Tick List

The first 25 years of my life were pretty uneventful health wise. The next 25 not so much…

• Type 1 Diabetes
• Foot ulcer x 2
• Bone infection

So, I’m due a break. Right?

Well, apparently not.

Today I got my next official diagnosis of Sarcoidosis.

Sarcoid what?

If you want some info is here.

I’ll give you the highlights

To some of you it may sound a bit familiar……

“Sarcoidosis is a rare condition that causes small patches of red and swollen tissue, called granulomas, to develop in the organs of the body. It usually affects the lungs and skin.”

“There is currently no cure, but symptoms can usually be managed with medicine.”

“It’s thought that sarcoidosis happens because the immune system has gone into “overdrive”, where the body starts to attack its own tissues and organs.”

Yep! It looks like my good old immune system has been on a drinking binge and once again I’m the target of its friendly fire.

Ah well. I’ve been here, done that. I can do it again (and let’s face it I have no choice).

Having said that I’ve done this before, I have learned from how I did things 25 years ago with my T1D diagnosis.

This time:

• I got treatment sooner.
• I’ve taken time to understand the basis of the condition and treatment.
• I’ve found the organisations and charities.
• I know there is a community out there of peers that have lived experience and that I can talk to them when the time is right. For now, I will just lurk and learn.

I also have may learnings from my time managing my other conditions.

I will have a new team of HCP that specialise in respiratory conditions. I need to build relationships with them. I also need to join up my care between clinics and HCP’s. This new condition can affect my kidneys and T1D increases my risk of kidney issues too. The steroid pills I may have to take can also affect kidney function and blood glucose levels. So, I need to ask the right questions at the right time to make sure all is considered and joined up. I still believe that the only way that I will get true patient centred care is if I manage and drive it myself, using my consultants as the subject matter experts on the clinical side. I am the only constant, the only one in every clinic appointment, I am the one at the centre.

CT scan results if you like detail:

• Lymph nodes in the centre of my chest between the lungs
• 5mm node in the right lung
• Liver, kidneys and pancreas clear
• Blood tests booked to monitor kidney function (it dropped right off recently but has started to recover.
• Home monitoring of blood pressure and recorded for two weeks then review (one of my BP pills can cause kidneys issue so we agreed that I should stop taking it) so we can get my BP back in range.

Strange irony of lockdown is that all the appointments, test and scans needed to diagnose this have been faster than I’ve ever know due to hospitals and Dr’s surgeries having to postpone routine appointments. Also, that if I’d not have been locked down, I would probably have seen myself as too busy to call the GP. I’d have just struggled on.

There we have it. Another condition added to the tick list.

That’s enough for me now. Isn’t it?……..

Live Long and Bolus.

Grumps.

Taking Heart – 25 Years and Counting….

 

So today (26th August 2019) marks 25 years since I was diagnosed with Type 1 diabetes.

A lot has happened.

Technology advancements.

Lots of learning.

Finding my community.

Accidental advocacy.

Diabetes related complications.

My son’s diagnosis.

But that’s all in the past.

 

Right now, there is one overwhelming feeling.

That time has gone fucking quickly!

 

So, what about the future?

Right now, I’m ok with my diabetes management.

More ok than I ever have been and maybe a blog post on why will be written soon.

So, the future there looks good to me.

 

I care very little about statistics but two stand out for me today.

I’m 50 years old.

I’ve now had this half of my life and the older I get the faster time seems to go.

I have some very definite plans for what’s left of my life.

So, I need to make sure I take steps to be around as long as possible.

Steps to minimise the health risks that increase with age and are upped more by the length of time I’ve had this condition.

Priority one as of today is my heart.

I kind of need it.

My focus is not driven by fear nor by diabetes.

Family history of heart issues and strokes is addingup and that’s for family members that tick few or none of the at-risk boxes.

Of course, I can stick an added chunk of risk on what’s already there by having T1D.

 

No point in me making statements and promises of what I’m going to do except that it’s top of my list of things to discuss at my annual review next month and we’ll take it from there.

 

I learned a long time ago that living well with diabetes is not just about diabetes and I plan to be doing exactly that for at least another 25 years!

 

Live Long and Bolus.

Grumps.

Don’t Tell Me It’s Easy!

On the eve on any milestone event or anniversary it’s easy to sit and reflect.

I try not to do that.

No point looking back.

You can’t change the past.

But for me today that’s not been easy.

A quick flick through the last 24 years and 364 days brings me to one date.

A recent date in comparison.

 

Every talk I’ve been lucky enough to do over the last few years had a slide with that included this bullet point:

• Family History of T1D (but I didn’t know it was compulsory)

After February 2019 I made a slight amendment….

• Family History of T1D (but I didn’t know it was compulsory), and it’s still running….

 

Since then I have not blogged, tweeted or talked about my son’s diabetes.

That will not change.

It’s his story.

It’s not mine to tell.

If he wants to tell it then he can.

 

People have been kind.

I really appreciate that.

People have been supportive.

I really appreciate that.

People have asked what his A1c is.

Please don’t ask me that.

Please don’t ask him that either.

A few have told me that it must be easier because I have T1D……

I don’t appreciate that!

Easier?

It’s it Fuck!

If I’d been hit by a car in my past and then this year he had, would it be easier for me?

No.

I’d just know how much it hurt!!

So, if anyone out does think it’s easier.

It’s not.

It’s really not.

That blood glucose reading just before you get him in the car to start his life with T1D brought almost 25 years of living this crashing through your brain like an express train.

At the same time, you maintain that calm poker face so that he knows that he’s going to be ok.

Because you are the only one that never loses it.

If you lose it then he’s going to think that he can’t do this.

If you are just you, then he knows that he will be ok.

And he is ok.

Not because he as 16 and its easier.

Not because I have T1D and its easier.

Because I am exactly the same parent that I was before his diagnosis.

Because that is who he needs and trusts.

I’ll agree that it is different for me.

But its sure as hell not easier!

Live Long & Bolus.

Grumps.

Tomorrow Never Comes…

The letter has arrived to remind me my annual review is in September.

So the voice in my head (or at least one of them) tells me “sort a few things out” before I go and get my bloods taken…..

It’s a natural thought, (this is where everyone tells me they never think this and I’m a bigger freak than we already knew), and I always tell myself, when I see that yearly reminder, that today is the new start that kicks of a few minor changes to live a bit healthier etc.

Reality is that I do.

I make the small changes.

I go to the appointment.

I always come out motivated.

I make a few more changes.

Then, life takes over.

It takes my focus

So each day I tell myself that “I’ll sort that tomorrow…”

 

I actually really enjoy going to clinic appointments.

I lead the conversation and don’t leave until I’ve covered everything on my agenda.

I go annually, which we agreed was what I needed sveral years ago.

However, this time I may ask to go every 6 months.

Why?

Annually gives me 365 “I’ll sort that tomorrow(s)” and that’s too many now I’m 25 years into this Diabetes stuff.

And as my dad always told me: “Tomorrow never comes”.

 

Live Long and Bolus

Grumps.

Complicating Complications

I’ve run on and on about the sight issue with my foot, Right?

In the past, I’ve run on and on about my nasty little rash due to tape allergies….

(I’m not sensitive, I’m intolerant!)

Well, in the interests of completeness, I have managed to combine the two!

Part of my #DIYIV kit is a “Mid-Line Cannula” inserted into vein at the bicep (yes, if you look carefully there is one somewhere) that runs up to my shoulder area. There is a clip stuck to my skin to hold the line in place and it is (was) tapped down with Tegaderm (I think) to prevent infection of the arm.

Knowing that the tape was likely to give me a rash, I decided to go with it and see how bad it got. After all, I could put up with a bit of a tickle for 6 weeks.

I did already have a rash on my lower arm from the 3 days of tape that held in the standard cannula before the Mid-Line was seductively inserted by the Doctor…….

Within a day, as I had the expected rash appeared and by 7 days it was itching like a bad case of Crabs….

I still elected to carry on with the tape and see how it went.

It went Shit!

The rash and itching was worse and I was reacting to the adhesive of the clip too.

Again, at the weekly dressing change by the Nurse, after a discussion, I stuck (no pun intended) with the same tape.

Stuck….

Kind of ironic.

By that evening the tape just slid off my arm.

The reaction had decided to go nuclear and arm had erupted in to an oozing (genuinely love that word) flow of bodily fluid (not the kind that’s enjoyable to produce…).

Carefully, like an actual grown up, I cleaned the area, let it dry then patched it up as best I could with the only tape I don’t react to. Hypafix.

All of that was on Sunday. Come Monday I toddle of to work 175 miles away, do a day’s work and get to my hotel. 8pm sees IV drip time and that goes to plan as always.

However, when disconnecting the IV line, I notice that the mass of tape is moving a bit (like too much of a bit!).

Closer inspection sees that the clip is no longer stuck to me as, yes, you guessed it! OOZZZZZZZZING…

Only one thing for it!

Carefully.

And I mean fucking Carefully!

Lift the clip, clean under it, let it dry, strip of Hypafix underneath then tape (what remains of) the clip to that.

Side note: It did cross my mind that the only thing that came close to bothering me was that I was totally un-phased by pissing around with this kind of thing.

My conclusion? People thing I’m resilient. Maybe I’m just stupid.

Anyway, all went to plan, if you can call it a plan and it no looks like this…..

It’s working ok and I will be back home at the weekend, visiting the clinic to come up with a suitable but more professional solution.

Getting the foot issues has not been ideal.

The treatment could be seen as a challenge.

The rash making the complications (or at least the treatment of them) more complicated is quite frankly taking the piss!

However, it’s just one of those things.

I will never, where humanly possible let, any of this stop me working or living my life the way I want to.

 

When life throws you hand grenades.

Catch them.

Pull out the pins and throw the bloody things back!

Live Long and Bolus

Grumps.

 

IV AB Day 5 – Flying Solo

 

 

Day 5 saw me flying solo with my IV and self-administering for the first time on my own at home.

Nothing to report.

Everything went to plan and was uneventful.

Which is good.

I made sure that I was on my own so that I had no distractions.

I did take a longer time to set it up than when supervised at the hospital.

Doing this for the first time I guess I checked everything 3-4 times more than needed.

But I do understand that this is serious shit and that getting it wrong could cause me additional issues that could at least be a pain in the arse……

 

Again, this reminded me of my Diabetes diagnosis and the first injection that I did on my own when I got home……

Everything went to plan and was uneventful.

Which was good.

I made sure that I was on my own so that I had no distractions.

I did take a longer time to set it up than when supervised at the hospital.

Doing this for the first time I guess I checked everything 3-4 times more than needed.

 

I think that these are both like driving a car.

You are shown how to drive.

You get behind the wheel under supervision.

You learn and become more confident.

You pass your test and get released into the world to drive on your own.

Your first trips out unsupervised are hesitant and you double-check every move and maneuver.

With experience your confidence builds.

It becomes second nature.

Before you know it, you are driving with the music blaring, your arm out of the window and your feet on the dashboard……….

 

As I carry on with my DIY IV I will get quicker.

It will become second nature.

It will become more familiar.

However, I must ensure that familiarity does not breed contempt.

That it does not lead to mistakes or errors.

 

Live Long and Bolus.

Grumps.

 

IV AB Day 4 – Released into the Wild

The plan for today:

• Get new cannula (Mid-Line) fitted by DR
• Set-up own drip again
• Get dripped (is that a thing?…)
• Bugger off home for Sunday roast!

Had a longer wait today as I needed to see the Doctor to put in the “Mid-Line” cannula.

Why does it need a Doctor I wondered?…

Well, as I found out, because its fucking long!…..

This is the original Standard cannula. It needs to be changed every 3-5 days. It is also in a bloody annoying and inconvenient place!

Because I will be on IV daily for at least 6 weeks I was offered a “Mid-Line” cannula that can stay in place for at least 3 months. Sounded good to me so I agreed.

When I was called in I was asked to lie on the bed type thing.

The Doctor comes in and tells me about this thing…..

“I will insert it here (pointing at the place my bicep should be) and it will go in your vein up to here (pointing just below my shoulder)”.

“Okay” my mouth said.

“OH FUCK!” my brain whispered….

The Doctor proceeds.

Uses an ultrasound scanner to find the best route.

Unpacks his sterile gown.

Puts a sterile sheet thing with a hole in it over the insertion area (stop sniggering please).

Injects my arm with local anaesthetic (Oh. Numb left hand. Useful…..)

Sticks in a big needle thing.

Feeds in what seems like 123 metes of cannula.

Withdraws inserter (he told me it was a safe method…)

All done!

 

I have to be honest, this is 100 times more comfortable than the other one.

I can bend my arm ok without catching the cannula.

So even though it was a prolonged procedure it was worth the wait.

After that I set-up my IV as I did yesterday and got my daily dose.

 

Bonus for the day?

I got given everything I need for the next 7 days to do this solo.

I need to go back every Sunday, get my bloods taken and pick up the next week’s supplies.

The guys at my hospital have been fantastic!

The extra time that they have taken in teaching me to do this on my own allows me to continue to live my life how I need to and ultimately earn a living.

So, tomorrow I fly solo.

But that’s another blog post….

Live Long and Bolus

Grumps.

IV AB Day 3 – Under Scrutiny

I’m going to try and keep these short and quite soon I expect them to stop.

Once I’m up and running on my own this will just become part of my daily routine and there will be no story to tell.

So, the plan for today was….

• Go to Ambulatory Care
• Prepare my own IV drip, under supervision
• Get a longer term (up to 3 months) cannula inserted

As soon as I walked in I could see that there were only two staff in and a lot of people waiting for treatment, so I know I’d have a bit of a wait. This is fine with me. People are getting the care and attention that they need so I will never mind waiting my turn.

The nurse calls me in when it’s my turn. “were you hoping to be trained how to do this today as we are short on staff and it takes a long time to do”.

This is not really what I wanted to hear as I’m impatient to get signed off and let loose with IV in the wild.

I explain that the plan was for me to do the setup but I totally understood if it’s not possible. However, I was on the clock a bit with this as ideally, I would be going away for work on Tuesday (3 days’ time). I explained that I have already had the process explained and was ready to try myself.

“Ok, let’s see if you can recall any of the steps with all of this then” …

Yesterday I found it easy to remember what to do. Having been around syringes, sharps and solutions it had all felt very familiar to me. So, I rattled off the process step by step without hesitation.

“Oh, you did remember well! How do you feel about trying to do it yourself or would you like to be shown a few more times?”

My reply “Well, you won’t let me go it alone with this stuff if I don’t will you? I’ll do it now”

Sudden flash back to the week I was diagnosed almost 24 years ago.

A nurse comes to do my pre-meal injection (syringe back in those days).

“We will show you how to do this as many times as you need and then when you feel ready you can try yourself”.

Grumps – “I’ll do it now please”

Nurse – “Are you sure you are ready?”

Grumps – “Will I you let me out of here until I can do this myself?”

Nurse – “Well. No…..”

Grumps – “Then please pass me that syringe”

Clearly, I haven’t changed in the last 24 years.

I am still a stubborn bastard!

Everything went to plan an I started myself in my very first #DIYIV

Unfortunately, there was no Doctor available to do the cannula insertion but that has been moved to tomorrow.

At least it will give me something to write for Day ……..

Live Long and Bolus

Grumps.

Starting on IV – Days 1 &2

I’ve never written a diary.

Nope.

Never.

It’s not really me, is it?

I don’t need to write down my feelings. In fact I try to never have any…..

I don’t really have private thoughts. I tend to spew them about on social media.

However, I have decided to document the next chapter of the treatment of my foot issues on this blog.

Why?

Simple really.

At some point, someone about to start on daily IV antibiotics may stumble across this and it may have some information that helps them along their own journey.

I think of it as possible future peer support……

A short background to all of this.

A foot ulcer that has taken 10 months of treatment so far.

A fantastic team that tailor my care to my needs and life.

A list of old broken bones and trauma that I have no recollection of doing. Clearly alcohol must have been involved at some (or many) point……

So, this week I started the next chapter of this long and at times cheesy (its hard to wash a foot you have to keep dry) story. Before I was lucky enough to go to ADA in Orlando, myself and my team had agreed that the day after I got back I would start a 6-week course of daily IV antibiotics. That due to having to work away, I would be taught to self-administer these so as not to impact my life and importantly my income (no work, no money, no bills paid).

Day 1

Foot clinic first.

The ulcer was looking a bit worse for wear after a week on my feet and all that travel, but the general consensus was that it had fared well and the plan of self-care that we had agreed had worked in the main.

I was also fitted with a new offloading boot. Much more robust than the previous one and it will help aid the healing once the infections (yes, 3 to be exact) in my foot and bone have been banished. Of course, I look like a total knob! However, I managed that with ease even without foot issues so it’s not a problem.

Then, off I hobble to the Ambulatory Care Unit…..

First bit of good news was that they were expecting me and knew all about the need to self-administer.

Day 1 here was easy.

Cannula inserted.

IV drip set up.

30 min later I was on my way home to return on Day 2 for my first bit of instruction.

All that was left to do was to put on the new boot when home (you can’t drive in these things. To be honest you can barely walk in the bloody thing!), make a cup of coffee and over share the whole experience on Social Media…..

Day 2

Off I head to the hospital armed with a pad and pen!

Forcing myself to try and be a grown up always hurts but IV stuff is serious and whist I’m a dick head most of the time, this is the time to not be.

Today I was shown how to mix the antibiotics and set up the drip.

I wrote it all down step by step.

My writing is shit!

I mean, really shit.

So, had to take a bit of time to make sure I could read it later.

It’s a fairly simple process to be honest. The things I have had to do in the last 24 years that Diabetes has been living with me make it all easy to understand and there is no likelihood of me being overwhelmed with is because this just feels like and extension of what I already do….

My biggest challenge was actually to not tell myself “well that’s easy” and switch off my concentration.

With this going straight into my blood stream, I need to focus on infection control (because an infection whilst administering antibiotics for existing infections would really be taking the piss right now).

Anyway, there I am with 20 min on my hands as the drip is started.

Only one thing to do…..

Tweet it all out there…

I am very grateful for everyone’s best wishes that have been received.

For all that have voiced their concerns for me. I appreciate that too.

However, this is me, I am genuinely ok with this and this will have a successful outcome, and…..

You will have to endure endless tweets and posts about it too…

I am fully aware that my “resilience” can be my downfall. I am my own worst enemy at times as I push myself too far to prove to myself that I’m immortal. Not this time though. You don’t get rid of Grumps that easily…….

I’m back at the hospital again tomorrow, but will tell you about that, well, tomorrow.

Live Long and Bolus

Grumps.

Type one complications – Kath’s Story

So I’ve had to give myself a little push to write this…partly as I’ve moved on and partly because it still hurts just a bit…

A bit about me…type one Diabetic since being diagnosed aged 9, so approx 34 years. Admittedly throughout my teens and early 20’s I thought I didn’t have to test my blood sugar as i felt “fine” ….of course I didn’t…that daily tiredness and feeling sluggish I just accepted was how I was meant to feel…and that the unexpected hypos when I did something different was a circle of being low, over eating and then being high but not ever really testing to enable myself to treat the high and get on a level. I pretty much only tested if I didn’t feel “right”! Thankfully after diagnoses I have only had 2 admissions through being hypoglycaemic and have to date never experienced diabetic ketoacidosis.

Attending diabetic clinics at the Gp surgery was always a bit unfulfilling to say the least… “you need to get your blood sugar levels under control” was the 3 monthly advice with no real concerted effort to say how but starting with testing would have helped and that was down to me.

So fast forward a few years and various diabetic related complaints….numerous retinopathy eye operations and laser surgeries, almost losing a toe to an infected toenail removal and then the unthinkable happened…(Not a single offered consultant appointment I might add)

“I’m 38 and I’ve had a heart attack” … this was going to be the distorted mantra that was to plague my mind for the next 6 months. (And occasionally still) Round and round it went. I was sat in hospital for 5 days waiting for an angiogram to confirm the myocardial infarction, I had been working nights for the preceding two weeks as a mental health nurse on my own in an office experiencing what I told myself was a trapped nerve…id been to the Drs 3 times, had ECGS and was simply told I was too young to be having heart problems and that it was probably anxiety..…I turned down an ambulance when I had chest pain at an evening out and drove myself to the out of hours Gp…then a lovely old school Gp took some bloods and sent me up to the hospital for a chest xray, which of course came back negative. I didn’t have raised cholesterol or high blood pressure either. The consultant was about to send me home with a confirmed trapped nerve and some Diazepam when she said” oh but we will just wait for your bloods and then send you on your way”. She actually said on her return some 90 minutes later that “that’ll teach me”… “You’ve had a heart attack and I must admit you straight away”.

So angiogram aside (which is the oddest feeling in the world…being awake and feeling something moving up inside your arm and into your heart which isn’t necessarily where you think it is!, lying bare bummed on a cold metal table that I thought I was going to fall off and hearing lots of figures being bandied around and the surgeon asking for a 2×2 (whatever it was) and the assistant coming back and saying they didn’t have one! What?! but I need one!) Recovery from that is really quick and I finally went home the next day. Then the real recovery started…being good to myself, testing my blood sugars…for a few weeks I was really convinced that all I could eat was chicken salad for the rest of my life.. I attended cardiac rehab with all the other heart surgery patients of an average age of 70 plus! The stress wasn’t helping my blood sugars at all and I decided I had to join a gym! Plus I didn’t want to die and became a little obsessed that that was going to happen imminently….depression comes with any chronic disease and I was slipping down that slope.

4 and a half years later and having stuck with the gym and starting running, also having had an insulin pump for the last 2 years has all really helped! Ive had the best Hba1c ever (it still needs improving) and last year I ran my first ever half marathon albeit at a snails pace but I did it with 30 plus other type one ‘s and had no dramas! I attended the Animas sports weekend at Loughborough which was also really valuable. If I had my time again or could have spoken to my 13 year old self id definitely have had a word with myself sooner!! There really shouldn’t be anything a diabetic can’t do !! It just takes a whole lot more planning!

Be kind to yourself is my motto these days, I didn’t ask for this blooming disease (none of us did) but I have it and I can manage it with support. Technology is immensely helpful as is the online support! So ask for help before it gets too much!

Kath

Thanks to Grumps for getting the #talkaboutcomplications  started!