When Health Is The Focus Again

It’s been a while. Mainly because my health hasn’t been the center of everything. It’s so easy to write when things aren’t going well. It’s harder to write when they are.

In the last two years, I bought a house and got married. And of course, lupus and rheumatoid arthritis have been there and figured in. We bought a ranch because I didn’t want to be forced to navigate stairs if my health declines. A lot of what went in to planning our wedding was done with chronic illness in mind. But even so, those events were at the center.

Now, due to circumstances beyond my control, my health is front and center again. Several months ago, I found out that Quinacrine was no longer available – more about that in another post. As a result of this, my rheumatologist suggested that I go back on Plaquenil. I had been on it before, with my previous rheumatologist, with little success. I told my current doctor that, and he wasn’t convinced. Even when I told him that I had been taken off of it due to elevated liver enzymes, he told me that was incredibly rare with Plaquenil.

So I played the game. I started taking Plaquenil again, just to prove a point. And prove a point, I did. Pretty much every side effect that comes with Plaquenil, I had. I had headaches, extreme nausea, and severe itching. I switched to taking the medication at night instead of the morning and that helped with the headaches and nausea, but I continued to have extreme itching all over my body.    

When I told my doctor my symptoms, he told me that I must have an intolerance to Plaquenil and that I should stop taking it. He didn’t offer any other options. Well, other than telling me that I could make a killing if I could find a way to manufacture Quinacrine myself.

And with this situation, I feel like nothing has changed in the 12 years that I have been sick. Because of my “overlap syndrome” of lupus and RA, many treatments aren’t an option for me. Methotrexate didn’t work and caused elevated liver enzymes and low white blood cell count. Cellcept and Tacrolimus were no good either, for various reasons. Humira caused me to go into the worst lupus flare I’ve ever experienced and so that means that typical biologics for RA are basically off the table for me.

So for now, I’m on Imuran and that’s basically it, at least until I want to get pregnant. And then the jury is out because my rheumatologist and gynecologist disagree on whether I can remain on Imuran during pregnancy. More than likely, I’ll have to give it up, too.

And then where will I be? The ultimate test. How will I be on nothing at all? Will I be able to function?

It’s beyond frustrating.

And right now, I don’t feel great. My labs don’t look great. It all feels like a crapshoot. There are no clear answers or easy decisions. There’s just better or worse.

My old rheumatologist used to measure progress based on whether I was having more good days than bad days. For most of the time I saw him, I was having more bad days than good. But things got better. And I’ve maintained that. Going off of Quinacrine and back on Plaquenil changed things. Suddenly, I was having more bad days than good.

So for now, I wait. Wait for solutions and treatments that don’t exist, wait until the answers become clear to me.

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…

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? 

The Methotrexate Shortage And Me

I’m sure by now most of you have heard about the shortage of Methotrexate. 

If you haven’t, I’ll try and get you up to speed.  So, the main issue is with the preservative-free form of MTX that is used mainly to treat children who have Acute Lymphoblastic Leukemia. 

Puts a whole new spin on saving the children. 

The reason that this ends up affecting the whole pot of MTX – in other words all of the injectable forms – is because one of the major suppliers had some serious quality control issues that have severely diminished what was already a diminishing supply. 

I’ve read some accounts about this crisis that have been infuriating because they are uninformed, both from reporters and from people with RA, themselves. 

Some of these accounts suggest that the Methotrexate shortage won’t affect people with RA because most people take it orally.  In fact, I think that is dead wrong.  When I was on it orally, I was in the minority.  Most of the people that I knew that were taking it, were taking the injectable form.

The company that manufactures my MTX is discontinuing the size vial I currently get, 25 mL, and will instead be making 10 mL vials, thus cutting their supply literally in half.

A lot of people have asked me if I will be affected by the shortage, and my answer is now yes and no.

Yes, if I continue to be on MTX, the shortage will most certainly affect me.  This is really frustrating because I’ve finally got self-injection down, feel like I’ve found a treatment that works, and there may be a chance that I will have to switch meds. 

But I will NOT go back on the oral form.  At the time, since I didn’t have a point of comparison, I thought I tolerated oral MTX pretty well.  However, now that I am on the injectable kind, I realize how awful I felt while I was on the oral, especially the day I took it. 

But unfortunately for me, this matter has become more complicated.  I had my every-three-month blood work on Friday.  And I received a call from my rheumatologist’s office on Monday, informing me that my liver levels have increased yet again – from just a few weeks ago when I had labs drawn for something else, and my rheum claimed it was because I still had a high concentration of MTX in my body from Wednesday as opposed to Friday – so I am off of MTX for the next two weeks.  Then I need to have the labs re-drawn, and we’ll go from there. 

So I’m not sure if I will get to stay on MTX, which is frustrating since I feel like it is working pretty well, and I hate making med switches. 

I’m not sure if the silver lining is that if I have to go off of MTX, I won’t have to worry about how the shortage will affect me any more.  But   

Apparently, currently, there are hundreds of drugs that are at risk of running out.  It’s simply an issue of supply and demand.  But maybe if the government worked harder at finding cures for diseases instead of having to rely on medications that ravage our bodies, none of us would be in the position to worry about things like this.

We have enough to worry about.  Life with chronic illness is complicated.  We shouldn’t have to worry that there won’t be enough of the drugs we need to stay alive.  

Gone, But Not Forgotten

It has been a few weeks since my last post.  I’d like to say that things are good.  In some ways, they are. 

But there’s a “but” in there.  You knew it was coming, didn’t you?

Symptom-wise, I have been doing pretty well.  The Methotrexate injections seem to be working fairly well.  Given the cold weather, my pain has been pretty much in check. 

But for several months now, I’ve been having dizzy spells and headaches that I finally couldn’t ignore.  Now these are different than anything I’ve ever had before.  I tried to wait things out, hoping they would disappear, but no dice. 

So I went to my Primary Care Doctor.  She is very patient and kind, and very thorough.  It’s so hard to wind through the lupus-rheumatoid arthritis maze, trying to figure out if symptoms are a new manifestation of my disease or something else.  And she helps me decipher through it, which I appreciate.

There was nothing immediately glaring that could answer the question to why I am having these issues.  So she referred me to a neurologist, a neurologist that I won’t be able to get in to see until the end of March (but anyway…).

And she had some labs drawn.  And this is where the “but” comes in.

My thyroid, blood sugar, and hemoglobin were normal, so none of those explain the dizziness or headaches.

But my liver enzymes were elevated and my white blood cell count was low.  Both of these levels are worse than they were the last time they were checked.

Really?  Seriously?  Are you freaking kidding me with this stuff?

My Primary Care Doctor is sending me the results and told me I should probably contact my rheumatologist, because it could be a medication thing.

And I already know that is. 

So I’m just going to say it.

Fuck!

It’s the MTX. 

But I feel good.

So for now, since I’m finally skilled at MTX self-injection, I’m going to keep doing it. 

I feel good, dammit. 

What this new turn of events actually means, I have really no idea at this point.  I will e-mail my rheum once I get the actual results so I can provide him with some numbers. 

My liver enzymes have been chronically elevated for years now.  No one has been able to figure out why, really.  And the white count, well, I don’t feel sick, so…

Why does this always happen?  Why do we finally find a medication and administration form that works, only to find out that the medication is making me sick?  Healthier in some ways, sicker in others.

Honestly, I’m pissed off at illness right now.  There are other reasons, which I will leave for another post.  But why?  Why is this happening?   

I’m feeling pretty good these days, so why is it that the labs have to show otherwise?  Can’t things ever just be simple?    

Seems like I can’t quite ever catch a break.  And that’s really annoying.  I try to be a dutiful patient, but even when I am, it doesn’t get me very far.

Am I robbing Peter to pay Paul? 

If you go over to Health Central and check out my post on RA Meds And Pregnancy, which is by far the most depressing post I think I have ever written, I explore the issue of being on meds to stay healthy that may have other, not-even-considered negative effects.  

I guess in some ways, this is just the game we play.   We do the medication dance, and it takes a long time, sometimes too long, to find a regimen that works.  But what happens when you think you have one that works and find out that it’s doing other things it’s not supposed to do?  What then?  What now?

The Art Of Self-Injection

Saturday was shot day.  And I did it myself!

Over the past few weeks, I spent a lot of time online researching potential tools that would facilitate the injection process. 

As I puttered around, I was a bit frustrated to discover that Enbrel and Humira come in pre-loaded pens. 

Methotrexate is totally old school.  You get vial of medication.  I have to prep the syringe myself.  MTX is a DMARD, whereas the other two are biologics, so I’m not sure if that makes a difference.  Or if it’s just the fact that good old MTX is stuck in the old days.

Enbrel and Humira also come with very thorough instructions, and their websites also say several times that your doctor’s office should make sure you have self-injection down before you leave the office with a prescription.  My rheum’s office gave me a very brief crash course, in which my hand shook the whole time at having a needle and syringe in my hand for the first time ever.  How could I get self-injection down when I was so busy paying attention on how to prep the syringe and trying not to accidentally stick myself?   

For the first two, I sat there for almost two hours, getting an eighth of an inch from my skin.  But the thought of sticking the needle in made me nauseous, and by the end, I had sweated through my pajamas.  Ultimately, since I was home for 10 days for Thanksgiving, my mom gave me my first two injections, and threatened to be at my apartment every Saturday morning for the rest of my life to give me my shots. 

Sorry mom, I love you, but I went in another direction.  I found this cool gadget online.  It’s called a NeedleAid (http://www.needleaid.com/)*.  For me, I could tell that the part of self-injection that was weirding me out the most was actually seeing the needle go into me.    

Needle Aid is a product out of Canada that is made for people who are needle-phobic, but have to self-inject.  It is also made for visually impaired people and people who have unsteady hands.  Basically, the gist of it is that the needle is hidden away.  You push down on part of the device and the needle goes in – but you don’t see this happening.  Then you push down the syringe all the way, and then you are done.  The NeedleAid is spring-loaded so that once you’re done, you let go, and the needle is safely back up and out.  Basically, this device tries to mirror the actions of an injection pen.

So I put on Christina Aguilera’s “Beautiful”, I prepped my syringe, and loaded it into the NeedleAid contraption.  Ultimately, it took me about a half hour to prep and then get over myself and just do it.  And when I say a half hour, I mean about two minutes for the prep and do, and about 28 minutes of sitting there thinking about it.  Because with this contraption, once you push the needle down and in – which you can’t actually see happening, but feel – there’s no turning back.  Then you plunge the syringe and go.  I decided to put the coffee on and told myself I had to get it done so my coffee wouldn’t get cold.  Clearly coffee is a great motivator for me.

My one major hope was that when I released the syringe, that it was empty.  Please universe, that syringe better be empty.  Otherwise, I may have had to kill myself. 

I even had two nurses on standby in the event that I couldn’t do the injection myself so I wouldn’t chance missing a dose.

I wanted someone to idiot proof this experience for me.  Make it a bit easier on someone who really does not want to stick a needle in themselves.  But no dice.  So I had to make the experience easy for myself.  And that’s what I did.

I’m not gonna lie.  NeedleAid is definitely the best $20 I’ve ever spent.

Please don’t think I am being a drama queen here.  Before I got sick, I literally used to have a panic attack if I needed a shot or a tube of blood drawn.  But after four sticks and 27 tubes of blood during my first rheumatologist appointment, that fear quickly dissipated.

But the fear of sticking a needle into myself hasn’t.  And one of the chief reasons for that is the whole pneumovax debacle.  If a medical professional can administer a vaccine wrong and almost kill me, how can I trust myself?

I can only hope that as time goes on, I won’t need to contemplate, and my injection time will become only a few minutes.  But I’m already down from two hours to about 30 minutes, so that’s definitely an improvement.

I’m glad I am able to do it myself now because it would have been hard to always coordinate to have someone around on Saturday morning to do it for me.

Maybe one day I won’t be nauseous at the sight of me sticking a needle into myself, but for now I don’t need to worry, because I don’t have to see it.

And I’ll concede that there are definitely less side effects from the injection as compared to oral MTX. 

For me, conquering my fear of self-injecting is a really big deal.  It’s not something I wanted to do or thought I could do.  But, in the immortal words of Tim Gunn, I made it work.

And isn’t that what’s at the core of illness experience?  Making life as livable as possible despite the confines and limitations of our illnesses?  Like I’ve said before, the boundaries of what I can and am willing to do to be as healthy as possible, are forever fluid and changing.  If you would have told me a few weeks ago that I would be giving myself MTX injections once a week, I totally wouldn’t have believed you.  And I can only imagine that as I continually skirt the boundaries, someday, maybe even some time very soon, this will seem like a very minor state of affairs.

Stick a needle in me.  Oh wait, I already did that.

And maybe, just maybe, if you’re really lucky, I’ll vlog about it.

* I purchased the NeedleAid myself and am promoting it of my own free will.  I did not receive any type of compensation from the company.