Archive for the ‘Uncategorized’ Category

Medless

Thursday, December 15th, 2011

No medicine

I will explain the title of this post in a minute, but there’s so much else to catch up on. Where do I begin?

This year has been so full of change that it’s hard to know where to start. Those of you who read my blog regularly know that my family and I moved across the country back in September. So far, it has been an incredibly positive change. I can’t even begin to express what a difference it has made in our lives to have supportive family around. I can bring my son over to my parents’ house and go have a long, luxurious lunch with girlfriends. My husband and I can go out on dates. We can get to my doctor and hospital visits without bringing our son or worrying about who we can get to watch him. Best of all, my son is thriving, and his bond with his grandparents is a truly beautiful thing to see. There are negatives, too – we miss our old friends, and the cold weather has been a rough adjustment. But on the whole, it’s been wonderful.

My health has been confusing. For a long time, the only real symptoms I’ve been having are terrible headaches and some weirdness in my fingers. I finally had an MRI and they found damage in my cervical spine, which may or may not have anything to do with the RA. I had two cervical epidurals, a month apart. The first one was amazing – I was totally pain free for almost a month! I really couldn’t believe it. When the pain started coming back, I had the second one. Then, unfortunately, I fell down the stairs a few days later and was so banged up that I couldn’t really tell if it had helped or not. I did know that I was having headaches again, though. I went to the pain management doctor who had done the procedure, and he checked my range of motion and nerve function. He concluded that the epidurals had done their job – the problems in my hands were completely gone – and that the headaches were coming from something else, most likely muscle tension. So I’m going to see a headache specialist in January. On the bright side, he prescribed some Zanaflex to tide me over and it really does help when the headaches hit – looks like his theory is probably correct.

Next came a good news/bad news kind of situation. For the past week or so, I have been experiencing terrible pain and a new level of fatigue. My feet have been killing me, and pain radiates from my back all the way down my left leg. It was frustrating to find myself limping around again – it’s been awhile since I had lower body symptoms. So I saw my rheumatologist yesterday. The good news: my bloodwork looks great, and he couldn’t find any joint inflammation at all. The bad news: he thinks this may mean that I have now developed fibromyalgia. I am very resistant to this idea – I really, really don’t want another chronic condition! Anyway, we are holding off on drawing any definite conclusions for now. After all, I did fall down the stairs a few weeks ago, and we both want to see how I do after some more time passes. In the meantime, I want to see what massage, gentle yoga, and good sleep can do for me.

Okay, so now on to the medless part. My husband and I have decided that we would like to try to have another baby. We talked to the rheumatologist about this yesterday, and he approved. My RA seems to be in a really good place right now. It’s possible that it’s been in a good place for quite awhle, and that the headache and muscle pain were confusing the issue. So right now we are in the process of stopping all of my medications, with the exception of Pulmicort for my asthma, and seeing what happens.

Being medless is weirdly exhilarating, like hang-gliding. I push off from the cliff and hope that my remission-like state holds me up, at least until I become pregnant. (I went into remission when I was pregnant with my son, so I’m hopeful that it will happen again.) The freedom is dizzying – no more med side effects, no more panicking if I forget my pills. There are still vitamins to take, but it’s not the same. My med-free body feels great, healthier. At the same time, I know that like hang-gliding, it’s risky. It’s a race against time, and one that I can’t be sure I will win.

hanggliding

Inspired

Tuesday, November 1st, 2011

Every day I follow a whole bunch of blogs written by other people with chronic illnesses. Most of these blogs can be found on my homepage, in a sidebar called “Adventures in the Autoimmune World.” Since I don’t tend to leave comments as often as I should, some of these people have no idea how they inspire me, teach me, move me, or make me feel less alone. So today, I thought I’d mention some of the great ideas I’ve gotten from other people’s posts lately.

In honor of World Arthritis Day, Rheumatoid Arthritis Guy presented a challenge: Reclaim one thing. (You can read more about it by following the link.) In response to this challenge, I have decided to work towards taking back something that used to mean a lot to me: Irish dancing. I stopped doing it for practical reasons when I was first diagnosed with RA – I was having problems with my feet and it just became too hard, too painful. I stayed away from my dance friends and dance events because it made me too sad. Later, when my feet started feeling better, I still didn’t go back. I had simply gotten into the habit of thinking that I was limited, and I assumed that I wouldn’t be able to do it.

Now I want to challenge this assumption. It’s true that it might not work out. It’s true that Irish dancing isn’t necessarily the best thing for my joints. But I feel that I gave up too early and too easily. I don’t want to assume that I can’t do it – I want to KNOW whether or not I can.

One of the tools I’m using to work towards this goal is an online game called “Superbetter,” which I also learned about in a post by Rheumatoid Arthritis Guy. It’s in beta-testing right now, and out of respect for the programmer’s privacy, I won’t say much about my experiences so far with the game. In a nutshell, the game provides a framework to help you achieve health-related goals that you set for yourself. You can learn more about Superbetter here.

In this post, Carla from Carla’s Corner tipped me off to another great tool – www.myfitnesspal.com. This is a good FREE way to track your eating and exercise. I’ve only been using it for a little while, but they seem to have a great database of nutritional information. They also have a cool iPhone app, but I don’t have one – I still have a Dumb Phone.

Finally, WEGO Health has declared November National Blog Post Month. I’m too busy right now to do this, but some of my favorite bloggers are trying to post every day this month, and I’m looking forward to reading what they have to say. It’s made me think about participating in blog carnivals – something I generally don’t do. 

Anyway, I’m hoping that all of these ideas will help spark something in me. I’ve been feeling pretty unmotivated lately, and I really want to make some changes. I’m grateful for this community.

World Arthritis Day

Wednesday, October 12th, 2011

120-36-41.

If you don’t know what these numbers mean, please check out this page. In honor of World Arthritis Day, bloggers like me are posting their numbers, blogging, Tweeting, Facebooking, etc. to spread awareness about autoimmune arthritis.

By the way, please come and “like” my Facebook fan page! It’s getting very lonely over there!

In honor of this day, I am also reprinting the story of my diagnosis. This was originally posted in April, 2010 under the title “Rheumaversary.”

Monday, April 9, 2007

“You have rheumatoid arthritis,” the doctor said.

I looked at him. He waited for me to speak. I looked down at the table, at the long silver tray where the hypodermic needles lay waiting, loaded with hydrocortisone. The doctor was a hand specialist, and I had come to be treated for what I thought was tendonitis in my left thumb and right index finger. My mind reached back to the mother of an old boyfriend – she had rheumatoid arthritis. What did I know about her? She didn’t seem to have much wrong with her. I remembered that she had a massage therapist come to her house every week, and that she told me that she needed to avoid stress because it made her condition worse. From this, I had developed an impression of rheumatoid arthritis as something mild and possibly psychosomatic.

Then I looked over at the nurse. She looked stricken, as if the doctor had just told me something terrible. Why?

The doctor explained, slowly and gently, that while he could still give me the hydrocortisone shots, they would only help things temporarily, and that the problems would almost certainly come back in another joint. He showed me my blood test results. Something called the “rheumatoid factor,” which was supposed to be below 14, was listed as 468. He used words like “severe” and “aggressive” and “damage,” and told me that I needed to get in to see a rheumatologist as soon as I could. I just stared at him, trying to put what he was saying together with the impression of my old boyfriend’s mom.

I declined the shots, took the phone numbers he gave me, thanked him, and left the office. I went to my car, sat down inside, and called my husband. “He says I have rheumatoid arthritis,” I said. There was a lump in my throat and I didn’t know why.

The ironic part is that I turned down the shots because I was afraid of needles. I had no idea what was coming.

 

Thursday, April 12, 2007

My husband and I sat in the rheumatologist’s office. I liked it – it was messy, a trait that for some weird reason, I had always associated with creativity and intelligence. Under his white lab coat, the doctor was wearing a loud plaid shirt with a clashing tie. For some reason, I liked this too.

He fired information at us quickly, so quickly I could barely take it in. Words like “rheumatoid factor” and “sed rate,” “DMARDS” and “biologics” and “prednisone” flew through the air. Again, like the other doctor, he mentioned “severe” and “aggressive.” He kept saying, “We need to get this shut down.” I had done a little research by then, and what I had read scared me to death. The things he was saying didn’t make me any less scared, although he seemed pretty calm.

Then he said, “And, of course, you can’t get pregnant while you’re on these drugs. Were you planning to get pregnant?”

“Yes,” I said.

“I’d like to see you wait about two years. That should give us enough time to get this under control, and we can go from there.”

Two years? I was 36 years old, almost 37.

In an examining room, a nurse gave me two shots, one called Toradol and the other called Depo-Medrol. So much for avoiding the needles. She sent me home with a lab slip ordering more bloodwork (again, more needles?) and four prescriptions.

I called my mother and cried on the phone. “Two years! I can’t wait two years to have a baby.”

“If these drugs are really that dangerous, you should really take a pregnancy test before you start them,” she said.

“I don’t think I’m pregnant.”

“Just do it for me.”

 

Friday, April 13, 2007

Early morning. I left my husband sleeping in our bed and went into the bathroom. I took a pregnancy test out from under the sink. It was a cheap one; one of my friends had bought them in bulk when she was trying to conceive. I peed on the stick and left it lying on the counter, then went into another room and tried not to think about it. I hadn’t even missed a period; it was due in about four days.

A few minutes later, I realized that I had forgotten to set the timer. “Crap!” A lot more than three minutes had gone by, and I knew that the results were no longer considered valid if you waited too long. I looked at the stick anyway. It looked like there was a faint line in the test window, but it was too hard to tell.

I took out the expensive Clearblue Easy test I’d been saving. It was going to be two years of waiting – might as well use it now, right? This time I set the timer.

There it was, in words clear as day – “Pregnant.”

My heart was pounding. I went into the bedroom, woke my husband, and said, “I think I’m pregnant!”

“Really?” he said. He looked excited and happy.

“I don’t know,” I said. Then I started to cry. I cried because I was happy, because I was mixed up, because this wasn’t the way I had wanted this moment to happen. I cried because my husband’s birthday was in six days, and the timing would have been perfect – I would have just missed my period, and this could have been a wonderful birthday surprise. I cried because I had gotten two shots the day before and had no idea what they might do to the baby. Most of all, I cried because I didn’t know what was going to happen to me. Would I be okay without the medications for nine months? Would I be able to take care of the baby once he or she came?

We were only four months into our marriage, and everything had changed.

When Necking Just Isn’t Fun Anymore…

Wednesday, September 7th, 2011

Spine

Cool, huh? You can see my BRAIN! (Unfortunately, you can also see the fat rolls on the back of my neck – thank you, prednisone!)

So this is one of  many MRI shots of my neck. This one is pretty cool because you can really see the problem, which is right here:

Spine copy

C5 and C6, right in the middle of the picture – out of alignment, with bone spurring, and bulging a little bit into my spinal column. You can also see the problem in the X-rays, although they don’t show the spinal column issue:

Xray copy

There’s almost no space between those two vertebrae, and they are rubbing unpleasantly against each other and pinching nerves when they do. The spine guy said that he sees two different problems – one with the space between the vertebrae, and another involving arthritis of a facet joint. They are manifesting as two different sets of symptoms. The facet joint arthritis is apparently the culprit behind my miserable migraines; he was able to duplicate the problem in his office (which, unfortunately, meant suffering with the headache all day yesterday – ah, science!). The  nerve being pinched between the vertebrae is causing sensation loss in my right hand, which I hadn’t even noticed until the doctor did some tests yesterday. Ironically, I’ve been noticing a loss of function and dexterity in my LEFT hand when I play the piano – no clear explanation for that – and problems with my left wrist, mostly from a ganglion cyst. I guess they caused me to overlook the issues in my right hand!

Anyway, all of this isn’t that terrible. There are much worse things that can happen to a neck, and the doctor says this is pretty normal stuff – not even necessarily caused by the RA, although the RA certainly doesn’t help the situation. He has two different solutions for the two different problems and is going to start with the easier of the two - an epidural steroid injection, done in the OR under fluoroscopy. This doesn’t sound like a lot of fun, but I know people who have had them, and they really seemed to help. He thinks that this will take care of the hand, arm, and shoulder symptoms I am having.

Taking care of the headaches, however, could involve a facet joint injection, which might mean cauterizing some of the affected nerves to kill them off. This doesn’t sound like as much fun. Right now he’s planning to hold off on this – it’s possible that the epidural steroid injection will also help the headaches, so we’re going to give that a shot first. (No pun intended.)

I’m really not thrilled about any of this – shots in my spine don’t sound like a ton of fun. I’ve had steroid shots in my sacroiliac joints, feet, hands, and wrists before. But my neck? Ook…

I would love to hear from any of you who have had this sort of thing done!

And, just to leave things on a more fun note – one of my favorite MRI pictures! Is it me, or an alien? You decide!

alien

Changes

Saturday, September 3rd, 2011

There have been so many major upheavals lately that I don’t even know where to start. This has led to a kind of writing paralysis, and therefore silence on the blog. So let me try to push through it:

We have, at least for now, relocated to the East Coast. My family is out here, so we have much more support, help with childcare, etc. I don’t know how long we will be here – it depends on several factors. We came out here mainly because of issues with the RA. I have some nasty little things going on with my cervical spine, and I wanted to see a really great spine specialist to deal with them. There’s also a great rheumatologist out here, and I’m hoping that he’ll change things up and maybe get me closer to that elusive remission.

Also, Remicade Dream now has a fan page on Facebook! I am clueless about how to use this page and how to get people to “like” it. If you’re a regular reader, maybe you can “like” it, and let me know if you have a page too!  My page is at:

 http://www.facebook.com/#!/pages/Remicade-Dream/142092942551992

I’m seeing the spine guy and the new rheumatologist on Tuesday, so I’ll check in after that and let you know how everything goes.

RA Superbitch

Tuesday, June 14th, 2011

I don’t even know how to start this post.

Late last night, I learned that one of my favorite bloggers passed away. Her blog, Confessions of an RA Superbitch, was funny, irreverent, and said so many of the things I’d love to be able to say. I don’t know the details of her death. A few months ago, she wrote that there was “some rather scary stuff happening with the RA.” Then one of her friends posted this week that she died peacefully at home with her husband and son. From this, I can only conclude that she died of RA complications.

This has really thrown me for a loop. When I read the news last night, I couldn’t stop crying. I didn’t know RA SB in person; I didn’t even know her real name. I’m not the type to cry when, for example, famous people die, or people I don’t know well. In general, I don’t cry much at all. So my emotional response was pretty intense and unexpected.

I think it’s pretty clear why. RA SB and I were close in age, both had young sons, both taught college. We commented on each other’s blogs because each of us tended to say things that resonated with the other. She even observed once that she, Rheumatoid Arthritis Guy, and I, who are all around the same age, seemed to experience flares around the same time. I related to her. I loved the spunky way she wrote about her illness. And the fact that she probably died of the same disease that I have is just too much for me to face right now. My heart is breaking for her husband and son. Her last post, back in April, broke my heart even then – it’s even harder to read now.

I will miss you, Superbitch. I don’t know what else to say.

Two Graduations

Friday, May 20th, 2011

P1020838

As some of you know from reading this blog, I completed my doctorate earlier this year. This week, I attended my official graduation ceremony (pictured above). It was an incredible day on so many levels.

There were times when I thought it would never happen. I entered my doctoral program as a young, healthy single woman. I left it as a married woman with a child and RA. In many ways, my memories of my years as a doctoral student are inextricably tied with my journey with RA. I struggled with the label “disabled,” fought against the idea of using the disabled services offered by my university. This struggle lasted right up to the end, when I accepted a disabled parking permit for my graduation day but still insisted on walking in the ceremony itself, instead of taking disabled seating. I also did something foolish – at the end of the ceremony, my friends got impatient with the logjam at the steps leading down from the bleachers where we were seated, and opted instead to jump down the bleachers themselves. I jumped with them, and paid for this decision with two days of pain. Maybe this was worth it for the chance to feel like a regular, non-sick person for a day. Or maybe it just shows that on some level, I still wrestle with denial.

Either way, I am still amazed that I made it. I was diagnosed with RA and also got pregnant during my first year in the program. I had to learn to slow down, pace myself, accept the reality of a later graduation date than I had originally anticipated. I learned to use voice-activated software and used it to write a large chunk of my 227-page dissertation. I also had to balance all of this with taking care of a baby. Nothing went quite the way I planned it – but I finished, and now my son calls me Doctor Mommy. :-)

There was also a second graduation in recent months, one that was a little harder to take. I graduated from this:

new disabled temp

 …to this:

new disabled perm

Logically, I know that this is a good thing. With the temporary permit, every six months I had to deal with the logistics of getting the documentation from my doctor and then endure a miserable, frustrating trip to the DMV, plus pay a fee. Now I can renew by mail in two years, without having to provide any more documentation or pay any money. But still, the idea that I am “permanently disabled” is hard to swallow.

The reason this came to pass is that the law in my state says that a person cannot have more than six consecutive temporary permits. The fact that I have means that I have been using disabled parking permits for three years now. That, too, was hard to face. I really never stopped thinking of myself as “temporarily” disabled; I guess the state sees it differently. I know that this doesn’t mean anything from a medical perspective, but it was sobering to realize that it really has been that long.

In time, I would like to be grateful for the second graduation and the conveniences it brings. For now, I will focus on celebrating the first graduation.

Appreciation

Thursday, May 5th, 2011

I recently learned that my blog has been named as one of  “40 Excellent Blogs for Arthritis Support” by NursingDegree.net. This has really made me think. It’s also given me the kick in the pants I think I needed to start writing again.

The list is divided into blogs of two types. The first are called “Informational Resources.” Many of my favorites are included in this list, and I really value what these people do. Sometimes I feel guilty that my blog isn’t more like these – I feel that I should be doing more to help others with RA.

But then I look at the second part of the list, called “Living With Arthritis.” This is the category to which my blog belongs. And there, again, are so many blogs I love to read. And I remember how many times someone has written to me to tell me that my blog puts into words (or sometimes music) the very things they think and feel. Some have shown my blog to their partners, family, or friends, and said, “This is what I’ve been trying to say – this is what it’s like for me.” And that, I realize, is of value.

I have been hiding out because things have been hard lately, and I’ve been pretty depressed. I guess I haven’t wanted to put that out there; so many people in our community work hard to stay positive, and I admire them. I also tend to go silent when things are wrong, even with my real-life friends. (This is something that started with the RA – oddly, I used to share everything before.) But, unfortunately, sometimes depression is part of the deal with chronic illness, and if I want to be honest about my experiences, I have to include it. There are some things I still don’t want to write about because they are too personal, but there are plenty of other things I could share. Some are good, some are bad, but they are all part of the deal with RA.

So I will try to do better. I’m so grateful to those of you who continue to read my words and come back even when I’ve been silent for awhile. I’ve been silent across the board – not participating in RA bulletin boards, not commenting on other people’s blogs. I want you to know, too, that if you’re on the list of blogs on my homepage, I still read you whenever you post. I’ll try to be better about commenting – it’s nice to know that people are out there!

Summary

Friday, April 8th, 2011

Pills

In 2010, I had:

29 doctor’s office visits

19 sets of labs drawn

17 physical therapy appointments

8 trips to the hospital for Remicade infusions

3 trips to the hospital/urgent care for other reasons

96 prescriptions filled (not including Remicade)

 

And the sad thing is, these numbers are smaller than I thought they would be.

Privacy and Pain

Saturday, March 12th, 2011

privacy

 

In this article about Mark Zuckerberg, creator of Facebook, author Lev Grossman describes the early days of the internet as follows:

The presiding myth of the Internet through the 1980s and 1990s was that when you went online, you could shed your earthly baggage and be whoever you wanted. Your age, your gender, your race, your job, your marriage, where you lived, where you went to school – all that fell away.

By contrast, the viewpoint espoused by Zuckerberg, and the concept on which Facebook is built, is “the fact that people yearned not to be liberated from their daily lives but to be more deeply embedded in them.” Today, it’s all about connecting, networking, sharing everything with everybody. You don’t get to be different people in different places – you have one online persona that you present to everyone.

Well, fine, but I don’t really think life works that way. Not all of us want to share everything with everyone, but at the same time, it’s not fun to be left out. So we do a sort of delicate dance between the right to a private life and the desire to be connected to people. Since becoming sick, I have discovered in myself an intense need for privacy that I never realized I had.

This blog is anonymous – my real name is in no way connected to it. This has given me the freedom to talk about my disease and its details in a way that might be of help to others who are going through the same thing, and it’s given me an outlet. But over time, this privacy has eroded somewhat. There are one or two people in my “real life” who have also seen this blog, and I need to be conscious of them when I write. There’s also another problem – I have become “Facebook friends” with several of the people on one of the RA boards I frequent. I have not shared my health issues with any of the people in my professional life, and so I never mention them on my Facebook page. The people from the RA board know this, and so far they have been completely respectful of this boundary. But it does leave me feeling strangely vulnerable – people from my “sick life,” who I have never met, have access to my “real life.”

I’m finding myself at an awkward spot with this right now. I’ve been going through some incredibly painful things in my personal life right now, things that are not about my illness. I have not even shared them with most of the people in my “real life” – just a select few. This blog could be a place to talk about them, if not for those few readers who actually know who I am. The RA boards could also be a place to talk about them, but I’d be concerned that someone might make an accidental remark on Facebook.

I don’t know how to explain why I can talk openly on this blog about the details of my illness but them clam up when it comes to other aspects of my life. When I was first diagnosed with RA, I was completely silent about it for about a year, only telling my immediate family and a few close friends. Maybe I needed the time and privacy for processing. It’s possible that the same thing is happening here. I’ve been reading blogs from others in the chronic illness world who are sharing their struggles more openly than I am right now. Reading them helps me, and I am grateful for them - maybe they are braver than I am? But I’ve also read blog entries by others who are wrestling with the same privacy issues as myself.

Right now, I feel a strong need for an anonymous place to talk about everything, but I am struggling, always keeping in mind that I don’t necessarily have complete anonymity here. The result has been complete radio silence on this blog for a long time.

Darn you, Mark Zuckerberg.