Breaking up is hard to do

I’ve decided to break up with my rheumatologist. I’ve been slowly coming to this conclusion over the last 8 months, now that I’ve been more ill than I’ve ever been with this disease, and I can see exactly how he has tried to help, or not help, as the case might be. I’ve been seeing this doctor for eight years now; I think that we should have enough of a relationship for him to know I’m not
just complaining, I’m in serious need of help. Yet, I feel like I’m chasing my tail with this guy. I feel like I can’t really depend on him in my time of need.

At last visit, he seemed to just throw his hands up in the air and say he didn’t know what else to do with me. Like, I was some disobedient child that was causing too much trouble. He suggested putting me back on the injectable I had just come off of in June, saying it might work again, but no other explanation. You can imagine my shock when he said this. I had just suffered through some of the worst pain I had ever suffered through on this medication, and he wanted me
to go back ON IT? Oh. Hell. No.

He had no other ideas, because we had tried everything, or so he thought.

I know I’m not the doctor, but I also know we had not tried everything. I had to remind him that we hadn’t tried Methotrexate, or Remecaid, which are two medications I know have worked for others. He seemed surprised that he hadn’t prescribed them yet, then immediately prescribed the Methotrexate. Uhmmm, okay? Did I just tell HIM what he needed to do for me? What is the point? Does this guy even read my chart before he comes in to see me?

I’ve been looking around online for different rheumatologists, and checking some websites to see how patients and other doctors rate them. There doesn’t seem to be enough data out there though. I don’t want to end up with another doctor who just prescribes meds to shut me up. I want a doctor who is generally concerned that I’m in a lot of pain and wants to help me. Maybe one who believes in the diet/RA connection? One who will offer advice on leading a different lifestyle,
maybe suggest meditation, or stress management, or SOMETHING. Does such a doctor exist?

I continue in my quest. I should have a new doctor by 2012. One last appointment with this doctor next month, and I’m done.

Massive update…

Darkest days

I think I experienced probably the darkest days I’ve ever dealt with in regards to this disease. I’d been getting progressively worst over the last 12 weeks, and it came to a peak four weekends ago. The pain and stiffness in my knees and ankles was so severe, that I could barely walk. My husband had to help get me out of bed, and off the couch. It was very scary, and I went through the gamut of emotions during those days. Not knowing whether that was to be my future, whether I was going to be able to work any longer, because I knew that if I continued as I was, there was no way I would be able to go work. I was taking painkillers and an anti-inflammatory, and still getting very little to no relief.

My next rheumy appointment was set for another week after this really bad phase started. I had been calling daily for weeks, trying to get in. If you recall, I’d already gone through 3 rounds of steroids, and was still getting worse. The first day I woke up and absolutely couldn’t walk, I called and demanded to be seen, as there was no way I would be able to make it another week. Luckily, they were able to get me in that very day. My doctor put me on another steroid immediately, this time long term, instead of just a pack, and changed my biologic injection from Humira to Simponi. I still had four days before my next injection was due, so even though I started the steroid, I still suffered greatly for the next four days. By then I was counting down the hours between painkillers and anti-inflammatories, and taking them more frequently than was prescribed.
On the fourth day, I woke up and immediately gave myself the injection. My rheumy had said that it would take a couple of months for it to really begin to help me, as it needs to build in my system. So, I still took my anti-inflammatory, and painkiller. By the afternoon, I was getting up off the couch on my own. The pain in my knees and ankles wasn’t as severe, and I was able to get up and move around. I cried (for the hundredth time that weekend) when I realized that my flare up was finally ending.

Since then…it’s been four weeks, and I’m doing okay. The monsoon season upon us, I have been pretty stiff. My injection is due in the next couple of days, so I’m definitely feeling it, but it’s still so much better than it was at its worst. I’ll take this over that any day.

Arthritis Walk

During this time frame, I made it to Santa Monica and did the arthritis walk. Thanks to the generosity of my family, friends, coworkers and a bake sale at work, not only did I meet my goal of $500, I exceeded it and raised $722. NICE!! I had family and friends join me for the walk, my nieces, nephew, my dearest friend from my high school days, and we had fun walking the short one mile walk. I’m so pleased I was able to do it, and I’m looking forward to doing it again!

My support team:

Love you guys!!

Food Panel…

In case anyone is wondering about the results of the food panels I had done, I’m disappointed (or not) to say that I am allergic to….nothing. Everything came back normal. I was upset, because I wanted it to be my miracle answer. Don’t eat wheat; it’s what’s causing your symptoms. But that wasn’t the case. However, even though I’m not “allergic” per se, to anything, I know certain foods still cause me to flare up. A bowl of ice cream, or Chinese food, or spaghetti and sauce, will have me hurting like no tomorrow. For now, I’m continuing on my anti-inflammatory diet as well as possible, until I feel better and can add some of the other foods in to see how they affect.

Starvin’ Marvin’

I say as well as possible, because now that I’m on the steroids, I’m STARVING! Ugh. I’ve gained 8 lbs in the last month. I’m trying very hard not to eat too much, but it’s hard when you feel like you can’t help yourself. Must try harder. Hopefully with next update, I can report a loss. After my shot, I hope to begin walking in the evenings again. Let’s hope I’m able to.

So, I think I’m caught up!! Now that I’m better, I will try to update more regularly.

Take of yourselves!!

Liz

Just because I’m losing…doesn’t mean I’ve lost

I’ve been returning time and again to that line from the Coldplay song “Lost”. Since last update, I have still been in the midst of a massive flare up and I can tell you, it’s not fun. My feet and ankles are inflamed to the point that I’m having a very hard time walking. On top of that, because I’ve been trying to relieve some of the pressure off my feet, my hips and gluts get really sore. I’ve tried everything to get over this, but so far, no luck. I have two more tries, then I’ll probably end up having to change my medication, and I’m not looking forward to that either, because the transition period between one medication and the next can get really ugly. And I’ll be taking something even stronger to try and kill my immune system. Not exactly the type of thing somebody looks forward to. Sigh.

A few weeks after this latest flare up started, I called my doctor, and he prescribed a Prednisone pack. I took the dang thing for ten days, struggling not to eat myself out of house and home, because steroids make you HUNGRY. I’m pleased to say I lost a couple of pounds while on it, but it didn’t bring any relief. During this time, I had gone out of town to visit my mother for Mother’s day, and I was so miserable there, and in so much pain, I knew I would have to do what I didn’t want to do.

When I returned, I broke down and went had a colonic. I was fighting it with everything I have, but by then, I was beginning to get desperate. Again, it didn’t help. Now what?

Called my doctor again, I need HELP! He had me come in for a corticosteroid shot. I’ve had one before, and so I knew that it doesn’t help me much, but that was the only other option he had given me. So, I had it. And after four days, still no relief.

By now, I’ve had a plethora of pity parties (It’s my party and I’ll cry if I want to), I’m having a hard time focusing, and being social. All I do is whine and complain to my friends, and I’m afraid they’re getting sick of hearing about “poor me”. I’m getting ready to just throw in the towel. It’s taking all I’ve got to get through the day.

Monday, my doctor prescribed a different steroid pack that had helped me earlier in the year. I’ve just finished that one, and I’m sad to report…no luck. First day was grand, but now all the aches, stiffness, and swollen joints are returning.

I also started the detox last week. I’m on day seven of the MV’s detox, and sad to say, still no relief. My body is definitely going through something. As hard as I’m fighting to tame this beast, it just won’t give in. My immune system is hella strong, and while normally that would be a good thing, it’s not so good in my case. I’ll see it through to its end (tomorrow I can start adding solid food back in, and I’m SO HUNGRY), and then see where I stand at that point. I’ll probably also get another colonic soon.

Lastly, I had a food allergy panel done at the beginning of last week. I’m still waiting for the results. Once I get them, I can see if I’m eating something that’s exacerbating the symptoms.

Jeez Louise!! Now you know why I haven’t updated the blog. I’m too busy fighting this dang thing. I may be losing, but I haven’t lost yet. Even after all this, I still have a little bit of fight left in me. (words of encouragement would be VERY welcome right about now)

Take care of yourselves!

Liz

To put things in perspective….

It’s pretty sad when the joints in your hands and fingers are so inflamed and painful, that while you’re styling your hair in the morning, you don’t realize you’re holding on to the barrel of a 300º curling iron, until you let go.  Nice.  Yes, that’s the kind of day I’m having.  At least now the burns hurt more than the pain in my joints, so I guess it’s providing some relief? 

 
Massive update coming soon…stay tuned.

Note to self…

Okay, so you had a setback.  You’re only human. I know that you feel bad sometimes when everyone around you is eating yummy stuff, and you can’t.  I feel bad for you, I do.  But that does NOT mean you should give in and have cake three days in a row.  Or eat flavored tortilla chips (brand name excluded), and barbecue when there is a food day at work.  One serving here or there isn’t going to break you. But, as is apparent by how you’ve felt for the last few days, multiple servings of restricted foods, over the course of several days is going to take you down.  It will.  You need to realize that, and learn to live with it.  Period.

You can do this.  You are strong enough!  You can kick this disease’s butt. You’ve been feeling so wonderful over the last several weeks. I know that’s why you felt that you could have a little bit of bad food and not suffer for it.  You couldn’t, though, could you?  Even when you first started feeling those little twinges in your joints, you still had more flavored tortilla chips.  Now look what happened…you could barely walk your feet hurt so badly.

Don’t beat yourself up for messing up.  It happened, and it will probably happen again. I, more than anyone, know exactly what you go through. This is why I’m writing you this note.  If you slip up and have a serving of something restricted, stop right there!  Don’t think that because you don’t hurt, you can keep eating that way, because you can’t.  Just don’t do it.  Take my word for it, okay?

Please don’t make me say “I told you so”.

Love,

Me

Bring ‘em on….

Since I’ve been feeling well for the last couple of weeks, I figure now would be a good time to try and reintroduce some foods into my diet.  Citrus was one of the food groups that I had excluded, so I had an orange yesterday, and suffered no effects.  Nice!  I’ll wait another few days, and have some more citrus.  If I have no symptoms, it’ll be safe to add citrus back into my diet.

One of my favorite foods and the one that has been sorely missed is tomato. I haven’t been overly strict excluding it from my diet; I have had small quantities of it over the past nine weeks, but only in very small quantities. It’s time to see if a bowl of chili or spaghetti is going to kick my butt.  I’m a little scared, I really don’t want to hurt again.  This is the only way I’ll know if tomato is a trigger, though, so I have to do it.

I’m going in guys….wish me luck.

Be kind to me, my friends.

Success

The inflammation has broken!  YES!  Shortly after the last update, I started to feel better.  The next day was much better, and now I’ve been completely pain free for almost a week.  What a relief it’s been to go without pain for multiple days.  I’m still doing really well on the exclusion diet, though I have eaten a few foods that aren’t on the diet without any effects.  For the most part, I’m still 99% on the diet, and feeling awesome.

I’ve been really worried about eating out, especially after eating Mexican food two weeks ago, and paying for it.  However, I went out with a coworker for her birthday to Rubios’s and had a wrap.  Rubio’s is one of my all time favorite places to eat, so I was really concerned I was going to feel the effects afterwards, but I didn’t.  Just to make sure, I went back several days later and ate there again.  🙂   Again, I had no problems.  I’m very happy to have discovered that I can at least eat there with no issues.  Yes!

At last update, I was more than a little sad that I wouldn’t be doing the Arthritis Walk this May, due to another commitment.  After a Facebook comment left by my sister in law, I went looking at the arthritis walk website and looked up dates in California.  Sure enough, I found one that we can do.  So, it’s back on!  Not only do I get to participate in the walk, but now I get to walk it on the beach, and with my favorite munchkins (nieces and nephew).  It doesn’t get much better than that.

All in all, it’s been a great week. I’m happy to finally report some good news.

Update

I’d like to say I’m doing well with my exclusion diet. It’s not that I’m eating improperly; it’s just that I’m still not feeling all that well. I ate some Mexican food last Friday night, and paid heavily for it all weekend. Now, I’m worried about reintroducing any other foods into my diet, as I fear I’ll hurt like I did last weekend. I’m still unsure if it was the fried taco, the salsa, or the rice that did it. Perhaps it was all three. It will be a few weeks before I forget what I just suffered through, and then I’ll go back. Next time I’ll eliminate the fried food and see if that was the trigger.

I still have some inflammation that won’t seem to go away. I was doing really well after the last steroid pack, but then the pain came back, and I’m still trying to deal with it. Sigh. This may require some extreme measures. I’m considering getting a colonic. Or rather, I should say, I’m dreading getting a colonic. Hopefully I will work up the courage to do so. A half an hour of discomfort should be easy to accept when the outcome may be weeks with no pain, but I still dread going. Pep talks would be most welcome.

I was really, REALLY looking forward to doing the Arthritis Walk in May. Now, something else has come up, and I won’t be able to do the walk. I’m so disappointed. I feel as if I’m letting everyone else down, by not doing it. I’m sure nobody really cares, and I haven’t even signed up, so why do I feel like such a slacker? Sigh. I’m putting undue stress on myself; I need to just not worry about it. I vow that I WILL do the next walk. I will. I have to, in order to feel like I’m reaching out to others, and doing something that will help others with this same condition.  For now, I will find someone to sponsor, it’s the very least I can do.

More later…

Crawling out from under my rock…

I’ve had RA for seven years.  Seven years.  And I’m just now realizing I don’t know all that much about it.  How could I have been so ignorant for all this time?  I mentioned earlier that I had done the detox, and that it had helped my symptoms tremendously.  After that point, I had done some research on diet, and have tried to avoid foods that would cause flare ups, though I have never been as determined as I am now.  Other than that, I haven’t really delved too much into it.

It’s amazing how many resources are out there.  There are wonderful blogs that are beautifully written by people who have RA, people who suffer much more severe symptoms than I do.  When I read their stories, I realize that as bad as I think I have it, it could be so much worse.  There are forums dedicated specifically to RA, with many members who provide advice, offer support, and talk about their experiences with medications.  There are advocacy summits in Washington DC,  an arthritis introspective here in Phoenix , and fund raising walks (which I will be participating in this year).  All of this and more, out there on the internet, in the world, and I’ve been aware of none of it.  I’ve been too busy hiding under my rock, suffering in silence, basically accepting the hand that fate decided to deal for me.

I started this blog with the goal to help others learn about this disease; hopefully provide some tidbit of information that might help people like me fight back.  But I have SO much learning of my own to do.  No more hiding under my rock, and going along with whatever happens.  It’s time to really study all that there is to know about RA, and equip myself to the best of my knowledge to kick its ugly little butt to the curb.

Watch out, RA.   I am determined, and I will win this war.

I miss food…but not really

The last six months have been rough; I’m not going to lie.  It seems as if my symptoms have been progressing, or that my medication has become less effective.  I have a few knuckles that have started twisting, and my hands/hips/knees/ankles/feet hurt quite often.  Knowing that diet has a lot of influence on whether I experience inflammation or not, I did some research and started an ‘Elimination diet’ last month.

Back story…A couple of years ago, a co-worker of mine heard about The Martha’s Vineyard Detox  on Oprah.  She wanted to give it a try, and convinced me and another co-worker to join her.  I went into it with the goal to detoxify my digestive system.  What I didn’t know at the time was that it would rid my body of all my RA symptoms for 8 weeks!  8 WEEKS PEOPLE!  I wasn’t even taking my meds.  It was miraculous.  I knew then that,  despite what some doctors may say, what my own doctor says, diet has a huge influence on RA, at least it does in my case. 

The problem with that particular detox is that it is hard.  Really hard.  It is recommended you only do it once a year for the full detox, or quarterly for the one week detox. You eat no solid food the entire time, only drinks,  juices and soups, made entirely of vegetables, very little fruit, and nothing else.  Everything has to be blended into a liquid.  You drink distilled water and decaf teas made with the distilled water, and take digestive cleansing vitamins, amongst a variety of other supplements.   The worst part of the entire detox is the colonics.  Yes, colonics.  If you don’t know what that is, look it up.  There are other steps to doing the detox, though these are the main components.  I can do the detox a couple of times a year, at most, and there are some aspects of it that are quite unpleasant, and expensive.  Of course, being pain free is priceless to me, so that doesn’t really deter me.  The problem, though, is that once I go back to eating the good old American diet, I start hurting again.

Using B&N and the internet for research, I realized that there are quite a few anti-inflammatory diets out there.  There are common foods that are eliminated from your diet in all of them, and each diet has unique foods that it feels cause inflammation.  In my quest to become pain free, I decided to eliminate ALL of the foods I found on the research I did.  How hard can that be, you ask?   Here are the foods that have been eliminated from my diet since the first week of February.

Wheat – and all processed foods made with wheat, and/or flour

Dairy

Sugar

Coffee 

Fried foods

All oils besides canola and olive

Citrus

Red meat – or choose only very lean cuts of beef or pork, of which I am doing neither

Nightshades – potatoes, tomatoes, chile peppers, eggplant, bell peppers

That last one is tough, and I haven’t been very strict about it, because I’m Hispanic, and how do you eat Mexican food without tomatoes and chile (or cheese for that matter)?   It’s very hard, let me tell you.

The goal is avoid these foods for a month or so, then slowly begin to incorporate them back into your diet, to see if they cause any inflammation.  My problem is that I was still feeling very bad after I stopped eating them.  Worse actually.  I may have been in a healing crisis, which the MV detox describes as the stage of  ill-feeling when your body begins to rid itself of toxic residues that have built up in your system, and I couldn’t get out of it.  I finally had my doctor prescribe a steroid pack; to break the state of inflammation my body seemed to be stuck in.  I’m now feeling much better, and somewhat pain free at this point.  

I feel like it’s going to be very hard to add any of these foods back in to see if they trigger a response.  Only a few more weeks, and we’ll begin the exercise.  Until then, I’m enjoying the mostly pain free days (and nights), losing weight with absolutely no effort (12 lbs so far since this started), and even enjoying relief from allergies.  I guess there is something to be said about eating right.  If only French fries were healthy for you.  Sigh. 

I’ll keep you posted on my progress. 

Love to all,

Liz