Taking A “One Day At A Time” Philosophy With Chronic Illness

“Trigeminal Neuralgia…..what on earth is that?”

That was my reaction when I was hospitalised in May 2014 with the most severe right-sided face pain that I had ever experienced in my life. I had been trying to cope with it for 3 weeks with strong pain killers. I was thinking it was just another idiosyncrasy special to me and would soon pass.

Apparently it was here to stay!

I woke up at 4am on the morning I was taken to hospital by ambulance. The pain had got to such a high level, I was physically sick and running a fever as my body was trying to find a way to cope with it. The rigours had set in and all I could manage to say to my husband was “ambulance, call the ambulance”

I had no idea what was going on but I knew I needed help.

Once in Emergency at my hospital (which I must point out, I am now on first name basis with many of the nurses on the wards due to my frequent flyer status!) the doctor in ER came and listened to my story.

Within minutes he diagnosed Trigeminal Neuralgia, although that diagnosis did need to be confirmed by Specialists.

I was admitted to a ward within the hour.

A long stay lay ahead while my medical team struggled to get this first major Trigeminal Neuralgia attack under control. The first 4 days were pure hell until they found the right medication for my case. Often it’s a medication called Gabapentin that works well for TN. It unfortunately did absolutely nothing for me, despite the dose being constantly increased.

My Clinical Immunologist is the Specialist who looks after the majority of my medication and my Rheumatoid Arthritis. When he visited me on the ward the next day, he was very disappointed I had left the situation so long before coming to the hospital. He’s very hard to read at times but obviously he really does care!

How was I to know?

The Neurologist who saw me once I was admitted, was much more understanding as to why I had deferred seeking treatment. I asked him how on earth can I tell, with this idiopathic complex disease, if a symptom is one that will just go away on its own or one that is more serious?

I don’t want to be running to the Dr every 5 minutes saying that something hurts or doesn’t feel right. It’s one of the hardest parts of having such a difficult disease. He completely understood that I didn’t want to waste anyone’s time but all my Specialists re-iterated that my condition is serious and I am never to hesitate in getting treatment if a new symptom arises.

It’s all a juggling act and one I think I’m getting better at handling…until the next curve ball comes along of course.

So after an MRI, a Lumbar Puncture (which actually wasn’t as bad as I expected it would be) and 10 days in hospital, I was officially diagnosed with Trigeminal Neuralgia.

So, what on earth is that?

Trigeminal Neuralgia is inflammation of the trigeminal nerve, causing intense facial pain. It is also known as tic douloureax because the intense pain can cause you to contort your face and move your head to try to get away from the pain. That type of movement is known as a tic.

The pain of trigeminal neuralgia is intense. There is often no known cause but it can be linked to auto immune diseases, most commonly Lupus and Multiple Sclerosis.

Idiopathic trigeminal neuralgia is a clinical diagnosis and often no testing is required after your Dr has taken a history of the situation. In my case my Specialists wanted to rule out MS so that’s why I needed the MRI and Lumbar Puncture.

My Neurologist however still believed, despite my Lumbar Puncture results being ok, that I do in fact have an inflammatory nerve disease. My MRI was inconclusive for MS but falls into the “probable” category.

We decided to park all thoughts of probable MS as I had more than enough to contend with. In all reality my treatment at this point wouldn’t have changed anyway. The medication I was eventually given to treat the Trigeminal Neuralgia (Lyrica), worked and continues to work really well today.

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My Philosophy of “One Day At A Time”

As I was discharged from hospital in May 2014, with yet another diagnosis to pack in my suitcase, I had no idea what lay ahead.

Just 5 months later the strongest bone in my body (my femur) was about to have a major pathological break and I was to be diagnosed with a rare, debilitating and progressive bone disease.

It’s quite probable that my bone disease is the cause of my Trigeminal Neuralgia. My bones are so dense that they impact all kinds of nerves.

Some days, as I look back on my story, I am just so relieved that I didn’t know what lay ahead. I feel like I have been protected from being completely overwhelmed.

The philosophy of “one day at a time” is a really good one as far as I’m  concerned. I am a strong believer that we are only given in this life what we are able to cope with (even if we feel like it’s a lot to bear). So if that means complex diagnoses and health events will arrive unannounced in their own time, I’m ok with that.

Probably just as well I’m ok with that idea as they do seem to be in the habit of showing up when I least expect them!!

Take care

Sam xx

One day at a time sweet Jesus
That’s all I’m asking from you.
Just give me the strength
To do everyday what I have to do.
Yesterday’s gone sweet Jesus
And tomorrow may never be mine.
Lord help me today, show me the way
One day at a time.

One Day at a Time” is a popular Country and Western style Christian song written by Marijohn Wilkin and Kris Kristofferson

 

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Lumps, bumps, sagging eye lids and the list goes on

LumpsLast week I saw my Dermatologist as I have a lump growing on my right lower cheek which I was hoping would go away. Best case scenario was that it was a boil or a pimple that forgot I was nearly 50 and that would be that.

Not to be, it is under a freckle that I have had all my life, so that was a little concerning and while it is noticeable as a pea sized lump on my face, it is very definitely also pea sized under my skin too. I knew I couldn’t ignore it for much longer!

My Dermatologist is another one of my Specialist “friends”. She has been on my “Medical Mystery” journey since 2008, in fact she was the first one to predict that something was not right with my immune system as all my moles ( & I have been blessed since birth with many) started to have white circles around them. She was fascinated! They are called halo nevi and it is not uncommon to have one or two but I had multiple. My immune system had decided to attack all my moles….this was the start of the autoimmune onslaught that has continued to this day. She was also the first Specialist to call me “special” and each time I see her I thank her, tongue in cheek,  for being the one to start me off on this mad rollercoaster ride. She is great fun and we always have a good laugh. Although this visit through one of our laughing sessions she stopped and said, “You know Sam, if you were to tell your story to a complete stranger they would find it almost impossible to believe and the scary thing is we just don’t know which direction your body will attack you next, nothing will surprise us anymore though!!”

Funny, sad and true all at the same time really.

Anyway, back to the lump. She analysed it thoroughly and mumbling “hmmm”, “ok”, “hmmm”. She stepped back to have a look, looked at it from the left and right and had her head in so many different directions I was expecting her to do a handstand to see it at a different angle altogether. Final analysis…..it’s got to go. She really doesn’t know what it is but she is suspicious of it. We are hoping and praying it is a benign odd cyst that my body has decided to grow but either way my philosophy is always better to know what we are dealing with than to sit and wonder. She is going to do a biopsy in 2 weeks time and then we will take things from there.

So that’s the lumpy, bumpy thing but the other issue I’ve been battling for a number of months now is a drooping right eyelid. I have seen an Ophthalmologist and he at that stage thought I had a slight scratch in my cornea and my dry eyes ( Sicca Syndrome) was in overdrive so we decided to treat it with lots of artificial tears with instructions to come back and see him if it didn’t get better.

Well, of course I broke a leg not long after that so it wasn’t a major priority.

I have today made an appointment though as I had one of the worst episodes ever yesterday where the eyelid just closed over my right eye in some sort of spasm and I had no function in the muscle to open it for at least a minute. Doesn’t sound like a long time but when it happens it is really scary and very disconcerting. This is about the 4th time it has been that bad. Each day I get the sensation that its going to do that but it doesn’t eventuate or if it does it is in a minute way so I don’t notice as much. I also have started getting brief episodes of double vision with it so I am again hoping to find out what’s going on as soon as possible.

I’m sure there won’t be an easy straight forward answer but each clue helps my medical team put the pieces of  the jigsaw together, albeit very slowly…good job I’m medically retired and have the time to be patient ( or should that be to be the patient!)