My Dr. Said What?!

I still want to get to everything I have done thus far in battling RA. But right now, I REALLY have to get something off my chest. In November of 2009, my rheumatologist (who may not remain anonymous for long in my blog!) prescribed me a round of prednisone. My body got very mad about this and I could barely walk as a result of taking it. I know that steroids are sometimes a gift from above and it made no scientific sense that I felt worse off after taking them. But I DID! This was the first pharmaceutical approach for me since my diagnosis. I had previously tried a steroid injection in my thumb, which didn’t work and hurt like crazy! So, once I finished the entire round of prednisone and felt a LOT worse off than before, I called to set up an appointment with my Dr., was told he was out of town, so I asked for another Dr. in the practice and told the gal on the phone that I REALLY needed to see someone. I could barely walk. The joints in my toes were crying in pain. I saw the other Dr.–who by the way turned out to be much better than the Dr. I was currently a patient of because he was a lot more thorough. He told me I had inflammation all over my body and should consider starting methotrexate, a low daily dose of prednisone and a biologic as soon as possible. At the same visit, I asked him if he could please fill out paperwork for me for a handicap placard. As many of you know, this is a defining moment and it takes humility and a hard swallow of reality to take this step. But I felt desperate. The thought of walking giant grocery store aisles, let alone getting from my car in the parking lot to the store’s sliding doors is overwhelming. I can’t do it anymore. And if I had to, it would be with a tremendous amount of pain. The Dr. didn’t bat an eyelash and said he would be happy to sign it–but he said I had to smile for him. He’s one of those kinds of doctors. He wrote on the form that I had moderate to severe RA and checked the box for a temporary placard. I have to be honest and tell you that the fact that he checked “temporary” was a relief because at this point I was pretty gung ho about kicking this illness to the curb. So, I thought–ok, I have until May 2010….

So where am I now?

I have since tried a shot of depo medrol in the arm. This helped slightly. But I knew it wore off promptly after two and a half weeks because the pain came screaming back. Not quietly, but loudly!! And because my body was so angry about the steroid injection, it decided to attack a new finger with a vengeance. This finger is still swollen and on fire. Overall, some days are better than others. And that is why I find such solace in the words of other bloggers. You tell the stories of why autoimmune diseases are so misunderstood and difficult to deal with. To the world, I appear fine. I don’t look sick. I am on my feet. I am in great shape. Despite my illness, I feel like I am in the best shape of my life. But I am in chronic pain. I am not due for another appointment until June and my handicap placard expires this month and well, walking still really hurts on most days. I only used the placard when I really needed it. And it was truly the difference between being able to go to functions at my children’s school and being able to make it across the giant parking lot at church–among many others places. So, I sent a fax to my Dr. with a note about how helpful the placard had been and how grateful I would be if he would please sign the form so that I could renew it. I also included the previous form that the other Dr. had filled out so he could see his notes. It took over a week and several calls to the Dr. office to get the fax into my Dr.’s hands. I finally received a call from his nurse last Thursday. She left a message on my machine that went something like this– “Dr. **** doesn’t feel that you need the handicap placard and isn’t going to sign the form. If you have any questions, you can call back.”

My Dr. said what?!  So many emotions surfaced inside of me…

And then I cried. And then a lot of ugly four letter words sprung to my mind. I still feel slightly numb and dumbfounded about his decision.

What do I do now?

For starters, I have an appointment to see my podiatrist tomorrow. I am going to explain my situation to him and go from there. He has not seen my feet in a long time. The last time I saw him, I was having painful feet, but still didn’t have a diagnosis. Now I damage to my toes to show him. But then what? Do I keep my current rheumatologist and have a “come to Jesus talk” with him about my pain?! Is he punishing me because I won’t start the medications he has been wanting to put me on? I am really curious about why he has done this. But do I seriously have to pay a $40 copay just to find out?! Do I try to get in to see the “nice” rheumatologist? I told him I wanted him to be my Dr. when I saw him and he squished up his face and said it would be tricky (office politics, no doubt). But said he would talk with my Dr.

In the meantime…

I pray for the wisdom to make the right decision and welcome the insights of others.

(Also, in the meantime…please be patient with me as I navigate my way through WordPress. I am new to this land and there is much I must learn and much I want to do.) Bravo to the bloggers that I first stumbled upon and have learned so much from and identified with so much. You guys are like rock stars! : ) Pollyanna Penquin was the first one I stumbled upon in a search about something RA related, I’m sure. Then I found Remicade Dream, RA Guy, and RA Superbitch. Thank you for the dedication you have to your blogs.  You are moving mountains!

Advertisements

16 thoughts on “My Dr. Said What?!

  1. Grrr! Doctors like that give the rest a bad name. I’d definitely be checking out your other options for Rheumatologists on your insurance plan and in your area. I don’t blog, but a blog that has a ton of useful information and encouragement, which might be helpful in your circumstance, is http://rawarrior.com/. I suggest you start with RA101 from the top menu.

    It sounds like you are already trying to avoid steroids as much possible, and I’m sure you’ve read some of the nasty havoc they can wreak on your body long term, like osteoporosis. Might I add still another caution of which my retinal specialist just made me aware. RA can attack the eyes in various ways. I’m currently dealing with that, and during the eye exams, the ophthalmologist discovered I am developing cataracts in both eyes. He told me that this can be precipitated and accelerated by steroid usage, and recommended to my rheumatologist that I not be given them except in emergencies. Has your doctor done a bone density scan?

    I was also diagnosed when in my 30s with 4 kids, but thankfully, mine were older, so I didn’t have to face the premature weaning issues. My kids were all breast babies, and I understand the determination to breastfeed as long as possible–the heartbreak at the thought of weaning early, but I’m concerned that doing so when you are facing what appears to be rapid onset and ravaging form of RA might not be worth the price. The bone erosions and crippling damage you are experiencing are irreversible, and the longer they continue, the more they will affect your long-term ability to care for your sweet baby in other ways you would hope to do. Unfortunately, the available treatments come with a pricetag also, not just financially, by physically and emotional. Some of the side effects are daunting at first, but without these treatments, your likelihood of entering remission isn’t good. The more recent research indicates that for the best possible prognosis, your docs should treat you asap with a DMARD and biologic combo.

    My heart goes out to you, and my prayers will be with you and your precious family.

    Blessings,

    Sunny

    • Sunny,

      You are the first person that I’ve connected with online about this crazy disease and I thank God for you. I knew God would give me a word or two through this blog. Thank you, sister, for taking the time to read my story and share your insights. You made me cry this morning! But I have to also tell you that this morning was different for me. The best way I can describe it is that I felt a spark inside and to me, that means someone prayed for me. You too are in my prayers today.

      My podiatrist yesterday was wonderful. Compassionate and unhurried. He took the time to tell me what he has seen in his experience with patients with an RA diagnosis. And he carefully looked at my feet and graciously agreed to sign the form for a handicap placard. He said he could sign for a permanent one but was going to select temporary so I would continue to have my feet looked at. He knows my Dr. They used to share patients and office space. I shared my situation with him in detail and he believes that my Dr. chose not to sign the form because he wants me to get started with the medications. He said I should give him a second chance. I am on the fence right now. I would like some answers, he is very close and they have a nice infusion room–if it comes to that. : (

      Have a beautiful day!

      • I live in a remote rural area, so there aren’t any support groups near enough to attend. All of my doc visits are a couple hours away, which can be very daunting (also painful and exhausting, since I usually drive myself). Reading other people’s blogs online has been a true Godsend. I’ve discovered more and more that the public as a whole is very uninformed and unaware of this chronic disease when compared to many others. Degree of pain, damage, and severity can vary widely, also, so even other people with RA may not be facing what you are. Unfortunately, you seem to have a severe case.

        At this point, your rheumatologist is at least willing and advising you to use the best treatment options available early and hard to try to capture the best window of opportunity to put you into what level of remission is possible. I still think it was extreme of him to deny you the placard. People our age don’t generally ask for those unless we are desperate and in a lot of pain and discomfort. There is a certain sense of guilt and shame we feel, as if our handicap is a lesser one…sigh. Perhaps, however, the podiatrist is right–that doc may feel so strongly about your need for meds that he is trying to use tough love to get the point across, so to speak. I’ll be in prayer that God will guide you to make the right treatment choices for your family and future.

        Blessings,

        Sunny

      • Wow….

        Guess what, Sunny? I believe with all my heart that God brought you into my life. I don’t believe it was luck or an accident or fate. I believe it was the Hand of God. And I feel the same way, reading other’s blogs has been a Godsend!

        In Jesus Name.

        Now I need to wipe my tears away after reading your reply and say that it breaks my heart to hear that you have to drive hours to get treatment. I’ll be praying for you, Sunny. Because that just sounds awful. But God is working. And He is good all the time.

        I really value your thoughts in regard to my Dr. He is worth giving another chance. Just didn’t appreciate him playing hardball with me. It makes me feel like he doesn’t support what I am doing at all.

        Thank you for your prayers. They mean a lot to me. I believe very strongly that prayer is mighty powerful. He is mighty to save. You know? My husband’s men’s Bible study group is also praying and I can feel it this week.

  2. Welcome to the world of blogging. It will help you blow off some steam and meet others that are dealing with this diagnosis. What meds are you taking in addition to the prednisone? (By the way, Prednisone didn’t work for me either) Anyway, I’m sorry that your RA isn’t under control. I know so well the pain that you have experienced, but mine….for the most part is controlled. There is hope, especially when you have a rheumatologist that will work with you as a team member. After all, you are an expert on YOU. Hang in there and keep blogging!

  3. First, welcome to the blogosphere.

    I am not sure why your doctor prescribed prednisone alone but my doctor only prescribes it for flare-ups. The sooner you start a medication regime, the sooner you will start to feel better. Not right away, but gradually.

    That feeling of not being able to walk at the grocery store, to attend an important event for your children, the fears that go with it etc. – we have all gone through those emotions. They are normal and a part of living with chronic disease. They come and go, you are only human.

    You are correct in your emotions towards your doctor. None of them really understand our struggles unless they deal with it for themselves. Of course, at the same token, you have to be comfortable with your rheumatologist and feel that that person has your best interests at heart. I recently changed rheumatologists because I did not feel that my old rheumy did. Trial and error – that is what is like living with this disease. It doesn’t get easier, but we learn how to do with it better with time and practice. Hang in there.

  4. I just wanted to say helloand thank you so much for writing this blog. I feel like God sent you to write this just to encourage me! I was diagnosed with RA about 3 years ago now and am still battling with it every da but I fing the more I hand it over to God and allow Him to be in control the easier it is to cope with. I am still believing for my healing but in the mean time I choose to be as educated as possible about my illness.

    Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.
    Proverbs 3:5-6

    I will keep you in my prayers and look forward to reading your blog posts.

    God bless you xoxo

    • Hi Sarah,

      I’m so glad you felt encouraged! I also trust God with my healing. But I know that healing may not come until we get to Heaven. I have to be content with that because I ultimately trust that God has my best interest at heart and is Sovereign. And if I trust that He loves me and is Sovereign, than I don’t have to wonder why I have this disease or have my faith or character called into question. Living with pain has drawn me closer to Christ than I have ever been. So how can my illness be a bad thing? It’s just difficult sometimes on many levels because I am human. Thank you so much for your prayers. I pray that God continues to guide you and encourage you!

  5. I was recently diagnosed with RA and each and every day I keep hoping and praying my discomfort will subside.

    No, I didn’t want to take drugs for this, but it was something that I read on I believe RA Warrior that got my butt into gear. I read “the toxicity on the body of having untreated RA is worse than the medication therapy to treat it.

    After 2 years of undiagnosed and untreated RA, I have cervical neck involvement and joint damage in my shoulder. I have hand deformity and pseudocyst in my hips.

    I’ve been only on treatment for 2 months now and today I was prescribed the biologic drug to treat my severe RA.

    I wish you all the best with any decision you make regarding RA.

    • Hi Denise,

      I’m glad to hear that you finally have a diagnosis. Wow, prescribed biologic today. I pray it goes well for you. Do you feel any improvement from other treatment yet? I know that it can take a few months. I wish you all the best as well as you begin a plan of attack on RA. Thank you for your well wishes.

  6. I will start taking Enbrel tomorrow. I’m currently taking Methotrexate 15 mg subcutaneously once per week, prednisone 16 mg per day, and motrin as needed. To be honest, no I don’t feel better yet.

    But I’m remaining hopeful that the 2000 dollars I will spend tomorrow on Enbrel for four doses will help me. Then I will pursue reimbursement from my insurance company for 70 percent.

    One of the most difficult thing for me to wrap my head around is within three months of my disease symptoms I self-referred myself to a rheumatologist who despite being told I have three sisters with three different autoimmune diseases, he never did a ccp or ra test, despite my complaining of joint pain, dry eyes, and raynaud phenomenon.

    But his final diagnosis was no lupus or any other autoimmune disease.

    I’m hopeful to find peace with this because if I had been diagnosed sooner I wouldn’t be suffering so now. I can lose my career, my ability to care for myself, and my insurance from unemployment over his gross negligence.

    I wish you all the best with your decisions about your illness. I hope you feel better real soon.

    • Denise,

      Wow…tomorrow…
      I pray that things go well for you. I’m blown away by the amount of money these drugs are costing people. I shudder to think of the day when I have to do exactly what you are doing, sister. I hope the insurance process is as easy as possible for you. (HA!) But we can pray, right? Sounds to me like your Dr. is not being very thorough– to say the least! Seems like the consensus among many is that we have to be the advocates for our care. We have to be informed about our options and the tests and treatments available. Sounds like you certainly are informed. I thank God for the internet. Stay in touch and let me know how you are doing.

      • I hope you’re feeling better.

        The first rheumy I saw in 8/2008 was not very thorough, but my new rheumy is wonderful. In fact, my new rheumye admitted that in 8/2008 those were my first symptoms that were missed by the first rheumy. He also said it I had come to him in 8/2008 he would have done an RF and CCP and which would have identified by illness and altered the course of my disease. I have an appt to see a lawyer, because in essence I was denied care by the first rheumy and misdiagnosed, despite telling him about my family history and having clear symptoms of an autoimmune disease. I came to my diagnosis by a lab doctor who I spoke too about my swollen hands and it was him who said I needed a ccp test done. I had it done at his lab and it came back 300 times normal!

        So I started the Enbrel and I can see a distinct difference in the way I’m feeling. My pain has lessened and the inflammation in my knees is better. I was able to walk 3.5 miles yesterday.

        So today I’m going to pick up some light weights and do some yoga to see how it goes.

        Regarding the cost of the medication, it’s crazy expensive and my rheumy told me if I didn’t want to pay for the medication, I could be included in his research projects and get the medication for free. I opted to pay for it on my own and seek reimburse from my insurance company. I will fly back to my hometown Chicago in June and bring 6 months of medication back and then I only have to pay a 65 dollar a month copay. But never the less, I have to pay for a ticket to Chicago twice a year to bring back the medication.

        Someone said on New York Times Voices of RA, that there are worst chronic illnesses to have. But for me, this one is horrendous!

      • Denise,

        I am so happy to hear that you have experienced some relief! And were able to walk so much! Yay! I will live vicariously through you.

        I am the policy holder of my insurance policy. My husband and I are about to go through the process of trying (I say trying because now I have RA written all over my medical records) to switch carriers because my current carrier–Aetna–has increased our rates considerably if we want to renew policy. Looking at United now. I am praying that we will make the right choice with a carrier since I see pharmaceuticals in my future. Any words of wisdom? Would greatly appreciate. : ) I pray you are reimbursed in full by your insurance carrier. Wow!–you seeing an attorney is certainly holding your former Dr. accountable. It’s so frustrating sometimes to be our own Dr. and attempt to diagnose ourselves. Thank God for the wealth of knowledge and information on the internet. Just have to sift through some of the junk. I am so happy to hear that you have a good Dr. now. I still haven’t decided if I am going back to my current rheumatologist or will seek out an appt. with his partner.

        I’m working on a new post to update people with what is going on with me as of late. I’ve needed time to process new info. before posting.

        Thanks so much for letting me know how you are doing. Keep me posted! Blessings to you, Denise.

  7. Hey,

    I just stumbled upon your blog this evening. First, thank you so much for your mention of my blog. I’m so glad you like it. I’ve just been back at it again after taking a break. Now that you’ve navigated the world of RA and RA docs, you can see where my anger comes from? 😉

    Secondly, it sounds like you need a new rheumatologist and fast. The sad truth is that no rheumy is perfect. I think it has something to do with the fact that each day/all day, they must remain in the company of people in the worst kind of pain. It is almost as if they become immune to our horrific symptoms. Still, there has to be one better than your current one. The partner sounded promising!

    And I would definitely start pushing for a biologic. Usually, most docs will keep you on mtx for a bit, but will move on to adding a biologic pretty quickly after if the mtx alone doesn’t work. And I would even ask about something for pain. Sometimes they will give you something for pain in the beginning while they wait for the meds to take affect. If you are like me, and six years out, the meds. still haven’t taken effect, they will send you to pain mngmt. And that is something I would truly suggest you may want to persue in the future. It is the only thing that keeps me functioning. Its not that I’m a pill-popper in the least. In fact, I prefer patches and creams, but sometimes a pill is needed for the kind of pain we have.

    I wish you all the best. Please feel free to write directly if I can be of any more help. Oh, and I’m on facebook now!

    Keep me updated.
    -RA SB

    • Get out! I have to admit that it’s great to hear from you. You are the RA Superbitch, after all.

      Thanks so much for reading about my Dr. situation. (Jerk) One of these days I’ll forgive him. Aside from his major foul up, he’s really been a pleasant Dr. He is very young and new in the practice.

      I really appreciate your insight. Girl, six years is a LONG time to not see results. No one has ever told me about places for pain management. Thanks for mentioning. Good to know. I imagine I will have questions for you in the future.

      I’m really glad you’re back. I’ll be checking on you! With four boys, I’m having enough trouble finding time to blog. So, unfortunately, I won’t be joining you on Facebook. I’m not set up there.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s