Diagnostic Years

Diagnostic years are absolutely exhausting! 

A diagnostic year is when new symptoms pop up, or a change is made, which begins a cascading effect. Other, stable, illnesses flare-up, long-suppressed symptoms make an appearance, and my schedule is filled with appointments trying to figure everything out. It is necessary, it is incredible to be able to get the appointments I need, and it is entirely draining. 

In September 2022, a medication change was made. Within weeks, my body swelling was entirely unmanageable, my intestines began bleeding severely, so my diet had to change drastically (potatoes, eggs, and fluids only). We also found that my thyroid was way out of normal, and had to change doses of medication for that. 

I also gained 30lbs within 3 months - some due to swelling, some potentially due to my thyroid, but there's still no answer for the remaining weight gain. (Stress? Age?)

In February 2023, I developed tinnitus and sudden hearing loss in my left ear. I also developed some moderately severe dizziness/vertigo, some nausea, and increased migraines. I was put on steroids for potential Labyrinthitis, but the tinnitus and hearing loss remained. 

In the summer of 2023, my eyes worsened. I had developed Geographic Atrophy (worsening Macular Degeneration), then suddenly developed double vision, added dizziness, and eye strain as a product of the double vision. It was also discovered that have the very beginnings of Cataracts.  

So all of last year we were: 

• trying to get my thyroid back to within normal limits

• trying to find the source of the intestinal bleeding

• trying to find out why I developed tinnitus and hearing loss

• trying to figure out why I developed double vision and how to try and correct it

• trying to figure out why my weight hasn't normalized

On top of all of that, I went through an episode of Depression after losing my soul-dog Decker, among other additional emotional stressors. 

We were also trying to figure out our little mini-aussie Comet - who has been having medical issues. Lots of physio appointments for him, diagnostic tests, and physiotherapy exercises at home. He has an appointment with a neurologist next month. 

Safe to say - 2023 was an excessively draining year. 

Now here's what we've figured out so far: 

• My thyroid is finally back to within normal limits (January 2024 bloodwork was the first normal thyroid result since early 2022). 

• Still no explanation for the intestinal bleeding, but it had improved by December 2023, after a year of potatoes and 5 months after re-adding the medication that had been removed in 2022. 

• The Macular Degeneration has created a scotoma (blind spot) right at my fovea (central focus point) in my left eye. So I developed what's called Dragged Fovea Diplopia Syndrome. Essentially, my left eye is displacing the central image, causing double vision. My eyes are trying desperately to connect the two images, causing strabismus. The double vision cannot be corrected, but there is a potential that it will subside when I lose all of my central vision in my left eye. 

• I have developed a nystagmus, likely from inner ear damage, causing uncontrolled eye movements and additional vertigo/dizziness. The likely suspect is the Labyrinthitis in 2023. I will be starting vestibular physiotherapy to try and correct it, although because it's been over a year, the doctor isn't overly optimistic. 

• It looks like I might have the beginnings of something called Otosclerosis in my left ear (based on a CT scan report). I am still waiting to see an ENT to find out for sure, to discover if I am a candidate for surgery, or if I will simply use a conductive hearing aid for the time being. I will need additional scans in a few months and will need to keep monitoring my tinnitus and hearing loss. 

I still have a lot of appointments coming up, but it seems like the investigations are almost at an end. 

So now my body feels like I ran a marathon every day for the last year. My body is depleted and drained and I am perpetually exhausted. 

Diagnostic years are like being stuck in suspended animation. So now that we have figured out everything that we can, my body can finally relax. So as much as I want to do things like work out, go for more walks, enjoy the nicer weather, do more things at home, my body is telling me to sleep. 

I feel like I could be in and out of sleep for a week or more. 

Living With Severe Body Fluctuations

I JUST wrote about body shaming and how it affects and is affected by chronic illness. 

One of the main themes about having some of the illnesses that I have and some of the medications that I take is that my body changes - severely - depending on various factors. If my medication is wrong (especially for my Hashimoto's), I can either lose or gain a ton of weight in a short amount of time. Then add in the body swelling disorder and things change even more. That doesn't even cover the multitude of dietary changes I have to go through regularly due to my Inflammatory Bowel Disease. 

Below are a few pictures of when my medication has been really wrong. 

Below that are pictures of when my medication was *mostly* right and my illnesses that affect my body size were relatively well-controlled. 

In the most horribly under-weight photo, at the time I was eating anything and everything I could to gain weight. I was on a 3000-4000 calorie/day diet - with tons of good fats and proteins. But it didn't matter. Why? Because my medication was wrong. My Hashimoto's was out of control and we didn't know. I had zero control over my weight. 

In the most over-weight photo (which was taken today), I was off of my swelling medication for several months, which has caused a ton of swelling, and my Hashimoto's has started to go off the other way. I am back on my meds for the swelling, but it could take months to gain back some control over my body weight. As of today I have been on a mostly fluid diet for the past 7 weeks due to Crohn's Disease, eating as much as I can to get all the nutrients I need, but lacking in caloric intake (inevitably). It doesn't matter. The swelling and the weight gain are entirely out of my control. I have to wait - likely months - before my body feels like mine again. 

It's totally normal for bodies to fluctuate. When my medications are right and I have control over my body weight and size, I fluctuate within about 10-15 lbs over a year. That's with keeping a steady diet, a steady level of activity, etc... 

When my medications are wrong, though, and I no longer have control over how my body looks and behaves, I can fluctuate 30-50lbs within a year. That's also with keeping a steady diet and steady level of activity, etc... 

Body size and weight fluctuations aren't exactly the most important of the symptoms that I have to deal with, but it can be extremely bothersome. SO much money is spent each year for new clothing. Thank goodness thrifting is now trendy! It means that my closet is constantly overfilled because I have to keep basic items in multiple sizes. There are the stretch marks that show up, the stretched out skin, the changes in skin quality, pain and tenderness in swelled tissues, clothing that might fit one day and then are ripping at the seams the very next day. Then there's the mental toll that these changes take. Even though I KNOW I have no control, it's hard to resist the urge to either binge-eat (if I am underweight) or to crash diet (if I am overweight). 

I see my doctors regularly, I am closely monitored, and I get bloodwork on a regular basis. Still, these diseases wreak havoc on the body - inside and out. 

Thyroid Issues

Over the last couple of months, I have suspected that my thyroid levels were out. I have been having mood swings and uncharacteristic irritability, with weight gain, issues with sweating, tiredness, and then my eyebrows started disappearing. 

That last symptom is usually a very clear sign that it is my thyroid. Disappearing eyebrows and not feeling in control of my weight - those are the two key symptoms for me. 

Except there is one issue: with weight gain, I believed my thyroid was underactive. 

Well, I just got my bloodwork back - apparently my levels are high, not low. 

I also have low Vitamin D again. This wasn't as surprising. It took a year and a half on 50,000 IU per week to get it back to normal.... even though I take Vitamin D drops every day, my body does not seem to hold onto it. 

So tomorrow I start on my lower dose of Synthroid. I am a bit nervous because of the recent weight gain... because it strikes me as odd... but I have to get it to normalized levels. 

Overall, my Hashimoto's has only been on the extreme sides of high or low a handful of times. It can be really frustrating. Once it has gone too high or too low, getting it back to normalized levels usually takes several months. Back and forth, back and forth. 

The symptoms I find most frustrating are symptoms that make me feel as though I am not in control: weight gain or loss, and mood swings and irritability. It's really odd to suddenly feel rage and want to lash out for no reason. Luckily, I have dealt with these kinds of mood swings with other medications over the years, so I can now logically decipher if I am rationally angry or irrationally angry, and then avoid any arguments. At least most of the time. 

So fingers crossed that this new dose will help most of the symptoms. And if the uncontrollable weight gain persists, maybe it's a symptom related to something else. 

Time will tell, I guess. 

The Lighter Side of: Difficulties Showering

Due to nausea, energy, and pain, showers have become a very rare occurrence. I am able to shower these days, but only about once a couple of months or so. It is mostly because standing for a shower and moving around (arms above my head to wash my hair and what not) makes me more nauseated. For years, whenever I showered, I would vomit.
That part has improved now that my thyroid has settled back in and I am off of other medications. Unfortunately, it is frustrating that it took almost 4 years from when I was placed back on the correct amount of Synthroid for my thyroid to settle back down. Alas, that is the disease, and correcting hormonal imbalances can take such a long time! I am just grateful that it did finally settle back down. 2015 was brutal on my system!

With one option taken away, I discovered a new-found love for bubble baths. We also bought a shower bench so that I can still shower even if I am weak - I can just sit down under my luxurious raindrop showerhead and still get that experience.

The Lighter Side of not being able to shower often is that it feels sooooooo amaaaaazing on days I DO get to shower, and it means that I 'have' to have really relaxing bubble baths. Forced enjoyment...? Not a bad gig. Sure, it stems from negative experiences, but bubble baths are kind of awesome!