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 :)