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!).