Friday, August 30, 2013

My Diagnosis: Rheumatoid Arthritis

Warning - long post to follow...

I don't think I have ever been so happy to see a long weekend arrive as I am today.  It's been a long week.  Actually, it's been a long month.  As I mentioned in my NYC post, I received a phone call from my doctor, and the news was not great.  She gave me a preliminary diagnosis of Rheumatoid Arthritis (RA) and referred me to a Rheumatologist for further testing and a treatment plan.  The news left me reeling, to say the least, and I was very happy to have the constant company of Alli throughout the weekend.

I don't expect anyone to know what RA is - I knew very little about it until I started to research it after finding out that it was a potential explanation/diagnosis for why I have felt the way I have felt this spring/summer. To explain what it is, I am going to cite the words of Kelly, author of the site RA Warrior:  Rheumatoid Arthritis (RA) is "a systemic autoimmune disease which attacks primarily, but not solely, the joints. It is an incurable disease affecting the synovial tissues which surround joints and similar lining tissues of certain organs.  Through a very complex process, various kinds of immune cells attack and eventually destroy otherwise healthy tissues."

How I knew something was wrong... 

As anyone who has read this blog since April knows, I have been plagued by foot injuries, one which was diagnosed as a stress fracture, another which was diagnosed as a hairline fracture.  I accepted the first diagnosis, but the 2nd injury in my left foot just seem "off."  I had been doing very little and it just did not make sense that I would have another fracture so close to the first.

But that was only part of it.  As early as April, I had been feeling pain in some of my joints.  I dismissed it as first as my body's reaction to the amount of stress it was under due to CFA preparations, or I thought it was my body's way of adjusting to the boot.  But then the pain in my arms and hands got so bad, it was difficult to do things like put on clothes, pick up my suitcase, open jars, or take the cap off of my chap stick. I kept thinking - what is wrong with me or what have I done to cause all of this strange pain.  When I would get out of bed every morning, everything would hurt and I honestly felt like I was 80, not 32.

I saw a GP in late June as the pain in my arms was getting so bad, it was really getting hard to do day to day tasks, and she diagnosed it as a case of tendinitis and increased the dosage of the anit-inflammatory that I was on for my foot injury.  But the arm pain would not go away and eventually I had to discontinue the pilates sessions because the pain in my arms was too bad for me to do anything.  At this point I started to wonder what, if any, physical exercises I'd ever be able to do again.  While pilates is challenging, it's gentle, so if I couldn't do that, what would I ever be able to do to stay active/fit?

I think the real tell-tale sign was the swelling in various joints - the worst of which was the 3rd finger of my left hand.

This is what my hand looked like

This is what it should look like
This swelling, coupled with the 2nd fracture diagnosis, is what led me to see my doctor last week - that and the prodding of my mom who felt something was really wrong.

My diagnosis/prognosis...

I saw my rheumatologist yesterday and he confirmed the diagnosis by doing a physical examination of my joints, asking me a lot of questions, and reviewing my blood work (which showed abnormal levels for a couple of different labs).  He is very optimistic and feels we caught this early and that there is very little chance of any permanent disfigurement or deformity.  He sent me home with a bunch of literature to read so we can make a decision about how to treat this.  He recommended a drug that is actually used to treat some forms of cancer - I would just take it in a much, much lower dose so my side effect should be more tolerable than someone who is using it as a chemo-treatment for cancer.  There are a long list of side effects/risks that I know I need to take with a grain of salt, but it's still a scary decision for me.  I have talked to one person on this drug and she said it has been a miracle drug for her, so it was at least nice hearing one person's testimony in favor of this drug.

I won't bore you with the details of the appointment, but I will say that while I was happy with his thoroughness/amount of time he spent with me, I was very disappointed with his demeanor.  Maybe I expect too much when I expect a specialist to show some compassion.  I just felt like he was very dismissive of certain things and unwilling to talk at length about other things (like my multiple fractures - he did eventually acknowledge that RA may have caused some osteopenia, making me more susceptible to stress fractures.  Hopefully the bone density scan I am having next week sheds some light on this).  I have decided to get a 2nd opinion, not because I don't trust the treatment plan he is recommending, but because I need to establish care with a doctor that I feel comfortable talking to.  I am sure he sees many who have more advanced forms of this disease, so seeing someone young with an optimistic prognosis impacted the way he treated me.  But while he deals with it everything day and is probably a little bit "numb" to the brevity of the diagnosis, it's all new and overwhelming and scary for me, so an "I'm sorry you are dealing with this" or an acknowledgement that this is overwhelming would have helped.

How I am feeling...

Honestly, I feel cheated.  I feel like I have done all the right things - I exercised (prior to the fractures), I eat healthy, I don't smoke, I rarely drink.  But none of that seems to matter.

I feel scared.  I don't know how my body is going to react to the drug I ultimately choose to take.  I don't know when/if I will return to running, or how far I will be able to run  when I do return to running.

I feel like it's all too much when coupled with the other challenges I have faced this year.  I just wonder - when is the string of crappy things going to end?  I keep thinking it won't get worse, but then it does.  This year has just worn me out.  

But, I feel a little bit of a sense of relief because now I have an explanation for why I have felt so crappy all summer.  I have not told many people about the pain I have been feeling or the exhaustion I have experienced because I felt I had exhausted the patience of others when talking about all my foot issues.  I told a couple of people but mostly I would lie awake at night and wonder, "What is wrong with me?"  So having an explanation of it - and hope that the pain will go away eventually - is somewhat of a relief.  I just wish the explanation wasn't a chronic disease that I will have to manage for the rest of my life.

What I need...

People keep asking me what they can do, but since all but 2 of my close friends live far away, there isn't much I can ask for at this point besides your thoughts and prayers as I process this.  I do need friends/family to acknowledge that this is a big deal and accept that right now I can't be all "rah rah, they caught it early, everything is going to be fine."  I know eventually I will feel that way but right now, I am sort of grieving the fact that my life will be forever changed.  I am not going to give into these feelings of grief forever, but I will for awhile.

The last thing is that I need people to accept and respect decisions I make about how I go about treating this disease.  I am relying on the expert advice of specialist who live, eat, and breath RA every day.  I appreciate the research family and friends will do on my behalf and will look at things they are suggesting I do, but ultimately, I am going to rely on the advice of my Rheumatologist.  Right now, I am not open to holistic approaches to treating this disease.  I would prefer to start off with an aggressive treatment so I can get back to living a more normal, active lifestyle ASAP.  Once the disease is under control, I would be more open to seeing what the alternative treatments, but right now, I'm not there yet. 

With that, I will bring this novel of a recap to a close.  I want to emphasize that while I am pretty down/overwhelmed/frustrated, I do know I will be ok.  I have been encouraged by stories of others who are living with this disease and leading normal, active lives.  I hope that will be me soon. 

I'll close with a quote that my Aunt Betty embodied with the way she lived her life while battling cancer.  I am going to try to take a page from her book and try to adopt this approach to life as well.  Lord knows, 2013 and Charlotte have provided sufficient rain for me to dance in.
 

31 comments:

abbi said...

Sorry you are going through this. The second opinion on how to treat sounds like a good option, especially if you walked out of there with an unsure feeling. I can't say I know anything about RA myself but am hoping you will find the right path soon!

The Many Thoughts of a Reader said...

(((())) I am so sorry that this year has been so crappy for you. I hope you can find a specialist that will help YOU and support YOU and be all that you need. If you want to complain you know how to reach me! <3 you!

Lindsey Dunmyre said...

Ugh, I wish I could hug you. I'm so sorry you have yet another hurdle this year. I truly hope you find a doctor who can help you find peace with this, and a treatment that you can be comfortable with. My dad has a severe form of Arthritis (I can't remember what kind) and he's found a medicine that changed his life. I'll talk to him about it and let you know, so if it's something you're recommended, you can ask me about it!

missris said...

I am sending you virtual hugs today! I know this is all probably crazy and scary and overwhelming for you (and so far from your family and friends). I hope that you get a little bit of solace in at least having a diagnosis, but you're totally justified in feeling like "What next, is a piano going to fall on my head?" I'm still crossing my fingers that things are going to get better for you VERY SOON.

Jeanie said...

Hi, Lisa -- I'll reply more in-depth in email. For this, let me say that I have all the confidence that you will do the right things, that you will find the right doc to serve both your body and spirit and that you WILL find a way to adjust to this. It might not be tomorrow or the next day, but you are a woman of spirit, strength (I know, doesn't feel that way now) and wisdom. And you will learn how to work with this.

I'm so sorry it has to happen to you or to anyone. And especially this year. For a lot of reasons you know, I can relate. And because I can, I know that we all have inner reserves we can't begin to know how to tap until all of a sudden we do. You will.

Marlys said...

I am pleased that you are getting a second opinion and from someone who knows this doctor! That alwyas helps, and you do need a doctor with compassion and concern who will listen to you. That is so important in a chronic illness! It is hard to be so far away from you at this time, but I hope you feel the love and concern and prayers we are sending your way!

Leigh said...

So sorry to hear that you are having to go through this. I hope the second opinion helps that you are able to get started on a treatment plan asap. Keep your head up and sending you a big hugs!

Allison Nimlos said...

A couple of things:

1) Yes yes yes on getting a doctor who *gets* you and treats you the way you want to be treated. Not just physically but emotionally. I'm actually working on a story about this very topic and it is SO important. Good for you for realizing that early on in the process.

2) I know what it's like to feel cheated. You know I do. And while our two chronic, autoimmune diseases are totally different, they are painful and unfair. I wish I had some words of wisdom to make it go away, but really I just wanted to affirm that what you're feeling is totally normal. The good thing is that people with chronic illnesses are always doing amazing things, so this should be seen as a road block. Yes, it's an obstacle. But obstacles can be overcome with patience and practice. I know it sucks, though. I really really do.

Caroline said...

I'm really sorry, Lisa. This on top of everything else, you certainly did not need. Health issues are always so scary to deal with, especially when you're unfamiliar with your doctor. I have complete confidence that you will make the right decision for you! Praying you get better soon!

Redhead Running said...

I'm so glad you are taking your health in to your own hands and not settling for anything but the best care. So many people take the first opinion and never think they have the right to dig deeper or find someone they feel more comfortable with. I will be keeping you in my thoughts and prayers and hoping that this treatment is just what you need to get back on track. Sending big virtual hugs your way!

Carolina John said...

{{{hugs}}} it wouldn't surprise me at all if the RA caused inflammation that caused the stress fracture. An MD fb friend of mine has been warning me about that for weeks. I really hate that you are having to deal with this at all and you have our full support for whatever treatment options you choose.

Stephany said...

I think it is absolutely the right decision (not that my opinion matters, ha!) to seek out a second opinion and another doctor. You HAVE to be comfortable with your doctor and feel like your concerns will be met with compassion. So many people settle when it comes to doctors (I had a discussion about this just last night with some girlfriends!) and I think it's so important to continue trying out doctors until you find someone you're comfortable with. Your health is important!

All I can offer you is my hugs and my love and I know you'll pull through this. You are such a strong person to have dealt with everything 2013 has thrown at you and good god, 2014 better be YOUR YEAR, you know?!

The Boyers said...

http://shannonjoyheick.blogspot.com/2010/10/fridays-on-faith_29.html

Hi Lisa,
I don't know anything about RA, but a friend had Reactive Arthritis and went to a great dr. She talks about her journey in the link above. Hopefully this helps.

Becky said...

Ugh, so much crap you're dealing with! I'm happy you shared this so we can support you as a community as you go through it! xoxoxoxo

Linda said...

Oh girl. Thinking about you.

J said...

So sorry to hear this but I am so glad you finally have an explanation for everything that is going on. I have always been a person who doesn't like to take drugs but from my experience, sometimes you have to take them and they help and they make things better. Get a second opinion and do all you can to feel better about this decision - I know it will all work out the way it is supposed to and you will feel better!

Kelly (She Wears a Red Sox Cap) said...

Like you, I have also just been hoping things cannot possibly get worse for you and yet somehow they do. I'm going to continue to adapt this attitude and hope that a diagnosis is a step in the right direction for things to be going better. Hopefully the fact that you exercise and eat right are going to help you fight this in the best way possible- along with your doctor. I hope you find a doctor who is more supportive and can help you through this. We will all be here too :)

Alli said...

This post makes me so angry on your behalf.

qwerkyqook said...

We are here with you every step of the way-eventually every running step :) Love you.

Jolene - EverydayFoodie said...

Oh no girl :-( Sending virtual hugs your way. You've dealt with enough already!

Jamie and Missy said...

Dearest Lisa,
My heart was heavy reading this post. Know we are thinking of you and that you're loved by many.
The Zuels

Elizabeth said...

So sorry to hear it lady. Sounds like you are making some well-thought out choices and a second opinion is always warranted. Definitely glad you had a good trip to NY. Am thinking about you!

Amber said...

Thinking about you so much. I really hope you can find a doctor you are more comfortable with. I echo other comments who say that is SO important.

So much love is being sent your way. XO

melissa said...

My mom has had rheumatoid arthritis for as long as I've been alive so I'm quite well versed on this topic. I think your doctor likely offered you the same drug (or one of them) that she is on, the one that is like a mild version of chemo. She is on the max dosage, but luckily it's the exact right prescription for her and she feels no side effects. I don't know if your doctors explained this to you but when you're given the right medication and dosage for this, it shouldn't cause you discomfort or very much of anything except feeling better because it'll be attacking SOLELY the disease and no actual functioning part of you. It has made my mother's quality of life SO much better and often times I forget she even has RA.

Honestly, I think this can hit anyone at any time. The chances of my having it when I get older are very high because of my mother's diagnosis, so I feel you on this. I'm certainly more prepared than you probably were, but I know it's NOT fun. It's very, very manageable though, and honestly? My mom is still stronger and more agile than I am on most days. I'm not even exaggerating. You'll get through this, I believe in you! If you need anything, let me know <3

San said...

I am so sorry to hear about your diagnosis, Lisa. I totally understand that this is something that you have to process and you have every right to be angry/disappointed/scared/sad.... what have you.
I wish I could give you a hug right now.

A friend of mine just recently got potentially the same diagnosis. She's your age.

Abby said...

Sending you so many prayers and warm thoughts during this time. I support you in whichever decision you make, and I'm proud that you've made the decision to make this between you and your rheumatologist! (I'm also glad you're seeking a second opinion, just for the sake you need someone you can talk to)

Love you!

Lesli said...

I love that quote! Sending lots of virtual hugs & positive thoughts your way my friend. I know you have so many loving friends & family on your side and who are thinking of you. I too agree that it is good to get a second and even third opinion and it is super important to have someone you can talk to and who listens and answers questions and offers compassion--someone you can feel comfortable with. xoxo

Shoshanah said...

What a year 2013 is turning out to be. At least it's almost over though. I'm a little in disbelief of all this, but at least it must be a little settling to finally have an answer. Wishing you the best, and hopefully you're able to get this in control sooner rather than later!

Nilsa S. said...

I am late to reading this, but not late to hearing the news. You have definitely been tested this year on countless levels. And, while you might not yet know it, I can see how gracefully you have handled all of it. I am glad you finally have a reason for all the health setbacks you've experienced this year. You can now move forward - and while your future might not look the way you expected, I hope at some point you will truly believe that your future is bright. <>

Kyria @ Travel Spot said...

Everyone has pretty much said what I would also say...hugs and my thoughts are with you and I am hopeful that you will find some answers/solutions soon! I wish I were closer because I know that it's hard for you to deal with this period, but definitely to do it far from your friends and family is even more taxing, which is the last thing you need! I hope that your second opinion doctor has a better "bedside manner" than the first! Fingers crossed!

Natasha N. Leigh said...

My goodness, I'm late to this but I'm sorry about your diagnosis. I'm very aware of RA, though, because my mom has it. She was hit by a van over 15 years ago and was later diagnosed with it. By the grace of God, she hasn't been required to take anything for the symptoms itself but I would like for her to see a rheumatologist.

I can totally imagine how cheated you feel. My mom was a very active person. She walked a lot and the RA (combined with age) has definitely keeps her from doing it as much as she used to. RA changes a lot of things in an instant, on top of having an autoimmune disorder.

I don't know if you got a second opinion yet, but I did notice that you're taking meds for the pain. I'm going to keep you in my thoughts. I will also say that it's going to be okay. It may be a "one day at a time" situation, but everything's going to be alright. If you need anything from me, let me know.