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.)


3 thoughts on “8 Days after…still waiting…

  1. Someone needs to tell those people that “3 cups” is a standard measurement. Respect the measurement!

    I’d like to see what happens when you try putting a lit candle in ice cream.

    Stuart did seem very relaxed afterward. He actually seemed more chipper than I remember him being lately. And I just realized I forgot to wish him a happy birthday. Tsk.


  2. Hi, I’m playing catch-up with the blogs I read. It seems a lot of us our doing the mid-winter meh and waiting for spring. But, on to the important thing.

    Happy belated birthday Stuart!

    No headaches or full-blown vertigo is great. I don’t get nausea that often but the full head, feeling hot (not just menopause) and the off-balance sounds like my days as well.

    While I wish they could come up with a test or some tests to help diagnose everything so I could get a diagnosis, I don’t miss all the testing and blood work that was done. Most of the time everyone was really, really great but you get that one person who just makes you shake your head and makes you wish they had confidence in their abilities and their collegues.

    I had a test where your kidneys are scanned, you come back 2 hours later and get radioactive dye injected and you are scanned again. When you come back , you are given a pill to help make the dye easier to pick up on the scan but it could make your blood pressure drop. A nurse checks the pressure every 15 minutes and a some randomly-picked doctor will come and check in on you as well.

    The doctor asked me (while holding my file with the internist’s request and reason’s for the test) why I was there! I think I said as my first symptom that I had really high blood pressure. The doctor starts “enlightening” me that high bp just sometimes starts and shouldn’t be a reason for this test.

    This test day is only about eight or so months after I first became sick. I still get light-headed easily and I’m in the hallway on a stretcher so I can be laying down and the doctor is basically questioning my internist, one of his colleagues who, by the way, also taught at the university. Not a dumb guy but who will also admit that doctors didn’t know everything which was refreshing to hear.

    I look at randomly-picked and unprofessional doctor and remind him that he has the request in his hands, he can see the reasons and obviously my doctor felt this test could help with getting a diagnosis for me! He mumbled something, wished me luck and walked away. I just don’t get why some of them act the way they do because it doesn’t seem like they are having a bad day. Job stress, insecurities, I don’t know.

    I’m going to try putting a pretty picture of some tulips here to help with the mid-winter mehs, we’ll see if it works.

    Is it spring yet?


    1. I get asked why I’m getting the diagnostic tests done every time I go in for one of these GI tests. I want to say, well, if you don’t know, perhaps I’m in the wrong place. I mean, after all, my doctor should have sent the orders with all the reasons and such, if you don’t have that, then I must be in the wrong place.

      I’m so ready for spring. We’ve had a couple of days that were so nice, now they are calling for snow tomorrow. Or at least it will get very cold. : (

      Thank you for the tulips!! They are one of my favorite flowers!!


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