7/17/13
My shoulder surgery has been cancelled. They want me to go back to therapy. I am not starting over seeing as though I have been dealing with the shit for 8 months. There will be no new post for a while since I decided to cancel all my appointments. Sometimes you just have to know when to quit and know when things are doing more harm than good.
http://www.youtube.com/watch?feature=player_detailpage&v=4Tr0otuiQuU
My music choice for the past 2 days has been Moonlight Sonata on repeat.
Even though I have given up all hope for the medical community, I still will count my blessings:
-new car
-I don't live in a box but if I needed to I could live comfortably in the trunk of my new car
-I can afford my electricity bill
-I have an awesome dog
-I have good friends (even though they keep coming over instead of letting me sleep)
-I have a good edumacashun (yes mom, you do pay all that money for my private school just for me to spell education like that)
-my mom pays for my college
There is much more to be thankful for, though my health is not ever going to be anywhere on that list.
Wednesday, July 17, 2013
Tuesday, July 16, 2013
Why must I get out of bed in the morning?
7/16/13
I did not go to the doctors today but I realized that I am horrible at getting out of bed and I hate mornings. I will tell about a typical morning (this morning) and people will understand why I am not a morning person.
After a restless night's sleep due to pain and getting kicked by Ellie (my dog) my first alarm goes off at 6:30am. I of course turn off the alarm and go back to bed. I repeat the process at 6:45am. Then at 7:00am I actually open my eyes and check Facebook and play my games on my phone until roughly 7:30am. I then crack my back and roll out of bed (like really I roll to get out of bed it is really not graceful.) All my joints hurt and my muscles are stiff. I have to stretch until the pain subsides. I wake up Ellie and let her outside. I proceed to go to the bathroom then go get dressed. At this point my nausea usually hits me. I put my hair up and throw up. Brush my teeth, take down my hair, then leave the house after telling Ellie bye. After I start feeling better which is usually around 9am, I can then take my morning handful of assorted pills which guess what, makes me nauseas. I try to eat something. Anything. As long as I can hold it down I'm all good.
These are the reasons why I don't take the time to get ready in the morning. I am lucky to make it out of the house without getting sick. I don't brush my hair because my hair falls out and its usually up in a ponytail until I leave the house. If I seem wide awake in the morning, it is because my stomach got to me before my alarm went off and in that case I get dressed then lay in bed until its time to leave.
I did not go to the doctors today but I realized that I am horrible at getting out of bed and I hate mornings. I will tell about a typical morning (this morning) and people will understand why I am not a morning person.
After a restless night's sleep due to pain and getting kicked by Ellie (my dog) my first alarm goes off at 6:30am. I of course turn off the alarm and go back to bed. I repeat the process at 6:45am. Then at 7:00am I actually open my eyes and check Facebook and play my games on my phone until roughly 7:30am. I then crack my back and roll out of bed (like really I roll to get out of bed it is really not graceful.) All my joints hurt and my muscles are stiff. I have to stretch until the pain subsides. I wake up Ellie and let her outside. I proceed to go to the bathroom then go get dressed. At this point my nausea usually hits me. I put my hair up and throw up. Brush my teeth, take down my hair, then leave the house after telling Ellie bye. After I start feeling better which is usually around 9am, I can then take my morning handful of assorted pills which guess what, makes me nauseas. I try to eat something. Anything. As long as I can hold it down I'm all good.
These are the reasons why I don't take the time to get ready in the morning. I am lucky to make it out of the house without getting sick. I don't brush my hair because my hair falls out and its usually up in a ponytail until I leave the house. If I seem wide awake in the morning, it is because my stomach got to me before my alarm went off and in that case I get dressed then lay in bed until its time to leave.
Ellie Sleeping
Ellie
So the next time I look like I give you a death glare in the morning it's probably not you, it's just that I've had a rough morning.
Monday, July 15, 2013
Things Just Are Not Working Out
7/15/2013
OK first an update from last week. I went to a new knee surgeon. He agreed to do the knee surgery but no until my shoulder is fixed and stabilized. So no knee surgery for a good 6months or longer. I understand his concerns but this is getting ridiculous.
I also got a call last week from my cardiologist and the test results are in. My parasympathetic nervous system and sympathetic nervous systems are out of sync. This is causing the fainting. Started some new meds and now I am wearing a heart monitor for 2 weeks.
Today: went to see the surgeon for pre-testing stuff. The nurse comes in and says the surgery hasn't been approved by insurance yet. I tell her that insurance has denied my surgery. It was news to her and she was shocked that I knew before she did (shows how well they do their job.) The doctor came in and said that I will have to go through another month of therapy and have yet another steroid injection before he will call the insurance company and try again to be approved for surgery. I asked why he couldn't just pick up the phone and call them and he said that's not how it works (even though the insurance company said they just need proof that I need the surgery since the mri says nothing). He leaves the room and when he comes back I tell him to talk to my mom and hand my mom the phone. She explains to him why I cant have steroid shots (they are the reason why I'm wearing this heart monitor and my nervous system is all screwed up.) He then agrees to call the insurance company. But he is pissed that things didn't go his way. Thanks mom (I know you're reading so Hi!) but it probably saved my life (I'm bound to have a stroke the next time I have a steroid injection.) So for now, who knows if I will be having surgery next Friday. I doubt it but you never know. All those prayers that people say that are going to say for me might actually work. (maybe yall can start praying harder or saying more specific prayers? Or try praying to a list of patron saints I will post below)
St. Catherine of Siena - my patron saint
St. Jude - patron saint of difficult situations
St. Germaine - patron saint of disabled persons
St. Luke - patron saint of physicians
St. John of God - patron saint of the sick
Sts. Cosmas and Damian - patron saints of surgerons
The list of saints goes on but those I think are the main ones to pray to in this situation. I usually am not one to turn to God in a medical situation because of how my scientific mind works but I really need a miracle or just some good luck.
OK first an update from last week. I went to a new knee surgeon. He agreed to do the knee surgery but no until my shoulder is fixed and stabilized. So no knee surgery for a good 6months or longer. I understand his concerns but this is getting ridiculous.
I also got a call last week from my cardiologist and the test results are in. My parasympathetic nervous system and sympathetic nervous systems are out of sync. This is causing the fainting. Started some new meds and now I am wearing a heart monitor for 2 weeks.
Today: went to see the surgeon for pre-testing stuff. The nurse comes in and says the surgery hasn't been approved by insurance yet. I tell her that insurance has denied my surgery. It was news to her and she was shocked that I knew before she did (shows how well they do their job.) The doctor came in and said that I will have to go through another month of therapy and have yet another steroid injection before he will call the insurance company and try again to be approved for surgery. I asked why he couldn't just pick up the phone and call them and he said that's not how it works (even though the insurance company said they just need proof that I need the surgery since the mri says nothing). He leaves the room and when he comes back I tell him to talk to my mom and hand my mom the phone. She explains to him why I cant have steroid shots (they are the reason why I'm wearing this heart monitor and my nervous system is all screwed up.) He then agrees to call the insurance company. But he is pissed that things didn't go his way. Thanks mom (I know you're reading so Hi!) but it probably saved my life (I'm bound to have a stroke the next time I have a steroid injection.) So for now, who knows if I will be having surgery next Friday. I doubt it but you never know. All those prayers that people say that are going to say for me might actually work. (maybe yall can start praying harder or saying more specific prayers? Or try praying to a list of patron saints I will post below)
St. Catherine of Siena - my patron saint
St. Jude - patron saint of difficult situations
St. Germaine - patron saint of disabled persons
St. Luke - patron saint of physicians
St. John of God - patron saint of the sick
Sts. Cosmas and Damian - patron saints of surgerons
The list of saints goes on but those I think are the main ones to pray to in this situation. I usually am not one to turn to God in a medical situation because of how my scientific mind works but I really need a miracle or just some good luck.
Wednesday, July 3, 2013
Heart testing
7/3/2013
Howdy y'all. Today I went back to the cardiologist for heart testing. I did not have to wait in the waiting room this time. The first test was ANSAR the ANS part stands for autonomic nervous system and for the AR, I have no idea what that part stands for. The test was simple but took 20min. They hook up 3 electrodes to you then put on a blood pressure cuff. It monitors your heart rate and respiration by doing an ECG during the whole test and it takes your blood pressure periodically. First you sit relaxed for 5 min, then you do deep breathing exercises for a couple minutes, then you breath deep and strain your abs, then you stand and breath normally for five minutes. The nurse technician was the same nurse that I had last week. She remembered me and my major for school which I was impressed by. Then I had an echo cardiogram. It's basically an ultrasound for your heart while being hooked up to an ECG. This technician was ok. Not my favorite person but she got the job done. I was able to see and hear my heart. I tracked the blood flow through my own heart which was quite intriguing for me. The only part I did not enjoy was when she had to press on my left ribs to get to the side of my heart. My ribs are very tender. While the whole test was uncomfortable pain wise for me, the ribs were the worst. I think its time to find a thoracic surgeon who operates on bones and not just the pulmonary system. I will get a call one day in the future with the results.
Bye y'all!
Monday, July 1, 2013
We have a date!
7/1/2013
Hello my lovely readers! I have some good news and some bad news, but first I would like to start out by saying this is going to be a busy week. I have 3 more doctors appointments to attend this week in addition to the one that I went to this morning.
I shall start with the good news which I have been holding in all day (it was so hard for me to refrain posting it on Facebook.) I saw a new doctor today for my shoulder. I had a hard time finding his office because I was not expecting it to be in an old house that was converted into a doctors office. There was no parking but luckily after driving around, I saw someone leave then stole their spot. I was a little skeptical at first about how well this appointment was going to go from the patients I saw in the waiting room. I filled out an ungodly amount of paperwork (like 10 pages basically repeating the same questions) and was surprised by some of the questions. I was taken back fairly quickly after filling out all my paper work and had x-rays of my shoulder and neck taken. They did not put that lead shield over my reproductive organs (I am bound to get ovarian cancer one day due to this.) I was then taken into a room. The doctor came in and we talked. He said he could do a cortisone shot but since I have metabolic issues that go haywire when I get steroid injections I said lets just skip all the nonsense today. Since we skipped that and moved on to why I was there (to get my shoulder fixed) he agreed that something should be done. His opinion is that I have an impingement due to torn cartilage from the car accident. So what is going to be done about this you ask? He is going to scope my shoulder July 26th and clean up all torn cartilage and repair any torn ligaments and if needed he will open me up completely and put pins in to stabilize my shoulder! Fun stuff right there. Now why couldn't "Memphis's best orthopedic group" agree to something like this and why did it take them 8 months for them to say no surgery? Who knows. I do have some complaints about this office though. Numerous times random staff members walked into the office without knocking to look in the cabinets for supplies they ran out of in other rooms. This could be fixed though.
Now you are probably wondering what the bad news is since I have a surgery date. Well here it goes. I was supposed to see "Memphis's best orthopedic group" for my knee tomorrow. Surgery was scheduled then cancelled by another doctor because he doesn't operate at hospitals. So went to see a new surgeon. He seemed eager to do surgery and I had hope that he would because after all I have let him operate on me before, but he called today and cancelled by appointment. He said that he called the first surgeon and after talking to him about the procedure he was going to do, he realized that he is not a skilled enough surgeon to do the surgery (after all he is only a sports medicine doctor.) At least the man was honest about his capabilities. He then recommended that I see yet another surgeon. And guess who he recommended! If you guessed the surgeon who said he wouldn't do my shoulder sugery because 70 percent success ratings aren't good enough for him then you guessed correctly! If not then nice try anyways. So I will be seeing yet another new surgeon next week for my knee. In the mean time I have other appointments to attend to with various other problems.
Over-all, I am content with today's doctors adventures.
Hello my lovely readers! I have some good news and some bad news, but first I would like to start out by saying this is going to be a busy week. I have 3 more doctors appointments to attend this week in addition to the one that I went to this morning.
I shall start with the good news which I have been holding in all day (it was so hard for me to refrain posting it on Facebook.) I saw a new doctor today for my shoulder. I had a hard time finding his office because I was not expecting it to be in an old house that was converted into a doctors office. There was no parking but luckily after driving around, I saw someone leave then stole their spot. I was a little skeptical at first about how well this appointment was going to go from the patients I saw in the waiting room. I filled out an ungodly amount of paperwork (like 10 pages basically repeating the same questions) and was surprised by some of the questions. I was taken back fairly quickly after filling out all my paper work and had x-rays of my shoulder and neck taken. They did not put that lead shield over my reproductive organs (I am bound to get ovarian cancer one day due to this.) I was then taken into a room. The doctor came in and we talked. He said he could do a cortisone shot but since I have metabolic issues that go haywire when I get steroid injections I said lets just skip all the nonsense today. Since we skipped that and moved on to why I was there (to get my shoulder fixed) he agreed that something should be done. His opinion is that I have an impingement due to torn cartilage from the car accident. So what is going to be done about this you ask? He is going to scope my shoulder July 26th and clean up all torn cartilage and repair any torn ligaments and if needed he will open me up completely and put pins in to stabilize my shoulder! Fun stuff right there. Now why couldn't "Memphis's best orthopedic group" agree to something like this and why did it take them 8 months for them to say no surgery? Who knows. I do have some complaints about this office though. Numerous times random staff members walked into the office without knocking to look in the cabinets for supplies they ran out of in other rooms. This could be fixed though.
Fire place in the waiting room.
TV over the mantel.
Nice short exam table.
Granite counter tops. OOOh.
Now you are probably wondering what the bad news is since I have a surgery date. Well here it goes. I was supposed to see "Memphis's best orthopedic group" for my knee tomorrow. Surgery was scheduled then cancelled by another doctor because he doesn't operate at hospitals. So went to see a new surgeon. He seemed eager to do surgery and I had hope that he would because after all I have let him operate on me before, but he called today and cancelled by appointment. He said that he called the first surgeon and after talking to him about the procedure he was going to do, he realized that he is not a skilled enough surgeon to do the surgery (after all he is only a sports medicine doctor.) At least the man was honest about his capabilities. He then recommended that I see yet another surgeon. And guess who he recommended! If you guessed the surgeon who said he wouldn't do my shoulder sugery because 70 percent success ratings aren't good enough for him then you guessed correctly! If not then nice try anyways. So I will be seeing yet another new surgeon next week for my knee. In the mean time I have other appointments to attend to with various other problems.
Over-all, I am content with today's doctors adventures.
Thursday, June 27, 2013
The Cardiologist Isn't That Bad.
6/27/2013
Hey yall. Well, today's doctors visit went much better than yesterday's visit. This time I went to go see a cardiolgist for the first time ever. My primary care doctor made the appointment for me because I have been fainting at least twice a day for the past month. The office was nice and cozy. The receptionist was very friendly and was quick about returning my insurance cards and I was quick with filling out 3 front and back pages of paperwork. My only complaint about this doctor was the hour and a half wait. I was taken back into the room. My blood pressure was taken sitting, lying down, then standing and it remained a consistant 100/68. I then had a quick EKG. The doctor then came in and listened to my heart. She said the EKG was normal and that my blood pressure seemed fine. She believes I have an autonomic imbalance bewteen my parasympathetic nervous system and my sympathethic nervous system. I will be tested for this when I go back next Wednesday. So, I would say today was a success.
Below are some links to expand your knowlege on my possible diagnosis.
http://www.drbuckeye.com/
http://umm.edu/health/medical/
Below are pictures I took of the office.
Oh, it feels as though I broke my right wrist. I do not have time to deal with that right now, so I will ignore it until I go back to the orthopedic doctor next week,
Thanks for reading!
-Crippling Scars
Hey yall. Well, today's doctors visit went much better than yesterday's visit. This time I went to go see a cardiolgist for the first time ever. My primary care doctor made the appointment for me because I have been fainting at least twice a day for the past month. The office was nice and cozy. The receptionist was very friendly and was quick about returning my insurance cards and I was quick with filling out 3 front and back pages of paperwork. My only complaint about this doctor was the hour and a half wait. I was taken back into the room. My blood pressure was taken sitting, lying down, then standing and it remained a consistant 100/68. I then had a quick EKG. The doctor then came in and listened to my heart. She said the EKG was normal and that my blood pressure seemed fine. She believes I have an autonomic imbalance bewteen my parasympathetic nervous system and my sympathethic nervous system. I will be tested for this when I go back next Wednesday. So, I would say today was a success.
Below are some links to expand your knowlege on my possible diagnosis.
http://www.drbuckeye.com/
http://umm.edu/health/medical/
Below are pictures I took of the office.
Oh, it feels as though I broke my right wrist. I do not have time to deal with that right now, so I will ignore it until I go back to the orthopedic doctor next week,
Thanks for reading!
-Crippling Scars
Wednesday, June 26, 2013
You can see another doctor
6/26/13
Hey guys! First time blogging ever so please forgive my skills.
A little back ground information: I was born with a rare bone disease called Multiple Hereditary Exostosis. Basically, I have bone tumors in all my joints and it causes major soft tissue damage. Most doctors have never treated it. Besides me and my family, there is only one other girl in Memphis, TN that has this disease. My main problem is finding doctors to treat me.
I was in a car wreck in November 2012. A lady slammed into me while I was at a redlight and it separated my left collar bone. It is now June 2013 and it has only gotten worse. I have seen 2 surgeons about it and have had numerous x-rays and MRIs. I tried resting it, therapy, and all that great stuff that never works for me. The normal surgery they would do for this situation, I have already had done back in 2007.
Today's doctors adventures:
I see the cheif of staff (head surgeon) at one of the top orthopedic groups in Memphis, TN. My first question when he walked in the door is "do I have any metal in my shoulder from the last surgery?" His answer, "No, but let me go look on the x-ray." He comes back and says that there is no metal. I told him that the MRI report says that there is metal in there. He has no answer to how that could be. He goes on to explain that I have a grade 3 AC joint separation (thats pretty bad.) There is a surgical fix but they usually only do it on football players. I said that I want it done. He said there is only a 70 percent success rate. My reply, "OK, sounds great!" But, wait for it....wait for it. He will not do the surgery since there is a 30 percent failure rate. I looked at him with tears in my eyes and asked for him to please do the surgery. If it doesnt work then oh well, we at least tried. He said that he will not do the surgery and had referred me on to yet another doctor. I go back next Friday to see that surgeon. I would say hopefully he will have an acceptable answer but at this point I have lost all hope.
Thanks for reading.
-A crippled covered in scars.
Hey guys! First time blogging ever so please forgive my skills.
A little back ground information: I was born with a rare bone disease called Multiple Hereditary Exostosis. Basically, I have bone tumors in all my joints and it causes major soft tissue damage. Most doctors have never treated it. Besides me and my family, there is only one other girl in Memphis, TN that has this disease. My main problem is finding doctors to treat me.
I was in a car wreck in November 2012. A lady slammed into me while I was at a redlight and it separated my left collar bone. It is now June 2013 and it has only gotten worse. I have seen 2 surgeons about it and have had numerous x-rays and MRIs. I tried resting it, therapy, and all that great stuff that never works for me. The normal surgery they would do for this situation, I have already had done back in 2007.
Today's doctors adventures:
I see the cheif of staff (head surgeon) at one of the top orthopedic groups in Memphis, TN. My first question when he walked in the door is "do I have any metal in my shoulder from the last surgery?" His answer, "No, but let me go look on the x-ray." He comes back and says that there is no metal. I told him that the MRI report says that there is metal in there. He has no answer to how that could be. He goes on to explain that I have a grade 3 AC joint separation (thats pretty bad.) There is a surgical fix but they usually only do it on football players. I said that I want it done. He said there is only a 70 percent success rate. My reply, "OK, sounds great!" But, wait for it....wait for it. He will not do the surgery since there is a 30 percent failure rate. I looked at him with tears in my eyes and asked for him to please do the surgery. If it doesnt work then oh well, we at least tried. He said that he will not do the surgery and had referred me on to yet another doctor. I go back next Friday to see that surgeon. I would say hopefully he will have an acceptable answer but at this point I have lost all hope.
Thanks for reading.
-A crippled covered in scars.
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