9-25-18
Let’s start from the beginning before I get into the updates. As most of you may know by now that I am an odd duck. I have a rare disease named Multiple Hereditary Exostosss or Multiple Osteochondroma. It means I create bone tumors with cartilage caps along my long bones and in my joints. One on my spine has caused an even rarer form of seizures called Spinal Myoclonus. Those together cause chronic pain and fatigue. So when I’m not at work or the doctors, I’m at home in bed. Any tumor rapidly growing at this point has a higher rate of milagency.
Update on the disease and research. They have started a phase 1 clinical trial for growing children with MHE!!! That’s great for future generations if the trial works out. They will still have a 50% chance of passing it on, but the tumor growth should be limited. I’ll keep you updated as more info is known.
Update on my when it comes to MHE. Overall I’m a healthier person. I haven’t been “sick” with any colds or infections in over a year. I was told that my disease should be slowly down since I’m done growing, and it is slower than when I was a teenager, but I’m about to go in for my 33rd surgery. I honestly feel like I have the body of an 80 year old. My feet are constantly hurting (that should be fixed soon) but my back and hips are always aching. My jaw, which they removed the discs from 8 years ago has started popping and grinding every time I open my mouth. I’m on consertive treatment for that, which is wearing a night guard and being on a soft food/ liquid diet. Basically if it requires much chewing, I can’t eat it. I’m always tired, but I have Painsomnia which means I don’t sleep due to being in so much pain. Hopefully after this surgery, the constant pain will decrease.
Tuesday, September 25, 2018
Thursday, February 22, 2018
Join me at the ortho doc
2/22/18
As y'all may know I had ankle surgery last October to remove an osteochondroma (bone tumor) from the outside/ back part of my ankle. They also repaired/ replaced my Peroneal ligament (outside ankle) with a cool lab grown one, cut a groove in my bone that should have been there from birth, but it's me so I got a custom one for the nerve sheath to fit in, and did a PRP injection with my own blood plasma into my torn Achilles' tendon to promote healing.
Things were going great. I've had some pain in other parts of my foot and ankle due to new walkin patterns and some pain and swelling after a long day on my feet, but read above, that's no walk in the park surgery. It's all to be expected. Anyways, this past Friday one of my dogs jumps up and hits my foot causing it to jerk in the one direction the surgeon told me not to apply any forced motion. Oops. I call his nurse twice and they can't get me in because he's double booked. They tell me to go to the ER. I'm say you know that stands for "emergency room?" This isn't an emergency, I'm not dying. Well, since I've been taught if you're not vomiting, running a fever, or dying you should go to work or school. Pain won't kill you. Two hours into work I changed my mind. The pain was an 9 out of 10 and I was having hot flashes about to pass out and had tears rolling down my face. I went to the ER. I paid my $300 co-pay, the doctor refused to listen to me about what medicine I had already taken, ordered a CT scan, came back and said there are too many surgical changes to tell anything go back to your surgeon and get an MRI, but here's a prescription for 400mg ibuprofen for your sprain. Stay off your foot. The ER admin lady then brought me all my consent to treat paperwork after I signed my discharge paperwork along with an estimated bill of $3000 and asked if I wanted to pay any of that now. lol no. I just gave you $300 to give me medicine I have at home.
I saw one of my regular doctors Monday and we talked about my foot and what he could do for it. He does not want me on long term NSADS because they can damage your kidneys, cause stomach problems (which I have tons of already), cause bleeding problems, among many other things. So we went through several options and all the pros and cons of each, you know like a good doctor should do. I chose one of them (by myself not just the first one he threw at me) and if it doesn't work I have the option to go back and try the others.
I'm typing this in the parking lot of the ortho doctors office and already feeling sassy. So, I'll continue this as we go so y'all can see a typical appointment with me when something goes wrong.
I check in. They tell my my co-pay is $70. Ok fine. They also tell me I have a balance and ask if I want to pay that as well. Lol no. I tell them I already called the billing manager because of half the changes on there are wrong and I'll pay it once they correct it and mail me a new copy. I'm not paying a random amount without knowing what I'm paying for and comparing it to my EOBs. Because y'all keep trying to charge me for things insurance wrote off. That's fraud sweety. I was told to go sit down. So far so good.
I sat in the waiting room for about 15min then got called back to x-ray. The nurse said you're walking better than the last time you were here (3 months ago.) How does it feel? My response, "hurts like hell but thanks for asking." I take my x-rays. She asks if I hurt it again and I said yes and she said oh yeah you called Friday. We just been so busy since he's going out of town next week. "Priorities." Yall, my mood has gone from sassy to sour.
I'm in the room waiting for the doctor. It's been ten min. I have recognized that I have an attitude problem today. I text my mom to let her know. She said "me too." Maybe it's the pain, maybe it's the lack of proper healthcare, maybe it's because I'm on my 3rd day without caffeine, or that I've been reading too many politics online, but I'm going to meditate and try to fix it before he walks in the door. He comes in and examines my foot and ankle. His diagnoses is partial achillies tendon tear or really bad strain (no test will show since I just had surgery.) And I popped a stitch where I had a ligament graft on the outside on my ankle. He's then like it's going to hurt a lot for a few weeks but you'll be fine. I'm sitting here thinking don't tell me how I'll feel about being in pain for a few weeks. My next question is "well what can we do until then because I don't find that acceptable." Yall this doctor gave me a heel life to put in my walking boot. I'm like "oh thanks, that will solve all my problems." And he comes back and says, "three weeks of pain then we will do something." Ok you sadist.
Y'all I'm going home to nap and eat a snack so my attitude will improve before work.
As y'all may know I had ankle surgery last October to remove an osteochondroma (bone tumor) from the outside/ back part of my ankle. They also repaired/ replaced my Peroneal ligament (outside ankle) with a cool lab grown one, cut a groove in my bone that should have been there from birth, but it's me so I got a custom one for the nerve sheath to fit in, and did a PRP injection with my own blood plasma into my torn Achilles' tendon to promote healing.
Things were going great. I've had some pain in other parts of my foot and ankle due to new walkin patterns and some pain and swelling after a long day on my feet, but read above, that's no walk in the park surgery. It's all to be expected. Anyways, this past Friday one of my dogs jumps up and hits my foot causing it to jerk in the one direction the surgeon told me not to apply any forced motion. Oops. I call his nurse twice and they can't get me in because he's double booked. They tell me to go to the ER. I'm say you know that stands for "emergency room?" This isn't an emergency, I'm not dying. Well, since I've been taught if you're not vomiting, running a fever, or dying you should go to work or school. Pain won't kill you. Two hours into work I changed my mind. The pain was an 9 out of 10 and I was having hot flashes about to pass out and had tears rolling down my face. I went to the ER. I paid my $300 co-pay, the doctor refused to listen to me about what medicine I had already taken, ordered a CT scan, came back and said there are too many surgical changes to tell anything go back to your surgeon and get an MRI, but here's a prescription for 400mg ibuprofen for your sprain. Stay off your foot. The ER admin lady then brought me all my consent to treat paperwork after I signed my discharge paperwork along with an estimated bill of $3000 and asked if I wanted to pay any of that now. lol no. I just gave you $300 to give me medicine I have at home.
I saw one of my regular doctors Monday and we talked about my foot and what he could do for it. He does not want me on long term NSADS because they can damage your kidneys, cause stomach problems (which I have tons of already), cause bleeding problems, among many other things. So we went through several options and all the pros and cons of each, you know like a good doctor should do. I chose one of them (by myself not just the first one he threw at me) and if it doesn't work I have the option to go back and try the others.
I'm typing this in the parking lot of the ortho doctors office and already feeling sassy. So, I'll continue this as we go so y'all can see a typical appointment with me when something goes wrong.
I check in. They tell my my co-pay is $70. Ok fine. They also tell me I have a balance and ask if I want to pay that as well. Lol no. I tell them I already called the billing manager because of half the changes on there are wrong and I'll pay it once they correct it and mail me a new copy. I'm not paying a random amount without knowing what I'm paying for and comparing it to my EOBs. Because y'all keep trying to charge me for things insurance wrote off. That's fraud sweety. I was told to go sit down. So far so good.
I sat in the waiting room for about 15min then got called back to x-ray. The nurse said you're walking better than the last time you were here (3 months ago.) How does it feel? My response, "hurts like hell but thanks for asking." I take my x-rays. She asks if I hurt it again and I said yes and she said oh yeah you called Friday. We just been so busy since he's going out of town next week. "Priorities." Yall, my mood has gone from sassy to sour.
I'm in the room waiting for the doctor. It's been ten min. I have recognized that I have an attitude problem today. I text my mom to let her know. She said "me too." Maybe it's the pain, maybe it's the lack of proper healthcare, maybe it's because I'm on my 3rd day without caffeine, or that I've been reading too many politics online, but I'm going to meditate and try to fix it before he walks in the door. He comes in and examines my foot and ankle. His diagnoses is partial achillies tendon tear or really bad strain (no test will show since I just had surgery.) And I popped a stitch where I had a ligament graft on the outside on my ankle. He's then like it's going to hurt a lot for a few weeks but you'll be fine. I'm sitting here thinking don't tell me how I'll feel about being in pain for a few weeks. My next question is "well what can we do until then because I don't find that acceptable." Yall this doctor gave me a heel life to put in my walking boot. I'm like "oh thanks, that will solve all my problems." And he comes back and says, "three weeks of pain then we will do something." Ok you sadist.
Y'all I'm going home to nap and eat a snack so my attitude will improve before work.
Monday, January 15, 2018
The Cost of Chronic Illnesses
1/14/18
So one thing people don't often like to speak about is their financial situation. It just makes everyone in the room uncomfortable. It's time to talk about how expensive healthcare is in America. I've mentioned once or twice before that some surgeries can cost up to $60,000 easily. I've calculated the yearly cost of having my period before. This time I'm just going to go over December 2017s medical bills. I did have surgery back in late October, so I've had a couple necessary visits to the doctor and physical therapy.
First, I my dentist requires me to pay all in full at each visit. Since I've had the disc removed from my jaws, I can not have all my dental work done at one time. After 4 visits in 1 month, all requiring antibiotics (one must have antibiotics for any dental work inculuding cleanings after ligament grafts) I have spent a total of $950 for the month.
Second my ankle, on top of paying a $35 co-pay each time I walk, or limp, into the door several times a week for a month, I receive two different bills in the mail totaling to be $1200. Both due in full within 30 days of receiving the bill. I have already paid them $420 in co-pays.
Third pharmacy- I've had to get several new medications for an infection in my ankle and the doctor can never write an old-school generic one (the cream was $130 after a discount coupon.) I also have my normal monthly medications. I get up to the counter, and the pharmacy tech asks "are you aware of the price of your medication for IBS?" She's new, and I'm aware that's it's a ridiculous price. "After a coupon it's $337. And your total for the day is $492." I just laugh a bit because at this point, I'm on first name basis with the pharmacist so I can't cry. She goes on to ask "would you like to put any of it back?" Lord help me and her. It's one IBS medication and the rest is for epilepsy. It's not like I got cookies I can't afford so I can just put them back on the shelf. It's me either spending nearly $500 to not have a seizure and have my license revoked and to not be in agonizing stomach pain. So I'll just pay for it and figure it out later.
Fourth- Insurance. It seems like I paying the non-insured person price. But I do in-fact have medical insurance. I believe $160 is taken out of my check monthly (possibly more.) If y'all saw the price on the bills before insurance adjustments or the price on the pharmacy paper where it says your insurance saves you....you would be in awe. It saves me nearly $10,000 each month. So we are thinking "great so you should have almost met your deductible and out of pocket." Sadly, that was all for December and my new deductible and out of pocket started over Jan 1.
For anyone keeping track that total is $3352 for my health with insurance and I'm still waiting on one more bill from a doctor I saw several weeks ago. On top of these bills I have a mortgage to pay, utilities, and I like to eat at least one meal a day. Everything else money wise is just non-essential right now, which fits well into my minamalist lifestyle.
So one thing people don't often like to speak about is their financial situation. It just makes everyone in the room uncomfortable. It's time to talk about how expensive healthcare is in America. I've mentioned once or twice before that some surgeries can cost up to $60,000 easily. I've calculated the yearly cost of having my period before. This time I'm just going to go over December 2017s medical bills. I did have surgery back in late October, so I've had a couple necessary visits to the doctor and physical therapy.
First, I my dentist requires me to pay all in full at each visit. Since I've had the disc removed from my jaws, I can not have all my dental work done at one time. After 4 visits in 1 month, all requiring antibiotics (one must have antibiotics for any dental work inculuding cleanings after ligament grafts) I have spent a total of $950 for the month.
Second my ankle, on top of paying a $35 co-pay each time I walk, or limp, into the door several times a week for a month, I receive two different bills in the mail totaling to be $1200. Both due in full within 30 days of receiving the bill. I have already paid them $420 in co-pays.
Third pharmacy- I've had to get several new medications for an infection in my ankle and the doctor can never write an old-school generic one (the cream was $130 after a discount coupon.) I also have my normal monthly medications. I get up to the counter, and the pharmacy tech asks "are you aware of the price of your medication for IBS?" She's new, and I'm aware that's it's a ridiculous price. "After a coupon it's $337. And your total for the day is $492." I just laugh a bit because at this point, I'm on first name basis with the pharmacist so I can't cry. She goes on to ask "would you like to put any of it back?" Lord help me and her. It's one IBS medication and the rest is for epilepsy. It's not like I got cookies I can't afford so I can just put them back on the shelf. It's me either spending nearly $500 to not have a seizure and have my license revoked and to not be in agonizing stomach pain. So I'll just pay for it and figure it out later.
Fourth- Insurance. It seems like I paying the non-insured person price. But I do in-fact have medical insurance. I believe $160 is taken out of my check monthly (possibly more.) If y'all saw the price on the bills before insurance adjustments or the price on the pharmacy paper where it says your insurance saves you....you would be in awe. It saves me nearly $10,000 each month. So we are thinking "great so you should have almost met your deductible and out of pocket." Sadly, that was all for December and my new deductible and out of pocket started over Jan 1.
For anyone keeping track that total is $3352 for my health with insurance and I'm still waiting on one more bill from a doctor I saw several weeks ago. On top of these bills I have a mortgage to pay, utilities, and I like to eat at least one meal a day. Everything else money wise is just non-essential right now, which fits well into my minamalist lifestyle.
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