Tomorrow is the Big day! We have to be at the hospital at 5:15 and surgery is scheduled to bring at 7:15. I have already been so very humbled by the outpouring of love and support. I am so grateful for each and every person, for each and every kind word and prayer.
I'm starting to get nervous, surprisingly not about being cut open, but about recovery. I'm anxious about completely missing out on life for the next little while so my body can heal. I know it's worth it, don't get me wrong! For the past couple of years I have felt like an observer of my life, just watching everything from the sidelines instead of participating and I want to participate again! I'm ready for this!
Any and all prayers and positive thoughts tomorrow and in the coming weeks would be very welcomed. Prayers for peace for my daughters and the rest of my family too!
Wednesday, October 4, 2017
Tuesday, October 3, 2017
Always causing trouble
I always feel sorry for whoever is assigned to drawing my blood or starting my IV, my veins are awful! If there's a story out there about difficult veins, I promise I can relate! Today it took three tries and two nurses, definitely not a record for me though 🙄
Ever Growing List
I've had two pre-op appointments to complete all the blood work and testing required. It's amazing everything new that shows up with every test. I know some of it is having tests completed by different people so they are interpreted differently, but the list still keeps getting longer. As of today, here is the list of issues/diagnosis I have:
PCOS
PCOS
Celiac disease
Bruit in right carotid artery
Chronic Fatigue
MALS
POTS
Intestinal ischemia
Deteriorating spine
Large ovarian cyst
Sinus cyst
Bladder: incidental ureterocele
Liver enzymes
Gastroparisis
Sinus bradycardia
Right Ventricular Conduction delay
Hoping and praying surgery will help my body regain its ability to fight these things off and, at the least, keep them from getting worse!
Surgery is in about 36 hours! Hip hip hooray!
Tuesday, September 26, 2017
Figuring out why I felt awful
When it all began...
Last summer, summer of 2016, I noticed the exhausted feeling wasn't leaving. I knew I'd had it for months, but had attributed it to our crazy schedules, traveling with my daughters volleyball team, a spider bite, lack of sleep, etc. About half way through the summer I knew it shouldn't be like that still. Summers are hectic and hot, but they're also a time when i generally get close to eight hours of sleep, sometimes squeeze in a nap, and enjoy chillin with my girls when the opportunity presents itself. I wasn't able to workout in the mornings anymore, I would typically put forth the effort of waking up and going to my garage gym, but lifting anything was like using spaghetti noodles to lift a rock...wasn't gonna happen. I really focused on my diet, thinking surely I was causing this lack of energy. I was already eating super healthy and sleeping all I could, so this didn't help at all. I thought maybe it was my reduced level of exercise that was causing my weakness and exhaustion, so I did everything in my power to push through, but the fear of collapsing or dropping weights or passing out was far too great. Now I did what we all do in our day and time, I hit up google for some help and decided it was my thyroid. I was noticing some dizzy spells, i was "standing up too fast" every time I stood, getting shaky for no reason, and becoming more exhausted by the day. (when I say exhausted, I mean like flu exhausted...every movement takes serious effort, sometimes even breathing).
I finally caved in and went to the doctor. I didn't have a primary care physician, so getting in took a while, but she was so worth it! She ordered every single blood test on the books! Everything came back in the normal range. So we visited more about what was going on with me. She officially diagnosed me with Chronic Fatigue Syndrome. Ugh! I hate that diagnosis! But at the same time i felt a little more justified in feeling so exhausted. We went through several more rounds of tests, looking for blood flow issues. Many things were found during this process including a bruit in my carotid artery and a cyst in my sinus cavity.
After the third CT scan I got a phone call telling me I have MALS. This started a whole new round of conversations! I had assumed all of my stomach pain and constant nausea was due to my Celiac Disease! Nope, none of it! Not after eating clean for so many years! I was thrilled to know it wasn't my doing making me feel so crummy! I was excited to have a diagnosis that was "treatable" and very anxious to receive treatment. This was November 2016 and I never dreamed of the struggle the next ten months would bring with it...
Last summer, summer of 2016, I noticed the exhausted feeling wasn't leaving. I knew I'd had it for months, but had attributed it to our crazy schedules, traveling with my daughters volleyball team, a spider bite, lack of sleep, etc. About half way through the summer I knew it shouldn't be like that still. Summers are hectic and hot, but they're also a time when i generally get close to eight hours of sleep, sometimes squeeze in a nap, and enjoy chillin with my girls when the opportunity presents itself. I wasn't able to workout in the mornings anymore, I would typically put forth the effort of waking up and going to my garage gym, but lifting anything was like using spaghetti noodles to lift a rock...wasn't gonna happen. I really focused on my diet, thinking surely I was causing this lack of energy. I was already eating super healthy and sleeping all I could, so this didn't help at all. I thought maybe it was my reduced level of exercise that was causing my weakness and exhaustion, so I did everything in my power to push through, but the fear of collapsing or dropping weights or passing out was far too great. Now I did what we all do in our day and time, I hit up google for some help and decided it was my thyroid. I was noticing some dizzy spells, i was "standing up too fast" every time I stood, getting shaky for no reason, and becoming more exhausted by the day. (when I say exhausted, I mean like flu exhausted...every movement takes serious effort, sometimes even breathing).
I finally caved in and went to the doctor. I didn't have a primary care physician, so getting in took a while, but she was so worth it! She ordered every single blood test on the books! Everything came back in the normal range. So we visited more about what was going on with me. She officially diagnosed me with Chronic Fatigue Syndrome. Ugh! I hate that diagnosis! But at the same time i felt a little more justified in feeling so exhausted. We went through several more rounds of tests, looking for blood flow issues. Many things were found during this process including a bruit in my carotid artery and a cyst in my sinus cavity.
After the third CT scan I got a phone call telling me I have MALS. This started a whole new round of conversations! I had assumed all of my stomach pain and constant nausea was due to my Celiac Disease! Nope, none of it! Not after eating clean for so many years! I was thrilled to know it wasn't my doing making me feel so crummy! I was excited to have a diagnosis that was "treatable" and very anxious to receive treatment. This was November 2016 and I never dreamed of the struggle the next ten months would bring with it...
So...here we go! I've had so many people ask questions about what MALS is and many more asked to be kept in the loop as I undergo surgery and move through recovery to start life 2.0. I thought this would be an easy way for people to follow along on the journey with me and maybe help other people who will also enjoy this journey.
The story up to today is a long one, so I will share a little at a time.
Last November I was diagnosed with Median Arcuate Ligament Syndrome (which also goes by several other names, including: Celiac Artery Compression Syndrome, Celiac Axis Syndrome, Celiac Trunk Compression, and Dunbar Syndrome). The wikipedia definition says: is a condition characterized by abdominal pain attributed to compression of the celiac artery and possibly the celiac ganglia by the median arcuate ligament. What this means in my words is the ligament which sits just below the diaphragm sits too low in the body and squeezes the Celiac Artery, reducing blood flow to the organs it supplies (liver, stomach, abdominal esophagus, spleen and the superior half of both the duodenum and the pancreas) and squeezing the Celiac Ganglia of nerves.
Next Tuesday, October 3rd, I will under go surgery to address this issue. It will be an open celiac artery reconstruction with ligament division and nerve removal...which means they will cut me open, cut away the ligament, remove the nerves and address any issues with the artery (stent, bypass, or leave it alone if it seems to be recovering on its own). I've been told the surgery recovery is similar to open heart surgery, so it's intense. I've also been advised it will take my body around a year to fully heal. The instant returned blood flow to all of these organs will be a shock and they will all have to work their way through it. Each of the organs can effect the way the others work, so they will all have to learn to work together again as well.
Most of what I've learned about MALS has been through facebook groups of those who also have been diagnosed with MALS or their family members. They have shared links to studies, uploaded documents, shared experiences, been brutally honest and open. Many parts of MALS, as well as steps in the healing process, typically fall under the TMI category, but we share them anyway because it helps. I have always been a very private person, but I will strive to let down my walls through this process and share things here I normally wouldn't discuss with people. Think about what your digestive tract does, think about how it behaves with you're sick...MALS patients are typically experiencing a majority of those symptoms on a daily basis. It's not pretty y'all! So, if you plan to follow along on my journey please brace yourself for the most delicate version of the whole story I can come up with.
I believe everything happens for a reason. I'm hoping the reason I'm going through all of this is to help at least one person on their journey.
Thanks for following along!
The story up to today is a long one, so I will share a little at a time.
Last November I was diagnosed with Median Arcuate Ligament Syndrome (which also goes by several other names, including: Celiac Artery Compression Syndrome, Celiac Axis Syndrome, Celiac Trunk Compression, and Dunbar Syndrome). The wikipedia definition says: is a condition characterized by abdominal pain attributed to compression of the celiac artery and possibly the celiac ganglia by the median arcuate ligament. What this means in my words is the ligament which sits just below the diaphragm sits too low in the body and squeezes the Celiac Artery, reducing blood flow to the organs it supplies (liver, stomach, abdominal esophagus, spleen and the superior half of both the duodenum and the pancreas) and squeezing the Celiac Ganglia of nerves.
Next Tuesday, October 3rd, I will under go surgery to address this issue. It will be an open celiac artery reconstruction with ligament division and nerve removal...which means they will cut me open, cut away the ligament, remove the nerves and address any issues with the artery (stent, bypass, or leave it alone if it seems to be recovering on its own). I've been told the surgery recovery is similar to open heart surgery, so it's intense. I've also been advised it will take my body around a year to fully heal. The instant returned blood flow to all of these organs will be a shock and they will all have to work their way through it. Each of the organs can effect the way the others work, so they will all have to learn to work together again as well.
Most of what I've learned about MALS has been through facebook groups of those who also have been diagnosed with MALS or their family members. They have shared links to studies, uploaded documents, shared experiences, been brutally honest and open. Many parts of MALS, as well as steps in the healing process, typically fall under the TMI category, but we share them anyway because it helps. I have always been a very private person, but I will strive to let down my walls through this process and share things here I normally wouldn't discuss with people. Think about what your digestive tract does, think about how it behaves with you're sick...MALS patients are typically experiencing a majority of those symptoms on a daily basis. It's not pretty y'all! So, if you plan to follow along on my journey please brace yourself for the most delicate version of the whole story I can come up with.
I believe everything happens for a reason. I'm hoping the reason I'm going through all of this is to help at least one person on their journey.
Thanks for following along!
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