Where Have I Been?? & The Spoon Theory…

Hello! I’m sorry for being MIA for so long everyone, it has been an eventful couple of weeks over here and once again another week has come and gone with no blog post.  So, I’m going to use this time to play a bit of catch up with you all and to talk a little about the theory I use to gauge my chronically ill life.  More specifically “The Spoon Theory” that was created by a fellow chronically ill woman by the name of Christine Miserandino.  I hope to be back next week with a really good post for you all to enjoy as I should have a bit of break from appointments, etc.  That being said, here we go!

Sunday, March 5th I was dropped off at the emergency department suffering from my usual symptoms of pain, dehydration, nausea, vomiting, etc.  I usually push it as long as I can to stay home so by the time I hit the ER, I really need to be there.  I was seen by an ER doctor who has treated me more than once so she was right on the ball with ordering blood work, IV fluids and medications.  I spent the whole day in the ER praying that my “bandaid” solution would work again and I would be able to go home.  Unfortunately, after eight hours, there really hadn’t been any improvement so at that time my ER doctor decided to admit me as a medicine patient.  Disappointing? Yes.  Somewhat relieved? Definitely.  I was so sick, I sometimes really forget how bad my flares can actually be.  Anyways, the goal was to stick with IV fluids and medications and hopefully give my system a rest and then I’d be good to go.  Now the other goal, the really important one, was to avoid steroids if possible!  At this point I was only one dose into my Humira but I wanted to try everything else before going the steroid route.

So, as the week went on, things were going pretty good.  There were a few bumps here and there but overall I was improving.  Then the dietician decided we should try food…I wasn’t keen on this suggestion but figured I would see where it went.  The theory was it would be better to trial solid foods while admitted so that way they could intervene if things didn’t go well.  So I agreed (which in hindsight I should not have done) and they started bringing me meals.  The first day I tried some gluten free cereal and a gluten free muffin (two bites of each), wasn’t horrible.  Then lunch came, some sort of pork (I think?), steamed broccoli and I’m pretty sure mashed potatoes, I passed on that one.  Dinner was no better, gluten free bread with chicken salad (I think, again it was grey so who knows) with some fruit.  I gave it my best shot and then totally regretted it within 20 minutes.  So by the time I saw my hospitalist, I had backtracked a little and he fully agreed that we needed to go back to full fluids and stick with what was working.  Something about hospital food, it sucks and if you’re someone who is having difficulty eating, it really doesn’t entice you to want food.  I was also served a non gluten free fluids tray and I almost ate it! That was angering to me but it was dealt with after the fact and hopefully they will be more careful in the future.  I am just SO glad I didn’t eat any of it!  After the food debacle and going back on full fluids I again started to feel better so on Saturday, March 11th my hospitalist discharged me to go home!

I was packed up and ready to go as soon as my Mom showed up to drive me home.  It felt so good to get home, have my own things, my own shower, my own bed, etc.  Saturday afternoon/evening I started having some abdominal pain, nothing crazy but definitely annoying.  I figured I was just adjusting to all the commotion of being admitted and then finally getting home.  So that night I went to bed and didn’t think much of it until I was still up in the middle of the night due to the pain.  Sunday morning the pain was constant, stabbing, I couldn’t do anything to make it feel better.  So, I weighed the pros and cons, called Telehealth and then called Ryan to drive me to the hospital.  This time there was no waiting, I was triaged quickly, put in the acute care area, blood work drawn, IV in with fluids running and then the dreaded order, IV steroids….I was really hoping to not have to go on steroids again but I was in the situation where there was no choice anymore.  After about six hours, they agreed to let me go home with a prescription for 40mg of Prednisone for five days.  Ryan came by to pick me up and we got my medication filled at the pharmacy and headed home.  Now, for anyone who has not had the pleasure of being on steroids, it is not fun.  For instance, Sunday night I was up the whole night, I felt like I wanted to jump out of my skin, I was tossing and turning, pacing, it was awful.  Monday night I slept on the couch because I just could not relax or get comfortable no matter how hard I tried.  So all of these wonderful symptoms/feelings got to continue for the rest of the week while I was taking the Prednisone.  Any who, they did their job regardless and got me back to my “normal”, I then followed up with my GI specialist who decided to start me on a medication called Cortiment.  It is a new medication that is similar to Prednisone but supposedly won’t cause the same severe side effects; I’ll be crossing my fingers on that one.

After all that excitement, I just laid low for the week, resting and recovering.  I still do not feel too great, I have widespread pain and so much more going on.  They’re hopeful that my Humira will kick in soon and that this Cortiment medication will help ease some of the issues I’m dealing with in the meantime.  I only started the Cortiment on Tuesday so I probably won’t know for at least a week or two whether or not it’s going to help.  So that pretty much sums up why I haven’t been posting much lately, I’m still excited about the blog and I’ve got some good ideas of posts that I’ll be digging into this week.  All of you that are following along hang in a little longer, I appreciate you all and I hope that you’ll look forward to my next post!  Also, thank you to all of you that sent text messages, emails, private Facebook messages, etc. while I was in the hospital and over the last couple of weeks while I’m still unwell.  They mean a lot to me and it brightens my day to hear from you!

The Spoon Theory

Some of you may have heard me use the terms “spoonie”, “spoons”, “spoonie sister”, etc.  So I thought I would give a little more information about what that all means! As I mentioned at the beginning of this post, The Spoon Theory was developed by a fellow chronically ill person by the name of Christine Miserandino.  She used a handful of spoons as a simpler way to explain to a friend of hers the limitations that chronically ill people face.  The terms “spoonie”, “spoonie sister”, etc. are just nicknames derived from The Spoon Theory for chronically ill people and the chronically ill friends they have made.  The theory basically says that each day everyone starts out with lots of energy to do all of the things they want to do.  Whereas, a chronically ill person gets to start their day with a handful of spoons (the spoons represent energy).  Now someone who is a healthy, average person can go ahead and do everything that they normally do in a day with no worries and not even a second thought about energy, fatigue, etc.  For someone with a chronic illness or illnesses we get our handful of spoons each day but we have to consciously be aware of how we are “spending” our spoons.  Even a simple task such as making a cup of tea uses up “spoons” and taking a shower, getting dressed, etc.  The more spoons we “spend” on tasks, the less we have for the other things we need to do throughout the rest of the day.  A chronically ill person could push themselves to do more by “borrowing” spoons but then it’s important to know that we will now have fewer spoons for the next day.  This also helps to explain how one day I may seem like I’m doing very well but then I’ll be in bed for three days straight, I’m constantly thinking ahead and deciding what my priorities are because I can’t do it all anymore and I can’t wear myself out trying too or else that will continue to allow things to get worse for me.

That’s all for this week! I will attach a PDF explanation of The Spoon Theory that Christine put out on her website.  Give it a read; it truly is a good way of explaining energy levels for the chronically ill.

Wishing You All Health & Happiness,

Lyndsay

The Spoon Theory PDF

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