The most recent health journey.
Alright. So to pick up from yesterday.
So I had just moved back to the midwest and was already not feeling well, but thought hmm maybe all I needed was a change of scenery. And though it was amazing to be near family again and in the place that felt like home, it was not enough to “cure” me.
My dizziness started to get so much worse and I started to get really intense and bad heart palpitations.
One Saturday I will never forget, I woke up after a night of no sleep because I was literally having body shakes and tremors and heart palpitations. I thought I was just dehydrated so decided to drink some water and that did not help. I tried to eat some food, which sort of help but not really. I almost called 911 for myself for the first time in my life. However, I just pushed forward and told myself it would be better the next day. Which it was, but only slightly.
That week, I couldn’t shake the feeling that something was very wrong and by the end of the week I stopped taking my antidepressants (under the supervision of my doctor – don’t worry, I’m not off the rails). That only slightly helped with the heart palpitations but I will still feeling very sick. I then sought out help from an urgent care, thinking I must have a sinus infection. I then started antibiotics and the next day my mom arrived in town for Thanksgiving week. I was excited and looking forward to being surrounded by even more family but that night, I had another night of shaking and tremors and disorientation. I knew it was time to go to the emergency room.
My mom drove me to the ER the next day and they gave me fluids and potassium, since I was very low on that and ended up sending me home a few hours later. That is when the worst illness to date started to happen.
I started to have what I thought was just a stomach bug with more (TMI sorry) diarrhea than I had ever experienced before. I was shaking and crying and having tremors and couldn’t stop using the bathroom. I could barely stay awake from the constant fatigue and couldn’t even think straight. I wanted so badly to attend all of the family events that week but could barely make it out of my bed.
This lasted for about 4 weeks. Where I went to the emergency room via ambulance or family member 5 more times. I lost 10 pounds and could not take care of myself or barely my animals. I have never been so sick and just lost on what was going on. One of those hospital visits resulted in me having an extended 2 night 3 day stay where the hospital thought I was becoming septic. I wasn’t. But honestly, I was just relieved to finally be in a place where they would give me constant IV fluids and take care of me during this very scary time.
I eventually made it out of this and by then it was Christmas time. Again, I was excited and looking forward to more family time. However, my body had another idea.
I could barely stay awake and was having very intense stomach pains and fevers and just overall I was very unwell. That is when my family and I decided it would be best for me to move home. To finally get some much needed help in taking care of me.
I am not going to lie. This made me feel like a failure. I had been independent for so long and took pride in that. The logical side of my brain knew that this is what I needed. I needed help for this most recent illness which I thought was going to be the end of me and also to finally face the ongoing symptoms I have ignored for awhile. It was time.
And something you’ll learn about me, through these diaries or whatever they are, is that even though I can find myself in the darkness just like any other person. I try to see the positive in situations, even if it takes me a minute to find it.
I think my body knew that I was never going to get the help that I needed. That I would continue to ignore my rapidly declining help. So even though this illness was intense and scary it forced me to face what I needed to face. Doctors and help.
I’ll try to summarize the next few months of my life after moving back home…
What I have done to help …
- I have now seen the following specialists – gastroenterologist, primary care physician, gynecologist, dentist, ophthalmologist, cardiologist, otolaryngologist, naturopathic doctor, physical therapist, neurologist, dietician, psychiatrist, therapist, and endocrinologist.
- I have had the following procedures – colonoscopy, endoscopy, halter monitor, brain MRI, brain CT, abdominal CT, bloodwork, chest x-ray,EKG, fecal testing, and a 72 hour fast.
- I have now visited the emergency room 11 times and have stayed there twice both for 2 nights and 3 days.
- I have tried a variety of diets (AIP and low FODMAP). I have taken supplements prescribed by my naturopathic doctor. I have taken anti-anxiety and anti-depressant medication prescribed by my psychiatrist.
- And I’ve lost about 30 pounds in the last 6 months, some from improving my diet, but mostly from the sheer amount diarrhea (TMI I know) that I have experienced but has thankfully slowed down since I’ve been treated for some infections. Don’t worry, it was all weight that needed to be skimmed off anyways.
What I found out so far …
- I had both c. difficile and SIBO (small intestinal bacterial overgrowth) which have both been treated through multiple rounds of antibiotics.
- I had 2 colon polyps, one being 9 mm large, that were both removed.
- I have hypoglycemia which is being managed and monitored and honestly had some slight improvement after treating SIBO.
What I still have in the future …
- I will be going to the Cleveland Clinic in September to see a vestibular neurologist, a neuromuscular neurologist, and an endocrinologist. I do have hope in this clinic, since they look for the weird and the rare, that they will be able to figure out what is wrong.
- I will be seeing a colorectal surgeon in July. And going to physical therapy at a concussion clinic in August.
- I will be getting an anorectal manometry exam done and a MR enterography and potentially a MRI with defecography. *These are definitely not the most glamorous exams but I can’t wait for the stories to come from them. LOL*
- And hopefully I will finally be able to see a rheumatologist. Because if it isn’t something obvious, it could be an autoimmune disease. Or so I’ve been told.
So even though my digestive system will never be the same (I’m just being dramatic) and I’ve cried on the phone with more doctors and insurance representatives than I’d like to admit, I can look back and see how much I’ve accomplished so far and what I have to look forward to.
I am exhausted but happier than I’ve been in quite awhile. I am finally taking care of myself and I am so proud of myself and thankful to my family and friends who have supported me along the way. Also my therapist, I could not have done this without her. And although I do not have the answers for whatever is plaguing me, I know that I will someday.
(Picture is from Gooseberry Falls State Park, Minnesota, USA)