Preparing for the Holidays: Gifts

I finished a good portion of my writing, and it has been so nice to spend some time relaxing. I know that a lot of people thought that's what I have been doing for the past few months, since it has taken me so long to accomplish anything, but I do not count saving all my energy to put toward work as very relaxing, even if it did involve resting much of the time.

One of my primary projects currently is planning presents for the holidays. I usually am so busy with midterms and/or finals that I do not have as much time to dedicate to creating personalized gifts as I would like. And, since I am on a student budget, crafty personalized gifts are the best use of my limited funds! Though I cannot share the specific projects I have chosen, as I do not want to give away surprises to any family members who read my blog, I thought I would share some of my favorite sites for DIY gift projects:

Design Sponge: click DIY on the left sidebar for a whole range of crafty ideas, many of which link to free patterns/instructions

Burda Style: click on Projects at the top, and then "projects you can make" for a lot of different sewing ideas and free patterns.

DIY Fashion at About.com: use the left sidebar to browse jewelry, clothing, bag, and accessory ideas/instructions (note: requires time to browse; the listings aren't lovely or well-organized and the projects can be hit or miss with some requiring expensive equipment. That being said, there are definitely some hidden gems of cheap, easy, and cute ideas).

When I do not have the time or energy to make things on my own, or if I am at a loss as to what to gift someone, I shop at Etsy.com. I have found some really awesome gifts on there for very reasonable prices, even for the most difficult to gift people. It takes a bit of browsing to find the perfect item, but I can do it from the comfort of the couch or bed as opposed to standing and walking through crowded stores. I love that I can search local merchants, to reduce environmental impact of shopping online, and to support the work of individuals in my community. It has certainly made my life easier to not have to drive from boutique to boutique, find parking, and walk blocks to find a beautifully crafted gift for a friend or family member each time a birthday or celebration comes around!



These are some ways that I save money and energy preparing for the holidays. Do you have any tips or tricks to share?

Just as a note, I have no vested interest in promoting any of the sites I link to in this post. I simply find them useful in my own daily life!

An Update and Conveying Improvement: "Better" v. "Less Bad"

The bad news is that my instincts were right, and my body simply does not perform on command. I drank caffeine and took meds this week without nearly the problems I had had in the past. I was able to record a few things which I guess help my doctors figure out what is going on, but I wasn't able to document the particular reaction that was most unpleasant and concerning the past few times I have had stimulants. Part of why I probably did not react the same way is that I have been feeling fairly energetic lately. In the past, I have used stimulants only when I feel my worst, and had a bad reaction, but if I'm feeling good to begin with, they do what they're supposed to (I just don't need them in general). The huge variance and unpredictability of my symptoms from week to week and even day to day makes it difficult to "force" symptoms in a limited time frame.

The good news is that my reaction to stimulants seems not to be bad anymore. That was the entire goal of bringing up the symptoms to my doctor--so that I could drink coffee/tea again. I enjoyed my first cup of coffee in a very long time (by enjoyed I mean I did not end up feeling like I was dying an hour or so after finishing). That was pretty awesome, as I really do miss it. I am still working with the cardio and have non-stimulant med options if I start to have incredibly low energy again.

On the topic of energy, I just realized recently how thoroughly I have adjusted to my new baseline. I was speaking with a friend who talked about how her house was spotless and elaborate dinners were on the table when she worked from home, since she could do chores and cooking in between answering emails and making calls. While she was talking, I was just thinking about how incredible it is when I have a day where I'm able to finish a paragraph of writing OR do a load of laundry OR make a meal. Those days I consider my "moderate energy" days, and are what I am referring to when I say that I've been feeling better this week. I think one of the most difficult things for me is conveying to people that even if I am feeling better, I am still well below the level of energy of a healthy adult. This week has been good because I have not spent the majority of any days in bed. That's not quite the connotation triggered in someone's mind when I tell them I am feeling better or have more energy.

An ever present challenge of having a chronic illness, it is really hard to find the balance in conveying limitations, celebrating minor changes, and desiring future improvement. Telling someone you feel better often means their expectations of what you can do exceed what you actually can do. Doing something outside of the ordinary often leads people to assume you're doing better, because they rarely see all of the things you had to sacrifice for that one task or event. Giving people a realistic picture of bad days and good days often comes across as negative, because the definitions are so far removed from what everyone else uses the labelling for. When talking to doctors, doing better or feeling good are usually the only words heard, even if the explanation that follows allows for much greater improvement before "normal" is reached. And, of course, just smiling along with people as they assume what you're feeling and/or denying your own limitations often leads to big crashes (in my experience anyway).

Which brings me to my blog. I am thankful to have a place where there are others who understand how bad it can get, how wonderful the small (by normal standards) accomplishments are, and how, despite the distance between here and there, it is not an option to stop hoping that we will be able to acheive some semblance of a healthy energy level again in the future so that we can get up off the sidelines and engage in all of the everyday activities that happen so easily for the majority of those around us.

XMRV Test Becomes Available

The Whitmore-Peterson Institute, which made the discovery of the XMRV virus in CFS patients, has endorsed the XMRV test currently available through VIP Dx Labs. Net proceeds from the test will be donated to research. The test is identical to the test used in the XMRV study and has been thoroughly validated.

Brain Fog

For the past couple of days, my energy levels have been fairly good (for me) but my brain fog has been really quite bad at times. I have been incredibly forgetful, often not having any idea where I put things like my keys or shoes or wallet. When I think about where they might be, the last thing I remember usually happened hours or days prior, and is of little help now. This is the same sort of brain fog that I had back when I lost my cell phone. Only presently, it may be worse. Last night, I went to go give kitty a daily medication. I walked into the other room shortly after, and M. asked how it went giving the pill (sometimes it's a bit of a struggle). I replied that it had been fine, but then I realized I did not recall actually putting the medication in the cat's mouth. The last thing I remember is taking the pill out of the bottle. I decide I must have left it somewhere, so I retrace my steps. I remember taking M.'s glass from the table to get myself some water, but the pill is not on the table. I walk into the kitchen where I filled up my glass from the sink in order to take my birth control...oh f#%* What had actually happened is that as I was opening the pill bottle, it reminded me that I needed to take my birth control pill. Instead of finishing the task at hand, this somehow led me to skip giving kitty the medicine and getting out my bcp, and I took kitty's medicine myself. And I did not realize it at any point in time, even after the fact. If M. had not said something, I doubt I would have known until the next evening when I saw that my bcp was still in the package from the day before (although, even then I likely would have thought I just forgot to take it). Needless to say, when I realized I was both laughing and crying. Laughing because it was incredibly ridiculous (the medication I accidentally took happens to be a human med at a very low does and one dose was not going to affect me negatively), and crying because I cannot remember what I am doing at any given moment. This was also not the first incident yesterday of forgetting what I was doing and doing a similar task that did not accomplish what I had wanted. In fact, as I was leaving the room M. was in, and talking to him on the way out, I turned out the light on him. It has just been one of those weeks.

Caffeine and Cardiologist Visit

I had a chance to speak with my cardiologist this week about the strange and unpleasant reaction I have to caffeine and stimulants. They (my doctor consulted with a cardio who specializes in electro-physiology) have never heard of such a response. So now I have been instructed to again take the medication that caused days of discomfort before, only this time I am equipped with a beeper with which I can record any significant heart events. The info from the beeper should be able to tell them where the problem originates, as multiple signal mix-ups could cause the symptoms. The upcoming week will be both good because I will finally get to drink those delicious fall espresso drinks I have been smelling in the air and craving, and bad, because I definitely do not feel well after the fact. Although, in the past when I have been under observations, transient symptoms have been unlikely to appear, so it is possible I will react like a normal person this time!

I forgot to ask if there were any ways to correct the symptoms, once the doctors have more information about the source. I know that there are people who can live very full lives without caffeine, but I do not consider myself one of those people. I have never been a morning person, and, in fact, I had to be dragged out of bed from preschool on out. In high school I think I would have beat out Brecken Myer's Clueless character for first period tardies starting the day I was able to drive myself to school (in part because stopping for morning coffee was a necessity to staying awake through class). I even changed majors my first year in college because the required classes were all at 8 or 9 am. And this was just my life before CFS. I simply cannot imagine doing school or work without caffeine. It's true that I have been functioning without it since late spring, but considering it has taken an extra six months to finish my research when I am doing nothing else, I would not really consider myself to be functioning efficiently without it.

So, while I am still waiting for that magic pill ;-) I'd love to hear what helps you all with mornings and energy.

Lupron: Overpriced Poison?

Endochick posted this interesting article on Lupron, a medication used to treat endometriosis. Lupron can be a good option for some women, especially as a last resort, but I believe that it is often overprescribed. My doctor wanted me to try it before diagnostic surgery. I was uncomfortable trying a very expensive medication with so many side effects without even knowing whether endometriosis was present, and advocated for the laparoscopy. Surgery has its own risks, but it would at least let us know whether I had endometriosis and the extent to which it was present. My doctor then encouraged me to take it directly following surgery, before enough recovery had occurred to tell whether the lap had been effective at relieving pain. I declined, in large part because I was afraid of re-triggering CFS, and I was lucky enough to have early stage endometriosis and huge pain relief from surgery. The CFS was retriggered by surgery anyway, but I am very grateful now that I did not go through months of unnecessary side effects from Lupron in addition to everything else. Each individual is different, and for some, Lupron can provide a huge improvement in quality of life. The most important thing is that women requiring treatment for endometriosis are informed about the benefits and risks of all options available and can make a decision with the support of their doctors.

About My Research...

If you are viewing this on my blog, I realized that the third frame is cut off the comic. You can click on the comic to see the full strip. Sorry!