One more rabbit hole dealt with…..

On the Easter weekend I took the decision not to blog for a few weeks. My health had gone down another rabbit hole and I was finding it overwhelming to deal with. Now that I’m through the worse of the rabbit hole it’s time to start blogging again.

Yesterday I had surgery. The thought of this surgery terrified me. I am allergic to general anesthesia and have come very close to death several times in the past thanks to it. However, I have to give a huge shout out to my surgical team. My surgeon and anesthetist took my concerns seriously and agreed to operate using just local anesthesia and sedation. As long as I could tolerate it. If I couldn’t then they’d have to put me under but would use different drugs than usual in an effort to stop the adverse reactions I’ve had in the past.

Apparently, I’m a superstar! I not only tolerated it but I tolerated it under such mild sedation I was allowed to go home the same day, rather than stay overnight as we’d been expecting that I’d need to do.

Today, I’m sore and morphine is my friend. However, aside from the surgical site itself I feel pretty good.

I now have to wait three weeks for the pathology results of the mass that was removed. All along the belief has been that it’s probably benign, and in fact when biopsied last year it was found to be benign then. However, since then the mass grew and changed in ways that made it imperative that it was removed.

If it’s not benign and I need to deal with radiation therapy or chemotherapy then I’m ready for it. Nothing is as scary as the thought of the surgery itself. Now that I’ve survived that I can deal with anything.

It was a very strange few weeks recently as part of me was completely convinced that I wasn’t going to survive the surgery; that I’d have an allergic reaction and die. It was an odd position to be in.

Yet once I arrived for the surgery itself and it became clear how much work the day surgery team had done to be ready for me; setting up a completely latex free operating theater just for me; making sure everybody knew at every handover that I have multiple allergies, was absent my service dog, and that I’m deaf; I felt more optimistic.

So this is a HUGE shout out to the day surgery team at my local hospital. They made a terrifying experience as positive as it could possibly be and made me feel validated and understood throughout.

Now I just have to take it easy for a while and let everything heal. One more scar for my collection!

When you don’t know what to say, say that; don’t just say nothing!

One of the things that I’ve noticed over the last year is that people seem to have a real problem with not knowing what to say when somebody is in an extreme situation. Rather than say the wrong thing, they say nothing at all.

I assume that it’s a variation on the old adage that if you have nothing nice to say, don’t say anything at all. However, as the recipient of a lot of silence over the past year, from people I’d previously thought of as friends I’d have to say that it hurts.

As I start to re-enter the world a little, even heavily mediated by technology, I’m finding that many people just didn’t know what to say when they heard about my precarious health. So while they were thinking about me, and concerned; willing to help where possible, they still just said nothing.

So from my perspective, they didn’t care. They weren’t interested in me or what was happening to me. Their own life and situation was much more important than taking a few seconds to drop me an email now and then. It hurt.

So for what it’s worth – if you know somebody in a difficult situation and you don’t know what to say to somebody in response, may I suggest that you say just that.

Let them know that you are thinking of them. That you care.

By being silent you’re making a statement. It feels as so you don’t care enough to make an effort to say anything, even the wrong thing.

When people are in extreme situations; especially one like mine which is extremely isolating please take the time to just say hello now and then. It takes next to no time for you to do but means the world to those fighting such health battles.

There is one caveat to this recommendation of course. If you’ve been asked to not contact the person, that’s a different issue. In that case I strongly suggest that you do do as asked. People don’t ask for no contact with others lightly. Disrespecting such a request is incredibly arrogant and narcissistic.

I believe that people know what they can handle and what they can’t. Unless you’ve been asked not to contact somebody in a difficult situation… take a moment, let them know that you care.

What a fantastic date to return to work: even in a very limited fashion… International Women’s Day

So today is March 8th, 2017 and the day that I officially start my transition plan to return to work. It’s very limited at this point and I’ll be working from home to accommodate my hypersensitivity and anaphylaxis. But it’s a start.

It’s been almost exactly 10 months since the anaphylaxis reaction that triggered my Reactive Airways Dysfunction (RADS) and all the complications that then ensued. 9 months since I was officially signed off work and 3 months since I was placed on Long Term Disability insurance.

For much of the first 6 months I would never have believed that this day would ever come. I was literally fighting to breathe each and every day. We were discussing second opinions and complex surgery out-of-town. Thankfully, a last straw grasped at turned out to make all the difference and seeing a speech language pathologist and getting off oral steroids helped me turn a corner.

I also finally start the lung rehabilitation program tomorrow. So over the next 10 weeks I will gradually increase my work hours as I complete this program. The hope is that by the end of the rehab program that I’ll have enough stamina to return to full-time hours, most likely still working from home for the foreseeable future.

Unfortunately anaphylaxis reactions don’t tend to get better with time, but rather worse. There’s no way to test it though without exposure which seems a pretty drastic way of finding out if the reaction is still deadly or not so I think I’ll miss out on that option. Especially as minimal exposure even to just citrus scents are triggering extremely severe asthma attacks and hive reactions.

As I mentioned recently, my employer is doing a fantastic job of working with me to work out disability accommodations. Already this week, with the help of the Information Technology (IT) department, we’ve been able to work out how to facilitate my virtually attending some meetings on campus later this week mediated through WebEx.

There remain a number of other issues to resolve but it seems like everybody is committed to working it out. Coincidentally almost all involved in this process are women. From the President of the University to my doctor and many others in between.

So today as a member of the workforce once more I’m delighted to wish you a Happy International Women’s Day.

Further I hope that today, that more boundaries are broken down and that women from all walks of life are celebrated. #she celebrates the spirit of women and their logo is racially and age inclusive however it doesn’t obviously include the disabled woman. Which of course, could be like other aspects of womanhood and invisible on the outside. However, experience suggests that the disabled remain an ignored minority so I ask you to think about all women today, young and old, tall or short, able-bodied of disabled in whatever way and celebrate them all.

For history has shown that it is women that need to empower women, and not to rely on men to do so. Let’s not forget the suffragette movement which worked so hard to give women the right to vote.

Exercise that right. Vote wherever and whenever you can. Your voice counts!

Happy Women’s Day!

“Neither a borrower nor a lender be…” William Shakespeare (Hamlet)

I was reminded today of this quote from Hamlet: “Neither a borrower nor a lender be…”

Some time ago I lent my sewing machine to another person, who used it for some months before returning it, having bought themselves a new sewing machine with the almost throw-away comment that mine was no longer working.

At the time, I didn’t have the ability to deal with the situation and point out that in my opinion, when you borrow something it should be returned in either the same condition or better. Certainly, not no longer working especially when you then just bought yourself a new one and left me with something apparently no longer fit for purpose. So I simply put the sewing machine aside and swallowed my anger and resentment.

However, today I got out my sewing machine so that I could resume dressmaking in accordance with my recently revised bucket list. I was, of course, expecting it not to be working and was intending to see if I could fit it myself or at least find out what was wrong.

Ironically, as I’ve let it sit for at least a year putting off doing this, there was nothing wrong with it. I wiped it down, oiled it, threaded a bobbin and the needle and proceeded to run through all 20+ stitches on an old pillow case. It worked perfectly.

It was certainly a nice surprise that it was working after all.

However, the experience reminded me of the rest of the quote from Hamlet which often gets forgotten:

“Neither a borrower nor a lender be. For loan oft loses both itself and friend. And borrowing dulls the edge of husbandry. This above all: to thine own self be true. And it must follow, as the night the day. Thou canst not then be false to any man.” William Shakespeare (Hamlet)

The meaning of which is simply, that when you loan something you are likely to lose both the item and the friend to which you loaned it. That if you borrow something, you don’t have to work for it yourself quite as hard and that if you are true to yourself, you wouldn’t lie to anybody.

I’ve certainly found out the hard way, not just with the sewing machine but with significant amounts of money that loans and financial entanglements are a great way to ruin a friendship or relationship. That especially when money is involved, people tend to make false promises or assurances.

Therefore, I am going to use this sewing machine experience to remind myself of what I think is the most important message in the quote – to be true to myself.

Does that mean that I won’t ever loan anything to anybody. Not at all. It simply means that I won’t ever loan anything that I can’t afford to give them. In which way, if I don’t get the item back there is a good chance that the friendship or relationship can still survive.

Likewise I will never borrow anything that I don’t give back when I’m meant to, and in the same condition as it was in when lent to me or better.

Now for those of you that have borrowed things from me recently, this doesn’t give you permission to simply keep the items, it just means that I gave it to you to borrow knowing that if I don’t get it back I can cope without ill feeling towards you. Unlike the borrower of my sewing machine for whom I have felt great resentment for quite some time!

Today, I choose to let that resentment go. Whether I could have done so if the machine had in fact been broken, I’m not quite sure.

However, to paraphrase Steve Maraboli from his book ‘ Life, the Truth, and Being Free‘: Today is the day that I choose to stop being haunted by the ghost of yesterday. Holding a grudge & harboring anger/resentment is poison to my soul. Instead I will get even with people…but not those who have hurt me, I will simply forget them, instead I will get even with those who have helped me.

I challenge you to do the same….

Today I feel like a pincushion! Blood work….

Today I feel somewhat like this pincushion.

Over the past few months I’ve had my blood taken a lot while we’ve investigated my body for various problems and along the way caused side effects to some medications that then need treating with others.

One of these was that I was, until recently, on a potassium ‘depleting’ medication for High Blood Pressure. Given that many of my asthma medications can also deplete potassium levels in the body, this was a cause for concern. So I ended up being supplemented with, what felt like huge amounts of, potassium.

Potassium is pretty important to be within a good range for the body. As I can’t eat bananas due to my allergies I had to take supplements. 8 HUGE pills a day.

Anyway, my respirologist didn’t like this so recently switched my BP medication to a potassium sparing medication instead. So I took the new medication under appropriate precautions, in case I was allergic to it. So far so good. However, I now have to reduce the supplementation while keeping my potassium in a good range. Hence the need for blood work.

So I had blood taken on Monday. I’m having it taken today and I must have it taken again on Tuesday! The problem is that I have veins that are hard to get and we usually need several vials of blood for the tests.

Which is where feeling like a pincushion comes in. If the phlebotomist doesn’t listen to me and insists on using a straight needle if often takes at least two attempts to draw enough blood. If she uses a butterfly needle and listens, we can often hit it first time. I also don’t bruise as much.

I’m currently running out of elbow crooks for taking blood. I only have two arms after all! Which means that we’ll likely be moving to my forearms by Tuesday.

Hopefully following the protocol set for me by my respirologist, my potassium will stay within normal range and I’ll be off the supplements after that!

I just hope nobody looks at my arms in the next week or so…. as I look like I’ve been physically assaulted!

So please, phlebotomists when patients say that we’re difficult to draw blood from and please use a butterfly – please do as we ask. I know the butterfly needle costs a little more but probably not in reality as you can often use just one, rather than 2 or more straight needles as you get the stick first time. I also don’t bruise as much which is much nicer for me ūüôā

Remember, the motto in healthcare is meant to be – Patients First!!

Just give me a break….

So life is just so farcical that I couldn’t resist commenting on the adventures of the last day.

Over the years I have spent many hours, over many visits to Emergency Rooms. Last night has to take the award for the longest visit ever before being seen.

I had two issues that were causing me concern. The first is that I had an allergic reaction that I couldn’t get under control. It wasn’t quite anaphylaxis but I’d exhausted all my medications aside from an Epi Pen and wasn’t getting better.

I was flushed bright red, covered top to toe in red patachie (rash) and extremely itchy. I was also short of breath and my lips and tongue were tingling.

Secondly, my knee had been bothering me for about a day after giving way under me the day before. It was incredible painful and very oddly swollen so given my OI it was time to head in and get it checked out.

That was at just after 7:30pm. To cut a long story short Emerg was absolutely heaving. I was finally seen by a doctor at 3:45am! I didn’t get home until 6am.

In the meantime my allergic reaction had calmed down despite several exacerbations triggered by scents and perfumes in the waiting area. This was despite my being sat well away from everybody else. So with the addition of the nurse having the doctor authorise benadryl to make up for the night meds that I’d missed at home it had finally calmed down to my normal rash & flushing from just being around people and their scents and perfumes.

My poor knee was still very painful and swollen. Initially the doctor thought it was just a sprain but given his examination of my knee and my medical history we had x-rays taken. They weren’t conclusive so I’m being referred for an MRI and Orthpaedic consult within the week. In the meantime, I’m in a thigh-ankle splint to immobilise my knee and crutches.

I love these splints. Last time I had this type of injury I was in a plaster cast which was much heavier, and harder to swing around.

So while I wait to find out if I have a bone chip and / or damaged ligaments I’m even more restricted than I was before.

The irony of course is that I kept asking to ‘just get a break‘…. You really should be careful what you ask for. For I got a very literal answer!

Much as waiting so long in Emergency wasn’t something that I’d like to repeat I’d like to thank all the staff concerned for remaining professional and courteous throughout. Everybody ignored Kai as needed (aside from the X-Ray technician who was given permission to pet him and take him from the room while they did my x-rays). He was a superstar once more despite getting his own shots earlier that day!

So in contrast to some of my earlier experiences in Emerg. during this health journey I have to say that despite terrible circumstances all staff were professional, courteous and compassionate.

Thank you.

 

Updated Bucket List – Items #1-18

Last time I reviewed my new Bucket List I had 17 items and little progress towards any of them. However, I’m now delighted to report that I can cross off one item and have made significant progress towards three others:

  1. Coffee with a friend in our local Starbucks
  2. To be a bridesmaid
  3. To visit New Zealand
  4. To live on the ocean
  5. To own a Class B motor-home (Roadtrek ideally)
  6. Waist length hair
  7. Day-trip to Frankenmuth & Bronners
  8. Reschedule & enjoy my belated 45th birthday vacation
  9. Acceptance of RADS diagnosis and limitations that places on my life
  10. Despite RADS diagnosis, work on improving the quality of my life and work at getting back to work.
  11. A year long road trip following 70 degree (21 C) weather throughout the contiguous United States.
  12. Lose steroid weight and return to a healthy weight
  13. Get out walking, locally and a little further afield on walking trails and then snowshoeing as determined by the weather
  14. Visit Harrison Hot Springs in BC
  15. Go indoor skydiving
  16. Attend the Albuquerque International Balloon Festival
  17. Go on a picnic

Yesterday, with a great deal of help from my friend I was able to cross off #1. In fact we went a step further and didn’t just meet for coffee in Starbucks but we actually met for coffee in a small local mall. Thankfully, it doesn’t have a juice/smoothie vendor and the food court is small enough that between us we could keep an eye out for potential concerns.

On arriving at the Mall we had a quick review of how to give me an Epi Pen (just in case) and then had a small wander around the mall. My first time doing so in about 6 months. Unfortunately, the cleaning machine was out, and in use, for part of the mall and that scent was too strong for me to manage so I didn’t make it to the book store. However, we did have coffee! The cleaner in the food court very kindly agreed to clean the bathrooms while we did, rather than washing the floors and tables down, at that time. It seems that the cleaning services in the Mall all use a citrus/strong scented solution for washing the floors.

Kai alerted a couple of times that I needed to use my inhalers and ultimately that we needed to leave, due to scents and my reactions. I’m so proud of him.

Funnily enough having decided to make this alert extremely obvious while we were in the hospital (jumping on, & pawing at, my head literally) he remembered how to do it more subtly, but still insistently, yesterday. If I didn’t know better I’d think it was deliberate on his part as a few patients had commented on not seeing him working, not realising that his usual alerts are very subtle and not obvious unless you’re looking for them. He can’t really have decided to show off, can he?

I am so thankful to have a friend who was willing to ensure that she was completely safe (unscented) to be with me, and to then look out and advocate for me. Unfortunately I can’t often advocate for myself as I can’t get close enough to the scent to ask the person concerned if they’d help me out.

So #1 is completed! Though it will definitely stay as a goal to meet on a regular basis.

I’ve also made good progress towards items 9 & 10 (Acceptance of RADS diagnosis and limitations that places on my life & Despite RADS diagnosis, work on improving the quality of my life and work at getting back to work.)

It’s a fine balance. Much as it was great to get out of the house, and meet for coffee yesterday it took a lot of courage to do so and I needed a lot of help to make it safe enough.

It’s all about living in this moment.

In this moment there isn’t a citrus fruit or product in my vicinity so I enjoy it. I need to be cautious and take appropriate precautions but I’m not going to give up on life just because I know what could kill me & how likely that is. I could still get hit by that proverbial meteor!!

Oddly enough I’ve also made some progress towards items 6 & 12 (Waist length hair & Lose steroid weight and return to a healthy weight). ¬†I realised how much longer my hair has grown over the past year when I braided it for the first time in a while during my hospital stay and the braid came quite a lot further down my back. My hair is still very fine and my entire braid thinner than most people’s bangs…. but it’s growing!

Also, despite eating hospital food I actually lost some weight in the hospital. I’ve still got a long way to go to get back to a healthy weight , after the impact of the steroids, but I’m finally not going up every day!

So given my recent success in meeting item 1 I’m going to replace it with a new item. At least once a month, taking appropriate precautions, get out and do something social.

I’m also adding a new item to my list. At least once a day, do something creative. That could be as simple as writing this Blog or colouring. Alternatively it could enable my trying out a new craft, or one that I haven’t done in a while, or can’t do as well as I used to so rarely do anymore. It could be writing a poem, a story or exercising my somewhat limited artistic talents. It could also be cooking a meal or baking something that’s a little more complicated than taking it out of the box! Just because I’m only cooking for me it doesn’t mean that I don’t deserve to cook an interesting meal for myself.

So here’s my updated list. The items in italics are those that I’ve made good progress towards!

  1. At least once a month, taking appropriate precautions, get out and do something social
  2. To be a bridesmaid
  3. To visit New Zealand
  4. To live on the ocean
  5. To own a Class B motor-home (Roadtrek ideally)
  6. Waist length hair
  7. Day-trip to Frankenmuth & Bronners
  8. Reschedule & enjoy my belated 45th birthday vacation
  9. Acceptance of RADS diagnosis and limitations that places on my life
  10. Despite RADS diagnosis, work on improving the quality of my life and work at getting back to work
  11. A year long road trip following 70 degree (21 C) weather throughout the contiguous United States.
  12. Lose steroid weight and return to a healthy weight
  13. Get out walking, locally and a little further afield on walking trails and then snowshoeing as determined by the weather
  14. Visit Harrison Hot Springs in BC
  15. Go indoor skydiving
  16. Attend the Albuquerque International Balloon Festival
  17. Go on a picnic
  18. At least once a day, do something creative

How’s your Bucket List coming on?

NB. Please note that Epi Pen’s come in cases. So to use one you need to take it out of the case first. Then it’s…

Blue to the Sky, Orange to the thigh

Which means take the blue cap off and make sure that end is towards the sky, swing the pen and ‘stab’ the person with the orange end on the outside, fleshly part of their thigh (through their clothes) and count for 3 seconds. Call for an ambulance and paramedic service.

If there is a delay in getting emergency services you may need to give a second pen. Most people with severe allergies, and known anaphylaxis reactions, will carry several of them on them. I also carry inhalers and liquid Benadryl which can also help buy me some time.

The Epi Pen needle is on a spring within the orange section and the blue cap releases the safety catch for it. You are never exposed to the needle. So it’s completely safe for you to give to somebody else if they need you to.