"The weirdest thing that you'll ever hear anybody say I'm going to say right now, HIV saved my life. Without that diagnosis I would have been unable and ineligible to get the help that I need to survive right now. Why does somebody with that list of diseases have to go to the very bottom of their lives to get any help at all" Rob F.
Rob is a patient advocate living with type 2 diabetes, epilepsy, chronic asthma, chronic environmental allergies, high blood pressure, a skin condition called ichthyosis and is also HIV positive.
I manage all these diseases with the help of medical assistance and I’m on SNAP. I have not had health insurance throughout life until I was diagnosed with HIV. Trying to get through those years prior to having insurance was a grind. I needed health care to hold the job, I needed to hold the job to get the insurance to get the health care. I was cycling through jobs every twenty days to eighty. I couldn't really keep anything. I tried my best to grind it out but I failed no matter what I did.
The weirdest thing that you'll ever hear anybody say I'm going to say right now, HIV saved my life. Without that diagnosis I would have been unable and ineligible to get the help that I need to survive right now. Why does somebody with that list of diseases have to go to the very bottom of their lives to get any help at all? Any one of these diseases can kill me. Diabetes is the most diabolical things I ever have to deal with because it involves changing your entire life. Without a disease that had a lobby, without a disease that had a high profile, I would be dead. It shouldn't be that.
Coping with Chronic Diseases on the Public Healthcare System
Coping with those diseases on the public health care system is really difficult because a lot of those disease have specialists. Those specialists even within the same hospital system like I have, rarely talk to each other. Giving information back and forth to them is difficult and also they don't understand exactly what's going on in each other’s care. It’s like learning how to juggle six halls but it's from six different people. They all teach you how to juggle one ball back and forth. They don't understand the interplay between all six.
In my case asthma which is treated with steroids; steroids will up your blood sugar. The higher blood sugar goes lower your immune system goes. That works with HIV and makes my skin dry, also the lithiasis makes my skin dry and plate off. I'm constantly itchy. I constantly have an open wound somewhere. My skin integrity is almost never 100% and I’m possibly fighting an infection.Recently I just spent a week in hospital on IV antibiotics and was discharged to two more weeks of more antibiotics. This happens to me sometimes 2-3 times a year. It's not like optimist infection.
Unemployment, Social Security & Disability
I'm not eligible for social security disability. I’ve tried 3 times. Makes it really hard to work and keep a job because I can’t keep a job long enough to get the insurance. To get the health care I need to keep a job. If I try to work I lose my health benefits. If I work the health benefits I get may not cover everything I need to have covered. Currently I spend retail, insurance covers about $100,000 worth of prescription drugs in a year for me. My HIV meds alone are almost $2,000-$3,000 a month.
If I were to afford that myself I would have to go straight from the unemployment to Google which is not going to happen. Fixing that really is almost fixing the entire system. Employment is difficult right now for me because of the doctors' appointments I have to keep. I was actually told in a job interview that they thought their job was not a priority for me, that I would be too busy in doctor's appointments to give them 100% of my time. Which is true I do enjoy breathing and walking on dirt and not being buried under it.
So they're right but I don't think it's a really good reason to keep me out of a job. Trying to go back to school and get educated, is difficult to do monetarily, education is expensive. It rises faster than inflation. I have a hard time with attention. Sometimes balancing all these prescription drugs several of them say may cause drowsiness or dizziness and darned if they're not right. Sometimes I can sleep 10, 12, 13 hours a day.
I don't need to, I barely made it here (#Cinderblocks5) this morning but I do what I have to do. If not for love of a good woman and a good support group like here at CinderBlocks I would not make it. I feel like it's important to let people know that there are people like me out there in the world. They’re falling through the cracks. Between disability and unemployment and being eligible for things like food stamps and medical assistance. I was uninsured until I was 38. When I was 38 I was diagnosed with HIV.
Then I was worth helping, then I could get the medical assistance, then I could treat my diabetes, epilepsy and everything that came after. All of those things were being managed by me in patch-work. I knew they were there and a lot of times I just had to either ignore them or just live with the consequences. It has certainly made things harder now. I would love to have a low blood sugar, but testing supplies cost money insulin oddly is available over the counter but needles aren't; i.e you would have to find a doctor who would give you a prescription for needles and tell them “look I may not be able to come back for six months to a year please load me up”.
If I can find one who would do that, I would do that. But even then, maybe two to three doses a day, no long acting insulin. Trying to figure out how that works, kinda wrecked my life. I spent 20 years that way and if you can't get any traction, can't get anything moving, you find yourself where I’m at. You’re 45, you’re sick, you want to do more with your life but who wants a 45 year old straight white dude with no education? My time I feel like it’s passed. This story is all I have now. I will tell it to anyone that can benefit from it. This system needs to change!
Its hard to find a good support system. I don't have family that I can rely on. I was an unwanted child. I survived an abortion attempt. I was born 1/20/1973, Rode V. Wade was passed 1/23/1973. My mother told me “3 Damn days” for most of my life. I had to look it up to find out what she meant. She tried to abort me. I have a scar on my forehead, that lit up like a Christmas tree during my first MRI procedure and that's because there were metal fragments in my forehead. She tried to hang me.
I can't trust my family, there's really nobody there. I have drifted in and out of relationships, places to be, and places to go. I finally found one good woman. She from England, her name is Victoria, she just graduated nursing school and she saw the good in me nobody else could. She plucked me out of a gutter 10 years ago, took care of me, made sure I took care of myself, that I was okay, helped me through my diagnosis period. Helped me get back to the doctor. Helped me realize that it was worth it.
Four years ago, my friend Regina Holliday reached out to me and let me know that she had an advocacy group going, for patients by patients. She thought my story was worth telling. I came, I took part in a panel and something inside of me just let loose, I spilt my guts in front a room full of people. Most of my family, friends, don’t know anything about what I’m going through but it was received well. Regina kept asking me to come back and tell my story. I’ve try to find different avenues, tacts, ways that it affects me because I feel like I’m presenting in front of all of these talented wonderful people that are changing the world and I can’t even change my own life.
I’m an advocate for this patient. I wish I can be an advocate for more people in my position but I feel like I don't have much credibility of standing to help those people. That's what the world tells me. Without Cinderblocks, without these people behind me, letting me know that I’m important enough to be listened to, be heard, be interacted with I probably wouldn't have made it through the last 4-5 years.
Health Politics & Patient Advocacy
We’re in an age right now where healthcare is a big issue, drug prices are a big issue. Its a political issue now. Half of the politicians just see me as an easy vote. I vote for them or the other half will demonize me, call me a lazy and take away my benefits. Non of them address my issues. Non of them will help me, others like me or people who watching/reading this, with affordable healthcare affordable drug prices, and matching the world in efficacy of treatment.
We spend the most, over 3 trillion dollars a year in healthcare, we’re not even top 10 in results. We’re definitely not one of the happiest places to live. It's almost like justice in this country, you can have as much as you can afford. The only way that can change is for people like me, and the people here at Cinderblocks people like Regina, people like you watching/reading, to stand up and to tell your story and to tell what needs to be done in your own life and how that can be done for you. The more that we know about what's going on the more people may be motivated to try to change it.