant here.
That's why I find myself currently single. You might tell me that, 24 is still young, but believe me when I tell you that, in the state of Utah I am an old maid. Social state standards estimate that I have maybe one more year before I should pack it up for good and consider myself undateable/unmarriagable. I should have taken care of this before I was out of high school, what was I thinking, wanting to go to college, that's a man's privilege.
Okay, so it's not really that archaic, but only just barely.
If you are anywhere in a similar situation like me, you've probably looked up online about dating with a chronic illness. You probably also found that their information was terrible and no help! Unfortunately, they are right.
Dating with a chronic illness can be a tricky beast. There are some added worries that can sneak in there. Not only should I be questioning what date I should mention my crazy cat collection on, but I am also having to wonder about when it will be appropriate to mention that, oh yeah, I have this little problem.....
Of course, it is entirely possible that this worry can resolve itself, say, if I happen to sneeze on the date or something. Because for me, sneezing usually makes me bleed and I kind of think that's something my date might notice. I could just say that I have a raging cocaine addiction, but that would open a whole other can of worms. It would also be lying and everyone knows that relationships based on lies never last.
Another thing that a chronically ill person has to consider, depending on if they take medications or not, is when they can go out. I take my pills at night, so I can solve this problem by taking a quick dart into the powder room, that is, if my date drove me. Some medications have stipulations on them that you aren't supposed to drive after taking them, you know, those silly little warnings.
There are also certain activities that I am forced to limit myself too. Long days outside are pretty much out of the question unless I am prepared with sunscreen, an umbrella and better yet, a building to block the suns deadly deadly rays. Fatigue is a big problem too so you have to make sure that you rest up before hand.
It can be hard for the dater, too. You are all expecting fun dates and sometimes this other person just does not want to do anything other than lay about. Sometimes the reaction is to think that this person is lazy, specifically since vasculitis, while debilitating, does not often make a person actually look sick. This is why my illness must be explained, but probably not on the first date. It's a thing that needs to be judged personally. Or maybe tattooed to my forehead, since that would save me a lot of talking.
I decided to attempt dating again, post diagnosis, and that I would decide when to tell whomever it was when it felt right to me. I even went so far as to join one of those dating websites and I got a few hits which were a much needed boost to my self-esteem. One of them even progressed far enough to a date, a coffee date, which I was nervous for. I had so many thoughts in my head: What if we hit it off? When should I tell him about my disease? What if partway through I get sick? Please don't let me eat anything that's going to make me throw-up! What if he wants to go out again? What should I do!?!?!?
None of it mattered, I got stood up. All the anxiety and worry for nothing. Well, nothing except to give me a firmer idea of how I'll handle a future date.
Now, if I were a firm believer in signs, I would have taken the hint, but I am intentionally oblivious to things (note: see the first three posts) so I'm gonna climb back up in that saddle and give it another go!
Friday, July 8, 2011
Politics Leaks in EVERYWHERE
As a person with a newly diagnosed, chronic and currently incurable disease I have had to change some of my perspectives and become more aware of certain issues that previously I probably would not have worried about before. Not many 24 year olds would ever really stop to think about the possibility that they might not be able to work and that they might have to rely on government assistance in order to get by.
Currently, I am still capable of working and I plan on staying that way as long as possible. But the realities of my situation are such that I will more than likely have to go on disability, it's no guarantee, but there is a high possibility that I will not be able to work full time or at all somewhere down the line. Of course, if things in the political arena don't settle down I might have to continue working longer than what my health will allow, either that or become completely dependent upon the kindness of my parents.
From what I have been told by many of my new acquaintances from the Vasculitis Foundation (many of which rely on Social Security and Disability to live) and from what my own snooping about on the intrawebs has found is that, in order to appease the Republican party President Obama put Social Security cuts on the table in order to have a way to bargain for a raise in the debt ceiling.
In all honesty, he probably explains things better than I and *gasp* he's actually in Washington!
If these cuts were to go through, many of these people will lose any way they had to support themselves. For me, this means that if the time comes where I can no longer work due to my Wegner's then I will not have the option of Social Security or Disability to fall back on.
It saddens me that a program that our citizens pay into so that they can have something, even if it is only a little, to rely on in a time of crisis, is one of the only ways that our President has to bargain with the Republicans. This is not the first time that cuts on Social Security have been used as a bargaining tool and it is always being used in cases where the Republicans are unwillling to work with a Democratic president. I hate the fact that these big time politicians use their citizens' lives, yes, cutting this program would be paramount to executing the people that need it, so flippantly.
For once, can these so called leaders in our country look out for the benefit of the ENTIRE country, not just the richest? Can we not all see that we need to raise the debt ceiling? Can we all not see that it is possible to accomplish this by cutting spending in crap programs? Here's an idea, why don't we close some of the tax loopholes that the richest people in this country take advantage of? Why don't we lower the salaries of the big wigs up in Washington? That would help us get rid of some of our deficit. But no. We have to squeeze the little guy, those people that can't do for themselves, those that need the help the most.
Each time that cuts in Social Security are brought up, it is met with great resistance from the public. One way that you can help resist is by writing your congressman, or senator, or representative. You can also sign this petition http://pol.moveon.org/bad_debt_deal/?rc=bad_debt_deal_letter.fb.v2.g1
Maybe we need to do more than that. Maybe we need to use our powers as the people and vote the whole bunch out. Let's get some people in there who actually want to see life in our country get better for everyone. Remember, the government should fear the power of its public, not the other way around.
In other news, the VF is doing a survey to help improve its website http://vf-survey-july-2011.questionpro.com/ once you complete this survey you can enter to win a years membership to the Vasculitis Foundation or a t-shirt, and who doesn't like t-shirts? If you're a person with one of the 15 types of Vasculitis, a family member or friend of a person, or maybe just that really nosy co-worker or neighbor that looks up odd conditions that their cubicle partner or house next-door-er suffers from. You could even be that person who looks up odd diseases on the internet and then decides that they have them. But the point is, if you've been to the site, take 10-15 minutes to help them improve it.
Currently, I am still capable of working and I plan on staying that way as long as possible. But the realities of my situation are such that I will more than likely have to go on disability, it's no guarantee, but there is a high possibility that I will not be able to work full time or at all somewhere down the line. Of course, if things in the political arena don't settle down I might have to continue working longer than what my health will allow, either that or become completely dependent upon the kindness of my parents.
From what I have been told by many of my new acquaintances from the Vasculitis Foundation (many of which rely on Social Security and Disability to live) and from what my own snooping about on the intrawebs has found is that, in order to appease the Republican party President Obama put Social Security cuts on the table in order to have a way to bargain for a raise in the debt ceiling.
In all honesty, he probably explains things better than I and *gasp* he's actually in Washington!
If these cuts were to go through, many of these people will lose any way they had to support themselves. For me, this means that if the time comes where I can no longer work due to my Wegner's then I will not have the option of Social Security or Disability to fall back on.
It saddens me that a program that our citizens pay into so that they can have something, even if it is only a little, to rely on in a time of crisis, is one of the only ways that our President has to bargain with the Republicans. This is not the first time that cuts on Social Security have been used as a bargaining tool and it is always being used in cases where the Republicans are unwillling to work with a Democratic president. I hate the fact that these big time politicians use their citizens' lives, yes, cutting this program would be paramount to executing the people that need it, so flippantly.
For once, can these so called leaders in our country look out for the benefit of the ENTIRE country, not just the richest? Can we not all see that we need to raise the debt ceiling? Can we all not see that it is possible to accomplish this by cutting spending in crap programs? Here's an idea, why don't we close some of the tax loopholes that the richest people in this country take advantage of? Why don't we lower the salaries of the big wigs up in Washington? That would help us get rid of some of our deficit. But no. We have to squeeze the little guy, those people that can't do for themselves, those that need the help the most.
Each time that cuts in Social Security are brought up, it is met with great resistance from the public. One way that you can help resist is by writing your congressman, or senator, or representative. You can also sign this petition http://pol.moveon.org/bad_debt_deal/?rc=bad_debt_deal_letter.fb.v2.g1
Maybe we need to do more than that. Maybe we need to use our powers as the people and vote the whole bunch out. Let's get some people in there who actually want to see life in our country get better for everyone. Remember, the government should fear the power of its public, not the other way around.
In other news, the VF is doing a survey to help improve its website http://vf-survey-july-2011.questionpro.com/ once you complete this survey you can enter to win a years membership to the Vasculitis Foundation or a t-shirt, and who doesn't like t-shirts? If you're a person with one of the 15 types of Vasculitis, a family member or friend of a person, or maybe just that really nosy co-worker or neighbor that looks up odd conditions that their cubicle partner or house next-door-er suffers from. You could even be that person who looks up odd diseases on the internet and then decides that they have them. But the point is, if you've been to the site, take 10-15 minutes to help them improve it.
Monday, July 4, 2011
Side Effects May Include the Following
I might be weird, but I've always been one of those people who read about the drugs they were given by the doctors. To me, it's just common sense. I want to know what I'm going to be doing to myself as I ingest these chemicals.
Reading about (and experiencing) drug side effects has really shown me the truth behind the saying, "Sometimes the cure is worse than the disease".
I already whined about the potential for weight gain that comes from taking Prednisone, but that's just one of the great things that particular drug can do. Osteoporosis seems to be common, it can also cause diabetes, high blood pressure and mood swings.
Anger, rampant horrible anger at small little things swiftly followed by jags of crying that are unconnected to anything going on anywhere. It's almost like someone is playing those sad puppy and kitten commercials with Sarah McLachlin songs on repeat in my head! Now I'm a wibbling mess and there's no real reason for it.
I guess the good news is, when the mood swing comes back around I can be all happy and perky and filled with sugary sweetness. That is, until something pisses me off again. Rage dinosaur activate!
Prednisone also likes to cause night sweats. Which, because I am on Prednisone, frustrate and anger me. I don't like waking up all sweaty, specially when I know that nothing particularly fun has gone on.
All of these emotional roller coasters really exasperate and tire me out. Of course, this same drug has caused me to be a little hyper sensitive to touch. Hugs hurt, kicking water hurts, seriously, it does, I really don't want a massage. On the other hand, I do want a massage because I hurt so much. It's a viscous cycle.
On the plus side, though, this drug helps keep my swelling down. I feel that it does this by taking the swelling from my important parts, such as my organs and moving it to my stomach and face. That's my excuse for looking like the Stay-Puft Girl, what's yours?
I guess I also have to give the Prednisone some props for keeping me going these past almost 7 months as I tried to come off it and found out that the methotrexate I was taking was not doing enough to suppress my immune system. Now I'm on a new chemo which also has a ton of side effects, but I, and you have probably lost focus for now.
I bet you're still all teary from the commercial up there. It's a sad commercial.
Reading about (and experiencing) drug side effects has really shown me the truth behind the saying, "Sometimes the cure is worse than the disease".
I already whined about the potential for weight gain that comes from taking Prednisone, but that's just one of the great things that particular drug can do. Osteoporosis seems to be common, it can also cause diabetes, high blood pressure and mood swings.
Anger, rampant horrible anger at small little things swiftly followed by jags of crying that are unconnected to anything going on anywhere. It's almost like someone is playing those sad puppy and kitten commercials with Sarah McLachlin songs on repeat in my head! Now I'm a wibbling mess and there's no real reason for it.
You watch that video and try not to tear up! And support your local SPCA or ASPCA
I guess the good news is, when the mood swing comes back around I can be all happy and perky and filled with sugary sweetness. That is, until something pisses me off again. Rage dinosaur activate!
Prednisone also likes to cause night sweats. Which, because I am on Prednisone, frustrate and anger me. I don't like waking up all sweaty, specially when I know that nothing particularly fun has gone on.
All of these emotional roller coasters really exasperate and tire me out. Of course, this same drug has caused me to be a little hyper sensitive to touch. Hugs hurt, kicking water hurts, seriously, it does, I really don't want a massage. On the other hand, I do want a massage because I hurt so much. It's a viscous cycle.
On the plus side, though, this drug helps keep my swelling down. I feel that it does this by taking the swelling from my important parts, such as my organs and moving it to my stomach and face. That's my excuse for looking like the Stay-Puft Girl, what's yours?
I guess I also have to give the Prednisone some props for keeping me going these past almost 7 months as I tried to come off it and found out that the methotrexate I was taking was not doing enough to suppress my immune system. Now I'm on a new chemo which also has a ton of side effects, but I, and you have probably lost focus for now.
I bet you're still all teary from the commercial up there. It's a sad commercial.
Sunday, June 26, 2011
Doctors, Specialists, Quacks, ER's and Maybe Even Some New Age Healers!
So, you've just been informed, maybe after countless doctors appointments, maybe after one faithful trip to the ER, that you have this rare disease that can cause life ending damage to your internal organs if you don't keep an eye on it. This is the moment where you decide that maybe that's not a good thing and it's something that you should get on top of as soon as possible. I mean, no one (well, maybe that one person has, cause there always has to be one) has said that end stage organ failure is on the list of things they want to do before they die.
Then, maybe you start thinking, 'Well, I'm not a doctor, how do I know my livers and spleens and kidneys and lungs and harpsichords and whatever else is inside me is being damaged?' Just as a forward note, you won't notice your kidneys going until they have packed their bags and have all but left the building; they don't hurt. You might get a hint if your, pardon, urine is particularly pale or foamy, but that can also be caused by drinking lots of water. Sometimes you'll get visible blood which is a sign that you need to head to the nearest person with needles and a stethoscope, but rest assured, you won't know it's your kidneys doing this to you. It could be a bladder or urinary tract infection. I had one of those recently, in the bladder, lots of blood and more pain than anything I've had with my kidneys (kidneys that the doctor was surprised weren't failing because of how much damage there was).
But, back to the original point. You are not a doctor, so you might need some help in monitoring these things that are inside you and make life so very livable.
Enter the specialists. As a Weggie (I wonder if we should come up with something new to call ourselves, as our disease has had a name change after all) I need help with all the areas that my disease has effected. I've mentioned my ENT before, he only looks at my ears, nose/sinuses and throat. This is what he does. He fixes any scars that come and can give me tips on trying to keep these parts of me healthy.
I also see a pulmonologist. This lovely lady is the one who actually got me into full blown treatment for Wegner's. Really, though, she takes care of my lungs. I get chest x-rays whenever I go in and she is helping me to prune the little tree growing in my airbags. She helps me keep my breathing in check with all her fancy inhalers and oxygen monitors and tips about keeping allergens down and preventing an asthma attack or working through one if I'm stuck without my inhaler. Mostly she just impresses upon me that I need to keep the inhaler on you I swear...
Of course, I also see a rheumatologist. Now, this one can be a little tricky. You can't just go see any rheumatologist, but you have to see one that specializes in vasculitis. Many of them don't. But you need to have one.You are more likely to find these special breeds of doctors near big medical and research centers such as John Hopkins or the Mayo Clinic. I lucked out, again, in that mine are relatively close to my house, are very knowledgeable and I didn't have to search for them. They are connected to Intermountain Medical, but are not entirely dependent on them so my insurance will cover me going there.
Many other people with Wegner's see a renal specialist so that their kidneys can be monitored. I do not, mostly because my rheumatologist shares his office with a kidney specialist so they can consult right there. Lucky me again, I have one stop shopping in this area.
You'll also probably need a GP. I must stress though that you need a good GP. One that doesn't mind taking a backseat to the specialists. I am currently struggling in this area. My GP that I've had for many, many moons, from back when I was only so high has trouble dealing with my condition. I have gone to him before, experiencing sinus activity (this was post diagnosis which he was aware of) I mentioned that since I started treatment for my Wegner's I have had MRSA before (for those that don't know, MRSA is an anti-biotic resistant staff infection that can turn into flesh eating bacteria if left unchecked) and I thought that this was the same thing. It looked and felt the same and is a known risk for people on immunosuppressant drugs specially those that work in a high risk area (I have mentioned before that I work with pre-kindergarten kids, right?). He didn't even check me for it, just blew off my concerns, gave me an antibiotic that didn't work and when I went in to see the ENT two weeks later was diagnosed with MRSA... again. Currently, I am looking for a new GP, possibly one that is an internist.
Don't be afraid to try out some new agey things either. I have heard some vasculitis patients describe acupuncture as something that helps them a lot. I haven't tried it, yet, you need funds for things like that. Massages can work wonders (also something I can't afford to do), yoga and meditation help a lot as well. Part of vasculitis is triggered by stress, so anything you can do to keep stress free will probably help. Some supplements will be good too, just don't go for things that are supposed to boost your immune system. As my rheumatologist told me, your immune system is the problem, the treatments are supposed to suppress it, what would be the point of doing something to boost it?
Granted, I am no doctor. I am only a patient. A fairly new patient at that. If your doctors have told you something different certainly listen to them over me!
Then, maybe you start thinking, 'Well, I'm not a doctor, how do I know my livers and spleens and kidneys and lungs and harpsichords and whatever else is inside me is being damaged?' Just as a forward note, you won't notice your kidneys going until they have packed their bags and have all but left the building; they don't hurt. You might get a hint if your, pardon, urine is particularly pale or foamy, but that can also be caused by drinking lots of water. Sometimes you'll get visible blood which is a sign that you need to head to the nearest person with needles and a stethoscope, but rest assured, you won't know it's your kidneys doing this to you. It could be a bladder or urinary tract infection. I had one of those recently, in the bladder, lots of blood and more pain than anything I've had with my kidneys (kidneys that the doctor was surprised weren't failing because of how much damage there was).
But, back to the original point. You are not a doctor, so you might need some help in monitoring these things that are inside you and make life so very livable.
Enter the specialists. As a Weggie (I wonder if we should come up with something new to call ourselves, as our disease has had a name change after all) I need help with all the areas that my disease has effected. I've mentioned my ENT before, he only looks at my ears, nose/sinuses and throat. This is what he does. He fixes any scars that come and can give me tips on trying to keep these parts of me healthy.
I also see a pulmonologist. This lovely lady is the one who actually got me into full blown treatment for Wegner's. Really, though, she takes care of my lungs. I get chest x-rays whenever I go in and she is helping me to prune the little tree growing in my airbags. She helps me keep my breathing in check with all her fancy inhalers and oxygen monitors and tips about keeping allergens down and preventing an asthma attack or working through one if I'm stuck without my inhaler. Mostly she just impresses upon me that I need to keep the inhaler on you I swear...
Of course, I also see a rheumatologist. Now, this one can be a little tricky. You can't just go see any rheumatologist, but you have to see one that specializes in vasculitis. Many of them don't. But you need to have one.You are more likely to find these special breeds of doctors near big medical and research centers such as John Hopkins or the Mayo Clinic. I lucked out, again, in that mine are relatively close to my house, are very knowledgeable and I didn't have to search for them. They are connected to Intermountain Medical, but are not entirely dependent on them so my insurance will cover me going there.
Many other people with Wegner's see a renal specialist so that their kidneys can be monitored. I do not, mostly because my rheumatologist shares his office with a kidney specialist so they can consult right there. Lucky me again, I have one stop shopping in this area.
You'll also probably need a GP. I must stress though that you need a good GP. One that doesn't mind taking a backseat to the specialists. I am currently struggling in this area. My GP that I've had for many, many moons, from back when I was only so high has trouble dealing with my condition. I have gone to him before, experiencing sinus activity (this was post diagnosis which he was aware of) I mentioned that since I started treatment for my Wegner's I have had MRSA before (for those that don't know, MRSA is an anti-biotic resistant staff infection that can turn into flesh eating bacteria if left unchecked) and I thought that this was the same thing. It looked and felt the same and is a known risk for people on immunosuppressant drugs specially those that work in a high risk area (I have mentioned before that I work with pre-kindergarten kids, right?). He didn't even check me for it, just blew off my concerns, gave me an antibiotic that didn't work and when I went in to see the ENT two weeks later was diagnosed with MRSA... again. Currently, I am looking for a new GP, possibly one that is an internist.
Don't be afraid to try out some new agey things either. I have heard some vasculitis patients describe acupuncture as something that helps them a lot. I haven't tried it, yet, you need funds for things like that. Massages can work wonders (also something I can't afford to do), yoga and meditation help a lot as well. Part of vasculitis is triggered by stress, so anything you can do to keep stress free will probably help. Some supplements will be good too, just don't go for things that are supposed to boost your immune system. As my rheumatologist told me, your immune system is the problem, the treatments are supposed to suppress it, what would be the point of doing something to boost it?
Granted, I am no doctor. I am only a patient. A fairly new patient at that. If your doctors have told you something different certainly listen to them over me!
Friday, June 24, 2011
Creating Hope Act
Just as an aside, I wouldn't have even known about the Creating Hope Act if it weren't for someone posting about it on the Wegener's forums I watch. A big thanks to the original poster! I hope I did a decent job summarizing the article.
The Orphan Drug Act was signed into law by President Ronald Reagan on January 4, 1983. This original law completed its purpose of helping R & D which in turn helped create treatments whose only focus was on rare diseases, but much more needs to be done. In the United States alone over 25 million Americans suffer from one of the 7,000 + "orphan diseases". An orphan disease is a disease that has not been a focus of pharmaceutical companies because there is a lack of financial pressure to do so. In other words, the pharmaceutical companies would not receive as much profit from these research into these diseases because of their rarity or they are diseases more prevalent in developing nations. This makes it very hard for a person with a rare disease to get a diagnosis, let alone treatment. When you consider that many of these diseases, when they are active, can cause death or cripple a person in a matter of months and it takes YEARS for some of them to get diagnosed (I was lucky in that it only took me about a year to get a firm diagnosis, for many people with Wegner's they can go decades if they don't have a fatal flair before someone figures out what is going on.) something certainly needs to be done. The Orphan Drug Act offered these companies tax incentives for for doing clinical trials and 7 years of exclusive marketing. More than 25 years later, only 2,400 drugs have been given the orphan designation and out of those only about 370 have actually been approved for use by the FDA. Recently, though, new laws are being proposed by NIH (the National Institute of Health which is also trying to bring about an Undiagnosed Disease Program) and the FDA that would help unite patient advocates, researchers and companies that want to develop new therapies. One such law is the Creating Hope Act, Senate Bill 606, which would enable drug developers to receive a "priority review voucher" which a company could sell or transfer multiple times if they submit an orphan drug for review. One problem here is the only action that has taken place on this bill sponsored by three democrats and two republicans was on May 31, 2011 where the bill was sent on for review to the Committee on Health, Education, Labor, and Pensions. No one is sure about where prospects for this bill currently stand due to lack of support. This is not the only bill that is hoping to improve the futures for people with rare diseases and there has been some connections made with European counterparts to the FDA and patient advocacy groups in the hopes that we can begin to trade information and decrease some of the processes that are duplicated between each country when it comes to bringing drugs to the market (look how long Rituximab/Rituxan has been available for treatment of vasculitis in Europe verses it only being approved for us in the United States a few weeks ago).
The Creating Hope Act and the re-establishment of the Congressional Rare Disease Caucus shows a lot more activity from advocates groups, but they can only go so far. It is up to the patients with rare diseases, their families and friends to write to their representatives asking them to join the coalition in support of these bills. Finding your representative can be done through this link: http://whoismyrepresentative.com/
Further Readings:
Tuesday, June 21, 2011
It's Never Allergies
I mentioned yesterday that, to my ENT I spoke my standard answer for runny/stuffy noses. It's allergies.
Well, I should know by now that it's never allergies, it's never been allergies and I hope that one day it will actually be allergies.
If you can't guess, my rheumy, whom I saw today went... sorry, you are not having allergies. Your nose was swollen, your hand was and still is swollen, headaches, roaming body fevers. How much Prednisone are you taking?
Turns out that, as I lowered my dose of Prednisone, the methotrexate was not strong enough to take over. So now they are putting me on a stronger chemo, that is if my blood test comes back positive for the enzyme needed to take this chemo.
Yes, a diagnosis with most types of vasculitis come with a crash course, first hand learning experience in various forms of chemo. Each type of vasculitis have different symptoms, and each person reacts to their type of vasculitis different than someone else with the same type. To simplify, I have Wegner's, a type of vasculitis with certain major areas that it hits but it can also include other areas (this is why it is one form of systemic vasculitis), another Weggie (person with Wegner's) can have different organ involvement and can respond differently to the same type of chemo that I am on. Some people also have one flare up their entire life, one round of chemo and their done, other people have a roller coaster of flair ups and remission and are on and off chemo for the rest of their lives, still other people will never have a strong flair up, but never have it completely go away either.
Treating these diseases seem to be very hit or miss. Sometimes the treatments just don't seem to have any follow through!
So, mine seemed to be responding to the methotrexate, but now it's not. My two options are Immuran, and if I don't have the enzyme (if you take it without the enzyme you end up in the hospital which is all sorts of no good) or something else that I would have to get through IV (my rheumy didn't say what this one was). This also means that I don't get to move on to only seeing the rheumy every other month. I have to come back even sooner!
No, it wasn't allergies. Yes, I still have hope that one day it will be!
Well, I should know by now that it's never allergies, it's never been allergies and I hope that one day it will actually be allergies.
If you can't guess, my rheumy, whom I saw today went... sorry, you are not having allergies. Your nose was swollen, your hand was and still is swollen, headaches, roaming body fevers. How much Prednisone are you taking?
Turns out that, as I lowered my dose of Prednisone, the methotrexate was not strong enough to take over. So now they are putting me on a stronger chemo, that is if my blood test comes back positive for the enzyme needed to take this chemo.
Yes, a diagnosis with most types of vasculitis come with a crash course, first hand learning experience in various forms of chemo. Each type of vasculitis have different symptoms, and each person reacts to their type of vasculitis different than someone else with the same type. To simplify, I have Wegner's, a type of vasculitis with certain major areas that it hits but it can also include other areas (this is why it is one form of systemic vasculitis), another Weggie (person with Wegner's) can have different organ involvement and can respond differently to the same type of chemo that I am on. Some people also have one flare up their entire life, one round of chemo and their done, other people have a roller coaster of flair ups and remission and are on and off chemo for the rest of their lives, still other people will never have a strong flair up, but never have it completely go away either.
Treating these diseases seem to be very hit or miss. Sometimes the treatments just don't seem to have any follow through!
So, mine seemed to be responding to the methotrexate, but now it's not. My two options are Immuran, and if I don't have the enzyme (if you take it without the enzyme you end up in the hospital which is all sorts of no good) or something else that I would have to get through IV (my rheumy didn't say what this one was). This also means that I don't get to move on to only seeing the rheumy every other month. I have to come back even sooner!
No, it wasn't allergies. Yes, I still have hope that one day it will be!
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