I went to 48 doctors appointments in 2013
I had 3 abdominal MRI's
One MRI of my Arm
Four Ultrasounds of my Liver
One DEXA scan of my bones
Three X-Ray's of my Arm
One Ultrasound of my Arm
Five CT scans of my skull
One CT scan of my neck
Two endoscopies
One X-Ray of my Abdomen
One X-Ray of my Ribs
Three CT Scans of my Abdomen
One Tilt Table test
An ultrasound of my Thyroid
One EEG
Six EKG's
One Echocardiogram
One Bubble test of my heart valve
I had a dozen visits to the ER
and Spent six days in the hospital
All I can say is Thank God for Insurance!
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Wednesday, January 1, 2014
Monday, December 30, 2013
The one where you realize you're standing on yet another trap door
I miss the old you. I miss her so much sometimes it's palpable. It's a lot of the big things. It's feeling good, it's having energy, it's having a memory that works. It's also so many little things. My boys don't get the option of home lunches this year because they have the new me who can't function on a level to print out the lunch menu, find out what days they don't like, and then plan out home lunches accordingly You know, the old me. My boys hear a lot of "maybe tomorrow's" and "I'm so sorry I forgot's". Gavin was the only child who didn't turn in a recipe for the class recipe book they were making as a gift for parents. This was because I was in liver failure and John play's the best me he can, but it's sub par at best. Keaton was the only child who didn't wear blue for frozen day at school because I didn't remind him. My boys no longer expect rides to and from school because they never know how mom will feel. Ollie has adapted to our morning ritual of laying in bed with frozen waffles and watching shows. This is not me. I would never allow this woman near my children. Yet here she is day in and out allowed to make mistakes I would never make. I hate her. I miss me. I am so sorry my boys!
December has been hard, Christmas has been hard. My life is usually one lead up to Christmas and this year I spent the first three weeks of December in bed barely able to move. That meant rushing to fit in all the things I normally do with my family or just letting them go. The old me would never have dropped the ball on such important traditions. Accepting that it is literally out of my hands to do more than what I did was hard. I'm lucky to have my husband who elmers glued a gingerbread house together with my 7 year old. He watched Home Alone with them 100x's, stood in line for an hour to see Santa, and took all three to Christmas at his parents after my liver flared up. I am lucky to have an understanding sister who didn't completely lose it when she found out I wasted $250 on tickets to the Polar express because I bought non refundable tickets for the wrong day. I could have sworn I picked the right day but my brain doesn't work as well as it used to. I'm lucky to have this incredible mother in law who took a week off from her life to come and better mine. I can never repay her for all the loads of laundry and rooms she cleaned. I am lucky to have friends and neighbors who stepped in to give my family the Christmas I couldn't. Also to my friend Shanda who just keeps me sane all the time. I honestly would fall apart without you Shanda. You make me feel normal! Thank you!
I know that 2014 won't be the year that will resolve everything for me. I know I am standing on another trap door. My life is still a mess and just about to get messier. I guess my hope for 2014 is just to have some of my faith back. I'm embarrassed to say that some of my faith has been lost during this ordeal. I try to justify it with six months of doctors appointments thrice weekly, twelve emergency room visits, two hospital stays, four concussions, 2 broken ribs, one malfunctioning autonomic nervous system, one liver that isn't sure what it's doing, 30lbs of weight gain, and a whole lot of dumb ass doctors. I just wonder if God still has his hand on me. Some days I'm so scared that he's gone and I'm left here alone. Which would suck giant balls because I need my God now more than ever. For 2014 I want to work on trusting that he's still with me and that this is all going to work out. A new me will come from this horror and sorrow and she will be a ninja with mad karate skills and a working body. She'll remember to sign permission slips and promises she makes her favorite boys. She will buy freaking capri suns so they can have home lunch any time they want, even on saturdays! She will exercise, run a marathon, and thank God for all she has been given.
So here's to 2014, may my faith in God grow ever stronger!
December has been hard, Christmas has been hard. My life is usually one lead up to Christmas and this year I spent the first three weeks of December in bed barely able to move. That meant rushing to fit in all the things I normally do with my family or just letting them go. The old me would never have dropped the ball on such important traditions. Accepting that it is literally out of my hands to do more than what I did was hard. I'm lucky to have my husband who elmers glued a gingerbread house together with my 7 year old. He watched Home Alone with them 100x's, stood in line for an hour to see Santa, and took all three to Christmas at his parents after my liver flared up. I am lucky to have an understanding sister who didn't completely lose it when she found out I wasted $250 on tickets to the Polar express because I bought non refundable tickets for the wrong day. I could have sworn I picked the right day but my brain doesn't work as well as it used to. I'm lucky to have this incredible mother in law who took a week off from her life to come and better mine. I can never repay her for all the loads of laundry and rooms she cleaned. I am lucky to have friends and neighbors who stepped in to give my family the Christmas I couldn't. Also to my friend Shanda who just keeps me sane all the time. I honestly would fall apart without you Shanda. You make me feel normal! Thank you!
I know that 2014 won't be the year that will resolve everything for me. I know I am standing on another trap door. My life is still a mess and just about to get messier. I guess my hope for 2014 is just to have some of my faith back. I'm embarrassed to say that some of my faith has been lost during this ordeal. I try to justify it with six months of doctors appointments thrice weekly, twelve emergency room visits, two hospital stays, four concussions, 2 broken ribs, one malfunctioning autonomic nervous system, one liver that isn't sure what it's doing, 30lbs of weight gain, and a whole lot of dumb ass doctors. I just wonder if God still has his hand on me. Some days I'm so scared that he's gone and I'm left here alone. Which would suck giant balls because I need my God now more than ever. For 2014 I want to work on trusting that he's still with me and that this is all going to work out. A new me will come from this horror and sorrow and she will be a ninja with mad karate skills and a working body. She'll remember to sign permission slips and promises she makes her favorite boys. She will buy freaking capri suns so they can have home lunch any time they want, even on saturdays! She will exercise, run a marathon, and thank God for all she has been given.
So here's to 2014, may my faith in God grow ever stronger!
The one where I lost my gallbladder, thyroid, and my Gluten.
I made a promise to my lovely John that I while stuck in bed I would find something to do that wasn't buying things from Kohls.com. Have you ever bought anything from Kohls? I just discovered this place and holy amazeballs it's my favorite. Boxes keep shows up at the door by the dozens and once my sister Kara goes home to Texas now that the holiday is over there is no way he is going to believe they are hers. So, I've decided to take up blogging. I think it will be good for me anyway. I can chronicle my journey through this screwed up medical world as they try to figure out why my body doesn't function normally. So here we go!
It's hard to summarize 2013 for those who don't hang on my every word on facebook. It will take me a little while to catch you up so bare with me. I'll give you a little piece of the story now.
I guess things started before 2013. They started in March 2012 when I was diagnosed with Hashimotos thyroid and started on thyroid medication. I also started on a weight loss plan through weight watchers and from March 2012-May 2013 I lost 105lbs. Pretty awesome right? Now if I hadn't gained 30...okay 35lbs back. I'm not sure if the rapid weight loss played into anything that followed but it is part of the story. I was the healthiest I had been in my life.
In July 2012 I started having digestion issues. Food would sit in my stomach for 24 hours plus. I had pains under my ribs and just felt sick to my stomach all the time. After visiting my GP she ordered an ultrasound of my gallbladder. The ultrasound showed no stones, but my blood work came back with elevated ALT, AST, and TBILI. I was then ordered to have a Hida Scan to see how my gallbladder was functioning. The results of this showed my gallbladder was pretty much in failure and needed to come out. On Aug 9th I had my Gallbladder out and it was pretty uneventful. That was until a week later when unbeknownst to me "gravel" (the start of stones) had clogged a bile duct. I guess during my surgery the surgeon found my gallbladder was covered in this gravel and as it "sucked out" the gravel fell down into my ducts. I was never told that there was a risk of a clogged duct though. Thankfully the duct cleared itself so I was just in a hell of a lot of pain and so nauseated I couldn't keep anything down for a week because of the loose bile in my abdomen.
Soon after I found out I needed my gallbladder out I learned I had a dominant nodule on the right lobe of my thyroid. After a biopsy was performed it came back that the cells were a bit odd but not cancerous. Great news! Two weeks later the ENT calls me back to tell me the size of the nodule was 3.8cm and they could not biopsy to the center of it, so the right lobe needs to come out. So the same day I scheduled my gallbladder surgery I scheduled my thyroid surgery for 2 months later.
The thyroid surgery was a little more involved. I had to stay a night in the hospital and they actually cut into my neck. The recovery was a lot longer physically and SO much longer emotionally. No one tells you that your thyroid controls so many hormones. I was a hot mess for months afterwards. I was crying for no reason, weight was just falling off of me for no reason, and I was miserable. Finally I got my drugs worked out. Some Prozac, a nice higher dose of Levothyroxine, and a dash of Liothyronine got me back to my old chipper self.
During that time I started having some new bizarre symptoms. I'd get these sharp pains that would almost make me pass out under the right side of my ribs. It was like the gallbladder pains but 50x's worse. Every time I would have them I'd go into the doctor and they'd take my blood and my LFT (Liver Function Blood test) would always be elevated. The earlier I went in (meaning the closer I went in to when the pain started) the higher the numbers would be. When I'd follow up in a few days they'd tapper down and then eventually return to normal.
To make a long story short here is a list of things I was diagnosed and treated for because of these high LFT's and the pain:
H. Pyloi
C. Difficile twice
Irritable Bowel
Potassium Deficiency
Peptic Ulcer, Twice
Gastroparesis
Reflux
Chronic Gastritis
In January of 2013 I had an Enoscopy that did confirm I had Chronic Gastritis and I was told not to use NSAID's anymore. I also had blunting of my villi which is consistent with Celiacs disease or a Malabsorption disorder. They took a biopsy and after it came back I was misdiagnosed with Celiacs Disease and ate Gluten Free for 6 months.
After the misdiagnosis I was diagnosed with an iron deficiency, a Vitamin D deficiency, and a Calcium Deficiency. I was ordered to have a DEXA scan to check my bone density and diagnosed with borderline osteopenia. To this day we still aren't sure what is causing the malabsorption disease.
It turns out the Gastro's PA misread the pathology report and my GP was the one who caught the mistake. After another Endoscopy, biopsy, two celiac blood tests, a wheat allergy (along with other allergens), and a skin scratch test for wheat allergy. They all came back negative for celiacs. While I was extremely relieved to have my Gluten back I was also beyond pissed that I had such an incompetent doctor, although this became a trend among most of my doctors. I've learned the hard way that good doctors are hard to find.
So I don't have Celiacs. What next? Nothing! The PA said we were back to irritable bowel and sent me on my way. He was unwilling to consider trying or doing anything else. So I made an appointment with a different Gastro in the practice per my GP's orders (she can kick ass and take names when she wants to). But now I am just getting WAY ahead of myself.
I will leave this as part one of the Mystery illness that should be turned into a TV show but instead is a blog because it turns out you have to have a solved mystery illness to be on one of those shows. I guess my stardom will just have to wait!
It's hard to summarize 2013 for those who don't hang on my every word on facebook. It will take me a little while to catch you up so bare with me. I'll give you a little piece of the story now.
I guess things started before 2013. They started in March 2012 when I was diagnosed with Hashimotos thyroid and started on thyroid medication. I also started on a weight loss plan through weight watchers and from March 2012-May 2013 I lost 105lbs. Pretty awesome right? Now if I hadn't gained 30...okay 35lbs back. I'm not sure if the rapid weight loss played into anything that followed but it is part of the story. I was the healthiest I had been in my life.
In July 2012 I started having digestion issues. Food would sit in my stomach for 24 hours plus. I had pains under my ribs and just felt sick to my stomach all the time. After visiting my GP she ordered an ultrasound of my gallbladder. The ultrasound showed no stones, but my blood work came back with elevated ALT, AST, and TBILI. I was then ordered to have a Hida Scan to see how my gallbladder was functioning. The results of this showed my gallbladder was pretty much in failure and needed to come out. On Aug 9th I had my Gallbladder out and it was pretty uneventful. That was until a week later when unbeknownst to me "gravel" (the start of stones) had clogged a bile duct. I guess during my surgery the surgeon found my gallbladder was covered in this gravel and as it "sucked out" the gravel fell down into my ducts. I was never told that there was a risk of a clogged duct though. Thankfully the duct cleared itself so I was just in a hell of a lot of pain and so nauseated I couldn't keep anything down for a week because of the loose bile in my abdomen.
Soon after I found out I needed my gallbladder out I learned I had a dominant nodule on the right lobe of my thyroid. After a biopsy was performed it came back that the cells were a bit odd but not cancerous. Great news! Two weeks later the ENT calls me back to tell me the size of the nodule was 3.8cm and they could not biopsy to the center of it, so the right lobe needs to come out. So the same day I scheduled my gallbladder surgery I scheduled my thyroid surgery for 2 months later.
The thyroid surgery was a little more involved. I had to stay a night in the hospital and they actually cut into my neck. The recovery was a lot longer physically and SO much longer emotionally. No one tells you that your thyroid controls so many hormones. I was a hot mess for months afterwards. I was crying for no reason, weight was just falling off of me for no reason, and I was miserable. Finally I got my drugs worked out. Some Prozac, a nice higher dose of Levothyroxine, and a dash of Liothyronine got me back to my old chipper self.
During that time I started having some new bizarre symptoms. I'd get these sharp pains that would almost make me pass out under the right side of my ribs. It was like the gallbladder pains but 50x's worse. Every time I would have them I'd go into the doctor and they'd take my blood and my LFT (Liver Function Blood test) would always be elevated. The earlier I went in (meaning the closer I went in to when the pain started) the higher the numbers would be. When I'd follow up in a few days they'd tapper down and then eventually return to normal.
To make a long story short here is a list of things I was diagnosed and treated for because of these high LFT's and the pain:
H. Pyloi
C. Difficile twice
Irritable Bowel
Potassium Deficiency
Peptic Ulcer, Twice
Gastroparesis
Reflux
Chronic Gastritis
In January of 2013 I had an Enoscopy that did confirm I had Chronic Gastritis and I was told not to use NSAID's anymore. I also had blunting of my villi which is consistent with Celiacs disease or a Malabsorption disorder. They took a biopsy and after it came back I was misdiagnosed with Celiacs Disease and ate Gluten Free for 6 months.
After the misdiagnosis I was diagnosed with an iron deficiency, a Vitamin D deficiency, and a Calcium Deficiency. I was ordered to have a DEXA scan to check my bone density and diagnosed with borderline osteopenia. To this day we still aren't sure what is causing the malabsorption disease.
It turns out the Gastro's PA misread the pathology report and my GP was the one who caught the mistake. After another Endoscopy, biopsy, two celiac blood tests, a wheat allergy (along with other allergens), and a skin scratch test for wheat allergy. They all came back negative for celiacs. While I was extremely relieved to have my Gluten back I was also beyond pissed that I had such an incompetent doctor, although this became a trend among most of my doctors. I've learned the hard way that good doctors are hard to find.
So I don't have Celiacs. What next? Nothing! The PA said we were back to irritable bowel and sent me on my way. He was unwilling to consider trying or doing anything else. So I made an appointment with a different Gastro in the practice per my GP's orders (she can kick ass and take names when she wants to). But now I am just getting WAY ahead of myself.
I will leave this as part one of the Mystery illness that should be turned into a TV show but instead is a blog because it turns out you have to have a solved mystery illness to be on one of those shows. I guess my stardom will just have to wait!
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