Wednesday, December 26, 2012

Normal-Person Busyness

Hellooooooo out there!

Yeah. It's been a while. But, I have reasons...! One reason is that I've been being normal-person busy.

See, sick-person busy is great. It's watching movies, eating three meals a day in bed (if you want), lots of yummy tasting liquid and chew-able vitamins, and keeping whatever hours you want. But you can only watch so much Little House on the Prairie before you're bored to tears....

But the past month or so, I've been normal-person busy - out of bed, up and around, going places and doing things.

I took up a new hobby: family history. I've sorted old pictures, spent way too many hours in the Heritage Room at the library, scrutinized old census records, squealed in excitement over discovering someone's wife's maiden name, and called churches to look up confirmation records. I've found news articles, pictures of grave sites, and obituaries. I've mentally mapped out locations where my ancestors have lived. I have discovered and read first-hand records left by my great-uncle Al who survived World War II as a German refugee. I have discovered and read letters written by my great grandparents, grandparents, father, and uncles written to my aunt while she was attending college. I found and have read a book answering many questions about my grandmother's upbringing and family life. I have a wonderful twenty-one page document, assimilating and containing all this information. My family. My roots. A living tree. It's a wonderful feeling.

Unfortunately, I've been rather stuck for about a week now. It's hard to go back past 7 or 8 generations even in a good line. Some lines I've barely made it back three generations. It's been a lot of work, but it has been good work, and I believe hours well spent.

I've also taken to doing a lot more reading than I had been recently. I re-read Emma, The Secret Garden, The Hobbit, The Count of Monte Cristo and other classics. My favorite, of course, was finishing The Most of P. G. Wodehouse. If I can write one novel in the style of Wodehouse, I will consider myself a good author, even if no one else acknowledges my literary achievement. :) The addition of a Kindle to my stash of prized possessions will ensure that much more reading will come in the near future as well!

Another activity that has been occupying time spent at home has been sewing and other crafty projects. It started around the beginning of December when I made a batch of home-made Christmas cards using card stock and brown-paper bags. I didn't have any glitter so I decorated them with Kosher salt crystals instead, which looked rather like snow, if I do say so myself.

Then my domestic ambitions were heightened and I decided to experiment with some garment alterations. I have several skirts made from good material that are simply no longer in style. So, out came the scissors and I shortened them (and skinny-fied them, since I haven't exactly been eating bon-bons and chocolate truffles...). And vwalah, I have several skirts I will be able to wear when the weather gets warmer again! Most of the alterations were very simple. The most complicated one was a tiered skirt. I removed the top tier with its waistband, skinny-fied it by taking up one of the side seams, put a zipper in the side seam (since before it had been elastic-waist) and then made a new waistband. I became very good friends with the seam ripper on that skirt. It was a pain in the neck. But now it's all done!!!

Other miscellaneous activities: going to a game night, making cookies, cooking wonderful food, taking walks, working out, teaching myself some yoga, bandying with insurance companies, decorating a demon-possessed Christmas tree, etc.

To keep from boring you, the most adventurous normal-person thing I've done has been to build a resume. One of my brother's friends has agreed to take a look at it before I submit it anywhere, so hopefully he'll be able to give me some good feedback and things will go well from there. I've spent a little bit of time looking for office assistant jobs on craigslist and some other job sites. I'm excited to start working again, getting out of the house, doing things, seeing people, making a difference in the world.

Merry Christmas, and a Happy New Year!

Camille

Thursday, November 8, 2012

Catharsis

I've blogged about some of my favorite words before, and this is another one that I would have to put on my list of favorite words: catharsis. Catharsis means purging, purification, or clarification, as relating to an individual's emotional state. Discovering catharsis has been a huge part of healing for me. (I just spelled 'discovering' as 'descovering.' Apparently my acquired dyslexia still is hanging around....) A cathartic conversation with a friend allows me to get emotions out. Sometimes it takes a while for the emotional state to resolve itself. Other times it comes very quickly. But I have discovered one thing: if I in any way try to short-circuit this emotional process of purging, I will inevitably inhibit healing. It has happened numerous times. Showing emotions is natural. There is nothing spiritual, attractive, or realistic about hiding them. When emotions remain suppressed they can lead to physical problems as well as greater and deeper emotional ones (stress, anger, anxiety, bitterness, depression).

This morning I was in need of a good bit of catharsis. I have been growing increasingly more frustrated with our insurance company and the manner in which they have been handling some of the bill submissions. For each provider, I am required to fill out a certain form, provide proof of payment, and make sure that certain information is present for each item. Today I worked on gathering and resubmitting some of this information for the third or fourth time. To make things more frustrating, some of the information that was alleged to be missing has indeed been on all the forms I have submitted. I am not submitting anything new this time around (except for a few new bills...) and yet I am being required to re-document and re-submit information which has already been provided. I'm also being asked to provide justification for my prescriptions, which has never been required before. The frustration boiled over in tears and a few outbursts of anger at the company itself, but now it's over. The forms are all in order, and I hope this time they will be accepted. If not, I might have a bit more catharsis to get out in a bit of a more robust manner, because sitting at a desk filling out forms isn't very cathartic. It was useful, but I think a half-hour session with a punching bag might have been more appropriate.

What I don't understand about these insurance companies and their nit-picky requirement is, don't they understand we are sick? Don't they understand how time-consuming these forms are? I have too often met with negligence, miscommunication, and a lack of clarity when working with these companies. Maybe I should cut them more slack than I do, because I genuinely don't understand how their systems work, but really? Not looking forward to health care becoming even worse when it becomes a socialized industry regulated by the government.....

Tuesday, November 6, 2012

Three Reasons Today is Important to Me

Today is important to me for a number of reasons.

First, it's Election Day, and I am excited to cast my first presidential ballot. I've always been a bit of a political idealist. I love reading how politics are supposed to work based on the Constitution, electoral college, checks and balances, and the view that the best leaders would naturally rise to the top, like cream on milk. The political corruption which is reality saddens my heart, but I am still thankful for the moorings provided by the Constitution and the conscience of the American people.

Second, it's another day in NaNoWriMo - another day to write a story I feel has been pent up inside of me for a long time. Already my novel is at 12,000+ words on day six of this challenge, averaging a little more than 2,000 words a day. Writing this novel, is, in a sense, part of healing for me. This is not a novel that I ever think will be made available for publication (get real; I'm writing it in a month. It's going to suck!), but the experience of writing and the themes have nonetheless become very therapeutic.

The third reason today is important to me is a very sad reason, as today marks the funeral of an ME sufferer from the UK, Emily Rose Collingridge. I hope you will take a few minutes to Google her name or read an article about her case. Emily suffered from ME from the young age of 6 all the way to her death at 30 years of age. Her symptoms were many and very extreme, including periods of blindness, paralysis, and double incontinence. But in spite of being worse than bedridden, this extraordinary young lady became an advocate for ME sufferers and even wrote a book as a guide to living with the illness that claimed her life. Hats off to Emily. Her story has motivated me to raise what awareness I can in order to help severe ME patients know that they are not alone.

What makes today special to you?

Thursday, November 1, 2012

Academic Plans

One aspect of my appointment that I didn't mention in my appointment review a few days ago was that Dr. Conley and I discussed my academic plans. Going back to school in January had been something my parents and I were still discussing. While I am anxious to return to school, there were a number of areas where healing needs to take place before I feel I am ready to go back.

I want to know I will be able to walk around campus, for one thing. I know a number of students who bike, but that hill going down from Hotchkiss scares me, and the idea of carrying a bike up and down all those steps isn't particularly appealing either. I have taken two walks so far, but the difficulty of doing even that was readily apparent the following day due to some strained or pulled muscles. I need to start doing baby-step workouts and build my body back to its old strength. 

Second, I'm still working on various aspects of social life, such as being able to handle seeing a lot of people in a short time (which inevitable happens in a college setting). Along with this consideration I include church attendance. Mine has been more consistent the past two weeks than it has for a long time, but it still has a long way to go. 

Third, with as disturbed as my sleeping patterns have been, I don't feel that living in a dorm (even one as quiet and well-behaved as Dixon) is in my best interest just yet. If off-campus living arrangements were feasible, I would probably take that option, but my inability to drive limits me in that respect, because I would have to live with someone who has a car and wouldn't mind taking me to campus. However, my special dietary restrictions also complicate living off-campus. 

Finally, there are certain spiritual aspects that make a return to Master's difficult at this point. In spiritual terms, this ongoing situation has been a trial of faith that has rocked my world and threatened my belief system. I do not pretend to have emerged unscathed.

So, for the time being, I will be at home at least until the Fall semester of 2013. The adventure continues.... :)

Wednesday, October 31, 2012

Gluten Free Options

So I've decided to post on a bit of a rabbit trail today, partially because I promised a friend I would e-mail her some information about gluten-free diet and I decided to kill two birds with one stone by blogging about it as well!

In today's world, many of our foods are contaminated by common allergens: wheat, soy, dairy, eggs, and corn are just a few examples. Others include nuts, chocolate, tomatoes, certain kinds of fruits, as well as natural and artificial sweeteners. Walk into a fast-food restaurant today and try to find something that does not contain one of these allergens and you will likely be able to find something. Try to find something free of two of these allergens and the task is close to impossible.

Thankfully today's world's food choices are wider than a fast-food restaurant! Most grocery stores (and even places such as Walmart and Target that sell more than just groceries) have a small or large gluten-free section. These selections will oftentimes include crackers, cookies, chips, pastas, cereals, breads, bread-product mixes, waffles and pancakes, and varieties of gluten-free grains. If you have a corn allergy you will need to watch that corn has not simply replaced wheat in some of these products, but you can generally find what you need or want. I could go on and on about the variety of gluten-free products you can find, some ready made, some in kits. Pizza crusts, ready-to-bake pizzas, muffins, frozen burritos, granola bars... you name it, I can help you find it.

The trouble with some of this is that all these foods (even some organic products) are just as processed - if not even more so - as their gooey-gluten-infested counterparts. So, you can eat gluten-free one of two ways:  naturally gluten-free, or processed gluten-free. Examples would be, making a toasted sandwich on gluten-free bread for lunch, or baking a potato and eating that with a side of meat and some other condiments. It all comes down to personal preferences, nutritional convictions and education, and price-range. Eating naturally gluten free (rice, potatoes, and vegetables instead of breads and pastas) is not only cheaper, but also better for you. There are dozens of kinds of potatoes, beans, rice, and lesser-known vegetables that taste great once you find your favorite ways of cooking them. Here are a few of my favorite ideas:

  • White jasmine long-grain rice (naturally white, not bleached) with Cuban-style black beans
  • White jasmine long-grain rice with Jamacian-style red kidney beans
  • Cilantro-lime rice with refried beans, tortilla chips, and fresh salsa
  • Spanish-style rice with beef and tomatoes
For potatoes, I usually eat them with pan-sauteed chicken breast or pan-sauteed turkey burger. (Aldi has bags of frozen chicken breast, and I found a package of turkey burgers at a local fresh market.)
  • Roasted sweet potato with coconut oil and honey
  • Diced sweet potatoes and beets, tossed in olive oil, salt, and pepper, and baked
  • Salt potatoes (boiled in a salt-water brine)
  • Grilled potato fries (you can use a crinkle-cutter blade and do these on a counter-top grille if you like)
  • Pan sauteed potatoes (regular or sweet) with onions (yellow, sweet, or red)
  • Baked redskin or Idaho potato with coconut oil, honey, salt, and pepper
  • Baby or new potatoes, boiled
I'm usually a raw-veggie-dipped-in-ranch sort of person, but when you can't have ranch dressing, you become creative with some new ways of eating vegetables.
  • Celery with almond or cashew butter
  • Celery, carrots, and peppers with humus
  • Roasted broccoli, cauliflower, and Brussels sprouts (chop broccoli heads into bite-sized pieces like you would serve on a veggie tray. Toss in olive oil, salt, and pepper and roast on a cookie sheet in the oven at 375* F for 30 minutes until tender-crisp)
  • Bake beets in a glass pan, also tossed in olive oil and seasoned. Goes well with sweet potatoes and onions baked in the same way.
  • Asparagus or green beans sauteed in oil or water with garlic and onions
  • Steamed broccoli seasoned with salt, pepper, and lemon juice (I think this is tastier than the usual Parmesan cheese topping now!!)
  • If you can still have dairy, but can't have gluten-containing products such as pastas, try replacing noodles with cauliflower or spaghetti squash. I have tried spaghetti squash, and know someone who has made a modified beef stroganoff recipe and served it over cauliflower instead of egg noodles. I would like to try this some time when I am allowed to have dairy products again. 
  • I'm not a fan of spinach as a general rule, but I do like it steamed with salt and pepper, sometimes olive oil or garlic as well
One of the trickiest things about going gluten free is snacks and meals on the go. Here are a few ideas for both of those.
  • Gluten-free crackers with your favorite nut butter, cheese, etc.
  • Rice cakes dipped in hummus
  • Fruit, such as apples, grapes, bananas, oranges, etc. Certain ones are also good with nut butters.
  • Sprouted (soaked) almonds, other kinds of nuts
  • There are some great gluten-free bars available, such as Larabars, made from just a few ingredients. My favorites are blueberry and cashew cookie. These are my middle-of-the-night life-savers. A few times I've woken up quite early, starving, and having one of these by my bed saves me from having to venture downstairs to get a snack from the refrigerator. They are kind of tricky to find, but I found them at Wegmans in Erie. Whole Foods Coop also sells them (they are more expensive there). Some Sam's Clubs and Costco's also sell them.
  • Tortilla chips and fresh salsa
  • Roasted, seasoned chick-peas. Best hot.
  • Popcorn! I just season mine with tons of salt. And, if you must have a butter substitute, a little melted coconut oil is alright. 
Worried about not being able to eat out? Here are a few recommendations and websites to help.
  • Gluten Free Registry.
  • Gluten Free On the Go.
  • Chick-fil-A - some restaurants advertise the grilled chicken nuggets, others do not. You can also request chicken strips grilled, or order just a char-grilled fillet. Obviously fruit cups are gluten free, and I don't remember if the fries are, but they have a fantastic nutrition guide with all that information that should be available at the restaurant. 
  • Five Guys - you can order your burger without a bun, but I recommend bringing your own bowl to eat it out of, and I also recommend ordering messy condiments such as ketchup, mustard, and relish on the side. Getting all of that mess inside foil just requires too many napkins.
  • Moes, Chipotle, or Qdoba - I love a good burrito, but I've had to give up having it in the tortilla. Most places will just give you the burrito ingredients in a bowl. I think it's called a naked burrito. 
  • Olive Garden - I hate going here with my family because I always want the bread sticks and the pasta looks soooo good! However, some of the soups (the zuppa tuscona is my favorite) are gluten-free, so you can always fill up on soup and salad.
I was specifically asked about brand recommendations by my friends, so here are some. 
  • Gluten-free oats: I buy in bulk from the Whole Foods Coop in Erie. They have both organic and non-organic available.
  • Gluten-free bread: I buy Glutino Fiber Bread from Wegmans and keep it in the freezer and toast slices as I need them. I have tried a white rice bread from Udi's, which is commonly available wherever gluten-free products are found. I was trying to make gluten-free, dairy-free grilled cheese (riiiiight). So I used this bread, a soy-based cheese replacement, and grilled it in a pan in coconut oil. I was NOT a fan of the cheese, and the bread seemed to get soggy quickly. The texture is smoother than the fiber bread, but I still prefer the fiber bread anyway. 
  • Gluten-free crackers: I found Mary's Gone on my most recent trip to the Coop. The are made primarily from seeds and have a strong flavor, but they are good with almond butter or goat cheese on top. 
  • Gluten-free pasta: I recently tried a quinoa/corn pasta that I found at Giant Eagle. I have tried Tinkyada brown rice pasta (elbows as well as penne). I was not a fan of the gummy-texture. The skinnier the noodles, the better they taste, it seems. 
  • Gluten-free cereals: probably the easiest and cheapest cereal is rice chex, corn chex, or plain cheerios made from oats. I have tried some gluten-free cereals from Glutino, but I didn't like them and didn't think it was worth it to pay that much. 
  • Gluten-free flour alternatives - a brand I would recommend is Bob's Red Mill. I have tried their rice flour before, but I know they have many, many mixes, flours, and other items. 
  • Nut butters: Justine's, Maranatha, or in bulk from Whole Foods
Just a few assorted tips, some gluten free, some for other allegies...
  • Adding xantham gum to a recipie with your gluten free flour can help the taste and texture
  • Don't try using egg-replacer to make egg-free brownies. I'm not sure how it can be done. I'm sure it can, but egg-replacer is NOT the way to do it! =)
  • You can find coconut and almond yogurt in some places (I found it at Whole Foods Coop, and I'm sure Wegmans carries something similar). The brand I tried for almond yogurt was Amande, and I have heard the So Delicious makes a pretty good coconut yogurt. Amande was not organic or anything. 
  • Of soy, rice, flax, and almond milk, my favorite by far is flax milk. However, it is difficult to find, so I usually end up getting rice milk (Rice Dream brand). It tastes similar to skim milk in cereal, but it's still difficult for me to drink a glass or have some with cookies. It's just not quite the same. 
  • Coconut oil makes a great substitute for butter, and it is very healthy for you. Depending on which brand you get, it doesn't really smell or even taste like coconut! Usually we by Spectrum, which is an Organic brand, but if there is a sale on something else, we will sometimes change to a different brand. These come in glass jars or bottles, which is a blessing, because coconut oil will often harden, but can be melted again. I usually boil some water and pour it into a glass bowl, set the coconut oil in the hot water, and wait for it to melt so I can use it easier or pour it into recipes or dishes.
Finally, a few ideas of where to find gluten-free foods.
  • Health food stores (such as Whole Foods Coop in Erie)
  • Whole Foods (an actual grocery store, not to be confused with the coop mentioned above)
  • Giant Eagle
  • Krogers
  • Meijer
  • Trader Joe's
  • Online (Paleo bread, Larabars)
  • Farmer's Markets
I hope this has been helpful to someone out there!! :)

Tuesday, October 30, 2012

Appointment Review

Summary, in case the medical details bore you:
  • Good appointment with Dr. Conley by phone yesterday
  • Valtrex update - will remain on it until Christmas
  • I'm not gluten intolerant (yet) but I have high sensitivities to gluten and so I'm officially GF (gluten free)
  • I have some bloodwork coming up this Thursday
  • I'm going to write a novel. This November. Yay for NaNoWriMo!!!

Yesterday I had another phone consultation with Dr. Conley. I'm getting rather used to phone doctor's appointments, I think. I set up the desk with my binders of test results, other paper information, all my current supplements (so I can update him on any changes), and my computer as my own personal researching center. Today's appointment I had a lot of good news for him since my October 2nd appointment. I told him about Progressive Medical Center and Dr. Agolli and the vitamin IVs and how much better I am feeling now. After I'd told him everything he said, "Well, whatever works, that's what we'll do!" If it turns out that I need more IVs, I can go back to Atlanta for more treatment. Dr. Conley thinks it is likely that the IV solution was saline (salt) based, which increased my blood pressure and helped take care of some of the other orthostatic symptoms, and the vitamin B increased my energy levels.

Although I've been feeling better, Dr. Conley thinks I need to be on Valtrex at least until Christmas. Possibly after the current round is finished, I can switch from Valtrex/Valacyclovir over to Acyclovir, which is a little bit older of an antiviral drug and a little less expensive. I still want to do some research on Phoenix Rising about the difference between the two, so I might blog about that later.

The saliva test revealed some interesting things. First, my adrenals are actually not in too bad of a condition. Second, my saliva shows high gluten antibodies (indicating a possibly food allergy or intolerance) despite the fact that my blood does not display any adverse reaction to gluten. In Dr. Conley's experience, saliva is an 'early indicator' of gluten intolerance. There has been no permanent gut damage, but if I were to continue eating gluten, it is possible it could cause some real problems down the road. So, looks like I'm gluten free for good. I'm thinking about blogging about some gluten free brands and food options soon. Let me know if there is anyone out there interested in hearing anything specific on that!

We also talked about a blood test useful in diagnosing how well my natural killer cells are functioning. (I don't remember what those are or what they do... sorry.) When I had my first round of bloodwork done the lab ran the wrong test. So, I called the supervisor and it took about two weeks to make sure the right test would be done. It was drawn again last week, but something happened that contaminated the specimen, so the lab called me to come in yet again for this test on Thursday. I just hope this is the last time for sure!! If those come back low, there is a very effective way of raising natural killer cell function by as much as 200%, and it is natural and has no side effects. Whoop-de-doo! Already ordered some of that, because it sounds like even if they come back just fine, it wouldn't do any harm to take them anyway, and it could help my struggling immune system.

I am looking forward to my time of recovery. It is almost November, and that means that NaNoWriMo is almost here!!! I participated in National Novel Writers Month in 2010 when I was recovering from mono. I'm looking forward to now participating in it as a recovering CFS/ME patient. If you are friends with me on Facebook, I will be posting photos daily with a word count update. If not, I will sometimes probably post updates here. Just don't count on as much blogging. I'm going to be writing 1667 words a day at least, so I don't know if I'll even want to blog!

Well, I think that's about it. Have a fantastic day, y'all! :)

Monday, October 29, 2012

More Healing Hints

(1) Even more ability and willingness to socialize! Last week my mom and I went shopping for bathroom accessories (the actual remodeling will begin next week!!!), I went to two soccer games (okay, one was at the Y, but...), and my likkle bru-vah's youth rally.
(2) Starting to be able to sing sometimes. Or at least lip-syncing, if I'm not actually singing. Usually while I'm by myself and feeling a little on the crazy side.... :) Haha, I'm doing a music research problem for my friend, and I find myself dancing along, playing air guitar, and being generally ridiculous. It's fantastic, really.... :) There used to be certain kinds of songs I couldn't listen to when I was tired because they would make my heart race or blood pressure go up, but now that doesn't happen anymore either.
(3) Enjoyment of old hobbies, such as reading and writing letters, is coming back. Beth, your note is finally written and in the mail!
(4) Two short walks while we had some good weather last week.
(5) Ability to maintain and renew friendships. It's been so great to spend more time on the phone, writing e-mails, writing notes to those who I correspond with by mail, etc.
(6) Feeling like I could start a job soon, at least in the afternoons a few days a week. Not ready for full time yet, but soon I will be!
(7) Not only loving food, but helping out in the kitchen (my mom, or making myself food since I require a special diet still).
(8) Last night I had a really bad headache - the worst one since my headache that started after my appointment with Dr. Conley - but it went away with sleep! Yay! No more Horrible Horaces!
(9) People say I'm looking good... and I don't have to tell them I'm faking it. I don't feel like I really have an invisible illness anymore, because I am truly feeling so much better.
(10) I can't wait for November to get here, because it means my brother Ian will be home soon, I can't wait to make sweet potatoes for Thanksgiving, and I am looking forward at being crazy and attempting to write a 50,000 word novel for NaNoWriMo.

I have a phone consult with Dr. Conley this afternoon. What are you folks doing this Monday? :)

~Camille

Tuesday, October 23, 2012

The Big Green Monster

My first exposure to Lyme's Disease dates back to early childhood. When we first got our pets (Kep and Sandy) and were taking them to the vet, I remember seeing posters of a big lime-green monster with the words "LYME'S DISEASE" printed in all caps. I think it was supposed to be a picture of the Lyme-causing bacteria, borrelia burgdorferi. At that time, I thought it was something only animals could get. Then when I went to North Carolina for my year at the Mission, my aunt cautioned me to be careful about dressing with long sleeves and tucking my pant legs into my socks to avoid ticks. (I didn't... but I never remember seeing any ticks either. Interestingly, the deer population of Graham County, North Carolina is 0, but that doesn't necessarily mean there aren't deer ticks or other Lyme-carrying creatures, according to Dr. Mercola.)

Some have asked me about the possibility of Lyme's Disease as a root cause or contributing factor to my illness. I have had two Lyme tests done (April '12 and October '12). The results of the first were negative, and I'm pretty sure I would have heard back from Dr. Agolli's office by now if the second one was positive, so I think it's safe to assume both were negative.

But does that mean anything? Apparently not. Most Lyme tests come out as negatives - some say as many 90% - but it is believed that many of those patients do in fact have Lyme. Lyme is now being diagnosed more based on symptoms than on blood test results.

It is possible for me to have Lyme and ME/CFS at the same time. When I asked my friend Heidi (to whom I refer to affectionately as my medical genie) to explain this relationship between Lyme's and ME/CFS, this is what she wrote back:
Here's my personal experience with the whole Lyme thing...

Among the ME/CFS community, it's often accepted that you can have both Lyme and ME/CFS, so getting a Lyme diagnosis doesn't necessarily change anything.

Among the Lyme community, it is known that the diagnosis of Lyme is often given even in the absence of any positive Lyme test, and they tend to be of the opinion that all severe ME/CFS cases are Lyme's.

So you can see how everything gets murky.
Yes... I can....! It is so tricky! To add to the trickiness factor, Heidi tells me that you can also get Lyme from a spider or mosquito bite in some rare cases. Hmm.... I've never been bit by a tick, but I've sure as shootin' been bit by both spiders and mosquitoes. Lyme is not completely ruled out... however since I am seeing so much improvement with treating the fatigue side of my illness, I still believe it is fair to conclude it is not a viable option for an underlying cause of my illness.


In closing, I want to offer a few resources about Lyme's Disease that I have found to be informative and helpful.

Documentary about Lyme's Disease (keep in mind - sometimes documentary producers have a tendency to pick out the worst case scenarios):
http://articles.mercola.com/sites/articles/archive/2012/10/13/under-our-skin-documentary.aspx

Doctor's who Specialize in Lyme's Disease:

Have fun tracking down that big green monster!

Monday, October 22, 2012

Feeling Frodo-ish

Photo Credit: Accessed Online through Google Images

How do you pick up the threads of an old life?
How do you go on when in your heart you begin to understand, there is no going back?
There are somethings that time cannot mend.
Some hurts that go too deep... that have taken hold. 
From "The Return of the King"

Sunday, October 21, 2012

Banner Day!

Yesterday was a banner day, energy and productivity-wise!!! Yay!! I woke up feeling tired, but nonetheless refreshed, after a not-so-great night of sleep. I told a friend, "I'm going to stay in my room and probably in bed alllll day and rest." About a half hour later I was up, had taken a shower, and was running errands with my dad. Friday and Saturday were sort of exciting for me, because I stocked up on gluten food that I can eat! I got some almond and cashew butter (cashew butter is amazing; it tastes like a candy bar!), some quinoa pasta, a soup to try, turkey burgers, goat cheese, and maybe one or two other things I'm not remembering at the moment. Tons of veggies, too, since those are easy to make and healthy.

Anyway, back to yesterday. In the afternoon (after my lunch of apples with my new nut butters and a few other miscellaneous items) I prepared and sent some medical forms out and helped my dad with some financial stuff. This year since I have some spare time I told my dad I would make an Excel spreadsheet for him so that it simplifies his tax processes at the end of the year, which makes filling out my FAFSA a whooooole lot simpler!

Then, *drumroll* I helped my mom make dinner. We were shuffling pots and pans around so many of the burners it wasn't funny!! The menu was barbecued chicken, salt potatoes, and fresh sauteed green beans. The hitch was we didn't have any barbecue sauce that wasn't loaded with high fructose corn syrup. Soooo... I made ketchup using a recipe from Skinny Taste, and then used my homemade ketchup to make barbecue sauce. (I used this recipe, but I had to modify it insanely. I didn't have the ingredients to make the sauce from Skinny Taste, although I know it would have been better if I had.) The salt potatoes turned out fantastic! I'd never heard of salt potatoes but apparently they are a trade-mark food of Upstate New York. You use about 12 ounces of salt for 4.25 pounds of potatoes and boil the potatoes in saltwater until tender. If you carefully lift the potatoes out of the saltwater, the salt will dry on the potatoes and coat them. Most amazing potatoes ever!! Deliciously salty on the outside, and slightly bland but oh-so-creamy on the inside. Erie County Farms sells bags of them if you are interested. Oh, and the salt comes in the bag, so you don't need to measure out your own salt *cough* like I did before opening our bag...... =) And then after dinner, I made cookies for my dad. Apparently it's the best batch of cookies I've ever made... but I can't eat any because I am gluten, sugar, and dairy free for another 25 days :(

After all the activity of the day yesterday, I've been more tired today than I have been in a few weeks, but I'm sure with rest I will rebound. :)

Finally, I have a shameless plug to make. I'm a member of a site called Scholarship Points. I haven't used this site too much to be honest, but I recently started paying attention to it and recognized that the system is a lot easier to use than a number of other ones. How it works is each time you log in and complete activities, you earn points. If I refer people and they visit or join the website, I earn points. If you join, I'll be overjoyed, because I'll earn 225 points, hehe. But today all I am asking you readers to do is to click the link at the end of this post, and for every click I will earn 25 points. That shouldn't be too hard to do. So, all you've gotta do is make a few minuscule movements with your fingertips. Click the following link so I can earn points, please! I'm spending them on entering a $10,000 scholarship award drawing =) http://bit.ly/SYyRXg

Thursday, October 18, 2012

Sometimes....


Sometimes every one of us feels
Like we’ll never be healed
Sometimes 
Sometimes every one of us aches
Like we’ll never be saved
Sometimes
--David Crowder Band

You know the feeling: the heavyness, the helplessness, the hopelessness.... It's impossible to shake. "It will all work out in the end," sounds like such a cliche... or maybe even an insult. "When? Why?" Not just "When will I be better?" or "Why am I sick?" No, the pain drives us to asking bigger questions than that, because thanks to support groups and the Internet, we know we are not alone in this suffering. "When will the world be redeemed? Why is their pain and suffering?"

I don't know. I really don't. I don't understand any more than you do.

But I know the feeling of healing... the first breath of spring, and healing....

I know that somehow, some day, it will end. Sometime.

So don't give up. Keep on going. Persevere. Be determined. Aggressively pursue healing with every ounce you have, even if it isn't much. Surround yourself with people who will lift you up, help you, and give you hope.

Don't. Ever. Quit.
Don't. Ever. Give. Up.

P.S. Beth - this is for you. ♥

Tuesday, October 16, 2012

Healing Hints

I promised some of you I would blog about the ways I can feel healing beginning to happen. This is a brief post with 10 ways in which I feel healing taking place.

(1) Cold symptoms - stuffy at night. You might not think this is a sign of healing, but to me, it shows that my immune system is beginning to funtion normally by fighting 'normal' sick issues.
(2) No brainfog!! Or when it's around, it does go away with rest.
(3) Improvement with rest. That seems like such a simple thing, but it is a function of the body that is somehow broken during CFS/ME.
(3) Ringing in ears has stopped. Wahoo! That was getting irritating....
(4) Not loosing my train of thought as much, not forgetting what I was saying, not searching for words.
(5) Trouble sleeping at night after electrotherapy. When my body's electrical pathways are properly stimulated, they do in fact respond correctly.
(6) Able to have lights on at night. I was on Skype last night and my friend could see me instead of just hear me! :)
(7) Significantly reduced stress levels. I feel at rest without having to naturally work on breathing or use some kind of somatic system. But, when I do feel stress, I am more aware of it and able to deal with it properly.
(8) Slight increase in ability to multitask. (Slight.)
(9) Ability to socialize is coming back. There was a point a few weeks ago where if you put me with people in a social setting, I would react very negatively. I didn't know what to say and felt very uncomfortable and easily overwhelmed. Many times I would just find a place to hide and cry.
(10) I love food and eating again. It feels normal, healthy, and natural.

All thanks to Dr. Agolli and the incredible staff at Progressive Medical Center in Atlanta, Georgia!

Thursday, October 11, 2012

Wednesday, October 10, 2012

"All the cool kids pass out."

My first appointment with Dr. Agolli went well. He has been very gracious to me in providing excellent care. Progressive Medical Center is a fantastic clinic that offers excellent, professional, holistic care, and I am very happy to be a patient there.

From looking at my current bloodwork results and hearing all of my symptoms, Dr. Agolli is concerned with my adrenal function, extremely low iodine levels, and the possibility of Lyme's disease. Soon I should be able to start iodine and adrenal supplements (I was taking some from VitaCost, but I ran out/went off them for a while). He ran another blood test for Lymes (I was tested with a negative result in April), so hopefully I will find out the results of that soon.

As I mentioned earlier, part of the treatment from PMC involves IV treatment. I had my first IV Monday and have had one every day since. Yesterday's IV was a bit of an adventure :) I don't think the IV needle went in straight or something. Whatever happened to it, the needle was causing pain in my arm. I told the nurse, but I also began to feel hot all over, and my hearing started to fade. I could tell I was passing out. So I got to smell smelling salts for the first time. Be warned, they are nasty buggers! Then Laura, who is the best nurse ever next to my dear friend Jill, gave me a cotton ball full of essential oils, and after that I happily sniffed away while my IV dripped. I couldn't help but laugh when another patient remarked, "Yeah, all the cool kids pass out," while the nurse was removing his IV. The things you overhear in the IV room sure are strange!

Tomorrow I have another IV as well as a follow-up meeting with Dr. Agolli. Over the weekend I have some more at-home tests to do, one more IV on Monday, and then, sad to say, my short time at PMC will more than likely be over.

And now the million dollar question: how are you feeling, and are the IVs working? The answer? I believe they are working, and I am feeling better. I still notice some of the POTS symptoms on occasion (the dizziness after standing up, etc.), but last night I felt energetic for the first time in a while. Yay! :)

I also attribute some level of improvement to the Valtrex. Brain fog is settling down, most notably. Another Yay! :)

And, as always, I attribute most improvement to my wonderful friends who have helped and supported me during this journey. You're the best.

Monday, October 8, 2012

Appointment Today

I know what you're thinking after reading the post title. But you just had an appointment last week! Yeah, I know; I did. And here's another fact. I'm seeing another new doctor. In my previous post I briefly alluded to Dr. Agolli, a naturopath who treats using vitamin IVs. He is the doctor I am going to see today. I am hoping the IVs will decrease some of my POTS symptoms and give me some more energy. I'm not certain if I'll be receiving any of those today, but it's possible. I have a feeling he'll want to run some other tests before starting that treatment. So this weekend I filled out another long medical history form, and will be going over my two-year story yet again. I think I'm getting rather used to this.... :)

Just to clarify, I am not seeing Dr. Agolli because I disagree or am dissatisfied with the care I am receiving from Dr. Conley. I am willing to try anything I can that I feel will promote healing, and after research, this is something that could possibly help, so I will pursue where ever this natural track takes me. What it can help with, I will take; what it cannot help with, I will seek help with from elsewhere (as I have already been doing). I will probably not be able to see Dr. Agolli more than a few times during the remainder of my short stay in Georgia, so this will be a temporary treatment - but hopefully one with long-lasting results.

Any questions, just leave them below as a comment and I will reply!

Wednesday, October 3, 2012

Georgia on my Mind

Yesterday I had a follow-up phone appointment with Dr. Conley. First we reviewed my symptoms. He was encouraged that I haven't had any more of the 'spasm' episodes of paralysis and that the Valtrex finally seems to be helping my energy levels. We went over my continuing orthostatic symptoms (low blood pressure, high heart rate) and he recommended that I monitor both of those on a daily basis and see what they do, so I guess I'll be getting a blood pressure cuff. 

Second we reviewed the bloodwork results (from those 20 vials I had drawn over the past three weeks.....!!) and everything looked pretty good. Some levels weren't as low as he thought they might be, which could be good. But that could just be because I am young and so levels are higher than a range of normalcy, but for me at my age they are still lower than they ought to be.

Third we discussed some blocks in my energy production. Although I'm taking 1.2 mg of vitamin B-12 daily (which is 20,000% the DV), my B-12 levels are low, so I'm taking more B-12 lozenges and going to start a CoQ-10 supplement as well. All of my other medications and supplements are staying the same until further notice. 

Towards the end of my appointment, Dr. Conley reitterated something I've been hearing a lot from Heidi recently: do whatever promotes healing. So, part of my prescription is lots of comedy/romance movies ("No 'Murder on Elm Street'!"), light reading, and light exercise when I feel up to it. 

In keeping with that prescription :) I'm currently on vacation in a place where I have tons of free time, clear and warm sunny days, and a nice patio outside to read. I am very thankful for Uncle Bob and Aunt Linda allowing me to stay with them in Georgia for two weeks! The sun and pool-side reading this morning was so relaxingly wonderful. 

Aunt Linda has been telling me about a naturopathic doctor here in Atlanta, Dr. Agolli, who offers IV vitamin treatments. Interestingly enough, one of the first CFS/ME doctors I found in Indianapolis also offered IV vitamin treatments (this would be Dr. Guyer, for anyone who is interested to know). From the little research I've done, I found a study that says vitamin C IVs seem to help reduce fatigue about two hours after they are administered and the effects last about 1 day. That's not too impressive, but I also discovered that vitamin IVs have seemed to help some CFS patients who have POTS (yes, please!!). So, although my research has been limited and my findings not very conclusive, it seems vitamin IVs have some helpful benefits and no known side effects or drawbacks (if you can stand the needles and aren't adversely effected by plastics). Will keep you posted! :)

Saturday, September 29, 2012

"Well, FINALLY, Turner and Hooch!"

Well, I know the last update wasn't too promising, but I think the Valtrex is finally starting to make a difference energy wise! I now have the longest running streak of being out of the house I've had in a very long time - possibly since July. Monday, Tuesday, Wednesday, Thursday, Friday, and today, Saturday! Some days twice! I still tire out easily (in fact I'm quite tired right now....) but I'm still beginning to feel the slightest big better. And my vacation is almost here. I'm looking forward to seeing my brother, grandma, and some friends from the Mission.

P.S. If you're wondering what the heck the title of this post means, ask Stefan. He'll get a kick out of it. ;) Or just watch my amazing cousins' film, The Fall of Rome, by Tool Films, on YouTube. Trust me; it's the craziest mash-up of stolen plots and lines you'll ever see. Ever.

Thursday, September 27, 2012

Valtrex Update

A number of people have been asking me how I have been responding to the Valtrex so far. To be honest, I've seen very little improvement. I think at this point my body is almost too distracted with meeting other needs and dealing with other issues to respond on any level yet. I am looking forward to a much-needed vacation in the near future.

In the mean time, I have been trying to pursue a philosophy of "avoid anything that is not related to healing." Note that I said "trying." Every day seems to have a few exceptions. Tuesday it was a trip to Lowes to pick out furnishings for the bathroom remodeling project. Yesterday it was a much-needed fall shopping trip to replace my too-big wardrobe with things that fit and are warm (yay!!). Today I need to catch up in my online class, since I've gotten a bit behind. The past few days have also been sleepless and full of emotion. I think I've cried as many hours as I have had dry eyes. I think I've been awake as many hours as I have slept, but felt exhausted regardless of being awake or being in a dream. My body aches for complete healing.

Tuesday, September 25, 2012

Forecast

All day, every day.... :)
Stolen from this Pinterest board.

Once the fog clears, maybe I'll have something sensible to write. Good night!

Monday, September 24, 2012

"What happened?" band-aids

Photo source: a Pinterest board

As a somewhat snarky person, I found these band-aids to be quite entertaining. What would be on your band-aid explanation? "I walked half way to a friend's house, and now I can barely walk!" would have been mine yesterday. As an aside, I'm very impressed that I made it that far; I haven't been out for a walk in almost two months, and in one go I walked forty-five minutes. Granted I was crying and could hardly breathe most of the time, but I was choosing to ignore that part of reality.....

Sometimes I think we just need one of these band-aids to wrap around ourselves that says "LIFE."

Saturday, September 22, 2012

A Story That Will Make You Cry

Every 30 minutes a child is born who will develop mitochondrial disease by age 10.
Mitochondria are responsible for creating more than 90% of our body's energy.
The disease primarily affects children, but adult onset is becoming more common.


How's this for an invisible illness? My heart goes out to this family....

Photo source: www.cnn.com


The Invisible Disease That's Killing Our Son


Thursday, September 20, 2012

"It must be dull to be well..."

I remember now that one of the questions on the 30 things list I made about my illness was "what gadget can't you live without?" I answered my battery powered lantern, which makes it possible for me to have any kind of night life. I think I should mention in this post that my cell phone also has a remarkable effect of keeping me sane by connecting me with the outside world.

Last night I was blessed to be on the phone quite late with my wonderfully amazing friend Heidi. At the end of the conversation, we had just as much to talk about as we had when we'd started over two hours before. I definitely can't stay on the phone that long with most people, and I've come to realise that it is because those other people are well, whereas Heidi and I share the bond of a common illness. Which gives us a lot to talk about!! 

It must be dull to be well. Your conversation never comes close to approaching retro-viruses (which aren't viruses from the 1950s, mind you), the chemical load your body is bearing, discussion of the latest medical research, politics relating to the FDA and CDC, or where to buy an organic hair conditioner product. You would never think of reading medicine and cosmetic ingredient labels over the phone to one another. I shouldn't think either of you should be discussing custom earplugs or colored eyeglasses. Besides conversation topics, your selection of reading material is not nearly as broad as ours. We have fun books like The Perrin Technique, or Osler's Web to catch our eyes and hold our attention as we read about one outbreak of disease after another, or the body's fluid drainage system. You lack a vested interest in human anatomy and physiology such as we have. There is no reason you should be up past midnight discussing cough syrup, whooping cough, and the tiny hairs inside your lungs. But we have all the reason in the world. We're not medical students, so we're not graded for it, but we care to know anyway, simply because one never knows what knowledge one will need about the human body. 

It must be dull to be well. We ill people have so much more to talk about, think about, read about, and learn about. 

Wednesday, September 19, 2012

Allergies

You're sitting in a room. The doors and windows are closed. Everyone else is having a great time, chattering away about this new fashion or that person's week. Everyone... except you. The lack of ventilation is becoming stifling. And all the sudden, you can sense what is about to happen. Your throat feels tight. Your skin itches. Your eyes become puffy. You. Know. You. Need. Out.

Maybe it was caused by mold. Maybe it was Mrs. Jones's new perfume from New York City. Or maybe it was the person next to you who owns cats, dogs, rabbits, or something else you were allergic to. Or maybe it wasn't airborne. It could have been the baked goods Mrs. Henry brought to share with everyone. Whether its flour, nuts, soy, eggs, or milk, there was bound to be something problematic in that delicious sweet bread. 

Allergies and sensitivities are difficult to handle. No one wants to blatantly advertise sensitivities to things that 'no one else has a problem with.' It can make certain situations just awkward. For a few years now I have had to be very careful or haven't been able to have anything made with refined white sugar or high fructose corn syrup. That eliminates ice cream, cookies, cakes, candies, pies, desserts, breads, juices, ketchup, barbecue sauce, pasta sauce, granola bars, cereals, carbohydrates, and most snack foods. What's left to eat, you ask? Well, fruits, vegetables, whole grains, beans, and meat are usually fine. But those things aren't exactly party food. It is awkward. I'm not allergic to sugar, but if I eat it, I become tired, dizzy, disoriented, see spots, start twitching. It's not worth it for me to eat those things, so I don't. 

However, my reaction to sugar is usually self-inflicted. The girl sitting in the room whose throat is beginning to close because of the cat dander on Miss Millicent's sweater from her grey-eyed furball Tootsie is another matter entirely. When it comes to airborne allergies carried in on clothing and personal articles, we would all do well to look out for the comfort of others. Growing up with a dad who is allergic to cats I think I became more used to being careful. Now that my friend Hannah (who is the person I spend more time with than anyone outside of my family) is also allergic to cats, I have been even more aware of how dander has a tendency to remain alive, active, and problematic for up to six months. 


I could write more, but here are a few brief tips for helping our friends with allergies and sensitivities avoid reactions to invisible contaminants such as food, our furry friends, and fragrances. 

1.) Keep pets away from coats, purses, and clothes that will be worn out. Even if there is no visible hair on your clothing, the dander has a way of getting into things and not coming out in a hurry. 
2.) Be cautious about wearing strong perfumes, scents, body sprays, or hairsprays - especially if you know someone might be sensitive to it. Better yet, refrain from wearing it at all! Someone probably is bothered by it and you just don't know. 
3.) Instead of placing the responsibility on a person who might have allergies to find out what hidden ingredients are lurking in a treat or dish, bring a recipe card along with you, or alert the group of all ingredients that could possibly be problematic. Make sure to check a list of common allergens online. Sometimes people without allergies aren't always aware of how many foods cause reactions, such as some fruits. 
4.) When it is your turn to bake something, ask ahead if anyone has an allergy and make something special just for them, or make the whole recipe allergen free.

Tuesday, September 18, 2012

POTS

Have you ever heard of POTS? No, not a flower pot, not a kitchen pot, or the drug pot - POTS. It stands for postural tachycardia syndrome.

Photo Credit: self-made, using www.pixlr.com.

If you remember my post in August titled, 'Recumbency' and what I described there as orthostatic intolerance, you have a tiny slice of what POTS is. It is the dizziness, the difficulty of doing anything while sitting or standing, but with a new component: rapid heartbeat. 

After a number of sleep-deprived nights, I noticed my heartbeat was faster and harder than seemed healthy. I counted my pulse, and found that it was a little over 100. During the day, it only became more elevated. The highest I know it got was 120, but a few times after that it was going so fast I couldn't keep straight what I was counting. (That was partially because I was so sleep deprived....) Now, several days and a few good nights of sleep afterward, at night or in the early morning, my heartbeat will be down between 72-76. If I sit up in bed for a few minutes, it will go up by 10 bpm withing a few minutes. (I tried this last night. Lying down heart rate was 72, after sitting up it was 86.) Over the past few days I've counted my pulse several times, and it seems to range somewhere between 90-110, depending on the day. 

I remember briefly reading this PDF on POTS (which I also linked to under Recumbency) so I read it again a few days ago. Before it made sense to me only so far as I identified with certain symptoms of orthostatic intolerance. Now I understand and can identify with much more, such as the blood pressure and heart rate moving in inverse directions once I stand up. It's interesting to feel the processes being described in the paper happening in my body.

This doesn't seem to be as much of a problem now that I've been sleeping better, but I know POTS is something many people with CFS struggle with and I wanted to blog at least a little bit about my experience with it.

What's you're heart beat like? :)

Monday, September 17, 2012

Hard Thing: Breathing

Most, if not all of you, are probably familiar with the Rebelution and their theme phrase, 'Do Hard Things.' It means just what it says; you should do hard things instead of easy things. Doing hard things is something I've struggled with over the course of the past several years, even before I became sick, and since 'doing hard things' is so imbedded into my brain, its a difficult thing to stop. My hard things are transforming before my eyes.

Breathing never used to be a hard thing, but through some self-discovery a few weeks ago, I realised that something so simple and basic as breathing was actually a hard thing for me. The process of a breath seems so simple, that it seems almost impossible to think a person could breath 'wrongly.' Inhale - pause - exhale - wait. Then repeat. Over and over again. Automatically. Unthinkingly, almost.

I realised that after I deeply inhaled, I would pause for a brief moment and then puff out my exhale with an inaudible snort-like action. Then I would breath in again, as rapidly as I had exhaled. This panting-like method of breathing was getting me nowhere. I'm not sure which is more remarkable - that I was breathing wrongly, or that it took me so long to notice it.

Breathing became a very hard thing. I had to work to self-correct this pattern of wrong breathing. I noticed that it was most difficult to breathe properly when I was under stress. A friend worked with me a few times over Skype on some relaxation techniques, and the biggest one (besides slowing down my speech and thinking) was breathing.

Now I enjoy breathing. I will sit still for minutes at a time and feel the rhythmic motion of the breath going in my nose, expanding my lungs, stretching my diaphragm. I will hold that breath, savor it, and slowly let it out. Its smooth now. It's automatic. It's not effortless, yet, but it is wonderful... enjoyable.

I love to breathe.

Sunday, September 16, 2012

Open Season

Blogging has been so sporadic! My apologies! I intended to blog a lot more during Invisible Illness Week rather than a lot less. Oh well. Now II week is over, but I hope to blog more in the next few days. I'm planning on doing a post later this week about an invisible aspect of illness (allergies and sensitivities) and how healthy people can help ill people who suffer from these kinds of invisible symptoms with very real complicating effects. Anyway, I'll save that for another post.

Today marks a week since I started Valtrex. Unfortunately, I had to stop it this week, at least temporarily. As my friend Heidi described it, here is a comic (without a picture. I'm not an artist. You'll have to use your imagination.) of what has been happening inside my body...
Body: AAAAAARRRRGGHHHH!!
Immune system: Hey! Look! The gun ban has been lifted - open season on EBV! Yeeeeeah!!
Body: AaaaaaaaAaaaaaHhhhhhh!
...or something like that.... :)

There has been so much going on inside my body through starting various treatments and trying various means of improvement. The Valtrex frees up certain parts of my immune system to fight the EBV and other things. Probably at least partially because of this, I've been 'normal person sick' for the first time in almost a year - and it's been intense. So I decided maybe my go-to advisor from PR was right and I should have waited to start the Valtrex after my body fought off the cold. We'll see what Dr. Conley says tomorrow when I call his office.

You'll have to wait until tomorrow to read about more of the self-discoveries I have been making and how I've been improving due to that.

Tuesday, September 11, 2012

I Spy Something White

Days 1-3 of Valtrex* treatment

My apologies for not having written sooner. I would have, but I've been sick. On Saturday night it started with a terrible sore throat. The stabbing pain plus normal insomnia kept me awake from 1:00 a.m. until after 6:00 a.m. The first thing I did after getting up Sunday morning was make myself a bowl of ramen and drink almost all the broth as hot as I could stand it. (Yeah... great nutrition, I know, but the hot saltiness felt sooooo good!) I had some reservations about starting the Valtrex that day as planned. A fellow CFS/ME sufferer from Phoenix Rising who has taken Valtrex for over a year noticed that Valtrex seemed to make his colds hang around longer so he advised that I wait until after the cold had passed. Against his advice (because I'm desperate to feel better all around! I've got work to do! :P)

I started the treatment on Sunday as planned with one gram in the afternoon. That night I didn't sleep well again and I was worried because I'd heard some people react to Valtrex with worse sleeping disorders than they had before. I took another gram yesterday afternoon and had a bit of trouble getting to sleep, but slept all night just fine. Hopefully it will stay that way with my sleep not being negatively affected.

Anyway, yesterday afternoon I spied something white in the back of my throat... two white somethings. White patches. That's a terrifying sight if you've ever had mono or strep. Since I had no other cold symptoms my first thought was, "I have strep throat.... Crap!" So we made a doctor's appointment for this afternoon. However, I am feeling much better now, both in the sickness (sore throat/cold) and illness (CFS). My hope is that the Valtrex is beginning to liberate my immune system from fighting the EBV and that is why I am feeling better in both respects. Today I've already taken one gram and I will take the other gram with dinner, and tomorrow I will probably increase to the full dosage of three grams daily. I cancelled the doctor's appointment since the white patches are shrinking and other symptoms are disappearing with basic home care. I'll keep you all posted!

*I'm actually taking the generic, Valacyclovir. Valtrex is just easier to type. :)

Saturday, September 8, 2012

What is it like to be you for a day?

One of the questions floating around with Invisible Illness Week coming up is, what is it like to be you for a day?

If I had to answer with just a single word, I think today that word would be "Frustrating!" I slept for almost 12 hours last night and still didn't want to get up when I was supposed to. Because of some events that happened yesterday I wasn't able to accomplish certain review work I wanted to do for my online class, and now my brain is unable to focus on the reading assignment for today, which means I'll have to make it up 25 pages of reading another day.

But just answering that question with "frustrating" wouldn't really be fair. It's kind of fun to be me, if you look at it in a different light. I got to sleep for 12 hours last night. Many people don't have that luxury. I also have the luxury of being able to stay in bed snuggled up under a quilt on this chilly Fall day others are working, doing chores, home improvement projects, or paying bills. And I only have one class, so getting behind on a day's work isn't that big of a deal because when my brain is working it doesn't take that long for me to do my homework.

But, to be fair, although most people are envious of what appears to be a lazy Saturday of watching Little House on the Prairie and lounging around instead of cleaning the bathroom, homework, or other activities, there is an invisible component to this day that most people don't understand. I'm not just ignoring the reading and putting it off because I want to be lazy. In fact, right now I am very irritated that I am not doing this homework. I'm not putting it off by choice, I'm putting it off because I must. Every time I look at the book, all I see are words dancing around on the page. If I try to put a bookmark under each line and move it down, that helps, but I'm missing so much important content its not worth it. My brain feels like it hurts (even though brains aren't 'supposed' to feel). There is pressure, tension, and pain. It isn't just a headache, and it is not going away with rest. If anything it is only getting worse.

So... you might wish to be me for a day... because you'd get to watch Little House and blow off your homework... but I might wish to be you... because you get to be active.

It's all how you look at it.

Friday, September 7, 2012

Heart's Cry

Just another post similar this one from the end of August. I've been finding this newly released track stuck in my head a lot recently. I think the chorus expresses very well the truth that all creation groans for redemption (Romans 8:19-22).


We wake in the night in the womb of the world
We beat our fists on the door
We cannot breathe in this sea that swirls
So we groan in this great darkness
For deliverance
Deliverance, O Lord

One line that particularly sticks out to me comes close to the end, "we cannot sing with these broken lungs." It might not mean a lot to you, but I absolutely love to sing, and one of the ways I can tell that this illness is still hanging on is that I haven't been able to sing for months. So while I listen to others sing and long to do so myself, I groan with all of creation.

Anyway... enough from me... listen to Andrew Peterson! I think this song will appeal to more readers than the last video I posted :)



Thursday, September 6, 2012

Feeling Invisible

Have you ever felt that you had a physical invisible need? I've felt invisible needs many times. While trying to simply stand in line during airport security. While trying to make the quickest escape possible without answering any questions. While trying to graciously hang up the phone on a person who just wouldn't stop talking, even though I'd insisted many times I needed to go. While trying to seek solitude, quiet, and peace.

What about emotionally? Sometimes we have invisible emotional needs as well. We need a hug, but everyone thinks we look fine. We need a shoulder to cry on, even though there's nothing really that's happened, we just need to cry. We need someone to listen instead of talk; to comfort instead of chide.

The problem is, invisible physical needs often feed invisible emotional needs. When we can't escape that physical situation, emotional trauma is inflicted as privacy is continually violated, requests are repeatedly refused, non-negotiables are compromised, and attempts at non-verbal or verbal communication seem to fail. And the body seems to have a back-log. If you don't deal with the stress and trauma of one situation, it spills over for days, weeks, months - ignored, but unresolved and still present.

Sometimes this invisible illness and invisible pain make us as individuals begin to feel invisible. I've been feeling that way a lot recently - invisible to the rest of the world. It's one reason I haven't been blogging. But when I feel that way, I am so thankful that I have friends (especially Isaac) who will support me, uphold me, and tell me they love me... and that I am not invisible to them. There's also a great song (called "Invisible" - how fitting) that reminds me of this. I've mentioned it before in a post (with two other great songs). I didn't post the video before, but since its almost Invisible Illness Week, I figured it was a good time. It might not be a style many of you readers will particularly enjoy, so I don't blame you if you don't listen to it, but please just watch the lyrics or look them up. Even if you have never felt this way, it might give you a little bit of insight into my world. And if you are a fellow invisible-illness friend... let me say what no one else may have told you... you're not invisible to me.


 

Sunday, September 2, 2012

What is behind the unpronounceable name?

Found this photo and thought it would be helpful in explaining what myalgic encephalomyelitis is by explaining what it means.


Most often I feel pain in my brain. I know that it is technically impossible to feel pain in the brain, but that's what it feels like to me, and I can't offer an actual medical explanation, but that is what it feels like. I have no doubt that many or most of my chronic headaches (the various generations of Horace) stem from inflammation of the brain and spinal cord. I also get muscle pain in my neck and back, which are usually held at bay through chiropractic treatments, icing, heating, and attempts at good posture.

Blessings on your Sunday and Labor Day tomorrow!

~Camille

Saturday, September 1, 2012

30 Things about CFS/ME





I'm following closely a social media campaign called Invisible Illness week, and I noticed this questionnaire on the website and thought it might be fun to fill it out. Hope you enjoy and learn a few random facts about me!   
  1. The illness I live with is: chronic fatigue syndrome/myalgic encephalomyelitis
  2. I was diagnosed with it in the year: 2012
  3. But I had symptoms since: 2010
  4. The biggest adjustment I’ve had to make is: listening to my body instead of pushing it, and cutting back on my academic goals
  5. Most people assume: that CFS just means that I'm tired all the time, but it's much more than that
  6. The hardest part about mornings are: feeling like a fly stuck in molasses
  7. My favorite medical TV show is: hmm... my favorite TV show is Fringe, but I don't really watch medical TV
  8. A gadget I couldn’t live without is: my battery powered lantern. I can't use regular lights after dark, but the lantern is enough light to see by, but not enough to hurt my eyes.
  9. The hardest part about nights are: knowing other people are usually out in the evenings having fun with friends, but I have to go to sleep early or am too tired to socialize. Plus insomnia. 
  10. Each day I take 28 pills & vitamins, soon to be 34
  11. Regarding alternative treatments: I am open to reasonable suggestions, provided there is a significant reason why I should consider it rather than just a slim reason it maybe could help. 
  12. If I had to choose between an invisible illness or visible I would choose: I think I would rather have a visible illness, but this might just be because the grass is always greener on the other side of the fence. Having an invisible illness is annoying because people don't really know how you are doing unless they ask, and sometimes I'm not in the mood to share, and that's hard to explain.
  13. Regarding working and career: it is impossible to work the kinds of jobs I have in the past, but I'm hoping that I will improve enough to start doing some things from home right now.
  14. People would be surprised to know: that I'm sick at all. 
  15. The hardest thing to accept about my new reality has been: changing my plans countless times because I'm not able to work or pursue my academic goals at the rate I thought I would be able to.
  16. Something I never thought I could do with my illness that I did was: do a sudoku in less than 10 minutes... but I did one in 9 minutes and 4 seconds! :)
  17. The commercials about my illness: don't exist...? But there are a few YouTube videos you can check out, such as this one
  18. Something I really miss doing since I was diagnosed is: reading extensively. 
  19. It was really hard to have to give up: eating sugar, because I have a huge sweet tooth!
  20. A new hobby I have taken up since my diagnosis is: resting and sleeping.
  21. If I could have one day of feeling normal again I would: wake up early, take a long walk with my dad, get my drivers license, drive to Indiana, and spend the day with my best friend.
  22. My illness has taught me: that I am not what I do, can do, or can't do.
  23. Want to know a secret? One thing people say that gets under my skin is: "So, chronic fatigue syndrome. What does that mean? Are you just tired all the time?"
  24. But I love it when people: know when to listen, and know when to tell me about their life to distract me from what I'm going through.
  25. My favorite motto, scripture, quote that gets me through tough times is: heaven... where all the wrong will be right
  26. When someone is diagnosed I’d like to tell them: sleep now, or forever hold your peace
  27. Something that has surprised me about living with an illness is: how hard it is to get people to understand.
  28. The nicest thing someone did for me when I wasn’t feeling well was: mail me a box of gluten free, sugar free cookies and a card!
  29. I’m involved with Invisible Illness Week because: I want to raise awareness about CFS/ME and be encouraged by others who have different invisible illnesses.
  30. The fact that you read this list makes me feel: loved. Thanks :)

Thursday, August 30, 2012

10,000 Reasons... #4, 5, & 6

These blessings have been collected over the past several days. Praise God with me as you read! =)

#4. If you read my previous post, you can kind of skip this one, but I wanted to mention it again simply because it is such a little thing that wouldn't matter to most of the world, but made all the difference for me. Normally I am a very sunlight-loving person, but when I have a headache, the sunlight is like murder to my eyes and pounding head. The day of our drive back from the Detroit area was very sunny, and I already had a headache that had carried over from the day before. I knew I wasn't going to be a happy camper on the drive home. I had ibuprofen, but that wasn't helping much, despite the fact that it normally does. If only the world weren't so bright and sunny.... Enter my blessing for the day: a pair of welding glasses that actually fit over my glasses and made the world as dark as I needed it to be. Thanks, Abba! :)

#5. Remember my post from earlier this month - words, words, and The Word? One of the words on the first list, Kutapressin, was directly paired to another word on the second list: fear. Why? Because Kutapressin was the antiviral I thought Dr. Conley was going to recommend for me to take, and it is administered through daily self-injection. Those fears were pointless, because Dr. Conley didn't end up prescribing Kutapressin after all; he gave me a prescription for an oral tablet antiviral called Valtrex instead!

#6. Every year our little neighbor boy sells these "Save Around Erie" books with all kinds of coupons. Usually we use them for restaurants: Chick-fil-A, McDonalds, Moes, etc. The book costs $20 and saves way more than that, so its worth it. But we didn't know just how worth it it was to buy that coupon book this year! My dad was flipping through the book the other day and noticed a coupon to be used for getting 10-75% off prescriptions. What I didn't mention about Valtrex is that it is expensive... very expensive. Kutapressin would have cost $100/vial, and most people use 2 vials a month, so $200 per month. Valtrex generic costs almost that ($160) for seven days. Youch. My mom and I went to the pharmacy to find out what it would be to fill my script for 15 days. The discount with our insurance card brought the price to $357. Then my mom opened the coupon book. "I don't know if you accept this, but, what price would it be with this coupon?" It was $145 - less than what we had paid for less than half that dosage in June. Wow. God is good. Thanks, little neighbor boy. That $20 coupon book came in handy for saving $212 on that prescription. And since I have to refill it several times, the savings will be at least four times that since there are four of the coupons. Who knew? :)


Wednesday, August 29, 2012

Doctor's Visit Report (8/27)

Dear Praying Friends,

Thank you so much for praying for our trip! I guess it went pretty well. I was very tired by the time we arrived in Flint (I know I used to get up at 3 every day, but now I like my sleep!) and had the beginnings of another encounter with Horace.

My two-and-a-half hour appointment began with an extensive review of my previous medical history. Thankfully most of that was already written down, so Dr. Conley read aloud to himself, asking a few questions as he went, and I just sat back and relaxed. For once, a doctor took me seriously when I told them I thought I had chronic fatigue and didn't say, "Oh, well let's try this first," or "Have you thought about this other illness or that organ having something wrong?" I really appreciated that I didn't have to prove that I had chronic fatigue; Dr. Conley could see that I do.

At the end of reading my case, Dr. Conley said, "Pretty straightforward!" and then muttered, "knock on wood" as he rapped twice on his desk. He began to assure me that I would get better - that he knew how to treat what was going on, and that there were many things that could be done to help me. I was glad. He gave us hope. Since I have been on before and responded so well to Valtrex, an antiviral drug which helps suppress the EBV, he ordered a prescription for that. A second positive response to Valtrex will not only help my body get back on its feet, but will also help 'buy time' while we wait on the results of some other tests to see what they reveal about the functionality of my body, even down to a cellular level. He put me on a few other prescriptions/supplements (potassium, calcium, lysine) and ordered a bunch of bloodwork and a few other lab kits.

Then he began flipping past the actual story of my illness, reviewed the family medical history, and then started looking more deeply at some of my symptoms. I made sure that I had recorded incidents of 'paralysis' such as this one and told him about others. At this point, he became very serious. So the new name for my episodes of what-seems-like-paralysis-but-is-not is 'spasms.' For these, Dr. Conley thinks I should see a neurologist. Since he's the third doc who has said this, I think this time we might actually make an appointment and go through with it. Please be in prayer for me as I try to find one today; one that accepts our insurance would be grand.

By the time the appointment was over and we were driving south the the Detroit area to stay with friends I had to cover my eyes with a sweater because my sensitivities to light had sky rocketed. By 9 o'clock I was sound asleep, and I slept for 12 hours and yet still woke up with ugly Horace there. God provided in a funny way for something to help Horace behave himself yesterday during our drive back. Our host heard about my sensitivities to light and found an old pair of welding glasses he wasn't using anymore. Surprisingly, they fit over my glasses. They turn the world so green you would think you were in the Emerald City, and they weren't the prettiest things in the world, but, hey! they kept my headache from getting any worse and I wasn't stuck underneath a sweater the whole way home!

Good news: my follow-up appointment in one month will be over the phone, so no long drive to Flint next month!

If you have any further questions about the appointment or the details of what the doc said, feel free to comment or shoot me an e-mail.

Blessings,
~Camille

Sunday, August 26, 2012

Tomorrow!

You know how there are some days of your life where there seems to be a theme? You might see lots of a certain kind of car, or hear the same song in a few different stores, or hear the same word or phrase several times on the same day. Well, if today had a theme, it would most certainly be, "I am praying for you." I must have heard those words about 30 times today. Thank you, Body of Christ. You really blessed me today :)

Tomorrow is the day I see Dr. Conley in Michigan at 2:30 (EST)! I know this meeting has already been bathed in prayer, and I am looking forward to giving you all a report. 

Strengthened for today, hopeful for tomorrow --
~Camille

Friday, August 24, 2012

O Lord... You Know...

"God will not hold us responsible to understand the mysteries of election, predestination and the divine sovereignty. The best and safest way to deal with these truths is to raise our eyes to God and in deepest reverence say, 'O Lord, Thou knowest.' Those things belong to the deep and mysterious profound of God’s omniscience. Prying into them may make theologians, but it will never make saints." (A. W. Tozer, The Pursuit of God, p. 64)

Can you hear the groans - the groans of sinners and saints everywhere?

This life hurts. It is painful. I want out. Why? Where is God? Why did He do that? Why does He allow... even ordain... pain?

My heart can hear those groans. It can also sense divine comfort in the midst of groans, but the groans cannot be ignored.

It takes time to surrender to sovereignty. And right now, I can only lift my hands heavenward and say, "O Lord... You know...." Because He does know. He knows more than I do. And He's up to something heavenly.

 

Tuesday, August 21, 2012

How to Comment

Dear readers,

A few of you have said, "I would have left a comment, but I had to create an account and I didn't know how to do that so my comment disappeared!" Anyone should be able to comment on my blog, regardless of having or not having an account. Here are some step-by-step instructions to help. To help, I've taken a few screenshots. You can click on any of the images in this post and they will appear larger.

Click on the post for which you wish to leave a comment. First, write your comment - as short or long as you please. You will see a drop-down menu of options for how to post your comment. If you have a Google account (if you blog, have a Google+ account, or use GMail you already have a Google account) or use LiveJournal, WordPress, TypePad, or AOL Instant Messenger (AIM), you can use these accounts to log in and leave a comment.



Next, type in your name. If you have a website, you can also put your website in the blank labeled URL, but you do not have to put anything in that blank in order to be able to leave a comment. 


After hitting continue in that window where you were asked to enter your name, and then publish (below the comment box), your comment will not immediately appear. It will be sent to my e-mail, and I will have the approve your comment from moderation. This way, I get to control what people say about me. It's like I'm my own secret police. Just kidding! This is so that I can control spam comments from people who don't really know me and don't care about my blog and just want to advertise their site, drugs, or point of view. When I receive notification of your comment, I will publish it, and it will appear on the blog like so!


Hope this helps! :)

Blessings,
~Camille

A Magical Evening

The beach is amazing. I went last night 'to read' while my family was biking. The sky was so bright blue and beautiful I was staring at that. I got distracted watching the sunlight hitting the trees behind me. Then of course I had to people watch for a while, and by that time the sun was setting. I don't know if I've seen a more beautiful sunset. As it was beginning, a man standing on a surfboard paddled out into the lake past the rock piles. While the sun was setting, he began blowing bubbles with a huge bubble wand. I've never seen anything like it in my life! Some of them were probably twenty feet long! have you ever seen a 20 foot long bubble pop? it starts at on end and just slowly evaporates away. Incredible, especially with the sunlight glistening off them. Truly a magical sight that I will remember for years to come.

What a magical reminder... that... the world is beautiful, and that I am such a very small part of it, so why focus on myself? Why not instead focus on the God who created it all? I felt like standing up and applauding the entire scene - the seagulls, frightened away by the bubbles; the sun, barely glistening over the horizon; the bubbles, soaring high up into the sky before popping; the people, watching in wonder. Why? Because God created and rules and governs it all.

If I would have had my Bible with me, I think I would have read Psalm 148. If you have the opportunity, why not take an evening this week to head outdoors to read this psalm and enjoy the scene God has created? He is so worthy of praise!

Photo Credit: Ewa Kurek