Trying to Tame the Wolf

...and get on with my life.

Making things Easier: Grocery Shopping
wolfinohio

Now that I'm feeling a bit better, I wanted to discuss a necessary evil in my life: grocery shopping.

Due to the fact that I'm usually home, grocery duty tends to come down to me. I'm also a bit more savvy about gluten free shopping than my boyfriend (I found out I had Celiac Disease almost 9 years ago), so I can zip through the store a bit quicker. Since I go grocery shopping at least once a week, I can conclusively state that shopping wears me out. I get home, throw the perishables in the fridge or freezer, then veg on the couch until I can function again. Pain and fatigue levels are way higher after a grocery run, and I haven't found a way to prevent that. But here are some things that help.

1. Write a digital grocery list then rearrange the list so that the items are approximately in the same order as you will encounter them walking around the store. Usually this means the produce should be first, then the deli items, then the baked goods, etc., but if your method is different feel free to change it up. This way you won't have to backtrack and you end up doing a lot less walking.

2. Instead of waiting at the deli counter, meat counter, etc. buy items that are already packaged. Then you won't have to stand in line and use up energy.

3. Go at times when other people are at work if you can. This allows you to avoid standing in line at the check out stand.

4. Go to a smaller grocery store, then make shorter targeted trips to larger stores to get specific products. Again, less walking.

5. Have the bagger separate perishable items from nonperishables. Then the perishable bags come inside and the nonperishables can wait in the car if you are tired. Depending on where you live, you may be able to leave everything in the car for an hour or so in the depths of winter. (Grocery stores are saving money by not hiring baggers. Don't feel bad about waiting for the cashier to bag if you don't feel up to helping. That's their job.)

6. Ask for and accept help to your car, especially if you have heavy bags, soda bottles, or cat litter.

7. I've never done this (partially because I'm short and have enough trouble reaching things on the shelves while standing, let alone sitting), but you absolutely can use one of those mobile grocery carts if you need to. You don't need to ask permission, and anyone who comments on it is just being ignorant.

8. If you really don't feel up to shopping, ask a friend or family member to help. Research grocery delivery services in the area and use them when you your friends aren't available.

So there you go. Any other good tips?

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Is it the weather?
wolfinohio

Yesterday, the high was 65 degrees. Today, it was only 35. The barometric pressure here doubled overnight as well. So, naturally, when I finally convinced myself to get out of bed, my joints started to complain vigorously.

I was honestly looking forward to finishing something today and sending it to my advisor. But I spent my entire morning in pain. I can hardly believe this, but I've got a lap pro (link) holding my iPad and it contacting the upper part of my knee makes it hurt more! It's probably one of the most comfortable tech tools I have, and it's hurting me! I'd pull it off of my knees, but then I couldn't use my nifty keyboard. Better make this short.

I've never been sure about the connection between weather and arthritis. It seems like the studies are kind of fuzzy on whether an association exists. Some studies say yes. Others say no. It could be a huge coincidence that I got worse today... but then, maybe not. Large drops in temperature have been linked to arthritis activity in at least one study.

So I didn't get a lot done today. I hobbled around the house, trying to distract myself, and debating how much medication to take. I even tried some of my old prescription naproxen, which did appear to help a bit. I called the rheumatologist's office to ask if it's safe to take it regularly while on methotrexate, but I haven't heard back yet. I'll update when I do.

Apparently the blog carnival starts tomorrow! So, if there are any readers from that, hi!

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Brain fog
wolfinohio

Yes this did just happen to me... 34 points. Sometimes I try random arrangements of letters to see if they work... and occasionally I get lucky. But it's not usually a familiar word...

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Daily Reflection January 8, 2013
wolfinohio

Today... well it was not so productive.

After my previous journal entries, one of which was mostly written two days ago, I pretty much parked myself on the couch and did nothing of any importance. Sometimes I forget what real fatigue is like, and then I'll get a new taste of it. Lately, pain has been the dominant factor in my productivity, but today it was the fatigue. As fatigue goes, I'd rate it a 7/10... in other words I don't want to move, but I could if I absolutely had to. Do thesis level math? I think not.

Another weird thing is pain tolerance. When fatigue goes up, my tolerance goes down. I think my joints actually are worse today than yesterday, but I'm sure the fatigue isn't helping. I didn't quite melt down in a cranky, crying mess over it, like I would on certain days, but I did take a bit more pain medication than I had intended. I also rested, took a quick walk to the pet store and back (feeling like the tin man most of the way), and took a nice bath. I did some cognitive behavioral therapy exercises to help put my decision not to work today into perspective. I think I've managed to forgive myself for listening to my body instead of working today. I can never know if that was the right decision, but at least I embraced that decision instead of agonizing over it. That type of stress would probably make my symptoms worse, and perhaps make them last longer.

So hopefully today's break, and my decision to embrace it instead of fighting with myself over it, will mean that I will feel better tomorrow.

Also, I know suddenly I posted more than once in a day. It's because tonight I got the iPad keyboard I ordered. I'm really loving being able to blog on my iPad without having to use the on screen keyboard. Hopefully I will continue to blog frequently. But honestly, getting back to thesis work is more important.

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Neurontin Diary - Days 4-6
wolfinohio

This is going to be a short one, since I really should get going soon.

I can confirm that neurontin works for me. I take it four times a day now, basically every four hours. I've noticed a huge improvement with background pain. I wouldn't have divided my pain into different categories before, but now it seems some of my pain was in the areas around my joints and other pain was in my joints. The pain around the joint is pretty much gone now. The rest of the pain is usually manageable, although at the moment my knees and right hip are not happy with me for some reason and my back hurts a bit as well.

So not a panacea, but a huge improvement! Hooray for progress!

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PFAM: Learning to Live Again
wolfinohio

I've read a bit from previous PFAM blog carnivals, and thought participating would be a wonderful way to make some connections for my new little blog... As well as encourage me to keep going with it. This month the theme is Renewals, and boy do I have some need for renewals!

2012 was just not my year. I was diagnosed with Lupus, then downgraded to Undifferentiated Connective Tissue Disease. I started medications that helped my Bloodwork, but not my quality of life. I pushed back the deadline for my masters thesis four times (I'm still not done). I moved to a new city in a new state and got new doctors. Finally, I had to postpone looking for a job in order to care for myself. I'm still unemployed. During this time, I experienced several flare ups. My inability to control my symptoms (particularly pain) took its toll. I became depressed and withdrawn.

In my heart, I want to say I can fix all of these things this year. I would love to make that my New Years resolution. But the truth is that my life is still unpredictable. I'm still sensitive to even the smallest failures. And my illness is still capable of cropping up and causing its damage. Instead, my New Years Resolution is to learn to live again. I'm going to learn to deal with my new normal and learn to get things done despite chronic illness. And when things don't go perfectly, I aim to forgive myself. To dust myself off, stand up, and try again.

So here are my goals and resolutions for 2013. I've tried to make them as reasonable as possible so that I can deal with failure if I have to.

Goals:
1. Finish my thesis and get my Masters degree (applied math, if you were wondering) by the end of winter quarter (early March)
2. Find a job by this summer. I may wind up tutoring in people's houses rather than working in industry, but I don't mind as long as my boyfriend doesn't have to fully support me anymore...

Resolutions:
1. Work on depression: I'm already working with a psychiatrist on this, and we have overcome the first major hurdle. At this point, I need to work on getting out more, making some new friends, and improving my self esteem. Speaking of which...
2. Productivity: This is probably the toughest one. Endurance is a real issue for me. I think baby steps are in order. I'm starting with 2 hours a day of thesis work in 30 minute intervals.
3. Resilience: I'm going to have setbacks. So I may as well plan for them. I want to learn to move on after these setbacks... To get back into the groove. I'm not sure the best way to do this yet, but keeping it in mind is the first step.

So hopefully these are all achievable. Now excuse me... I have to go work on my thesis...

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Neurontin Diary - Days 1-3
wolfinohio

Neurontin, or Gabapentin, is among the drugs sometimes prescribed for chronic pain. It is often used for diabetic neuropathy, and is generally used to combat nerve pain. While it isn't really a lupus drug per say, it appears to have some effectiveness with fibromyalgia, which is more common in lupus patients than in the general populace. A Cochrane meta-analysis concluded that about 1/3 of those with neuropathic have significant improvements with neurontin (see here). Also, "there appears to be two types of 'responders' (to Neurontin). (1) Some people have an immediate improvement in stamina and a marked reduction of pain starting Neurontin. (2) Other folks will not obtain similar results until they reach higher doses. And, unfortunately there are people who will not receive any benefit from Neurontin." (I cannot find the original source, which could have been removed due to the trouble Pfizer got into for promoting off label uses of Neurontin, but I got this quote from here)

I wanted to try it for a couple of reasons. The first is that I'm grasping at pretty much anything that might allow me to decrease or even stop my painkiller usage. This is a nice way of saying I'm tired of the constant pain and I'm going to take something to lessen it, as long as I have (legal) access. I'd like that thing to be non-narcotic, but I'll use whatever works. The other is that, while I can't get a rheumatologist to even evaluate me for fibro, I believe I do have fibromyalgia. For good reason, doctors have focused on controlling the underlying disease process, and therefore we have gone from plaquenil to methotrexate with little success. Nevertheless, my rheumatologist said she liked neurontin and that my psychiatrist could prescribe it (technically, it is being prescribed for both anxiety and pain management). She said it might help if I have any fibro pain.

On the one hand, my doctors listen to me. This is awesome. Really, finding a doctor that listens to you and not just the numbers is an important step. When I said I was still in a lot of pain despite my good lab work, they decided to try methotrexate. The assumption was that the labs are missing something, as they sometimes do. So they are still treating me fairly aggressively for autoimmune issues.

On the other hand, I want to know when these drugs start working. What if fibro pain is a significant factor here? If I can get rid of that, I can know more about the state of my arthritis and UCTD issues. It may help us decide whether future increases in my MTX are necessary.

So this is day 3 of neurontin treatment. The first day I took 1 300mg pill in the evening. The second day, 3 pills spaced out through the day. I've already seen something suggestive, although it could be placebo effect. About an hour after taking a pill, I seem to have a short period of decreased pain. It shows in the way my painkillers are spaced out too: I am taking longer between the painkiller I take around the time I take neurontin and the following one compared to times when I have not taken neurontin. Perhaps as time goes on the effect will last longer... Or maybe I will have to increase the dosage. Either way, this is promising.

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Introduction
wolfinohio

Hello there! I'm a 25 year old graduate student currently living in Ohio. Last October, I became ill. After some time, and lots of doctors, we determined it to be an autoimmune disease. While it is not easily classifiable, my previous rheumatologist believed it to be Lupus. At the moment, my diagnosis is Undifferentiated Connective Tissue Disease (UCDT), which basically means that I have a disease like lupus or rheumatoid arthritis, but which doesn't quite fit the criteria for any specific disease. In my case, the disease seems to be on the "mild" side... Meaning that my joints don't swell up and I have no organ damage. Mild doesn't make it an easy disease to manage or cope with... I live with near constant joint pain. Unfortunately, my disease has thus far refused to respond well to most of the treatments I have tried. In the meantime, I have painkillers to get me through the weeks it can take to determine whether a new medication is working.

I felt I needed a blog because I've needed an outlet for my frustrations. Since I became sick, I've had a very difficult time getting much of anything done. I need to finish a masters thesis to graduate, and I want to find a job. Pain, fatigue, and random other symptoms make this very difficult. On top of that, I have an anxiety disorder that tends to interact poorly with my disease. Working any of these things out in words may help me to cope.

I plan to discuss, among other things, my thoughts about different aspects of this disease, coping with pain and anxiety, the pros and cons of different medications, outside pressure to use unproven therapies, and dealing with illness as an atheist. Here's hoping I continue this journal and that we all learn some things on the way!

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