Hello! And welcome to the next part of my story. If you are looking for information on where my journey started, please do start with My Story Post #1 and read my updates in order. Otherwise, thank you for reading this edition of my story!
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Here We Go…
So by now, we’ve read about the start of my health journey with Kidney Problems, a Cholecystectomy, Ileitis, Crohn’s Disease, Endometriosis, Ovarian Cysts, Adenomyosis, Pregnancy, Hashimoto’s Disease, Fibromyalgia, Chronic Fatigue Syndrome (CFS), and Post-Partum Depression.
In addition to those I’ve mentioned, I was also diagnosed with a few additional health challenges along the way. These include Gastritis, Gastroparesis, Gastroesophageal Reflux Disease (GERD), Scoliosis, Major Depressive Disorder (Bipolar II) and Anxiety, Obsessive Compulsive Disorder (OCD), and Restless Leg Syndrome (RLS).
Most, if not all, of these conditions were diagnosed hand-in-hand with the ones I’ve already talked about. With this blog, I’m hoping to eventually be able to write about my experiences with each of these conditions individually and in more detail; however, for the sake of time, I want to move forward in sharing more about my personal autoimmune journey story.
Hormones. Hormones. Hormones. Who Knew We Had So Many Hormones?
Shortly after I was diagnosed with Hashimoto’s Disease, we also noticed that I was having significant problems with my hormone levels. Not only were my progesterone, testosterone, and other hormone levels crazy low (at first, they were so low that the lab could not give us a physical number on my bloodwork panel) but also my adrenal levels were extremely low as well. This meant that between my thyroid being super sluggish, my hormones tanking, and my adrenals now being fatigued, I was one tired mama. For years, I did not know or understand the significance of how connected these glands and hormones are in our bodies.; however, over the years, I’ve noticed that if one stops working properly, the rest can follow if the problem is not caught in time or treated properly.
During this time, I was diagnosed with Premature Ovarian Failure and Perimenopause at only 29 years of age. My OBGYN placed me on prescription natural hormone supplements from a compounding pharmacy and Adren-All, a natural adrenal support supplement. These supplements did seem to help a little but for whatever reason (and we find this reason out later), my levels would not increase. I was honestly physically taking more of a dosage than my body was actually accepting or processing so when we re-evaluated my levels again, they had not improved much at all.
Also during this time, we could not get my monthly cycles to regulate. In addition, I was starting to hemorrhage every time I actually had a cycle. This started to become a huge problem and when I found myself in the local emergency room because of these symptoms and was kept for monitoring, I had had enough. After two years of hormone replacement medications, creams, and supplements with hardly any success and now a body that was physically starting to become life-threatening, my doctors finally decided that a hysterectomy was next on my list. It didn’t matter what we tried, this ended up being our only solution.
A Hysterectomy at 31
After doctors fought with my insurance company on the medical necessity of a hysterectomy at such a young age, my surgery was finally scheduled over Christmas break in 2016. During this time, I was still teaching online high school English courses from home through a wonderful company and did not want to take short-term or long-term disability to recover from such a large ordeal. So, on December 19th of last year, any possibility of more natural children ceased to exist. I spent 2 days in the hospital with, you guessed it, problems with hemorrhaging even after surgery but finally was able to come home and recover after that.
This then brought us into what is now 2017. Even though it feels like I have spent my entire lifetime searching for answers to my medical problems and conditions, it still felt like no one could really tell me what was truly going on with my body. Since I was a child, all the doctors and specialists I had seen had all been treating the symptoms they could without actually giving me any solid reason why they were there in the first place. Every time I had an appointment, I would continually ask them their thoughts on what my root cause might be, or the main reason why my body continually seemed to be failing me. I would also ask them their thoughts on things like proper nutrition, diet, sleep, stress, and life management principles I would come across through research and/or reading; and you know the answer I received most of the time? Either a blank stare or a recommendation of some other kind of pharmaceutical or medical test that would either (1) maybe help symptoms a little if I was lucky and (2) lead to no true answers.
So, my friends, to say this year has been hard is an understatement. I came into 2017 thinking I was going to figure it all out. I was going to “fix” it. I had the mentality that it didn’t matter what I had to do, I was going to “get better”. And then I really got sick, again.
A 2017 to Remember
Now, for the past two years, I had been dealing with the worst Crohn’s Disease flare of my life. My gastroenterologist had me on not one, but two different steroidal medications to calm inflammation and attempt to place my Crohn’s Disease into remission. Unfortunately, things only continued to get worse, I started having a lot of pain, and I started having a lot of days where I could not leave my house. I tried a few different diets such as the Whole 30, Paleo, AutoImmune Protocol (AIP), the Restart Diet, the Blood Type Diet, and a Sugar Detox and none had given me symptom relief long-term. So, unfortunately (or so I thought), I had to start Humira injections in September 2017.
Also, I experienced cataracts in both of my eyes that warranted cataract surgery, another crazy symptom, and condition at a very young 31 years of age. To date, I have had a total of 6 surgeries on my eyes: 2 cataract surgeries (1 for each eye), 2 incisions to correct astigmatism, and 2 laparoscopies to remove scar tissue. During my cataract surgery, multifocal lenses were implanted into my eyes to help my decreasing vision but unfortunately, we haven’t been able to get my vision to completely come in yet. I still have to wear glasses to read but can see, for the most part, without them for any distance vision. I follow up with them in about a week or so and may have an additional LASIK procedure to look forward to going into 2018.
In 2017, I also started seeing a specific Pain Management doctor for issues I’ve had with my right leg since I was a teenager. Back in high school, I had injured my right knee while playing soccer and torn my meniscus. When the surgeon went in to repair the tear, he accidentally hit a blood vessel and was unable to successfully complete the surgery. My knee was then encased in scar tissue, I had about 6 months of recovery on crutches, and I still had a torn meniscus that had not been repaired. My original doctor moved to Florida and I was left seeing other specialists in my area that really did not want to treat me. It was during this time that I ended up in Pittsburgh, PA and saw some of the best surgeons around. I had a repeated laparoscopy 2 years after my initial injury and unfortunately, suffered nerve damage during this one. This nerve damage then resulted in 3 additional surgeries for peroneal nerve entrapment and muscle atrophy.
During my time with the pain management specialists, they concluded that I was a great candidate for a Dorsal-Root Ganglion (DRG) Stimulator. In order to apply for this, it felt like I had to jump through some hoops. First, I had to complete 6-8 weeks of physical therapy. Physical therapy was very helpful; however, nothing we did would last long-term. Because of the nerve damage and muscle atrophy, my muscles could not hold their strength so as quickly as physical therapy was over, my pain and strength returned to what it was. Then, I had to go through a nerve block trial to see if that was something that could help. The nerve block was amazing, for 3 days. The effects then wore off and I have found myself wanting to feel that relief again ever since. Also, I had multiple evaluations, a psychological evaluation, and approval from my psychologist in order to even apply for this type of treatment. Now, we are currently waiting for my insurance company to decide if this is something we could attempt to do.
On to Functional Medicine!
So, to say that I have been just a little overwhelmed this year is a bit of an understatement; however, I could not be more thankful for these experiences. Without them, I would still be listening to my traditional medical doctors and specialists, still taking what felt like a gazillion pharmaceuticals, and still moving forward in a downward direction. However, because I have experienced so much, I have been able to push myself to truly find answers and take the steps I have been fearful of taking for years. It wasn’t because I was afraid of what the outcome would be, but I was afraid of the type of financial burden I would place on my family for doing so; however, in September, I did it. I finally made it in to see a Functional Medicine team of doctors and finally, FINALLY after 25 years of being sick, felt like someone actually listened to me and is trying to figure out the root cause of my health problems.
As you are reading, please do remember that I am not a medical professional, nurse, health coach, or any other health professional of any kind. I am a patient with years of experience with autoimmune disease and will be sharing information and resources from a patient’s perspective; however, please do keep in mind that anything that I share here should not replace any medical advice you should receive from a doctor or other medical professional. Please consult with your doctor before changing anything in your routine or care. You can read more about this here.