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.