Somehow, my fourth year anniversary of having been diagnosed has come and gone and I didn't even notice until after the fact. Is that what they mean by "the new normal"?
I'm meant to be getting Rituxan soon. I started it while I was on my blog hiatus so I don't remember if I've mentioned having to go on it before. It works wonders! Really! For a short time I was able to stop taking the evil that is prednisone for a few months until I started having disease activity in my eyes. Since then I've been on a low dose and we're hoping that if I get on a more regular schedule of it I will be able to stay off the prednisone.
If you haven't struggled with that drug before you don't know how much that thought excites me!
Showing posts with label Wegener's Granulomatosis. Show all posts
Showing posts with label Wegener's Granulomatosis. Show all posts
Thursday, January 15, 2015
Thursday, December 18, 2014
Throw Back Thursday?
I know I've been really sporadic with updating this blog as of late and I really would like to start up again.
This is a TBT post, I guess. Back when I first got put on Rituxan in December of 2012 (and subsequently had a pulmonary embolism on Christmas and spent that day, and my last infusion day, in the hospital....) I decided to write a bunch of "Chemo Carols" to occupy the long hours spent in the infusion chair.
It was a long, boring, and more than a little drugged experience. I thought that posting them here on my dusty blog for a TBT would be appropriate since I am getting scheduled for it again after the first of the year.
In the first hour of rituxan my oncology nurse gave to me, a full bag on the IV tree.
In the second hour of rituxan my oncology nurse gave to me, two vitals checks.
In the third hour of rituxan my oncology nurse gave to me, three pillows for my back.
In the fourth hour of rituxan my oncology nurse gave to me, four sterile pads.
In the fifth hour of rituxan my oncology nurse gave to me, five medicines.
In the sixth hour of rituxan my oncology nurse brought to me, six new chemo patients.
In the seventh hour of rituxan my oncology nurse gave to me, seven machines beeping.
In the eighth hour of rituxan my oncology nurse gave to me, eight bruises forming.
In the ninth hour of rituxan my oncology nurse gave to me, nine disinfectant wipes.
In the tenth hour of rituxan my HMO told to me, I’ve got to pay a ten thousand dollar fee.
In the eleventh hour of rituxan the song has gotten long, eleven times I’ve wished that I was home.
In the twelfth hour of rituxan I’m finally going home, for another week I get a reprieve!
Oh the room is so cold and sterile, but the rituxan in the bag does babble ,
And since the IV’s got hours to go, let it flow, let it flow, let it flow.
I don’t show signs of reacting, my lungs are not hacking,
And since the IV’s got hours to go, let it flow, let it flow, let it flow.
When I finally get to leave, how I’ll skip down the hall to the door,
But the rituxan will help me heal, so my health won’t be so poor.
The IV is slowly stopping, and my vein has started popping,
But as long as we take it slow, the Rituxan flows, the rituxan flows, the rituxan flows.
I posted these on my tumblr account when I first wrote them, so if you've seen them there that's because it was me that did it.
Now you know!
I hope you are all having a pleasant season! I've got some exciting news that's coming after the first of the year so stay tuned!
This is a TBT post, I guess. Back when I first got put on Rituxan in December of 2012 (and subsequently had a pulmonary embolism on Christmas and spent that day, and my last infusion day, in the hospital....) I decided to write a bunch of "Chemo Carols" to occupy the long hours spent in the infusion chair.
It was a long, boring, and more than a little drugged experience. I thought that posting them here on my dusty blog for a TBT would be appropriate since I am getting scheduled for it again after the first of the year.
In the first hour of rituxan my oncology nurse gave to me, a full bag on the IV tree.
In the second hour of rituxan my oncology nurse gave to me, two vitals checks.
In the third hour of rituxan my oncology nurse gave to me, three pillows for my back.
In the fourth hour of rituxan my oncology nurse gave to me, four sterile pads.
In the fifth hour of rituxan my oncology nurse gave to me, five medicines.
In the sixth hour of rituxan my oncology nurse brought to me, six new chemo patients.
In the seventh hour of rituxan my oncology nurse gave to me, seven machines beeping.
In the eighth hour of rituxan my oncology nurse gave to me, eight bruises forming.
In the ninth hour of rituxan my oncology nurse gave to me, nine disinfectant wipes.
In the tenth hour of rituxan my HMO told to me, I’ve got to pay a ten thousand dollar fee.
In the eleventh hour of rituxan the song has gotten long, eleven times I’ve wished that I was home.
In the twelfth hour of rituxan I’m finally going home, for another week I get a reprieve!
Rituxan infusion number 2
More chemo carols brought to you by Rituxan and Benadryl :)Oh the room is so cold and sterile, but the rituxan in the bag does babble ,
And since the IV’s got hours to go, let it flow, let it flow, let it flow.
I don’t show signs of reacting, my lungs are not hacking,
And since the IV’s got hours to go, let it flow, let it flow, let it flow.
When I finally get to leave, how I’ll skip down the hall to the door,
But the rituxan will help me heal, so my health won’t be so poor.
The IV is slowly stopping, and my vein has started popping,
But as long as we take it slow, the Rituxan flows, the rituxan flows, the rituxan flows.
I posted these on my tumblr account when I first wrote them, so if you've seen them there that's because it was me that did it.
Now you know!
I hope you are all having a pleasant season! I've got some exciting news that's coming after the first of the year so stay tuned!
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.
Sunday, May 27, 2012
A Letter
Dear Mitt Romney,
In your quest to obtain the presidential election bid this year you have said some things that have made people feel you are out of touch with the everyday struggles of all but a small number of upper class citizens. I have largely agreed with these criticisms, but it wasn't until I thought about one specific thing you said that I really stood up and took offense.
You said something to the effect of 'if you need money you should go ask your parents for help'
Now, I'm sure you can spin this however you want, and that you intended it to mean money to help start a business, but when I applied the basic principle of asking my parents for money for help to my own situation I realized you have pretty much told me that my life is not valuable enough for my government to help keep me from dying.
You see, while I was busy working to pay my way though college, or at least to pay for what wasn't covered by a near full ride scholarship and student loans, working away to better myself and open avenues for a good future where I could be a success I was dying. I don't mean in the spiritual. starving my soul kind of dying because I was working towards a goal where I would be helping others for a living and that's where I feel success lies. No, I was fighting a war against myself, my own immune system was and still is waging an attack on every blood vessel in my body, from the large arteries to the small capillaries.
This is something you should be able to sympathize with as I understand your wife also suffers from an autoimmune disorder.
Completely unaware of what was going on inside me, I graduated college and began work teaching under privileged kids at a Title I public school.
Within a few months of working I was near dead.
I had attributed my symptoms first, to being at college, and environment where many people are not able to go to the doctors and germs are spread readily. Then I convinced myself that I was sick because I was teaching young children. By December my lungs were hemorrhaging, I could hardly walk, and the only reason my kidneys were not considered to be in failure was because the waste being dumped into my system had not yet appeared in my blood work, which came as a shock to my doctors.
This is how, at the age of 24, I was diagnosed with the rare disease Granulomatosis with Polyangiits formerly know as Wegener's Granulomatosis. A relative of Lupus, MS, asthma, Chrones Disease, and a mirade of other autoimmune disorders.
I managed to finish out the school year taking highly toxic medications everyday, but was, regrettably, not healthy enough to return after summer break. I was lucky in that I had been living with my parents while I saved money to find my own place and they continued to allow me to live under their roof while I spent all of my savings on monthly doctors visits, prescriptions, ER visits, and surgeries.
This was all while I was still on my parents' insurance.
Here is where I get to my reasoning that you have told me I should resign myself to die.
I will run out of insurance in the next few months. I was very lucky that President Obama's health care reform at least was able to let me stay insured until I was 26 years old. You know, the health care reform that was based on the model you created for Massachusetts; the one that would have given me a low cost government insurance option that I could afford had you not helped to block it?
At 26, in November, actually, the same month I will not be voting for you, I will become uninsured on top of being unemployed. I have tried Social Security but, funny thing, they say I am too young and too highly educated to be disabled so I have to wait another 12-16 months so that I may plead my case in front of a judge.
Until then, I get to figure out how to come up with $11,000 a year to pay for my life. This figure is only an estimate and does not include any surgeries, ER visits, antibiotics, hospital stays, x-rays, scans, and labwork that often tag every year for someone who is immunocompromised, is taking highly toxic medications daily, and has a mirade of other complications stemming from such.
My parents are currently helping me, they cannot afford to help me cover this sum, either. Unless you are willing to chip in and help Mr. Romney by coming up with better programs or become willing to put your money where your mouth is, I am stuck between a rock and a wall of knives. Left untreated, my disease has a life expectancy of five months or less once symptoms start showing. In this case, death is a painful process of going through multiple organ failures at the same time.
This is a reality that many, many citizens of the United States are facing right now.
Your thoughtless words lead me to believe that you are not just ignorant of the struggles faced by most Americans, you are dangerously out of touch. I need a leader who realizes very few people have the luxury of turning to a vast family fortune when money is needed. I need a leader who knows that, for most of us, one paycheck is standing between having a home and being put out on the street. One missed paycheck is all it would take to destroy a family and send people to their graves.
You are not that leader.
My life is not a privilege, it is a right and who are you to determine my worthiness based upon my family fortunes?
In your quest to obtain the presidential election bid this year you have said some things that have made people feel you are out of touch with the everyday struggles of all but a small number of upper class citizens. I have largely agreed with these criticisms, but it wasn't until I thought about one specific thing you said that I really stood up and took offense.
You said something to the effect of 'if you need money you should go ask your parents for help'
Now, I'm sure you can spin this however you want, and that you intended it to mean money to help start a business, but when I applied the basic principle of asking my parents for money for help to my own situation I realized you have pretty much told me that my life is not valuable enough for my government to help keep me from dying.
You see, while I was busy working to pay my way though college, or at least to pay for what wasn't covered by a near full ride scholarship and student loans, working away to better myself and open avenues for a good future where I could be a success I was dying. I don't mean in the spiritual. starving my soul kind of dying because I was working towards a goal where I would be helping others for a living and that's where I feel success lies. No, I was fighting a war against myself, my own immune system was and still is waging an attack on every blood vessel in my body, from the large arteries to the small capillaries.
This is something you should be able to sympathize with as I understand your wife also suffers from an autoimmune disorder.
Completely unaware of what was going on inside me, I graduated college and began work teaching under privileged kids at a Title I public school.
Within a few months of working I was near dead.
I had attributed my symptoms first, to being at college, and environment where many people are not able to go to the doctors and germs are spread readily. Then I convinced myself that I was sick because I was teaching young children. By December my lungs were hemorrhaging, I could hardly walk, and the only reason my kidneys were not considered to be in failure was because the waste being dumped into my system had not yet appeared in my blood work, which came as a shock to my doctors.
This is how, at the age of 24, I was diagnosed with the rare disease Granulomatosis with Polyangiits formerly know as Wegener's Granulomatosis. A relative of Lupus, MS, asthma, Chrones Disease, and a mirade of other autoimmune disorders.
I managed to finish out the school year taking highly toxic medications everyday, but was, regrettably, not healthy enough to return after summer break. I was lucky in that I had been living with my parents while I saved money to find my own place and they continued to allow me to live under their roof while I spent all of my savings on monthly doctors visits, prescriptions, ER visits, and surgeries.
This was all while I was still on my parents' insurance.
Here is where I get to my reasoning that you have told me I should resign myself to die.
I will run out of insurance in the next few months. I was very lucky that President Obama's health care reform at least was able to let me stay insured until I was 26 years old. You know, the health care reform that was based on the model you created for Massachusetts; the one that would have given me a low cost government insurance option that I could afford had you not helped to block it?
At 26, in November, actually, the same month I will not be voting for you, I will become uninsured on top of being unemployed. I have tried Social Security but, funny thing, they say I am too young and too highly educated to be disabled so I have to wait another 12-16 months so that I may plead my case in front of a judge.
Until then, I get to figure out how to come up with $11,000 a year to pay for my life. This figure is only an estimate and does not include any surgeries, ER visits, antibiotics, hospital stays, x-rays, scans, and labwork that often tag every year for someone who is immunocompromised, is taking highly toxic medications daily, and has a mirade of other complications stemming from such.
My parents are currently helping me, they cannot afford to help me cover this sum, either. Unless you are willing to chip in and help Mr. Romney by coming up with better programs or become willing to put your money where your mouth is, I am stuck between a rock and a wall of knives. Left untreated, my disease has a life expectancy of five months or less once symptoms start showing. In this case, death is a painful process of going through multiple organ failures at the same time.
This is a reality that many, many citizens of the United States are facing right now.
Your thoughtless words lead me to believe that you are not just ignorant of the struggles faced by most Americans, you are dangerously out of touch. I need a leader who realizes very few people have the luxury of turning to a vast family fortune when money is needed. I need a leader who knows that, for most of us, one paycheck is standing between having a home and being put out on the street. One missed paycheck is all it would take to destroy a family and send people to their graves.
You are not that leader.
My life is not a privilege, it is a right and who are you to determine my worthiness based upon my family fortunes?
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.
Monday, April 23, 2012
Sneaky Sneaky
Alright, I can't remember if I mentioned it in the last couple of posts, but I was doing really well. So well, the doctors figured I could be let and only have to come in every other month instead of every month. But Wegener's is a tricksy sort of beast.
When no one is watching it, it has this nasty habit of jumping out of the shadows to bite your unsuspecting rump.
I kept telling myself that it was just allergies and yadda yadda blah blah blah, but it's not. It's a flair. I get to jump from 2.5 mg of Prednisone back up to 20 mg. DE-PRESS-ING.
It was funny too, I was talking to my rheumy and one of the symptoms I'd had was strange hives, I'd get actual welts that would burn and itch and then vanish. My rhuemy was like, "huh, that's not normally something you see with Wegener's, but Lupus... You're not allowed to have anything else though." The next day I had a mark on my forehead, it looked like someone had actually bitten my forehead. This red mark was there for a while but then went away too.
Don't worry, I'm not thinking I have lupus too. I think it's just a weird little vasculitis thing. Wegener's can go after the skin and all. Of course, I can go around telling people I have lupus in my hand. Hand lupus!
Needless to say, I am now back on my monthly rheumy visit. It was good for one month off, I guess.
When no one is watching it, it has this nasty habit of jumping out of the shadows to bite your unsuspecting rump.
I kept telling myself that it was just allergies and yadda yadda blah blah blah, but it's not. It's a flair. I get to jump from 2.5 mg of Prednisone back up to 20 mg. DE-PRESS-ING.
It was funny too, I was talking to my rheumy and one of the symptoms I'd had was strange hives, I'd get actual welts that would burn and itch and then vanish. My rhuemy was like, "huh, that's not normally something you see with Wegener's, but Lupus... You're not allowed to have anything else though." The next day I had a mark on my forehead, it looked like someone had actually bitten my forehead. This red mark was there for a while but then went away too.
Don't worry, I'm not thinking I have lupus too. I think it's just a weird little vasculitis thing. Wegener's can go after the skin and all. Of course, I can go around telling people I have lupus in my hand. Hand lupus!
Needless to say, I am now back on my monthly rheumy visit. It was good for one month off, I guess.
Thursday, April 5, 2012
More About Social Security
I'm not exactly sure if I should be posting about this, but I think it might help some people out there.
There are things that social security doesn't seem to understand about vasculitis. They don't seem to get that symptoms can flair up at any time, they don't seem to understand that vasculitis (this is all types included) have a mortality rate of up to 98% within two years, and they don't seem to understand that stress and illness increase the risk of symptoms reoccurring.
When a person is attempting to apply for social security in the US they have to list every medication that they take for their condition and why they take it. A while back my rheumatologist and I decided that, in order to deal with the mood changes and depression I had been having in reaction to my situation and the medications I am currently on, I would begin taking some anti-depressants.
This meant that when I applied for SS I had to put down that I am taking this new medication and that I am taking it for depression. I began taking this medication just before I got my first denial so I just added it to the list when I appealed.
It took them a couple of months to decide that if I was on an antidepressant why wasn't I seeing a psychologist for my depression? I must go see one. They paid for the appointment, and the psychologist explained to me that he was just going to do an interview and write a report for SS. What he says doesn't determine my approval or not, but that it helps SS weigh my options.
By this time, the medication was working, I already knew why I was depressed in the first place, and I was on my way to turning things around. I explained all this to the psychologist and we went on with the interview. I was a little concerned because I had lately been having some memory lapses that were bothering me, but the psychologist assured me that this was normal. Well, it's not normal for me. Something that he wouldn't know because he doesn't really know me.
This was my biggest problem with the interview. Sorry, but I don't think that a psychologist really has the ability to accurately determine the mental state of a person with just one interview. Maybe he thinks memory lapses in a 25 year old is normal, but it is not normal for me. I've never been the type to walk into a room and have no idea why, I've never had problems before with remembering words, or what I was talking about. Sometimes I've even forgotten who I was talking to while I was talking to a person. This isn't normal for me.
If SS is really concerned about deciding if a person does need a certain medication maybe they should try to get more than one appointment. My rheumatologist has seen me every month for over a year. She knows me. She knows what I want to do with my life, she knows how very not forthcoming I usually am about my problems, she has seen me in various moods. Bottom line, I trust her judgement on my mental state more so than a psychologist who only did a 15 minute interview.
Maybe it would be better for SS to do more than just take medical records. Maybe they should ask for statements from the physicians that work with the patient so that they can actually see why the decision to try for SS was made. They need to get a more complete image of the person.
Specifically when it comes to people with a disease such as vaculitis where symptoms come and go, medical professionals have no idea how to diagnose or treat, and there are no specialists that really deal with vasculitis. Many times patients with vasculitis are seen as malingering because they will put down on paper how they are feeling, but their bloodwork does not match up with what was said or when a face to face interview is done they don't seem "that sick".
I think what I'm really trying to get at in this post is that, we need to change the way that medicine and government treats patients with hard to diagnose diseases. The diseases that are considered "mysterious".
In my case I do not want to spend my life on SS, I have the drive to get back into work and goals that I want to achieve. Unfortunately, right now my doctors and I have decided that it is not the best idea for me to be back in the work force right now. Until I do go back, I do need some way to support myself. Medical bills have burned through the savings I made while I was working and at the end of the year I will be uninsured. With one visit to my rheumatologist costing me over $350 not including any tests they do I am not going to be able to afford any further health care.
There are things that social security doesn't seem to understand about vasculitis. They don't seem to get that symptoms can flair up at any time, they don't seem to understand that vasculitis (this is all types included) have a mortality rate of up to 98% within two years, and they don't seem to understand that stress and illness increase the risk of symptoms reoccurring.
When a person is attempting to apply for social security in the US they have to list every medication that they take for their condition and why they take it. A while back my rheumatologist and I decided that, in order to deal with the mood changes and depression I had been having in reaction to my situation and the medications I am currently on, I would begin taking some anti-depressants.
This meant that when I applied for SS I had to put down that I am taking this new medication and that I am taking it for depression. I began taking this medication just before I got my first denial so I just added it to the list when I appealed.
It took them a couple of months to decide that if I was on an antidepressant why wasn't I seeing a psychologist for my depression? I must go see one. They paid for the appointment, and the psychologist explained to me that he was just going to do an interview and write a report for SS. What he says doesn't determine my approval or not, but that it helps SS weigh my options.
By this time, the medication was working, I already knew why I was depressed in the first place, and I was on my way to turning things around. I explained all this to the psychologist and we went on with the interview. I was a little concerned because I had lately been having some memory lapses that were bothering me, but the psychologist assured me that this was normal. Well, it's not normal for me. Something that he wouldn't know because he doesn't really know me.
This was my biggest problem with the interview. Sorry, but I don't think that a psychologist really has the ability to accurately determine the mental state of a person with just one interview. Maybe he thinks memory lapses in a 25 year old is normal, but it is not normal for me. I've never been the type to walk into a room and have no idea why, I've never had problems before with remembering words, or what I was talking about. Sometimes I've even forgotten who I was talking to while I was talking to a person. This isn't normal for me.
If SS is really concerned about deciding if a person does need a certain medication maybe they should try to get more than one appointment. My rheumatologist has seen me every month for over a year. She knows me. She knows what I want to do with my life, she knows how very not forthcoming I usually am about my problems, she has seen me in various moods. Bottom line, I trust her judgement on my mental state more so than a psychologist who only did a 15 minute interview.
Maybe it would be better for SS to do more than just take medical records. Maybe they should ask for statements from the physicians that work with the patient so that they can actually see why the decision to try for SS was made. They need to get a more complete image of the person.
Specifically when it comes to people with a disease such as vaculitis where symptoms come and go, medical professionals have no idea how to diagnose or treat, and there are no specialists that really deal with vasculitis. Many times patients with vasculitis are seen as malingering because they will put down on paper how they are feeling, but their bloodwork does not match up with what was said or when a face to face interview is done they don't seem "that sick".
I think what I'm really trying to get at in this post is that, we need to change the way that medicine and government treats patients with hard to diagnose diseases. The diseases that are considered "mysterious".
In my case I do not want to spend my life on SS, I have the drive to get back into work and goals that I want to achieve. Unfortunately, right now my doctors and I have decided that it is not the best idea for me to be back in the work force right now. Until I do go back, I do need some way to support myself. Medical bills have burned through the savings I made while I was working and at the end of the year I will be uninsured. With one visit to my rheumatologist costing me over $350 not including any tests they do I am not going to be able to afford any further health care.
Sunday, January 29, 2012
Cleaning up the dictionary
There are a few words in Vasculitis vocabulary that need to be removed completely or to have their definitions solidified within the community so that everyone knows what everyone else is talking about. Patients need to be able to understand what a doctor means when they say a certain thing and doctors need to decide what language they are going to use when it comes to describing aspects of these diseases to each other.
One of the first ones that needs to go completely and as far as I know is Wegener's Specific is the term limited. When a doctor tells a patient that they have limited Wegener's it usually means that they have no kidney involvement. The problem here is that a lot of doctors also seem to feel that, if there is no kidney involvement, then the disease is not serious or not as life threatening as a disease path that does effect the kidneys. This is in no way true. It is possible to live with kidney damage through dialysis and as far as I am aware, a kidney transplant is a lot easier than, say, a lung transplant.
Just because the disease is not active in the kidneys does not mean it is not life threatening. Someone on the Vasculitis Boards put it this way, "We don't tell someone that they have limited cancer just because it hasn't spread to anywhere other than the breast, or the colon, or the skin." Limited should not ever be used.
Another term that needs to be determined as to what exactly it means is remission. It appears that each doctor has a different idea about when a person goes into "remission". Other doctors, and these are the ones that I tend to agree with, don't even use the term remission because it gives off the idea that the patient is somehow cured of this disease. I have a personal example of this. My grandmother has a hard time understanding that what I have will never really go away. It will always be there. For the longest time she would ask me why I didn't just go to the hospital and get some strong antibiotics, even if I had to stay there for a while. Finally, I got her to understand that being in the hospital was not what I needed. Now that I am getting back good blood work finally she now feels that I have been cured and am "in remission".
I prefer instead to use the term quiet. This conveys the idea that the disease is not active at this time, but leaves open the very likely possibility that it will become active again.
Along these same lines, doctors need to decide what the difference between a flare-up and a relapse are. Some people have said that their doctors say a flare-up is when there is minor disease activity while a relapse is severe. Others use the two terms interchangeably.
It is hard enough trying to find doctors to treat vaculitis, but then if you happen to go to more than one doctor and they each use different terminology then the patient can become confused about how their illness is responding and how they are physically doing.
One of the first ones that needs to go completely and as far as I know is Wegener's Specific is the term limited. When a doctor tells a patient that they have limited Wegener's it usually means that they have no kidney involvement. The problem here is that a lot of doctors also seem to feel that, if there is no kidney involvement, then the disease is not serious or not as life threatening as a disease path that does effect the kidneys. This is in no way true. It is possible to live with kidney damage through dialysis and as far as I am aware, a kidney transplant is a lot easier than, say, a lung transplant.
Just because the disease is not active in the kidneys does not mean it is not life threatening. Someone on the Vasculitis Boards put it this way, "We don't tell someone that they have limited cancer just because it hasn't spread to anywhere other than the breast, or the colon, or the skin." Limited should not ever be used.
Another term that needs to be determined as to what exactly it means is remission. It appears that each doctor has a different idea about when a person goes into "remission". Other doctors, and these are the ones that I tend to agree with, don't even use the term remission because it gives off the idea that the patient is somehow cured of this disease. I have a personal example of this. My grandmother has a hard time understanding that what I have will never really go away. It will always be there. For the longest time she would ask me why I didn't just go to the hospital and get some strong antibiotics, even if I had to stay there for a while. Finally, I got her to understand that being in the hospital was not what I needed. Now that I am getting back good blood work finally she now feels that I have been cured and am "in remission".
I prefer instead to use the term quiet. This conveys the idea that the disease is not active at this time, but leaves open the very likely possibility that it will become active again.
Along these same lines, doctors need to decide what the difference between a flare-up and a relapse are. Some people have said that their doctors say a flare-up is when there is minor disease activity while a relapse is severe. Others use the two terms interchangeably.
It is hard enough trying to find doctors to treat vaculitis, but then if you happen to go to more than one doctor and they each use different terminology then the patient can become confused about how their illness is responding and how they are physically doing.
Monday, January 16, 2012
Celebrations, Little Birdies and a Football!
For my first post of the new year I've got excellent news! News that I meant to post a while back and just kept forgetting. I will blame my forgetfulness on the prednisone, because it is my go to scape goat for everything.
For starters the tweeting thing, yup, we totally won! The Vasculitis Foundation will be featured on Broadcause during the week of February 13th through the 19th! The link is to our page on Braodcause where you can find information and donate and what have you. I want to thank everyone that voted/tweeted (specifically all those people I cajoled, bribed, blackmailed, and threatened into it. Not really, I don't do those things.) In other twitter news, my twitter has not become an awareness platform, but a random soundbite platform for my random typings.
The other great news is that, for the first time in over a year, my bloodwork came back all in normal ranges! They are going to let me drop my prednisone to 5 mg a day if I am feeling okay in a few weeks! I am circling ever so closer to a period of quiet or remission or whatever terminology you wish to use. They don't know what I'm doing right, but they want me to stay my course. Which probably means I still can't go back to work for a while yet.
During my next visit in February they are going to decide if I need to continue coming back every month or if we can move out my appointments to longer increments!
I am also aware that some people might not like the Denver Broncos, or Tim Tebow. I don't really follow football so I couldn't tell you anything about the guy. I only bring him up because, as part of the Make a Wish Foundation he spent some time before one of his games with a young 16 year old girl who suffers from Wegener's like I do. She has been diagnosed for several years and has undergone over 70 surgeries. She has had one lung removed and exhibits the "saddle nose" deformity common in the disease. She is still a beautiful girl, though, and no matter how much she has gone through the pictures of her with her family as she is meeting Tim Tebow show a girl full of life and ready to face the challenges she has been given. I can only hope that I can face my future with as much grace as she appears to.
The press tracking Tebow as he is a star have shed some light on Wegener's and the problems that patients can face.
For starters the tweeting thing, yup, we totally won! The Vasculitis Foundation will be featured on Broadcause during the week of February 13th through the 19th! The link is to our page on Braodcause where you can find information and donate and what have you. I want to thank everyone that voted/tweeted (specifically all those people I cajoled, bribed, blackmailed, and threatened into it. Not really, I don't do those things.) In other twitter news, my twitter has not become an awareness platform, but a random soundbite platform for my random typings.
The other great news is that, for the first time in over a year, my bloodwork came back all in normal ranges! They are going to let me drop my prednisone to 5 mg a day if I am feeling okay in a few weeks! I am circling ever so closer to a period of quiet or remission or whatever terminology you wish to use. They don't know what I'm doing right, but they want me to stay my course. Which probably means I still can't go back to work for a while yet.
During my next visit in February they are going to decide if I need to continue coming back every month or if we can move out my appointments to longer increments!
I am also aware that some people might not like the Denver Broncos, or Tim Tebow. I don't really follow football so I couldn't tell you anything about the guy. I only bring him up because, as part of the Make a Wish Foundation he spent some time before one of his games with a young 16 year old girl who suffers from Wegener's like I do. She has been diagnosed for several years and has undergone over 70 surgeries. She has had one lung removed and exhibits the "saddle nose" deformity common in the disease. She is still a beautiful girl, though, and no matter how much she has gone through the pictures of her with her family as she is meeting Tim Tebow show a girl full of life and ready to face the challenges she has been given. I can only hope that I can face my future with as much grace as she appears to.
The press tracking Tebow as he is a star have shed some light on Wegener's and the problems that patients can face.
Sunday, December 4, 2011
Hurk Hurk
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| Bet you can't tell what this post is going to be about! Warning, this one might get a bit nasty. |
Back in October it was decided that maybe part of, or most of, my dry heaving/gagging/nausea/sometimes vomiting was due to a gall stone instead of my chemo. A single thing, about an inch to an inch and a half wide wedged in the neck of my gall bladder, the removal of which cost me an overnight stay in the hospital watching bad TV and having my attempts at sleep forever frustrated by a very determined candy striper that wouldn't leave the lights alone in my room.
For a time this seemed to help the sometimes vomiting portion of my problem. Things were looking great!
Then, as November began its too quick turn into December things began to go terribly wrong. My equation went from dry heaving/gagging/nausea/sometimes vomiting to VOMITING EVERYDAY with a side of dry heaving/gagging/sometimes nausea.
I find myself retching into the toilet every time I eat. Hard enough that my ribs pop, my neck cracks and I swear one time my shoe was expelled past my lips to float in the bowl like some limp, dead fish.
Like the other day. I get it into my head to do a little bit of a stir fry thing for lunch. I put the veggies in the pan, got some noodles to put in there, things were going awesome. It was going to taste delicious and be the best lunch I've ever fixed for myself ever. Not too mention the fact that it was healthy! Double points!Not too mention the fact that it tasted wonderful.
It tasted wonderful all the way to the bathroom where I then purged everything. I don't even think I made it all the way into the bathroom for that one. It's just a good thing I have decent aim.
After upchucking not just my meal, but probably everything I had eaten in the last seven years, I began to wonder how it was that I am still so fat. That's when it came to me.
Vegetables.
My meal was kind of healthy and apparently hard to digest. I don't think it's confirmed at all, but, my theory is that junk food is just easy to process since there's nothing to it but calories.
This makes me sad, I actually like vegetables and fruit.
Now, there's some question as to whether my vomiting is due to my gall bladder or not. The doctors were hoping having it out would solve the problem, but it might actually be due to my Imuran so they've also lowered that at the moment to see if it would help. It hasn't.
But I am well on my way to figuring out the possibilities of puking up your own bones!
Thursday, December 1, 2011
More Awareness
I know, I know, I talk about awareness A LOT, but we always need more of it. Always.
For many awareness equals ribbons! Lots and lots of ribbons!
Vasculitis doesn't have it's own ribbon, unfortunately. Currently we are kind of borrowing the ribbon color for AIDS (it's AIDS awareness day, BTW) which causes some problems. For one thing, it make people assume you have AIDS for another, it can lessen the impact of the AIDS awareness ribbons. This isn't something we want, but we're kind of limited in color options.
AIDS had the first ribbon, it was red. The Susan G. Kolman foundation then latched onto this idea of ribbons and changed the color to pink for themselves (funny, they can take the ribbon idea from AIDS but when the Vasculitis Foundation wanted to use the word "cure" in their slogan Susan G. Kolman threatened to sue because it would "confuse people").
There are many different ways some of us are trying to raise awareness for ourselves. Weggies Unite suggests having a a pajama AI day. Check out the link, it is an awesome idea! Maybe if we can get a symbol for ourselves we can make actual autoimmune pajamas for people to buy and wear.
We tried the Chase Giving thing, but apparently there were issues with certain groups cheating and using robot voters. We're still trying, several people have started doing drives of their own, trying to raise awareness in their own ways. Friends can help too. They can read about vasculitis, they can talk to others about vasculitis, suggest it for school fundraisers, work fundraisers. Whatever. Every little drop in the bucket helps!
Wednesday, November 30, 2011
Sad Robot Disease
Having an invisible illness can be a daily struggle. When taking public transport or using my handicapped placard in my car I am always very aware of what other people might be thinking of me. I don't look handicapped. I look healthy. But there are some days when I just don't have the energy level to walk through a store or I am in too much pain to walk long distances. This is when I get the 'looks' from people or the snide comments about how "Yeah, she's really disabled."
The hardest looks and comments can come from friends and family that don't understand, though.
Sometimes it can be hard for them to understand just what it takes to bring yourself to a party. They think you are faking or malingering when you say that, "No, I really need to leave early."
This is what brings me back to the video. Even though the cartoon appears to be between a sad robot with some kind of sad robot disease and a not sad, but kind of mean, robot this is what a real conversation can be like. Sometimes people think you are faking, other times they want to talk about their own health concerns or another friends' and then talk about how they were able to "get over it". These conversations can be difficult to handle and sometimes it is better to get out of them as fast as possible.
Really, though, if you are going to make the effort to go out to a party. Get dressed up. Expend the energy to ride or drive over and speak with people. Talking about your health problems is not the best thing for you to do. Sometimes it is good to get out of your problems. That's what the party is for. For you to feel normal for a little bit of time. Even if you have to leave early, can't eat some of the food offered, try to make the best of it (if this involves asking the host to fix something specific for you, or even offering to bring it yourself). It can do wonders for your health.
The other thing this video made me think- I should start telling people that I have Sad Robot Disease. It would make as much sense as Wegener's current name AND I would get the same quizzical looks when I say the actual name.
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!
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| 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.
Monday, October 31, 2011
Happy Halloween
I do have some important stuff to post about life wise, but for today, in honor of the holiday, I am going to post a work of fiction. It's related, but there will be zombies. .
Friday, October 7, 2011
Lonely Girl
Have you ever had one of those times where your listening to some music and a song comes on that seems to fit your mood absolutely perfect? Cause it just happened to me.
The song is called Lonely Girl by the fierce lady P!nk. I'm not going to debate whether you think the song or artist is good or not, so kindly keep your thoughts to yourself.
I know it seems adolescent and immature to say that "This song totally fits my life" but as music is an expression of feelings it stands to reason that someone somewhere is going to capture what you might be feeling and express it in such a way that others can maybe know a little bit.
If you read this blog in any capacity you know I've had a pretty rough year, from diagnosis where I almost died to last month, which was particularly hellish and I've had to re-evaluate a lot of what I thought my life was very recently.I try not to let it bother me, I try to keep a positive attitude and think that these things are temporary, but sometimes life has a way of trying to overwhelm you.
Overall the entire song speaks to me, but these lines in particular "I'm lookin' for a way to become The person that I dreamt of when I was sixteen Oh, nothin' is ever enough Ooh, baby, it ain't enough for what it may seem"actually caused me to stop what I was doing.
Right now it seems like no matter what I do, in any area of my life, is enough. For every step forward I try to make, I seem to make two steps back. In my life and treatments. Yet I am still going to keep pushing forward, if one way doesn't work I am going to try something else. My dreams may have to be tweaked or put on hold, but I am going to keep striving for them.
If any of you that read this blog feel the same, know that you are not alone and that we must keep fighting!
The song is called Lonely Girl by the fierce lady P!nk. I'm not going to debate whether you think the song or artist is good or not, so kindly keep your thoughts to yourself.
I know it seems adolescent and immature to say that "This song totally fits my life" but as music is an expression of feelings it stands to reason that someone somewhere is going to capture what you might be feeling and express it in such a way that others can maybe know a little bit.
If you read this blog in any capacity you know I've had a pretty rough year, from diagnosis where I almost died to last month, which was particularly hellish and I've had to re-evaluate a lot of what I thought my life was very recently.I try not to let it bother me, I try to keep a positive attitude and think that these things are temporary, but sometimes life has a way of trying to overwhelm you.
Overall the entire song speaks to me, but these lines in particular "I'm lookin' for a way to become The person that I dreamt of when I was sixteen Oh, nothin' is ever enough Ooh, baby, it ain't enough for what it may seem"actually caused me to stop what I was doing.
Right now it seems like no matter what I do, in any area of my life, is enough. For every step forward I try to make, I seem to make two steps back. In my life and treatments. Yet I am still going to keep pushing forward, if one way doesn't work I am going to try something else. My dreams may have to be tweaked or put on hold, but I am going to keep striving for them.
If any of you that read this blog feel the same, know that you are not alone and that we must keep fighting!
Tuesday, September 27, 2011
Raising Awareness
After having to postpone my fundraiser yard sale due to being really sick I finally managed to get it completed. Sort of. Turns out, it was a very popular thing, so popular that I am holding it over for this Saturday too! I'm not sure exactly how much awareness was raised, not many people stopped to read the signs unfortunately, but I at least have over $300 to donate towards vasculitis research!
The timing of this was also kind of serendipitous as my fundraising events are currently coinciding with the birthday of Lauren Currie, a young girl who died last year of Wegener's Granulomatosis. She would have been 16 today if her doctors had been able to recognize the disease she was suffering from before it was too late.
While the Lauren Currie foundation is not a US charity, I would still like to spread the word about their organization. It was set up by Lauren's parents in the hopes of raising funds and awareness for vasculitis.
In honor of Lauren's birthday, most of us in the vasculitis community and our friends have chosen to display the foundation logo and spread the word about Lauren's story and the foundation.
The timing of this was also kind of serendipitous as my fundraising events are currently coinciding with the birthday of Lauren Currie, a young girl who died last year of Wegener's Granulomatosis. She would have been 16 today if her doctors had been able to recognize the disease she was suffering from before it was too late.
While the Lauren Currie foundation is not a US charity, I would still like to spread the word about their organization. It was set up by Lauren's parents in the hopes of raising funds and awareness for vasculitis.
In honor of Lauren's birthday, most of us in the vasculitis community and our friends have chosen to display the foundation logo and spread the word about Lauren's story and the foundation.
Monday, September 19, 2011
The Silver Lining
Okay, lately I have been posting about really negative things. Granted, it's been a really crappy time (September has done nothing but gotten worse, let me tell you). So, to help get me out of this negative state of mind I am going to try and look at the silver lining.
 | |
| No matter how dark the clouds and all that... |
- For starters, nearly a year on chemo, I don't really have to shave my legs much anymore.
- Now that I have been told I can't work for a while, I'll have time to finish that novel I've always wanted to write.
- I'm going to be saving money on puppy daycare, as, I will be home.
- All of the vomiting and dry heaving is going to leave me with abs of steel. Steel I say!
- I had to postpone my yard sale fundraiser because I was sick, meaning that I didn't have to do it on a rainy weekend!
- I am attempting to work a vacation to Disneyland into my treatment (less stress, relaxing, that diagnosis says vacation to me)
- I have time to catch up on all those tv shows and movies that I've been meaning to watch
- The same with all the books on my reading list
- All the drugs have given me really strange dreams, providing some inspiration for said novel mentioned in number 2
Saturday, September 3, 2011
And Then Came Thursday......
After my last post I decided I should put on my big girl pants. I figured I could handle whatever the world wanted to dish out.
This scene kept playing in my head (from one of the best Disney movies ever, The Emperor's New Groove). That's the way I was going to handle things. That's the way I still like to think I am going to handle things.
Life took me up on my offer, unfortunately.
My week progressed decently. I was setting up my classroom, working well with my co-teacher. I was going to have a great week. Tuesday I began to sneeze. I figured, well, we had a lot of rain so the mold level is high and I've got allergies. Wednesday, still sneezing and now I have a cough. That's okay, I'm fine. It's just a cold or something. I'll take it easy, at work and then head to the doctor if I'm not better by Friday.
And then came Thursday.
Thursday was just all out to mess up my week, or life. Thursday came on strong. I had a nasty chest, flemy, bloody cough that had me thinking, Friday is going to have to suck it. I'm going to leave work early and go to the doctor today.
Thursday wouldn't even let me do this! No. Thursday went all out and pulled no punches. It didn't just throw the kitchen sink at me, it threw a semi truck at me. Literally. On the freeway. Needless to say, there was an accident and I didn't make it into work.
I was so shaken up that I had to have my father come get me and then come back later for my car. I wasn't hurt, but because the semi swerved into my lane I had to swerve and the guy driving behind/next to me also swerved and rolled his Jeep. Thankfully he was not really hurt, he was standing on his own and the only visible damage to him were his cut fingers. The semi drove off.
I'm not really sure what is going to come of all this; I wasn't issued a ticket at the time, nor was I given a report number, the guy from the Jeeps name or information or any way to figure out what is going on. The police took my statement, information and told me to leave. I still feel terrible about it, writing about it is kind of cathartic.
By the time I got home I had forgotten about calling the doctor and it was a good thing that my mom has my best interests in heart because she came home, made the appointment and took me to it. I kept thinking that the day couldn't get much worse after my pre-8-o-clock disaster, but it did.
After two days my allergies or cold or flu or what have you had progressed into an ear infection, bronchitis on its way to becoming pneumonia, a sinus infection and oh, by the way, your throat is swelling up. You maybe need to go to the hospital. This suggestion was from the same doctor that sent me home back in December when I was hacking up blood with one round of antibiotics and the assurance that I'd be better in a week.
Luckily, I didn't have to go in. Just put on a really strong antibiotic and given steroid shots. I was also being put on my strict promise that, if I wasn't much better by Friday I would come back in for more shots and or a hospital stay. I did not call back on Friday. I spent the entire day in bed. I didn't get up. I didn't even get dressed. I did feel a little bit better (which was why I decided not to call, not just because I didn't want to go to the hospital).
It makes me wonder, though, how much I am going to be able to work this year. It only took two days for me to progress from just a sneeze to being threatened with hospitalization. This is how immunosuppressed I am.
I want to hide under a rock now.
This scene kept playing in my head (from one of the best Disney movies ever, The Emperor's New Groove). That's the way I was going to handle things. That's the way I still like to think I am going to handle things.
Life took me up on my offer, unfortunately.
My week progressed decently. I was setting up my classroom, working well with my co-teacher. I was going to have a great week. Tuesday I began to sneeze. I figured, well, we had a lot of rain so the mold level is high and I've got allergies. Wednesday, still sneezing and now I have a cough. That's okay, I'm fine. It's just a cold or something. I'll take it easy, at work and then head to the doctor if I'm not better by Friday.
And then came Thursday.
Thursday was just all out to mess up my week, or life. Thursday came on strong. I had a nasty chest, flemy, bloody cough that had me thinking, Friday is going to have to suck it. I'm going to leave work early and go to the doctor today.
Thursday wouldn't even let me do this! No. Thursday went all out and pulled no punches. It didn't just throw the kitchen sink at me, it threw a semi truck at me. Literally. On the freeway. Needless to say, there was an accident and I didn't make it into work.
I was so shaken up that I had to have my father come get me and then come back later for my car. I wasn't hurt, but because the semi swerved into my lane I had to swerve and the guy driving behind/next to me also swerved and rolled his Jeep. Thankfully he was not really hurt, he was standing on his own and the only visible damage to him were his cut fingers. The semi drove off.
I'm not really sure what is going to come of all this; I wasn't issued a ticket at the time, nor was I given a report number, the guy from the Jeeps name or information or any way to figure out what is going on. The police took my statement, information and told me to leave. I still feel terrible about it, writing about it is kind of cathartic.
By the time I got home I had forgotten about calling the doctor and it was a good thing that my mom has my best interests in heart because she came home, made the appointment and took me to it. I kept thinking that the day couldn't get much worse after my pre-8-o-clock disaster, but it did.
After two days my allergies or cold or flu or what have you had progressed into an ear infection, bronchitis on its way to becoming pneumonia, a sinus infection and oh, by the way, your throat is swelling up. You maybe need to go to the hospital. This suggestion was from the same doctor that sent me home back in December when I was hacking up blood with one round of antibiotics and the assurance that I'd be better in a week.
Luckily, I didn't have to go in. Just put on a really strong antibiotic and given steroid shots. I was also being put on my strict promise that, if I wasn't much better by Friday I would come back in for more shots and or a hospital stay. I did not call back on Friday. I spent the entire day in bed. I didn't get up. I didn't even get dressed. I did feel a little bit better (which was why I decided not to call, not just because I didn't want to go to the hospital).
It makes me wonder, though, how much I am going to be able to work this year. It only took two days for me to progress from just a sneeze to being threatened with hospitalization. This is how immunosuppressed I am.
I want to hide under a rock now.
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