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.
Thursday, December 21, 2017
Ankle Surgery and Other Things
12/21/17
This post was requested by someone who used to read my posts often. My latest adventures have been with my ankle. It all started over the summer. I woke up one morning with horrible pain in my Achilles' tendon. It hurt to even touch a blanket. I go to one of those walk in (should be limp in) sports clinics. They give me a walking boot and some steroids for 2 weeks. No improvement. They do an MRI and they say I have tendinitis in my Achilles and peroneal ligament (runs on side of ankle. ) I get sent to PT for 3 weeks for what reason? I don't know. Because rest would have been the appropriate treatment. I go back and the doctor kicks me out of his practice after I tell him he's an idiot and I'm now in more pain.
I go to a new doctor (3 weeks later). He reads the MRI himself and examines my foot. Turns out I have an osteochondroma on my ankle causing all my pain. He schedules surgery immediately and calls the first doctor to tell him he was wrong. I have surgery the day before my birthday. The nerve block they gave me, while awake, didn't take. So I get put to sleep and have the surgery done. Turns out my Achilles is partially torn, they repair that and clean up scar tissue from surgery I had 10 years ago. They removed the tumor and shaved down the bone attached to it the reduce the chances of it growth back. For the peroneal ligament they repaired it by grafting on a new ligament. When I woke up I had 4 thoughts in my head: was the tumor benign or did they have to amputate, I have to pee, I'm about to throw up, and man my leg hurts.
I go home and uneasily rest for about 3 days then I return to work against doctors orders, and boy was that a painful mistake. I felt like hell for weeks. I get called derogatory names by both customers and co-workers who have no idea what I go through but I smile and keep working. I have my cast changed 3 times and my stitches removed before being put in a boot again. I start PT again 3 times a week and that's still going on.
I went back to the doctor a little over a week ago to find I have an infection and my scar isn't healing correctly. I now have to take a high dose of a high powered antibiotic twice a day for several weeks and I have to rub a cream that burns like hell on the scar that removes necrotic skin while promoting new skin growth. Y'all, this makes me sicker than the infection itself. I throw up all throughout the night and several times each day. I can't stop the meds because if the infection hits my new ligament my body can reject it and back to surgery I go.
In the mean time, chronic vomiting (and from my past posts y'all know I have a problem with this) causes oral problems. I have been at the dentist 3 times in 2 weeks for a total of 7 hours getting cavities filled and my teeth cleaned and flouried treatments. Due to having the discs removed from my jaw 5 years ago, my jaw has been clicking, swollen, and in extreme pain. I have at least one more visit scheduled for the dentist.
Needless to say these last few months, especially weeks, have been rough. My pain is at a constant 7-8 on the pain scale. I get home from work and just can no longer work and have to use my wheelchair. I'm tired of throwing-up daily with my anti-nausea meds no longer working. Then to top it all off, I get told to step up my appearances but no amount of makeup can cover up the fact that I feel like death.
I'll try better to keep y'all updated. I didn't realize until recently that my daily struggles of living with rare diseases help y'all understand not only what I'm going through but what others may be goin through and trying to cover up.
This post was requested by someone who used to read my posts often. My latest adventures have been with my ankle. It all started over the summer. I woke up one morning with horrible pain in my Achilles' tendon. It hurt to even touch a blanket. I go to one of those walk in (should be limp in) sports clinics. They give me a walking boot and some steroids for 2 weeks. No improvement. They do an MRI and they say I have tendinitis in my Achilles and peroneal ligament (runs on side of ankle. ) I get sent to PT for 3 weeks for what reason? I don't know. Because rest would have been the appropriate treatment. I go back and the doctor kicks me out of his practice after I tell him he's an idiot and I'm now in more pain.
I go to a new doctor (3 weeks later). He reads the MRI himself and examines my foot. Turns out I have an osteochondroma on my ankle causing all my pain. He schedules surgery immediately and calls the first doctor to tell him he was wrong. I have surgery the day before my birthday. The nerve block they gave me, while awake, didn't take. So I get put to sleep and have the surgery done. Turns out my Achilles is partially torn, they repair that and clean up scar tissue from surgery I had 10 years ago. They removed the tumor and shaved down the bone attached to it the reduce the chances of it growth back. For the peroneal ligament they repaired it by grafting on a new ligament. When I woke up I had 4 thoughts in my head: was the tumor benign or did they have to amputate, I have to pee, I'm about to throw up, and man my leg hurts.
I go home and uneasily rest for about 3 days then I return to work against doctors orders, and boy was that a painful mistake. I felt like hell for weeks. I get called derogatory names by both customers and co-workers who have no idea what I go through but I smile and keep working. I have my cast changed 3 times and my stitches removed before being put in a boot again. I start PT again 3 times a week and that's still going on.
I went back to the doctor a little over a week ago to find I have an infection and my scar isn't healing correctly. I now have to take a high dose of a high powered antibiotic twice a day for several weeks and I have to rub a cream that burns like hell on the scar that removes necrotic skin while promoting new skin growth. Y'all, this makes me sicker than the infection itself. I throw up all throughout the night and several times each day. I can't stop the meds because if the infection hits my new ligament my body can reject it and back to surgery I go.
In the mean time, chronic vomiting (and from my past posts y'all know I have a problem with this) causes oral problems. I have been at the dentist 3 times in 2 weeks for a total of 7 hours getting cavities filled and my teeth cleaned and flouried treatments. Due to having the discs removed from my jaw 5 years ago, my jaw has been clicking, swollen, and in extreme pain. I have at least one more visit scheduled for the dentist.
Needless to say these last few months, especially weeks, have been rough. My pain is at a constant 7-8 on the pain scale. I get home from work and just can no longer work and have to use my wheelchair. I'm tired of throwing-up daily with my anti-nausea meds no longer working. Then to top it all off, I get told to step up my appearances but no amount of makeup can cover up the fact that I feel like death.
I'll try better to keep y'all updated. I didn't realize until recently that my daily struggles of living with rare diseases help y'all understand not only what I'm going through but what others may be goin through and trying to cover up.
Tuesday, March 14, 2017
sometimes you just give up
3/14/2017
I was out of town over the past week and almost daily I was receiving phone calls from doctors, nurses, pre-op, etc.
Here's an over-view of what went down.
1. My orthopedic oncologist scheduled a bone scan for me to have Monday the 13th. This is a 4-6 test where they inject you with radioactive dye, you must hold still, and they scan your whole body. If any part "lights up" they have to go back over that part from all different angles. Why do I have to do this? This test will tell them basically if I have tumors growing and if I do at this age, they are thought to be malignant. Now what happens if it is malignant? I'm sure you are thinking they have made some great medical advances? Think again! For this disease and osteoscarcoma, they just chop off the limb the tumor is connected to so it will not grow back or spread, like you're a 1862 gangrene patient. Who is to say what limb is worth losing over an agonizing death? No one. It is one of those personal decision things. After walking around in the rain looking for the entrance to the hospital (due to the main one being moved for construction and all doctors and nurses telling me I couldn't enter and to walk to the other side) I said, "it's just not worth these 4-6 hours and my money for this test to then make that decision of life or limb."
2. Same doctor wants me to also do physical therapy for my shoulder blade for a tumor pressing into my lungs just so insurance will approve an MRI of that area. For those of you who don't know, physical therapy does not treat tumors, it makes the pain and swelling worse. It also is counter productive for costs. I have to go 3 times a week for 6 weeks to have 1 MRI at $2500, then have the surgery just to go back to therapy. Once I run out of therapy visits, I have to pay 100% of it all over again. So, I determined I have had this pain for 3 years, whats another couple years.
3. The day before I left, I had a blood test done by my GI specialist who I have been hanging out with almost every other week now. If I don't go to see him, he makes it a point to personally call me. He made another phone call, and asked me to cut my trip short and I told him that I couldn't, so he asked me to come in first thing Monday morning. Me being me, I asked "How about Tuesday afternoon?" They need to retest my blood, it either came out all wrong from the lab, or something is wrong with me which is what I have been trying to tell him for the past year. Either way, we are both very excited to find out. It might be caused by my bones and if that's the case, I need a new orthopedic oncologist. I have been to Mayo Clinic, Vanderbilt, Kentucky, and Memphis.
4. Surgery 33ish is coming up Friday. I lost count after 30. I have been on the phone non-stop with the surgeon, the pre-op nurses, and the anesthesiologist (please let me take this time to note that I asked to be awake the whole time) and we have determined that despite having a couple of bone issues, I am healthy enough to undergo surgery.
I was out of town over the past week and almost daily I was receiving phone calls from doctors, nurses, pre-op, etc.
Here's an over-view of what went down.
1. My orthopedic oncologist scheduled a bone scan for me to have Monday the 13th. This is a 4-6 test where they inject you with radioactive dye, you must hold still, and they scan your whole body. If any part "lights up" they have to go back over that part from all different angles. Why do I have to do this? This test will tell them basically if I have tumors growing and if I do at this age, they are thought to be malignant. Now what happens if it is malignant? I'm sure you are thinking they have made some great medical advances? Think again! For this disease and osteoscarcoma, they just chop off the limb the tumor is connected to so it will not grow back or spread, like you're a 1862 gangrene patient. Who is to say what limb is worth losing over an agonizing death? No one. It is one of those personal decision things. After walking around in the rain looking for the entrance to the hospital (due to the main one being moved for construction and all doctors and nurses telling me I couldn't enter and to walk to the other side) I said, "it's just not worth these 4-6 hours and my money for this test to then make that decision of life or limb."
2. Same doctor wants me to also do physical therapy for my shoulder blade for a tumor pressing into my lungs just so insurance will approve an MRI of that area. For those of you who don't know, physical therapy does not treat tumors, it makes the pain and swelling worse. It also is counter productive for costs. I have to go 3 times a week for 6 weeks to have 1 MRI at $2500, then have the surgery just to go back to therapy. Once I run out of therapy visits, I have to pay 100% of it all over again. So, I determined I have had this pain for 3 years, whats another couple years.
3. The day before I left, I had a blood test done by my GI specialist who I have been hanging out with almost every other week now. If I don't go to see him, he makes it a point to personally call me. He made another phone call, and asked me to cut my trip short and I told him that I couldn't, so he asked me to come in first thing Monday morning. Me being me, I asked "How about Tuesday afternoon?" They need to retest my blood, it either came out all wrong from the lab, or something is wrong with me which is what I have been trying to tell him for the past year. Either way, we are both very excited to find out. It might be caused by my bones and if that's the case, I need a new orthopedic oncologist. I have been to Mayo Clinic, Vanderbilt, Kentucky, and Memphis.
4. Surgery 33ish is coming up Friday. I lost count after 30. I have been on the phone non-stop with the surgeon, the pre-op nurses, and the anesthesiologist (please let me take this time to note that I asked to be awake the whole time) and we have determined that despite having a couple of bone issues, I am healthy enough to undergo surgery.
Wednesday, January 11, 2017
I hate my uterus
1/11/2017
For months now, I have had immense stomach pain with round the clock nausea and vomiting. I have it the week before, during, and after my period with a one week break in between. I have changed all my eating habits and have been taking three different medications for nausea and vomiting. Biopsies from my endoscopy and colonoscopy show nothing. Absolutely nothing.
Men may want to stop reading now, or keep reading and welcome to the life of someone with a uterus. My period arrives, I knew it was coming for 10 days due to vomiting, ovarian pain, bloating, and more. I prepare my day for work with a purse full of 8 tampons (one per hour at work), pads, and pantyliners. By noon, I have bled through everything and ruined yet another set of clothes. I have four hours left at work and need to be able to pay for my insurance and hospital and doctors bills that I can not go home and stay home every week of my period. So, I go to the store and buy another slew of feminine hygiene products, and continue to take all my stomach medication and various OTC pain relievers for any hint of relief, all while hoping no one notices the pool of blood and blood clots I am sitting in until the day ends. Each morning, I have to change the sheets on my bed due to excessive bleeding and try not to pass out from dizziness. I am in a constant state of wanting to cry and cursing my reproductive system that I do not need at all. It just makes my life hell.
I will momentarily end this rant, but it will not truly end until my problem is fixed, not just held over by heating pads and medications.
For months now, I have had immense stomach pain with round the clock nausea and vomiting. I have it the week before, during, and after my period with a one week break in between. I have changed all my eating habits and have been taking three different medications for nausea and vomiting. Biopsies from my endoscopy and colonoscopy show nothing. Absolutely nothing.
Men may want to stop reading now, or keep reading and welcome to the life of someone with a uterus. My period arrives, I knew it was coming for 10 days due to vomiting, ovarian pain, bloating, and more. I prepare my day for work with a purse full of 8 tampons (one per hour at work), pads, and pantyliners. By noon, I have bled through everything and ruined yet another set of clothes. I have four hours left at work and need to be able to pay for my insurance and hospital and doctors bills that I can not go home and stay home every week of my period. So, I go to the store and buy another slew of feminine hygiene products, and continue to take all my stomach medication and various OTC pain relievers for any hint of relief, all while hoping no one notices the pool of blood and blood clots I am sitting in until the day ends. Each morning, I have to change the sheets on my bed due to excessive bleeding and try not to pass out from dizziness. I am in a constant state of wanting to cry and cursing my reproductive system that I do not need at all. It just makes my life hell.
I will momentarily end this rant, but it will not truly end until my problem is fixed, not just held over by heating pads and medications.
Wednesday, October 26, 2016
New adjustments: the good, the bad, and the ugly crying.
10/26/2016
In case someone didn't read my last post. I went to get tested for food allergies and the results were not in my favor. Read that post for all the details. Adjusting to the soy free and yellow dye free life has been the most challenging out of all the foods, and I thought the tomatoes would be a problem, but when you have nothing to put them on they don't become a problem. I'm just going to break this down in to different categories of struggles and changes.
Grocery shopping:
I now have to read all the labels. My grocery trips now take over two hours for less than half a basket of food. I shop at a small town store that has half of an organic isle that everyone avoids, so I am all alone for most of these two hours. I break out into song "im all alone in the organic isle..." and the grocery employee asks if he can help me with anything. I say, "Yes." We just stare at each other for an awkward minute and he asks, "well....?" to which I reply, "I'm looking for food." He gives me that no shit look. I then list off everything I can't eat and he leaves basically saying I'm SOL. Continuing on through the store I realize that I can no longer eat chocolate. What kind of life am I living? I check out pay my $80 for my 10 or so items and leave broke, hungry, and sad.
Eating at restaurants:
Well I can't do that anymore. The only thing I can get anymore is a salad without tomatoes, lemons or their juice spritzed on the salad to keep it fresh, no cheese, blah blah. They might as well feed me a head of lettuce and I'm not paying $8 for a $1 item.
Eating at home:
Eating at home is fine. I eat a lot of meat, eggs, fruits, and vegetables. I can still eat Sweedish Fish. (that is red candy for those of you like my mom that didn't know), but I can't eat that Sweedish Fish Oreos. But if I want bread, pasta, pancakes, cake, you know all those delicious carbs? I have to make them completely from scratch like the true baker I am. It shouldn't be a problem since I've been to cooking school....twice...I just don't really own all that baking stuff.
Eating at work:
I have to pack my lunch daily. Since you know that whole going out to eat thing isn't an option any more. The only problem is, I forget it at home. So sometimes I am just stuck drinking coffee and eating some cheerios because I'm not allergic to those. I'm still working on that.
Calories:
Calories are only somewhat of a problem. Not that I eat too many, but that I don't get enough. I eat at least five times a day and still only manage to eat 800 Kcals a day. This includes while working out too. I need to find a way to increase this.
In case someone didn't read my last post. I went to get tested for food allergies and the results were not in my favor. Read that post for all the details. Adjusting to the soy free and yellow dye free life has been the most challenging out of all the foods, and I thought the tomatoes would be a problem, but when you have nothing to put them on they don't become a problem. I'm just going to break this down in to different categories of struggles and changes.
Grocery shopping:
I now have to read all the labels. My grocery trips now take over two hours for less than half a basket of food. I shop at a small town store that has half of an organic isle that everyone avoids, so I am all alone for most of these two hours. I break out into song "im all alone in the organic isle..." and the grocery employee asks if he can help me with anything. I say, "Yes." We just stare at each other for an awkward minute and he asks, "well....?" to which I reply, "I'm looking for food." He gives me that no shit look. I then list off everything I can't eat and he leaves basically saying I'm SOL. Continuing on through the store I realize that I can no longer eat chocolate. What kind of life am I living? I check out pay my $80 for my 10 or so items and leave broke, hungry, and sad.
Eating at restaurants:
Well I can't do that anymore. The only thing I can get anymore is a salad without tomatoes, lemons or their juice spritzed on the salad to keep it fresh, no cheese, blah blah. They might as well feed me a head of lettuce and I'm not paying $8 for a $1 item.
Eating at home:
Eating at home is fine. I eat a lot of meat, eggs, fruits, and vegetables. I can still eat Sweedish Fish. (that is red candy for those of you like my mom that didn't know), but I can't eat that Sweedish Fish Oreos. But if I want bread, pasta, pancakes, cake, you know all those delicious carbs? I have to make them completely from scratch like the true baker I am. It shouldn't be a problem since I've been to cooking school....twice...I just don't really own all that baking stuff.
Eating at work:
I have to pack my lunch daily. Since you know that whole going out to eat thing isn't an option any more. The only problem is, I forget it at home. So sometimes I am just stuck drinking coffee and eating some cheerios because I'm not allergic to those. I'm still working on that.
Calories:
Calories are only somewhat of a problem. Not that I eat too many, but that I don't get enough. I eat at least five times a day and still only manage to eat 800 Kcals a day. This includes while working out too. I need to find a way to increase this.
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