Does This Chronic Illness Stuff Ever Stop Feeling New?

I’ve been at this for four years now.  But I don’t feel very practiced.  I feel kind of, well, not numb.  The opposite of numb?  Like I’m wading in quicksand?

To be honest, I don’t know how I feel right now.  But I wonder if this ever gets easier, ever gets less pressing.    

I’ve been wondering lately if I’ll ever get ahead of my illnesses, if someday, I won’t feel quite so much like a sick person.

But it also worries me.  What happens when I get used to this?  What happens when things no longer rock my world off its axis?  What happens when abnormal tests, abnormal blood work, abnormal everything, becomes the rule rather than the exception?  Am I there yet?  Am I already there?

Blood work has become old hat.  I’m no longer a novice at injecting myself.

I bruise easily physically.  But emotionally, too.  It’s exhausting to be on guard all the time.

But it seems like every time I start to relax, every time I start to feel like things are turning around, I’m dealt a new blow.

Because just when I get comfortable, something new and unexpected happens. 

I received an e-mail from my rheumatologist that my latest blood work showed increased levels of Creatinine.  My rheum has referred me to a nephrologist.  My rheum is not an alarmist, but I am concerned that he thinks whatever might be going on now is not within his purview. 

Another new member to add to my medical team.  Yay!  Not!

So, with the Humira, the RA seems to be managed right now, and now there could be kidney involvement due to lupus?  This just stinks.  I said the “F word” out loud when I read the e-mail.

I was like, you’ve got to be kidding me.  Can’t a girl ever catch a break?

So the newest thing is the Humira.  So far, I think my experience with Humira has been mixed.  I guess you could say that the scales are tipping more in the good direction, but that doesn’t mean that there hasn’t been a fair share of bad or annoying.

The good part is that, for the most part, I feel good.  Imagine me doing a little dance like Kristen Wiig does in the movie “Bridesmaids”, when the cop makes her walk the line to see if she is drunk. (See video clip below)

I’m doing a dance like that.  See, I feel great!  Look what I can do! 

But my head feels like it’s going to explode a lot of the time.  Humira continues to wreak havoc on my sinuses.  And, whether it is my seasonal allergies coming out to play earlier or part of the effects of Humira, I constantly have this congested, stuffy head, mixed with a watery nose and eyes.

How is it even possible to simultaneously be stuffed up and drippy?     

I wonder when you consider a drug no longer new.  I’ve been on Humira for almost two months now.  And I still feel very unsure about the whole thing. 

I’m on the pill, but since I started Humira, things have been weird, off, in that department.  And they shouldn’t be, since the pill usually spells consistency.  This concerns me a bit.  But I did find online that this can be a rare side-effect of Humira. 

And I’d go to the doctor, but…Oh, wait!  I don’t have a PCP right now because my amazing one retired and I’m too in denial to replace her.

And I’ve noticed that a few days before my next dose of Humira, I feel like I’m getting a fair amount of breakthrough pain.  I’m not sure if this is typical, or if my body still has to get used to it or what. 

Can you tell I’m a creature of habit?  I’m not too big into change. 

Dose number four of Humira is tomorrow.  I have an appointment scheduled with the nephrologist. 

And I guess I’m waiting for the punch line.  I’m waiting for this bad dream to end.

I’m sick.  I know I’m sick.  And I know it’s a forever thing.  But does it ever get easier?  Will I ever feel seasoned?  Like a pro?  Like the scales have officially tipped in my favor? 

On the other hand, do I want to feel seasoned at this?  Because once I do, illness has become the premier thing in my life.  And I don’t want it to.  But I don’t know.  Maybe it already has…

Sara Gorman's Pillbags

So, yet another product review.  Although this time, I purchased these items for myself, and am writing a post, not because I was asked to, but because I love them so, so much.

Sara Gorman, one of my blogger friends, and fellow person with lupus, after taking on the book world, with her book, Despite Lupus, has taken on the medication world, creating innovative and pretty cases for transporting medication.

These are so much pretty and more convenient than the plastic clunkers I’m used to carrying around.  And they are so unobtrusive.  In fact, I’d like to show them off because they are so pretty.

There are two types available.  One is the pillfold, which has eight pockets, one for each day of the week and an extra.  Each day has two sections, one for day and one for night.  It also has a little hook so you can hang it up.  The other is the pillpouch.  The pillpouch has six elastic bands that fit around standard-size prescription bottles, and features a drawstring closure.

I waited anxiously for these to be available, and ordered mine the day they became available.  As soon as they arrived, I was smitten.  I love the pattern (I got Bordeaux), although there are three other patterns currently available, and I love the pillbox hat logo on them.  They are very classy.

What a great way to be a stylish sick chick, don’t you think? 

And I love that the linings are pink! 

These will be indispensable for traveling.  They will be easy to find and pull out of my bag, if necessary, and they certainly take up less room than plastic bags and boxes filled with pills and bottles.      

Sara has really taken her illness experience and turned it into something pretty darn amazing.  I am grateful for her creativity. 

She is truly an inspiration.

And I have to wonder if the concept for the pillpouch that holds prescription bottles came from those toddler hats that her two young daughters might wear.  That’s what it reminds me of, anyway. 

Even better, 5% of the proceeds from every sale go to a lupus charity.

I think Sara and I should collaborate on some pretty, fancy case for taking syringes and injection pens with you.

For more information on Sara, visit http://www.despitelupus.blogspot.com/.

And for more information on her pillbags, visit http://www.pillfold.com/.

You Win Some, You Lose Some, In The Chronic Illness Game

If you read my previous posts as of late, you know that my transition off of Methotrexate and on to Humira has not been a smooth one.  I botched my last Humira injection, which was pretty traumatizing for me.

So as the two week mark approached, I have been filled with anxiety about my next injection.  Today was hard.  I decided that since I was alone last time, that my boyfriend be present this time, as he was the first time.

I had him hold the actual pen so that I wouldn’t, consciously or unconsciously, move it away while the injection was being given. 

The injection definitely burned again, but wasn’t as bad as last time.  But we got it done.  And when I say “we”, I mean “we”.  It was definitely a team effort.  My confidence and nerves were totally shot.  I felt like I couldn’t get a good grip on the skin to pinch it, and every time I went to push the button, I chickened out.  But I finally did it. 

It’s amazing to go from a teary, freaked out mess, to feeling so great once it was finally over with.  I have to keep reminding myself that this is a new thing for me.  This is only the third injection.  This whole pen deal definitely has more of a learning curve than I was expecting.  But I guess it was that way with the Methotrexate, too. 

Ask me in a few months, and hopefully this will be second nature to me then.      

Anyway, on to other things…

The headache situation hasn’t changed.  I had a bad one last week.  My BF was amazing, though.  And I was able to recover in a few hours, which was a surprise to me.  However, since I’ve been off the MTX, it confirmed for me that these headaches are definitely still a problem, and need to be dealt with.

And I finally got someone to take notice about my headache situation.  I explained to my rheum that I had been referred to the neurologist that has clinic at student health, and that he was totally unhelpful.  I explained how I used to get headaches, but not like the ones I am getting now.  I told my rheum that they get worse when I move my neck.    

He immediately perked up at this.  He said he is concerned that I could have arthritis and inflammation in my neck and cervical spine.  So he sent me for x-rays.  He said that an MRI might be considered, but he doesn’t want to expose me to that amount of radiation if he doesn’t have to.

But guess I said all the right things, the buzz words, this time, to make my rheum take notice.  I am relieved that this is actually being looked into.  Finally.

So I was able to get those x-rays done today, while I was at the hospital.  So hopefully we will have results soon, and I hope beyond hope that I am proven right.  Not that I want to have arthritis in my neck, but that there is some concrete explanation for these headaches that I am having, for the pounding pain on one side of my head or at the base of my skull, and for the considerable worsening of them when I move my neck. 

And finally…

I am now doctor shopping for a new PCP.  I got a letter in the mail last week that mine is retiring.  This is a nightmare for me, as I’m sure many of you can imagine.  It’s hard to find a PCP who is willing to take on a complicated patient like me.  Plus, she is also my gynecologist.  So I am not looking forward to trying to find a new PCP, especially one who specializes in women’s medicine, and is willing to deal with a 26-year-old with multiple chronic illnesses. 

Bah!  Ugh!  A nightmare, indeed.

So for now, I’m celebrating the victories I had today with my rheum and Humira.  And now I have to figure out what to do about my PCP, since my insurance requires a referral from my PCP for all specialists I see. 

I wish this post was a little more sewn together, but I’m not feeling all that together at the moment.  I’m just trying to plug along, and reminding myself that in the chronic illness game, you win some and you lose some.

I lost with the MTX, but hopefully I’ll win with the Humira.  I won on the headache front because I finally got my rheum to take notice.  I lost on the PCP front, but hopefully I will find someone who was as good as she was. 

And of course, I’m winning on the boyfriend front because he’s awesome, and present to me in ways that no one else has been before. 

All and all, I guess as of right now, the odds are in my favor.  And I don’t feel like I’ve been able to say that in a long time.

Stopain Review*

In previous post, I reviewed a bunch of pain relieving creams, gels, etc.  If you are interested in hearing more about all of those, please read the following post.

Today I am talking about Stopain.

This is long overdue, and I apologize to the Stopain people for it taking me such a long time to post this. 

According to their website, “Stopain, [is] the #1 selling spray and roll-on in the topical analgesics category. Recommended by doctors and pharmacists for its immediate and long-lasting pain relief, Stopain provides temporary relief for minor muscle/back and joint pains.”   

Although Stopain has been around since 1991, many people have never heard of the product.  I hadn’t until I was contacted by a representative of the company. 

The goal of Stopain, is, well, to stop pain!  And that’s what it does.

Stopain is a little less offensive smelling than Biofreeze or the CVS equivalent.  It still has a menthol scent, though, which I know can be off-putting to some.  I don’t have too much of a problem with it, as long as the product works.

It comes in gel, roll-on, and spray varieties.  I tried the spray one.  I have a feeling that maybe the other ones might be a bit more effective because there might be more direct contact, but at least the spray version keeps your hands clean. 

When I was in Chicago, off of Methotrexate and not yet on Humira, Stopain was a lifesaver.  And it has been helpful more recently in helping with the breakthrough pain I’ve been experiencing after my botched Humira injection.    

If you have tried other topical pain relievers, whether you’ve found relief, or not, you should definitely try Stopain.  But make sure to consult with your doctor before using to make sure that there are no contraindications that you should not use this type of product.

Stopain is a sponsor of the Arthritis Foundation, and some of the proceeds from the sale of Stopain products will be donated to the Arthritis Foundation.  Now that’s something that I can get behind.  How about you? 

You can “like” Stopain on Facebook (https://www.facebook.com/Stopain) and Twitter (http://www.twitter.com/stopain), and have a chance to be entered into a sweepstakes. 

For more information, visit http://www.stopain.com.

* I received a free 4 oz. bottle of the Stopain spray version from Troy Healthcare, LLC.  However, the review presented here is solely based on my opinion of, and experience with, the product.

Every Now And Then I Fall Apart

This isn’t the post I had intended to write.  How many times have I said that before?

Originally, I was going to write about the side effects of Humira.  But they don’t seem so bad anymore.  But I’ll tell you about that, anyway, and then I’ll tell you about the really bad part.

I really wanted to title this post “the attack of the black snot,” but I figured no one would read it with a title like that.

So two days after starting Humira, the injection wasn’t so bad, and I felt like I had more energy. 

My nasal passages were feeling a bit constricted, but seemed like a small price to pay.

Then I blew my nose…

As I looked at the tissue, I realized it was dirty and wondered what could have possibly gotten on a tissue that I had just pulled out of the box. 

Then I blew my nose some more…

And I realized that the Kleenex was not dirty.  It’s what was coming out of my nose!  And this was not dried blood.  This was black mucus.

It was like a magician’s trick, when he hands you a clean towel and suddenly your dirty fingerprints appear all over it.

After the back and forth with getting on Humira, I decided to avoid having to bother my rheum.  So I called the 24-7 Humira nurse line.

The woman I spoke to was very nice.  But when I explained to her what I was experiencing, she gave me the answer that no patient, in uncharted territory, ever wants to hear. 

She told me that she had never heard of this before.  And that since it was something I had not experienced before – oh yeah, black snot, happens all the time – she suggested I contact my rheum.   

My first concern is that my brain is eroding inside my head.  My second concern is that I may not be able to stay on Humira, and I really don’t want to experience again having to go off of a drug that makes me feel better, because it is doing bad things on the side.

But this has not been the worst of it.

Wednesday was my second dose of Humira.  I used my right leg, which I never have injected into before.  But I figured it wouldn’t be much different than the first injection.  I clicked the button and immediately my whole leg was burning.  And before I knew what was even happening, Humira was running down my leg.  I figure I got at least half the dose in me.

But I don’t fully understand what happened.  All I can say is that I panicked and freaked out.  I wasn’t expecting it to feel the way it did, and I guess I was unconsciously trying to rid myself of the pain.

Then I cried, for close to an hour.  I was so frustrated and upset with myself. 

Lately, where my rheum’s office is concerned, I am dealing with idiots.  The last two months have meant more legwork on my part, having to follow up after mistakes and errors.  And now I feel like I am an idiot, too.

How could I have done something so stupid?

My boyfriend came over about an hour after the injection mistake, and found me curled up in bed, crying.  He consoled me, and then took me out for the night.   

(And props to the boyfriend for being so amazing.  He’s present for me in a way that no other guy has been before.   And this was the first time he saw me cry.  I’m not a pretty crier.  But he was awesome.)

I don’t know why I got so emotional about it.  I really don’t.  I messed up.  And it happens.  We all make mistakes.  But when messing up involves my health, it’s not easy to brush off.  I feel like I’ve failed myself, my doctor, my boyfriend, and my parents.

In the grand scheme, one botched Humira injection is minor.  But right now, it feels major. 

I guess it all got me into the thought process of if I wasn’t sick, I wouldn’t be giving myself a shot.  And if I didn’t have to be doing this, there wouldn’t be anything to mess up in the first place.

And the thing that gets me is that if someone, like a nurse, was giving me the injection, it would have been okay.  It’s not that I couldn’t handle the pain, it’s just that my reflexes took over and did the natural thing – removed the thing that was causing pain.

Maybe I didn’t pinch the skin tight enough.  Maybe I hit a vein.  Maybe.  Maybe.  Maybe.  I can’t explain why this injection felt so drastically different than the first one.  Maybe the first time I was prepared for the pain that didn’t even end up happening.  And this time I wasn’t expecting there to be pain.

I’ve decided if the next dose goes fine in my other leg, than I’m just going to keep using my left leg and not use my right.  

I got the Humira starter kit.  But there was nothing in there I could find on what to do if you screw up a dose.  I can’t imagine I’m the only one who this has happened to.  I suppose I could have called the nurse line again, to see what they recommend, in my case.  But since we can’t know for sure how much really got in and how much didn’t, I don’t think it really matters.

 

Do our doctors realize how stressful all of this is?  Do they realize how much the physical is tied into the emotional, and vice versa?  I don’t want to live my life in two week increments, biding my time between Humira injections.  I don’t to live in fear that I don’t feel like I can adequately deal with the situation.  I want to be the master of my own health situation.  I don’t want to feel that I am reliant on others who don’t have as much of a stake in this as I do, like many of the staff members at my rheum’s office.

(In the most recent case, my prescription was called in to the wrong pharmacy.  I was finally able to talk to someone who knew what they were doing, and it got called in to the correct place.  But it is a compounded medication that they have to make up and then mail me.  It’s Friday and I only have enough of the medication through Tuesday.  Thankfully my pharmacy is at least on the ball now that they have the prescription.)      

But I have to move on from this.  I have to be able to gear myself up for my next dose in two weeks.  I need to not psych myself out by thinking that this one mistake defines the rest of my relationship with this medication.  And ultimately, I need to settle the score.  Because right now, Humira has one up on me.  And that’s unacceptable.