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.
Thursday, December 21, 2017
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.
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