veague heath update/info ensues

i just thought that since i post about my illness so much i ought to write about what parts effect me the most and what i have to begin with. im not going to go into dates of diagnosis, times and treatments too much, because this is a vastly general update. i have SLE (systemic Lupus erythematosus) this causes my antibodies to attack healthy cells causing me RA (rheumatoid Arthritis), skin rashes, scaring in my lungs (pulmonary fibrosis) kidney and liver issues etc. it can also increase my risk for cancer. interestingly enough the treatment for this disease is chemo drugs and imunosuppressants. i also was fairly recently diagnosed with Ehlers-Danlos syndrome which is a genetic condition causing my body to produce improperly made collagen which makes up most of the body systems. this causes my stomach and lower intestines to be parilized (gastroparesis), hypermobile joints, and random dislocations, dysautonomia (vertigo, low BP, high heart rate, fainting, speech problems) herat problems (arrhythmias, mitral valve prolapse) and brain problemsa (migraines and seizures) with all of these problems i take over 20 pills daily plus other treatments and injections. plus i use a cane or a wheelchair for long distances because of my joint hypermobility and balance issues. i have a tumblr blog at hands-full-of-hospital-bands.tumblr.com where i write daily about my life with disability and illness.

a letter of complaint to doctor Gajir

I am lodging a formal complaint to Elliot B. Davidson, MD, FAAFP, Director Of akron generals center for family medicine, but i am also CCing the resident who saw me the day of the incident, and the patient liaison for out patient services at akron general medical center. Hello, my name is Allyson Sutphin. I am a patient of doctor Ghada Ibrahim at Center for Family Medicine, as well as a rheumatology, pulmonology, and neurology patient at this hospital location. I am writing you today to lodge a formal complaint about an incident that happened at the CFM facility this week. Here is a summary of the situation. Wednesday morning I woke up with a high fever, vomiting, and blood in my urine. Because I have a preexisting condition, I called CFM and asked for a rushed appointment. The nurse told me that they could not get me in that day and recommended that I been seen in the emergency department. I was seen in the ER at akron general at 12:00am on wednesday night / thursday morning. While iIwas there, I received IV fluids as well as pain and nausea medication. They drew blood and collected a urine sample. They diagnosed me with a bladder infection and idiopathic vomiting, and set up a rushed appointment with CFM. I was discharged from the ER and went to my CFM appointment that was scheduled for 11:30am that day (the day that I was discharged from the emergency room). I got to my appointment 10 minutes early, but they did not call me back until an hour after my appointment was scheduled. once i got back into a room, they took another urine sample, and started another IV to give fluid replacement. Since my doctor was unable to see me that day, I saw Dr. Gajir. He spoke with me and decided that antibiotics should not be prescribed since I was already having stomach issues and antibiotics can add to that, and sent me home with a 102.4 fever with the instructions to call back the next day if things had not cleared up, and he would call for a direct admission to the hospital. The next day my fever and vomiting were persistent so i called CFM and asked the nurse to pass the information on to the doctor. i waited 4 hours and still had not gotten a call back so i made another phone call to remind the nurse to process my request. she told me that i should go back to the emergency department, and that they would send over paperwork to get me taken back STAT and they would instruct the ER doctor to admit me to the hospital. some direct quotes from this conversation are, "They will get you back right away so you won't be waiting around," and, "There is no chance that they won't admit you to the hospital because we have requested it." however, when i got to the emergency department nothing had been sent over and i was instructed to wait in the ER waiting room. i was very ill at that time so i had s friend call CFM on behalf of me, and he was told by a different nurse or doctor that we had been given misinformation, that i had the option to be evaluated, and a decision would be made based on lab tests. I was lied to and mislead by the nurse on call at the center for family medicine, which lead to two unnecessary ER visits, racking up bills for lab tests and results. i would very much like to speak to Ghada Ibrahim (my physician) and a patient liaison who can hear my case and advocate for me, because i do not feel that i can trust the care givers that i have been assigned too.

I am a grown up

To me, being an adult doesn't always mean having a degree and working a full time job. Being an adult is not the same for everyone because some people can't do all of those things. To me, the meaning of adulthood is really only about one thing, priorities. Sure, I could get a job and take classes at the university, but by doing that I'd be letting myself slip away. For someone like me, who has serious chronic illness, my life is about taking care of my body, doing what I can, and spending time with the people I love. Yes I could pick up a full load of classes and go for my dream degree. But then I'd have to miss my cytoxan infusions that put me down for the count hugging my toilet bowl for a week. So instead of doing that, I choose to knit hats for charity and read classic novels because those are things I can do in my situation. (I digress) to me, being a grown up is taking care of the most pressing issue at any given time. And for me, that is my illness. It's a matter of importance. If I blow off my health to get a degree right now, chances are I won't be ali e to use that facet piece of paper.

Something I hear a a lot is "but don't you feel like your life isn't going anywhere" which is not only offensive, but just plan not true. Im Taking care of myself by  taking it easy until i am well. I suggest you look at your priority a before you question mine 

benadryl, sperts of joy and a very rant-like post

one of the things about EDS, is sometimes my immune system is hyper reactive, and because i take imunosupresents to treat systemic lupus it can be free to attack itself as much as it wants. today my body decided it wanted to stop producing tears (Sjogren syndrome) so i have bee using eye drops every hour almost and im on my third benadryl. all in all i feel okay today aside from normal ailments. i've been taking advantage of this "healthy day" to make Dr and PT/OT appointments and responding to Emails, and taking breaks to eat and do breathing treatments. throughout the day i have been having sort sperts of time (a few seconds) where i feel nothing but joy. this is something that happens to me on occasion, my psychiatrist says its minor serotonin syndrome from high dose antidepressants (300mg of Effexor). but i think its just my mind giving me a reason to keep going in tough moments where everything seems to suck. there are very few things that seem worth continuing for, on days that are high in pain or when im stuck hooked up to machines immobilize by IVs and catheters. so these moments of happiness are something that i choose to hold on to. when i got my cytoxan infusion last week, the nurse who was bandaging my PICC line said the thing that i have heard from far too many doctors and nurses "oh honey, you have been through so much." this is soothing that we joke about a lot in the online community of people with chronic disease, people who aren't sick think that confirming that us being sick does, in fact, really sick, is supposed to be comforting. but the truth is, id much rather you say "i really like your art" or "where did you get your shirt?" treat me like a human. not a pity case. i want to be reminded that im not less then you, im not inferior to the population of able bodied people.

Acute Clinical MicroSleep and Other Atypical Anatomical Functions

basically this is a chronic response that your body does when it is in too much pain to preform its functions. it is often misdiagnosed as chronic fatigue syndrome or narcolepsy. this has been happening to me be teen every hour to 30 minutes. ill suddenly become exhausted and fall into REM for 2-3 minutes and wake up and be awake for an hour or so. this is great for when i don't feel well but its happening all night to. one of the interesting things about being an anomaly when it comes to the health of a 20 year old, is learning about atypical anatomical functions (its a mouth full, right?) like, when a non-EDS patient would dislocate their knee you would expect extreme pain and difficulty resetting the joint. however, since i have EDS, i have a mixed connected tissue disorder allowing me to pop my joints in and out (not that it doesn't hurt, it does but my body can't prevent it from happening) another example of strange bodily function is thinking about having Lupus. my immune system attacks its own body and cells unless i take a daily chemotherapy drug. i sometimes wonder why it is that most people who are diagnosed with a chronic illness usually have more then one. like for insistence, my friend Leah has ehlers-danlos syndrom, POTS, GERD, and MVP. while some of them are related, some are not so much. when i was first diagnosed with Lupus, i was also diagnosed with POTS (Postural Orthostatic Tachycardia Syndrom) and over the next year or so, quite a few others (diagnosis story was in the previous post) is it because our body's are made more susceptible once you have one illness? is it a flaw in anatomy when you are born? i wish there were a foundation for the study of Chronic conditions.

if my life were a novel this would be the summery:

My name is Allyson Marie Clare Sutphin, im 20 years old and live in an apartment with my boyfriend Matt and three cats (Lilly, and 2 of her kittens Goat, because he has a goatee and Erebos, named after a magic card. I plan to study Sociology and Philosophy with an angle in publication because i am a passionate writer, but Matt and i also want to have a family at some point. But i can’t start on school until my health is stable Growing up, i struggled with OCD and anxiety from a very young age. i started anti-anxiety medication when i was 7 and therapy when i was nearly 5. when i was 9 my mom (she was my best friend, biggest anxiety helper, and biggest inspiration) was diagnosed with breast cancer. in the summer of 2004 she wen’t into remission, but the following winter she relapsed and quickly became sicker and sicker. we moved from Cincinnati to Hudson Ohio in the middle of my 5th grade year to be near the cleavlend clinic (for my Mom) and to live near my grandparents (for all of us) about a year later, my moms Cancer had spread to her blood, her bone marrow and her lungs, so we moved her into hospice when she decided the treatments weren’t doing any good. a month later she passed away with a relaxed smile on her face. from here, things get a little shaky. my depression became unmanageable, so my dad sent me to a ‘wilderness program’ where i spent 3 month camping on the Appalachian trail. it was hard, it was beautiful, it was rewarding. it’s something i will never be able to do again, but im glad i did it. after that, i went to a residential treatment center that was formatted like a relaxed boarding school. i completed my freshmen and sophomore years here, high in the mountains of bonners ferry Idaho. i made a lot of friends here, a lot of which i still keep in contact with! while i was there, my father got remarried. while i was at the boarding school, i hd a specialized trauma therapist, who, upon listening to me labeled my father as physically and verbally abusive. so he had to go through classes and procedures before i was aloud to return home to him. while i was there i was diagnosed with AvPD, Bulimia, Major Depressive Disorder, and Multiple phobic disorder (no longer diagnostic criteria) i did go back home and finish my junior and senior year at Hudson high school, where i had my first of many suicide attempts and a lot of hospitalizations (i was diagnosed with my first chronic illness besides asthma, Epilepsy and MVP, POTS) i began to get sicker physically. i had always had epilepsy, scoliosis, asthma, and mitral valve prolapse, but coughing up blood and losing 30 lbs was not a symptom of these. nothing helpful was diagnosed except for rheumatoid arthritis and pyloric stenosis. At the end of my senior year, i had to regularly fight (physically and verbally) with my father to protect my brothers, and new step-sisters. when school finished and i graduated my Dad kicked me out and i lived on the streets of akron for almost 4 months ((i wont talk much about wheat happened in that time because thats where a lot of my PTSD comes from)) eventually i got stable in a place to live and met Matt, we moved in together. my life has really never been smooth or easy, but i wouldn’t change any of it because i think it really help form me to be who i am today. after i turned 19, i ended up in hospital for nearly a month and i was diagnosed with SLE (Systemic lupus erythematosus) a condition that would change the functionality and meaning of my life. i was later diagnosed with a few other debilitating conditions including EDS3, Vitamin D and Magnesium deficiencies, Gastroesophageal reflux disease (GERD), PTSD, and schizophrenia) i will keep believing my life is worth fighting for, for as long as i can. encouragement is always helpful.

a diagnosis can('t) define my life

As a lupus patient , i can't spend a lot of time in the sun because it causes my antinuclear antibodies to act up. Essentially, Lupus is a disease where your body becomes allergic to itself, causing chronic organ rejection and inflammation of my organs, skin, muscles, and arteries, and being in the sun makes the body think there is an intruder. if i spend 30 minutes to an hour in the sun i will end up spending a few days with stomach flu symptoms and respiratory decline. People consider Lupus an "invisible illness" because it is hard to tell if you have an autoimmune disease by looking at somebody. often times i will have a red rash that spreads across my nose and over my cheeks. it burns and itches like poison ivy. When i was a kid i loved spending time outside, there were specific tress in the woods behind my childhood home that i would sit and read books for hours. being inside made me feel trapped, it felt unnatural. now that summer is my immune systems enemy, i have to find peace elsewhere. I've hung fairy lights, pictures, posters, and a collage of photos in my bedroom. i have dark curtains over my window to block the light, but i open the window for fresh air. its fall, and there is mostly cloudy weather, so going outside is not a danger as much, but with the chill in the air my joints are swelling and my sinuses are pounding with pain. My boyfriend Matt has been pushing me to the library in my wheel chair to help me get a change of scenery. Having an illness certainly changed my life, but it hasn't made it worse. as i have written before, its hard to find peace when your happy place is unaccessible. learning to be a person of hope after a big change like becoming ill is difficult, but i think if i hold to my passions and values it will not be hard to remain the same person i was, just with different challenges.