Friday, June 20, 2014
Chronic Illness is hard...
Sometimes being chronically ill is hard. I am used to the appointments, the medications, the pain, the feeling like crap, what I am not used to, and what I will never get used to, is the fact others are disappointed in me because I need rest, or I can't do certain things. I am feeling like I would be better off if I just had no relationships with anyone,and just kept to myself. At least then I have no one to disappoint, and hearing the people you care about the most say to you that they are sick of you not being able to do anything, to be told that I am lucky I do not have to work right now, that I have it made and they wish they could have it as easy as me, well...it hurts. I really feel right now as though no one can possibly understand. I really do not feel as though I am anything right now to people but a bother. Someone people invite places out of it being the proper thing to do, but not really being into being with me because I can't do what they can. I dunno. I am very close to shutting down again, pushing everyone out of my world and being alone. It really hurts less.
Tuesday, April 1, 2014
A Note to Those Who Are Mad I Often Back Out of Plans
I am so tired of people who are angry with me for having to cancel plans, or even forgetting them, or not showing up for them, especially early in the morning, or later evening. . I have flat out told EVERYONE I am sick. I have a rare, auto-immune vasculitis called Microscopic Polyangiitis, a painful adipose tissue disorder called Lipoedema/Lipedema, Sleep Apnea, and Mental Health issues. It is not like I have kept that a secret.
Early in the morning I am groggy and often have a hard time getting up. Why? I am on medications at night to help me sleep. It is called PTSD. In PTSD I have nightmares, horrible nightmares, so I take medication to stop them and help me sleep. Often these meds leave me groggy, particularly if I do not sleep well that night from pain. Horrible pain that hurts everywhere and NOTHING helps. Of course I also add vicodin on top of the meds I take for nightmares before bed, otherwise I am up all night unable to sleep, in pain and full of anxiety.
Anyway try this experiment...take Benadryl every day for a week. 50 mg benadryl in the liquigels. Take them right before bed. Tell me it is easy for you to get up and rush right out and do things. But start it when you are overtired after spending a night getting only an hour of sleep. That is the only way you will understand how I feel.
Early in the morning I am groggy and often have a hard time getting up. Why? I am on medications at night to help me sleep. It is called PTSD. In PTSD I have nightmares, horrible nightmares, so I take medication to stop them and help me sleep. Often these meds leave me groggy, particularly if I do not sleep well that night from pain. Horrible pain that hurts everywhere and NOTHING helps. Of course I also add vicodin on top of the meds I take for nightmares before bed, otherwise I am up all night unable to sleep, in pain and full of anxiety.
Anyway try this experiment...take Benadryl every day for a week. 50 mg benadryl in the liquigels. Take them right before bed. Tell me it is easy for you to get up and rush right out and do things. But start it when you are overtired after spending a night getting only an hour of sleep. That is the only way you will understand how I feel.
During the day I attempt to do things to secure my future, and keep me alive. I pay bills, shop for food, go to appointments, undergo medical testing many times a month, study for school, do school work, go to classes if I can, and try to go to my meetings. By the end of the day, I can barely walk, even with pain meds. I often pull myself into my vehicle and cry because I can not move. Here's how I suggest you learn. Get a pair of spanx, but get them two sizes too small. Force them onto your body. Then you can feel what it is like to not be able to breathe, and to hurt when you move.
Also take many ace bandages, and wrap your arms and legs and feet...but wrap them just tight enough to where you feel sharp stabbing pain when you walk or stand. Cut off the circulation just a little, not enough to hurt your limbs but enough to make them hurt. Then leave them on, doing your normal day. Wear them all day for one week, only taking them off to shower and put them back on. Then you will understand the pain I feel as the day progresses.
Also take many ace bandages, and wrap your arms and legs and feet...but wrap them just tight enough to where you feel sharp stabbing pain when you walk or stand. Cut off the circulation just a little, not enough to hurt your limbs but enough to make them hurt. Then leave them on, doing your normal day. Wear them all day for one week, only taking them off to shower and put them back on. Then you will understand the pain I feel as the day progresses.
Eventually you will not be able to walk. The pain will be so great that the minute you sit down, you will be unable to get back up to do your normal plans. Watch as you do whatever it takes to rest...desperately wanting to go to your friends, to do stuff, to take and make dinner for your family, to go to a movie...but you can't because the pain is so great, the fatigue is so immense (keep doing the benadryl too after all...I live with both).
Next add on something that causes nausea. EXTREME nausea. I dunno what is safe to take that can do it, but if you know take it. Now try to go on about your day with the bendryl in your body, the wraps and pain, and now nausea. Add a rubber band on your head, and feel the pain and pressure of the head pain. While you are at it, why not put on a mask over your mouth and nose in addition to everything else. That mimicks the hard to breathe and lack of real oxygen in your body.
Now, do all of this and then you can come at me angry for me not making it to things I have planned. Because only then will you kind of understand why I do it. I am not doing it to inconvenience you. Trust me, I would rather go to events, meet with people, go to church, go to people's homes, go to movies, go to the fair, walk, etc than deal with this crap I do every day. Maybe it is high time you all get off your high horses and start to see something as it is, not as you think it is.
And for the record, if you are angry I don't make it to something talk to ME. Don't badmouth me to others in my life. That makes YOU a jerk, not me. I ALWAYS find out. And it pisses me off. I don't do it to others. If you bitch about me to others it solves nothing. If you talk to ME you might understand what happened and why. Am I angry? Yes. I am tired of people treating people like myself like dirt. Take time to understand.
After all you will find that we understand every time something comes up with you. We understand when you are sick. Of course we understand what it is like to be shunned and gossiped about. But trust me, it is NOT about you and how we just don't wanna do it. Far from it. It hurts us more than it ever could hurt you.
After all you will find that we understand every time something comes up with you. We understand when you are sick. Of course we understand what it is like to be shunned and gossiped about. But trust me, it is NOT about you and how we just don't wanna do it. Far from it. It hurts us more than it ever could hurt you.
Monday, March 3, 2014
Update (again)
I have been horribly behind on my school work, but I am catching up slowly. Two of my three professors are allowing me to submit my work I am behind on for full credit, and that is helping. I hope the third one will allow that as well, as this is extremely difficult to juggle to start out. I am pretty used to the chemo meds now, and I am feeling better despite everything. I have caught a cold however, and I have to watch that. A cold for me can kill me due to my immune system. Back to the doctor I go tomorrow!
More lipoedema photos:
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| Lipoedema Stages 1-3 |
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| Lipoedema Legs, Typical Manifestation |
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| Buttocks and Leg Fat Deposits |
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| Lipoedmea Fat |
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| Lipoedema STages 1-3 |
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| Arm fat in lipoedema |
Friday, February 21, 2014
Sleep Study, Thyroid Fun times, and REMISSION!
So, I went inpatient for a sleep study. It was creepy being hooked up to literally 50 or so wires. I had to have a cannula in my nose, with a small microphone by my mouth, and an oxygen sensor on my finger. I have been having major problems with staying awake lately. It had gotten so bad I haven't been able to keep up with school work deadlines. I literally sleep so much, up to 20 hours a day at times, that there is not time to do the work. Thank goodness my professors have been wonderfully understanding! I am behind but I WILL catch up. Anyway, I became so depressed that I was ready to give up. After all, in my mind I may as well give up if I can't live my life anyway. Fortunately I went to the doctor to discuss these issues, and they took a thyroid test and stuck me into a sleep study. My thyroid was 4.37, which is within the normal 5.0 range...and one doctor dismissed it as I Am fine. I went to my other doctor who said the prednisone actually can artificially cause a lower TSH level on a test, so my 4.37 in reality could be more like a 7.0 or above, but is masked from the meds. The endocrinologist confirmed that, so they are getting me in for thyroid help very soon. Hypothyroidism makes you tired, cold, gain weight, your skin is dry, you lose hair, get a hoarse voice etc...all of which I have.
Anyway, during my inpatient stint Wednesday/Thursday I kept waking up. I honestly felt like I hadn't slet at all, and then they came in and woke me up. Evidently my breathing does not stop, but gets so shallow my blood oxygen level rapidly drops. It was to 80% and they decided to intervene before it went lower. They were not going to chance letting it go to see how low it does get. Anyway they stuck a CPAP machine on me, with a cannula type mask/nose prong. It was amazing. I slept all the rest of the night, about 6 hours. I had my first dreams in awhile and woke up refreshed. Now I am home again and I am back to tired all the time. I have to wait for the recheck appointment in a week to most likely get the prescription for the CPAP machine. I hope that these two things being taken care of, the thyroid and the shallow breathing at night will help me get back on track.
On a neato note, I am in remission (beginning stages) of my Microscopic Polyangiitis. They are going to start with lowering me off the prednisone first, then the methotrexate will be switched to imuran. We will see after awhile on that if I can get off the meds, and if I stay in remission or have another flare. This will be my second remission. With this comes the working on repairing the damage the illness has done to my heart, lungs, body. I will be working on Physical Therapy to strengthen my muscles which are terribly weak and prone to injury. I am goign to therapy for the lymphedema I ended up with in my legs. I am going to the weight clinic, and lung doctors to try to get my lungs and weight under control again. This disease is not actively producing the damaging proteins to my blood vessels right now, so I have to play repairman to my body now. It's rehab time, and it is going to be hard work, but I can do it.
What does the future hold? Right now a nap...then hopefully I can finish my homework. Until then I hope you all are doing good. Much love.
Anyway, during my inpatient stint Wednesday/Thursday I kept waking up. I honestly felt like I hadn't slet at all, and then they came in and woke me up. Evidently my breathing does not stop, but gets so shallow my blood oxygen level rapidly drops. It was to 80% and they decided to intervene before it went lower. They were not going to chance letting it go to see how low it does get. Anyway they stuck a CPAP machine on me, with a cannula type mask/nose prong. It was amazing. I slept all the rest of the night, about 6 hours. I had my first dreams in awhile and woke up refreshed. Now I am home again and I am back to tired all the time. I have to wait for the recheck appointment in a week to most likely get the prescription for the CPAP machine. I hope that these two things being taken care of, the thyroid and the shallow breathing at night will help me get back on track.
On a neato note, I am in remission (beginning stages) of my Microscopic Polyangiitis. They are going to start with lowering me off the prednisone first, then the methotrexate will be switched to imuran. We will see after awhile on that if I can get off the meds, and if I stay in remission or have another flare. This will be my second remission. With this comes the working on repairing the damage the illness has done to my heart, lungs, body. I will be working on Physical Therapy to strengthen my muscles which are terribly weak and prone to injury. I am goign to therapy for the lymphedema I ended up with in my legs. I am going to the weight clinic, and lung doctors to try to get my lungs and weight under control again. This disease is not actively producing the damaging proteins to my blood vessels right now, so I have to play repairman to my body now. It's rehab time, and it is going to be hard work, but I can do it.
What does the future hold? Right now a nap...then hopefully I can finish my homework. Until then I hope you all are doing good. Much love.
Friday, February 7, 2014
Behind in EVERYTHING...
Wednesday, October 30, 2013
My Bucket List
- 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
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 :)
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