Breath Tests

Because of the gastrointestinal troubles I’ve been having I have to take a series of three Breath Tests.  The first one will test for abnormal bacteria growth in the intestines, the second test for lactose intolerance, and the third for fructose intolerance.  If I have the first they can treat it with an antibiotic, the other two will require a life time diet change.

To start things off I had to go on a low carb/starch diet yesterday.   I can’t eat anything for 12 hours before the test, and then the test last for 3 hours during which time I can’t eat of drink anything.  I’m doing the first test today.  I have had to give a breath sample, then drink a solution, then I have to give breath samples every 20 minutes.  I can finally eat around 1:30pm today.

I will perform the second test on the 28th, and the final one on March 3rd.  So tomorrow I have a normal day, then the low carb day again on the 27th, and the then the test on the 28th….and so on.   During second and third test I only have to collect my breath every hour for 3 hours instead of every 20 minutes.

It will be interesting to see what these tests find.  I’m kind of hoping the first one will be positive and they can just treat me with a pill, and I’ll be fine.  I’m really tired of all the poking and prodding and not finding anything.  I don’t think I have lactose intolerance, but I’ll deal with it if I do.  No matter how much I love cheese!  The fructose intolerance would also be pretty hard.  Can you imagine never being able to eat fruit again?  I don’t eat a lot of processed foods, but just think about how many things have fructose in them.  Again, I would deal with it.  Anything to get my gut working right again.

Right now I’m so very hungry, and I’m tired of blowing in this blue bag every 20 minutes. (The blue bag is attached to a needle that you insert in a test tube and you catch your breath in it.  So at the end of this test I will have 10 test tubes filled with my hot air.)  I now have a very bad headache, and I’m a bit dizzy.  I know it’s because I’m hungry.  When I went to the hospital today to pick up the tests and get instructions, I thought I was going to do the first one there, and then I could leave and eat.  I had no idea that each of these tests last for 3 hours.  One more thing, I have asthma, not bad, but all this blowing, is making it hard to breathe.

OK enough fussing, you can tell I’m hungry, I get a bit bitchy when I want food! : )

I have to say that the people at the hospital were so very nice.  Most of my doctors are at Duke and I’m used to it there, this test was through Rex Hospital in Raleigh.  The intake person was so very nice.  When I explained that I’m hearing impaired and needed her to look at me when she spoke so I could hear her, she really listened!  Most people, hear me, but then they don’t think about it and will talk to me while they are looking at their computer, or they speak really low.  I have to say, most people just have no idea what it’s like to deal with a person who is hearing impaired.  This lady even wrote in red ink on my papers that I was hearing impaired and needed for the other people who dealt with me to look at me when talking and speak clearly.  I’ve never felt so at ease.  Of course, Stuart was with me, so I have my own “interpreter”, but it is just so much easier when I don’t have to look at him after someone speaks to me and wait for him to tell me what they said.  He is wonderful about it, although some people seem to get confused or irritated that I don’t answer them immediately and need to look at my husband to tell me what they said.  I just don’t understand some people.  But today I was very pleasantly surprised at how much I was treated with respect, and courtesy about my condition.   It’s a shame I have to say surprised, but I simply haven’t found many places where the people are just so nice and go out of their way to make sure I can hear them and understand.

I will be letting the hospital know how impressed I was with my visit, especially with Barbara Kiplinger, the intake employee who took all my initial information.

I know she won’t see this, but Thanks Barbara!

8 Days after…still waiting…

image courtesy of http://www.artbywicks.com

I know I haven’t been posting as much as I usually do, and I haven’t been talking about my progress after my Cerebral Spinal Fluid patches, but I just haven’t felt all that different.

I wake up in the morning, and most mornings I feel pretty good.  (that’s not unusual)  I continue to feel a bit off balanced all the time.  As the day goes on I seem to start feeling a bit worse.  I don’t really know how to explain it.  It’s kind of like I’ve always felt, but different.  My head feels full, and I feel like if I moved my head too much I’d barf.  I feel slightly nauseous most of the time.  If I get hot, it gets so much worse.  I’m just not sure what it all means.  Stuart tells Dr. Gray and she seems content.  She says it’s good that I’m not having headaches.  I’m happy about that too.   I sure do wish I would see more improvement.

I do feel like my hearing is a bit better in my left ear, but I still have trouble hearing certain frequencies.  I don’t realize just how much I rely on closed captioning until I don’t have it.

So, my progress so far…not too much.  But I haven’t had any full blown Vertigo attacks!!  That says a lot.  One time I felt like I might start having one, I took a pill to reduce my pressure (like Dr. Gray advised) I was still having symptoms 30 mins later, so I took another one…and shortly afterward I couldn’t stand it any longer and took a Valium and Phenergan.  I started feeling better, but I’m not sure what caused it.

I had a Gastrointestinal CT scan on Thursday.  It was not a fun experience, but it wasn’t the worst I’ve had.  I think I had a reaction to the Contrast they had me drink before the scan.  I had horrible diarrhea starting before I started the 3rd cup.  (you have to drink 3 cups of this stuff, they tell you that, but they don’t tell you the cups are 20 oz.).  Well, they almost had a mess to clean off of their expensive machine.

The other bad thing about the test.  They were also supposed to put in an intravenous dye.  I told the nurse on the phone the day before that it is very hard to find my veins.   So she took me back in the very cold CT room and tried to start and IV, she looked at my arms and said, “Oh, yeah, you told me this would be a challenge.”  I said, “Yeah, I don’t know why people never seem to take me seriously.”  She said she did, she just forgot.  She then said she could see any veins, and she couldn’t even feel anything.  I said, well, it’s very cold in here, they had to use a hot pack last week to help out.  Well they didn’t have that.

So after 5 times of her trying to find a vein, and each time she would say something like, “I don’t feel confident about this, but I’m going to try.”  I felt that was not the thing to say to a patient.  She was very concerned for my comfort, but she was not confident in her job.  One time when she said that and was about to stick me (try number 4 I believe) I turned to her and said, “Honey, You need to get some confidence, you have to believe you are going to do this or you will never be able to do it.  Take control, tell that vein who is boss!  And just do it!  Don’t worry so much about hurting me, I’ve had much worse.”  She just said, “You are so funny.”

OK, well, I do believe, if you believe you are going to fail, you will fail.  It was obvious she believed she was not going to be able to do this and she never did.  Finally, she had to call the radiologist and tell him that she couldn’t do it, he said fine.  We just wouldn’t have that part, if they needed it later, they’d try again.  I said, “with someone else giving me the IV.”  : )

Luckily, it doesn’t seem to be a need for them to do that part of the scan.  Yay!

The results?  I have a Kidney stone!  Well, that was a surprise.  It’s small and not in a place where it’s causing any harm right now, but still, A Kidney Stone…crap.  I just wouldn’t think it possible with as much water as I drink.  Oh well.

The doctor also told me that I have a fatty liver, I don’t have liver disease though because my enzymes aren’t high.  So it’s just fat there because I’m over weight.  I told her, “Well that doesn’t surprise me since I gained 40 pounds in about 2 months, that is one of the reasons I came to see you.”  She said, “A low-fat diet….yadda, yadda….”  I told her that is what I was doing before all this started…she said I still needed to do the breath test to determine if I’m lactose or fructose intolerant.  And then come in for another office visit to reassess.   I told her I’m working with a nutritionist.  She was great!  (I thought, then why didn’t you suggest it?)  Can you tell, I’m not impressed by this digestive health office?

She just keeps telling me to take fiber.  Well, that didn’t work.  I tried.

I’m glad my nutritionist doesn’t believe in a one size fits all philosophy.  She is working with me to figure out the best diet for me, and how to get me healthier.  One step at a time.   Already working with her, my diarrhea has gotten better.  I’m still having it sometimes, but not every day!  Isn’t that exciting??

I’m still hopeful that the patches will work.  Again, one step at a time.

Tomorrow is my hubby’s birthday.  I gave him a gift certificate for a 90 minute massage.  He had it yesterday.  It was so nice to be able to pamper him for a change.  And I’m going to watch the Super Bowl with him.  (I’m not a sports person)  We’ll have fun.  Gluten Free pizza.  Possibly wings. Oh, and Ice Cream from a local Dairy.  (I won’t be having the ice cream, I’m not eating sugar right now, but it’s a great treat for Stuart. Perhaps I’ll put a candle in it.)

A New Patch

I went in to Duke today at 10:30am, early for my 11am appointment, and was taken straight back to see Dr. Gray.  (Dr. Linda Gray Leithe, neuroradiologist at Duke University Hospital.)

At about 3:30pm I was finally on my way home….it was a long day.

Tisseel

First, we went over everything and I signed all my consent forms.  After talking Dr. Gray was pretty sure we’d find out that my pressure was again low, that the blood patches didn’t hold, and that she would be patching me up again today, but this time she was going to be using Tisseel, a surgical fibrin sealant indicated for hemostasis and tissue sealing.  It looks like epoxy.  It comes in a double tube plunger and it mixes when they insert it.   (kinda cool huh?)

So I went through the same thing I went though when I got the blood patches, but I didn’t have to have another myelogram.  They just used the information from the first one.  I don’t have to be as careful after this procedure because this sealant doesn’t have to clot around the leak, it is sealed now.  However, since they put less stuff in I will feel the results more gradually instead of feeling it as quickly as I did last time.

I have noticed I can tell that I am hearing better.  (the TV was too loud! hahaha)  I’m less dizzy that I have been, but I don’t think I’d risk closing my eyes and shaking my head around yet…maybe tomorrow.  : )

Dr. Gray said I could walk around some tomorrow, but as sore as I am right now, I don’t know if much of that is going to be happening.  It’s not horrible, but dang my back hurts.  I hate taking pain pills, but I think I will be taking a couple tonight.

There is still a risk that my pressure may spike tonight, but I have meds to take care of that if it happens.  So far, no headache, so no sign of increased pressure.

When I left Dr. Gray shook my hand and told me that she hoped she wouldn’t need to see me again!  I must say, as much as I like her, I also hope I don’t have to see her again either.  She is such a great doctor.  You rarely meet a doctor who is so up beat and genuinely loves her job.  When you are with her you can’t help but catch the enthusiasm and hope that just flows off of her.

Here’s Sandy coming to check on my recovery:

 

Sandy checking on me.

Tonight my darling husband went and picked up a gluten-free pizza from Mellow Mushroom.  (what a treat!)  Now I’m going to relax on the couch and watch cartoons.  Maybe, we’ll turn on a movie, but right now cartoons are making me happy!

Right now I’m not feeling all that great.  I think the meds aren’t sitting well, and I didn’t sleep very well last night.  I sure hope I start feeling better soon.

I’ll let you know how I’m feeling tomorrow.

Thank you, everyone, for being so very sweet and sending me wonderful wishes.  I really do appreciate all your thoughts and prayers.

*fingers are crossed*

Puncture Tomorrow – Cold Today

A Zen Moment. (a commissioned painting by Wendy Holcombe)

Tomorrow I go in to see Dr. Gray again for another lumbar puncture and possibly having some spinal fluid leaks patched.  They called today and moved my appointment up one hour so my lumbar puncture is at 11am tomorrow instead of at noon.  I need to be there at 10:30am.  Yay, that means I will be able to eat sooner!

Today, I woke up with a cold.  It’s not bad yet, a slight sore throat, nose is running, don’t want to stay awake, head hurts, all brain foggy, achy all over…you know.  I’m a little worried about tomorrow though.  You have to be very still on the table when you get a lumbar puncture (after all, they are inserting a needle between 2 of your lumbar vertebra), what if I sneeze?  Don’t know why I’m worried about that, I’ve only sneezed twice today.

I’m glad I have the appointment tomorrow.  I’m really ready to see if we can’t get this figured out, but I am a bit nervous about having a cold.  Even if I don’t sneeze or have the need to move, I am not going to be comfortable on that table, after all the table is hard and I already ache all over.  However, I do want you all to know that a lumbar puncture is not like it used to be, they do not hurt.  The only pain I really feel is the pain killer they inject first and it’s just a little sting.  Then I feel a little pressure.  But it’s not scary, and it doesn’t hurt.  So no worries.  I’m just a little apprehensive because I don’t feel good.

I will have to find a “Zen Moment” to keep myself calm and still.  (actually, I just didn’t have a perfect picture for this post, so I thought I would shamelessly post one of my own paintings.  *smile*)

I may be a tiny bit worried about having a cold during the procedure, but really, I’m mostly excited to get this over with.  (I really hope they are planning on doing patches tomorrow and not just doing a lumbar puncture.  Truthfully, I just don’t know.)

small update and Sauerkraut recipe

I have an appointment with Dr. Gray on January 28th at noon.

I don’t know why all of a sudden they were able to get me in sooner, but I’m glad.

We’ll find out what’s going on with the Cerebral Spinal Fluid Pressure.  Hopefully, she will be able to get something straight.  Even leveling things out a little would help a lot.  3-4 attacks a week are driving me crazy.  (as you all know.)

On a side note.  I made Sauerkraut today….well I started the making of Sauerkraut today.  I thought I had pictures of it from the last time I made it but I can’t find them.  : (  So I didn’t take any today.  But I will tell you what I did.  It is so easy!!  (especially if you have a food processor) *this recipe was inspired by the recipe for Raw Sauerkraut in the Whole Life Nutrition Cookbook.

Sauerkraut

  • 1 head of Cabbage
  • 1 – 2 Tablespoons of Sea Salt (I use 1, but the original recipe called for 2)

Peel off a few of the out leaves of the cabbage head.  Save these you will use them later.  Chop the head into small enough pieces to fit in your food processor. (be sure to remove and discard the stalk. I really like the center of the stalk, I always just gobble it up.)

Slice up the cabbage in your food processor with your slicing blade. (if you don’t have a food processor you can do this by hand, but it will take a while, you have to cut it up really small.)  Transfer the cabbage to a bowl and toss with the salt.

Here’s the really hard part if you don’t have a food processor.  Remove the slicing blade from the food processor and put in your little plastic blade.  Return cabbage to food processor in small batches just smashing it up and making it all juicy.  (if you don’t have a food processor you need to just keep smashing he cabbage with a mallet until you get a lot of the juice out.  Of course, this is a great way to get your frustrations out.)

Just spoon your juicy cabbage into a clean jar, and cover with those outer leaves you saved from the beginning.  Press the mixture down so the is some juice covering the leaves.  This won’t be hard.  Keep in a dark dry place for 3-7 days, I like to keep mine in my pantry.  (I do put the lid on the jar, but I don’t tighten it.)  Every day you need to press it down some more so even more juice will cover those leaves.  (eventually the leaves will start to just fall apart, don’t worry about it.)  The original recipe says to start tasting it after about 3 days, mine tastes nasty that soon.  Just smell it, if it smell like sauerkraut, then taste it.  If it taste like you like, then put it in the refrigerator the slow/stop the fermentation process.  If you get a funky scum on the top of your sauerkraut, just spoon it off.

I use a wooden pestle from a mortar and pestle that I have to press my mixture down every day.  Since I don’t use this mortar and pestle any more, I use it exclusively for this, now it smells like pickles.  : )  If you used a pestle made from a different material, or perhaps a mallet, you probably wouldn’t have this problem.

They do make crocks just for making sauerkraut, and I’ve seen much more complicated recipes, but I’ve never tasted better sauerkraut.

I may make it a different way some time, I may even get a fermenting crock so I can make more than one head of cabbage at a time.  But for now, this method does well for me, I just start a new jar before the one in the fridge gets empty.

(If I find those pictures, I’ll post one.  Maybe I will take a picture of the jar I have started at least so you can see what it looks like.)

Do you ever wonder?

What you are about to read is very personal.  I’m not even sure if I should be writing it.  Please, do not judge me, and do not pity me.  I will get through this, but I hit a big bump in the road today…and found out it was a sink hole.  It’s going to take some work to pull myself out.  But I know I can.


Do you ever have one of those days when you wonder if it’s even worth it?

Yeah, you know what I mean.  The thing you don’t dare talk about.

How can I think that way?  My life isn’t that bad.  There are so many people who have lives that are so much worse than mine….but maybe, just maybe, they are stronger than I am.  Or maybe I just want to feel like someone who can do something is listening.

I had the most lovely dream last night, I won’t go into the details.  My husband just doesn’t understand why I let dreams get to me so much.  It’s just a dream…but I know it’s my subconscious trying to tell me something.  Some way to help.

Then I woke up, and realized that I was still here.  And dang it, I can’t hear again.  Then Stuart tells me that he talked to Dr. Gray’s appointment scheduler, and they were trying to get me in sometime in January, but it just doesn’t look like it’s going to work and they don’t have their February calendar open yet.  What?  It’s the middle of January, and you can’t give me a February appointment?  That is just too frigging unbelievable to me.  And yes, I know that they are busy, but I’ve been trying to get someone to help me since December 4th.

Well, everything went a bit down hill from there.  And again, I won’t go in to any more details.  But today has been a very bad day.  After my complete melt down, I tried to sleep.  I kept waking up. I was having the weirdest dreams…these dreams I don’t think meant anything.  They were just weird.  One dream, I was stuck looking at a recipe on how to make Sauerkraut.  I know how to make Sauerkraut.  I just told my husband today that I needed to start a new batch tomorrow, but I don’t think I needed to just stare at the recipe for the whole time I was asleep.  Another dream, I missed jury duty because Stuart told me it was the wrong date, and they were going to arrest me.  In that same dream dog poop was legal tender.  They didn’t understand what checks were.  I was so confused, and so grossed out at the same time.  (but dogs were treated very well)

I’ve cried so much today that I feel like I have blisters around my eye lids.

I scared my husband today.  I feel so bad.  I do wonder if it is really all worth it.  I very logically think.  The problem is with me.  If I were not in the picture the problem would be gone.  Simple.  He completely freaked.  I’ve never seen him so freaked out.  My husband is always so calm and collected.  When I’m having an attack and thinking the world is ending he is my rock, and I saw the rock cracking.

I guess the problem wouldn’t be gone for him, not like I thought it would, I just never believed anyone could care for me that much.  I need to realize just how it would hurt him more if I were not here.  I may be a lot of trouble, but I’m his trouble, and he’s much more willing to deal with that than dealing with not having me here.  My mother died over 17 years ago and I grieve for her every day.  I never want my husband to hurt that bad, and I saw that horror in his face today.  I have to find a way to deal with all of this better than I have been.

Some days I feel so strong.  I feel like I can handle anything.  Then other days it will only take a feather to knock me over.  On most days I will think, how could I even think about such a thing?  But then everything will just come crashing down again.  I don’t feel like I hold things in.  That I don’t allow myself to feel.  But my husband and therapist say I do, then everything comes down at once.

Things will get better for a while now.  I know they will.  But I really need to be careful and not let things build back up like this.

Stuart and I are going to work very hard to find an outlet for us.  To try to not stay cooped up in the house all the time.  We need to find a place where we feel safe, welcome, and where there are people who have similar interests that we do.

Please, don’t worry about me.  I’ll be fine.  I have a good support group to help me.  I’m only writing about this, in case it may help someone else who may have some of these feelings.

Accomplishments

Sandy out in the snow.

The last couple of days have been filled with accomplishments.

  1. The biggest one first. Yesterday I didn’t have to take Valium or Phenergan all day long.  (I did take it once today, but only once, I’m not positive I needed them, but I was starting to feel a little dizzy and better safe than sorry.)  That’s a huge improvement.
  2. I made dinner last night.  To read all about what I made, check out my blog post on Wendy Cooks.  (a little teaser here: it includes Acorn Squash and wild rice.)
  3. I cleaned up the kitchen today.
  4. I completed messed up the kitchen again today.
  5. I made experimented with dinner again, and made something that I was very pleased with.  I will post about it on Wendy Cooks tomorrow.  (Yes, I made Pesto out of Kale! can you believe?  I served it over penne pasta and grilled chicken…you must see the photos, I promise I will post them tomorrow.)
  6. Stuart talked to Dr. Gray today, and she is setting up an appointment for me to come and have another lumbar puncture (also known as a spinal tap.)  She mentioned that my pressure may still be a little high, but the Diamox is just too strong and they might put me on Topamax instead.  Stuart mentioned that my psychiatrist just put me on Topamax, and she thought it was interesting that within the past few days I’ve started feeling better.  They are now taking me off of the diuretic that I’ve been on from Dr. Kaylie.  (I feel like such a trial and error patient….let’s see if this works…nope? well how about this?…a little…well how about this….)  I guess we’ll see what the lumbar puncture says.

When I look at my little list it doesn’t look like I really got all that much accomplished, but I really do feel like I got a lot done.  I didn’t have to lie still on the couch pumping in drugs praying not to throw up.  I even let the dog out a few times and didn’t have to call Stuart down from work to do it.

Oh, and we had another winter storm here last night.

This winter has been very unusual here in Durham, NC.  It’s never this white.

Looking Inside

There is nothing like having a camera stuck down your throat.  Yes I have a sore throat now, and my tummy is not feeling great.  I think they topped the gas off too.  Whew!

Well, this test shows I have Acid Reflux, and a little Gastritis.  (he still wants me to have the CT scan to make sure my bowels aren’t doing something funny where the cameras just don’t reach.  I thought, geez, you put a camera up one way, now you’ve put a camera down the other way, you mean there is still more you can’t see?)

My official paper that he gave me says that my “Z-line is irregular, 37cm from incisors”, and I have “Gastric mucosal abnormality characterized by erythema.  Biopsied.”

Ok, so I looked up with a Z-Line Irregularity means.  It mainly appears to mean that it shows I have acid reflux, but I’ll know more after the biopsy.  And the 37cm from incisors is just how they measure where the Z-Line starts in people (or maybe where the irregularity is).  Mine is 37 cm (or 14.6 inches) from my front teeth.

The other part: “Gastric mucosa abnormality characterized by erythema.”  Simply means I have a little bit of gastritis but it’s not bleeding.  Erythema means that it’s read and inflamed but it turns white when you press on it, so no bleeding.  (hopefully)  It also sounds like I have a bit too much mucus.

He put me on Prevacid.  I’ve been on this medication before, for years actually.  I don’t like being on this for so long, but I’ll do it for now.  He also told me to follow an anti-reflux regimen indefinitely.  That should be fun.

This is the Anti-Reflux Diet:

NO:

  1. Caffeinated Drinks
  2. Carbonated Drinks
  3. Greasy or Fatty Foods
  4. Spicy Foods
  5. Citrus fruits or juices
  6. Tomatoes or tomato bases
  7. Onions
  8. Peppermint
  9. Chocolate
  10. Alcohol
  11. Nicotine.

Ok, so most of these are no big deal for me, but NO TOMATOES?  or even worse NO ONIONS?  If you have read my recipes you will know that I cook with onion and garlic all the time!

What I can eat and drink:

  • water or herbal tea
  • Skim milk, low fat milk, low fat yogurt, low fat or fat free sour cream and cream cheese, and low fat cottage cheese  (WAIT A MINUTE HERE, THEY DON’T MENTION ANY REAL CHEESE AT ALL, NOT EVEN LOW FAT CHEESE…I DON’T THINK THAT’S RIGHT.)
  • Any Plain raw, baked, broiled, or steamed vegetable, Except Onions and Tomatoes.
  • Any Plain Raw, Broiled or baked Fruit (Except Citrus)
  • Any Plain Baked, Broiled, Steamed lean beef, pork, chicken, poultry, or fish.
  • Any low fat bread or Cereal, plain rice, plain pasta (Of Course, I can only have the Gluten-Free Version of these.)
  • Low Fat desserts (less that 3 grams of fat per serving)
  • Any fat free or low fat soup without tomatoes or onions.

This is going to be a challenge.  The biggest challenge will be, No tomatoes (I love a good tomato sauce, I can’t stand them raw, but I love a good sauce.)  No Onions!  Oh my goodness.  What will I do?  I found there is an Indian herb called Asafoetida that when used in cooking gives the flavor of onion and garlic.  I guess I will try that.  Supposedly before it is cooked it smells like stinky feet and poop…that should be interesting.  Oh, and cheese, that will be hard.  But I guess I can use vegan cheese.  I do like the Dayia Cheese.

As I said, a challenge, especially since we have a lot of cheese in the house.  🙂  Hopefully, it will make my tummy feel better, and I can stop running to the bathroom so much.  That will make it all worth it I guess.

Digestive Health

My tummy doesn’t feel good.

As I’ve mentioned before I’ve been having gastrointestinal issues for the past few months.  I’ve been thorough a battery of test, including a colonoscopy, but they haven’t found anything.  Now I’m in for even more test.

I have to have Breath Tests done.

The Hydrogen Breath Tests I will be having will be checking for Small Bowel Bacterial Overgrowth, Lactose Intolerance, and Fructose Intolerance.  It will be interesting to see if these test find anything abnormal.  (being fructose intolerant would be pretty difficult, but at least I’d know what the problem is.)

I’m also going to be having a CT- Endoscopy.  They are going to give me this dye and take pictures of my upper GI tract,