Trip

Well, I'm writing from South Carolina, literally across the continent from my home in the PacNW. I flew out to be with SisJ for the university graduation here.

DH has traveled enough for business in the last few years to earn a free flight, so I got to come out for graduation. I'm so glad I got well in time to travel; I was worried that I was going to have to miss the trip because of being so sick with mono. But I'm here.

Some lessons learned on the trip: always double-check to see that you have a fully-charged cell phone, some cash, several dollars in quarters for phone calls, a working debit card (and that you know the PIN if your husband set it up with a different PIN than usual), and the phone number and address of the place where you'll be staying (stored somewhere other than your cell phone, in case the battery goes dead). Oh, and a complete outfit and some pajamas in your carry-on in case your luggage gets lost or delayed. Thankfully, my sister's clothes fit me.

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I also forgot to double-check whether any of the flight information had changed between booking the trip and the actual date of travel. My flight got in an hour earlier than the itinerary said, and I had a shorter layover in Atlanta than I'd thought. Thankfully, I did barely make the second flight, just as they were about to shut the doors. One of my suitcases wasn't so lucky.

I actually had packed an outfit in my carry-on, but I forgot a slip and the hose I packed had a run in them. At least I did make sure to put my toiletries, my ibuprofen, and some food in the carry-on. My cell phone died at the beginning of the trip, and I had the charger packed in the suitcase that didn't make the flight. I did have food, which was a good thing since I'm still avoiding cow's milk and gluten and limiting sugar.

SisJ doesn't have a car and thought I was getting in on Wednesday, so I had to scramble around trying to figure out how to make phone calls and figure out how I was getting to her apartment. Thankfully she did find a friend with a car who was willing to drive out and pick me up.

On the flight from the West coast to Atlanta, I sat next to a guy who looked quite a bit like Bill Murray in What About Bob? It felt really strange to be traveling without DH and the kids. I read a book, dozed off, and enjoyed the luxury of being the only person I had to entertain. Long plane flights are much less tiring when you don't have to spend all your energy keeping young children quiet and occupied in a cramped space for hours.

Today J has exams, and I'm hoping to attend the meeting of the Greek letter society I belonged to when I was a student here, Sigma Kappa Rho. (Sigma--Kappa--ROSES! Yeah!) [Every student here belongs to a society--you chose which one to join as a freshman.] I'm also planning to look up some of my favorite teachers, and a few people who were students here when I was attending and are still in the area.

It's been 10 years since I've been in the South, and 11 years since I was a student here. It's really fun to be back again.

I hope DH and the kids don't miss me too much . . . I've certainly never been away from the kids this long before. They begged me not to go, but I know that they'll be fine with their Daddy. I never have to worry about how he'll do handling the kids by himself.

I got my hair cut yesterday . . . ahoulder-length is so much easier to take care of than waist-length, especially as thick as my hair is. I'll have to post before and after pictures when I get home.

Ebee did end up apparently having a stomach virus. She had a fever and diarrhea for a couple of days, but was starting to recover by Sunday. Hopefully nobody else will catch it. I'm praying that I don't get sick while traveling.

J has internet access in her apartment, so if I have time I'll try to check in again later.

No Clindamycin Today

Well, the dentist poked my teeth, tapped, looked around and ascertained that I didn't have any gaping holes in my teeth. No significant infection, either, that he could find. I do have some cavities, but he said that they didn't look huge and there was no indication of infection. So the cavities could potentially be causing the pain, but there wasn't anything obvious that should be causing that amount of pain.

The dentist I saw today said that his best guess for why my teeth would be hurting so badly was that I've been clenching or grinding my teeth. I know I have a tendency to do that, especially when I'm in pain. I've probably had my jaw clenched most of the time for the last month or more. So I may have cracked some teeth or just irritated them. I need to start wearing my mouthguard again.

He also suspected that I have some fillings that may not be perfectly placed and are throwing off my bite. I'm pretty sure this is the case, also, since particular teeth really hurt if I bite down on them wrongly and I have fillings that aren't even with the teeth or have jagged edges.

Or, of course, it could also just be that the fibromyalgia has decided to have fun this week by making the nerve endings in my head go crazy for no particular reason.

The dentist said that he saw nothing that indicated to him that I needed to take antibiotics. He definitely thought it was a good idea for me NOT to take the antibiotic my dentist had prescribed, given mine and Ebee's health history. So I'm really glad I didn't just blindly start taking it yesterday without asking questions or waiting for a second opinion.

Apparently there's a rather high frequency of cases of serious (or sometimes even fatal) colitis caused by this particular drug, clindamycin. All the sources I've checked advise caution in using clyndamycin with patients with a history of bowel problems.

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Clyndamycin has a black box warning about colitis, and for this reason it carries warnings that it should be reserved only for serious bacterial infections where less toxic antibiotics can't be used. The package insert (PDF) also says it's contraindicated for people with colitis and diarrhea, and should not be used during breastfeeding.

Several sites I read said that a dentist should never prescribe this drug to someone with a history of bowel problems, colitis, or especially antibiotic-induced colitis without first talking to the patient's primary care doctor and determining whether the necessity outweighed the risk and that no other antibiotic would be appropriate.

You are also supposed to stop taking it if you develop diarrhea. That could be why it's contraindicated for people who already have diarrhea, you think?

Oh, and it's been shown to pass through breastmilk. Which is why it's contraindicated for nursing mothers. I can't imagine what it would do to a very young child with chronic bowel problems who currently has severe diarrhea, like Ebee.

I did tell the dentist prescribing that I'd had severe stomach and bowel problems (including diarrhea) from any antibiotics I'd previously taken that didn't give me hives, and reminded him that I was breastfeeding and have IBS/CFS/FMS.

He said that this antibiotic should be fine, but to keep a close eye out for any hives or itching or other symptoms of intolerance. He said nothing about a higher incidence of bowel problems with clindamycin and didn't give me any particular cautions to watch out for signs of colitis. He didn't ask if I currently have diarrhea (because, with the IBS, it's a good chance that I do at any given moment, like now for instance).

I'm rather glad that on Monday I'll be seeing the father instead of one of the sons in the dental practice. I haven't seen the father before, but my dad said he feels the father does a better job with fillings. The last filling I had put in (in February) had a jagged edge sticking out, and broke while flossing a couple of weeks ago (the root isn't exposed, just a chunk of the filling came off).

I hear that composite fillings, especially in back teeth, take quite a bit of skill and art and have a fairly large learning curve to learn how to really do them well.
My dentist (the son) just seems a lot more comfortable doing amalgam fillings, tends to recommend them, and seems to prefer them for back teeth. Since I want composite fillings even in my molars, and want to avoid mercury, it seems that it might make sense to find someone who is more experienced and comfortable with this type of dentistry.

When we had the kids' fillings done, we specifically requested composite fillings and they put in amalgam instead. There was some sort of lapse in communication, I guess.

I'd like to find a dentist who is more interested in doing mercury-free work. But I really don't want to be in this kind of pain while thousands of miles from home. I'm leaving Tuesday and won't be back for almost a week. It seems a good idea to try to get at least the two worst cavities taken care of now, in case they are the cause of the pain. I hope I don't regret it later.

When I picked up the prescription last night, I also told the pharmacist that I had IBS and had a history of hives and/or severe stomach problems with antibiotics, and that I was breastfeeding.

I use this pharmacy because it's very close to us and open late, but the pharmacist always pretty much hands me the medications with little or no instruction and then makes me feel like I'm imposing on him by asking questions and then seems almost dismissive in his answers. He's always in a hurry.

The pharmacist told me that I should be cautious with the codeine with breastfeeding (he said a little would be ok, but to try to limit how much I took. He said that the antibiotic should be perfectly fine.

I know that a dentist, especially one being called at home, can't be expected to know all the contraindications of a particular drug. But a pharmacist certainly should at least check on things like that and ask if the patient has any of the conditions listed as contraindications on the package insert and the BLACK BOX WARNING, shouldn't he?

Surely not every patient has the ability to do their own research to find out whether taking a drug could be dangerous with their particular health conditions every time a doctor or dentist prescribes something? I guess that's what the handouts are for, but what about when the pharmacist and the prescribing doctor say it's ok even though you've asked about the things on the handout?

Or am I just really being over-cautious? The dentist I saw today didn't think so.

Dental Update

I was able to sleep all right without any painkillers. Didn't even have to take the prescription I went to pick up yesterday (Tylenol with Codeine).

I think the things I'm doing (natural antibacterials, peroxide and salt rinses, etc.) must be working to kill the infection. The pain is improving quite a bit.

I talked to someone at the dentist I'll be seeing this morning, and told her what antibiotic had been prescribed and what underlying conditions I and Ebee have, and her immediate response was, "Oh, no! You don't want to be taking THAT one."

So they're going to do x-rays to see what's going on and then consider whether I need an antibiotic or not, and which one I should be taking if it's needed.

My dad is going to drive me to the dentist. I was a little worried about driving myself that distance, especially since I sometimes get woozy after having dental work.

I have such a nice family. Dad he watched the kids during my rheumatologist appointment this week, too. When I got home AJ informed me that she loved Grandpa so much that she wanted to marry him when she grew up (M&M and Ebee later chimed in saying, "Me too! Me too!"). She's been saying that lately about people she really likes a lot . . . she doesn't quite understand the concept of marriage yet. :)

Grandpa told her that he was flattered, but he thought he was too old for her, besides the fact that he's her grandpa. He suggested that she should wait until she's older and then marry someone her own age.

"But I will always be your very special friend," he reassured her.

She was satisfied with that.

Poor Ebee

Ebee has had severe diarrhea for a couple of days now. She doesn't get it nearly as often as she used to, but still usually at least once a month or more. (The milder diarrhea is much more frequent still.)

She hasn't been eating much, but is drinking lots of fluids at least. She is tired and clingy and her tummy hurts, of course, but she doesn't seem dehydrated. She also doesn't seem to have a fever.

DH said that while I was out getting my prescriptions filled, she projectile vomited after eating her children's chewable vitamins. We're not sure if she has an intestinal virus, or if the vitamins just don't agree with her.

It could certainly be that the amount of sugar in the vitamins combined with the increased amount of fruit Ebee has been eating the last few days was just too much for her system. She can tolerate more sugars than she used to, but it's still a fine balance.

Or she could have caught mono from me. Diarrhea is one of the possible symptoms, and I certainly have had mild issues in that department myself for the last few weeks.

Or it could be that we're not really tolerating the new addition of goat milk as well lately, since I haven't had the energy to turn it into homemade yogurt.

Things are never uncomplicated around here.

Toothache

Wow. I knew toothaches could be bad but I've never experienced anything like this before. With the fibromyalgia flaring up and the headache from the mono, I kept thinking that maybe my teeth and jaw were just hurting from that. But yesterday it became abundantly clear that there's definitely something going on with my teeth. Probably at least 4 of them.

There are definitely disadvantages to having developed a high pain tolerance. Why, oh why do I wait so long to deal with things? Of course, it didn't seem like as much of a priority, as sick as I've been.

When I went in to the dentist last time they told me I needed something like 7-10 fillings, but I had them start on the worst couple of teeth and was trying to stretch out dealing with the rest so it wouldn't be so much money and pain all at once. (Especially since even getting one filling tends to make my CFS/FMS flare up for a week or two.) Boy do I regret it now. How I wish I'd just gotten them all filled a few months ago.

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And why is it that things always seem to happen on the weekend? I called this morning and all the denists at our office were in training all day today. A dentist can't see me until late Monday morning. I spent all day today calling just about every dentist in the phone book, trying unsuccessfully to find someone who could see me today. I did find a dentist who can see me tomorrow, if I drive to the next state--during a time DH is taking the kids to swimming lessons. I'm not sure if I should go ahead and get the teeth worked on tomorrow, or just wait until Monday.

Meanwhile, I'm dealing with pain that fluctuates from "this is really pretty uncomfortable, and I can't sleep or concentrate very well" to pretty close to the "just shoot me right now, I'm begging you!" level.

Seriously, if someone came to me right now and promised that they could pull every tooth in my mouth right now and guarantee an immediate and permanent relief to all mouth pain for the rest of my life, I'd be seriously tempted to take them up on it. Eat pureed food or wear dentures for the rest of my life? No problem! Just make it stop hurting. Now. Please.

Huge doses of ibuprofen help slightly, as long as I don't eat or drink anything or take too much air into my mouth. But not for long. I've been trying everything from cloves to hydrogen peroxide and salt rinses to attempt to manage the pain.

If you know me, you know that I almost never even pop a Tylenol, and I try to avoid any kind of pain medication if at all possible. I tried taking just a little Ibuprofen, spacing out the 200-mg capsules to try to see if I could get some relief without going with the full 800 mg dose.

When I realized that I'd taken 1400 mg of Ibuprofen in a 5-6 hour time span (800 mg over an hour or so, and then 600 mg over the course of another hour 4-5 hours later) and I was still running back and forth in the kitchen holding my jaw and crying in pain, I knew it wasn't going to cut it to get through the weekend.

I called my dentist at home and he called in in a prescription for antibiotics and a painkiller for me. I haven't taken antibiotics since I was a teen, and I've never had an antibiotic I didn't react to with either giant hives or severe stomach problems.

This one, clindamycin, is one I haven't tried before, but I'm kind of afraid to try it. Especially since after I got home I read that it can be contraindicated for people with digestive issues, especially if they've gotten colitis from an antibiotic in the past.

Considering that I have IBS, already have diarrhea and stomach pain at the moment (sorry, TMI), have gotten severe digestive symptoms (diarrhea, nausea, etc.) from every antibiotic I've taken that hasn't given me hives, and had absolutely horrible stomach issues for YEARS the last time I was on antibiotics, I'm really not sure I want to take this unless it's absolutely necessary.

I'm not really sure if I even have a dental infection, or if I'm just having sensitivity from either cavities and/or gum recession. I probably do have some kind of infection, but the dentist hasn't actually seen me . . . just prescribed the antibiotic over the phone. And the fact that a fibromyalgia flare-up tends to cause worse pain, including mouth and jaw pain and tooth sensitivity, could affect it too.

I'm actually not in too much pain at the moment, since I haven't eaten anything or opened my mouth for a while. I think I'll just try to go to sleep now and call the dentist to ask about contraindications on the antibiotic in the morning.

The tendonitis in my ankle was acting up pretty badly this week, too. Sometimes I feel rather like my body is falling apart.

Rheumatology Report

I liked the rheumatologist . . . I really wish I could find a primary care physician with such a kind, respectful, attentive and knowledgeable manner as this specialist. She was a lovely, soft-spoken Indian lady with just a hint of an accent, and not at all hard to understand (unlike the last doctor I saw).

She just saw me for the one consultation, but she made some recommendations of things for my primary care doctor to follow up on. Nothing earth-shattering or really new, but it was nice to get a second opinion and a confirmation from a specialist that my diagnoses are probably accurate and to (again) be told that I'm really doing quite well at managing it all.

"And you have three children and homeschool them! I don't know how you do it. That's amazing," she said. "That would be a challenge even for a normally healthy person." Her tone did not in the least imply that it was a bad thing. :)

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The rheumatologist agreed with the last doctor I saw that, although it's quite possible that I may have the chronic form of Epstein-Barr Virus, it seems a bit more likely that I just recently caught the acute form of Infectious Mononucleosis. Both doctors agreed that there wouldn't be much point in running titers to try to figure out which it is, so I'm content to let that be.

She did suggest a few medications for consideration. The medications she mentioned included two (Lyrica and another one) that I had actually heard of being useful to treat fibromyalgia pain, and a third that I hadn't heard of to treat fatigue. The third one piqued my interest . . . it's usually used for patients with narcolepsy, but she said it has been shown to be quite helpful with some chronic fatigue patients just to get them past the fatigue enough to be more functional and get necessary things done during the day.

She didn't think any of the medications were compatible with breastfeeding, though. I appreciated that she didn't bat an eye when I told her that my 2.5 year old is still nursing a few times a week. She didn't even ask me when I was going to finish nursing Ebee or push me to try to wean her faster, as most of my doctors have done.

Regarding the chronic fatigue syndrome and my sleep difficulties, she thought I should probably have a sleep study done. I'll have to talk to my other doctor about that and try to find out what that might show and whether it's likely to show anything that would be treatable.

I know that I have irregular sleep cycles, but I'm pretty sure I don't have apnea or anything like that. I do know that I often have trouble falling and staying asleep and reaching the deeper stages of sleep, and that has to contribute to the fatigue. But a sleep study would be very expensive, even with our insurance, and I'm not exactly sure what would be gained by knowing exactly how insufficient my brain is at reaching REM.

I'm wondering if it might be possible to try to address the sleep issues before going to the time and expense of a full-blown sleep study. I'll have to ask the doctor about that.

Oh, and the rheumatologis caught something that both my PCP and I had missed--I haven't had a thyroid test done recently. I was thinking my doctor had done that with the rest of the blood tests, but there was no record of one. I haven't had thyroid function checked since 1996. The rheumatologist said that I should be having it checked yearly, especially with my health issues and the family history of thyroid problems.

She also told me about a fibromyalgia clinic at the nearby teaching/research hospital and said I might want to consider getting a consultation there at some point, and gave me some information about finding a CFS/FMS support group.

In a way, it's always kind of a letdown to go to a new doctor and be told that, yes, I have fibromyalgia and chronic fatigue syndrome and, no, there's nothing they can do about it. But at least she assured me that my symptoms and complaints are very normal for that set of diagnoses, and she certainly didn't try to tell me it was all in my head.

I did forget to ask about a couple of things I wanted to know. I really should have written it all down. Oh, well.

Recovering

I'm still feeling better. Though I still tire very easily and don't have a lot of strength or energy, I seem to have been over the acute phase of mononucleosis for a little over a week now.

I have my appointment with the rheumatologist in the morning.

Meanwhile, I've been reading to the kids a lot and we're all really enjoying our current unit study on Russia.

Sunday Evening

DH and the kids cuddled up to rest on the sofa before dinner. It's been a long week, and everyone was tired.



DH and the two younger kids were asleep by 6:30.

Should I wake them for dinner, or not?

Wordless Wednesday: My Darlings

Babywise?

Here's an interesting article by Dr. Sears addressing some of the Christian parenting advice from those who claim to be teaching the only correct formula for "growing kids God's way".

Do you agree? Disagree? Have something to add?

I'll put my thoughts in the comments when I have a few minutes to write them out.

Good Things

The last few days have been busy.

Friday night and Saturday there was a women's event at church. I really wanted to go, but didn't think I would be able to since I still have foggy vision, dizziness and disorientation from the mono that makes driving--well, not such a good idea. My friend CreativeCrafty from our home group volunteered to drive me, though, so I said I'd go if I felt up to it.

I checked with our women's pastor and found out that it would be all right for me to lie down on the couch in the mother's nursing room and listen to the sessions on the speakers in there. Since I no longer have a fever and mono isn't terribly infectious by that point, I wasn't too worried about exposing anyone. I would keep my distance from the babies and, of course, not share food or drinks with anyone.

I felt pretty good Friday morning, but by lunchtime I had already hugely overdone it for the day. Just trying to have a more involved day of homeschooling completely did me in.

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My grandparents had dropped off about 6 meals that Grandma had cooked and frozen for us in the morning, which was wonderful. But I was on my own with the kids for the day. There was no way I was going to be able to go to the event that evening, the way I was feeling by late morning.

By lunchtime I had used up my last reserves of energy and was on the verse of collapse, but Baby E was showing no signs of being ready for a nap. I was just thinking about calling DH and asking him to come home from work when the phone rang.

It was Morning, calling to see if we needed anything from the Trader J's store near her house.

"I was thinking I could pick up some groceries for you, and then play with the kids for a while so you can take a nap," she said. I almost cried. If I could have hugged her over the phone, I would have.

I slept all afternoon while Morning took the kids out to ride bikes and play in the yard. She stayed until DH got home from work and took over.

I got up just in time to get dressed for the event, and DH and the kids drove me to church. CreativeCrafty drove me home, and then picked me up and took me home again on Saturday while DH took the kids to swimming lessons.

Going up to lie on the couch in the mother's room during the teaching sessions worked perfectly. A couple of times I tried to sit in the sessions with everyone else, but sitting upright and still for so long with bright lights and loud noise tired me out very quickly and sent my pain levels up several notches within minutes. It was so nice to be able to go lie down in a dark room with my eyes closed and listen on adjustable-volume speakers.

With resting during the lectures and worship times, I was able to sit and interact during the group discussion times and meals. The people in charge of food even arranged special meals for me with no sugar, dairy or gluten. Have I mentioned that I really love the people in my church?

The event was great. I made some new friends, got to know some others better, and was touched and encouraged by the messages and the discussion/sharing time.

I'm so glad I had friends that made it possible for me to go.

By the time I got home Sunday afternoon, I was completely exhausted and in a lot of pain. I was a bit worried that I'd overdone it too much and would be in for a more difficult next few days as a result. I hadn't been able to sleep much lately, and I knew I really needed to sleep that night, so I took a couple of Ibuprofen--something I really try to avoid doing. It took the edge off the pain and muscle spasms just enough to let me sleep. I rested, slept, and rested some more. I finally got up about 24 hours later, just in time for the home group meeting at our house.

Our friend Loves to Clean came early to help DH and the kids get the house ready for home group. The families in the group have been taking turns doing that so I can rest until it's time for the meeting to start. By the time LTC was done, I think the house was cleaner than it's ever been for a home group meeting before. She was even scrubbing walls.

A solid 24 hours of rest made a huge difference for me. That, and I'd had 2 days on the treatments my naturopath sent to take for Mono. People would walk in, take one look at me, and say, "Oh, I'm so glad you're feeling better!"

I slept well again last night. Today I was still very tired and easily fatigued, but definitely better. For the first time in a month, I didn't have a sore throat or a severe headache. Hopefully that means the acute phase of my mononuleosis is coming to an end.

My 16-year-old mother's helper came this afternoon for the first time. She took the kids for a walk and played outside with them while I napped. The kids absolutely loved her. I'm so excited to have found such a jewel right here in our neighborhood.

This year's curriculum

I started working on a post last week on HomeschoolBlogger about what curriculum we're using this year. I think it's finished, for now. Feel free to go over and check it out.

I'll have to post a picture of Ebee's book about numbers. We just started making it yesterday. It's really turning out cute, and her counting is improving by leaps and bounds even just after working on it twice.

I got the idea for the book from Learning Language Arts Through Literature, Red Book (2nd grade). I started using it with AJ and M&M yesterday. They seem to be enjoying learning about punctuation and parts of speech so far. AJ already has quite a good grasp on the concept of nouns. She already knew most of her punctuation, but it's good to review and practice anyway.

Treatment vs. Research

Well, the doctor called today. I must say, a language barrier that causes problems talking in person is even worse over the phone. I don't know what it is about a heavy Chinese accent for me, but I find it incredibly hard to understand. She seems to have a hard time understanding me, too.

Of course, it didn't help that almost as soon as the phone rang the kids got into a knock-down, drag-out, screaming fight over some scraps of fabric. And would. not. stop.

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I think the doctor started out by saying (if I was understanding correctly) that she wasn't sure I fit the normal pattern of mono because most people with mono are in bed pretty much all the time, or need to nap every two hours. I told her that, actually, that pretty well described me for the last few weeks. And that, yes, actually I did have a mild sore throat and most of the other symptoms of mono.

Then she explained that there was no treatment, and doing more tests would be pointless because it wouldn't give us any more information for treatment purposes. She recommended that I stay in bed for a week or two and see if I felt better after that. Obviously, I've already been doing that as much as is possible with three small children. Thankfully, I am starting to feel better the last couple of days, although I still have to take things very slowly and rest a lot.

It took me a while to get it across to her, but I think I finally explained that I understand there's no cure for mono. But because I've had chronic fatigue syndrome and fibromyalgia for so many years, I would be very interested to know if the mononucleosis is just acute Infectious Mononucleosis or Chronic Epstein-Barr Virus.

I think the gist of what the doctor said is that it is possible I have Chronic Epstein-Barr, since many patients with Chronic Fatigue Syndrome do. But the fact that I recently became ill with many of the common symptoms of Infectious Mononucleosis suggests that it is likely a new thing. Especially since she has had several patients come down with mono this spring.

Of course, it does make it more difficult to tell since I have similar symptoms to varying degrees much of the time anyway, and end up quite ill several times a year as a rule. So, really, it could be either way.

She said that there are antibody blood tests that can give clues as to whether it's an acute or chronic infection, but she doesn't know much about them. She is, however, willing to do some research and try to find out.

She warned me, though, that she may not order the tests even if they are available. She told me that she has many patients and works 12-hour days, and it's not normal for a doctor to spend time researching something that won't actually be helpful in treating a patient and making them feel better, when there are other patients who need to be cured or have their symptoms treated. Essentially, it would be robbing resources from other patients to whom it would be of more benefit.

If she does do the tests, it would fall under "research" rather than under "treatment", and because it's not necessary for treatment she may not be allowed to order the tests, and they may not be covered by insurance.

In other words, even though another blood draw could possibly give some answers as to the cause of my chronic fatigue and fibromyalgia, it may not be worth doing because it won't help cure or treat it. Since, of course, FMS and CFS are not curable or treatable.

So trying to get answers about it wouldn't be doctoring. It would be research.

Blessed

I'm so blessed by all the offers of help and support we've had this week from our church, family and friends. Today a friend from our home group came to watch the kids and help with some household chores so I could sleep.

I feel like I could sleep for a week almost without waking up, but having people come and relieve me so I can nap, and their help with practical needs, has made such a huge difference. I don't know how I would have made it through the week without it.

That, and the kind and encouraging comments from readers here. Thank you all.

This week's e-newsletter from our homeschool group included an article by Sonya Haskins titled, "Homeschooling When You Live With Chronic Pain". It was so timely for me, especially considering my recent doctor appointment.

She talked about how, though she wouldn't choose this path, homeschooling with chronic pain has in many ways made her a better parent and enriched their family and homeschooling. She has a condition that could take her life at any moment, and this awareness has changed her approach to life and made her appreciate her time with her family in a unique way.

I wish I could link to the article or share it here, but since it doesn't seem to be listed on her website and I don't want to violate copyright, I'll just leave you with a brief quote:

"So if there is one thing I could share with other homeschooling moms who deal with issues of chronic pain or chronic illness, I would say to keep your focus on eternity while enjoying every moment of today. . . . Don't give up teaching your children at home because you are sick or feel that you're aren't doing such a great job. Your children may be learning math, writing, and history at a slower pace right now, but they quite possibly are learning about patience, faith, sacrifice, love, and forgiveness. These things will have eternal value!"

As I said in a note to Sonya Haskins thanking her for the article,

"I have been struggling with chronic illness and pain all my childrens' lives, and I do worry about how it will affect them and feel badly about the things I can't do with and for them. But they are wonderful, compassionate, caring children, and I'm sure being around my illness contributes in some way to that. It also gives them the privilege of seeing a father who has a truly sacrificial level of involvement in the daily household tasks, parenting, etc. and who so obviously loves and cares for his wife and children."

My husband truly illustrates servant leadership and a godly attitude. For the last few weeks has been getting up to get the kids ready for the day and feed them breakfast, often coming home in the middle of the day to help with lunch and/or let me nap, and then coming home tired after work to fix dinner, do dishes and laundry, and put the kids to bed.

He has been so gracious and kind about it, thanking me repeatedly for taking care of myself and telling me to just take it easy and conserve my energy.

I am so very blessed.

Getting there

I'm feeling much better today than I was yesterday. I slept well last night, and I started taking Vitamin C as sodium ascorbate every few hours, and also remembered to take my other supplements (I've been forgetting a lot lately).

Parts of the day I actually almost felt normal. I still needed to rest a lot, but the dizziness and other symptoms weren't as bad today. I was excited that I was actually able to take a shower and wash my hair AND get dressed, all without feeling completely on the verge of collapse before I finished.

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This afternoon the neighbor mom and daughter came over to talk about the 16-year-old coming over to help with the kids, and I scheduled her to come Monday afternoon.

I think she'll be good. She is willing to play with the kids, has quite a bit of experience babysitting, and has taken the Red Cross babysitting course, which I know is good (I took it as a teen, too). The other neighbor who has used her as a babysitter gave her a good review. The kids seemed to like her. And her usual rate of charge seems very reasonable.

She's going to be able to do some of the things with the kids that I haven't been able to do, like taking them for walks and taking them out to ride trikes. I think she's coming Friday afternoon to take the kids for a walk, too, but the brain fog kicked in and I'm not sure whether she's actually doing that or not.

My mom brought us dinner tonight . . . delicious Sopa de Lima (chicken soup with lime and spices). Apparently my sister SisJ had a migraine yesterday. She's having such a hard time finishing college, due to her chronic health issues (similar to mine, but worse). I'm keeping her in my prayers.

DH commented while we ate dinner that it was so nice to actually have me dressed and sitting at the table with the family for dinner. It's been a while.

I talked to the nurse at the clinic today, trying to find out if I can get titers run to find out if I just contracted mono or if I have had it for a long time. After 3 or 4 phone calls back and forth this week, the verdict is that they want me to wait until the doctor who saw me is back in the office, which will happen Friday.

Another doctor looked at my chart and said that my doctor would probably want to run more tests given my health history--not only to try to figure out how recent the infection is, but also because apparently other viruses besides Epstein-Barr can cause a positive monospot. So that may not even be what I have. But they wanted to let the doctor who already saw me decide whether and what tests to run.

Considering that my doctor already sent me a letter pretty much saying, "Your monospot test was positive. Have a nice life." I'm not at all sure that she'll be gung-ho on following up on this.

My concern is that some of the titers have a pretty short window of opportunity during which they are useful for determining whether it's a recent or older infection. One thing they test for is only present for the first 4 weeks of the illness. Since this current illness or flare-up started about 3 and 1/2 or 4 weeks ago, I'm concerned that waiting the extra week might make it harder to get helpful results.

Now it's 7PM and my body is telling me I'm done for the day. "Need. Sleep. Now." I think I'll head to bed. Hopefully tomorrow will be another day of improvement.

LOL, if only you could see what these posts lately have looked like before corrections. Thank goodness for the backspace key and for spell-check.

Are we there yet?

I'm feeling quite a bit worse today. I'm so glad my grandparents were able to come over. Grandpa played with the kids while Grandma did laundry and fixed lunch. I mostly stayed in bed. Ebee actually took a nap this afternoon while the older girls had quiet time, so I slept too for a while.

Ebee is really testing the limits right now, especially since she knows I'm not able to follow up on things as well as usual. She's been doing a lot more hitting and pushing than usual, and today she dumped an entire container of flushable wipes into the toilet--again--(they're not flushable that way!) and scattered a ripped-up roll of toilet paper around the bathroom. AJ has been more weepy than usual and M&M a little less cooperative than normal, but mostly they're doing pretty well. It's hard on the kids to have Mommy so sick, I know.

I just found out that Luke Jensen's mom is a childhood friend of mine. I hadn't realized that--I was thinking it was a family that goes to our church, but it's not (a good friend of the Jensen family does attend our church, but the Jensens attend a different fellowship). It's so hard to realize that Vikki's son is the one who is so sick. I haven't seen her for years, but our families were good friends and we used to see each other frequently when I was small. Luke is still fighting leukemia, and would appreciate your prayers.

One day at a time

I called and left a message for the on-call doctor today, asking about having titers run to try and see whether I've had the Epstein-Barr Virus in my system for a while, or whether it's a new development. I hope they'll be willing to run the tests.

If it is something new, I estimate I came down with it about 3 weeks ago. That's when I suddenly started the worse-than-usual decline in my health and started having trouble doing even the most simple, routine tasks for more than a few minutes at a time. For the last three weeks my body has demanded to spend most of the time prone or asleep. When I'm not in bed, I'm able to stretch out the time before I have to lie down again by sitting to rest every few minutes, and doing things while sitting down as much as possible.

I'm discovering that there's actually quite a bit I can do while lying or sitting down.

I'm lying on the sofa in the family room right now, with the laptop propped in front of me. AJ just finished reading to me about Iraq and discussing what she learned with me.

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Ebee keeps bringing me drinks of water, and trying to hold them up to my mouth to help me drink. E loves the water dispenser in the refrigerator. She has decided that her mission in life is to constantly bring water to everyone in the house.

It seems that every time DH or I turn around she's holding out a cup of water, saying encouragingly, "I bwought you tum watuw. Hewe, dwink it. Dis is youw watew; it's foy you. Tum on, dwink youw watew. Dwink it. Tum on, dwink it. You need tum watew. Hewe's youy tup. Dewe's watew in it; dwink it. I'w hewp you. Hewe it is; dwink it. I dot it foy you. Dwink it aww dohn. Dat's wight, dwink it aww . . . yay! You dwank aww youy watew. I'w det you tum moy."

We're all staying very well-hydrated. :)

This morning, as he's been doing most days lately, DH got up and fed the kids breakfast before he left for work. Then they watched a 30-minute video while I rested some more before school.

When it was time to start school, I had the older girls bring their books upstairs to sit on the bed with me. I helped them get started on their schoolwork and supervised them from my bed. Baby E brought me books to read to her while the older girls were working.

I got up to put some frozen chicken nuggets in the oven around lunchtime, and sat at the computer a bit while they were heating and the kids played. After lunch, I sat on the floor to sort through a few things to find a schoolbook I want to start using for AJ, and some storybooks for the girls to read during quiet time.

The kids played in the playroom for a while after lunch, with me lying down nearby as much as possible and getting up when they needed me. By the time I got the kids set up for quiet time I was exhausted and had to lie down again.

I tried to rest while the girls had quiet time, but Ebee is growing out of naps is still learning to honor quiet time. So I kept having to get up or call the kids in to separate them and have Ebee go back into the playroom, where she was supposed to be playing quietly in bed. She really wanted to be in the bedroom where AJ was reading, and kept trying to go in and take AJ's books or try to talk AJ into reading to her. I did try to get Ebee to come lie down in bed with me, but she did NOT think that was a good idea. :)

After the kids' quiet time was over, I was even more tired from getting up and down. I could barely keep my eyes open, so I let the girls watch another video. I hate to let them watch more than one video a day--ideally, I prefer not to have them watching them on a daily basis at all. But being home alone all day with 3 kids and a case of Mono calls for exceptional measures.

By the time the video was over, DH was home. He picked up our fresh batch of raw goat milk from the farm on his way home, and heated up leftovers for dinner while I kept tabs on the kids. I still don't have much of an appetite, so I drank some broth and then laid down on the couch in the family room to be near DH and the kids.

DH is now upstairs with the kids getting them ready for baths. My grandmother called a few minutes ago to say that she is going to be in town tomorrow, and wants to come by to fix lunch and feed the kids for me. She's going to make us some casseroles this week, and bring them by Friday around lunch time so she can help with lunch again. I just about cried. I'm so thankful to have the help people are offering. A couple of families from our home group are planning to come over sometime this week, too. My mom is looking into having some meals put together for us. On Wednesday I meet with my neighbor and her teenage daughter to talk about hiring the 16-year-old to help out for a few hours a week.

Today I was actually starting to feel restless with so much lying down. Until today I was getting up when I had to, but it wasn't because I wanted to be up. I don't feel too bad for the most part as long as I'm not actually on my feet (especially if I just slept for a while), and today I keep thinking that maybe I'll be fine to start resuming normal activity.

Of course, as soon as I stand up the fatigue and dizziness, etc. hits me and all I want to do is sit or lie down again as soon as I can. But I think it's at least a good sign to be feeling like I want to get up. I can even use the computer or talk on the phone while lying down without too much discomfort, at least for short periods of time.

I've been resting as much as possible, and I'm really hoping that will help me kick this virus as quickly as possible.

I'm supposed to fly out to my sister's graduation in about three weeks. Right now I'm not able to drive safely or be up and active for more than a few minutes at a time, much less travel from one coast to the other navigating layovers and carting around a heavy suitcase by myself. I heard that doctors used to automatically prescribe 4-6 weeks of bedrest when someone came down with a case of mono like this. If I came down with it when I think I did, 6 weeks will barely be over before I'm supposed to fly out. I really hope I don't have to cancel the trip.

Really, though, even though physically I'm pretty low, mentally and emotionally I'm at peace and doing well. DH has been amazing; the man is truly a hero. We're managing, God is providing day by day, and we'll get through this.

Not Just a Kissing Disease

When I told my MIL that I had mono, she replied (jokingly?), "Who have you been kissing?!"

"Just my husband."

I had to chuckle, because he's the only one I've ever kissed. (Our wedding "you may kiss the bride" kiss was our first kiss--for both of us.)

Even though it's known as "the kissing disease," mono can be spread by things like coughing, sneezing or sharing food, too.

Just so you know.

Most people (perhaps 95%) have had it by age 40, but it's often asymptomatic. Many people don't even know they're carrying it.

Second Opinion :)

My friend the pediatric endochronoligist called today . . . it was very sweet of her. I'd e-mailed to tell her about my most recent set of test results, but hadn't expected a reply this week because she's busy getting ready for her sister's wedding.

Anyway, she agreed with my doctor that none of the results other than the positive mono result were significant. It's so nice to have a doctor friend who is willing to explain this stuff to me. :)

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The small amount of protein and crystals could be from something as simple as dehydration, and is quite minor. The levels I had were low enough that I don't really need to worry about them in relation to kidney function, although of course that's something we're always keeping an eye on because of the family history.

The vitamin D, she said would probably be about the same in anybody living in this part of the country at this time of year. She did say it was a good idea to continue taking the cod-liver oil and eating foods high in D, especially since that seemed to improve my energy levels when I started doing it. She said that a lot of people with borderline low levels do feel better when they start supplementing D.

As for the mono, it's not really possible at this point to know whether I have the chronic form or a more recent infection. Since I've seen a significant decline in energy levels, an increase of other symptoms, and some new symptoms in the past few months, it does seem likely that I may have just recently contracted it.

She did warn me not to expect an increase in energy levels any time soon, especially since otherwise healthy people can take months to recover, and I'm the one who takes weeks to recover from a minor cold that everyone else was over in days. Of course, there's nothing to do for it other than lost of rest and fluids. Rest and not overdoing it is going to continue to be important for me.

Mono is not horribly contagious through casual contact, but can be contagious for up to a year even in a normally healthy person. So, especially if I'm around immune-compromised people like my mom and FIL, I need to make sure to wash hands frequently and wear a mask if I'm coughing.

Not that there's much danger of exposing anyone outside our immediate family and home group right now anyway, since I don't really have the energy to do anything or go anywhere. Just getting out of bed tires me out.

At least I figured out how to prop up the laptop so I can use it while lying on the couch. It's not too uncomfortable as long as I turn the lights on the screen really low. So maybe you'll see a little more blogging since I'm lying around so much these days.

Positive

I've been trying to get copies of various medical records as far back as I can, and my records from my current medical office came yesterday.

As I was looking through them last night, I realized that the results of my most recent panel of tests were included. I haven't heard anything at all from my doctor about them, although she signed off on the results a week ago.

[ETA: Actually, she did send me a note about the results--see end of post.]

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The monoscreen panel (Epstein-Barr screening test) was positive.

Apparently, I have mononucleosis. MONO! I don't know how long I've had it, but I suspect at least this most recent downward slide is resulting from that. No wonder I feel so rotten. It's kind of exciting to find out that I actually have something measurable by a clinical test, LOL.

The really interesting thing is that apparently there's an atypical presentation of Epstein-Barr Virus (mono) that, in a small percentage of people, continues flaring up and causing symptoms over and over again and is believed to be one possible cause of Chronic Fatigue Syndrome, although that's still somewhat debatable. The social security department actually lists a positive titer for Epstein-Barr as one of the factors that can help establish a supportable diagnosis of CFS.

It would be nice to have at least one actual supportable cause confirmed by lab results for the CFS symptoms. Even though that wouldn't make it any more treatable.

What I'm really hoping, though I'm not sure how likely it is, is that my most recent escalation of symptoms is just from coming down with Mono separately from my other health issues, and that I'll have it once and it will go away and I'll get better. A girl can hope, right?

Anyway, I'm glad I thought to mention that I'd like to test for mono, and the doctor actually agreed to do it.

I also had some protein and crystals in my urine, but the creatinine and BUN were still in the normal range. The good blood tests are hopeful that something other than the family kidney issues is causing the protein and crystals.

And, my Vitamin D levels were borderline low (30) even though I've been taking high-vitamin cod-liver-oil for a while now (which has D in it) and am now using whole goat milk products. Apparently low Vitamin D is very common in fibromyalgia patients and other autoimmune disorders, from what I've been reading. According to the lab results, 30 is exactly the dividing line between insufficient and normal Vitamin D.

I had asked the doctor to test for iron and B vitamins, too, but she said she didn't think that was necessary because my iron levels had been normal (on the low end of normal ranges) a year ago. The iron levels per se weren't checked this time, from what I can tell, but platelet counts and blood cell counts and that sort of thing were normal.

**** I thought I hadn't yet received any communication from the doctor about the test results, but DH just found two letters buried in with the bills, that apparently arrived several days ago. He assures me that this time he double-checked and there weren't any more. I've been asking him if I'd gotten a letter from the doctor yet, and he kept saying there was nothing but bills. He's quite apologetic. :)

Dear Ms. (Purple_Kangaroo),

It was a pleasure seeing you at the time of your recent examination. I am writing with the results of your laboratory studies.

Your complete blood count was normal with no evidence of anemia. Your chemistry tests including blood sugar, electrolytes (with sodium and potassium levels) and kidney function were normal. Your mononucleosis was positive, it may explained [sic] why you were so tired. sed rate was normal. [sic] Vitamin D was pending.

Please don't hesitate to call if you have any questions. Best Wishes.

Sincerely,

C------ W--- MD

The second letter just said that the Vitamin D was normal.

No mention of the urine test results, but at least she did read the lab results and contact me about them. :)

I wonder where I go from here?

Encouraged

DH and I have been doing a lot of talking, thinking and planning. I'll share more of that later.

The two of us went to church this evening where the elders took time out from their business meeting to sit with us, listen, ask questions and then anoint us with oil and pray for us. It was refreshing and encouraging.

The kids had a blast with Grandpa (my dad). They were so excited to have him come and play with them for a while, and were quite miffed when he had to leave.