Updated Rheumatology Appointment

Today I saw my rheumatologist.
I had not seen her since the Cimzia was deemed an allergy and off limits.
I knew it wasn't going to be good news, so at least I was prepared. I am happy with the plan going forward in the sense that it was what I was expecting. Or half expecting.

So, no more Cimzia. That one was a no-brainer. My throat swelling reaction was too severe to try staying on that particular medication. Turns out I am not an anti-TNF patient. My body just reacts poorly to it.

Then there is the question of the mind-numbing migraines after cortisone injections and oral prednisone.

What I am hoping is that it is a bit of an intolerance but not dangerous. That way, prednisone is not entirely taken off the table and I can still get cortisone injections once or twice a year to help with pain.
The only thing scarier than having to take Prednisone is having to take it but being unable to.
So, for now, we need to figure out if the migraines are a side effect or a serious/dangerous intolerance. Until that is figured out, no more injections, no more oral prednisone. (Fingers crossed I do not have any bladder inflammation in the meantime). So my rheumatologist is referring me to the headache clinic to discuss the problem and the protocol. There is a potential for seeing a neurologist and getting some imaging done to see if there is any damage in my brain.
Then, if they clear me, she will book more injections.

What if I can't get them? What if all cortisone and derivatives are now allergies? What about pain?

Well, there may be a new medication available in just over a year. BUT that medication is likely another biologic. The only anti-inflammatory I seem to be okay with is Methotrexate. I have allergies to ASA, NSAIDS, biologics, and potentially corticosteroids. Add to that an allergy to chlorine that prevents aqua therapy and I feel a little cornered as far as pain control.

So I guess I am hoping that we find out that the migraines are a severe side effect but not actually dangerous. Give me that. Just that. I can handle migraines with my migraine medication when I have to. Any more allergies to medications and I will feel in trouble.

Fingers crossed.

Corticosteroid Side Effects

Anyone who has ever suffered with inflammation of some kind has heard of Prednisone.
It is a corticosteroid that helps to reduce inflammation. It is used in various forms (cortisone, hydrocortisone, pills, injections, intravenous infusions, etc etc...) and is notorious for its wide range of uncomfortable - and often severe - side effects.
This medication can be a miracle-drug when inflammation is ravaging the body and threatening one's life, but it is also one of the most abhorred medication according to patients. It is the epitome of what is defined as a love-hate relationship.

Over the past year I have been suffering with the most severe migraines I have ever had.
While Prednisone is known for causing headaches, migraines could be cause for concern, especially when they are brought on by cortisone injections.
When we take tablets of Prednisone, the side effects are system-wide. They go through our entire digestive tract and are carried around the body, which is why every system can be affected by it. With cortisone injections, the medication is targeting one particular area. In that sense, the systemic side effects should be greatly diminished compared to the pill. With susceptibility to the side effects, the shot is a much more effective way to help reduce pain and inflammation in a joint.
So why are the migraines so much worse?

The concern, according to my physicians, would be an increase in intracranial pressure.
The only issue is, how do we test for it? A lumbar puncture. Yep. Not happening. At least not right now. A lumbar puncture is an invasive procedure that is considered to be one of the most painful diagnostic tests. Not only that, but the risks for someone like me are much higher when it comes to the procedure and the recovery time.
My new family doctor (who has been amazing) is mulling over the idea of ordering a head ct or sending me to a neurologist to discuss this conundrum of a situation and check for any worrisome changes in my brain.

The fear (apart from the chance of increased intracranial pressure) is the possibility of being unable to ever take Prednisone or Cortisone again. (See? Total love-hate relationship). Sure the medication is scary, risky, and uncomfortable, but it is a much more frightening thought to be incapable of ever taking the medication. It may have horrendous side effects but it also saves lives.
It reminds me of the dentist. I hate having to go to the dentist. It is uncomfortable, downright painful for me, even excruciating at times.... but if I was incapable of being able to get my teeth cleaned that would be a much worse situation.

So fingers crossed that it is simply a side effect of migraines and not a dangerous intolerance or pressure change inside my brain.
I am so lucky that I have an effective medication to combat the migraines. I can handle them during a course of Prednisone or for a couple of months after cortisone injections as long as I have my medication to relieve the intensity. Otherwise I would have been in the ER a hundred times over already due to this excruciating pain.

The only thing worse than having to take a pharmacy-stock worth of medication is not being able to take medications or remedies that help symptoms like mine.

Old Tricks

Growing up as a decent athlete means that I still have tricks and muscle memory for things that are much more difficult to learn as an adult.
I found out recently that the below yoga pose can be quite difficult.
To be honest, I didn't even realize this WAS a yoga pose.
These shoulder stands were something I learned when I was really young and going to gymnastics. It has always been something I randomly move into - on the floor, watching tv, on the bed - basically whenever I have an inkling to do something easy and yet a little active (engaging my core). Even more than that, being able to fold my legs over my head and get my knees to the floor has always just been a fun challenge. I never thought it was a legitimate yoga pose.

So apparently, the muscle memory from my athletic days and my commitment to trying to stay relatively flexible with some strength has allowed for me to surprisingly learn pretty difficult poses.
Because to me they are just old gymnastics tricks.

The only piece of advice I have for people doing these poses (that I failed to realize until it was too late), it would be smarter to do shoulder stands on a yoga mat sitting on carpet. Due to the hard floors, I feel a little bruised from those shoulder stands.
I am just happy that I can practice yoga again - I had taken a pretty long hiatus.
I am a little worried that once the cortisone wears off (especially if they reduce or remove me off of medication) the pain might be off the charts and take me out of practicing yoga again.

But we'll cross that bridge when we get there.

Better Appetite

I woke up today and my appetite was nearly back to NORMAL!!!! I was not craving food every single second of the day.
The increased appetite was most likely caused from cortisone, potentially Cimzia, or just randomly from a hormonal imbalance or something. Whatever the case - I am not raiding the fridge every five minutes.
It feels so much better to feel a little more back to normal.

Wednesday Night Yoga

After my recent Cortisone injections, my SI Joints are feeling a little less painful.
The relief is not jaw-dropping, but it is worth the pain of the injection. At least right now it feels worth it.

Feeling slightly better gave me a little bit of extra energy to do a little stretching.
My yoga practice is very very basic.
Yoga, like any other artform, takes practice, patience, and regular intervals to really induce the muscle memory and keep strength.
There have only been three or four specific poses that I can perform on a consistent basis, but tonight I am starting again with those poses, in hopes to increase my yoga repertoire again.

My biggest priority is paying attention to the physical cues my body gives me.
A little stretch, some heavy breathing, getting a bit of a sweat going, those are all positive things. An uptick in pain that does not feel like mild muscle stretching - yeah that's not so good.
Start low, go slow.

What I am focusing on right now is that today I am ABLE to do a little bit of yoga.
That's a total win in my books.

Cortisone

Okay so I have to admit that my emotional response to the cortisone injections have not been as severe this time around....

But holy hell my APPETITE and my SLEEP have been adversely affected bigtime.

Seriously.
I am so so hungry.
I am nauseatingly hungry.
I also know that my stomach is full.

Effin cortisone.
Messes with your whole system.
I am keeping my fingers crossed that the random psychological adverse effects wear off soon but that the partial pain relieving effects continue for a couple of months or even longer.
I know, I know, it's a long shot... but a girl can dream. :)

Dressing Up for a Procedure

Today I had another Cortisone injection into my SI Joint.
I wore a dress to this procedure.

Nothing fancy, of course, just a basic t-shirt sweater-dress, loose-fitting and super comfy.
SI joint injections are super painful. Usually I wear something like pajamas or leggings and a loose-fitting t-shirt.
Because I don't have to change into a hospital gown or anything, I don't necessarily need an outfit that is easy to get on and off, but it is a bonus if I can easily undress once I get home after the procedure. I have a pretty tough time walking/sitting/moving/bending/lying after these, so ease of dressing/undressing can be crucial.
So why a dress? Why not just sweats and a t-shirt?
A dress is super simple to hike up and expose my back for the injection itself, it doesn't have an elastic band that puts pressure on my spine afterwards, AND it looks nicer than a pair of big ol' baggy pants. Plus, I don't have to bend over to remove it once I am at home (like I would have to for pants).
At home, a dress or nightgown has the same benefits as I am lying down and resting, with tears in my eyes from the ache, especially now that the freezing has worn off.

It may have seemed like I was attempting to dress-to-impress, with curled hair (from the day before) and a nice sweater dress, but really it was the most appropriate option for what I needed today.
Technically I dressed up to get a needle in my spine.
Really, it was functionality.

Bad Dreams

Last night I had this super vivid and horrible dream.
I dreamt that Rj had bought a package of little tapioca pearls for me to add to my rice pudding... or so he thought. Then, after dessert we decided to go to a movie, but 30 minutes into the movie I started to feel awful. Suddenly I kind of gurgled up a bunch of the tapioca pearls. I could feel each one of them as they came back up my throat and gurgling out.
Pth pth pth pth pth pth.
We left the theater and (as the low-impact vomiting continued) Rj did a quick search on his phone. Turns out the tapioca pearls he bought were actually a deadly substance that can kill its victims within an hour. We race to the car - vomiting becoming worse - only to find out we had locked our keys in the car.
Pth pth pth pth gurgle pth pth
As Rj called an ambulance, the pearls were coming out in waves and were getting more and more red and with more sludge than just the pearls. Blood. Lots of blood. By the time an ambulance showed up, blood was just flooding out of my mouth, but I could still feel all the little pearls.

Such a weird nightmare.

I woke up drenched in sweat and had a super sore throat.. but I also woke up with"

A POOL of DROOL all over my face, arm, pillow and sheets. Apparently I was gurgle drooling. Like Jabba the Hut. Or Homer Simpson.
Luckily, Rj didn't notice or wake up, so I was able to clean myself up and let things dry before he awoke.

Bad dreams are pretty common if I have any cortisone in my system... and we had also done a lot of cleanig during the day so I (evidently) was kind of zombie'd out. Still strange... but funny!

After the Cortisone Injections

Well, as I am lying here 5 hours after my appointment, I definitely remember why I rebooked it.

Although the appointment itself was still brutally painful, and the ache in the right SI joint (the side they injected today) is pretty bad, there is already a difference.
It could still just be the freezing, so I am being cautiously optimistic, and it's not so much that I feel less pain, per se, it's more that the pain in my left SI joint seems to be a lot more prominent. I am guessing that my left joint feels more painful because the right one feels a touch less painful.
Only time will tell.
One more appointment and then after a couple of weeks I will know if it helps.

The doctor who injected me today as well as the nurse assisting were both really amazing.
My first time was awful, to be honest. It was rushed and no one had any idea how to deal with a nervous patient.
Today, I told them right away that I don't do well with these injections, that I will cry and might be a little shaky, but it's just from the pain. They were both really kind, really understanding, and talked through it all with me. Not only that, but the conversation to distract me when beyond regular small-talk (which I am not always keen on). Usually for me it's either - let's have a real conversation - OR - let me cry and breathe like I am going through labour in peace -.
But today we talked about This is Us, her kids, my hubby, and I even asked her if it is usual to feel as much pain as I'm feeling with this particular injection. The whole 'give it to me straight, is this normal or am I a total baby' kind of conversation.

As I look at the monitor and where the needle is inserted - you know, in between two bones in the space inside of the joint - I remember that going bone-deep with a sharp needle and having this substance injected in there is OBVIOUSLY going to be painful.

Either way, today was a painful appointment, but a good one.
I hobbled out of there, sniffling with tears running down my face, and Rj suggested we stop for Bubble Tea.
Now I am currently watching my PVR'd episode of This Is Us, grateful for health professionals who *get it* and who take just that extra second to be kinder.

Let's hope it's worth it.

P.S. This all made me wonder about if I will eventually get used to this kind of pain. The pain won't get better, but I will become accustomed to it and better equipped to handle it.
It happened with Methotrexate.
It happened with Lupron.
It happened with Humira, Enbrel, Cosentyx.
It happened with Berinert.
Who's to know - maybe in two years I'll be totally used to this painful procedure.

Preoccupying My Mind

The last couple of days I have been doing my very best to be preoccupied.
I have an appointment tomorrow.
To some people, getting a couple of needles into the joint space of the Sacro-Iliac Joint is not a big deal, but for me it is an excruciating procedure. It is fast and it is even deemed simple, but the first time I had it done was only 6 months ago, and the moment itself was awful.
It may have taken two minutes, but those two minutes are awful. Next week the other SI joint gets the injection. Not only is the procedure awfully painful, but the few weeks after the injection includes the emotional side effects of Cortisone, including mood swings, excessive appetite, and random fits of yelling or crying at absolutely nothing.

So why am I doing it again?

Well, the Cortisone helps mask the symptoms. It helps superficially reducing the pain for a while. Last time it seemed to help the pain for nearly two months. 
From what I can remember - at a time when a lot of different things were happening.
I am not positive at how well it helped. I am not positive that the pain of the procedure is worth the short-term relief. All that I know right now is that I made a point to ask for another appointment. So it must have helped. At the very least, it means that I want to try this treatment at least once more to analyze the benefits.

That doesn't make it any easier to go through.
It is an awful pain - just the freezing is enough to make me pass out. The very first time I blacked out - I can barely remember walking out of the office, let alone getting dressed and out of there.

So today, being as apprehensive and panicky as I am, I needed to preoccupy my mind.
Luckily (sort of) our fire alarm needed to be replaced so it was beeping this horrifically high-pitched beeping sound that had both Decker and I whining haha.
Then I worked on organizing photos from our wedding to share on social media (which took forever). Then, while simply sitting and relaxing with Rj, I could not sit still. After dinner, I started playing a card game, and still could not escape the anxiety. I did my Tuesday night injection and now I am watching Cinderella while writing this blog.
Preoccupying my mind.

I am terribly nervous, but it's supposed to be worth it.
Let's hope the pain is not as bad as I remember and that the mood swings are mild and short-lived.

Fingers Crossed.

Long Recuperation

Big events take long recuperation times.
Mistakes take even longer.

These days I am starting to feel more like myself since the wedding weekend. I am still recuperating - energy mostly - but I am getting there. We were able to enjoy Thanksgiving festivities over the weekend without too many tears from pain, which we are thrilled with.
At home, however, things are still slow. We still have not fully unpacked from the wedding and our basement is a total disaster with wedding supplies. We still want to get through all of the photos and post them and we both have lists of things we need to get done, things we need to pick up, but neither of us have the energy. We have been sticking close to home, resting for the most part, and just enjoying being together.

There's an even longer recuperation that is a little tougher to take lightly.
With new Cortisone injection appointments this week and next, it reminds me that one miscommunication/mistake is still wreaking some havoc.
6 months ago I had my first ever SI Joint Cortisone injections. I was informed that I could not be taking certain medications for this injection, and was told I would have to halt this treatment two weeks before the injection and then not begin them again until the second injection another week later. This treatment has been vital in helping to control my IBD.
Within three days being off of my vital medication, I had already lost quite a bit of weight, and my intestines stopped functioning normally**. I began experiencing symptoms (terrifying symptoms) that I had not experienced in years. Suddenly I was carrying extra clothing in my purse, I had to buy Depends, I could not eat much solid food (if any most days), and I even starting having incontinence during the day. Zero control. This is obviously in addition to the pain, cramping, blood, burning acid-like stomach discomfort, vomiting, and just general fatigue and weakness.
By the time the first two weeks were over, I was legitimately fearful of what may happen if it continued much longer. The idea of further surgeries, complications, or recuperation time was frightening. Was it even worth the short-term relief in SI Joint pain?
It took me and my physicians over 12 years and two major abdominal surgeries to get my intestines to the level of control I had. Before these injections.
So I emailed my GI specialist.
Turns out, I did NOT have to stop taking my medication for these injections because of the reason I am taking them. So I was able to go back on my treatment before the second injection.
By that point, there was some damage done.
It has been 6 months and I am still nowhere near the place I had been before stopping that treatment for two weeks.
Two weeks of missed medications and I am still recuperating 6 months later. At the rate things are going, I expect this resurgence of symptoms to slowly improve over another 6-12 months, if I'm lucky. Although the incontinence during the day has mostly improved, overnight issues still require Depends sometimes (although it is never predictable), and only in the last month have I been able to introduce more vegetables without a catastrophic fallout.
Even on our wedding day I had no more than 6 bites of food after 12pm. My intestines just could not handle it. Plus, I really didn't feel like risking urgency while in a puffy white gown that I had to step our of for each bathroom break. (Although I do have to admit that I am pretty proud of the system I had for my bathroom breaks). I'll write another blog about that alone.

Recuperation times are different for everyone, for every situation, for every disease. What is frustrating is when there is a miscommunication that results in looooooong recuperation times. It can be awful some days, and if I think about it too much I feel quite angry about it.

Hopefully it will improve over the next few months. Fingers crossed.

**normal function for me is bathroom breaks 10-15x per day, maybe an accident once a month overnight, but with good control throughout the day.

Sleepless Night - Again

There is a bright side to experiencing a night without sleep.

There are a few things going on: I have a major j-pouch flare-up, I have been using Cortifoam, and I have had an extremely difficult time eating and getting the nutrition that I require. I also that I cannot absorb the nutrition that my body requires.
Yesterday, the cortifoam had improved my symptoms later on in the day, which made it easier for me to eat. In a way, this is a really great thing. My shakiness and weakness were both improved after having a good meal, and I had more energy from the protein I managed to keep down. With fewer bathroom breaks I am certain that more nutrients absorbed.
This is really important.

Unfortunately, it also means that the food was bound to result in severe stomach pains and intestinal cramping. These pains were not severe enough for emergency treatment or anything, but they did manage to keep me up all night, rocking back and forth on the bed in the guest room as to not keep Rj awake (or make him vomit from motion sickness - the bed was basically a boat while I was rocking for hours on end).
It isn't that I wasn't tired, and it wasn't insomnia, it was simply pain and discomfort that I experienced because I ate a healthy amount of food yesterday.

Kind of a downer.
And yet it also means that the Cortifoam worked well enough to allow me to eat - to get past the immediate pains and urgency and nausea in order to absorb some nutrients.
That makes it worth it.
So the majority of the day today will be spent sleeping... hopefully... and if you see me, don't be alarmed if I have a zombie-like appearance -> in the way I look, move, walk, and even talk.

Hooray for Zombie days!

Prednisone Truth Talk

There is something about Prednisone that can be difficult to understand.

The basic understanding is that it helps inflammation and it comes with some nasty side effects. It does its job and can save your life, but you may struggle with the list of adverse effects while you are improving.

It goes much deeper than that.

For a disease like Ulcerative Colitis or Crohn's Disease, Prednisone can help with some of the inflammation. It can improve your systems and even go as far as lessening your pain. For some people though, it does nothing for the underlying disease.
It's like a headache that you have masked with loads of Advil. You know it is still there even though you can't feel it.
Or when you get pain killers if you break your arm. You can't feel it anymore, but you and your body are still fully aware of the damage.

Prednisone can sometimes make things feel better, but may not do anything beneficial as far as the underlying disease is concerned. It is still there. It lurks. Diseases can even progress further without you really even noticing.

Last night I did a cortisone enema. Certain specific symptoms are improved today - markedly improved in fact. I have been able to eat full meals today. I have not had any accidents and have only had to race to the washroom twice today (compared to the 19 times yesterday).
Contrary to what these improved symptoms show, I feel weaker, shakier, and have zero energy. I am wiped out and migraine-y and I am still terrified to eat. I know food will be painful - I know that digesting anything will be damaging.
But I don't feel it as much today.

It is great to feel less pain and to suffer from fewer symptoms... or at least notice improved symptoms. What is more difficult to grasp is the idea that nothing has changed. It did give me a bit of a break.
For some people, prednisone can reduce the inflammation enough (whether on a short course or a long term course) that the body responds and the disease itself begins to settle down.
For others, prednisone is just a band aid.

Today my pain and digestive symptoms have improved, but not the cause of those symptoms... despite the masking.

Prednisone.
A total mind bender.

Great Days!

The last few days have been great! Really great!

I had the honour, for the fifth year in a row, to be involved in the Crohn's Colitis Canada Fun Money Casino Night (previously the Gala).
Apart from the recent allergic reaction that irritated my throat, I was still able to sing and play piano during the eating and casino table portions of the evening. Due to fatigue and pain, I had to take a few more breaks, I needed lozenges all night, and I had to end a little earlier, but I still loved every minute of it.

The following day, although I was experiencing an 'energy hangover', we had breakfast all together as a family and then spent the majority of the day napping.

Today has been particularly good. With the improved weather, my mood has also improved. Other than a pretty severe headache, I had quite a bit of energy and did not require my cane as much today. I managed to rely on a shopping cart to help ease my hip pain, and my shoulder blades didn't start complaining until later on in the day.

The best part is that my emotions are improved today. That is the most impactful part. My emotional compass has been going haywire for the last couple of weeks, and today it just settled right down.
I am hoping that I am back to normal again emotionally ... hopefully ... and that even more great days lie ahead.

Emotional Rollercoaster

Overall I would say that I am fairly even-kilt when it comes to my emotions. I wear my heart on my sleeve, so I get really into books and movies and what not and usually shed a tear or two during really emotionally raw moments. I don't feel legitimately angry very often, I don't think I lose my temper much (not anymore at least... I had a bit of a temper about 10 yrs ago for a while). Finally having well-balanced (or nonexistent) hormone levels definitely helps.

When I am on a corticosteroid, however, I can feel my emotional track winding and transforming into this insane rollercoaster.
Yesterday I was in the bathtub... crying... for absolutely no reason. I wasn't even watching anything!! And then all-of-a-sudden I could feel my blood boiling and I was furious about something like a missed phone call or that I forgot to get myself a bath bomb. Seriously. Ridiculous!!
I am having sweating fits and my thighs have these little red bumps and my sleep has been negatively affected and I am bloated and swollen and sweaty and I will burst into tears over NOTHING! I tried on a dress last night and was disappointed that it did not feel comfortable enough to keep. That's why I cried. I am an emotional mess!!! (However, I would like to point out that I don't think I was the only person who actually yelled at their window when they woke up to another blanket of snow yesterday... that reaction appeared fairly justified).

The lucky part is that I have had so much experience being on corticosteroids before that I have the wherewithal to know that these reactions are not my true reactions. The base emotion might be correct, but it is so far beyond exaggerated that it feels like a circus.

I mean, I finally am without my female organs and it feels like I am PMS-ing all over again.

Now, I am still optimistic. I think that these side effects will only be really noticeable for the first couple of weeks after each injection. So as long as the medication helps my SI joints for longer than a few weeks, I am hopeful that I will reap the benefits without the extreme nature of these effects for a few months each time I decide to do this. Only time will tell. And really, what other options do I have? (None. The answer is none.)

My Second Cortisone Injection

Having done this once before, last Friday, I was much less nervous.
Let me rephrase that, I was still very nervous, less petrified.

Of course, as irony would have it, the day that I needed hand-holding and a compassionate hand, the whole thing was rushed and felt like I had no time to just take a breath... but the day I was not having a panic attack, there was a lineup, I had time to fill out the entire form, and the nurse and techs were very calming and extra compassionate. Perhaps they put on a note on my file stating how much of a mess I was last week.

Now, with that said, the procedure itself was fairly quick, but still hurt. Really hurt. I thought maybe my perception of the pain last week was worse just because of how petrified I was, but nope -> these injections hurt like hell. The pain of both needles (the freezing and the cortisone) are both much worse than Lupron injections, and possibly worse than that one Botox injection I got in my pelvis.

The main question though - does it work?
If it works, the pain just might be worth it.
I won't be able to clearly tell whether or not it works for several days, but I am optimistic.

This time it was also a bit different because I was facing the monitor that the doctor uses to watch where the needle is inserted and where the medication spreads to. To be honest, I couldn't watch it the whole time - the pain took all of my focus and I was just trying not to move, flinch, contract any muscles, and just trying not to freak-the-hell-out from the pain. I did kind of feel like I was in an episode of Grey's Anatomy - you know where they watch the monitor and thread a needle into a space and see the dye injected in the proper area? Very cool.
Very very cool, in a 'I-wish-this-was-less-painful-or-happening-to-someone-else' kind of way.

Now the other question is - did I bawl my eyes out? No!! I didn't. I cried a little, maybe even sobbed a bit.
Wanna know the best motivation to try and avoid crying?? Spend a while doing your eye makeup. Then you'll wanna suck those tears back so your hard work isn't ruined.
A small way to help myself from crying too much.

I guess we'll find out if these injections were successful and worth the pain within about a week.
It would be nice, considering I may not be on Cosentyx for very long either. 

Eating Oops

So, I feel slightly better today (yay!)

After speaking with radiology, as well as my GI specialist, it was decided that going off of antibiotics in order to do the cortisone injection was too detrimental to my health. So I was allowed, as of yesterday, to go back onto my antibiotics. I will still have the cortisone injection done on Friday, and potentially subsequent ones done in the future, but I will be allowed to stay on my antibiotics, since removing them from my medication regimen is, very obviously, too damaging.

Feeling a bit better today from going back on my regular medication, I wanted to eat more.
Here's the problem:
For the past two weeks, I have been lucky to have more than one or two Boost per day, plus some soft foods. I would manage to consume approximately 800 calories if I was lucky (mostly from liquids), and I would absorb about half of that (if I am being optimistic).
So when I got excited and ate about 400 calories in one meal today, my body got pretty angry with me. I am still technically only sitting at about 700 calories for the day (240 of it including my breakfast Boost), so 400 in one sitting is far too much.

So now, even though I WAS feeling better overall, I am now super sluggish and feel physically ill from eating too much.

I just got so excited!!

Oops.

My First Cortisone Injection

Alright, so today was the day.
If you have been following along at all, you'd know that I have been probably uncharacteristically nervous about this appointment.

I mean, it is a needle going straight into my spine -> into the small space of the SI joint. Actually, two needles. One for the freezing and one for the cortisone itself.
Into my inflamed, damaged, eroding, SI joint.

Before the appointment I had spoken to my doctor and a nurse about taking a specific medication that acts as a relaxant and very slight sedation because of how utterly terrified I was for this procedure. I was told to arrive about half an hour early so that I could take that medication in the clinic itself before the procedure. I arrived early (as always) and explained to the receptionist WHY I was so early and that I had to take the medication yet.
I sat down, started filling in the form regarding allergies, negative reactions, and history, but before I was even halfway through the first page, my name was called.
Now, normally I am more than okay with being called back early. Really, who complains about their appointment being finished early? They got me in immediately -> the one time that I truly needed that extra 30 minutes to mentally prepare myself.
The moment before my name was called was when I was able to swallow back my medication.
Then I was taken back into a room to discuss the rest of the form. She quickly rushed through the 'possible complications' and the post-procedural instructions (which I had to write down because I would not receive a copy after signing it), and then I sat in another chair. Within 45 seconds I was called into the room.

Let me explain some of this.
I was petrified.
I wasn't just a 'little bit nervous'.
I kept envisioning that needle being inserted into the most painful part of my body. I kept imagining a 3" long needle being inserted into my spine - my inflamed and damaged joint.
Essentially - I was completely stressing myself out.

So I get in the room and IMMEDIATELY burst into tears. Like a total wuss. I explained that I was incredibly nervous and that I would likely cry through the entire thing.
My pills would evidently not even kick in before these needles and I NEEDED more time to mentally prepare, but I would not get it. The tech was so shocked at my fear that we just avoided eye contact and did not talk much at all... I was instructed to lie face down on the table, I took a breath, and the doctor came in. 
I reiterated my apprehension and that I was very scared, and they kind of just chuckled. I tried making jokes:

• that I do three sub-q injections a week, so why am I so scared for this?
• I used to get scopes without any sedation at all, so this should be nothing?
• People get these injections all the time, and everyone says it's a piece of cake...

But here is the truth:
As embarrassing as it is to admit, I needed a little more figurative 'hand-holding' today than I got.
I needed that extra time in the waiting room from being so early to prepare myself.
I needed someone to tell me the TRUTH that it DOES hurt and that I am justified in being nervous.

It hurt.
A lot.
The freezing hurt but the cortisone injection itself hurt more than anticipated. Actually, that's not quite true, it hurt about the exact amount that I was concerned it would. The pressure and pain shot out through to the edge of my right hip and through the right side of my pelvis. It was that deep internal joint and bone pain that we are not supposed to be able to feel. The depth of that pressure made me nauseous. The pain was unpleasant, to say the least and the injection itself was much slower than I had anticipated... mostly because no one really discussed the process much with me. Oh and the medication I took to help me relax and help me to endure the appointment - it didn't kick in until after it was over and I was on my way home.

But here's the thing - it wasn't as bad as a lot of other procedures and injections I have had before. I would prefer this procedure over many others. Next week when I go to get the left SI joint done (they had to do the right one first, apparently), I will be much more prepared. I will be mentally and physically prepared, and I will know what to expect from the clinic itself. I will expect to be one of a long list of patients getting the same thing done. I will expect minimal talking and virtually no reassurance.

What was missing today was compassion mostly. I fully admit that I was a wuss. I was even irrationally terrified. I understand that I was probably one of a hundred patients having this done today - that this doctor does these injections a hundred times a day. This is an every day occurrence for them.
For me, however, it was my first time.
A needle into my gd spine.
All I wanted was to be able to take a breath and not be rushed through something I was so incredibly stressed out about.

(Let's not forget that when I get too stressed out, I run the risk of having a major swelling episode. Yeah, that concern did not help my uncontrollable weeping. Seriously).

So, if you have Ankylosing Spondylitis and you are contemplating having Cortisone injections into your SI joint -
1. Yes, tons of people get this done all the time. It is a relatively simple procedure and is performed on a regular basis.
2. It is painful. Not horrendously painful, not so bad that you need to be sedated, but enough that you might be gripping the pillow and breathing through the process. It is a needle all the way into your most painful joint... that alone should provide evidence enough of pain.
3. You will be sore afterwards. Some people experience soreness for a few days, but some people also experience relief almost immediately from the actual inflammation. It varies, but expect to be a little sore, just in case.
4. If you are scared - you are not the only one. I was blubbering like a damn child today. Don't allow anyone to make you feel ashamed for being scared of a NEEDLE GOING INTO YOUR JOINT.
5. I guarantee most of you will handle it better than I did my first time.

Next Friday, Friday the 13th as it were, will be my second injection - into my left SI joint. At least I will know what to expect. Hopefully I will experience some relief. And I will make sure to take my medication before I even arrive. Just to be on the safe side.
Tonight, because I am a bit bummed, and sore, I plan on ordering in, lying in bed, and cuddling my puppy for the rest of the night.
Tomorrow will be a better day. :)

Friday the 13th

So - good news!

The appointments for the cortisone injection into both of my sacroiliac joints have been scheduled, and they are coming up soon, one week apart. I have spoken with a few Ankylosing Spondylitis veterans who have informed me that the reward is well worth the pain of the injection, so I feel much better and definitely more optimistic. Cautiously optimistic.

For these injections I do have to be off of antibiotics for two weeks prior. That means three weeks without antibiotics. It doesn't sound like much but it will likely result in some pretty severe skin staph infections as well as a potentially moderate to severe pouchitis flare. Nothing I can't handle, just a little bit of a nuisance.

And, of course, the second appointment is scheduled for Friday the 13th.

Good thing I am not superstitious...
Right?

Cortisone Injections

At my follow-up appointment with my rheumatologist this afternoon, we discussed how the new biologic is working and what my options are.

Although I have seen some mild improvement (like spikes being a couple notches less intense, and in the level of pain in my shoulder blades), I was told that it should be helping my pain quite a bit more.
Here's the problem: I don't have many options.
I have had allergic reactions to Remicade, Humira, Enbrel, Simponi, Imuran, 6MP, Advil, Ibuprofen, Oxycodone, Celebrex, among others, so my choices are limited. Not to mention that I am almost positive that I am already beginning to react to this new medication. Last month, for instance, a few days after the injection I had a major throat swell. During that time I was also under SEVERE stress and I had a dental appointment, which is widely known to cause throat swelling in most HAE patients. It could be that the combination was too much.
With that said, my latest injection was on Monday, and I am currently pretty swollen all over my body and I feel as though one bad day could put me into another episode very quickly.

So, even if I don't develop (or have not yet developed) an allergy, it is apparently still not working at the level that it should, and we are essentially out of options at this point. There is one option: My rheumatologist has sent in a requisition to radiology to undergo an Ultrasound-Guided Cortisone Injection riiiiiiiight into both SI joints.

And I am being a baby about it.

I am terribly nervous. Just imagining the size that needle must be and how much that joint already hurts, just the simple thought of a needle going into a joint or a bone makes me quiver.
I know that other people do it all the time and have told me that it "isn't all that bad" and that the pain relief will make it worth it, but I would still much rather be sedated. Like a total and complete wuss.
I can be strong about a lot of things - I mean I give myself injections into my abdomen three times a week - but big scary needles freak me out.
I have no idea when the appointment will be, but I am sure I will tell you all about it after the fact.
Fingers crossed.
Wish me luck!!