- Attend the Olympics
- Bake a Rainbow Cake
- Be In A Movie/Tv Show
Be In A Music Video(DONE! I was in the Disturbed- Liberate Video)- Be In A Play
- Be Keynote Speaker At A Conference
- Be Published In Print
- Be Published Online
- Be Someone's Maid Of Honor
- Become A Child Life Specialist
- Buy Flowers For A Complete Stranger
- Buy/Get A Motorcycle
- Camp In Yellowstone
- Chow Down On The Original Pizza In Italy
- Conquer My Fear Of Flying
- Create A Photography Website
- Dance In The Rain With Friends
- De-Clutter My Life
- Die With No Regrets
- Do Extreme Whitewater Rafting
- Do My 4th Step On A Seed Journal And Plant It
- Do Plenty Of Volunteer Work
- Drive A Motorcycle
- Eat Something Extremely Interesting And Strange
- Experience Something That Takes My Breath Away
- Experience The Power Of Niagara Falls, Canada/Usa
- Film A Wedding
- Fly In A Helicopter
- Get A Makeover
- Get A Postcard From Every State
- Get Boating License
- Get In Shape
- Get Married
- Get My Hair Professionally Dyed and Styled
- Get Postcards From Every Continent
- Get Published
- Give Spontaneous Hugs To Random People
- Go On A Cruise
- Go To A Dance With My Boyfriend (I Never Been To A Dance With A Boy)
- Go To A Music Festival
- Go Treasure Hunting
- Graduate College
- Hand Out Smiley Balloons To Strangers
- Have A Book Published
- Have A Family
- Have A Midnight Picnic
- Have A Mud Fight
- Have My First New Years Kiss With Someone I Love
- Help Restore A Classic Car
- Hire 2 Private Investigators And Have Them Follow Each Other
- Inspire Someone
- Know My Family Origins
- Learn Enlightenment From A Monk
- Learn How To Ride Motorcycle
- Learn Tibetan Buddhist Meditation
- Learn to Cook Ethic Foods
- Learn To Drive A Manual
- Make Lifelong Friends On The Road
- Make One Person's Day Better
- Master Hdr Photography
- Meet The President
- Meet Trent Reznor/See Nin In Concert
- Message In A Bottle
- Own A Gun
- Own My Own Home
- Party At Mardi Gras
- Party In Las Vegas
- Pay A Stranger's Tab At A Restaurant
- Pay For The Person Behind You At The Drive Thru Window
- Photograph A Wedding
- Pick A Random Flight And Take It
- Play Paintball
- Play Violin in a Concert for Violin for Vasculitis
- Read All The Books In My Bookcase
- Ride A Double Decker Bus
- Ride A Horse Again
- Ride A San Francisco Cable Car
- Rock Climb
- Run In A Marathon
- Save $10,000
Save Someone’s Life(DONE! I saved Thomas when he had a seizure int he park Nov 3, 2012)- Say A Prayer/Meditate In A Sacred Place
- Say Yes To Everything For One Day
- See A Live Buffalo In A Natural Setting
- See A Volcano
- See The California Redwoods
- See The Colosseum
- See The Great Pyramids
- Send A Letter To A Random Address And See If They Write Back
- Send A Message In A Bottle
- Set Foot On All 7 Continents
- Shoot A Rifle
- Sit In A Rolls-Royce
- Sleep In A Castle
- Sleep Under The Stars Again
- Speak on Capitol Hill for Rare Disease Day
- Swim In A Natural Geothermal Pool
- Swim With Dolphins
- Take 20 Photos In All 50 States
- Tour Washington D.C.
- Travel To Germany
- Travel to India
- Travel to Italy
- Twirl Fire
- Visit Nyc
- Visit The Grand Canyon
- Visit The Mall Of America
- Watch A Broadway Performance
- Watch A Traditional Opera
- Watch My Nephew Graduate
- Watch My Nieces Graduate High School
- Win A Writing Competition
- Witness A Volcano Erupt
- Write a Letter to Everyone I Love/Care For and Give it to Them
Wednesday, October 30, 2013
My Bucket List
Monday, October 14, 2013
Sometimes Blood is Thinner than Water...
THIS IS A VERY LONG BLOG, AND IT IS IN DEPTH AND CONTAINS A LOT OF INFORMATIONAL LINKS. (I would ask you actually take the time to look at the links of the things I provided for reference here, so you can get an understanding of what I mean in this post)
What does a person do when they are sick with a rare, life threatening disease, and their own family won't help with a benefit or setting up a benefit fund at least, because they don't think your illness is that serious because they never heard of it? Already I was accused of lying about being in school (because I have missed a lot of class thanks to a flare up of the MPA), lying about being sick (because there is lack of data on MPA, and it is not out there in awareness like cancer, ms or the like), and being selfish (when there are people with more serious diseases like cancer who need help.) I am just shaking my head. At this point I am unsure where to go with this. My medical expenses are growing, but I can't do what I need to do thanks to insurance not covering these things, and I am behind on bills and living expenses cause I can't work right now. So...I just don't have the things done that could help me live a healthier more productive life, and I don't take the treatments that could help me more because I can't pay for the effects of them. I am always 2-3 bills behind every month, because let's face it...disability payments don't always cover everything.
Anyway, because of this, I asked my mom if she could help me set up a benefit fund at the credit union so I could have an event to maybe help defray some of these costs incurring, and to open up my options with treatments so I am not so limited by my insurance limitations. I get met with the above excuses. I slightly envy those whose family rallies around them when they are stricken with a terrible disease. You are lucky to have them. Appreciate them because some people don't have that. I will figure something else out I guess. Maybe I will get lucky and some other family will step up and care enough to help out with this. I am just stunned right now. If anyone has suggestions as to how I can get a fund set up so I can move forward with an event for medical and living costs because of this dumb illness, please let me know. My only other option is to sell all of my dad's stuff, but I do not want to do that, to lose the only stuff I have of my dad who is no longer with me. I know he would have stepped up to help me. I wish he was here now so I could talk to someone in the family who would not judge me
Being called selfish because I do not have a disease like cancer...well yeah I have to take chemo for the rest of my life with NO CHANCE of a permanent remission. At least with cancer (most of the time) there is hope, support, awareness, and people understand. Rare diseases such as my Vasculitis (Microscopic Polyangiitis), you are on your own. . Blah sorry for the downer blog, please keep in mind, the only way I can find others with this disease is online, and most are on Facebook so I blog to them as they have been through it and get it too. I am working on a website where we vascies can meet up and talk about these issues without fear of being judged by others as whiny or downers. We aren't. We just wish people would understand that just because you haven't heard of a disease, it is not less deadly than one you hear of every day.
Fact is Cancer is horrible and it can and often does kill. So does vasculitis, which is in my case a systemic disease (meaning any part of my body can become involved. *Think of stave 4 cancer that has spread through the entire body and is shutting down every organ a person has, rendering them unable to function..MPA is like stage 4 cancer* My blood vessels are being attacked daily by my immune system, so they inflame, break, and tear. Some stop working, so blood flow stops going to skin, stomach, kidneys, lungs, brain...etc. I am at risk of spontaneous intestinal bleed outs, spontaneous lung hemorrhages, rapid kidney failure and more.) Both cancer and Vasculitis is treated similar, with harsh chemotherapy drugs, infusions, and high dose steroids. Yes the doses are different, but the amount of time you are on it is longer with disease like mine than with cancer. Cancer there are rotations of treatment. Blocks of weeks or months of treatment before they stop and hopefully it was enough to put that nasty cancer into remission. With MPA, you are on chemo drugs, sometimes for the rest of your life every week, month, or day depending on type (oral, IV, injection, etc). Sometimes there is a thing called plasmapheresis which basically is them filtering your blood out of your body, separating the plasma from your blood and returning the blood to you minus the part that is harming you. Because people do not seem to understand this disease, and how it is as dangerous and horrible as cancer, I am going to put out there some things we go through. And please don't think I am minimizing cancer, I am not. In fact I aim to show that it is wrong to say one disease is worse than another, when, in fact both kinds of disease are horrible and I wish for cures for MPA, Vasculitis, Cancer, and more. I simply just want to show the people who say that "at least I don't have cancer" that my disease is as serious, and I can die from this as well.
EXAMPLES OF TYPES OF DOCTORS PEOPLE WITH VASCULITIS HAVE TO SEE REGULARLY ARE:
SOME OF THE MEDICATIONS VASCULITIS PATIENTS NEED TO TAKE DAILY/WEEKLY/MONTHLY ARE:
Chemotherapy Agents:
Anti-Immune Agents:
Infusion Medications:
Corticosteroids:
Medications Still Being Tested/Experimented For Vasculitis (But are being used) are:
Again this is not a complete list of drugs we have to take. There are many other drugs used to treat the symptoms, and complications from each organ problem, medication effect, and more.
PROCEDURES VASCULITIS PATIENTS ENDURE FOR TREATMENT:
Now for some of the fun things Vasculitis Patients go through (Taken from Hopkins Vasculitis):
The symptoms of vasculitis depend on the particular blood vessels that are involved by the inflammatory process.
Different types of vasculitis involve blood vessels in characteristic locations throughout the body. For example, Giant Cell Arteritis typically involves the medium– to large–sized blood vessels supplying the head and neck, but rarely involves the blood vessels of the kidneys. In contrast, Wegener’s Granulomatosis (GPA) frequently involves the kidneys, very often the lungs, and almost always the upper respiratory tract, but rarely blood vessels to the brain. As depicted in the image below, Buerger’s disease involves the fingers and (toes). Gangrene can result from a profound lack of blood flow.
Different types of vasculitis have characteristic (localized) patterns of blood vessel involvement. However, vasculitis is a systemic illness. Thus, patients with vasculitis feel sick. They often have fevers, weight loss, fatigue, a rapid pulse, and diffuse aches and pains that are difficult to pinpoint. It has been said that vasculitis is a “hurting disease”, because it is so commonly associated with pain of one type or another: pain from a nerve infarction, pain from insufficient blood to the gastrointestinal tract, pain from skin ulcers. In some cases, however, identifying the source and underlying cause of the pain is extremely challenging. In addition to these diffuse, poorly–localized “constitutional symptoms”, vasculitis may involve virtually every organ system in the body.
A variety of rashes, the most classic of which is “palpable purpura” –purplish–red spots, usually found on the legs. These spots can usually be felt by the examiner’s fingertips, hence the descriptor “palpable”. The image below is a classic example of palpable purpura. These lesions result from the leakage of blood into the skin through inflamed, damaged blood vessels. They tend to occur in “crops”.
Repeated bouts of purpura may lead to hyperpigmented areas of the skin, as shown below.
Pictured below is an example of Henoch-Schönlein purpura: cutaneous vasculitis manifested by palpable purpura and arthritis (note the right ankle swelling). The diagnosis was confirmed by a skin biopsy, with immunofluorescence positive for IgA deposition witin blood vessel walls.
Below is an image of a CAT scan of the lungs of a 73 year–old woman complaining of constitutional symptoms, shortness of breath, and bloody sputum. The patient also had glomerulonephritis, a positive P–ANCA, and antibodies to myeloperoxidase. The diagnosis of microscopic polyangiitis was made.
Eleven days later, as the patient’s symptoms worsened, a chest X–ray confirmed progression of her lung hemorrhage. The X–ray shows fluffy infiltrates in both lungs, representing bleeding from damaged capillaries.
A LIST OF THE DIFFERENT TYPES OF VASCULITIS:
Largest arteries: aorta and major branches:
Small and medium-sized arteries:
This is by no means a complete list. There are vasculitis that happens due to viruses, cancers, and other diseases.
As you can see, these diseases may be rare, but they are NOT mild. The ARE deadly. And YES they ARE as bad as cancer, but what makes them slightly worse is the fact nobody seems to care or understand them. If you have cancer, your family and friends will be there to support you, throw beniftis, help out. They understand when you can't go anywhere cause you are sick. With vasculitis, what you hear from patients every day (including myself) consist of, it is all in your head, if you just got out and excersized more, at least you don't have cancer, it can't be that bad, you don't look sick, quit feeling sorry for yourself, if it was so dangerous why haven't I heard of it, and you are making a big deal out of nothing. It sucks. It does. So, while I am not trying to compare cancer as a disease to vasculitis as a disease (as they both can kill and you go through hell treating them both), I am comparing people's reactions and willingness to understand and help you. Google Cancer Patient Foundations you get About 293,000,000 results. Google Vasculitis Patient Foundations you get About 581,000 results. And MOST of them are repeating the same three websites of information. You see my point?
We as patients NEED to fight this illness. More importantly we all need to do what cancer patients did, what breast cancer patients did, what MS patients, AIDS patients, Autism patients did...we need to educate. Contact your local media and ask if they would do a story on your illness for Vasculitis Awareness Month. Take advantage of rare disease day. Host educational events. Go to health fairs and give out information. Contact clinics and hospitals and ask them to start a support group, or to host an educational symposium. The reason they have all the press is they fought long and hard for it. We need to do the same. If you are a friend or family member of someone with Vasculitis...speak up. Wear the Vasculitis awareness bracelets. Get a vasculitis awareness ribbon for the car. Get a button for your bag or lapel. (ask me how to get them and I will give you directions where to get them) If your loved one asks for help putting on an event, help them. The other disease patients couldn't do it alone. They got help form friends and family, and got backing. If we want the same care about our disease, to save lives, to make ours easier, and so no one else has to be diagnosed via autopsy like in man vasculitis patients cases, we NEED to stand up and be heard.
I would like to say that those who do care, thank you. If any of you are willing to help me set up a benefit fund and event so I can cover medical and living costs while I fight for my life, please get a hold of me. You can find my information on my blogger profile, or ask for it on here and I will give it to you. And next time you judge, or say "at least it is not cancer" think about what you are saying. Pinning one disease over another when they are equally deadly and both very hard to get treatment for, you are only causing harm to the individual. Shaming does not make a person heal and trust me we are down enough because our bodies have us trapped. Try picturing your body as a prison that you can't escape. You can't do anything you love any more. Then maybe you will see it. Thanks :)
What does a person do when they are sick with a rare, life threatening disease, and their own family won't help with a benefit or setting up a benefit fund at least, because they don't think your illness is that serious because they never heard of it? Already I was accused of lying about being in school (because I have missed a lot of class thanks to a flare up of the MPA), lying about being sick (because there is lack of data on MPA, and it is not out there in awareness like cancer, ms or the like), and being selfish (when there are people with more serious diseases like cancer who need help.) I am just shaking my head. At this point I am unsure where to go with this. My medical expenses are growing, but I can't do what I need to do thanks to insurance not covering these things, and I am behind on bills and living expenses cause I can't work right now. So...I just don't have the things done that could help me live a healthier more productive life, and I don't take the treatments that could help me more because I can't pay for the effects of them. I am always 2-3 bills behind every month, because let's face it...disability payments don't always cover everything.
Anyway, because of this, I asked my mom if she could help me set up a benefit fund at the credit union so I could have an event to maybe help defray some of these costs incurring, and to open up my options with treatments so I am not so limited by my insurance limitations. I get met with the above excuses. I slightly envy those whose family rallies around them when they are stricken with a terrible disease. You are lucky to have them. Appreciate them because some people don't have that. I will figure something else out I guess. Maybe I will get lucky and some other family will step up and care enough to help out with this. I am just stunned right now. If anyone has suggestions as to how I can get a fund set up so I can move forward with an event for medical and living costs because of this dumb illness, please let me know. My only other option is to sell all of my dad's stuff, but I do not want to do that, to lose the only stuff I have of my dad who is no longer with me. I know he would have stepped up to help me. I wish he was here now so I could talk to someone in the family who would not judge me
Being called selfish because I do not have a disease like cancer...well yeah I have to take chemo for the rest of my life with NO CHANCE of a permanent remission. At least with cancer (most of the time) there is hope, support, awareness, and people understand. Rare diseases such as my Vasculitis (Microscopic Polyangiitis), you are on your own. . Blah sorry for the downer blog, please keep in mind, the only way I can find others with this disease is online, and most are on Facebook so I blog to them as they have been through it and get it too. I am working on a website where we vascies can meet up and talk about these issues without fear of being judged by others as whiny or downers. We aren't. We just wish people would understand that just because you haven't heard of a disease, it is not less deadly than one you hear of every day.
Fact is Cancer is horrible and it can and often does kill. So does vasculitis, which is in my case a systemic disease (meaning any part of my body can become involved. *Think of stave 4 cancer that has spread through the entire body and is shutting down every organ a person has, rendering them unable to function..MPA is like stage 4 cancer* My blood vessels are being attacked daily by my immune system, so they inflame, break, and tear. Some stop working, so blood flow stops going to skin, stomach, kidneys, lungs, brain...etc. I am at risk of spontaneous intestinal bleed outs, spontaneous lung hemorrhages, rapid kidney failure and more.) Both cancer and Vasculitis is treated similar, with harsh chemotherapy drugs, infusions, and high dose steroids. Yes the doses are different, but the amount of time you are on it is longer with disease like mine than with cancer. Cancer there are rotations of treatment. Blocks of weeks or months of treatment before they stop and hopefully it was enough to put that nasty cancer into remission. With MPA, you are on chemo drugs, sometimes for the rest of your life every week, month, or day depending on type (oral, IV, injection, etc). Sometimes there is a thing called plasmapheresis which basically is them filtering your blood out of your body, separating the plasma from your blood and returning the blood to you minus the part that is harming you. Because people do not seem to understand this disease, and how it is as dangerous and horrible as cancer, I am going to put out there some things we go through. And please don't think I am minimizing cancer, I am not. In fact I aim to show that it is wrong to say one disease is worse than another, when, in fact both kinds of disease are horrible and I wish for cures for MPA, Vasculitis, Cancer, and more. I simply just want to show the people who say that "at least I don't have cancer" that my disease is as serious, and I can die from this as well.
EXAMPLES OF TYPES OF DOCTORS PEOPLE WITH VASCULITIS HAVE TO SEE REGULARLY ARE:
- Rheumatologist
- Infectious Disease (ID) Specialist
- Dermatologist
- Pulmonologist
- Nephrologist
- Neurologist
- Cardiologist
- Otolaryngologist/Ear, Nose & Throat Specialist
- Gastroenterologist
- Pain Management Specialist
- Physiatrist/Rehabilitation Physician
- Reproductive Endocrinologist
- Sleep Specialist
- Oncologist
- Immunologist
- Hematologist
- Ophthalmologist
- Urologist
SOME OF THE MEDICATIONS VASCULITIS PATIENTS NEED TO TAKE DAILY/WEEKLY/MONTHLY ARE:
Chemotherapy Agents:
Anti-Immune Agents:
Infusion Medications:
Corticosteroids:
Medications Still Being Tested/Experimented For Vasculitis (But are being used) are:
Again this is not a complete list of drugs we have to take. There are many other drugs used to treat the symptoms, and complications from each organ problem, medication effect, and more.
PROCEDURES VASCULITIS PATIENTS ENDURE FOR TREATMENT:
- Apheresis (most commonly Plasmapheresis)
- Angioplasty
- Dialysis
- Transplants (Kidney, Lungs, Liver, Eyes, Heart, Skin etc)
- Amputations
- Skin Grafts
Now for some of the fun things Vasculitis Patients go through (Taken from Hopkins Vasculitis):
The symptoms of vasculitis depend on the particular blood vessels that are involved by the inflammatory process.
Different types of vasculitis involve blood vessels in characteristic locations throughout the body. For example, Giant Cell Arteritis typically involves the medium– to large–sized blood vessels supplying the head and neck, but rarely involves the blood vessels of the kidneys. In contrast, Wegener’s Granulomatosis (GPA) frequently involves the kidneys, very often the lungs, and almost always the upper respiratory tract, but rarely blood vessels to the brain. As depicted in the image below, Buerger’s disease involves the fingers and (toes). Gangrene can result from a profound lack of blood flow.
Different types of vasculitis have characteristic (localized) patterns of blood vessel involvement. However, vasculitis is a systemic illness. Thus, patients with vasculitis feel sick. They often have fevers, weight loss, fatigue, a rapid pulse, and diffuse aches and pains that are difficult to pinpoint. It has been said that vasculitis is a “hurting disease”, because it is so commonly associated with pain of one type or another: pain from a nerve infarction, pain from insufficient blood to the gastrointestinal tract, pain from skin ulcers. In some cases, however, identifying the source and underlying cause of the pain is extremely challenging. In addition to these diffuse, poorly–localized “constitutional symptoms”, vasculitis may involve virtually every organ system in the body.
What organ systems may be affected?
- Skin
- Joints
- Lungs
- Kidneys
- Gastrointestinal tract
- Blood
- Sinuses, nose, and ears
- Eyes
- Brain
- Nerve
It is important to note that not every organ system will be affected in every patient. The pattern of organ involvement (and symptoms) is unique to the individual, as well as the type of vasculitis (category).
A variety of rashes, the most classic of which is “palpable purpura” –purplish–red spots, usually found on the legs. These spots can usually be felt by the examiner’s fingertips, hence the descriptor “palpable”. The image below is a classic example of palpable purpura. These lesions result from the leakage of blood into the skin through inflamed, damaged blood vessels. They tend to occur in “crops”.
Repeated bouts of purpura may lead to hyperpigmented areas of the skin, as shown below.
Symptoms range from full–blown arthritis to aches in the joints without obvious swelling (arthralgias).
Pictured below is an example of Henoch-Schönlein purpura: cutaneous vasculitis manifested by palpable purpura and arthritis (note the right ankle swelling). The diagnosis was confirmed by a skin biopsy, with immunofluorescence positive for IgA deposition witin blood vessel walls.
Cough (particularly coughing up blood), shortness of breath, a pneumonia–like appearance to a patient’s chest X–ray, lung “infiltrates”, and the development of cavities in the lungs.
Below is an image of a CAT scan of the lungs of a 73 year–old woman complaining of constitutional symptoms, shortness of breath, and bloody sputum. The patient also had glomerulonephritis, a positive P–ANCA, and antibodies to myeloperoxidase. The diagnosis of microscopic polyangiitis was made.
Eleven days later, as the patient’s symptoms worsened, a chest X–ray confirmed progression of her lung hemorrhage. The X–ray shows fluffy infiltrates in both lungs, representing bleeding from damaged capillaries.
Red blood cells (usually invisible to the naked eye), clumps of red blood cells (known as “casts”, also invisible to the naked eye), and loss of protein in the urine. May lead to renal insufficiency and the requirement of dialysis. Depicted in the figure below is a single glomerulus (the filtering unit of the kidneys; each kidney has approximately 1 million glomeruli). This glomerulus is involved actively by an inflammatory process, particularly evident in the bottom of the figure.
Abdominal pain, bloody diarrhea, perforation of the intestines.
Anemia (low hematocrit or red blood cell count) and/or a slightly elevated white blood cell count.
Chronic sinus congestion and “infections” that persist for longer than they should; hearing loss; inflammation of the nasal septum, sometimes resulting in a perforation or collapse of the bridge of the nose, as shown in the picture below.
May affect either blood vessels to the eyes, causing the sudden loss of vision, or small blood vessels withinthe eyes, leading to retinal problems, thinning of the sclera (the white part of the eyes), inflammation within the eye’s different chambers, and conjunctivitis (“pinkeye”). Pictured below is an example of retinal vasculitis in a patient with systemic lupus erythematosus (lupus). The white areas represent regions of retinal infarction caused by vasculitis.
Headaches, strokes, changes in mental status, difficulty with coordination. Below, a magnetic resonance (MR) imaging study of the brain in central nervous system vasculitis demonstrates an intra–cerebral hemorrhage (bright area).
Shooting pains in the arms and legs, numbness, and asymmetrical weakness (i.e., weakness that involves one side of the body more than the other).
A LIST OF THE DIFFERENT TYPES OF VASCULITIS:
Largest arteries: aorta and major branches:
- Giant Cell Arteritis
- Takayasu's Arteritis
- Aortitis in Cogan's Syndrome
- Aortitis in Spondylarthropathies
- Isolated Aortitis
Small and medium-sized arteries:
- ANCA-Associated Vasculitis
- Granulomatosis with Polyangiitis (former name: Wegener's Granulomatosis)
- Microscopic Polyangiitis (THIS IS THE TYPE I HAVE)
- Eosinophilic granulomatosis with polyangiitis (Churg-Strauss) (THIS IS NOT RULED OUT AND A VERY REAL POSSIBILITY)
- Primary Angiitis of the Central Nervous System
- IgA Vasculitis (Henoch-Schönlein)
- Cuteaneous Leukocytoclastic Angiitis (Vasculitis related to rheumatoid arthritis, systemic lupus erythematosus and Sjögren's syndrome.)
- Cryoglobulinemic vasculitis
- Anti-GBM disease (Goodpasture's)
- Hypersensitivity Vasculitis (Drug-induced vasculitis)
This is by no means a complete list. There are vasculitis that happens due to viruses, cancers, and other diseases.
As you can see, these diseases may be rare, but they are NOT mild. The ARE deadly. And YES they ARE as bad as cancer, but what makes them slightly worse is the fact nobody seems to care or understand them. If you have cancer, your family and friends will be there to support you, throw beniftis, help out. They understand when you can't go anywhere cause you are sick. With vasculitis, what you hear from patients every day (including myself) consist of, it is all in your head, if you just got out and excersized more, at least you don't have cancer, it can't be that bad, you don't look sick, quit feeling sorry for yourself, if it was so dangerous why haven't I heard of it, and you are making a big deal out of nothing. It sucks. It does. So, while I am not trying to compare cancer as a disease to vasculitis as a disease (as they both can kill and you go through hell treating them both), I am comparing people's reactions and willingness to understand and help you. Google Cancer Patient Foundations you get About 293,000,000 results. Google Vasculitis Patient Foundations you get About 581,000 results. And MOST of them are repeating the same three websites of information. You see my point?
We as patients NEED to fight this illness. More importantly we all need to do what cancer patients did, what breast cancer patients did, what MS patients, AIDS patients, Autism patients did...we need to educate. Contact your local media and ask if they would do a story on your illness for Vasculitis Awareness Month. Take advantage of rare disease day. Host educational events. Go to health fairs and give out information. Contact clinics and hospitals and ask them to start a support group, or to host an educational symposium. The reason they have all the press is they fought long and hard for it. We need to do the same. If you are a friend or family member of someone with Vasculitis...speak up. Wear the Vasculitis awareness bracelets. Get a vasculitis awareness ribbon for the car. Get a button for your bag or lapel. (ask me how to get them and I will give you directions where to get them) If your loved one asks for help putting on an event, help them. The other disease patients couldn't do it alone. They got help form friends and family, and got backing. If we want the same care about our disease, to save lives, to make ours easier, and so no one else has to be diagnosed via autopsy like in man vasculitis patients cases, we NEED to stand up and be heard.
I would like to say that those who do care, thank you. If any of you are willing to help me set up a benefit fund and event so I can cover medical and living costs while I fight for my life, please get a hold of me. You can find my information on my blogger profile, or ask for it on here and I will give it to you. And next time you judge, or say "at least it is not cancer" think about what you are saying. Pinning one disease over another when they are equally deadly and both very hard to get treatment for, you are only causing harm to the individual. Shaming does not make a person heal and trust me we are down enough because our bodies have us trapped. Try picturing your body as a prison that you can't escape. You can't do anything you love any more. Then maybe you will see it. Thanks :)
Saturday, October 12, 2013
What Being Ill Has Taught Me On Life
Being sick like I have been has opened my eyes to the things that matter in this world. Happiness. Life, living it to the fullest every day. Companionship. Compassion for others. To be able to live in each others shoes. I have found through being sick, through chemo drugs, through high dose prednisone, I have learned to live, oddly enough. I used to not understand sick people. I used to not want to be near them because I was uncomfortable with them. I did not know how to act. Now I do, because the shoe has been on the other foot.
Oddly enough, all I have been through in life has given me a sense of compassion for others, a love for life I would not have had otherwise. Through this illness I have gained hope. I have known fear. Failure, heartache, loneliness. I have came out the other side with Success, love, companionship. I have learned to let go and let life happen, to go with the flow. Yes, I can't do the things I used to yet. I will get there. Yes I gained a lot of weight, but I will lose it someday. My body will hopefully go into remission from this disease of mine, and I will be able to run a marathon, but until then I have dreams and goals. And from here on out I refuse to let life slip by. I have a list, and I am going to do everything on it...and every opportunity that comes my way that is good for me, and doesn't hurt others, I will take.
Life is too short to worry about the things so many worry about. Money, items, prestige, power. None of that will matter when you go. All that matters when you go are the memories you have made with those you love. They will comfort you when you are afraid, and they will be how you live on. Your money won't do that. Through your life, you stay alive, even in your death.
Why am I writing this? I have seen myself and others I care about get serious illnesses, I have seen a kid on the brink of death get a second chance at life. I have seen myself, over a year ago unable to walk, move, dress myself, or do anything...ready to give up and with months left to live without treatment slowly turn around. I can walk, even though I am slow. I can drive, have a nice place, have a great boyfriend who I adore, I am back in school...hopeless to hope, and I am ready to make more wonderful memories with those I love...because I have also lost people in my life, and the worst thing I have found about losing them is this...not having made time with them to create memories so they can stay alive in my heart. I would give the world to have that chance. I hope everyone of you takes time to make memories with people you care for, even a little bit. I know I will and am. :)
Tuesday, October 8, 2013
Pain, Weakness, and Stupidity!
Today was a simple day. I had a test at school at about 3pm. After that I had a little shopping I had to do. After that I needed to go wash my car and put gas in the car, and top off the oil. Then dinner and a meeting, fellowship and home to work on homework. Simple day right? WRONG!
Start out with the fact I could not sleep worth anything. I tossed and turned all night. I had hot flashes, and had to pee a million times thanks to swelling in my legs and feet. I get up (or try to) and I fall face first into the closet! (Actually that was yesterday I fell but my days and nights are odd so I call it today). Anyway, I get up and every single body part hurts. When I say every single part I mean it. From the head to feet, from side to side...even my hair hurt. (I am guessing it was my scalp and the hair is the sensation). I slowly got dressed which took over an hour because lifting my arms to put on deodorant was torture, the clothing on my body made me cry...bending over to put on my socks and shoes was so hard that took another 30 minutes.
Finally I am ready to go take my test. I get to the door and found that I had already become so weak and tired I could hardly walk. Going up one flight of stairs was torture! After another 10 minutes of walking out the door to my car, I find I can not lift my leg high enough to get into my truck. (I have a 2001 Dodge Durango). I ended up having to put my knee up on the running board of the truck, then get in. Driving was not easy as the weakness was increasing. I found it took both hands to control a wheel it normally takes one hand to control, and even then I was swerving like I was drunk! I wonder what that would be considered? DUI? DWI? Reckless driving? I will actually look into that and see what can be done if I was to get pulled over if this ever happens again.
I get to the school and park near the door to go into Disability Services to take my Law test. It is about 40 feet maximum from the truck to the office...it took me another 15 minutes to walk that far, and I was dragging, wheezing, dizzy and nauseated. I sat in the chairs and took my test, and amazingly I think I passed it even with brain fog and a major migraine coming on. I should note I did take two Vicodin as soon as I sat down in the testing room which I think saved the test. Yes it kicked in mid test and I was pretty much stoned out of my gourd, but the pain was at least semi tolerable enough to function.
When I was done with the test, I walked into another hall on campus to go to the school's convenience store. I have a meal plan type deal, and I needed a few things. Standing there with my items in line I found my grip starting to falter. Part of it was weakness, the other part is the pain. Carrying the bags and walking to the car I nearly passed out. People were looking at me funny, and one person asked me if I was okay. I said I think so, and thanked them for asking and kept walking.
Now, all of this seems like nothing to most people. Take away the Vasculitis I have, and the pain and 90% of people would be energetic (maybe kind of tired from the test but not exhausted!) To people without an illness this is a normal day, and most people can do this in a couple of hours and be ready to do a million more things. For me, and others like me...just the things I did to this point had me struggling to make it. Being on Chemotherapy drugs, and high dose Prednisone can take a lot out of a person, and you add illness onto it it doubles the debilitating capacity! This is why I implore anyone who has someone in their lives who has an illness, whether it is visible or invisible...try to understand. If someone says they plan to see you, and suddenly they call and say they can't make it believe them. Do not take it personally, I can promise you that it is not a personal thing! I know that I could have been told I needed to meet up with someone and I would get a million dollars, and I would have had to say I am sorry I can't.
I won't go into detail about the rest of the day. It involved going to put gas in the truck, checking fluid and putting oil in, locking my keys in the engine compartment of the truck, running into a State Patrol officer, asking him to help me unlock my truck so I could get my keys, which he did. I then went to the car wash, was told I had too much mud in the tire areas and I'd be charged more, so I left and went to whale of a wash and with my last energy I went and power blasted the underside of the truck. Went back to the car wash, went to a meeting and fellowship, and planned to hang out with my friends (I will call them C.M. & M.A.). I got a few blocks away and I almost crashed the truck into the underpass wall because my body gave out completely. I had hit the end of my "spoons." Please read about The Spoon Theory. It is worth the read and it might help you understand, or help you help others understand you.
So I am home. I barely made it. I laid down and rested, and I will have to see just ow many bits of energy I receive resting. Will I have enough to go to my two appointments and class tomorrow? I do not know. I have no choice. I have to be there. So tomorrow I am hoping for a spontaneous burst of health. Anyway, I seem to be whining in this post, but that is not my intention. I really do want to help you understand people with illnesses and pain. The end of the day I was proud of myself that I did not give up today. I did what I could, as best as I could and that is an amazing thing for me. Granted I Will have to be more careful not to push it too far again...losing control of my car would have been horrible! I need to learn my limits, but that comes in time. For now I am proud of what I have done, and hope hope hope for a better tomorrow.
For information on my disease, Microscopic Polyangiitis, please visit the Vasculitis Foundation.
To follow my updates, join my Facebook Page: Tamara's Journey of Hope.
For those without Facebook, I am starting a CaringBridge website: Tamara Wagner
For Video Updates on YouTube: Tamara's YouTube
If you have any questions, concerns, or want me to discuss a topic on future blogs feel free to submit them in a comment or email and I will respond asap! :)
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