token post

The good news is that I am actually typing this myself so there's physical improvement! I switched from Orencia which seems not to work very effectively for me (it seemed to have some benefit but not enough to decrease the "supportive bridge" medicines or to reach the prior level of functioning that had been reached on Humira or Remicade) to Enbrel. Yesterday was the 2nd dose of Enbrel so I don't know about the total amount of effectiveness yet. I have high hopes because it functions like Humira and Remicade both of which worked well for as long as they were effective.

The bad news is I am typing in a modified way because I have 3 stitches in the end of my ring finger. Other bad news is that the power supply on the desktop (faster with better keyboard) died. The new one arrived and the plug for the hard drive was the wrong kind. So no further training or use of DNS for now and limited typing before I have to quit.

And there have been more hospitalizations and serious illness since Christmas than in the last 6 months. So the dissertation is pathetically lagging. It almost seems like a conspiracy to keep me from working on it in any significant way.

Meanwhile, both girls are significantly involved in sports and music so life is incredibily busy. And, the small raise in salary helped me move forward in hiring, rather than merely wishing to hire, domestic goddesses!

What's been going on

To make a long story long, I really need for Dragon naturally speaking to work correctly. So I have to train it. Therefore, you will get posts that are too long and have too much detail with the sole purpose being to help me train DNS.

I sincerely apologize for the drudgery, the whining, and the extraordinary amount of detail that is completely unnecessary. If you are looking for an upside: it does put something to read on my blog.

TMI Chapter 2: rheumatoid arthritis and “Big Dog” medicine

The Remicade begin failing in the spring . Anticipating the need to change to a different biologic, my RA doctor gave me brochures for Orencia and Rituxan in June. And the head nurse was given instructions to begin the paperwork to get insurance approval. During the July appointment, approval in not yet been received and the doctor’s clinic had been bought out/merged with a larger group which required a completely different computer system, different billing department, different insurance department, different lab protocols, and different lab personnel.

By August the office changes were not as stressful. And, they had received insurance approval three days before my appointment day. good enough. So I started Orencia August 4 and had appointments at two week intervals for the first three doses. I found out that Orencia is a “slow load" During the first infusion (it is delivered via I. V.), and that results are not usually noticeable until three months. That was well past the date for comprehensive exams and I was quite concerned about my ability to function.
I was having pain that my doctor identified as nerve pain rather than the usual muscle and joint pain. I don't remember my RA being inflamed enough to add nerve pain during any previous flares. But once identified, Lyrica was added. It made a dramatic difference in three days time. It gave me, “Swiss cheese” brain but managed the pain.

So my thought processes were not what I wanted. I had significant difficulty walking, and my shoulders were very painful. But my hands were fine for typing and writing.

I'm now far enough into the dosing that I can tell it is working, but it's not fully effective yet. At least that's my hope; that I will continue to feel better. I still battle fatigue that is very thick. As a side note,. There was an interesting event that developed in October when the insurance declined to pay for the Orencia . Yes, The pre-approved medicine was denied. It is billed at $3000 per dose. I think it's straightened out now, but it made for some frustrating phone calls that involved too much Muzak and too many transfers with not enough clear answers.

too many what?

If you follow this link , you will discover that my problem is too many Smurfs ...

how old are those researchers?12?

the application of theory update

Today, I received the first dose of Orencia. Yeah! The insurance approval came through on Wed July 30 late in the afternoon. But the infusion nurse was out of the office on Thursday and Friday, so when I called on Friday to check the status of the request, the "office" nurse thought it was approved but not positive. I found out, for sure, when I got there this morning.

The first three doses are administered at two week intervals. The next doses are August 19 and September 3. Comprehensive exams begin September 9. Today, I was told that Orencia tends to have a slow start -- not exactly what I wanted to hear. How long? It may take 3 months to really tell the difference. The infusion nurse said a lot of her patients have told her they could tell the difference in 6 weeks.

side note: A long time ago, I thought I would be an MD. When I finally relented to the call that was so powerful, I said to God, "Fine. If I can't be an MD then I want to be a PhD." The timing and money fell into place for the PhD all the way up to this point.

So, at this point in the intersection of PhD and arthritis, I am consciously choosing to keep trying to study and adopting the mantra, "The God who brings you to it will bring you through it."

software solutions update

Things learned on a Saturday night:

• The mouse wheel noise is "room room room room."
• The headphone cord picks up movement and creates spontaneous editorial comments.
• The on and off positions for the microphone icon are not appropriate for someone who is 12.
• Sometimes commands become commentary.
  
• Speaking louder does not increase understanding.
• It does not recognize most of the seven words you can't say on tv.
• Laughter is poorly translated into a repeated word. The word chosen is dependent on pitch.
  

Predicted outcome: I don't think it will significantly add time to my work after enough training has happened.

software solutions

In an attempt to reconcile myself with the functionality of my body and my need to produce documents, I have obtained a well known voice recognition software program. This is proof that it really does work pretty well.

On the advice of Disability Services at the University where I am scheduled for comps, I was exploring the software options before the most recent arthritis concern. Just in case. Now, I think that was pretty good advice. The software package came with a wired microphone headset that seems to work well. However, if I upgrade to a Bluetooth headset microphone, I can even wander around while writing.

I guess the next thing to do is to write my sermons with this program. So then I will get used to it before I have to take comps.

The most awkward thing so far is actually speaking my thoughts out loud. I'm so used to typing my thoughts that speaking them is odd.

And then there's the editing, I don't have it completely figured out yet. But a few mouse movements and keyboard strokes go a long way.

when the theory applies

The Theory
Excerpted from Ask the Expert (While this refers to psoriasis and psoriatic arthritis, I have Rheumatoid Arthritis and the facts here are also applicable to me.)

"All 3 anti-TNF medications (etanercept [ Enbrel ], adalimumab [ Humira ], and infliximab [ Remicade ]) have been shown to be amazingly effective and safe in the treatment of psoriasis and psoriatic arthritis. However, a few important anti-tumor necrosis factor (TNF) realities must be appreciated, all gleaned from a worldwide experience with these wonderful new medications over these past 5 years: [huge snip of of points 1 and 2 which also apply but aren't the particular focal point for this post]

All of the anti-TNFs may "run out of gas" to one degree or another after 2-3 years, and some type of medication switch or dose change is needed. "

The Application
Two years ago I maxed out the dosage while losing effectiveness for Humira and switched to Remicade. Now I am 0.5 mg/kg short of maxed out on dosage for Remicade and I am very clear that it is no longer effective. (My methotrexate has increased and I am very clear that it is providing as much relief as it can. But it's kinda like a 4-cylinder car trying to do the work of an 8-cylinder truck.) My next dose is scheduled for the first week of August. Depending on insurance, I may receive a new medication by then (probably Orencia). I am so clear about the lack of effectiveness of the Remicade that I called my RA's office on Friday to make sure the paperwork with the insurance company is being done. I rarely follow up with them because they are so efficient. That phone call really was a reflection of my anxiety.

Let me elaborate. The anxiety is driven, in no small part, by the fact that I am scheduled to sit for comprehensive exams for my PhD in September. A delay in the paper work or approval by insurance means a deteriorating ability to study which is already compromised by "brain fog." "Brain fog" is one of those things that you usually learn about from others taking methotrexate not the doctors, although some of them do tell you. Brain fog tends to occur close to the dosage day and your brain is slower, better with recognition than recall, and sometimes stuff is just gone. As you move away from the dosage day, clarity returns. With the increase of the methotrexate, I've had an increase in side effects that my body had pretty much adapted to on the lower dosage so I've had a return of brain fog that I was kinda used to not having. And, further more, since the Remicade is failing, I am noticing the drop off of the relief provided by the methotrexate toward the end of the week. So when I don't have brain fog, I have pain -- which isn't so conducive to thinking either.

So now, already overwhelmed with the task of organizing and studying for comps, I have added brain fog, pain, and fatigue. So, am asking for you to pray for these things: 1) that the paperwork is completed in a timely manner and the insurance approves the switch for the first week of August; 2) that I can set aside the "overwhelmedness" long enough to get some focus for the organization needed to study; and, 3) that I can actually have productive study time.

And applications for study buddies are open now.

well said

When Robert Louis Stephenson, racked by tuberculosis, was nearing the end of his life, his wife came in one morning and said, "I suppose in spite of all your trouble, you will tell me again that it is a beautiful day."

The great novelist answered, "Yes, my dear. I refuse to let that row of medicine bottles be the circumference of my horizon."

spoons

We have a running joke at our house that someone can make the Sportsqueen laugh just by saying the word "spoon." In general, in the right circumstances, it works on almost any jr high girl and some boys. With that history, my curiosity was naturally piqued when I stumbled across a website about chronic illnesses that had a link to "the spoon theory."

The website is butyoudontlooksick.com and the spoon theory can be found here or, of course, click the sidebar link from the main page.

While my curiosity was piqued by our humorous home life, I think the spoon theory is a great analogy for what it means to live with a chronic illness.

Spoons now have another layer of meaning for me.

I may have to visit their store for a "got spoons?" mug.

The House that Jack Built

so here's my monthly post kind of explaining the recent absence

I got an upper respiratory thing at Easter which meant I had to skip multiple doses of multiple arthritis meds (under doctor's care -- not on my own) in order to decrease likelihood of pneumonia.

Skipping doses of arthritis meds led to arthritis flare (not really unexpected).

So pretty much the choice was high chance of pneumonia or painful, swollen joints. Since pneumonia decreases breathing capacity and has a greater mortality than swollen joints, the lesser of two evils was swollen joints.

The swollen joints decreased my ability to type or write (and other things weren't so easy either) leading to an incomplete for Qualitative Research Methods, no posting on my blog, no geocaching even though there are new caches less than 0.2 miles away, lack of sleep, and extreme fatigue. The coursework is still not completed but the arthritis is not interfering as much anymore since the meds are kicking in (every pun intended).

And even this abbreviated version of the story feels like "The house that Jack built."