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. 

Medication Issues

Well, this weekend coming up is an exciting one. The MOST exciting. We are getting MARRIED this weekend!!!
As I am sitting here getting my nails done for the big day, after just coming back from the pharmacy, I am attempting to de-stress a bit today.
Life with chronic illness means that it pervades every single day. I don't get to ask for my illnesses to leave me alone for one of THE most important days of my life, and I know that. It's part of the package. There are things that are more in my control though; things like medications. My job is to ensure that I have enough to get me through this next week.
Except there's also an issue with that.

I thought I had refills available at the pharmacy, but I found out this morning that that wasn't the case. My doctor's office squeezed me in for a prescription refill appointment.
More bad news.
Apparently, I am going to have to switch doctors because of my pain issues. I am required to seek a new GP within a specific network - on the opposite side of the city. (If anyone has any recommendations of physicians in the NW, please let me know!). She did say that she would keep me on until I found a replacement, but she is no longer capable of changing doses or prescribing specific medications. It is beyond the scope of her allowed responsibilities. She also mentioned that she disagrees with the new rules, but, nevertheless, they are the rules. When we come back from the wedding and mini-moon, I will start searching for a new physician.

Then we got to the prescription.

Again, bad news.

She had to date the prescription for the 25th of September.
I run out of the medication on the 21st. So the 22nd (our wedding day) I would not have any medication to control my pain (or any day after that until we come back on the 26th-27th).

How is this okay?

Luckily, we found out TODAY. That means that I can force myself to be in excruciating pain today, tomorrow, Wednesday, and Thursday, so that I can save those doses for our big day. It means that I have to ration my medication just so that I can take the edge off on our Wedding Day and minimoon.
That's all I can do.
I have no power.
I have no real control.
They don't see what my days are like without medication. They don't understand what it means or see how it affects every part of my body and, subsequently, every part of my life.

BUT - I do have options.
I will skip my full doses for the next few days so that I can take my full dose on Saturday - to be comfortable on a day we were already nervous about.
We weren't sure how I was going to make it through the day already - but with no meds? Yikes.

Pressure

After watching someone on tv tonight get emotional because of pressure, I wanted to talk about the distinction between crumbling under pressure and simply becoming emotional under pressure, as well as acknowledging the different ways that people handle pressure.

There is often this misunderstanding that if you become emotional or cry because of pressure, that you cannot handle the pressure. For some reason we have this idea that if we show any sign of strain or difficulty, then that automatically reduces us to this idea that we are incapable of handling difficult situations. We all handle stress and pressure in a variety of ways. Some people cry when they are angry, some people say nothing. Some yell and scream and raise their voices when they are hurt, some smile and shed a tear or two in the privacy of a bathroom stall. Some people smile or even laugh when they are nervous and tense, even in the most devastating situations, like at funerals for example.
What distinguishes the ability to 'handle' pressure is not the automatic reaction of the body, but what happens afterwards.
I, for one, don't care if you cry through an entire experience - if you are successful through that experience and you push forward and finish despite any emotion, that means you can handle the pressure. On the other hand, if you cry and break down and completely give up what you are doing because of the pressure, to the point where you cannot even finish the task you set out to do or have a complete lapse in necessary communication, all because of stress or pressure, then sure - maybe that's when you cannot handle pressure.

There is a difference between becoming emotional and completely shutting down. If there is no breakdown, no failure to communicate, and you do what you were required to do, then all that shows is that you were emotional and that this particular task or job or game or whatever is incredibly important to you.

Crying - or tearing up - in and of itself is not a sign of weakness. I don't think it should be seen as a sign of weakness anymore. We have moved so far past that.
Only when crying is coupled with giving up or breaking down or refusing to communicate or move forward - that is when it is obviously too much for someone to handle. I mean, if someone is utterly inconsolable or can barely move from the sheer stress, then yes that can be a problem. You don't particularly want a surgeon, for instance, who cannot steady their hands before a procedure, or someone so nervous that they cannot complete their job, but these things can also occur in isolated instances.

When it comes to health, this kind of idea struck a chord with me recently. These cortisone injections had me especially scared. The surgery that I had last January had me mortally scared. I cried. My eyes welled up. I was shaky. I even had a panic attack.
What I didn't do was crumble.
When the nurse came in to put that epidural in my back, I didn't move or flinch or panic and ask her to give me a few more minutes or slow down or refuse at the last moment. When that three inch needle went all the way into the joint I didn't scream 'ow ow ow ow' or ask the doctor to stop. Was I crying? Yep. Was I inconsolable? No. I was scared. I was dealing with stress and pressure and emotion - but I still handled it. When that second needle went in, I didn't try to pull back or pull away. I gripped the pillow and winced in pain, but I managed to lay still.
When a doctor wanted to do a colonoscopy with no sedation, yeah I was shaky as hell, and I was in a hell of a lot of pain, but I got through it without any breaks of any kind. When I used to get a Lupron shot that got dangerously close to the bone each time, I hated every second of it, but I took a deep breath and handled it, every month. Three times a week I do my own sub-cutaneous injections -> I still get shaky and super nervous the split second before I insert that needle, but I do it every time. I don't avoid them. I don't stop doing them because they hurt or because they aren't fun to do - I do them because my body needs me to be able to do them. 

A 'moment of weakness' is just that - a moment. You can have grit and determination and you can be able to handle anything - even in the presence of tears. Or shaking hands. Or nervous smiling. As long as you push forward and keep going - you can handle the pressure.

I think we need to stop seeing nervousness and a few tears as a sign of complete failure. It's not. Not as long as you don't crumble and give up - and even then, if you can fail and then get back up and try again and again, you haven't actually failed.
So cry, shake, giggle, panic a little, but then take a breath and push forward.

Show people that emotion doesn't mean weakness.

Bad News = Stress = Worse Health

Since November, things have really been up in the air medically. Not only my health in general becoming worse as far as the Crohn's is concerned, then navigating the benefits AND adverse effects of starting new medications, but also dealing with issues regarding medication availability, medical coverage, and massive clerical errors that will find us in a frustrating position.

Every time I get bad news - from a doctor, pharmacist, case manager, insurance, financial changes, it causes stress. And lots of it. And stress just so happens to make nearly every one of my illnesses MUCH worse. So then I deal with more severe swelling episodes and inflammatory pain and psoriasis peeling. That usually requires more bedrest and more medications, which means more susceptibility to some of the nasty side effects.

Now don't get me wrong here. I am grateful for what meds, doctors, healthcare, and coverage I DO have, but all of this stress (which could have ABSOLUTELY been avoided or handled much better) doesn't do me any good.

Now, at 10:30pm, after fretful phone calls and emails and letters and documenting all of the issues, I finally have a chance to relax. And yet I am so horribly nauseated and in such significant pain that 'relax' is hardly a word I would use to describe what I can do now.

It truly makes me wonder exactly what I am being punished for.
Am I being punished for hitting my breaking point and requiring certain medications? Am I being punished for several errors made by someone else? Am I being punished for being forthcoming and volunteering all of my medical and financial information to those organizations that help me? Am I being punished because they *thought* I would get better, even though it was very clear from the beginning that that scenario was nearly impossible? Am I being punished BECAUSE I am so sick at a young age?

But most of all - and worst of all - I AM being punished for being in an amazing relationship. The simple fact that I found the love of my life - my true best friend and partner - which I was beginning to wonder if I ever could, THAT is exactly what I am being punished for.

It could be worse.
I have to remind myself of how lucky I really am... every single day...
But it is very frustrating to come to learn that because we found each other - because I found love with him, for him, and from him, that now several other parts of my life that were going well and were supposed to be stable are now being pulled out from under me. Knowing that several parts of this chronically ill life would be easier if I hadn't fallen in love...
That sucks.
That hurts.
It feels like I am not allowed to be happy in my social life or relationships because I am chronically ill.

Let's face it, I am being a bit dramatic here, but it's like 'hey you have a boyfriend now so you're fine and don't need any help'... even though my pain and my illness and my nausea and my eroding joints are getting progressively worse.

I KNOW that life in general is easier in a relationship. Having someone to count on and help take care of me is a blessing and makes a lot of things easier... but I don't believe I should be, then, punished for that. Strong relationships should be encouraged... and not result in a drastic and stressful change in circumstances...

We'll figure it out.
Until next time
#Strength