Heal vs Cure

This morning I was thinking about a particular issue and wondering what the cure was for that particular situation. A cure is something almost instant. It grants sure-fire, instant results. Our society is always searching for the cure... But I think there are very few cases in which we have actually found it.

Usually what we discover on our way to searching for a cure is actually more along the lines of symptom relief. We cover up the body's pain signals and declare that the problem has been fixed.

But has it been?

In some cases, yes. Taking Valtrex and slowly killing a virus in order that it can no longer reproduce itself does--after a long time--attack and solve a long-standing problem. But in another sense, the action of taking the medication can give an impression of curing a problem while actually leaving the root unaddressed.

The fact is, there is a reason why cell reproduction skyrockets out of control and mushrooms into cancer. There is an underlying cause for autoimmune diseases where the body attacks it's own organs as invaders. There is a breakdown in the body which is indicating that perfectly normal food is not able to be processed, causing a severe reaction. There is always a reason. The question is, what is that reason? And where do we look to find it?

I really can't answer that question for everyone and all cases. But I can tell you this: there is a reason.

The fact that I know that there is a reason gives me patience on the long road to healing. If I perceived Valtrex as a cure for my chronic fatigue, I am quite sure I would be very discouraged. Because, to be honest, I still have lots of issues that haven't been solved yet. Perhaps this is solely because of the candida overgrowth in my gut, but it seems as though there must be something deeper as relates to my energy production and metabolism that is still broken.

At least I know. This realization has come after a long time and after many reminders, but now at least this truth is on the forefront of my mind.

With this knowledge, I can do battle. I can continue to search for answers and helpful therapies. I've found one in particular that seems to help, and for it I am thankful.

I urge you that if you are dealing with a chronic illness, stop searching for "the cure". More than likely, there isn't one. Some people boast of being able to cure their cancer through this or that, but there is a reason we are all skeptical when we hear such claims. (Such as, well if it was really that easy, why doesn't it work for everyone?) and the reason for our skepticism is because we intuitively know, even if we cannot articulate, that in every body, there are underlying reasons why the body is responding in the way it is.

Cancer. Depression. Chronic fatigue syndrome/myalgic encephalomyelitis. Muscle aches and pains. The common cold. AIDS.

I doubt if we'll ever find the cures. But we can look for the paths to healing. There may be more than one, but it is important to remember: there is one. If the path you're on isn't working, don't give into despair. Try a new one. Take notes of what works. And never give up. Hope may be hard to come by, but at least it never dies.*

Searching for healing,
~Nella Camille

*This last line from Joni Eareckson Tada's article in The Journal for the Christian Institute on Disability, "Hope is the Best of Things."

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! :)

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

"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.

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! :)

"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.

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.

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.

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. :)