Self Care = Must Care

I have never been the poster child for self-care.  I say “yes” to too many things, I don’t say “no” often enough, and I must confess, I haven’t been to a rheumatologist since before I moved back to Michigan from New York.  It’s probably been at least eight months. 

I had to be on call for work for the first time.  It was hell.  Starting on a Monday, I was on call from 5:00 p.m. to 12:00 a.m., then on again from 5:00 a.m. to 8:30 a.m. during the week, just in time to go to work, and the cycle repeated itself.  On the weekend, I was on from 5:00 a.m. to 12:00 a.m.  This was for an entire week.  And by the end, I was flaring for the first time in years. 

For at least two weeks after, I was on a downward spiral. 

Then…I went to Miami for a Pharma event…

Physically and emotionally, I was really in no condition to go.  But I didn’t feel like it was appropriate to let the organizers know on Thursday that I wouldn’t be able to attend something that began on Friday.  Next time, I will trust my intuition, and cancel, even at the last minute if I have to.

There were a lot of issues, and I didn’t stand up for my needs:

1)      I had a very early flight out on Friday morning – meaning that I had to get up at 4:00 a.m. to get to the airport. 

2)     I was basically only supposed to be in Miami for 36 hours and was supposed to fly back to Michigan on Saturday.

3)     The heat and humidity in Miami was terrible.  If I wasn’t flaring before the trip – which I definitely was – I was definitely flaring after. 

But wait, there’s more…

The gate for my return flight was changed four times.  I ran through the airport, which is comical because I cannot run.  And literally could not breathe after the first gate change.  My flight was delayed for three hours and was ultimately canceled.  I spent the night in the Miami airport.  I didn’t sleep.  I spent six hours standing and waiting in line to attempt to talk to someone from customer service at American Airlines.

I rebooked my flight over the phone, but the options were less than ideal:

1)      Wait a full 24 hours and fly out on the same flight I was scheduled for originally, but the next night – No way was I taking a chance of getting stuck in the Miami airport for another night.

2)     Leave Miami at 7:00 a.m. Sunday, take a plane to Charlotte than a flight to JFK and then arrive in Detroit at around 4:00 p.m. – I not very calmly explained to the person on the phone that I have lupus and RA and there was absolutely no way that I could navigate multiple airports in the condition I was in, and that was before standing in line for six hours.

3)     Leave Miami at 8:00 a.m., fly to Philadelphia with an hour to make the connecting flight, and arrive in Detroit around 1:00 p.m. – I ended up booking this flight, but realized that there was a high likelihood I would miss my connecting flight

Ultimately, I ended up booking a flight Sunday morning on Delta.  I had to wait until security opened and then had to walk all the way to another terminal.  I was planning on asking for some sort of transportation when I got up to the customer service desk for American Airlines, but that never happened.  I had to make the choice, being five people from the front of the line, of waiting in line and taking the risk of missing my Delta flight, or getting out of line to make the trek to the other terminal without ever having talked to anyone from American Airlines. 

That Monday, I didn’t go to work.  I could barely walk. 

I swear, I recovered just in time to take a work trip to Boston. 

I’m starting to understand that taking care of myself isn’t always going to be the popular choice or make other people happy.  Some people might even feel inconvenienced or disappointed.  But if I’m going to be successful at anything in my life, I need to take care of myself, first and foremost. 

I’m learning that doing me is more important.  This is hard for me because I feel like I have totally fallen off of the blogging and advocacy bandwagon.  But after putting my body through so much, I’ve had to try and take it easy as much as possible.  It’s hard for me to slow down, but my body has forced me to do so. 

Hopefully if there’s anything I take away from these experiences, it’s to know my limits beforehand and avoid situations like this altogether, if at all possible.  I know that taking the earliest flight out and latest flight back makes no sense for me.  I know that having a turnaround time of less than a day doesn’t work.  I know what I can handle.  I know what is realistic, and in the last several months, I have put myself in completely unrealistic situations.  I have set myself up to fail.  I have to care about myself more and love myself enough to have the confidence in making decisions that are right for me.  Because if I don’t look out for myself, no one else will look out for me.       

Gifts For Chronically Ill People

RA Guy recently spearheaded the Hope Care Package Exchange.  The rules were simple.  You would have one person assigned to send you a care package, and you would be assigned one person to send a care package to.  There was a $20 to $25 limit on each package.   

I wanted to send a care package that had some fun, but useful, illness related items. 

Here is what I sent in my care package:

C.O. Bigelow Hand Sanitizer – http://www.bigelowchemists.com/bath-body/hand-soaps/c-o-bigelow-lemon-anti-bacterial-hand-gel-no-1020.html

Ouch! Big Girls Don’t Cry Band-Aids – http://www.funslurp.com/ouch-big-girls-dont-cry-band-aids or http://www.amazon.com/Big-girls-dont-cry-plasters/dp/B002EVGIV8

Spa Sister Eyelid Gel Mask – http://www.amazon.com/Spa-Sister-Eyelid-Gel-Mask/dp/B005GXQNDO

Human Gear GoCup – http://store.humangear.com/dp/B00AFMEPV8 or

http://www.bigelowchemists.com/brand/humangear-gocup-collapsing-cup-small.html

“Thank You For Existing Card” Tiny Card – Emily McDowell Studio – http://emilymcdowell.com/products/145-t-tiny-thank-you-cards-set-of-10-thank-you-for-existing (This is the same person who has gotten a ton of press for creating Empathy Cards for those with chronic illnesses)

With the exception of the cards, which I bought online, I bought everything in the care package that I sent at C.O. Bigelow.  They only have one store, which is located in New York, but they also have an extensive website, although it does not include every product that they sell in the store.

I had a lot of fun picking this stuff out.  Honestly, I love giving gifts.  I like making other people happy.  Even when my wallet is running on empty, I get more joy from gifting others than I do from gifting myself.  

  

Here is what I received in my care package:

Jack Black Intense Therapy Lip Balm SPF 25 – http://www.amazon.com/Jack-Black-Intense-Therapy-Natural/dp/B000MIH34Q/ref=sr_1_1?ie=UTF8&qid=1438736655&sr=8-1&keywords=682223030042

Scented (French Lavender) Soy Wax Aromatherapy 8 oz. Massage Candle in Square Tin – http://www.amazon.com/Scented-French-Lavender-Aromatherapy-Massage/dp/B00UY1PEM4/ref=sr_1_fkmr0_1?ie=UTF8&qid=1438736708&sr=8-1-fkmr0&keywords=LA-40VC-5TRK+083351123666

Two Old Goats Lotion Foot Balm – http://www.amazon.com/Two-Old-Goats-Lotion-Foot/dp/B0091H9XI8/ref=sr_1_1?ie=UTF8&qid=1438736745&sr=8-1&keywords=689466107043

This care package came with the following note, as it was sent from Amazon.  

  

This is actually a great idea.  If you have favorite products you want to share with someone else, and you know exactly what they are, you don’t even have to leave the house.  You can simply go to Amazon, order them, and have them sent directly to the recipient. 

I’ve never tried any of these products, so I am excited to try them!  

  

I also recently had a chronically ill friend who was hospitalized, so I took a care package to her.  It’s easier to give a care package in person because then you aren’t really limited in the size of what you take, whereas when mailing, shipping has become pretty expensive, so I try to keep those things small. 

I know my friend was interested in adult coloring books, so I took her a coloring book and markers.  I also know that my friend is really into Korean beauty products, so I bought her a few of those, as well.  When assembling care packages to people you know rather than strangers, it’s easier to be a bit more personal and targeted in what you include. 

Stress Less Coloring: Paisley Patters – http://www.amazon.com/Stress-Less-Coloring-Patterns-Relaxation/dp/1440584877/ref=sr_1_1?s=books&ie=UTF8&qid=1438782066&sr=1-1&keywords=stress+less+paisley+patterns

Crayola Super Tips Washable Markers 20 Count – http://shop.crayola.com/art-and-craft-supplies/markers/washable-markers/washable-super-tips-with-silly-scents-20-ct.-5881061020.html#prefn1=craProductType&prefv1=Super+Tip&start=1

Tony Moly Brightening Mask – http://www.urbanoutfitters.com/urban/catalog/productdetail.jsp?id=32482259&category=BRANDS&color=072

Tony Moly Hand Cream – I purchased Cocoa scented but could not find online.  My second choice was Peach –http://www.urbanoutfitters.com/urban/catalog/productdetail.jsp?id=31754682&category=BRANDS&color=067

Finally, I currently have a friend going through some significant health challenges.  I wanted to change it up a bit and get her something that was more meaningful than giving her products she could use as she’s going through a lot right now and I didn’t want to overwhelm her or assume that she is knee deep in knowing that she is ill.  I wanted to get something that was inspirational but not religious.  A care package, per se, like the others, didn’t feel quite right in this situation, so I went with: 

Willow Tree – Thinking of You – http://www.willowtree.com/Thinking-of-You/26131,default,pd.html#start=17&sz=12

 

I don’t share all of these different things to toot my own horn about the gifts I give.  I did this because I love gifting people, and especially when talking about chronically ill people, I wanted to do something that would brighten each person’s day just a little bit.

And I wanted to give you ideas of what kinds of gifts you could give to the chronically ill people in your life – or even for yourself – for you, from you! 

Maybe I Wasn’t Born To Run – But I’ve Got To Do Something

I recently got an idea in my head that my boyfriend and I should train for a duathlon.  A duathlon involves two out of three events between running, biking, and swimming.  I decided that swimming was totally out because I’m not a swimmer and don’t really enjoy the water.

The great thing about a duathlon is that the run is “relatively short”.  The specific race I was looking at was a two mile run, eight mile bike, and two mile run. 

To be clear, this was something that I wanted to do for myself, not in competition with anyone else.  I have been struggling with exercising ever since my dad died, so I thought that maybe having a concrete goal would be the motivation I needed.

So a few weekends ago, my boyfriend dragged me outside for a run.  We walked most of the way.  Try as I might, the running just sucked.  There’s no other way to put it.

I was so frustrated.  Even though two miles isn’t that long of a run for most people, I could barely run a block.  My boyfriend was very encouraging in telling me that I ran more than a block – it was more like three blocks. 

Three blocks does not two miles make.

I have never been a runner, not even pre-illness.  So why force myself to do this?  I don’t know.  What seemed like a good idea before, doesn’t seem like a very good idea now.  It seems stupid.

Who am I kidding?  I can’t compete in an athletic event.  I can barely run three blocks.

I’ve been inspired by blogger friends who are super athletic, but I’m realizing I have to get my own thing.  I guess right now, now that I’m no longer a student, I don’t know exactly what that is yet. 

I’ve considered simply walking the duathlon, rather than even try to run it at all.  Would that be such a bad thing?  Especially if I’m just doing this for me?

So I’m making a pledge to myself.  I’m starting small, going back to the basics.  I’m going back to my walk aerobics DVD, the one I used to do religiously, which kept me in the shape I wanted to be in. 

I guess somewhere along the line I got it in my head that that walk aerobics was for middle-aged women (no offense).  I also think that I became self-conscious doing it around my boyfriend – silly, I know.

The two mile walk takes 30 minutes and the three mile walk takes 45 minutes.  I have that time.  I’m unemployed, at the moment.  And I don’t have any excuse – not that it’s raining – I don’t even have to leave the house.

I have weights and a stepper in the closet.  They have never seen the light of day.  I bought them with good intentions, but even good intentions with no motivation spells disaster.

I don’t feel good about myself for a variety of reasons, but that’s another post.

So no more excuses.  I’m holding myself accountable.  It might not be running, but you’ve got to start somewhere.  And this lady is the most out of shape she has ever been.  I went from being a size zero to barely holding it in, in mediums (sigh).

Methylprednisolone was one of the worst things to ever happen to me.  I have what seem like permanent stretch marks on areas of my body that shouldn’t really have stretch marks.

So I might not be running.  I might barely be walking.  But I’m getting up and doing something.  If I don’t help myself, no one else will. 

Can Subscription Services Be Helpful For Chronically Ill People?

For those who aren’t familiar with subscription services, there are online companies that you can pay for a subscription for a given type of item like food, makeup, and clothes.  The items are sent directly to your door.  There are so many subscription services out there now that you are bound to have heard of one them.

I have used two subscription services – Hello Fresh (food) and Stitch Fix (clothes). 

***

Hello Fresh

Hello Fresh is a subscription program where you get meals sent to you.  To be clear, YOU have to cook the food.  They send you recipes and basically all of the ingredients needed for each recipe and you make the meals yourself. 

This is great for people who may know how to cook but never know what to make.  For chronically ill people, this doesn’t exactly help if you don’t have the energy to cook.  But if you have a spouse who can cook, this saves time by not having to go to the grocery store. 

They have both a classic box and a veggie box.  You can get three meals for two people or three meals for four people.

I got a Groupon for this, so it cost me $20 for three vegetarian meals for two people, which would normally cost $59.

Overall, it was a fun experience getting to try random recipes.  We knew exactly what we were eating for three days, which was nice. 

At $20, this was a great value.  I am not sure how much of a great value it is at $59, other than the convenience of it.   At $59, it basically averages out to $10 a meal per person.  While that’s cheaper than eating out, we definitely can make meals on our own that cost less than that per person.

Like I said, this can be a great option for chronically ill people, depending on what your specific situation is.

The only thing you have to be careful of is that when you sign up, Hello Fresh automatically schedules your delivery for once-a-week.  You can change it to twice-a- month or you can deactivate your account.  But if you’re like me and you just wanted to try it once for fun, make sure you change the schedule – that is – unless you fall in love and want to receive a new box of food and recipes every week. 

Stitch Fix

Stitch Fix is a subscription service that sends you clothes.  You pay $20, which is applied to any items you buy – so if you order and don’t end up buying anything, you are out $20 – and you get five different items.  If you end up buying all of the items sent to you, you save 25%.  They provide a return package that you can use to send back any items that you don’t want.    

If you’re like me, and you are prone to getting stuck in clothes in the fitting room of stores because RA limits the range of motion in your arms, this takes that anxiety away. 

My first fix was a total bust.  None of the items fit right nor did I really like them.  Stitch Fix was nice enough to send me the next fix for free (they gave me a $20 credit), which was awesome.  Based on the things I really liked, and for the price, it made sense for me to purchase all of them the second time around.

They sent me a pair of skinny jeans.  I have been wanting a pair for a long time, but I hate jean shopping.  I won’t do it.  So even though the jeans were pricey, it was worth it to me because this is the only conceivable way I see getting jeans.  Plus, I’m petite, and lengthwise the jeans were perfect, which is saying a lot. 

I also got an amazing asymmetric sweater that can be either causal or fancy, and I have been wearing it everywhere.  It’s made of a really soft material and is heavy enough to wear as a spring jacket.  It also just looks really flattering. 

The clothes, even though I said I wanted the cheaper, the better, are pretty pricey.  But again, you are paying for the convenience of not having to go to the store, not having to potentially get stuck in an item you don’t want in a fitting room, and you can be upset in private if none of the items work for you.

I think the best advice is to provide a lot of feedback about what you are looking for.  You can put Stitch Fix into Pinterest and see what other people have gotten.  You can pin things and provide Stith Fix with the link, and they can send you items very similar to, or sometimes even the same as, the ones you pinned.  At the very least, they get a better idea of what styles you like.  Not to mention, there is an extensive profile that you fill out for them with your sizes and they provide groups of clothes that you can rate by what you like and don’t like. 

The other nice thing about Stitch Fix is that you can schedule them whenever you want and aren’t married to getting one every week or on a specific schedule.   

This is a great service.  I can’t say enough about it.  The quality of the clothes is high, the stylists really listen to you if you provide them with feedback, and you don’t have to leave your house to shop.  Dangerous, I know.  

If you’re interested, please use the following link –

https://www.stitchfix.com/referral/4484877 – as I get referral credit on my account.

***

I hope that this post has been helpful.  I know that many of us chronically ill people don’t have a lot of disposable income.  But subscription services may just be worth the extra money for the convenience of it all.    And I know that many chronically ill people look for ways to make life easier.   These services definitely do that.  Why do something that someone else can do for you?    

My RA Makeup Bag – Or How I Try And Look Good Even When I Don’t Feel Good

Every now and then I like to do somewhat of a more light-hearted or frivolous post that is still related to living with chronic illness.  Therefore, I have decided to share with you my makeup bag, and some RA-friendly products that I use.  

I have recently discovered that no matter how bad I feel, if I can do something to pep up my face a little bit, I end up feeling better.  Whether this actually works or is a placebo effect really does not matter.  But taking a small amount of time, literally two minutes, can make a huge difference.    

This is MAC's Miley Cyrus Viva Glam lipstick and lip gloss duo.

When this came out, I went online and ordered it without ever trying it on.  While it is bright, it seems to me to be almost universally flattering.  All you have to do is apply and go.  And because this is a little out there, you don't really need to do anything else to your face.  It is also pretty long-wearing, which is also a plus.

This is Benefit's Roller Lash mascara. 

On days when I do not feel in channeling Miley, at the very least, I like to throw on some mascara that adds volume and length, and opens up the eyes.,

This is BareMinerals Ready SPF 20 Foundation in fairly light.

In terms of foundation, for fancy occasions I use a liquid foundation that provides more coverage.  But on a daily basis, if I want to look a bit more put together, I use BareMinerals. 

BareMinerals is known for its loose powder foundation.  The powder stuff gets all over everything and drives me crazy, so I opt for the pressed powder kind which is much cleaner to use.

Remember, SPF is super important!  And I pretty much hate sunscreen, so I love products that have the SPF built right in.  One less step and one less mess.  

This is Drybar's Detox Dry Shampoo.

Dry shampoo is a great way to freshen up your hair without having to wash it.  I end up using it more often than I care to admit, but for those days when it is difficult to lift your arms above your head to wash your hair, this is a must!  

Oddly, I feel like I finally have more self-confidence and higher self-esteem than I did when I was not sick.  It is all about owning it and working with what you have.

Sorry guys that this post has turned super girly, but it is what it is. 

Something’s Gotta Give

Rarely do I cancel anything.  But lately, I’ve become overcommitted.  This is, of course, and as many of you might expect, not unusual for me.  It is a skill that has worked for me in the past.  And when I was healthy, it was fine.  But now, it’s really not the best way to be.

Even though I’m chronically ill, I do think that there are times when I am coasting purely on adrenaline.  But instead of crashing and taking it easy for a day, as was required by my healthy self, my chronically ill self requires several days, sometimes even a week or two to regroup and totally recover. 

It’s a hard balance because so many amazing opportunities have come my way over the last several months.  And it’s hard to say no to things that I really want to be a part of.  But the reality is, for my physical and emotional well-being, I can’t do everything. 

Recently, I had a phone meeting scheduled for a new project I am hoping to become a part of.  But something had to give.  And at the moment, that was the easiest thing to put on the back burner.  I couldn’t get out of my school or current work commitments, so I looked at everything on my plate, and took off of it the must un-pressing thing.  Fortuitously, the person I was meeting with also happens to be chronically ill and completely understood where I was coming from, which was really great, and made postponing the meeting, even though in my heart I didn’t want to, much easier. 

And it made me realize that I have become more attuned to listening to my body.  My head was telling me that I needed to slow down and take it easy.  So I took two days.  I had only intended to take one, but one wasn’t enough.  So I took some time for myself, reading non-school related, junky reading, and rested, which put me in a much better place.    

When I used to not listen to my body, I ignored the signs, and didn’t stop until a flare was raging and I had absolutely no choice but to stop.  Clearly, that wasn’t ideal.  But now, I am better able to preempt a flare when it is caused solely by stress.  When I feel myself getting too stressed, or I get that feeling where I am always coming down with something but never get sick, I know it’s time to take a step (or two or three) back.

Recently, Chronic Illness Coach Rosalind Joffe wrote a blog post entitled, “the more i do, the better i feel.  sound familiar?”

This is me in a nutshell.  Except the more I do, the better I feel is a hoax.  Like I said earlier, I might get an adrenaline rush from being active and doing a lot of things, but it’s a total rouse.  Because the minute I stop, my body shuts down.  It rebels against me, and then I am really at its mercy.   

It’s all about balance.  And when the balance starts to tip, well I really, really have to start to listening to my body and the signals it sends me. 

It’s good to listen before I send my body into a tailspin that leads to a flare. 

As we all know, stress exacerbates many chronic illnesses, and lupus and RA are no different.   

So how do you balance bouncing back and overdoing it?

Humira Pen Is Out; Humira Pre-Filled Syringe Is In

 That’s right folks.

After another botched Humira injection, I have decided to throw in the towel on using the pen. 

But since I feel like Humira is working well to control my RA, I e-mailed my rheumatologist to see if he could prescribe the pre-filled syringe instead.

Clearly, the information on the Internet regarding the pen is mixed.  Some people can’t stand the pain the pen causes.  If you’re like me, it’s the click that the pen makes that is so anxiety provoking.

And I think this is part of the problem.  After reading a lot on the Internet before deciding whether to go on Humira, it really freaked me out.  People were saying how awful the pen was, and it made me really scared. 

I think sometimes the Internet can be our worst enemy.  While having so much information at our fingertips is great, giving us the ability to hear from others that we might not otherwise, sometimes it can be TOO MUCH INFORMATION.

And I don’t want this post to contribute to anyone’s fear who might be reading this.  This is my experience ONLY.  It doesn’t mean your experience will be the same.  I just got very used to injecting using a regular syringe when I was on Methotrexate, and that’s clearly what I’m most comfortable with.

Like I’ve said before, in the grand scheme of things, this should not have been such a trying experience.  There certainly are worse things that I’ve experienced since I got sick.  However, the Humira pen experience has caused more tears and more anxiety than anything else in recent memory.

I didn’t want to wuss out, but at some point, when I’m four for seven (barely), I decided that I couldn’t do it anymore.  It’s just not working for me.

And the thing that really told me this is sort of messed up.  Even though the injection was botched, I was so relieved.  Despite missing a dose, I felt loads lighter that it was over.  And that shouldn’t be.

I understand those who say we should be willing to endure a certain amount of pain in order to gain ground on our health.  And while I agree with that – I was willing to deal with the pain of the Humira injection – I would have jumped at the opportunity to get a lobotomy over continuing to traumatize myself with these injections.  And that also shouldn’t be. 

I’ve been less anxious for a colonoscopy than I have been for my Humira injections, although I wasn’t actually giving myself the colonoscopy, so…

There’s a difference between someone else injecting you, and you injecting yourself.  This is why injections are typically given in a doctor’s office.  If I wanted to do this, I would have gone to medical school.

While it’s common knowledge that I have never wanted to inject myself, I moved past that fear.  And while I wanted to not be one of those people who had to go off of the pen because I couldn’t tolerate it, the pen has been a huge stumbling block for me. 

And injection after injection, it hasn’t gotten any easier.  In fact, my anxiety has only increased.  When I start having breakthrough pain a few days before, I am reminded of the impending event.  And then the day of, I am a ball of nerves.

The other thing I didn’t like was that the pen never felt the same way twice.  The Humira instructions are very adamant about rotating sites, so that may have been part of it.  Also, doing it every other week, as opposed to once a week with Methotrexate, I think it is harder to get used to. 

But this journey has been further complicated.  While my rheumatologist was very willing to make the switch, it was by no means instantaneous.  I e-mailed him Wednesday evening and he e-mailed me back quickly.  Then I called the pharmacy at the hospital on Thursday to make sure the prescription was ready before I made the trip, and the only thing they had received was a prescription for the pen.  I called my doctor’s office, and spent 15 minutes on the phone talking to a nurse. 

The staff at my rheumatologist’s office is very hit or miss.  Some people are great.  You talk to them and whatever you need gets taken care of right away.  Some people aren’t.  You have to call multiple times, tell them the same story over and over again, and still don’t always get results. 

This was my experience this time. 

I was passing by the hospital on Friday, so I went in at just before 2 p.m. to see if the prescription was ready.  They told me that nothing else had been submitted, since the incorrect prescription the day before.  So I went up to my doctor’s office to try and get things straightened out. 

As I was getting off the elevator to leave the hospital, the nurse who I had spoken to on Wednesday, who was supposed to call me back that day and didn’t, called me.  She asked if I had gotten my prescription.  I told her that no, I was at the hospital, but hadn’t been able to get it.

She told me to stay put and that she would call me back.  She never did.  I finally went back to the pharmacy.  One person tried to tell me that the pen is the only method of delivery for Humira.  I tried to calmly explain that the pen and syringe are different.  Then they told me the insurance rejected the prescription because it was too soon to fill.  I explained the situation, told them I wasn’t able to get my last dose, and that if they approved the syringes, this problem would never happen again.

I feel bad that the pharmacy had to fight with my insurance company, but honestly, better them than me.  I also feel that my rheumatologist’s office could have done a much better job of helping to me to secure the medication.  It doesn’t bode well for them if I’m off my meds.    

But at this point, that’s neither here nor there.    

I spent over four hours at the hospital.  The pharmacy closed at 6.  At 6, I was still standing there, waiting, and not knowing what was going to happen.  I didn’t know what I was going to do if they would have sent me home empty handed.  I might have refused to leave.  I’m pretty sure I would have blown a gasket. 

By this point, my nerves were so frayed that I couldn’t even think about doing the injection.

So I waited until Saturday, and I couldn’t do it.  I was just totally paralyzed by fear.  And I was totally freaking out.  Normally, my Humira shot is on Wednesday, so I was already four days behind, and starting not to feel good.

My parents and sister drove over an hour so that my mom could come and give me my injection.  I have to apologize to them and my boyfriend for causing them so much stress.  My anxiety just totally ran away from me, and I could not get it in check.  But I am a lucky girl to have such wonderful people in my life.

I want to emphasize, again, that this is only my experience and not indicative of others’.  However, if you are having problems using the pen, I would definitely talk to your doctor to see about switching to the pre-filled syringes.  I only wish that I would have been a better advocate for myself, and had tried to get the change completed sooner than I did.  I know myself well enough to know that things weren’t getting easier for me.

As I suggested in the post I submitted for the latest edition of Patients for a Moment, Humira has been my Achilles’ heel.  And I’m not ashamed to admit that.  In fact, I think we all have something that we just can’t handle when it comes to the chronic illness experience. 

Like my mom said, I’m not Hercules.  And she’s right.  We can’t all do everything, and that’s okay.  It’s frustrating to me that the Humira pen was so traumatic that I digressed in terms of being okay with needles, and being okay with injecting myself.  I was one hot mess on Saturday.  Rather than beat myself up, though, I am going to try and move forward, and hope that these injections get easier as time goes by.  I hope that because the syringe is more failsafe than the pen, I will get my confidence back, and this will no longer be the hellish ordeal that it has been for the last few months.    

When Good Knees Go Bad

As luck would have it, at a time when it seems that Humira is controlling my arthritis pretty well, I go and injure my left knee in kickboxing.

About a month ago, I remember my knee hurting more than usual after kickboxing.  While I have never really had significant arthritis problems in my knees, I told myself to wait and see if things improved after my Humira injection.

Things didn’t improve, but since I am so used to being in pain, I walked around with my knee slightly swollen, killing me walking up and down the stairs and while bending down.

I quickly realized that the pain I was having was very different from arthritis pain.  And that the pain was from an acute injury. 

I talked to my kickboxing instructor, and he suggested that I give things another week, but that if they didn’t improve, I should go to the doctor.

So that’s what I did.  And now I am going to physical therapy.  They think that there is a combination of things going on, but definitely an acute injury occurred.  The most likely cause is a misaligned kneecap, which has caused inflammation of the joint. 

In some ways, I guess there’s something to be said for being “athletic” enough to actually injure oneself by exercising.

On the other hand, there is a lot of frustration on my part that the situation is happening at all. 

So where does chronic illness fit in with this?  Well, it’s front and center, as you might imagine.

According to my physical therapist, the injury is being exacerbated by some bad habits I’ve picked up walking with arthritis. 

I think we unknowingly make a lot of accommodations in an attempt to reduce pain and increase mobility, but these changes can cause other problems, sometimes to previously unaffected areas.    

I am hoping that my knee gets back into shape, and that I will be able to continue kickboxing. 

For now, the prescription is icing my knee three times a day, wearing some support tape, and going to physical therapy once a week.

I suppose that things could be far worse than this, but it feels a bit like adding insult to injury, when you have an acute problem on top of being chronically ill. 

Like wasn’t one thing enough?

And I’m pretty sure that given my health issues, it will probably take longer for this to heal than it would for some people who don’t take as long to bounce back from things. 

As Independence Day approaches, it makes me think about personal independence and what we lose from illness.  I’m lucky in that I can do almost all things myself that I should be able to do.  However, given this injury, it’s not hard to see the slide that can occur. 

It’s also a hard lesson to learn that I should listen to my body, rather than attributing everything to the same old, same old.  Hopefully I didn’t cause myself further injury by ignoring it for several weeks. 

Hopefully this knee issue is a minor setback.

Lesson learned.