Appt. set

I'm going in Wednesday night at 6:30pm for my dental appointment. Should be fun! Six cavities need temporary fillings and the one I already got needs to be checked (in my opinion; because it's sunk quite deep, but it is only temporary, so we'll see).

So, just wanted you to know. I'm not sure if I'll indulge in drug relief, but I'm certainly not feeling a lot of anxiety about this appointment. I barely remember it. Perhaps partly because I'm so busy!

Love you all. Merry Christmas!

So lucky

You guys are so lucky, getting to hear only about my medical issues. I was reminded of this by a faithful blog reader, and I apologize. It just means that I am not doing a good job of staying in touch with you outside of this blog. ;)

So, here's another medical update:

My dentist stalker, as I am now going to call him, is meeting my husband for prayer (they're prayer partners, did I mention that?) and when they scheduled the prayer time, the dentist also asked if I could come in sometime "soon" to have my other six cavities sedated until next year when I can get real fillings. Because he's worried about the decay necessitating crowns next year and wants to save us money. I asked my husband to clarify "soon" and he said that our friend said "I have openings this week!" Hurumph. That's why he's my dentist stalker. He's always looking out for me and my teeth, and he won't leave my dental health alone! ;) I am very lucky to have such a stalker, I realize, and to have such a talented and reasonably-priced dentist is a gift from the Lord. So, I gave my husband some available times so that they could schedule at the prayer meeting today, and then I'll probably go in for my four shots (b/c there's at least one cavity on the upper right, upper left, lower left, and lower right sides of my mouth--all sides) sometime later this week, maybe even tomorrow. We'll see if I decide to go with the Valium. I'm feeling fine right now, just irritated that I can't wait for this fun work until after the holidays. ;)

As for my Crohn's, I haven't been feeling great, but I think it's okay. Life has been full of positive stress (Thanksgiving travel and family) and negative stress (LONG to-do list at home and large church art project due soon), and both affect my Crohn's the same way. We're working on going on more walks and I'm trying to be careful with what I eat (especially during the holidays). And I'm trying to express emotions healthily and on time.

Thank you for your prayers. I hope your Advent has started well.

I SURVIVED!

Yes, it's true, I survived. And yes, it wasn't as bad as I thought it would be. The valium helped a little to calm me, but truly, the shot itself wasn't nearly as bad as I'd anticipated (I hear a collective, "SEE!"). And I kept my eyes closed and prayed for the rest of the procedure, which went well.

So, praise the Lord! Thank you for praying for me and thinking of me throughout all this.

The dentist said that the tooth was all hollowed out inside, and even cracked, so it was VERY good that I went in when I did. He said I will definitely need a root canal, but that can wait for January. I just have to continue to be gentle with that tooth when chewing.

The main issue right now is that I can't feel a quarter of my mouth area (including half my tongue), and that's very odd. I hope it wears off soon. He said it usually takes half an hour to three hours; the shot he's given that's lastested the longest lasted eight hours. But that's VERY unusual. He gave me lots of warnings to be careful about my tongue, so I'm concentrating on keeping my mouth and jaw from clenching, which I tend to do when nervous. Oh well. I just overeact. ;)

He said I did a great job with the shot (even told my husband when I was in the restroom that he flinches more than I did).

Thank you again. I love you all. Happy Thanksgiving!

New appointment time

TUESDAY. NOON.

I'm feeling much calmer, though I'm still planning to take Valium (we're trying two this time, because one didn't do anything). I talked some more to the dentist about what he's going to do, and that helps me feel better (I usually feel better when I'm better informed). He's going to clean out the tooth and fill it with a "sedative filling," which should be okay until he puts in a crown or something more permanent next year. Sounds good. Also, further feedback from friends about Novicane shots makes me feel calmer as well. Not to mention the biggest help: I received prayer about all this anxiety on Sunday. The anxiety is sadly affecting my Crohn's. So, after all that, I think I'll be fine.

Thank you for your prayers. I'll update the blog with how the appt. went.

RESCHEDULING

Well, as luck (or something else) would have it, my dentist's back is out and he can't come to work this morning. So, we're going to talk at church tomorrow and reschedule.

I'm so sad that my husband and I couldn't sleep in, but glad I don't have to go through it today, but sad that I have to get ready for it all over again another day... Perhaps this false start will lessen the anxiety before the actual event. We'll see.

I'll keep in touch. Thank you for your prayers.

Doing okay

I'm doing okay, just so you know. I'm not freaking out very much, I just happen to think about my appointment tomorrow a lot. And then I just try to give it to the Lord. He can handle my anxiety and instill peace in my mind and heart.

So, I think I'll be fine. I'm feeling especially hopeful because my doctor said there wouldn't be a problem with having dental work on Imuran and I should be fine using Valium on Imuran, too. Yippee! So, I'm doing a little "experiment" tonight, as my dentist/friend instructs me, to see how Valium makes me feel. He said there's a small percentage of people who have the opposite reaction to Valium than hoped: they get really restless and unable to settle down. Or other people just get knocked out and fall asleep. I've had a generic Valium in college for my (first) colonoscopy, and it had the "intended affect:" I was very restful and happy and at ease. I'm hoping I'll have a similar experience this time.

And for anyone worried: my husband will be driving me to and fro tomorrow. ;)

Some of you have brought up a good point: there's a chance that this dental work will improve my health. If indeed my teeth have been allowing bacteria into my body willy-nilly, then closing those doors will keep me healthier. We'll see!

Teeth

Here's the (long) story:

Monday night after small groups, my husband and I were talking to our friend, who's a dentist. We were asking him about dental insurance and how good mine was. He said he would take a look at our teeth, if we wanted, to see what kind of work we might need in the next year, so we'd know what kind of plan to get. I said that I haven't been to the dentist in like seven years (sorry Mom and Dad!) but I would like to know. So, he fit us in today, Wednesday (it's very nice to have a friend who's a dentist).

He took a look this afternoon and said, "Well, you're making up for lost time."

Seven cavities. One of which looks dead and will probably need a root canal and to be rebuilt (crown, etc.). Four wisdom teeth need to be removed.

Start the panic.

As some people who read this blog know, I have a little problem with dentists. I freaked out at the dentist for many years growing up (like, three hygenists holding me down every time, just for teeth cleaning). I was probably in middle school before I settled down. I've only been to one dentist in my life until today, partly because I. Hate. Going. To. The. Dentist.

And now I'm making up for lost time. Yes, I'm freaking out. You know me! But I know that it will be okay, once I get over this hump. And if I take care of my teeth, I probably won't have to worry about this magnitude of work for a long time after all this work gets done.

He asked me when I can come in. I said, "How about January 1, when my insurance kicks in?" He said, how about tomorrow? Yup. He said I cannot wait much longer to take care of especially one of my teeth. It's that bad. So, I'm going in on Saturday.

I write this on my Crohn's blog because (1) it relates to my health and the way I deal with health problems, (2) I want to update my family and friends all at once so you can be praying hard, and (3) my Crohn's adds some difficulty to this situation. If I didn't have Crohn's, I could just sign up for an appointment, get some valium (tee, hee), and get started. Because I have Crohn's and am taking a heavy-duty immunosuppresant drug, I have to get clearance from my doctor, which might mean some preventative medicine before or after the appointment. And I won't be able to take Advil for the exam or for afterwards. And if I want to take Valium (which I do), I need my doctor to okay it.

So, needless to say, please pray. Please pray that I can deal with all this panic as it comes up without repressing it (b/c that flares my Crohn's), but also pray that I can find a way to give it to God and be able to relax during the procedure this Saturday morning (provided my doctor clears me) without ignoring what's going on. There has to be a healthy way to divert my attention, don't you think?

Pray, pray, pray. Breathe, breathe, breathe. Lord Jesus, have mercy.

False Alarm

Yup. I just heard from the nurse today and they got my additional blood work back and my B12 level is normal. So, I don't have pernicious anemia.

Why am I not excited?

I should be! I should be happy that the B12 vitamins have apparently been working. And that's good news because it implies that I am absorbing those nutrients well.

But I feel kind of let down. I mean, I still don't have an explanation for why my hair continues to fall out. And I guess I was hoping that the B12 shots would give me increased energy and brain power and warmth (I tend to be cold). It was great having a scapegoat ("Tired? Don't worry, it's just the pernicious anemia!"). And I don't have an answer for the shortness of breath, though I have to say, I am breathing just fine this week. Maybe I was just stressed and not getting enough sleep.

I could still take the referral from my doc and see a pulmonary specialist, take some breathing tests and see if anything's wrong there. But I don't know. I think I'll see how I feel for awhile and then maybe go in before my HMO runs out at the end of the year if I'm still having problems.

I think that, in general, I need more sleep and more exercise, and the scales will tip back into normality in many areas. Please continue to pray, though.

Bloody nose

Yup, I had two surprise bloody noses this morning. That's all. I thought I would record them here for posterity. I apologize that you have to witness posterity, but oh well.

I thought people with anemia don't have enough blood to go around, much less lots extra to bleed out their noses!

I'm fine now. I think it happened because it's VERY dry here these days and I tend to blow my nose too hard. But I wanted to write it down in case it will be important to remember in the future.

Pernicious Anemia

Yup. My doc thinks I have pernicious anemia.

I went into the doc on Wednesday because of some persistent shortness of breath (breath shortness?) that I've had since Saturday, to the point where I have to concentrate on breathing in and out. My inhaler didn't help, but my peak flow meter (asthmatics own them: you breath hard into it and it tells you if you are taking enough air in) says that I'm getting enough air. So, that knowledge helped some with the panic that I felt about not getting as many full breaths as usual. But I still wanted to see the doctor.

He said I sounded fine, breath sounds and heart rate, no heart murmurs or anything. I was pale but I told him I'm always pale (do I hear an amen?). I'm not coughing at all or having soreness in my chest.

He ordered a chest x-ray, and it came back normal (I got to see it and was stunned at how beautiful it was, how beautiful I am on the inside. ;) It was even cool to see the pocket of gas in my stomach (though you didn't have to tell me it was there)). It was the blood tests (just a CBC, mom-in-law) that came back with this diagnosis.

When the nurse called this morning and said pernicious anemia, I asked what exactly it was, and she said it was a B12 deficiency. I had to ask her to repeat it, because I am taking B12 supplements and have been for a year now. My B12 levels were great the last time I saw blood work, but my husband and I think those results were from before the last hospitalization.

Still, it's frustrating. I'm feeling good, I'm even sneaking a little bit of lactose into my diet and my body is doing fine (i.e., I don't take a Lactaid tablet when I have bread, even though whey is an ingredient). Maybe the anemia is partially due to having NO red meat in my diet anymore. I don't know. As my husband said, this anemia may just be par for the course with having Crohn's Disease.

The nurse said they're going to do some more blood work to confirm the results and I don't have to get more blood drawn; they're going to try and use more of the blood they already took. And then I might have to start getting B12 shots. As the webpage I linked to above says, the prognosis for recovery is extremely good if caught early and if I follow treatment. So, I'll do what I can. Maybe then I can get a good breath of air, and maybe then my hair will stop falling out so much, too. ;)

Not excellent

I'm not feeling excellent this morning, and I felt like writing a post about it. I feel bloated and my tummy is really big. It's unusual to feel yucky in the morning; that's usually my best time (I think because there's so much less food in my body). And I didn't have anything unusual or risky this morning for breakfast, so I don't know what could be causing it, except for the apple pie last night and a VERY cheesy pasta dish last night. But that should have passed, and I took a lot of lactaid pills. Hmm.

I think I'd feel better if I was in an environment where I could release some of this pressure, if you know what I mean.

But I can't.

I'm at work.

Oh well. I'm sure it will pass (tee, hee), but I may have to have a Boost instead of solid food for lunch, just to make sure not to add anything new to the mix. And then I'll probably feel fine.

But in the meantime, I feel not excellent.

Apple

I ate half an apple just now, with much trepidation. I get mixed reports about ripe apples and Crohn's sufferers: they're bad for some, fine for most. All agree that the peel is bad news, so I took care of that right away. But the applesauce went okay yesterday, and I'm hoping I can stand ripe, unpeeled apples in order to enjoy the apple-picking expedition my husband and I have planned for this Saturday.

Not to mention the potential benefits of adding this little insoluble fiber to my diet. ;)

Hard

Please note that this is a pretty personal entry and more for my sake (to remember this journey) than anyone else's. I apologize ahead of time for the candidness. ;)

My latest and continuing frustation in the Crohn's area of my body is this constipation. It's constant, and it reminds me of the time during the first semester of college that I struggled with it for four months (probably because of a drastic change in diet).

I've tried everything--drinking lots of water, adding fiber to my diet (though not insoluble), walking more--and nothing seems to work. I don't want to get addicted to laxatives, but I'm afraid that that's where I'm going to have to go next, because the complications brought on by const. are not good. I won't explain them, and I've probably already shared too much, but they're aren't good.

So, I'm trying some applesauce daily (potentially gentle and insoluble fiber) and trying to walk more and also trying a key thing: not pushing too hard.

Sorry again for the grossness.

Doct Appt Today

A GREAT doc appointment today. It was two months from last time, and the big difference was that I am now OFF steroids (and have been for about a month). So, when the nurse asked me the usual "what drugs are you taking?" question, I only had ONE drug to say: Imuran! Freedom!

The nurse went on and on about how great I looked, how much more energy I seem to have, how my color is so much better. I had to admit to her that my appointments are usually in the late afternoon, after work, and I generally look and feel better in the mornings (at least, after I've fully woken up). But we both agreed that I'm doing better.

And the doc had good things to say (though in his usual flair-less style):

-I told him my main pains in the intestinal vacinity right now are probably related to the fiber supplements I've been taking (5 g/day). He said, "And why are you taking fiber?" Well, I thought I was supposed to be taking it, because it's good for you and because I don't have any in my diet and because I'm getting constipated (there, I've said it) every other week or so. He said that he has a low threshold for getting me off fiber, because it "causes so many symptoms," so if I have too many troubles, I am fine getting off it. I guess I'd rather try and see if it could work, because I don't want to get addicted to laxatives.

-When he asked me the usual "are you having any diarrhea?" (the big Crohn's problem) soon after the fiber conversation, I said, "no, my problems are all in the other direction." (Like I said!) And he said that he was sort of encouraged (not his words) by that, because he said it could mean that my Crohn's is going down a little and my body is normalizing. VERY exciting!

-He asked if I was planning on getting pregnant anytime soon. Good grief! He's only told me a thousand times that I am NOT supposed to get pregnant on this drug! If he wants to remind me, I'd rather he just said, "I just want to remind you that it is not advisable... blah blah blah" Anyway, he's a little annoying, though the bearer of much encouragement today. So, I said, "No, I'm not planning to get pregnant until my Crohn's is much better, but I was planning to--" and his eyes snapped up to mine (tee, hee, freaking him out), and I said "--get a flu shot. Can I get one while I'm on Imuran?" "Yes, yes, get a flu shot." I couldn't help a sucker punch.

-I told him about my hair falling out. Well, it's falling out much more quickly than usual, and I noticed it's a possible side effect of Imuran. He said that we should wait and see how it goes, because it could be a nutrition deficiency, and as I'm improving in health, my nutrition retention will improve, too, and then my hair might decide not to fall out. So, we're keeping an eye on it. Oh well. I'm glad I had a lot of hair to begin with.

So, overall, good news. And the best news: he said I should see him in THREE months! Yay! I've been seeing him every two weeks, then every month, then every other month, and now every THREE months! Very encouraging! Forward progress! Praise the Lord!

I think my challenges now are to figure out the fiber, to get started on the Omegas (yeah, yeah, I know, I'm stalling), and to manage stress. It's been stressful lately.

Thank you for your love and prayers!

Blood report

I just heard from my nurse after some harrowing phone tag. She left a voicemail message saying that she had the results of my bloodwork and I could call her at ... Well, I thought they would call only if something was wrong, so I called right back, and she wasn't there. So, I promptly began to freak out and called my husband, who did an admirable job of trying to calm me down. I mean, there are many bad things that can happen with this drug: high susceptibility to infection, liver damage, and last but certainly not least, many types of cancer.

http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682167.html

However, not to continue to leave you in suspense: my blood is fine. No problems. I can stay on the Imuran (even if my hair is falling out faster than usual).

Blood

Oh, don't worry, I'm just trying to be sensationalistic (is that a word?). ;)

I got my blood drawn, finally, to check on the Imuran/aziathropene and how it is affecting my body. I should be getting it drawn every 3 months. There is a chance, I believe, for adverse side effects on my liver or kidneys or something. I don't remember. I lose track. But I'm not that worried, honestly. I can't begin worrying about the only drug that (a) my Crohn's responds to and (b) my doctor will let me be on. The stress would ruin everything. I have an appointment with him, with my GI, next Friday, so I'll probably find out then how my blood looks, unless it's really bad and they have to call me right away.

I'm feeling good, still, praise the Lord! I am gaining a little weight, which is awesome. I have occasional evenings of minor intestinal discomfort but I can usually create an explanation. It's amazing how much time heals my mind. I'm no longer freaking out about every little gas or cramp I feel. I'm keeping cool, keeping calm and doing smart things: drinking lots of water, walking, talking about things that bother me instead of holding them in ,eating in an atmosphere of calm, etc. And I'm even able to eat things that bothered me just a month or two ago: fried foods, fatty foods, broccoli. Most aren't things I should eat anyway, but at least I don't have to be so hyper-vigilant to avoid them.

Thanks for checking in and for loving me. I hope you are all well, too.

Goals, cont.

So, I started the Metamucil a day later than I planned because I wasn't feeling 100% on Friday and I didn't want to complicate things.

But I have now taken it two days in a row, and things are... okay. I am pretty bloated, though not in pain, and so I decided to ask the GI nurse about it when I called her about blood work for my medication. She said that (though she was the one who said it originally was okay) fiber suppliments are pretty gassy by nature, but Metamucil is known for being EXTRA gassy. Hmmm. I reminded her that I have Crohn's and said I wanted to up my fiber intake b/c I don't get much in my regular diet and was it okay for me to take these suppliment at all? "Oh, yes! Your doc says it's great." But she recommended Citrucel or Fibercon this time, which are a little less gassy but still gentle.

I guess my husband's going to have to finish that big container of Metamucil that I bought in bulk. ;)

Off Steroids

At long last, I post again.

I am now officially off steroids. I've been off them since Sunday, and it's going well! I feel just fine. Whenever I have gas or something irregular, I can generally trace it back to a risky food choice or stressful time. Praise the Lord!

I have some goals for myself in the next few weeks. I say "few weeks" because I am afraid to do them and want to give myself time to build up to them. My goals are as such:

--Metamucil.

I always assumed I couldn't have any kind of fiber, but the more I read about fiber, soluble and insoluble, the more I learn that insoluble fiber is my enemy, not soluble fiber. I should be having soluble fiber for good intestinal health (sometimes weak intestines can be reason enough for surgery) as well as for the reasons everyone else takes extra fiber: regularity, bulking, lowering cholesterol, etc. And Metamucil is a safe brand. So, I'm going to start it tonight. Yup, tonight. And I'm going to see how it goes.

--Omega 3's

"Didn't the dietician tell you about that in July?" Yes, she did. I'm just, well, afraid of trying that, too. I feel lots of fear about putting unknown items down my throat--which makes medicine hard to try out. And honestly, to give myself some grace, who could blame me? Two hospital stays don't make a woman more confident about her health. But I need to try these out. I'm only on one drug right now and feeling good--a person could even say that I'm stable. Perhaps I should try some remedies that could play a big role in getting my health back on track, and maybe even lessen my Crohn's.

--Florastor (probiotics)

I can't use this without a prescription, so I'm going to ask my GI doc about it next time (in about a month). It feels extremely risky, because it plays around with the bacteria in my digestive system. I don't know if I should upset the delicate balance of things, but maybe my balance is off and this probiotic would help. Heck, they give this stuff to newborns.

So, we'll see what happens. I'll let you know.

While taking the Eucharist last Sunday, I had a moment of feeling like I should open my mouth, because when healing comes, it will come into my mouth. Not a prophetic word or anything fancy, just a sense that I need to be open to healing, that I need to be willing to open my mouth, to open my mind, to take risks. My husband felt like healing through my mouth could also mean a healing of my relationship with food, because I'm afraid of food in many ways. It just reminds me that God heals in many ways, and even if He didn't heal my body completely, He may have other ways of healing in mind for me.

Daily

Just a little update.

I'm feeling okay. I noticed that I've felt kind of funky (meaning gassy, etc.) every evening (just before supper until bedtime) for the last week or so. I don't know what that means. Perhaps my body is getting used to not being on as many steroids. Perhaps I'm eating more fiber (which I am half-heartedly trying to do, per my dietician's advice) and that's harder for my body to figure out. Perhaps I'm not doing good stress management.

I always feel fine in the morning, but it makes me wonder. I want to keep an eye on trends, not just assessing myself in a daily manner. If I look back to the time leading up to the last hospital stay, I was doing things on a daily basis that were hard on my body--being stressed, eating beef, cheating on foods. Daily. And because I felt okay on average--not great, but okay--everyday, I figured I was doing fine. It was just in looking back on the time as a whole that I noticed, hey, I had two flares in two weeks. Hey, I was feeling 75-80% everyday for two weeks. Hey, I had just finished an EXTREMELY stressful Holy Week and hadn't taken time to get extra rest or be super easy on foods for as long as I could have. And the kicker--perhaps my Crohn's was acting up on its own accord, regardless of what I was doing.

So, I'm trying to figure out how to keep a small picture and big picture outlook, without overreacting (this is the rub). Breathing...

Mystery

Some mysterious gas last night. Ah, gas stories. Aren't you glad you get to hear them?

Anyway, I don't know why I was having it, but it was sort of sharp, so maybe it wasn't gas. I don't know, but the only reason I can think that I was having it is because we spent the night running around to three grocery stores to get all our groceries, among other errands, and perhaps I wasn't being stressfree in a helpful way to my body. It was that positive stress, the energy of getting things done, but I think I should have been calmer about getting things done (advice I get often from my husband).

Having Crohn's makes me a detective, I am finding out. I had a doc in the hospital this last time that I liked at first because he listened to my medical history and then asked all sorts of random questions that, when we pressed him, he explained had helped him to understand my condition. (We didn't like him much after awhile, because it felt like he was keeping me at the hospital for longer than I needed to be there. Turns out, it was probably okay that I stayed, seeing as I had a flare a few days after I got out and it took me a month to get onto full solid meals. Things were more serious that we'd thought.)

So, I'm doing great, despite the mystery gas, and amazed that my body is handling the lessening of steroids so well. Praise God!