All I can say at this moment in time is WOW! I am just in awe of how many people have read my blog and are cheering me on. What a great feeling it is to know that so many people care so much about what is going on in your life. I really can not describe it in words! The day that I posted this blog I was over flooded with so much support and help. I need people to know that everything they have written in support and I have read I've taken to heart! I do believe that things happen for a reason and no matter how hard you try to control things you are never truly in control. This summer has not been one of my favorites and definitely not the summer attraction that I would have liked it to be. I would have preferred to be able to go on a vacation, bask in the sun at a beach, and pretend that life was like a summer beer commercial. However, I sat mostly at home reading books and organizing as much as I physically was able to (which was not very much). I also tried to live vicariously through pictures of vacations that friends have posted on Facebook.
Facebook......oh how wonderful social technology can be! I know there is much controversy when it comes to Facebook but I do believe that it has a positive side. The positive that it has had for me is the ability to connect with old friends and having those friends help you out in a time of need! After I posted my story on Cushing's, my very first roomie from college got in touch with me. She is a nurse at UPMC Medical Center in Pittsburg PA and mentioned that she works with a Neurosurgeon. They have seen many cases such as mine and she mentioned that she has heard stories like mine over and over again. So she asked me to message her to discuss what was going on. Let's just say....I messaged her the moment I finished reading her comment!
When I think about it now.....the moment I began typing my message I think life began to spin in motion again. The next day my friend and I talked. She set up an appointment for me to see the Endocrinologist as well as the Neurosurgeon. She was able to set up both appointments in ONE day! I was impressed. It has taken me weeks......even months to set up appointments to see my Endocrinologist, Neurosurgeon, and ENT. Here it took only hours for my friend to set up an appointment AND I was able to get in within 2 weeks!! This was crazy!! Crazy exciting!! I didn't have to wait 2 whole months for them to contact me or see me. They were actually working around my time schedule! So here goes the wheel in motion.... I was able to go get my medical records and have them released. I already had copies of my MRI. I gathered all of the paperwork I have collected and put them all into a file (Yeah I know...that's the SPED teacher in me!) All I had to do now was wait to go.
Well the 2 weeks went by fast because here I am in Pittsburg PA and spent the day at UPMC Medical Center. All I can say is that I am impressed! UPMC is a very large hospital but also very intimidating. It is also very confusing and easy for someone to get lost in. Yes, I will admit I did get lost and had to ask several people where to go. Actually, two very nice nurses walked me and my friend to where the Endocrinologist was. So..... when I got there, I told my story again for the umpteenth time to the Endocrinologist (I also had to repeat my story again to the Neurosurgeon). Everybody was very patient and took the time to listen to everything I had to say. They genuinely were engaged and wanted to know what was going on. All of the doctors told me things that I already knew, but I also learned a few new things! One thing I learned more about was the recovery that I would be going through. We discussed the surgery recovery but also the time it will take for my pituitary gland to get back into working order. They discussed that I would more than likely feel worse before I feel better. I would feel fatigued and icky but I would need to fight through that! I think my eyes popped when the Endo told me that! I've been fighting fatigue for years!! My battle isn't over! However, I appreciated that she didn't sugar coat it. The Endo mentioned that it's not going to be like a gull bladder surgery were you go into surgery not feeling well then come back out feeling better shortly after surgery. This is going to take time! PATIENCE.....(something I still am working on!!) I was also very impressed to have met not just one but TWO Neurosurgeon's. Discussing surgery was much different than when I talked surgery with my other Neurosurgeon. These Dr.'s stated the surgery would only take 2 hours (not 4-6), I wouldn't have stints in my nose afterwards, and my tumor location would require a very simple operation to remove it. My other Neuro made it sound like I was having MAJOR brain surgery and that there could be complications that would be negative and so forth. Now there's always risk when it comes to surgery but these doctors sounded more sure of themselves. Plus they perform this kind of operation 5-10 times a week. My other Neuro- 5-10 per year. These Dr.'s know what they are talking about!!! Yay!!
Needless to say....now I have to go through more testing. So I get to vacation in Pittsburgh at my friends house for a few more days. Today they took many vials of blood. I almost passed out because of all of the blood they took. However, as I sat in the chair giving up ocean's of blood my friend was feeding me a banana. Have I mentioned that I have the bestest friends in the world?!?!? I also have to do another 24 hour urine test (not liking that- hate those tests), a saliva test, and a suppression test. The Endocrinologist just wants to make sure that the tests come back showing that I have Cushing's. One problem my other Endo had when it came to my test results are the scales they used to indicate cortisol and ACTH levels. This new Endocrinologist understood why my Endo would have been confused. She has a more conservative scale (or indepth scale) to interpret the results. From what I heard she is a VERY good and precise Endocrinologist! Many people we ran into (in the office and whom we met getting lost in the building) stated that she was extremely good and strict with her findings. They stated that if I had Cushing's disease she would be the one to diagnosis it!!! My personal experience, after talking to her.....she knows her stuff!! I also liked the fact the Endocrinologist and the Neurosurgeon know each other very well and talk to each other often. My other doctors hardly knew each other! That makes a HUGE difference in my opinion! Especially when it comes to surgery such as this! This truly is a team effort which is extremely comforting to know!
SO........I am hoping that these test results will give me an answer and solution to what I have been going through. It will be a couple of weeks before I get the results back. When I get the results back we will then make a decision to what future plans will be made. Surgery? No surgery? Who knows? As of right this very minute it decisions continue to be up in the air. So until further test results we are still waiting......and I'm still standing! Yeah Yeah Yeah! (sing it!)
Tuesday, July 30, 2013
Monday, July 15, 2013
The Background Story........
Welcome to my blog! I decided to start a blog just to keep those who are asking me questions and are interested/concerned with what has been going on with my health. I will try to keep you updated on the up's and down's that I have been going through. Here is the background story. So if your still interested read on..............
It started about a year ago when I decided to challenge myself (along with my friends) to run the Disney Princess Half Marathon. I know what your thinking...crazy right?!? Well I was bound and determine to achieve this goal! I still am but it is going to take me longer than anticipated.
I started training for the DPHM in May 2012 and everything was going along just fine. Nothing too devastating or hard because I began where a beginning runner should start....slow and steady! Well as I progressed in my running I began to start having some issues with my legs. My ankles started swelling and inflamed to twice the size they should. At first I thought I was taking in too much salt and not adhering to my runner diet like I should. It was also an incredibly humid and HOT summer. So I cut out as much salt as I could and nothing seemed to change. I also thought that I was running too hard so of course I slowed that down too! Well after a month I started developing more issues and decided to go see my doctor. Thinking here I'm trying to get healthy and I'm having nothing but problems.
Well I went to see my doctor in August and she decided to put me on a water pill for two reasons. First for the swelling in my ankles and second because I had developed high blood pressure (something I have NEVER had in my life). Now don't get too concerned. I was showing signs of high blood pressure but it was high blood pressure on the low side....if that makes any sense. So I'm still not too concerned about what was going on with my body and kept to my training of running and dieting. It was AWESOME!! I was kicking arse!! I have never been an athlete but I was enjoying what I found to be called the runners high. For the first time in my life I found something that I could do at my own pace and gradually get better at it! So with my awesome friends, I decided to join a couple 5K runs! I had run/walked the Cincinnati Flying Pig 5K that past May which got me into the running bug. Then ran the Run For Your Life 5K (actually it was a one miler walk for me) in June. In September I wanted to run but walked the Susan G. Komen 5K, then was preparing to run the first annual Women Who Run in Cleveland race. This was the race that stopped me in my tracks! Up until that race I was feeling good and thought I could do this....I could actually run the Disney Princess Half Marathon!! A week before this race I had tweaked my back while running a six mile stretch. I was hoping that if I slowed down and iced my back a lot the pain would go away. The pain did go away up until the middle of the Women Who Run race. Halfway through the race I totally threw my back out. Even though I was at the end of the running pack I was proud that I wasn't going to end up being the very last one! Well that all changed when I hit mile 1.5. I was keeping up with my pace, doing well, then BAM! The pain began shooting down my legs!! I slowed down dramatically and you could tell that I wasn't even able to walk properly! The one thing that really drags me into this sport of running is earning medals. Medals are COOL! In the Women Who Run race, you are able to earn a finisher's medal! I REALLY wanted to EARN that medal! I love my medal's!!! I knew I did myself in even more with my back when I refused to let the person in the car who follows the last runner drive me to the finish line. I wanted that darn medal and told him that I was going to cross that finish line crawling if I had to. I wanted to earn that medal the real and honest way!! Of course he laughed at me and said I had spunk but allowed me to continue to finish the race. My friends (have I mentioned how awesome they are?) ran back to find me and walked along with me to the finish line. Now my friends know how stubborn I can be but I think I surprised the people at the end of the race. The moral to that story.... slow and steady wins the race. I got my medal and I'm EXTREMELY proud of it!
Well after that race I decided to go straight to my chiropractor! He is awesome!!!! He is not only a chiropractor but also a sports physician and has gotten me out of pain like this before!! I told him what I was doing and that I wanted to run the Disney Princess Half Marathon which was in February, nearly four months away. It was November when all this pain with my back happened. I went to see him 3 times a week for the next couple of weeks. After about 8 sessions (adjustments) I asked my chiropractor if he thought I'd be able to run the DPHM. He told me that if the pain was muscular that it could be possible, but if it was nerve then more than likely not. I asked what he thought it was and he said nerve. WELL DAMN!! That felt like the biggest slap in the face that I ever had. I was about to cry right there and then. All of this work and now it was going down the drain! I couldn't understand why something that was suppose to be good for me was killing me at the same time! Well after about a week of sulking I decided to pull out of the DPHM. I thought that I better focus on getting better and making a more long term goal of running. I decided to change my goal to run the Disney Princess Half Marathon in February 2015!! I WILL run the DPHM but not for a couple of years. So let's focus on strength and endurance!
Well as the holidays came along and I slowly (I repeat slowly) started doing better with my back I decided to create a visual plan to help keep me motivated! January came and I wanted to start slowly walking/running again! I got back on the treadmill and worked out a few times! Then wouldn't you know it, the biggest pain I have ever felt (next to my back pain) came while I was teaching! I was standing in class, doing some work on the board with my kids, and shifted my weight standing to my left side. Something any normal person does when standing....when all of the sudden it felt like someone had stabbed a knife in my left foot. I could barely walk, stand, or do anything. I had to laugh because if I didn't I was going to cry and my students would not understand the pain I was feeling at that moment in time. Well before this new pain in my foot, I had gone to see my regular doctor several times and still there was no change in my earlier symptoms. Actually I had added to my reputair of symptoms- sleep apnea. I know right?! Really?!? I was and am not pleased with that one to this day! If god decides to take me during my sleep then bless him because I can't wear some strange mask covering my face. Trust me....I've tried and wake up each time having had ripped that stupid thing off of my face. This is not on purpose either! Back to the pain in my foot......I decided to go to my chiropractor instead of my regular doctor mainly because I am impatient. I knew it would take a while to get in to see my regular doctor and only about a day to see my chiropractor. So I choose the latter of the two. When I went in to see my chiropractor he sent me to get an MRI done of my foot to find out that I had developed a stress fracture. I was then sent to an orthopedic doctor who put me in a boot. I had to wear the boot for about four-five weeks. Not too much fun but it did make my foot feel better! I didn't have to bend it! What fun it was to go to school everyday wearing a boot *not*. I think a was asked a zillion times what had happened. Of course I just wanted to say "Nothing!" but I knew those who were asking we're just concerned about me so my running story I told over and over again.
As timed passed my body didn't seem to really recover. My foot was feeling better but my other foot started developing pain. My legs were getting weak, I couldn't walk up and down stairs, I developed severe acne all over my face (even worst than when I was a teenager!), I was losing my hair, and developing bruises for no reason. It was time for me to go and see my regular doctor again. When I got to her office she noticed that I mentioned on Facebook that I went to see an orthopedic Dr. and was put in a boot (gotta love Facebook....the social media into everyone's lives:). She was concerned and felt that I might have developed what is called Cushings. My first thought......what the hell is Cushing's? We did some blood work and then had an MRI taken of my head to check out to see if I had any adnomas in my pituitary gland. Adnoma....my new fancy word for Tumor! Well wouldn't you know it....they found one! I have a 9mm tumor in my pituitary gland which has been reeking havoc all over my body. My blood work came back with cortisol levels and ACTH levels twice as high as they should be. Not a good sign! So off to the Endocrinologist I was sent!
Bad thing about being sent off to the Endocrinologist was that I had to wait two very long months before I was able to see him! So while I was waiting for my appointment my body was feeling even worst and extremely sore making it very hard to do the average things a normal person does. I felt about 180 years old and hated the fact that I shouldn't be feeling 180 years old. Ironically, during this time waiting for my endocrinologist appointment the Cushing's itself began to regress. What does that mean? I had Cushing's that was secreting extra cortisol and ACTH enough to deteriorate my body and make life miserable, BUT stopped secreting sometime during those two months of waiting. When we did further blood and test results my cortisol levels and ACTH levels came back in the average range making my endocrinologist very confused!
When I met my endocrinologist for the very first time, I gave him the low down on all of my symptoms. He asked me many questions and stated that "Yes, I had Cushing's Disease". I thought.... "GREAT, we have an answer to what is going on with my body but now what is the solution going to be?". Talking to my regular doctor and also to my endocrinologist the best solution would to be to remove the tumor from my pituitary gland. FREAK OUT! Yep! Brain surgery!!! Holy Shit! This little tumor that has been reeking havoc all over my body needed to be removed from my brain (or at least the base of my brain which is where your pituitary gland is found). So from March until June I have been focusing on getting my mind set that I have to have surgery to remove this tumor. I kept saying to myself "That is what was best for me, I had to do it, surgery was going to be a good thing!" Well of course when it comes to hospitals and any other medical type situations, it takes forever and a day to get things done. So After I talked to the Endocrinologist I had scheduled a time to see a Neurologist. I went in to see this new doctor and he explained the type of tumor that I had, the size, and where it was found in my pituitary gland. However, I also needed to go and see an ENT surgeon because it was going to take 2 doctors to open me up, take out the tumor, and close me back up. To remove a tumor from your pituitary gland the type of surgery performed is endoscopic which is through your nose. Sounds like fun right?!? The ENT is the guy who guides the neurosurgeon to where the tumor is. The neurosurgeon takes out the tumor and the the ENT makes sure everything that needs to be cleaned up and put back together again is done. Well scheduling appointments with doctors takes forever but luckily my nuero doc was able to help pull strings to get my mid July appointment moved earlier in June so that I could get the surgery done during the summer. I am a teacher and I wanted time to rest, relax, and heal. I know how I felt during the school year with all of the symptoms that I had to deal with I wanted to be sure that I could rest without worry! So needless to say I have had a crappy, boring summer!! My surgery was scheduled for June 27th. I had it on my calendar, was getting ready and prepared for it, had made plans for who was taking care of my dogs, made sure all bills were paid, figured out who would be taking care of me, and made sure my house was clean because I knew I'd be having A LOT of guests!
After surgery was planned and we settled on a date, so many ideas and thoughts went running crazy in my mind. What if the doctor accidentally slipped and I turned into a vegetable? What if the surgery didn't work and I still had all the symptoms that I was suffering from? Filling out a Living Will was not something I thought I'd be doing at such a young age. All the responsibility that I had I needed to make sure was taken care of. This was crazy!! Well the Tuesday before surgery my endocrinologist called and wanted to schedule an appointment that coming Friday. I was totally confused!!! I said "Sure....but I might be in a comatose state due to the fact that I was going to be having brain surgery the day before." Stunned the lady who had called me said she would let my endocrinologist know and that he would get back to me. Well of course my endocrinologist got back to me!!! The night before surgery he got back to me! He stated that he wanted to do further testing to make sure that having surgery to remove the tumor was needed. He was not sure that I truly had Cushing's Disease. What the hell? Are you kidding me? I go to see you.....you tell me I have Cushing's Disease.....you state that surgery would be the best option.....and NOW you call the night before surgery to tell me you don't think this is a good idea?!? Well he decided to call my regular doctor and consult with a third doctor to get their opinions. In collaboration all together they decided that I should continue with the surgery for the next day. So there it is.......a decision had been made.....I was going to have the surgery and life was going to get better!
HERE COMES THE MAJOR TWIST IN MY STORY!!............
Well of course the night before I was not able to sleep very well. Would you be able to sleep knowing that you were about to have brain surgery? I didn't know what my future would hold or if I'd have a future after that day. When you go into have surgery your not allowed to eat after midnight the night before. I don't think I was able to eat the entire day before! Before I knew it, 4:30am had come around and it was time for me to get up, take a shower, get my stuff together, and wait for my dad to come and pick me up for surgery. It was the longest ride ever to the hospital and I really didn't have much to say! When we got to the hospital my step-mom dropped my dad and I off and we headed into surgery to check in. It was very quiet and kind of scary but I checked-in and we sat down and waited to be called. As we were sitting there, I of course began to cry (which I hate to do) and tried to keep it all together. Brain surgery, Brain surgery, Brain surgery.....that is all that kept running through my head! But I also was trying to remind myself how this was going to be a good thing and that my quality of life was going to be better!! Well my name was called and I was getting ready to go back into surgery when all of the sudden I saw my endocrinologist! My first thought....what the hell? Why is my endocrinologist here? He is not the one who is performing the surgery! I walked up to the counter and my endocrinologist asked if I would step into a room with him. What was I suppose to say? No...cut my brain open!?! SO of course I said yes. He went and got my dad and step-mom then sat us down in a little room to discuss the situation. He stated that he couldn't sleep that night and really wanted to do more tests to see if it truly is Cushing's Disease. We discussed what all I'd have to do for further testing and what we would do with the results. Well let me just say.....it just got even more confusing and no one was able to give me a direct answer to what is or was going on. we still know that there is a tumor in my pituitary gland but it maybe on the down wave of Cushing's (meaning it would not be necessary for me to have surgery). I asked that if I didn't want to do further testing and wanted to continue with the surgery to remove the tumor would that be possible? Well by that time my neurologist had come in and stated that he cancelled the surgery. That gave me my answer......so further testing it was!
I spent an entire week going back and forth to the hospital doing blood work and urine samples (the worst test EVER to have to do is a 24 hour urine sample for 7 straight days!!!). I felt like I was grounded and couldn't go out to play!! Sorry if that is too much information! Well I did my testing and of course the test results have all come back in the average/normal range. Again, what does this mean? This means that I currently do not have Cushing's Disease because I am not secreting extra cortisol and ACTH levels. However, it could come back. Is there a way for me to make sure it doesn't come back? NO! Is there anything I can do to prevent it from secreting again? NO! Are my questions answered and problems solved? NO! Because of the time I was suffering from Cushing's I believe I developed Osteoporosis! However, because I'm not showing sign's of Cushing's my doctors think the osteoporosis could have developed from some other problem! My doctor's are just not sure! As my regular doctor stated.....I am an anomaly. What's new?!? I've always known that I was weird! Now I've been tested and have proof!!
Well to make a long story short.......I am not going to be having surgery anytime soon. We are going to keep an eye on the tumor to make sure that it is not growing! We are also going to have to continue testing to check and make sure the Cushing's has not returned. I am recovering from most of the symptoms that I was suffering from during the past year. The only symptoms that I continue to struggle with are the weakness in my legs and the pain in my lower body! From everything that I have read.....Cushing's has a very slow recovery process! Which of course is very frustrating for me!! Like I stated before, I am a very impatient person! I like to be able to get things done and get them done in a timely manner! Sitting on my butt watching the world go by is not my idea of fun!
SO......I still have the goal of running the Disney Princess Half Marathon! That is something that I do not want to give up on!! I hope to achieve that goal in February 2015. Even though my body is still fighting me and I'm very sore, I have begun to slowly walk and take things one step at a time (HA! no pun intended). I have signed up for a 5K at the beginning of September. However, it is a virtual 5K and I can run/walk it at my own pace! More than likely walk! This just gives me an achievable goal and something to look forward to. YES.....I even get a medal!!
I want to thank EVERYONE who has been so concerned about me and my health! One major lesson that I have learned going through all of this is what truly great people I have in my life! God has given me so much and I am feeling very lucky and blessed! So if you still want to continue to know what is going on with my Journey to the Disney Princess Half Marathon, please stay posted to this blog. I am not sure when I will be writing updates here but it is a way for me to let everyone know what is going on without repeating myself over and over and over again! This story has not ended because my Journey has only begun!!!
Okay my kooky, funky, soul singing friends....sing it with me!! Don't Stop Believin! Hold on to that Feeling!!!
It started about a year ago when I decided to challenge myself (along with my friends) to run the Disney Princess Half Marathon. I know what your thinking...crazy right?!? Well I was bound and determine to achieve this goal! I still am but it is going to take me longer than anticipated.
I started training for the DPHM in May 2012 and everything was going along just fine. Nothing too devastating or hard because I began where a beginning runner should start....slow and steady! Well as I progressed in my running I began to start having some issues with my legs. My ankles started swelling and inflamed to twice the size they should. At first I thought I was taking in too much salt and not adhering to my runner diet like I should. It was also an incredibly humid and HOT summer. So I cut out as much salt as I could and nothing seemed to change. I also thought that I was running too hard so of course I slowed that down too! Well after a month I started developing more issues and decided to go see my doctor. Thinking here I'm trying to get healthy and I'm having nothing but problems.
Well I went to see my doctor in August and she decided to put me on a water pill for two reasons. First for the swelling in my ankles and second because I had developed high blood pressure (something I have NEVER had in my life). Now don't get too concerned. I was showing signs of high blood pressure but it was high blood pressure on the low side....if that makes any sense. So I'm still not too concerned about what was going on with my body and kept to my training of running and dieting. It was AWESOME!! I was kicking arse!! I have never been an athlete but I was enjoying what I found to be called the runners high. For the first time in my life I found something that I could do at my own pace and gradually get better at it! So with my awesome friends, I decided to join a couple 5K runs! I had run/walked the Cincinnati Flying Pig 5K that past May which got me into the running bug. Then ran the Run For Your Life 5K (actually it was a one miler walk for me) in June. In September I wanted to run but walked the Susan G. Komen 5K, then was preparing to run the first annual Women Who Run in Cleveland race. This was the race that stopped me in my tracks! Up until that race I was feeling good and thought I could do this....I could actually run the Disney Princess Half Marathon!! A week before this race I had tweaked my back while running a six mile stretch. I was hoping that if I slowed down and iced my back a lot the pain would go away. The pain did go away up until the middle of the Women Who Run race. Halfway through the race I totally threw my back out. Even though I was at the end of the running pack I was proud that I wasn't going to end up being the very last one! Well that all changed when I hit mile 1.5. I was keeping up with my pace, doing well, then BAM! The pain began shooting down my legs!! I slowed down dramatically and you could tell that I wasn't even able to walk properly! The one thing that really drags me into this sport of running is earning medals. Medals are COOL! In the Women Who Run race, you are able to earn a finisher's medal! I REALLY wanted to EARN that medal! I love my medal's!!! I knew I did myself in even more with my back when I refused to let the person in the car who follows the last runner drive me to the finish line. I wanted that darn medal and told him that I was going to cross that finish line crawling if I had to. I wanted to earn that medal the real and honest way!! Of course he laughed at me and said I had spunk but allowed me to continue to finish the race. My friends (have I mentioned how awesome they are?) ran back to find me and walked along with me to the finish line. Now my friends know how stubborn I can be but I think I surprised the people at the end of the race. The moral to that story.... slow and steady wins the race. I got my medal and I'm EXTREMELY proud of it!
Well as the holidays came along and I slowly (I repeat slowly) started doing better with my back I decided to create a visual plan to help keep me motivated! January came and I wanted to start slowly walking/running again! I got back on the treadmill and worked out a few times! Then wouldn't you know it, the biggest pain I have ever felt (next to my back pain) came while I was teaching! I was standing in class, doing some work on the board with my kids, and shifted my weight standing to my left side. Something any normal person does when standing....when all of the sudden it felt like someone had stabbed a knife in my left foot. I could barely walk, stand, or do anything. I had to laugh because if I didn't I was going to cry and my students would not understand the pain I was feeling at that moment in time. Well before this new pain in my foot, I had gone to see my regular doctor several times and still there was no change in my earlier symptoms. Actually I had added to my reputair of symptoms- sleep apnea. I know right?! Really?!? I was and am not pleased with that one to this day! If god decides to take me during my sleep then bless him because I can't wear some strange mask covering my face. Trust me....I've tried and wake up each time having had ripped that stupid thing off of my face. This is not on purpose either! Back to the pain in my foot......I decided to go to my chiropractor instead of my regular doctor mainly because I am impatient. I knew it would take a while to get in to see my regular doctor and only about a day to see my chiropractor. So I choose the latter of the two. When I went in to see my chiropractor he sent me to get an MRI done of my foot to find out that I had developed a stress fracture. I was then sent to an orthopedic doctor who put me in a boot. I had to wear the boot for about four-five weeks. Not too much fun but it did make my foot feel better! I didn't have to bend it! What fun it was to go to school everyday wearing a boot *not*. I think a was asked a zillion times what had happened. Of course I just wanted to say "Nothing!" but I knew those who were asking we're just concerned about me so my running story I told over and over again.
As timed passed my body didn't seem to really recover. My foot was feeling better but my other foot started developing pain. My legs were getting weak, I couldn't walk up and down stairs, I developed severe acne all over my face (even worst than when I was a teenager!), I was losing my hair, and developing bruises for no reason. It was time for me to go and see my regular doctor again. When I got to her office she noticed that I mentioned on Facebook that I went to see an orthopedic Dr. and was put in a boot (gotta love Facebook....the social media into everyone's lives:). She was concerned and felt that I might have developed what is called Cushings. My first thought......what the hell is Cushing's? We did some blood work and then had an MRI taken of my head to check out to see if I had any adnomas in my pituitary gland. Adnoma....my new fancy word for Tumor! Well wouldn't you know it....they found one! I have a 9mm tumor in my pituitary gland which has been reeking havoc all over my body. My blood work came back with cortisol levels and ACTH levels twice as high as they should be. Not a good sign! So off to the Endocrinologist I was sent!
Bad thing about being sent off to the Endocrinologist was that I had to wait two very long months before I was able to see him! So while I was waiting for my appointment my body was feeling even worst and extremely sore making it very hard to do the average things a normal person does. I felt about 180 years old and hated the fact that I shouldn't be feeling 180 years old. Ironically, during this time waiting for my endocrinologist appointment the Cushing's itself began to regress. What does that mean? I had Cushing's that was secreting extra cortisol and ACTH enough to deteriorate my body and make life miserable, BUT stopped secreting sometime during those two months of waiting. When we did further blood and test results my cortisol levels and ACTH levels came back in the average range making my endocrinologist very confused!
When I met my endocrinologist for the very first time, I gave him the low down on all of my symptoms. He asked me many questions and stated that "Yes, I had Cushing's Disease". I thought.... "GREAT, we have an answer to what is going on with my body but now what is the solution going to be?". Talking to my regular doctor and also to my endocrinologist the best solution would to be to remove the tumor from my pituitary gland. FREAK OUT! Yep! Brain surgery!!! Holy Shit! This little tumor that has been reeking havoc all over my body needed to be removed from my brain (or at least the base of my brain which is where your pituitary gland is found). So from March until June I have been focusing on getting my mind set that I have to have surgery to remove this tumor. I kept saying to myself "That is what was best for me, I had to do it, surgery was going to be a good thing!" Well of course when it comes to hospitals and any other medical type situations, it takes forever and a day to get things done. So After I talked to the Endocrinologist I had scheduled a time to see a Neurologist. I went in to see this new doctor and he explained the type of tumor that I had, the size, and where it was found in my pituitary gland. However, I also needed to go and see an ENT surgeon because it was going to take 2 doctors to open me up, take out the tumor, and close me back up. To remove a tumor from your pituitary gland the type of surgery performed is endoscopic which is through your nose. Sounds like fun right?!? The ENT is the guy who guides the neurosurgeon to where the tumor is. The neurosurgeon takes out the tumor and the the ENT makes sure everything that needs to be cleaned up and put back together again is done. Well scheduling appointments with doctors takes forever but luckily my nuero doc was able to help pull strings to get my mid July appointment moved earlier in June so that I could get the surgery done during the summer. I am a teacher and I wanted time to rest, relax, and heal. I know how I felt during the school year with all of the symptoms that I had to deal with I wanted to be sure that I could rest without worry! So needless to say I have had a crappy, boring summer!! My surgery was scheduled for June 27th. I had it on my calendar, was getting ready and prepared for it, had made plans for who was taking care of my dogs, made sure all bills were paid, figured out who would be taking care of me, and made sure my house was clean because I knew I'd be having A LOT of guests!
After surgery was planned and we settled on a date, so many ideas and thoughts went running crazy in my mind. What if the doctor accidentally slipped and I turned into a vegetable? What if the surgery didn't work and I still had all the symptoms that I was suffering from? Filling out a Living Will was not something I thought I'd be doing at such a young age. All the responsibility that I had I needed to make sure was taken care of. This was crazy!! Well the Tuesday before surgery my endocrinologist called and wanted to schedule an appointment that coming Friday. I was totally confused!!! I said "Sure....but I might be in a comatose state due to the fact that I was going to be having brain surgery the day before." Stunned the lady who had called me said she would let my endocrinologist know and that he would get back to me. Well of course my endocrinologist got back to me!!! The night before surgery he got back to me! He stated that he wanted to do further testing to make sure that having surgery to remove the tumor was needed. He was not sure that I truly had Cushing's Disease. What the hell? Are you kidding me? I go to see you.....you tell me I have Cushing's Disease.....you state that surgery would be the best option.....and NOW you call the night before surgery to tell me you don't think this is a good idea?!? Well he decided to call my regular doctor and consult with a third doctor to get their opinions. In collaboration all together they decided that I should continue with the surgery for the next day. So there it is.......a decision had been made.....I was going to have the surgery and life was going to get better!
HERE COMES THE MAJOR TWIST IN MY STORY!!............
Well of course the night before I was not able to sleep very well. Would you be able to sleep knowing that you were about to have brain surgery? I didn't know what my future would hold or if I'd have a future after that day. When you go into have surgery your not allowed to eat after midnight the night before. I don't think I was able to eat the entire day before! Before I knew it, 4:30am had come around and it was time for me to get up, take a shower, get my stuff together, and wait for my dad to come and pick me up for surgery. It was the longest ride ever to the hospital and I really didn't have much to say! When we got to the hospital my step-mom dropped my dad and I off and we headed into surgery to check in. It was very quiet and kind of scary but I checked-in and we sat down and waited to be called. As we were sitting there, I of course began to cry (which I hate to do) and tried to keep it all together. Brain surgery, Brain surgery, Brain surgery.....that is all that kept running through my head! But I also was trying to remind myself how this was going to be a good thing and that my quality of life was going to be better!! Well my name was called and I was getting ready to go back into surgery when all of the sudden I saw my endocrinologist! My first thought....what the hell? Why is my endocrinologist here? He is not the one who is performing the surgery! I walked up to the counter and my endocrinologist asked if I would step into a room with him. What was I suppose to say? No...cut my brain open!?! SO of course I said yes. He went and got my dad and step-mom then sat us down in a little room to discuss the situation. He stated that he couldn't sleep that night and really wanted to do more tests to see if it truly is Cushing's Disease. We discussed what all I'd have to do for further testing and what we would do with the results. Well let me just say.....it just got even more confusing and no one was able to give me a direct answer to what is or was going on. we still know that there is a tumor in my pituitary gland but it maybe on the down wave of Cushing's (meaning it would not be necessary for me to have surgery). I asked that if I didn't want to do further testing and wanted to continue with the surgery to remove the tumor would that be possible? Well by that time my neurologist had come in and stated that he cancelled the surgery. That gave me my answer......so further testing it was!
I spent an entire week going back and forth to the hospital doing blood work and urine samples (the worst test EVER to have to do is a 24 hour urine sample for 7 straight days!!!). I felt like I was grounded and couldn't go out to play!! Sorry if that is too much information! Well I did my testing and of course the test results have all come back in the average/normal range. Again, what does this mean? This means that I currently do not have Cushing's Disease because I am not secreting extra cortisol and ACTH levels. However, it could come back. Is there a way for me to make sure it doesn't come back? NO! Is there anything I can do to prevent it from secreting again? NO! Are my questions answered and problems solved? NO! Because of the time I was suffering from Cushing's I believe I developed Osteoporosis! However, because I'm not showing sign's of Cushing's my doctors think the osteoporosis could have developed from some other problem! My doctor's are just not sure! As my regular doctor stated.....I am an anomaly. What's new?!? I've always known that I was weird! Now I've been tested and have proof!!
Well to make a long story short.......I am not going to be having surgery anytime soon. We are going to keep an eye on the tumor to make sure that it is not growing! We are also going to have to continue testing to check and make sure the Cushing's has not returned. I am recovering from most of the symptoms that I was suffering from during the past year. The only symptoms that I continue to struggle with are the weakness in my legs and the pain in my lower body! From everything that I have read.....Cushing's has a very slow recovery process! Which of course is very frustrating for me!! Like I stated before, I am a very impatient person! I like to be able to get things done and get them done in a timely manner! Sitting on my butt watching the world go by is not my idea of fun!
SO......I still have the goal of running the Disney Princess Half Marathon! That is something that I do not want to give up on!! I hope to achieve that goal in February 2015. Even though my body is still fighting me and I'm very sore, I have begun to slowly walk and take things one step at a time (HA! no pun intended). I have signed up for a 5K at the beginning of September. However, it is a virtual 5K and I can run/walk it at my own pace! More than likely walk! This just gives me an achievable goal and something to look forward to. YES.....I even get a medal!!
I want to thank EVERYONE who has been so concerned about me and my health! One major lesson that I have learned going through all of this is what truly great people I have in my life! God has given me so much and I am feeling very lucky and blessed! So if you still want to continue to know what is going on with my Journey to the Disney Princess Half Marathon, please stay posted to this blog. I am not sure when I will be writing updates here but it is a way for me to let everyone know what is going on without repeating myself over and over and over again! This story has not ended because my Journey has only begun!!!
Okay my kooky, funky, soul singing friends....sing it with me!! Don't Stop Believin! Hold on to that Feeling!!!
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