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)

Is It More Lupus Than RA Or More RA Than Lupus?

When I began seeing my new rheumatologist, I was worried that she might disagree with my diagnoses. And that’s a very scary prospect. I feel like I’m finally at the point where I’ve made peace with my diagnoses. They are a part of my life and a part of who I am, and I have, for the most part, accepted that. So it was scary to imagine what would happen if I was suddenly told that I have something other than what I think I do.

It’s not that I don’t trust my last rheumatologist, I think it’s just a risk you take whenever you start seeing a new doctor, and this is my first time doing it since I got sick.

And that didn’t happen…exactly…

So when my new doctor told me that she feels my primary disease is lupus, with secondary RA, I felt a little jilted. This is not how I have viewed my diagnosis. I have tried to view my illnesses as equal, although like I said before, I have steered a bit more toward the RA community.

But why is that? It’s not as if I can measure and quantify the impact of each illness on my body, although I can categorize the symptoms (sometimes).

And I absolutely hate the phrase “mixed connective tissue disease” or “undifferentiated connective tissue disease”. I’ve always felt that these phrases are a copout for actually providing a definitive diagnosis.

Is this a game changer? No. Not really.

In some ways, these are facts that I’ve always known. I have lupus AND rheumatoid arthritis. I own those diagnoses.

What I’m not always able to tell is which disease is flaring. And usually I get it wrong. Usually my doctor will disagree with me.

But when I think back to my initial diagnosis, I think back to the fact that when I only had a diagnosis of RA, it didn’t feel quite right. It didn’t feel complete, like there was an important piece of the puzzle missing. And that piece was lupus.

So is there any harm in my new doctor viewing lupus as the bigger issue? I guess not. I guess it’s more of a mindset than definitive, considering that I have always had enough markers to be diagnosed with both illnesses.

And I’d like to think that our memberships in these communities are less tenuous than our ability to fit into a certain illness box. It’s not like I’m an RA sympathizer or an RA imposture. I HAVE RA. And I HAVE lupus. But more importantly, these are autoimmune diseases, and also chronic illnesses. Those things haven’t changed.

 So while my last rheumatologist treated me aggressively for RA, my new rheumatologist wants to treat me aggressively for lupus. And maybe that’s the trade off when you have multiple chronic illnesses. Because ultimately, I don’t really care which one we treat, as long as we don’t make the other one worse.

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? 

When The Shit Hits The Fan (Or When Patients' Rights Go Down The Toilet)

I had a colonoscopy nearly a month ago now.  And ever since then, my gut has been off.  A week after, my gut still seemed to be under the influence of the cleansing regimen.  But then a week and a half after, the total opposite happened.  Nothing was moving.  And it made me feel like shit.

So, sorry if this is TMI, but I had this incredible, uncomfortable urge to go to the bathroom.  But despite what felt like a hundred attempts, nothing happened. 

I tried everything I could think of; laxatives, a hot bath, exercise, an enema.  Nada.  Nothing really worked. 

And it was hard for me to walk.  I was in intense pain.  And I couldn’t even stomach food.  Just the thought of putting something else into my body made me feel queasy. 

I realize that something is very wrong here.  And I’ll admit that it made me freak out a little.  I don’t like it when individual systems start going awry.  It makes me wonder what’s next. 

I didn’t want to make a big deal out of it, but I decided to try and get in to see my primary care doctor, just to make sure that there wasn’t anything obvious going on that needed to be taken care of immediately. 

Because I don’t think someone my age, who is relatively active, and tries to eat a balanced diet, drink a lot of water, etc., should have this problem to the degree that I do.  And my PCP agreed.  She said that I am doing everything right.  So why am I having such a problem?

As for the results of the colonoscopy, they were rather inconclusive.  Aside from a few minor things, everything appeared normal.  But everything is NOT normal.  Maybe the problem is not located in my gut.  Maybe it’s farther on down the line.  You know what I’m saying?  Maybe I have a tight ass.  Yes, that’s my official diagnosis.

And for those who don’t know the physiology, I’ll give you a little lesson. 

The problem with stimulant laxatives, such as Ducolax and Correctol, is that they can cause severe stomach cramps.  On the other hand, laxatives like Miralax work by basically injecting water into your gut, which is designed to help get things moving.  Personally, in my experience, I have noticed that your body can become immune to laxatives.  Even though my GI doctor has told me that pretty much anyone can take Miralax on a daily basis, I have found that for me, it eventually stops doing anything.  That leads to the type of situation that landed me in the hospital at the end of last year.  My body wasn’t moving anything on its own.  This can lead to a bowel obstruction, or worse.    

When I saw my PCP a few weeks ago, I was having some problems, which have only continued.  She agreed that I should either get in to see my GI doc before my late November appointment (which has been rescheduled, read: pushed back, three times already) or I should start seeing a new doctor, one who is better-suited to deal with my issues.  She wrote me a new referral and sent me to managed care.  Managed care called GI and basically they refused to do either of the aforementioned things.

If you recall, this isn’t the first time that GI has been unhelpful in dealing with scheduling issues.  So for the last two weeks, I have been off and on the phone with GI, trying to come to some resolution.  I think part of the problem is that “chronic constipation” is a bullshit diagnosis that no ones take particularly seriously.  The problem is more like EPIC FAIL.  At times I feel like I am tethered to the bathroom. 

My current GI doc is an uber-specialist.   I was originally sent to her because my rheumatologist is friends with her, and he also suspected that I had Colitis caused by Cellcept.  Well, Colitis is not my problem, and my GI doc specializes in that.  I think that compared to most of her patients, my GI problems probably are minor.  But it’s all relative, and my life is being negatively impacted by my gut issues.  While I give her props for being the one to do my colonoscopy, she basically had no clue who I was at my last appointment.  And that was very discouraging.  I do believe that she is a great doctor, but I think after three years, with no real resolution of my problem, she’s not the doctor for me. 

Oh, but wait.  GI is refusing to allow me to see a different doctor to get a second opinion.  When did a patient lose that right?  I mean, really?  You’re telling me that the earliest my doctor can see me is November.  And when I ask if I can get in to see some one, anyone, earlier than that, you flat out refuse to let me do that?

Isn’t it endlessly ironic that GI has such a stick up its ass?  I have really tried to be nice, but I may need to call in reinforcements, namely my contact at Patient Relations, who helped me deal with GI last time, when GI refused to give me an appointment within the two weeks that was required after I was discharged from the hospital.   

To be honest, if GI wants to ice me out, that’s fine.  Just wait until I end up in the hospital again.  Then GI will have a real fight on its hands, because while I said I am having problems – and my PCP wholeheartedly agreed – GI is dragging its feet, and I don’t really understand why.

I suspect that this problem is not totally separate, and is directly related to my other health issues because I never had them prior to getting sick.  I do suspect that some of the problem is being caused by medication.  Although since I have finally found a regimen that works, I am not anxious to start playing around with things.

But I’ll tell you one thing.  If the problem really is simply constipation, it needs to get in check, because right now, it’s worse than my lupus and RA symptoms. 

Now isn’t that a load of shit right there?

Is Chronic Illness A Temporary Home?

‘This is my temporary home
It’s not where I belong.
Windows and rooms that I’m passin’ through.
This is just a stop, on the way to where I’m going.
I'm not afraid because I know this is my
Temporary Home.’

-         “Temporary Home,” Carrie Underwood

I haven’t written for about two weeks, and I’ve been hiding out a bit.  I’ve had a lot on my mind recently. 

I’ll admit.  Until recently, it had been a long time since I thought about my diagnoses.  I mean, I think about lupus and rheumatoid arthritis all the time.  But it has been awhile since I questioned whether these labels were the correct ones.

Why is this?  Well, in the course of doing my dissertation research, at one of the conferences I attended, when talking to one of the organization heads, she asked me if my doctors were sure that I had lupus.  She suggested that symptoms of growth hormone deficiency in adults can masquerade as lupus symptoms.

I don’t even remember how we got on the subject.  But this person suggested that, despite my being born three months early, she said that given my parents’ heights at 5’6”/5’7”, I should have fallen somewhere in the middle between my actual height now as an adult and what my height should have been. 

Given this news, I was torn.  Should I explore this further?  In some ways, it seemed a bit off to me.  But the reality is, this isn’t something that my doctors would have tested for.  It takes a special kind of test, which is usually ordered by an endocrinologist.

In some ways, this experience took me back to my pre-diagnosis days, when people were suggesting snake oil cures, and all sorts of diseases, from the easily curable to the almost always fatal.

The reality is, though, that I don’t want to be on chemotherapeutic agents and drugs that are no longer commercially available in the United States, if I don’t have the illnesses to warrant such treatment. 

Having a growth hormone deficiency as an adult would require a daily injection with growth hormone.  Yes, the precise type of treatment (IV and injection therapies) that I’ve tried to avoid thus far.

I knew that my doctors would be a hard sell, and to them, this probably seemed like a harebrained idea.  But I needed to know.  Part of me wished I could just forget that the conversation ever occurred.  But another part of me asked the question what if? 

Part of me hoped that was the case.  Goodbye lupus and rheumatoid arthritis.  But part of me hoped it wasn’t, because I feel that I’m finally at a place of acceptance when it comes to my illnesses.

I was never one of those kids who started off growing “normally” and fell off the growth charts.  I was never on the growth charts to begin with.  I was born at 27 weeks gestation, weighing in at two pounds, three ounces.  I spent the first four months of my life in the neonatal intensive care unit.

To my parents and doctors, the fact that I escaped so many of the problems that premature babies tend to have – especially in the mid- to late-eighties, when babies my size almost universally did not survive – and the fact that I was normal health-wise and above average developmentally, was the concern, not that I was small.  But this has always been an issue in my life.

So I asked my primary care doctor.  And she told me to ask my rheumatologist.

So I wrote my rheumatologist the following e-mail: “I saw Dr. [PCP] today - we discussed several things - and she said this was something to ask you.  In the course of my dissertation research (which is on something sort of unrelated), someone mentioned to me that the symptoms of lupus and of a growth hormone deficiency in adults can be similar.  I know that that is not something that ever would have been looked at.  Do you think this is something to pursue, if only to rule out?  I don't want you to think that I am not confident in your diagnoses, I am.  It’s just that this person has put this bug into my butt, and it’s something I’ve been thinking about.”

My rheumatologist said what I expected him to say: “I have not heard of this connection. As you have the typical auto-antibody markers of lupus I do not know that this would be worth pursuing.”

To be honest, the person that put this idea into my head really had no business providing this unsolicited advice.  I didn’t ask for it.  I certainly didn’t want it.  And it was making me question things about myself that I really didn’t want to question.  I’m sure that this person came from a place of good intent, and was truly trying to be helpful, but it didn’t really feel that way.  It actually made me feel a bit queasy.    

I did read about the symptoms of GHD in adults, and to me, the thing that stuck out is that the symptoms seemed to be more psychological than physical.  And they are pretty broad.  I also went back and looked at the symptoms of lupus.  And like it or not, they fit so well with how I’ve felt over the last several years.  It’s not just that the lab work bears it out, as my rheumatologist said.  The way I feel bears it out, too.

And based on the way I’ve felt the last few days, with the humidity kicking up the lupus, and the change in barometric pressure kicking up the arthritis, I feel more confident than ever that this is what I’ve got going on.

So that’s it.  “We” will not be pursuing this other idea.

And for now, even though my current diagnoses are sticking, they make me realize that diagnosis is a transient state.  It’s rarely absolute.  It’s rarely clear cut. 

Even after three years of being diagnosed with lupus and rheumatoid arthritis, and finally being on a medication regimen that seems to be working reasonably well, there were things that caused me to question.  I didn’t want to question, believe me.  But I did.   

And what I realize is, irrespective of the specifics of this situation, this isn’t the first or the last time that something like this will come up.  And it’s not the first or last time that I will question my doctors. 

The unknowns of chronic illness are the most difficult aspect, in my opinion, and I think that’s what made this suggestion seem so important.  What if my diagnoses are incorrect?  What if I have this other issue?  The what ifs could go on and on endlessly, but they aren’t productive (for me, at least) at this point.  So it wasn’t really so much about what if I have GHD.  It was more of what if I don’t have what I think I have, and have come to accept?

Just as diagnosis is transient, so too is life itself.  Everything is temporary.  This body.  This life.

So I’m still here.  And for now, so are lupus and rheumatoid arthritis.