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. 

Humor Me, Humira!

As I said in my last post, the time between getting off of Methotrexate and on to Humira took several weeks longer than I expected it to. 

I got the TB test done, and didn’t hear from my doctor that the results were negative until a week later when I e-mailed him.

Then came the adventure of trying to procure Humira… 

My doctor submitted the prescription to CVS.  When I went to CVS to pick it up, they told me that my insurance refused to fill the prescription at a commercial pharmacy and that it had to be submitted to a specialty pharmacy. 

So I e-mailed my doctor and called his office, saying that CVS had rejected it, and I had a number where they needed to submit it, but didn’t know what the pharmacy was or  where it was located.

This was Tuesday morning.  I got a call back on Tuesday evening, saying that the prescription was submitted to the specialty pharmacy.

As luck (I guess you can call it that) had it, I was going out to the place where the pharmacy is yesterday.  I don’t drive, and it is almost a 40 minute bus ride.

I got to the place Wednesday morning, and immediately went to the pharmacy.  They told me they had no prescription on file for me.  Frantically, I called my doctor’s office, and happened to get the person who had left me a message that the prescription had been submitted.  I explained the situation, and she said that actually, my doctor needed to review the prescription, and hadn’t got around to it yet.

She said she would try and make sure that it got taken care of so that I could pick up the prescription when I was done with my other appointment, and not have to make another trip back.

Thankfully, when I went back to the pharmacy, they had received the prescription.  Then they had to call my doctor’s office because they read the prescription as twice a week rather than every two weeks.  That would have been really bad!

Not feeling well, and being totally exhausted, were not a good combination, and I feared that one more obstacle in my way might send me over the edge, and that I would stop being nice and agreeable, and demand action. 

Nobody ever said that this journey was going to be easy or convenient. 

But finally, I had Humira.  I felt like I had some prized goods in my possession. 

And considering how much it costs – over $1,700 a month (of which my insurance covers nearly all, as long as I get it filled at a specific specialty pharmacy) – I guess I do.  I feel like I have to guard it with my life.

Getting here was a much longer road than I ever expected. 

I guess I knew that one day, I might have to consider the more aggressive treatments for RA.  And here I am.  I think that less than 24 hours after my first injection, it is too soon to tell the efficacy, but thankfully, I certainly don’t feel any worse. 

The good news is that, to me, the shot was very tolerable.  It wasn’t the most comfortable thing in the world, but it wasn’t the fire and brimstone that I made it out to be.  I did not go nuclear on my thigh.  I was very nervous, especially since so many of the stories online sounded awful.  But I’m not judging.  I believe that people feel what they feel.  But it makes me realize that I shouldn’t pour over the Internet for these things, because it only sought to scare me.

And my boyfriend was with me.   I’m not sure which one of us was more nervous, but he was a real trouper, getting knee deep in my health stuff so early on in our relationship.

I am extremely grateful.

And I was glad that my reaction was one of, oh, I worried for nothing, that wasn’t so bad; instead of, wow, it was worse than people made it out to be.

I will say that I find it ironic that you have to be rather dexterous to pinch the skin with one hand and push the button to inject with the other, since most of us with RA struggle with dexterity.  But I do think, that since you have to alternate sites, it seems to me like it will be easier to go from thigh to thigh than it is with a traditional syringe.

I am glad that when I see my rheum in a little less than a month, I will be able to say that I have had several doses of Humira.  I was worried that I would have to go, tail between my legs, saying that I just couldn’t handle doing the injection.

But as experience has taught me, I would rather deal with 30 seconds of pain than the unending pain that lupus and RA have caused me over the last few years.  You can’t really put a price on feeling well and being functional, which I have not felt since I stopped taking MTX.

And once again, I am grateful to the chronic illness blogging community that has rallied around me during this time of stress and uncertainty as far as my health is concerned. 

Who Stole My Spoons?

I’m feeling pretty dejected these days.  I was hoping that the MTX-Humira transition would be faster and more seamless than it has been.

In my head, I know that these things always take longer, but in my heart, I want to get back to feeling good as soon as possible.

And right now, I’m not feeling that great.  I feel like I am operating at a deficit.  The minute I wake up, I’m already two steps behind, and all I want to do is go back to bed. 

I went to a formal with my boyfriend. (Yes, that’s right.  There is a new man in my life.  But more about that another time…)

I had one drink – what the hell since I’m not on MTX anymore – and the next day, I felt like I might need a week to recover.  It wasn’t a crazy time.  We stayed at the party for about three hours.  We danced and we schmoozed.  Typical 20-something night. Probably even a tame 20-something night by most accounts.

And yet, I feel like I ran a marathon.  It’s like when 40- and 50-somethings act like they are 20 years old, and then regret it because  they can’t party like they used to.

That’s how I feel, but I’m not really sure I ever really got the chance to party in the first place.

And that makes me sad.      

Nearly a week ago, I had TB test.  This is required before they will let you start Humira.  Well, I was told to have it done on a Thursday.  But when I went to the lab, they said that wouldn’t be possible because it (the skin test) would need to be read, and couldn’t be done over the weekend.  So I waited until last Monday, and went to get it done.  The lab told me that they don’t do skin tests, but they looked, and my doctor had ordered a TB blood test (which I didn’t even know existed).

So here I am, nearly a week later, still waiting for the results, to find out whether we can move forward with the Humira or not.  They won’t fill the prescription until they get the test results (which they should have gotten in about 24 hours).  So I’ll be putting a call into my doctor’s office tomorrow, to see what’s going on.   

And I’m exhausted.  Completely.  Utterly.  I’m exhausted because of the run around that you get, when you get five different answers from five different people, and I’m exhausted because lupus and RA have settled back into the scene.

And I’m frustrated that I can’t be the girlfriend I want to be to my boyfriend. 

But oh, the fatigue.  I did not miss you one bit.  And how  you are throwing me for a loop, the longer you linger with me.

I had forgotten about the whole fatigue thing. 

I want to feel good.  I want to feel like myself again.  And I don’t right now.  My head is heavy and my brain is cloudy.  And I feel like I could sleep for 100 hours and it still wouldn’t be enough.

I don’t like this non-medication slide.  And I wish my doctor would understand this and move  a bit more quickly.  I have to rely on him because I am moving pretty slowly these days. 

I didn’t partake in the month’s Patients For A Moment because I have to admit, I’m feeling pretty much like all I am is illness right now.

I feel like this post isn’t even that coherent, and I’m not sure how I am going to write a coherent dissertation if I am feeling this way. 

I don’t feel good.  And I desperately want to feel good.

Oh how I wish I could have stayed on MTX. 

But since I can’t, I can only hope I can get on Humira as soon as possible, and that it works.

I want to be functional again.  Maybe I won’t be fully functional, but at least I’ll be mostly functional…

Bring Out The Big Guns: Humira, Here I Come

When it comes to health stuff, there is never a good time for things to go wrong.

After my latest round of blood work, my liver enzymes are back up, and my white blood cell count is down, again, so my rheumatologist is recommending I stop taking Methotrexate for good, and try Humira.

(At least I don’t have to worry about the MTX shortage anymore…)

Medication changes make me really nervous, and knowing that it will take several months to kick in, I worry about the period of not feeling good that is likely to ensue.  I kind of thought things were getting to a more stable place, but I guess not. 

It’s a bummer because MTX worked so well in helping my arthritis symptoms, but ultimately, the things it was doing in the background were not so good.

And I guess we’ve done this dance with MTX long enough.  It was the same when I was on the oral form; off, on, up, down.  The injectable form definitely had less noticeable side effects, but seemed to not work for my overall health.  

So my rheum told me to do some homework on Humira, and let him know if/when I want to start it.  Right now, I can’t be on nothing, because I won’t be able to function at a very high level.  And I guess I have to be willing to try everything once.  I can’t rule it out until I’ve tried it, although many of the things I’ve read about Humira are just downright scary. 

Humira is a biologic, unlike MTX, which is a DMARD (Disease Modifying Anti-Rheumatic Drug).  Biologics actually change your DNA.  That’s pretty scary, right? 

And people say the injection hurts like all get out. 

I feel like I had just gotten used to the MTX injections.  I had figured out a way to do the shots myself, I had come to terms with this once weekly routine, and I had made peace with the fact that this ritual was helping, rather than hurting, me.

And now I start at the beginning again.  With a new medication, and all that comes with it.

While I’ve heard about these medications from TV commercials, and patient bloggers who are on them, I haven’t paid that close attention to them.  I was hoping that things wouldn’t have to get to this point, to be honest.  But clearly MTX is neither a temporary nor permanent solution for me.

And I think we’ve followed the natural progression of things.  First I was only on Prednisone, and then we added in Plaquenil.  Then we tried CellCept.  Then we got rid of CellCept, and tried oral MTX.  Then we got rid of Plaquenil and added Quinacrine.  And we moved from oral MTX to injectable MTX.  And I was hoping that the Flexeril-MTX-Prednisone as needed-Quinacrine regimen would work.

But no such luck.  So here I am, finding myself at the door to the biologics, which are really my only hope at this point.

I hate to be in a situation where I feel like meds are my only hope.  I wish it weren’t that way.  I wish I didn’t have to say that in order to be functional, I need the meds. 

And I wish that these decisions were easier.  I have gone back and forth about this, and I’m still thinking that I might chicken out.  But what will that do?  Only prolong the agony? 

I need to find a medication regimen that works, and that doesn’t try to kill me in the process…      

I hate this game, but I have to be strong, put up a fight, and win.

Patients Rights Are Human Rights

One of the most trying occurrences during my recent health crisis has been the attitudes and behaviors of some of the medical professionals I have encountered.  While technically, this is nothing new, the degree and frequency with which it has been occurring lately has been incredibly frustrating. 

I went to the student health center for a rogue yeast infection.  It was hard for me to tell what it was at the time because it had gotten so bad, with no obvious sign of improving.  I usually avoid walk-in at the student health center, but in this case, I didn’t feel that I really had the option of waiting to get an appointment.

I have never felt so unfairly judged in my entire life.  I was told that the doctor hadn’t bothered to look at my chart because it was “too thick.”  Then I was refused oral antibiotics because it was deemed that I’m “on too many oral medications already.”  This meant, as many of you with immune system problems know, that I suffered with something for an additional two weeks, when, had I been given oral antibiotics, probably would have markedly improved in about two days.

The reason I didn’t say anything at the time is because I was totally in shock by the treatment (or lack thereof) that I received.  And I was deeply hurt.  I filed a complaint with the student health center, but I guarantee nothing will be done.   

And if I had a dollar for every time a phlebotomist asks if I can bend my elbow any straighter, I’d be so f***ing rich.  I’m so sick of it.  I have arthritis, so no, I can’t bend my elbow any straighter when getting blood drawn.

I tried to see if some note could be added with my information, so that this is something that lab techs will know ahead of time.  But I was told that there’s really no way for them to do that.   

And my veins.  Everyone has a complaint about my veins.

And when my rheum’s office called to tell me I could go back on MTX, the nurse who called left me a message, with my new dose: the oral dose and not the injectable dose.  She left me a message, and I was told to call and let her know I understood her instructions.  And I confirmed what the injectable dose should be.  And the response from her was, “Sorry.  I guess I should have looked at your chart.”

Here in lies the problem.  I have a chart for a reason.  I know it’s four inches thick.  I’m well aware.  And I might just hit the next medical person who sasses me about it over the head with it. 

Ultimately, I don’t feel bad for these people.  I’m sorry if through things I can’t control, your job is made more difficult.  But I don’t feel bad for you.  You’re not the one going through all these things.  I am.  And it is made all the more difficult by me being treated like a leper.  An enigma.  A pariah.  A drain on the system.  A complicated patient. 

It’s my chart, my arms, my veins, my everything.  And when I’m nothing but nice to you, is it so much to ask to be treated with the dignity, respect, and kindness I deserve?  Not just as a patient, but as a human being.

Isn’t it my right as a patient to be treated like a human being?

It’s amazing how quickly you can go from being a human being to being a patient.  And while the treatment should be the same regardless, it’s clearly not. 

There just isn’t room in the system for people like me, people under 40 years old who have significant health problems.  Nobody wants to deal with us.  So they treat us like shit. 

I don’t want the ER to be the first line of defense, but student health is exasperating, to say the least, and my specialists at the hospital are all totally overloaded.

And the bottom line is that doctors, when they need medical attention, aren’t treated this way.  I’ve watched many a time, waiting for my own appointments, where the red carpet is basically rolled out for doctors.   

It’s good to know that there is a Patient’s Bill of Rights.  But it focuses mainly on insurance issues.  It goes nowhere toward addressing the issues of climate that exist for patients in the medical setting. 

Maybe I’ve spent too much time in the medical arena in the last few years, and more specifically, in the last few months, but it doesn’t look like that is going to change any time soon. 

So what do you do when no one will listen to you?  You can fight for yourself to an inch of your life, and get nowhere.  But I don’t want to fight.  I just want to live.

 

Losing Ground, But Gaining Strength

The last two months have been chaotic, to say the least.  I’ve had a doctor’s appointment, blood draw, or other procedure every week for the last two months.  It has been physically and emotionally draining. 

That’s why I haven’t been blogging lately.  I didn’t want to write about it until some of these things were resolved.

I was at a point where I felt like my rheum and I had finally gotten ahead of things, that I was on a medication regimen that was working, and that I was finally over the hump of disease overtaking my life.

And now we’re back to the way life used to be.

It started with routine blood work that showed abnormal liver levels, followed by more routine blood work that showed even higher liver levels.  So I was taken off of MTX for two weeks, and then had my labs redrawn.  The levels finally returned to normal.  So I am back on MTX by injection, but a lower dose.  And I have to get my labs rechecked next week.  Hopefully the labs will stay normal.  If not, I might have to get off MTX for good.

And as I discovered over the few weeks I was off MTX, it was murder.  My body lapsed back into a state that I hadn’t experienced in a while.

Kickboxing was totally out for me.  When I went home to visit my family, I could barely get into my mom’s Honda CRV.    

I didn’t miss the hip pain, the feeling of bone against bone, the fatigue, the random bouts of nausea. 

And then there was my yearly gyno exam.  The reason that I am so religious about getting it done is because it is normally the one thing that checks out fine.  But not this time.  I received a call from my gyno’s office telling me my pap smear came back abnormal. 

Have you heard the one where they squirt vinegar on your cervix? 

It’s called a colposcopy, and it sucks!

To be honest, pain is relative.  Had I not been through a lot of the things that I have over the past few years, I may have thought it was the worst thing ever.  The colposcopy was more emotionally trying than physically, although it was by no means easy physically.  They took two biopsies of my cervix.  And they couldn’t get one of the biopsy sites to stop bleeding.  Then there was the recovery from it, which is scary, when you’re in uncharted territory.

Thankfully, after a stressful week of waiting for results, I have been diagnosed with cervical polyps.  I will be meeting with my primary care doctor next week to get some further information.  But from what it sounds like, I will have to repeat the pap and colposcopy in six months. 

Over the last few weeks, I have felt like I’m drowning.

I no longer feel two steps or even one step ahead.  I feel a thousand feet behind.    

I recently saw the movie, “Extreme Loud and Incredibly Close” (great movie but probably one of the saddest I’ve ever seen), and I feel like Oskar, when he’s stream-of- consciousness freaking out about all the potential dangers that exist in the world.

Was the yeast infection from hell a month ago to blame for my abnormal pap results?  Was that misdiagnosed?  How can I have an abnormal pap when I feel like all I do is go to doctors?  After all the blood work, how can I have anything wrong with me that hasn’t already been figured out?

Enough already! 

I feel like there’s not much more I can handle.

How much of myself am I going to have to give away in the name of health?  I’ve had my colon biopsied (twice!) and my cervix biopsied.   I’ve had blood taken out and medicine injected in. 

Now realizing what a reprieve I had for a few months, I want that reprieve back.  Things were basically stable.  I wasn’t in horrible pain all the time, my overall symptoms were less pronounced, my mobility was relatively good, and I wasn’t being attacked by opportunistic infections and abnormal lab results.  That was nice.  While it lasted.  I want that back.  I need that back. 

I almost felt…dare I say…normal. 

But now I feel the total opposite of that.  

And there’s not an immediate reprieve.  I have to have labs redrawn in a week and a half to make sure my liver levels haven’t gone up again.  I also have an appointment in about 10 days with a neurologist, to see if the headaches and dizzy spells I’ve been having are lupus/RA-related or the result of something else.

I’d like to say: Don’t get Lupus.  Don’t get Rheumatoid Arthritis.  Don’t have an abnormal pap smear.  But these are things that we can’t really control.

 I know there are many out there in the “no meds camp.”  However, right now, my diseases are controlled with meds – well – with the right ones, when I’m on them.  Do I hope one day I may not need the meds to feel disease free?  Absolutely.  But right now, I do.  And for the first time, giving myself MTX injections makes me feel in control.  I finally view my once-weekly injection as a key to promoting and furthering my health.

Being off of it for two weeks, and seeing the decline into feeling unwell, I was so desperate.  I’ve never wanted to give myself a shot more.

The last few months have been really trying, physically and emotionally.  I feel like I’ve lost some ground.  But I feel like I’ve gained strength.  I’ve been under a lot of stress, though.  And I wish I could find a relaxed state.  I wish I could achieve internal homeostasis.  I need balance. 

Because while I might not be able to control my illnesses, I can control my attitude.  Right now, I am feeling grateful that things aren’t worse than they are.  But I really do need a break.  There’s always something, and I am getting pretty sick of it.  I am trying to stay positive.  What doesn't kill us makes us stronger, right?