The Storm After Years Of Calm

What’s one of your worst fears?

One of my worst fears, for as long as I have been chronically ill, is seeing a new doctor who disagrees with my diagnoses.

That’s exactly what happened yesterday.

My old rheumatologist is leaving the state so I needed to find a new one.  I opted not to stay within the system my old rheum was in because he and I talked about it, and it wasn’t particularly convenient for me proximity-wise, and he had heard of the doctor that had previously been recommended to me by a family friend.  He felt that my illnesses are at a stable enough place where I didn’t need to stay within the same system if I didn’t want to.

I’ve been waiting several months for this appointment.  My hope was to get in while my old rheum was still practicing, but that didn’t happen.

So finally, the appointment was yesterday.  I went in feeling very prepared.  I had a notecard with my current medications and a notecard with my past medications.  I had a list of hospitalizations and procedures.  And I had a list of current issues that I wanted to make sure I touched on.    

I wasn’t prepared.  Not by a long shot.

This appointment felt eerily similar to my first appointment with my old rheum.

Questions being thrown at me rapid fire.  Asking me why I had listened to my previous doctors, all the while expecting that I am going to listen to everything this new doctor is telling me. 

It felt the same.  Almost.

Except that back nine years ago, I was on a quest for answers.  And now, this one appointment has seemingly refuted or called into question everything that, that appointment nine years ago sought to make clear.

That I thought was clear.  That I had accepted as given.  That I had accepted as my life.    

This appointment was 50,000 times worse because this doctor refuted the last nine years of my life.  Like it’s a lie.  Like it’s some kind of joke that I haplessly fell for.  Nine years. 

Nine years of experience can’t be wrong, can it? 

I know how I felt then.  I know how I feel now.  I know that I’ve been on a lot of medications that did not work.  And I know I am currently on a regimen that is keeping me feeling reasonably well. 

Basically this new doctor is saying that I may have lupus and RA, but I may not.  And that she is 100% sure – from NOT looking at my records, not having any current labs or x-rays – that I have fibromyalgia.  But as for the rest, it’s up in the air right now.

So if I don’t have lupus and RA, how does one explain why the medications I’m currently on have worked and have made me feel better?  Clearly it’s not just a placebo effect, that the very act of taking pills makes me feel better.  Because I’ve been on plenty of medications that have made me feel far worse.    

It’s not like being told you have cancer and then someone saying that, actually, you don’t.  That is probably the kind of news that most people in that situation would be glad to hear.

It’s not as if lupus and RA are small potatoes.  I would love not to have these illnesses, or any illnesses at all, for that matter.  But I do.  And I’ve been working within the confines of these diseases for nine years. 

Everything makes as much sense as it seems life ever makes with lupus and RA.

I know who I am with these illnesses.  I’ve accepted the life I will have because of these illnesses.  In many ways, I am who I am today because of these illnesses. 

Take that away, and who am I?  I don’t know.  The hurt and confusion that I’m experiencing right now is deep. 

It’s not like the things this doctor is saying click and make sense, and I’m finally seeing everything clearly for the first time in nine years.  In fact, for the first time in nine years, since I was diagnosed, I feel the way I felt before I had a diagnosis, before I had a name and diagnostic code to slap on myself.  I feel lost and scared.

I’ve felt lucky that I had labels to put on my diseases and that I had concrete evidence for having those diseases.  Is it possible that my lupus and RA are in clinical remission, but I’ve developed fibromyalgia secondary to that?  It wouldn’t surprise me, if, after spending so much time in pain, that my body misreads the pain signals and creates pain even when it’s not actually manifesting in my organs and joints. 

But to say that I don’t have lupus and RA at all and that I never actually did?  I truly don’t know what to say to that.  It’s incomprehensible.    

I’ve built the last nine years of my life around these illnesses, and for that to be taken away?  It’s unexplainable.  It’s devastating.

I’m not a science experiment.  You can’t just act as if what I’m telling you and what I’ve experienced doesn’t matter.  I know my body better than some doctor that I’ve never seen before and who literally knows nothing about my history. 

So maybe at our next encounter, maybe I will stand up and fight harder.  But I was so taken aback, so crushed, that all I could really do is sit there and shake my head.  Like is this really happening? 

I got beat down.  And I slowly have to get back up.  I’m trying to convince myself that no matter what, I belong in and to the autoimmune disease community and that all of the work and advocacy I have done over the last nine years matters.  And it breaks my heart to think that, that might not be the case.    

The worst part of the whole interaction was that there was no care or concern.  It wasn’t that this doctor seemed genuinely concerned about me being on medication that I don’t need to be on or that I had been treated unsuccessfully for two diseases for nine years and now it was time to find answers.  It seemed like she just wants to be right.

And I’m not convinced that she is.

And I have to wonder about her end game.  Does she want me to go off of my meds to see what happens and how I and my labs look without my current medications?  I don’t think I will be functional for a week without them.  I’m not sure I’d even be functional without them for more than a day.  

Maybe it’s too soon to be writing this post.  None of the labs or x-rays are back.  But I had to get it out.  I had to turn to the one place that I have documented everything since this journey began nine years ago. 

I think part of the most insulting thing is that when I was leaving, she handed me three brochures created by the Arthritis Foundation – one for lupus, one for RA, and one for fibromyalgia.  I will read them, cover to cover, only so that I can note down all of the symptoms that I have to prove a point.

But I don’t need them.  And I don’t deserve to be handed them as some consolation prize.  I’ve been doing this for nine years.  It’s insulting that that’s the impression she got of my knowledge of my own illnesses.    

But when your bedside manner paralyzes a patient and takes them back to where they were when they had no clue what lupus was and thought arthritis only happened to old people, that’s a problem.  When you take someone who is stalwart at advocating for others and cause them not to be able to advocate for themselves, that’s a problem.  And honestly, that’s on her, not me.  So let’s get one thing straight.  I am not that scared 22 year old that I was when I was diagnosed.  I’m a stronger, better person than I was then.  And I need to muster my strength because apparently, I’m literally and figuratively just getting started.  

(I had originally planned after the appointment to try my hand at vlogging, but that’s not happening because I would just be a hot, crying mess)

Chronic Illness Burnout: It’s Real And I’m Feeling It

I’d like to think that I take fairly good care of myself.  But moving from Michigan to New York, and from New York back to Michigan in two and a half years, and having to find a whole new cadre of doctors (twice!), has made me realize that I’ve been pretty delinquent.

I haven’t been to the eye doctor in about three years, and I’m supposed to go yearly because of the potential for retinal toxicity caused by quinacrine.  I haven’t had an annual gyno exam in almost two years, and I can’t remember the last time I had a legit physical. 

How did this happen?  And how does this constitute taking care of myself?  There are two reasons for why concentrating on my health has run amok. 

The first is that after five years of dealing with trying to get my illnesses under control, since I have had some control over the past few years, it all goes out the window.

My symptoms have evolved.  I experience a lot of fatigue, I have sores in my nose and mouth nearly constantly, my back is in constant pain, and I am battling severe dry eye.  I know that these are clear signs of some illness activity.  I know I should be dealing with them.  But I’m tired.

There’s only so much about myself that I can work on at any given time, and I guess given recent (and not so recent) events, my health hasn’t been at the top of my list.

I think that when your body is no longer constantly going haywire, it’s easy to become complacent.  It’s easy to pretend that you are healthy, or at least healthier than you’ve felt in a long time. 

This is really hard to admit.  Because my health should always be my top priority.  And recently, it just hasn’t been. 

The second is that my insurance situation has been somewhat sketchy and not continuous for the last few years, given school, having to find my own insurance because I was working a part-time job that did not offer benefits, navigating the marketplace, dealing with an insurance company going under, and then being unemployed.

I elected a PCP that my mom had seen years ago, and then when I called to make an appointment, I was told the doctor was not accepting any new patients.  I made an appointment with another doctor in the practice and called my insurance company to make that person my PCP.  Then, two hours before my appointment, they called and cancelled it.  Not only that, but they first told me the appointment was at 11:15 a.m., then 11:30 a.m., and when they called to cancel, they said it was 11:45 a.m.  It’s funny how as patients we are expected to cancel an appointment at least 24 hours in advance 0r risk having to pay for it, but doctors can cancel appointments just a few hours before with no penalty.  Needless to say, I decided that I wanted nothing to do with this particular office.  The demeanor of a doctor’s office staff can really make or break building a relationship with a doctor, even before you’ve even seen the doctor.

I then called a bunch of other doctors, none of which returned my calls.  Then I was looking at my grandmother’s doctor who was said not to be accepting new patients.  I decided to call anyway on the off chance that they were accepting new patients. 

I’ve also discovered that the system for my current insurance for picking a doctor is completely inaccurate.  They list doctors who aren’t accepting new patients as accepting new patients.  And doctors that are accepting new patients they have down as not accepting new patients.  So basically, this means that I have to call every office myself to make sure the information is accurate.   

Well, it ends up that my grandmother’s doctor is accepting new patients and I was able to get in to see him.  And he was amazing!  A new patient appointment consisted of sitting and talking with me about me medical history for almost forty-five minutes.  That was it.  He had me schedule a full physical for a later date.  But I was super impressed by how he just listened and asked questions.  He even brought up issues that I may face in pregnancy. 

He was impressed with how much of my medical history I knew off the top of my head, like being able to rattle off every medication I have ever been on to treat my lupus and RA.  I think it’s funny because I don’t know any other way to be.  I wouldn’t be on my game if I didn’t know these things. 

This experience reinforces for me why I am a patient advocate.  As stressful and frustrating as it has been for me to find a PCP within the constraints of my insurance and individual doctors’ offices rules and regulations, I imagine that many patients would simply give up.  But I can’t afford to give up.    

I’m making my health my top priority again. 

Now off to find a new rheumatologist…

Am I A Bad Patient Or Do I Have Bad Doctors?: When Is It Time To Dump Your Doc?

I’ve talked about my lack of attention to pain management, both with my doctors in Michigan and my doctors in New York.

Now I’m having other issues.  After my last rheumatologist appointment, which was in January, I was not told to make a follow-up appointment. 

And I’m not being required to get blood work done every three months like I was in Michigan. 

The last time my liver levels were checked was September, and at that time, only one, not both ALT and AST, was tested.

I’ve been having some itching attacks recently, which typically only happen when my liver levels are high. 

But I don’t want to go to the doctor.  The medication combination I am on now has been working fairly well for the most part, and I don’t really want to have to change it. 

Chronically low white blood cell count and extremely elevated liver levels have always been the downfall of almost every medication regimen I have ever been on.   

Plus, the way my current insurance works, I pay a $15 co-pay for office visits, but then I pay 20% of the total price of the visit and any lab work and other tests.  That adds up quickly, which means that I feel like going to the doctor only when it is absolutely necessary.    

And unfortunately, I don’t have the same rapport with my rheumatologist in New York that I did with mine in Michigan.  Despite his flaws and our issues when I first started seeing him, I really miss him, and would go back to him in a heartbeat if I move back to Michigan.

I’ve been told by several people to switch hospitals for rheumatology care.  However, I will be interning this summer at the hospital that people want me to switch to, and it doesn’t look like their rheumatology department even accepts my insurance.  

So I’m in a bind. 

For a lot of reasons.

How long should I be seeing a doctor for before I feel comfortable with them?  To be honest, I have ambivalent feelings about all of the my current doctors.  They seem like fine doctors, and I don’t expect five years of rapport that I had with my doctors in Michigan to translate into rapport with my new doctors in just a few months. 

But – if each visit is like a date – I’m waiting to get that feeling, and I’m just not.

And I know that my feelings about New York in general range from ambivalent to outright hatred.  But I really want to love my doctors.  Where my health is concerned is of utmost importance to me.  But right now I just don’t love my doctors. 

And I’m honestly not that sure how much they like me, either.         

So when do I walk away?  At what point will I know that it’s time to say goodbye and either find new doctors or get really ballsy and go it alone for a while?    

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…

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.