Arthritis Foundation’s Ease Of Use Products

As many of you know, we gained an extra hour last weekend as a result of the end of daylight savings time. 

Lately I have been experiencing a lot of fatigue related to my RA, and was grateful to have an extra hour, even though I feel like I need about an extra 24-hours.

One way to reduce fatigue, once you’ve gained the extra hour and are still tired, is to make sure you are sleeping on comfortable, supportive products.

The Arthritis Foundation has an Ease-of-Use Commendation, which recognizes products that attempt to make life easier for people with arthritis and other mobility impairments.

This includes Tempur-Pedic pillows and beds.  While I haven’t tried these products myself, the pictures look comfy. 

The Ease-of-Use Commendation also includes other types of products, such as telephones, pots and pans, pens, tools, and other adaptive aids that are helpful to people with RA. 

When my illnesses were totally not under control when I first got sick, I was sleeping terribly.  My whole body felt like it was crushing in on itself when I laid down, so sleeping wasn’t very comfortable.  And being sleep deprived was not helpful to my physical and emotional health. 

If you have RA or other physical limitations, be sure to look for the Ease-of-Use Commendation, and bring some products home today. 

These Chronic Bitches Be Crazy (And The Healthy Ones Too)…*

There’s a rant I’ve been meaning to post for a long time.  It was in response to a completely awful comment that had been posted on a fellow blogger’s site.  But, for whatever reason, I never posted it.  So I’m going to go off on that rant, and then explain why it is particularly salient to me right now.

The comment was from a healthy person, which basically suggested that if the chronically ill person would just shut up and stop complaining, they would be cured.

We’ve all had our fair share of people who won’t believe everything we write, will offer snake oil cures, or will go as far as to say that our illnesses are created in our minds.  There are healthy people who will tell us to get over ourselves or offer advice when they really have no place in the conversation in the first place. 

But by virtue of blogging, we put it out there, and we run the risk of people reading it who just can’t possibly understand. 

You know, I’m the first to admit that I don’t always take stellar care of myself.  My diet isn’t always as balanced as it should be.  And there a host of other things.  But the bottom line is, the things that I could do better are not killing me. 

Self-blame is NOT the answer people.  I didn’t get lupus because I’m a bad person or because I did something to deserve it.  It happens.  Shit happens.  Things happen that we can’t explain or understand, but we have to deal with as best we can.  We have to go on living.

And these naysayers suggest that if we stopped being so self-absorbed, we’d be cured.  Yeah.  Uh huh.  Because so many of the chronically ill people I know love to wallow in self-pity.  NOT!

In my dreams, if I could be sick or healthy, of course I’d be healthy.  But if I was healthy, I’m not sure I’d be as compassionate and empathetic as I am (this post notwithstanding).

Seriously.  Go F*** Yourself.  

And when you get sick, and feel like shit physically and emotionally, don’t come crying to me. 

And when you get sick, it’s going to have nothing to do with being faint of character, right?  When it comes to you, it’s merely that the universe conspired against you.  Funny how that works.

I feel terrible for people like this because they are so ridiculously out of touch with reality.  They are the ones that have problems.  Not us.  One day they’ll be faced with something they never imagined, and they’ll shit their pants trying to figure out what to do about it. 

I have to believe these people weren’t born moronic.  They became it.  And then decided to pepper the world with their unwanted and unwarranted opinions.   

In fact, I think we chronically ill folk appreciate the hell out of life.  We don’t take the good days for granted.

And wow, what a wonderful life you live indeed when you have time to spew this crap. 

And I know, this is a bit the pot calling the kettle because I’m stooping to their level when I shouldn’t even engage.  But it’s hard not to.  And it’s not just for me.  It’s for all of my chronically ill blogger friends, because I know that none of us are immune to these kinds of people.

You know, a truly happy person wouldn’t take other people down.  Don’t they realize that their ignorance runs deep, and the things they say hurt and offend? 

However, I’ve discovered recently that there’s something worse than these idiots that read our blogs once and offer an opinion based on nothing more than their ignorant thoughts.  It’s mudslinging that comes from another chronically ill blogger.  In some ways, this is harder, I think, to take, than the crap that comes from the healthy, “well-meaning morons.” 

This is because they aren’t in our shoes and they can’t imagine being in our shoes and could never understand in less they were in our shoes.  And let’s be honest.  Most of us don’t wish illness on anyone. 

So when one chronically ill blogger rags on another one for seemingly no reason, it hurts a lot of us. 

And I’ll admit.  I’m a bit biased.  I really like ChronicBabe.  I’ve met Jenni in-person and she’s super cool. 

I’m not going to explicitly call the other person out here.  But I’ll link to Jenni’s response, and you can get the skinny on the situation (Are the qualities of a ChronicMom and of a ChronicBABE mutually exclusive?).  Or not.  It’s really not 100% important exactly what was said.  It’s what it intimated.  Basically the gist is that chronically ill moms are on a totally different level than chronically ill non-moms.

One thing that I find totally ridiculous about this comment is the fact that many women in our community want to have children and can’t, or struggle with trying to balance health and getting pregnant.  So what if ChronicBabe isn’t childless by choice?  And what if she is?  Basically this means that chronically ill women with children have it harder than chronically ill women without children.  This seems like faulty logic to me. 

As chronically ill women, we have shared experiences, regardless of illness type.  And it’s true that chronically ill moms may have unique challenges that women without children don’t have.  But I don’t think that chronically ill moms necessarily have it harder or worse than non-moms.  I think it’s a mistake to factionalize our community in this way.  It’s concerning to me.   

It’s one thing when there are rifts between chronically ill bloggers and the well-meaning, but ignorant, healthy people.  But it’s another for there to be rifts between one chronically ill blogger and another.

You know, I’m a student, and I think it would be easy to think that my life as a chronically ill person is more difficult than someone who is not a student.  But I can’t say that.  There is absolutely nothing based in reality that makes it so.

So why this need to compare suffering?  Why try and push the agenda that one person has it harder than the other?  I read a lot of blogs by people with chronic illnesses that have a wide range of conditions; diabetes, cystic fibrosis, cancer, colitis, and the list goes on and on.  I am sure there are some people who may feel that they have it harder.  Maybe they are terminal.  But whatever the case may be, more often than not, I find that what connects us is what we have in common rather than our differences. 

I’ve shared this story several times, but it’s something I’ll never forget, and seems appropriate once again.  I was getting steroid infusions and the girl next to me, who was maybe a few years older than me, was getting chemo.  I was new to the infusion room, so I didn’t know all the rules, and was trying to ask the nurse if it was okay for me to listen to my IPod.  The nurse didn’t hear me, but the girl next to me did.  And she said 10 words to me that I will always remember: “You do whatever you need to do to get through it.”  I looked at her, and thought, this girl has cancer, and she’s cheering me on.  But in that moment, in that infusion room, we were equals.  It didn’t matter what diseases we had or what was being pumped into us. 

And right around that same time, I started my blog.  And this is why I blog.  This is what keeps me writing.  It’s the experiences I shared with all of you, and you’ve shared with me.  It’s the encouragement that I receive, and hope that I offer to others.  It’s not the mudslinging.  It’s not the mean and negative comments by healthy people.  It’s everyone reading this right now, and those who have read my blog in the past, and those who will read my blog in the future.   

I know people won’t always agree with me, and that’s fine.  But I hope that the ties that bind us are stronger than the ones that don’t.   

When a healthy person attacks someone in our community, we spring into action.  We take the offending person to task, and we comfort the offended.  And I think the same rules apply when there is negative chronic-on-chronic action.  So I’m standing up for my friend, and hopefully for most chronic chicks out there when I say that we should celebrate our similarities, and acknowledge, but nicely, our differences.  A plurality of opinions in this community is important, as long as they remain respectful to others.  Words hurt.  But so does the absence of action.    

I guess the other thing is that as chronically ill people, we don’t have the market cornered on suffering.  A hurricane just pounded the East Coast.  Some people lost everything.  Illness isn’t the only bad thing that can happen in life.  I guess there is the old adage, “At least you have your health.”  But that’s really no consolation to those of us that don’t.  But the reality is, if we can’t relate to other chronically ill people, who can we relate to?          

* So I’d like to clarify, in case you had concerns, that this title is rather tongue-in-cheek. 

Things That Medication Can’t Cure

Well, since my month-long flare that lasted from the middle of August to the middle of September, I feel like I’ve been on the upswing.  

Right now, I am not on many heavy-duty meds, although my rheum and I have been toying with the possibility of daily low-dose prednisone.

I can’t really explain exactly what is going on right now in terms of my illnesses.  On the one hand, it’s great that I seem to have gotten a reprieve.  But on the other hand, it’s a little scary.  I can tell that this is the calm before the storm, especially because the next few months are going to be insanely busy.  More about that in a bit.  But back to the way I’ve been feeling.

Yesterday, for instance, I woke up with a headache, feeling nauseous and dizzy, and feeling very overheated and like my blood pressure was low. (And the headache is still there this morning…)

I get this feeling pretty regularly, as if my bodily systems can’t really control themselves.  I feel plastered to a wall.  Yeah, it’s that feeling.

I had things I had to do in the morning, so I did what I had to do while the way I was feeling lasted for several hours.  I decided that since I was feeling better, I would go to kickboxing.   

My instructor said this was the best week I’ve had since the Humira craziness and the flare. 

But then I bottomed out again, and couldn’t wait to get home.  My head started hurting, and it’s just that general feeling of being unwell that reminds you that you aren’t actually well in the “normal” people sense of the word.

And it’s the crazy, unpredictable cycling through moments of feeling bad to moments of feeling good, that have been one of the biggest problems for me since I got sick. 

It’s hard to make plans when you feel great one minute, terrible the next, and better the next.  And this could happen multiple times an hour, day, week, month…

I can tell you what part of this is.  Rain be damned.  Whenever there are low-lying clouds and a change in barometric pressure, I feel it in my head and behind my eyes.  Even if my joints aren’t screaming, this screams RA having a field day.  As if it being cold and gray isn’t depressing enough…

And there’s something else.  I’m stressed out.  Like really.  There’s no way around it.

Between November and December, I’ll be traveling to New York on two separate occasions.  And these are both trips in which I will have to be at the top of my game.  

I’m trying to teach, write a quality dissertation, and plan for my future.

I can feel how an overactive, unquiet mind can make an unquiet body even more riled up. 

I’m also trying to take advantage of mostly feeling good to get things done, but don’t want to overdue it.  Although that seems impossible because the mind-numbing fatigue has crept in again, and my body forces me to crash.

And these are things that can’t really be helped by medication.  Medication can’t really control the weather or mitigate its effects, it can’t control my stress level, and it can’t really break through the fatigue. 

So I’m okay with being mostly medication-less for now because I’m not sure how much it would help, anyway.  But I’m not sure how long it will last…

Lupus And RA Deficit, And Finding A Treatment That Works

Lately, I’m starting at a deficit.  I don’t wake up feeling energized and refreshed, even when I sleep for 10 or 12 hours. 

My boyfriend has made the point that I’m not a morning person.

That hasn’t always been the case.

I used to be a morning person, a late night person, pretty much an any-time-of-day person.  That was before I got sick. 

Now, when I wake up stiff and in pain, and it takes me time to get going, it’s my arthritis that’s talking, not my personality.

When I was in the midst of the latest flare I had, I wished that I could just go to sleep and wake up when the flare was over.

But there’s so much I would miss.

And the thought of sleeping my life away is scary and depressing.

Sometimes you do have to drag yourself out of bed and will yourself to face the day.  I get that.  And sometimes you feel better after you do, but sometimes that’s just totally impossible.

My flare seems to have abated, which means that it looks like Humira caused my lupus to flare.  Which means that I am off Humira for good, and it’s back to the drawing board.

We knew from the beginning that one of the side-effects of Humira is a lupus-like syndrome.  This worried me from the start, since I already have lupus.  And we should have worried, because that’s exactly what it did to me.

I ran into my rheumatologist the other day.  I had been meaning to e-mail him, but hadn’t got around to it.  He suggested that for sure we go back to low-dose daily Prednisone. 

He also suggested adding Tacrolimus to my treatment regimen.  I did some looking around.  Most of the articles about Tacrolimus and RA, and the few on lupus, are all relatively recent, within the last three years.

I’m not convinced.  This drug started out as an anti-organ rejection drug – like CellCept, which I was on several years ago – has been used to treat colitis, and is now being used for people with RA.  The safety and efficacy, from what I read on PubMed, is mixed. 

I wish this was an easy decision, an open-and-shut case.  But it’s not.  The way I’m feeling right now, I could live with this.  On the other hand, I get tired a lot more easily than before; I get winded from walking up three flights of stairs to my apartment.  There are subtle changes I see that don’t make me happy.  I’m not back to where I was pre-Humira or pre-Humira-induced lupus flare.  And that’s frustrating.  It’s also getting colder, and the winter always does a number on my joint pain and mobility. 

This is really the first time that I’ve had a lot of questions after reading about a treatment.  Because while we can’t plan for the things we don’t know about yet, we can plan, and should be vigilant about, the things we do. 

I worry that my chronically elevated liver enzymes, which my PCP recently postulated may be autoimmune hepatitis, my ongoing gyno issues, and the fact that I would like to have a child someday, are all making me reason against Tacrolimus.

I feel like before I start TAC, I need to see a liver specialist, talk to my PCP about my gyno issues, and see if I can meet with a high-risk obstetrician or genetic counselor to talk about what we would be looking at if I begin TAC sometime in the next few months. 

As much as I appreciate my rheumatologist for all that he does for me, he hasn’t been very good at approaching the “How will this impact my future fertility?” question.  He seems to think we should only factor it in when it isn’t hypothetical anymore.  But it’s not.  It’s not a question of if, but when.  And it is also something that I really care about. 

Maybe it would be different if the situation was “take this or you die,” but that’s not the case right now.  And I hope it never is.

Is it bad that the thought of daily Prednisone gives me nightmares?  I’ve always said that I wouldn’t let fear get in the way of my treatment. 

So I’ll say it again.  I’m torn.  Go back to the drawing board and experiment with a new med or tough it out for the next few months and see if I can make it on my own? 

I could tell by the look on my rheum’s face that he has doubts, too.  And that concerns me more than anything else.

I’ve realized lately that I have to pick my battles and commitments.  I can’t do everything.

There are some really promising things happening in my life right now, and while I would love to focus on the good, I am filled with anxiety about the future.  I wish there was a clear-cut answer here.  I wish I knew which decision to make that would be the most efficacious. 

On the one hand, I won’t know if I don’t try.  On the other hand, though, what if I am putting myself at risk for worse things than what I am facing right now? 

And I appreciate so much that my mom is doing some of her own research on TAC, and that my boyfriend says that he will support whatever decision I make.  My health has to come first, but in this case I don’t really know if that means starting TAC or not, especially someone who can’t be on Methotrexate, like me, and cannot be on a biologic, either.

If anyone has heard about Tacrolimus, or on the off chance that you’ve taken it, please, please, please comment or e-mail me.  I would love to hear from someone who has been on it successfully for RA.