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Hey everyone, I’m sorry I haven’t written a health update in a while (here’s the last one). There has been a lot of little stuff happening, but no major news yet, and I’ve been feeling pretty blue and not wanting to share as much.
For the most part, I’ve kept a pretty positive attitude through this entire health crisis I’m going through. I’m human, though, and I have had my moments where I’ve completely melted down. And only recently have I started to feel down.
Some of that is the frustration of being so weak and unable to live my life on my terms for so long now. I’m sure another part of it is that we’ve discovered I have Vitamin D deficiency.
What the Doctors are Saying
I have very low vitamin D levels. Depending upon who you talk to, under either 30 or 40 is considered low. My level is 19. It was at 29 four-years ago, so it’s dropped a lot.
I’m currently taking a high dose vitamin D supplement prescribed by the doctor. It’s not easy to get a lot of sunshine during the winter months in the mountains, so I’ll definitely be supplementing all winter to get my levels up. I’m also considering getting a Light Therapy Lamp.
We got my heavy metal test results back a few weeks ago from when I was in the hospital. The results showed a significantly elevated arsenic level (primarily organic arsenic). Lead and mercury were also elevated, but none of the doctors we’ve talked to batted an eye at those levels.
The local doctor tested both my blood and Brian’s blood for arsenic and it was negative (Brian’s level was higher than mine), so it’s not something either of us are being exposed to now (arsenic clears quickly from your blood, so only a current exposure will show in blood). That is awesome news because it means that it’s not something in our house causing it and, therefore, it can’t be making our kids sick too. That was a huge relief.
This week, we’ll be re-testing both mine and Brian’s urine to see if my arsenic levels were artificially elevated from eating seafood in the hospital and taking iodine supplements prescribed by the functional medicine doctor for my thyroid.
If it comes back with elevated arsenic levels again, it means it is caused something I was exposed to a long time ago. It could have come from something as simple as inhaling sawdust as a child, for example (my Dad is a carpenter and I was around a lot of sawdust). There are many ways you can be exposed to it as a child and have it persist in your system.
I’m crossing my fingers that it was an artificial elevation and it’ll come back normal this time. I did eat fish in the hospital a couple days before the test, so I’m hopeful it’ll come back clear.
I also got some stool culture results back that showed bacteria called Citrobacter Werkmanii and Citrobacter Youngae. There’s not much information about them online, so I don’t have much to share other than my primary and the GI specialist weren’t concerned.
I was basically told that it’s probably not the cause of my weight loss, but if the other GI studies don’t show anything, they’ll probably treat for it. Interesting approach, but it makes sense.
I’m scheduled to have the Hydrogen Breath Test to see if I have SIBO (small intestinal bacterial overgrowth) next week. I can’t take antibiotics for 30 days before the test, so they can’t treat for it just yet anyhow.
The first week in December, I’m also scheduled to have a colonoscopy and endoscopy with biopsies. I’m pretty nervous about these procedures, but I’m hopeful that they’ll give us the answers we’re desperate for.
My follow up appointment with the GI Specialist is for December 21, so we’re hopeful that we’ll have answers and a healing plan in place before Christmas. If you are the praying type, we’d love prayers for this to be true.
How Am I Feeling?
I’m blue. I’m definitely blue. More blue than I’ve been since all of this started.
I haven’t been able to do the things I want to do and live on my terms for almost 5 months now. It’s crazy and it’s starting to get to me. I’m a very independent person, so being so dependent on others has been trying for me.
I really don’t know what I’d do without Brian. He drives me everywhere, handles my half of the housework and parenting, helps with the blog and does every other little thing that needs to be handled.
If he wasn’t here to get me to eat 5,000 calories when my weight dropped below 100 pounds, I’m not sure if I’d be alive right now. There have been plenty of moments where I felt like I might not make it through this. I even went so far as sending Brian information on donating my body to research and how to collect my Social Security.
On a more positive note, physically, I’m doing a lot more now that we fixed my cervicogenic headaches with chiropractic and physical therapy. I’m up out of bed more. I can help with things around the house here and there. And I’ve been doing some crafts. I’m sore and achy all the time, but at least I don’t feel like I’m being stabbed in the head with an ice pick 24 hours a day anymore.
I have a bit more energy. I can sit up for longer periods of time. I’ve even made it through an entire movie with the family a few nights in a row.
However, I’m super weak. Some days I’m so weak, my legs shake when I walk on them. My muscles feel more like noodles most of the time.
I’m doing the exercises prescribed by physical therapy my physical therapist and I’m up doing more around the house, but the weakness still isn’t improving much. I’ve resigned myself to the fact that it’s not going to get better until we can figure out what the issue is and start on fixing it.
I can exercise all I want and eat all of the food in the house, but with my body working against me the way it is right now, I just can’t seem to make enough progress. I’m eating 2,500-3.000 calories most days and my weight is hanging steady at 110-111 pounds, depending on the day. It’s frustrating, but I’ve accepted it.
I can feel how weary the girls are getting with me being sick too. They feel like I’m never going to get better and it absolutely breaks my heart. I’m so happy they have snowboarding right now to give them a distraction from my health.
You think you have an appreciation for life, and then you believe you’re going to die. That changes how you look at everything. I’ll be writing more about that soon, but for now, know that being this sick rocks the way you look at life.