Monday, August 17, 2009

Easily Distracted.

So, I'm sorry that I haven't updated in over a week. I've been meaning to do it, but I discovered a jigsaw puzzle website ( and it has been getting all of my attention. Well, not ALL of my attention... I also spent last week watching season 2 of Mad Men in preparation for the premiere of season 3 and following a new food and medicine schedule. Basically, I've been distracted. The good news is that I'm starting to get back on track and updates should come more frequently, hopefully.

I've actually been quite busy on the health front. I had a follow up neurological appointment on August 7th and it went really well. I met with the nurse practioner again and I have to say that I really like her. I took a list of things to talk about with item number one being pain. She didn't have a pain specialist to recommend me to just yet, but she did tell me that I could increase my pain med, gabapentin. Apparently, the dose I was taking was just on the lower edge of what she felt was a good therapeutic dose for me. So, instead of taking 900 mg (300 mg capsules 3 times a day), she wants me to take 1800 mg. I'm slowly increasing the dose, as directed, and at this point I'm at 1500 mg. On Friday I go up to the full dose and I think we're finally getting somewhere when it comes to pain relief. You know, when I started taking the gaba, I was taking 100 mg, as needed. Hilarious.

She also gave me more Lyrica, which I'm supposed to take twice a day. However, I'm only taking it at night because it makes me sleepy. I was a little frustrated when I discovered that side effect, but it's working amazingly well when it comes to my insomnia. Speaking of insomnia, it was number 2 on the list. I told the NP that just like the lorazepam, the temazepam worked for a few days and then the insomnia returned, (though now that I realize the Lyrica makes me sleepy, I don't know if the temazepam ever worked). Instead of prescribing something stronger (which is what I wanted), she prescribed a sleep study to be done by my primary neurologist. It's a little frustrating to not get what I wanted, but I agree that there's a bigger problem and we need to figure out what that is instead of just medicating it. Unfortunately, the sleep study isn't until September 30th. Argh!

After we finished talking, she did her normal exam. Not much has changed, I still have decreased vibratory senses, minimal stiffness, and for the first time in years, a perfect visual field test. She was ecstatic. I showed her all the bruising and welts at my injections sites and she was shocked to see where I was doing them. She didn't have any suggestions for the reactions, but did tell me to only do them on the tops of my thighs. I'm finding these sites easier, but just as painful as the other places. From there we somehow started talking about my general non-MS related health and I told her that my primary care doctor is an idiot and I'd rather go to the ER than see her. The NP told me that I needed to have a good PCP and recommended I see one of her collegues. I see Dr. S on Wednesday and I'm super excited to finally have a competent PCP. I'll let you know how it goes.

My next appointment was last Monday, the 10th. In the morning, I woke up with a lot of pain. It was my usual non-MS pain and I knew I had to see my chiropractor. I've only been in to see her a few times since I stopped working for her and it's always a little awkward to go back, but I needed her help. As soon as I woke up, I texted her begging to be fit in. She was able to squeeze me in and I got to see her that morning. I wish her office was closer because I really need to see her more often. I felt so much better afterward. I still need a lot more work done though, and I'm hoping to start squeezing her in on the days I have to go to Berkeley for other appointments.

On that same day, I also had my follow up with the gastroenterologist. While I'm sure he's a great doctor, his office staff and bedside manner could really use some work. I hate feeling like I'm a bother to office staff. And it's not that I had any questions or needed anything special, but the person who brought me back seemed incredibly hassled to have to show me the way and take my weight. Nilaja was with me and the rudeness was so strong that she even asked if I could find a different gastro. I'm really hoping it doesn't come to that.

When we finally got to see the Dr., he seemed to listen to me and really take my complaints seriously. I was pleasantly surprised that he didn't come in with a predetermined diagnosis for me and he also didn't tell me what he "thinks" it is before getting the test results back. I appreciate that because I honestly don't need to spend any time obsessively researching and worrying about another condition that I may or may not have. Instead, he ordered an abdominal ultrasound (scheduled for Aug 20th), a bunch of bloodwork (I'll do that on the 19th), and some sort of controlled study to see how my stomach is emptying. Right now I'm waiting for my insurance to authorize the last test, but hopefully they'll do that soon.

When it comes to the medicines, he took me off of two of the stomach medicines and increased the Protonix. He didn't want to give me anything for the nausea, and recommended I split my lunch and dinner into two meals each (5 meals a day insted of 3). I tried that last week and although there wasn't any vomiting, I still had some nausea. Worst of all, timing the meals out and coordinating them with all the medicines made me neurotic. My entire day revolved around when I was supposed to eat and which pilsl I needed to take. I know that may sound silly, but there are days when I forget to eat or forget to take pills. And with everyone stressing how important it is to eat regularly and take all my pills, it put all my focus into following their orders. And since I don't have the ability to multi-task anymore, it literally meant that I spent the day watching the clock and was completely unable to get anything done.

This week is different. I'm back to three meals a day and I'm taking the pills at meal times. The key is to have breakfast when I get up, before I do anything else and I have lunch when Nilaja takes her lunch. It seems to be working since I've gotten all my pills in, ate breakfast and lunch, and was able to get some cleaning done, update here, and even make chicken stock. I like being productive. Now I need to get off the computer and go make the bed and start dinner.


  1. Ah the stomach emptying test... Just so you know a gastric emptying scan can be highly variable. That is, one day your stomach will empty fine, the next not so much, then fine, then not so much. So it is a definitive diagnosis only if the result is positive (ie. shows delayed emptying). I am kind of shocked he didn't want to give anything for nausea since it is such a quality of life issue :(

  2. I've heard of the stomach emptying test before but not exactly sure how it works. can you explain it to me please?

  3. It varies slightly by facility. At UCSF, I was given an egg, small bagel and water. Each were tagged with a radioactive substance. Then I laid on a table for about two hours and they measure how much of the liquid and solid (they are tagged separately) empty out of your stomach. By far, it is the least distressing GI test compared to everything else (I think I've had every variant of GI test). You cannot taste the radioactive tag at all.

    There are several variations of the test. Namely, you may be there for two, four or even longer hours depending on what the doctor ordered. The longer tests are generally 'more accurate' (if the test is shorter they extrapolate to estimate your emptying time). My stomach, when I last had the test in 2007, took nine hours to empty. Normal I think is like 1.5 hours. At UNC, I just had an egg - no bagel, no tagged liquid substance.

    So painless, very easy. Very boring. Bring an ipod, you can really read a book because generally you are lying flat under the machine which reads the isotopes.

  4. Thanks for explaining the test Susan. I don't know the length of the test that I'm going to take yet, I guess I'll find out when I get approval. I do know that when they did the endoscopy during my hospital stay, I hadn't eaten anything in like 17 hours and my stomach hadn't emptied, so I'm thinking they may have me do a longer one. I'll let everyone know when I find out.

    I was also shocked that he wouldn't give me anything specifically for the nausea. I tried to stress how difficult it was, but he seems to think the Prilosec and smaller meals will relieve it. I don't think he understood that I could have one bite or one sip and the nausea will start. I'm hoping that he'll get the point by my next visit when we have test results and another month of the prilosec under my belt.