A Diagnosis, I think

I met with the Rheumatologist at the Mayo Clinic.  After looking at all of the tests that are in so far, and speaking with the Radiologist, he believes that I have Rheumatoid Arthritis.  A very a-typical case.  Which may be why no one has been able to put a definitive name on it.  All of my blood work has shown up negative for Rheumatoid Factor, and nothing about my joint effusion is symmetrical, but everything else points to R.A.

He spoke with the orthopedic specialist that saw me last week, and they agreed that a system wide infection, as was first suspected, is unlikely.

I have a meeting scheduled with a highly respected local Rheumatologist on Friday, and I’ll be going over everything with my family doctor on Thursday.  I so completely rely on his advice.  I know he’s going to be steering me in the right direction as far as nutrition during treatment.

I fear that ChocoVine may have to be dead to me.  Because of drug interaction concerns, Fiddledaddy wouldn’t let me have any this weekend.  A FINE TIME TO QUIT DRINKING, WHILE TRAPPED IN A HOTEL ROOM WITH 5 PEOPLE.  SOMEBODY DID NOT THINK THAT ALL THE WAY THROUGH.

I’m going to be starting on Methotrexate (low dose chemo drug), with a side of Folic Acid.  I also got a prescription for Pennsaid, which is a topical treatment for my knee.

We came home early because Papa Bear’s bed was too soft, and Baby Bear’s bed made her cry because the springs were sticking her in the back, and Mama Bear doesn’t really care where she is as long as her pain killers are close at hand.

And all of the specialists I spoke to over the last week have assured me that the dosages of pain meds that I’m taking are safe.  Good dang thing.

On our way home, after an exhausting day which began at 5 in the morning, and a 3 plus hour drive, we stopped at the pharmacy to have my prescriptions filled.  Since it’s a drive through, a sign is posted asking that you turn your car off during the transaction.  Well.  We decided to wait for everything to be filled, late at night, in the heat, and chat with the pharmacist about Methotrexate and such.  This took about 20 mind numbing minutes.

From the back of the van, a sleepy 8 year old pops up, “Where are we?”

Wherein we hear the 5 year old answer, “We’re in hell.”

Stunned silence.

Then Fiddledaddy turns to him, “What did you say.”

A very guilty looking Jensen covers quickly, “I said I love God.”

Attempting to stifle laughter, Fiddledaddy gave him a mini-lecture on lying and hell.  Not necessarily in that order.

I have a nice long road ahead of me.  I don’t know what I’m feeling.  I would really rather have been diagnosed with something curable.  Like immediately.  But life doesn’t always work that way.

I know a few of you guys have mentioned to me that you have R.A.  Please let me know about your treatment plan.  And if you’re more comfortable using the “contact me” page at the top under my header, please do!

The real kick in the seat of the panty hose to me today was the knowledge that the two knee surgeries that my family suffered through with me, were very likely unnecessary.

Moving on.  I’ll be staying focused on the journey ahead.  And I’ve no doubt that God has a good deal to teach me through this.  Thank you all again for your prayers.  I could absolutely feel them.

September 8, 2010

35 Responses to A Diagnosis, I think

  • I don’t have RA, but I do have an arthritis condition that has been reasonably well controlled with Celebrex and swimming. I love the blog, The Seated View (http://theseatedview.blogspot.com/) for her perspective on living with RA. The writer’s condition is more severe than my own, but I find her perspective both realistic and inspiring without being insipid. She also writes for HealthCentral about living with RA.

  • My mom had Lupus which is in the RA family. I remember she was on Methotrexate for years.

    The important thing is that you have a diagnosis and can start working on a treatment plan. Just keep in mind it can take a while playing with various meds to get the right treatment plan working for you.

  • My very limited understanding is that atypical RA has a generally good outcome from treatment and isn’t necessarily lifelong. What a downer that you believe the surgeries were un-necessary.

    As I was reading about you switching off the car late at night I was afraid you were going to say it wouldn’t start and you had hours longer with AAA etc!

  • I am grateful that with a diagnosis and the excellent medical specialists on your team that now you can move forward with some knowns instead of so many unknowns. Genetic conditions of immune deficiency and autoimmune disorders pockmark my entire family. At every point we have remembered that knowledge is power for our medical decisions. As Christians, we have stood fast in the knowledge that His grace alone is sufficient. These things I will pray for you as well.

  • DeeDee, I’m so glad you know what’s going on now. You are always in my prayers and your sweet family. I’m so glad Jensen loves God. (I love what kids come up with!)
    Have a good day…..

  • I am so happy to hear you have a diagnosis and a treatment plan. I’m praying that by this time next month, I will be able to share the same with you. You and your family are in my prayers….

  • It’s good to have a name to put with all you are feeling. Hoping your treatment plan provides some relief. And so happy there are little ones in your life to add some humor.

  • Oh goodness, Jensen’s comment made me spew granola and milk all over my computer! Praying for you.

  • Glad to hear you have a diagnosis! My DH has psoriasis, which is an auto-immune problem just like RA. He started taking Methotrexate about three years ago. He had to get off for a while because his liver profile went wacky, but he’s on other stuff now, with the Metho once/week. Just be *sure* to stay on top of your liver profiles on a regular basis. I hope it works well for you! 🙂

  • My daughter has R.A. and dermatomyositis. She was first diagnosed in 1996 at the age of 21. It took a good long while for her rheumatologists to come up with her diagnosis, too. And like Pam said, because her R.A. was atypical, she’s had an easier time with it, praise God. But it hasn’t gone away and she’s not been given any hope that it will be, but if she can manage to continue to be able to lead a normal life (not that having four kiddos 8 y.o. and younger and homeschooling would be considered normal LOL) in spite of her diagnosis, we’ll be thankful.

    Praying that your doctors will be able to find a treatment course that will provide relief and that you will be able to resume your normal routines/activities.

  • I am so glad you have answers. A good friend has RA that is in remission. I would give her two shots once a month for the RA and she would take Methotrexate pills. It took a little over year for her to go into remission but she is doing GREAT! Praying for the right course of action for you and knowledge for doctors to treating you. On a side note…Kids say the darnedest things.

  • My first rheumatologist was a whacko and considered me a hypochondriac because I didn’t fit the exact clinical presentation of RA. I switched to another doctor who did a full body nuclear scan and found proof of exactly what I was complaining about so I could finally get medication that worked. It’s amazing the difference a good doctor can make and it’s always good to have a diagnosis and a plan of attack.

  • Love to you, DeeDee. Reading this makes my heart squeeze up.

  • Oh my gosh! I may very well get fired after reading this post. We’re not supposed to read blogs at work, but I just had to know how you were doing, so I decided to check in. I was laughing so hard, the GOL (Grumpy Old Lady) in the office next to me demanded to know “what the HELL is so funny over there?” I’m sure she’s typing a note to my boss as I type this comment. I’m a computer programmer with no nursing experience, but if I get fired can I come be your personal nurse? I’m a pretty good tutor. I could take over your homeschooling? Anything???

    Seriously, I’m glad you got a diagnosis. It’s hard to hear but much better than not knowing. I’ll be praying for you through your treatment and checking in daily… although probably not at work.

  • A funny to go along with my prayers for you. One evening whil I was at work, my husband calls to tell me something, but he can hardly speak due to laughing so hard. It turns out he was watching one of the Star Wars movies with our girls for the first time and had a strange experience. JarJar Binks appears on screen and my husband hears this sort of deep voice say in a clearly shocked way, “What the hell was that!”. He jumped up to look out the window, thinking he heard a stranger talking through it. Turns out it was our tiny, itsy bitsy, petite 7 yr old daughter who was sitting sort of behind him. Her voice is kind of low and the window was open, but he wouldn’t have guessed it was her until he asked. He asked her to repeat what she said, she said it again the same way. He said he nearly peed his pants laughing. No one around her curses or would use a phrase like that; we don’t know where it came from. He did say he thought it was an entirely appropriate use of the phrase given the situation. It still makes me giggle thinking of it.

    I hope this diagnosis and treatment plan work and that you get much relief soon!

  • Well my dear…sigh. Wishing I could stop by with some fabulous coffee and homemade cinnamon rolls. We’d chat and eat and pray. I’d try to make you laugh. I’d hug you gently. I’d cry some, too.

    Praying now.

  • I would say that Jensen takes after his mama! It is a wonder Fiddledaddy was able to stifle his laughter.

    Glad to hear you got a diagnosis, I just wish it was curable. I know God will continue to be with you tho and I hope what others have said about remission etc hold true for you.

    BTW, are you going to send this info to the doctor who tried to tell you you were just emotional? It would be hard for me to resist!

    • Connie,
      I will send an e-mail to him soon. But I’m going to try not to word it as tersely as the one composed in my head. 😉 But you just never know how feisty I’ll be feeling on that day.

  • Bless your heart. I’ll pray for you. A friend of my mom’s was diagnosed with RA, and decided to become a vegan, in addition to her medical treatment. Her doc is astounded at her improvement. I’m not so sure I could do it, but this woman was miserable and apparently it was worth it to her. Just something to be aware of. God bless you.

    Nate’s Mom

    • I’ve heard that diet can radically alter the outcome of RA. And as hard as it would be, I’m totally open to it. 🙂

  • When I saw these aprons (http://www.lakeside.com/Aprons-With-Attitudes/details.asp?I=HYA&Ntt=aprons&N=36&Nao=0&R=897488029HYA4) the one called “Favorite Kitchen Utensil” reminded me of you. Lol!

    Glad that you are getting some answers. Praying for more answers and healing!

  • I’m glad you’re home and have a diagnosis to work with. You’re in my thoughts.

    And that Jensen? He is a scream!

  • I love your son. Seemed to sum up pretty neatly what all had been happening. Thanks for sharing all of this while going through so much.

  • I bet it was hard not to laugh when he said you were in Hell. LOL

    Sorry for your diagnosis, but at least you got some answers and can begin making things better.

    Hugs,
    Kat

  • Its always a relief to get a name to an ailment but now the battle begins, Hoping the meds work for you.

  • Oh my goodness!!! 2 surgeries for no reason…that’s just crazy! Praying that you find a treatment plan that works quickly and effectively.

    And Jensen…well, God knew you’d need the comic relief! What a funny story!!

  • Oh man! I was hoping for something quick and easy too.

    I guffawed loudly at Jensen’s statement.

  • I am sorry that you have RA but so glad that at least now you have a name for it. So glad that you were proactive and found the right team to give you answers. And BTW, I just LOVE Jensen (:

  • I think I would have died right then and there if I found out the TWO surgeries were not really needed. Ugh. I’m so sorry for you, but hopeful you are on the mend now that you have a plan. : ) Looking forward to hearing more of how God is working through this trial.

  • Wow. I think you should totally let your Doc have it. Or sign my name to it as a concern person for your health and you can claim innocence. I’ll totally own up to be emotional. 🙂

    Jensen sounds way too much like me. Does this mean we’re related??

    Praying for the whole family. Kids learn good lessons of pulling together as a family in times like this that you can’t get from a book. Hugs sweetie!

  • Yup, I’m with the others. That kick in the pantyhose deserves your medical bills to be forwarded (with a copy of your new diagnosis, of course) to said doctor of quackery.
    I am rediculously angry at whichever doctor put you and your family through such torture as two unnecessary knee surgeries.
    Hell, indeed.
    Well said, Jensen. Well said.

    • I agree with Diane. That makes me so angry! I have missed a lot in the past 2 weeks of my blog-reading hiatus, apparently!!! I am so sorry about this, but hopefully once you get your vitamin D and diet on track, along with your meds kicking in, it will improve. I will keep praying for you, Dee Dee.

      Also, I have to say that I would have peed in my pants laughing at Jensen. Silently, of course. 🙂

  • DeeDee, I mentioned to Tom that I think Brenda Ballard has this type of arthritis.

    Know that you are prayed for and thought of – may He ease the pain and provide miraculous recover.

    Nan

  • Dee Dee, So sorry that the 2 surgeries were not needed. That really does bite! BUT you do have a plan to move forwarded from here. I have OA which is very different but has problems as well. Keep moving is very important. Prayers are still going up for you as you adjust to the new life.

  • I have RA. Came on suddenly after giving birth to my 8th child in 2008. I am on plaquinel. I also take prednisone as needed.

    You may want to check out @rawarrior on twitter. She also has a blog. Lots of info there about a variety of treatment plans and such.