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Category Archives: Doctor Journal

IV

Good grief….can’t my body just figure this stuff out? Two IV’s ago I had this massive dose of energy, so much that I felt I my body couldn’t keep up with how fast my insides were going. This time, I not only DIDN’T have energy, I had a huge crash just a few short hours after the IV. I felt crushed with how tired I felt, inside and out. Then, my joints started to ache. I know from past experience that when my inflammation is really up, I start to feel it in my joints. First, my right knee, then, if I don’t catch it and get some Tylenol, it goes to the other knee, my hips and last night, even to my right shoulder. Ugh!!! I’ll have to call the doctor and report these changes, and make sure we had the right mix. With the energy level, it could be that my body is ready to move past 50% of dosing strength in these IV’s. That would be cool. With the joint pain? I’m not sure if that was related to the IV, but I can’t think of much that I ate that would have caused a flare-up of inflammation. Hmmmm…..

At least I didn’t get a headache from this IV. Though….we might have figured out a connection. For two IV’s back in the Fall, I had a glass of wine the night I got the infusion. And then I would get a headache (I don’t normally get headaches with a glass of wine). When I mentioned it to the doctors last time, they both said the wine could be a trigger, because of the sulfites in it. I remember, when first diagnosed, that I looked up sulfites and why I should stay away from them. But now, I can’t remember why. I’ll have to look it up again, just to refresh my memory. Anyway….for the last two IV’s I have not had a glass of wine anywhere close to the infusion, and that seems to be helping. Last night I had just a nibble of a headache, but then it was gone in a flash. If we have the headaches taken care of, I might be able to up the dosage, and then maybe even spread these out a bit. I don’t like being tied to a chair for an hour every 3 weeks with a needle in my arm. I’ve got stuff to do!!! 🙂

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Posted by on January 10, 2012 in Crohn's Journal, Doctor Journal

 

Turbo!!!!!

I’m always amazed at my energy level after getting an IV drip.  It’s like a caffeine rush, but without the jitters.  I wonder…is this just a normal amount of energy that a normal, healthy person usually has?  For me, it’s like my body wants to run everywhere, and never get tired, and not stop for hours.  Typing here, I keep making mistakes because my hands can’t type as fast as my brain is going.  🙂  It’s a good feeling, trust me!  I like feeling that I have the energy to tackle the laundry, dishes, kids, homework, work, husband, etc. and not have to constantly tap in to my reserves of energy to do it.  Take these past two days for instance:  I was a substitute teacher in a Life Skills class for two days.  I’ve come to love and appreciate these special kids for who they are and what they can do.  But….it takes a ton of energy.  Keeping them on task, watching out for the physical attacks that can come when one of them gets angry, watching for those that like to run away or touch everything when they shouldn’t, cleaning after eating, potty breaks/accidents, and on it goes.  There is a constant stream of things and kids that need attention when working in these classes.  Normally, the day after (which is today) I would be crushed with tiredness.  Not today!  I had the IV, and I’m feeling like I can actually get the huge pile of laundry and dishes done, as well as possibly give my own two kiddos the piano lesson that we’ve been needing to do for 2 weeks.  Having the IV simply means……that I can be me again, if only for a day.

The crash will come from this, probably tonight or tomorrow.  It always does.  My body is messed up/injured enough inside that the energy won’t stay for long.  But that’s okay.  I’ll take what I can get…..

On the technical note…..we backed the dosage back down to 50% strength.  3 weeks ago we bumped it up just a few percentage points, and I got headaches again.  We don’t want that, so back down we go to a level we know I can handle.  I really wish my body could tolerate more.  I really want to be getting the full dosage of these good things each time.  But for now, I guess I’ll just appreciate what I am able to do, and move on with life.  🙂

Oh….we took blood today.  My thyroid antibodies were up 3 months ago, meaning the Hashimoto’s was flared up and attacking again.  We also tested for white blood cells, which I guess were low last time.  Hopefully everything will look good and things will be getting back to normal.  I’ll let you know!!!

 
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Posted by on December 1, 2011 in Crohn's Journal, Doctor Journal

 

IV #3

Well rats.  This is the third IV I’ve had since being able to get back on them.  Last year I stopped because of money, and headaches that they were giving me.  This time we bumped up the dosage just a titch, and I woke up with a headache in the middle of the night.  It’s still here.  Not as bad as what a full dose would give me, but I’m still disappointed that it’s here.  It tells me that my body is still not tolerating something in the IV’s, which stinks.  There is so much in them that my body could really use to keep everything under control, that I was hoping not to have any bad reactions.  Stink……

Ah well…the headache should be gone by tonight, if the past is any indication.  I just called the doctor to tell them about this complication, so that when I get my next IV in 3 weeks we can dial the dose back to 1/2, or just be aware and watch it.  I’ll also get my blood drawn on that day to do thyroid tests, which I’m excited about.  I want to see if these IV’s have actually calmed the little buggers down that have been attacking me these past few months….. 🙂

 
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Posted by on November 9, 2011 in Crohn's Journal, Doctor Journal

 

IV time!

Today I had my second IV of this round.  I’m going in every 3 weeks right now, with the goal to get everything stabilized again and then do a maintenance IV every 6-8 weeks for the rest of……forever…..until healing is seen.

It’s worth it to me.  This doctor knows what he’s doing with this stuff.  It worked to get me healthy in the first place, and I’m looking forward to things leveling out once again.

This one went pretty good.  The doctor had me on a faster drip, so it only took me 45 minutes instead of 90 to get the whole bag in (this is a very good thing….I have trouble sitting still and not being bored!!!).  We are still at just half-dosage of everything until we make sure my body will tolerate it.  No more migraines, please!!!  So far, this one has done well.  I learned though that if I am overly tired, the IV will not be able to compensate for that.  Usually I get a huge energy boost from it, like 12-36 hours worth.  In the past those energy boosts were somewhat comical in how amped up I was!!!  During those times, I just feel so alive it’s pretty cool.  🙂  This time, because of the past week exhausting most of my reserves, the IV only gave me a  minor boost for about 2 hours.  Then I crashed.  The good thing is, besides all the good stuff in my now, that I only got a very minor headache.  Last time I had a minor headache, and this time was the same.  It could be from so many different things, so I’m not sure we can blame it on the IV.  But, it has happened twice, so I think we need to take that into account.  Which ultimately means….I won’t get up to full dosage just quite yet.  That’s okay, because even the 1/2 dosage gives me so much good stuff that I need!

That’s about it for now!  I’ll keep you posted…. 🙂

 
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Posted by on October 19, 2011 in Crohn's Journal, Doctor Journal

 

IV Update

Well, it looks like this IV did just fine!  I had twice on Tuesday just the barest smidge of a headache, but nothing more than what a normal one would be.  I’m not sure if it was due to the IV.  The only other thing was the crash.  Because these IV drips give me so much energy, when I come back to what is “normal” for my body right now, it seems really low.  This IV energy boost only lasted about 6 hours, so by Tuesday night I was dragging, bad!  It’s kinda continued through Wednesday, and I’m thinking that today I should start to get back to normal.  Kinda stinks, but the long-term benefit of these IV’s is worth it.  Once I get up to the full dose in the IV bags, the energy boost will likely last about 48 hours.  Those are the days that I schedule a TON of work to be done by me, because I know I’ll have the energy to do it!  🙂

The next IV is in three weeks.  The plan right now is every three weeks, and then when things calm down in my body and level out, we’ll stretch the IV’s out a few more weeks until I’m at a maintenance level, probably one IV every 8 weeks.

 
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Posted by on September 29, 2011 in Crohn's Journal, Doctor Journal

 

Weeee……IV!!!

I got hooked up this morning for my first IV drip in about a year!  I had to drop them because of money, and the last one gave me a crippling migraine for 24 hours.  I was a bit nervous with this one as I wasn’t sure how my body would react to it.  We are only doing half-doses of all the good stuff, and we will slowly build my body back up to the full shebang.  I’m REALLY looking forward to being back on these fulltime again.  They give my body so many of the good things it needs (vitamins, minerals, anti-inflammatory drugs, and more!), and I believe they were instrumental in getting me back to health.

What are they?  It is called some big official name like “immunomodulation.”  It’s also called nutritional therapy because, with Crohn’s, your body does not absorb all the nutrients it needs and this gives it a boost, straight into the veins.  We needed to get me back on these because of the Hashimoto’s auto-immune response going on inside of me right now.  It’s back up to levels that indicate a pretty decent attack is happening against my thyroid, and we want to stop it before it gets much worse.

In the meantime….my body seems to be reacting well to this one.  No hint of a headache.  Hooray!  They one thing I forgot about was the boost in energy.  I feel like I’m racing around and have so much energy, which is great!  I just don’t have enough hands and arms to take advantage of it.  Sometimes, after these shots, I feel so….normal again.  I have a “real” amount of energy to work with.  I forget how tired the Crohn’s can make me….

The other funky thing about these shots, and I’ll just be real here….is the flourescent pee.  I’m not kidding!  For some reason it’s just really, really, really, fluorescent yellow for about a day.  Probably TMI for some of you, but that’s okay.  I like to be real.  🙂

 
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Posted by on September 27, 2011 in Crohn's Journal, Doctor Journal

 

Blood test results, thyroid

The latest results are in and, drum roll please…..my thyroid seems to be working A-okay!  Hooray!  Then why, I asked my doctor, am I still having anxiety and racing heart, which is not normal to me?  Well…there is a perfectly good explanation for that…..

Basically, even though my thyroid levels are where they should be, the little auto-immune buggers that attack my thyroid continue to ramp up their attack.  It’s an auto-immune disorder called Hashimoto’s Thyroiditis and it basically entails your body attacking the thyroid gland.  This number has been on the rise the last few tests, which is not what we want to see.  The doc told me that if we don’t get it under control (and it’s about as high as we can go before it tips the scale to the bad side of what we don’t want) it could lead to a Crohn’s flare.

Wonderful!

I’m joking……but in good spirits.

When I was able to keep up with the full regiment of homeopathic treatments, everything was kept pretty level.  The symptoms were almost non-existent, the blood tests kept coming back level, and the inflammation went away.  With these auto-immune diseases, it’s a constant balancing act to keep things as level as possible, for as long as possible.  Right now I’m feeling okay, but I know I’m not as good as I was at this time last year.  Bummer….

So, the process I need to go through now is getting back on the IV’s once every 3 weeks.  These will give me a boost of much-needed vitamins and minerals and more importantly, will have a big anti-inflammatory component that should help in calm down the attack that’s going on right now.  I’m hopeful to catch it soon so that it doesn’t turn into anything worse!

Ah well…..it’s all for His glory anyway!  Life is just fine…regardless of what this silly diseases throw my way!

 
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Posted by on September 21, 2011 in Crohn's Journal, Doctor Journal