My Life on Biologics – Journal Entry #2

Thursday, May 24, 2012-
I had energy today… more than I’ve had in a looooong time. I got a TON of housework and baking done… it was awesome! I still have pain and stiffness, but the pain in my lower spine isn’t as bad as yesterday.

Friday, May 25, 2012-
Totally overdid it yesterday and I’m paying for it today. I am soooooooo tired…

Had a doctor’s appointment this morning with a new MD I wanted to check out (just to have around if needed) and to get some shots my Rheumatologist asked me to get (TB test, T-dap booster). When the new MD came in to see me, she introduced herself, glanced at my chart, and then looked at me and said, “Well, even though you have lots of autoimmune stuff going on you look okay. You must be feeling great.”

Umm… really? If a friend said that to me I wouldn’t be offended. I know I appear to be healthy, but a doctor should know better and is assuming WAY too much to say that to a patient they are meeting for the first time (especially when the doctor has a whole list of my diseases right in front of her). Do I really have to prove to you that I’m sick? She never asked for any medical history, never asked when I was diagnosed, never asked my symptoms… Wouldn’t a doctor normally want to know all of that stuff?

Also during the appointment with the MD, she asked me if I ever thought about going out of state to see another doctor. I told her I had, and might consider it down the road if the Humira didn’t end up working. She said she used to work up in Fairbanks, AK, and shipped people down to Washington to see different rheumatologists all the time. Generally the rheumatologists did a bunch of tests, made a bunch of recommendations, and never were able to help the patient. I explained if I did go out of state to see someone else I’d want my doctor to call the out of town rheumatologist ahead of time, ask if they could help me, explain my medical history, what I’ve already had done, etc, and find out if the out-of-state rheumatologist thought they could help me before I even considered going. She told me I’d never find a doctor willing to do that for me and my insurance would never pay for it anyways.

So why did she bring it up in the first place if that’s what she thought???!!

First of all, I already have a doctor (my ND) willing to find an out-of-state doctor for me, because she is a true advocate for my health and is sincerely compassionate about my situation. Not only that, but she actually cares for her patients! Secondly, I’m not 100% positive, but I do think my insurance would pay for me to see and out-of-state specialist/rheumatologist as long as I have another doctors referral. Thankfully, we have excellent insurance.

I know I shouldn’t have let the doctor get to me, but she did. I left the clinic very emotional and upset. I’m not someone who cries very often, but I called my husband and shed a few tears. Dealing with the pain of a disease is difficult, but then you throw in all the emotional highs and lows (including lows from terrible doctors)… it is very much like a roller coaster. I won’t be seeing that doctor again.

Saturday, May 26, 2012-
I made the mistake of not taking my Tramadol (it’s a pain medication) last night. I thought I would be able to sleep without it. Not so much. I had a horrible night last night. My feet and hands were on fire, I was having night sweats, and woke up at least 15 times… I’m looking forward to taking my Tramadol tonight and getting a good night’s sleep (hopefully). A good friend of mine (who also has psoriatic arthritis) told me never to underestimate my pain. She was totally right.

My feet are really hurting, but on the bright side, I seem to have energy today. I was able to clean the kitchen, make some granola bars, and do some laundry. I even went grocery shopping with my family (my hubby pushed the cart of course)!

Sunday, May 27, 2012-
It’s raining again today, and the chilly dampness is effecting me. I’m achy everywhere, but my lower spine especially. I wasn’t able to go to church today.

Wednesday, May 30, 2012- (Humira Injection Day)
Since my prescription for Humira hasn’t been filled yet, I had to drive in to my Rheumatologist’s office today for an injection (this is my second Humira injection). The nurse had me give myself the injection. She walked me through everything and I did it! It still burnt, but thankfully the burning doesn’t last long. I think I will be just fine injecting the Humira by myself the next time at home (my prescription should be filled by then).

Monday, June 4, 2012-
It’s been a full 5 days since my second Humira injection and I’m feeling pretty good. I still have pain, but I’m not in awful pain like I was a month ago. My energy level has been consistently good over the last 3 days, and my spine pain is MUCH better. THANK YOU GOD!

I got the news today that my insurance approved my Humira prescription and is actually sending the Humira to me overnight, so it will be delivered tomorrow. After my insurance picks up the tab, my co-pay is $30, but with Humira Co-Pay Assistance, my co-pay has been reduced to $5. For any of you concerned about your co-pay amount, make sure you sign up for co-pay assistance. I’ve heard many of you have much higher co-pays than I do (like $350 monthly) and they have all been reduced to $5 thanks to this program (Course, Abbott Laboratories is already making a fortune off of Humira anyways, the least they could do is pick up the tab on our co-pays!).

Comments

  1. says

    I wish you well. Another friend in Oregon has had various autoimmune diagnosis… I’m not sure that anyone who doesn’t have it can fully understand… I enjoy the idea of talking with you in ALaska… I was going to bring my Girl Scouts up there for a trip (one yr I thought I had cancer and wondered what I would want to do, and 1st thing came to mind was: “Take my scouts to Alaska!”). I live in DC… if it was Washington DC you were talking about (well, just outside in MD — Maryland :). I wish you well ~ Warmly, Maria

  2. says

    Hi – I just wanted to send you a smile and tell you that you are not alone in your frustration with insensitive rheumatologists! My ND sent me to a rheumatologist, and he gave me my diagnosis, but he offered NOTHING in the way of treatment. He said my condition was uncurable and untreatable. I refused to accept his diagnosis and went out of state to find someone who could offer me more hope. Meanwhile, my ND here in AK has been great with helping me manage symptoms. I encourage you to seek 2nd, 3rd, 4th opinions — whatever you need to find a compassionate doctor who cares and wants to help you! Thanks for publicly sharing these personal posts! It is so helpful to know there are others out there going through the same experiences.

  3. says

    Megan.

    I just can’t believe what you are going through. You are amazing and so strong. I’m so, so glad you are getting some reprieve! And hooray for the insurance.

    And about the doctor, I am right there with you. It’s heartbreaking to encounter those doctors (but I’m glad you have a good one on your side). I hope this upset has passed. It’s the last thing you need straining your immune system. I’m so sorry.

    It’s so wonderful of you to share your health and progress.

    Thinking about you…

    Love and Hugs,
    –Amber

  4. says

    I’m glad you’ve been feeling better these past few days…autoimmune diseases vary so much from day to day — i’m right there with you, i have ulcerative colitis. I’m so sorry you have to deal with this. Sending good thoughts and prayers your way:) hugs!

  5. says

    Thanks for sharing your story. So very sorry to hear of all you continually must endure. That MD must be someone who also see Lymies… :(. Stay close to Jesus knowing His grace is sufficient each day and He will not, will not, will not ever allow you to take a single steps of this journey without Him by your side. Hugs and prayers-

  6. Linda Stoddard says

    Lose the doctor (May 25). You don’t need that inappropriate behavior, especially from a doctor! Good that you are improving–hope that continues! xoxLin

  7. Robin says

    This is my first comment here but wanted to say, hang in there and dump that doctor! You already deal with more than most people could handle, let alone a docotor who treats you like that. I have been there done that. I have Lyme disease and we get treated this way ALL THE TIME. I have a great LLMD (Lyme literate MD) who treats me like it is not all in my head and that my illness is legitimate. In your above post for May 26 really caught my eye. I know you have been diagnosed with many AI diseases but you have you ever had a Western Blot done for Lyme? I have had the night sweats and the burning feet, aches etc(the list is long) from Lyme disease and the co-infections I also got from the tick. It might be something that could turn the corner for you. Just a thought. I hope you are feeling better today and that it is a good day for you!

  8. Christina G says

    I am new to your blog and so glad to see your posts on auto immune disease AND food allergies. I was diagnosed in Feb with primary Sjogren’s and Fibromylagia. I also have 12 + life threatening food allergies. I also live in the Seattle area and have a WONDERFUL Rheumy.
    You do not need a bad Dr! I hope you found a new one! I am sorry that you have so many auto immune diseases. And it sounds painful!

Leave a Reply

Your email address will not be published. Required fields are marked *


8 + four =

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>