My Health #8 - Wednesday, August 17th

Yesterday I called and scheduled my ambulatory EEG.  I was to be at the LRDC at 8am to get hooked up to the monitor.  I went to bed early and got up at 4am and left the house.  The timing was good.  I got to the clinic at about 7:45.
They got me right in, and I was officially ‘testing’ starting at 9:00 this morning. I am supposed to push a little button when I feel that I am going to have or have just had a ‘spell’ so that they are easier to track on the readout.  I am also keeping a required journal of what I do all day, especially eating, going to sleep, or waking up.  I can’t get anything wet, so I am taking bird baths.  I try never to miss a relaxing shower or bath. Big bummer there : )   No scratching my head.  Yeah right. I am doing my best; that’s all I can say.  No chewing gum or candy, plus lots of other obvious rules not worthy of listing.
I got out of Little Rock as fast as I could.  I came over to the motel and they were kind enough to let me check in 4.5 hours early.  This was a very good thing, because 4am is not my favorite time of the day to get up.  While going to sleep I did have my spells.  I pushed the ‘event button’ every time I had an episode until I fell asleep.  Really the only time I have them is when I am trying to go to sleep or when I am just waking up.  When I woke up at around 2:20, it was to a really weird, and a little freaky dream.  I was startled awake by it.  It  is too weird to describe and I don’t remember most of it.
I am a little mad at myself.  I was so on top of everything.  I had packed everything I needed, had the GPS on my phone to guide me to the motel, had remembered my phone and laptop charger, and even a hairbrush I didn’t need.  I brought all my medicines….except one.  Now I am on a quest to get my medicine at a Wal-Mart here in Maumelle.
I have to be back at the Clinic at 9 in the morning.  More on tomorrow—tomorrow.

August 10th
I woke up early because even though my appointment wasn’t until 9 am, I am used to hopping in my car and driving 1 mile to work.  No traffic.  Today I would be hitting Little Rock during rush hour in the middle of a storm.  I thought it best to play it safe.
I woke with a bad headache and oddly bad heartburn.  Didn’t bring any tums.  Added that to the medicine list for later.  I wanted to make sure I had plenty of time to get to the clinic.
Then, as I began to get ready to go, it started to pour down rain.  I have wires and water soluble glue all over my head, and no umbrella.  So, I carefully planned.  I ate breakfast in the motel room (I packed food to save $ : )), I got dressed and ready to walk out the door wearing a hand towel on my head, and a ball cap on my hand towel.  No sooner than I opened the hotel room door, the rain abruptly stopped!  I laughed out loud.  God is so funny sometimes.  He wants me to be sure that he stopped that rain just for me.  He has totally been with me this entire trip.  I wore my getup to the car anyway, just in case.  He is a good God, but Satan likes to try to mess up my groove sometimes, and I didn’t just fall off the turnip truck.
When I got to the clinic-a full hour early-It wasn’t raining at all.  And at this point can I just say that the GPS on my phone is the best thing ever?!  It totally takes all the stress from the drive. Even on a really stormy morning right in the middle of Rush Hour!  It takes the guesswork out of the route and allows you to focus on what’s going on around you.  I never really had the chance to use it before this trip.  Awesome.
I digress.  So, the EEG tech got me in early and checked my leads. She said I was doing an excellent job taking care of them, and she sent me out the door 25 minutes before my set appointment time and said that I could come in anytime between 8:30 and 10:00 tomorrow, so if rain is in the forecast I don’t have to worry so much about my leads.
I went straight from the hospital to the Wal-Mart I had called about my prescription.  I arrived there with my GPS at 8:57 am and the Pharmacy opened at 9am.  I got my tums and a little composition book for my medical journal they are having me do, because I am Wordy Gertie, and one sheet of paper wasn’t working for me.  I also got some nail polish.  Got the medicine and headed back to the hotel.  I ate lunch in my room, watched a little T.V., played a little facebook, and laid down for a nap.  My head had been hurting pretty badly all day so far, and I was ready to have some rest.
I finally laid down about 1 pm, and was awakened in terror just before 3 with a TERRIBLE nightmare. I do remember this one.  It was like I was watching a video on youtube where an old friend of mine who I haven’t seen or thought of in years died in a crash while leaving his wedding.  Then I was the person filming the video. Then I was in the vehicle.  I haven’t seen him since we were teenagers, and I don’t even know if he IS married.  It was so strange. I won’t even share anymore details.  I don’t want anyone else to have a nightmare.  Let’s just leave it at “It was a really freakin’ scary bad bad bad bad dream and I don’t ever want to think of it again.”  I looked for him on facebook after I stopped hyperventilating.  I didn’t find him, but I did find his mom.  Maybe I’ll look again later.  It may be silly, but I think I would feel better if I found him.
For about an hour after the ‘awakening’ I was really suffering with a severe migraine.  I finally took something for the pain.  I don’t like to do that if I can manage through them with just rest and dark rooms, but this one wouldn’t relent.  The pain has eased some now, and my body is relaxing from the stress.  So strange.  Maybe I am watching too much television, but I don’t really think HGTV and Food Network would cause a dream like that : P Also, I didn’t have that one medicine last night, so I took it and my other medicines a little while ago.  Most of my medicines can cause problems like that if I miss a dose.

August 13th
As you can see, I was unable to finish my journal during my trip.  The last of the 10th was fairly uneventful.  I did get out of the motel room and cross the street to McDonald’s for a Mocha Frappe’  That totally hit the spot.  I bet the caffeine showed some interesting things on my EEG.  I then talked to my hubby on the phone for a while before hanging up for the night and playing on Facebook and watching TV.  After my horrible dream from earlier in the day, I was reticent to doze off.  But alas, I succeeded at nearly 2 a.m.  I woke up the next morning feeling un-refreshed, but looking forward to going to the clinic to be set free of my gluey and tapey and wirey and itchy bonds.  I didn’t have to be there until 10, but I made it at 9:15.  The lady at the front desk looked at me funny.  It was like she wanted to say ‘two days in a row? An hour early? Can’t you tell time woman?”  I answered her unspoken question.  I simply said “Bad Weather.  I’m not used to driving in Little Rock, so I wanted to give myself plenty of time to get here.”  She just nodded and I had a seat.  Once the bonds were cut, I headed out of Little Rock, very happy to be going home, but very tired.  The headache I carry about with me was getting worse.  I’m not sure what is causing it. I am beginning more and more to think that stress is my disease.  I do know because of my MRI that my brain is beautiful and unscathed. So apparently we will have to look elsewhere for the problem.
August 16, 2011
Yesterday I contacted LRDC to find out if the Neurologist had read my EEG.  He had.  It was normal.  Two days of exactly the symptoms I have been struggling with, on record now—and the test is normal.  I don’t mean to sound upset, but I just hoped that I could get an answer and not have to keep this up.  On the bright side, everything about my brain is normal except that the pressure from the spinal fluid inside is a little too high, which causes the daily headaches, assumingly for the past many years.
Alas, however, I am not any closer to finding the answer as to why I am having what the neurologist is calling myoclonus.  Myo=muscle. Clonus=Jerks.  But even that doesn’t really give a diagnosis but rather names a symptom that must be attached to the problem.  So, now I have to go back to Little Rock and see My Neuro on Sept. 7th.  We’ll go over the results and decide what to try next.
In the mean time, he would like me to go from once to three times per day on a medicine that knocks me out.  Not keen on taking medicine that will make it even harder for me to work.  I think I’ll hold off at least till the weekend to try that.  Experimenting with dosages during the work week has not been historically wise.  Also, it seems counterintuitive to treat something you haven’t yet diagnosed.  I have to admit that the klonopin did help really well for a while, but just with any mind affecting drug, they begin to work less well.  Additionally, the tremors feel stronger than they did, and are breaking through the medication.  I’m just not sure I want to put myself in a stupefied state to treat a condition we can’t pinpoint.

So, I guess this chapter gets a sign-off with uncertainty about what’s to come next.

My Health #7 - Friday, August 5th

I was lucky enough to get in to see the neurologist in Little Rock on the 3rd, rather than the 15th.  He prescribed Diamox, which is a diuretic to help decrease the pressure in my skull. I started taking that last night.  The medicine is normally prescribed for altitude sickness.  I have had three doses.  One last night, and two today.  I am not planning to take a fourth.  Each time I take the pill I get a severe and miserable headache within 30 minutes that lasts between two and 10 hours (so far) and also comes with nausea and flu-like muscle aches all over.  I guess that medicine isn’t going to help my headaches either.

He is revisiting my convulsions, which are breaking through the currently prescribed dosage of seizure medication.  He also said that some of my shaking and muscle weakness is due to the different types of depression medication I have been taking since I was 22 years old (ten years. wow.).  There was no discussion yet of taking me off my current medication, but he did say that the more violent jerking, or what he thinks is myoclonus, which loosely means muscle turmoil, is not as likely caused by the depression medication anyway.

So, he wants me to do a 48 hour ambulatory EEG.  That’s just a fancy way of saying I get to go home for two full days with wires glued to my head and a little machine that reads my brain waves constantly for all that time. There’s just one problem with that.  They want me to come in every day after they ‘hook me up’ to check and/or change my battery to ensure that the test completes properly.  Also, if I were to go to work during this time I would have to wear a turban or other head covering so as not to freak people out :) I am not looking forward to driving to Little Rock something like three days in a row.  The main reason is that I can’t afford to.  The other reason is that it is way too hard on me to make that trip that often.  My other options are to check in to a motel close by or just check into the Hospital and get hooked up and just wait for something to happen on the EEG.  I''m not sure what to do yet.  Money is a huge obstacle. Plus, I am going to have to miss more work either way.  This has been a heck of a summer.  I would appreciate all your prayers.  This isn't over yet.

My Health #6 - Tuesday, July 26

Today is July 26th.  I haven’t smoked a cigarette since July 4th, and haven’t taken the Chantix medication since the week before last.  I think that my quit has been successful!  I don’t crave nicotine, and I don’t mind being around others who smoke.  I didn’t even trade one bad habit for another so far as I can tell.  That, amongst all of the pain and frustration of this summer has been the highlight, and a feat of which I am extremely proud.  I have always struggled with self-control.  By taking the Chantix, I helped to remove the chemical addiction so I could focus on removing the bad habits and experiences that made me want to smoke.
My health is actually improved at the moment too.  Topamax may be great for some people, but for me it was like living life in a complete fog.  I had to back off the dosage little by little to get off of it safely, but now that I am no longer taking it, more than half my symptoms have disappeared.  I am no longer hyper sensitive to light, and no longer have severe eye pain.  I am no longer mixing up words and forgetting things, thus causing me to repeat myself quite a lot.  I am no longer getting lost in familiar places.  I can complete a thought and a sentence.  I am very fond of my intellect, and giving it up for pain relief that wasn’t forthcoming after nearly two months was just not going to do.  So, if you have used Topamax before and you swear by it, by all means recommend it to others.  As for me, I wouldn’t take it again even if I had no other choice.  Oh, and Icksnay on the Imitrex, too.  Yuck.
Now as for pain, I still have spades of it.  In my head, behind my eyes, at the back of my skull, through my neck and shoulders, especially on the right side; and an odd ‘pinched nerve’ feeling in my lower spine that affects either one leg or the other, and sometimes both at the same time.  Muscle relaxers help the most, but I have to wait to take them until I am at home if I expect to get anything done at work.  Other pain medicine doesn’t really do the trick, and can cause me to actually get a worse or ‘rebound’ headache.  So, unless the pain is unbearable, I try to do no medication.  The best thing you can do for a migraine is go to bed.  When I’m not at work, I do that a lot.   
My poor child has to ask me all the time whether or not I’m feeling good, or if my head hurts.  He shouldn’t have to cater to my suffering at such a young age.  It makes me mad.  I still feel as if I’ve been mistreated.  I went to the doctor for tremors that we are treating, but of which the root cause has not been found.  Then, we go ‘gung-ho headache’ and diagnose a rare disease.  Then we blame the LP procedure for the pain for a week.  Then we blame migraines for a week.  Then we blame the increased pressure in my head the next week.  The emergency room treats me for a severe headache, but doesn’t try to figure out why I am having it, charges me 100 bucks and sends me home to be on the couch some more.  Then the doctor tells me that there isn’t anything more he can do and I just have to wait and let the medicine begin to work. This miracle medicine that made me worse instead of better.  Gah!  I just want to scream sometimes.  I am going to keep my appointment in Little Rock on the 15th, and get to the bottom of this.  I’ll just start over with the tremors and go from there.
At least there has been some improvement :) I am happy that I can still go to work as long as I can rest up between shifts :)  I am happy that I am smoke free for the first time when I felt like I had really kicked the habit. :)  I am happy that I am fortunate enough to have a good job with insurance.  I am happy-and honored-to have so many people thinking about me and praying for me.  :) I am happy to have a family that loves me and takes care of me and of Riley when I can’t.  I am happy to have a dishwasher in my kitchen!! I am truly blessed by God to have so many people who care.  Much love to you all!

My Health #5 - Thursday, July 21

This is getting to be ridiculous!  52 days of severe, intense, extreme headache pain, light sensitivity, and all the other symptoms I mentioned in previous notes has got me flustered.  When I've had enough, I start putting my foot down.  I may not be a doctor, but I know my body, and I can read about conditions that are thrown at me.  I am now in the "I'm not going to live like this anymore, you can forget it!" Stage of the game.

I have a few bits of information and a few decisions I've made that I'd like to share.

1.  I have quit smoking.  For ever. If I EVER go back to it, I will be the most ashamed of myself I have ever been about anything in my entire life.  I have to do this. There is no reason on Earth to go back now.  EVER EVER EVER.
2.  I am going to continue to lose weight slowly.  I have lost almost 30 pounds over two years, and the likelihood of gaining it back when you lose it that slowly is much lower.  Also need to kill my high cholesterol.
3.  Topamax=Dope-a-MAX in my system, and is not for me.  I cannot handle the side affects, though I had high hopes for it. AND, since I don't plan to take this medicine which renders birth control useless and causes birth defects, I am NOT going to get my tubes tied....yet.  I'll wait to see the new doctor, so there still may be hope.
4.  The neuro I was seeing is no longer going to be seeing me.  MY choice.
5.  My eye exam went just fine, and my eyes are not suffering any affects of the pressure in my skull or from any pressure of their own.  My prescription hasn't even changed in three years enough to get new lenses.  So the pain in my eyes is coming from whatever is causing the pain in my head, and not the other way around.
6.  I have an appointment in Little Rock on August 15th with a Neurologist, which is another 23 days away.

When I get finished with me, I am going to be a better me than before,  Doggone it!  Meanwhile I still need My God and my friends to get me through these days when the pain makes me forget all the stuff I just said up there.

My Health #4 - Wednesday, July 13

I saw my regular doctor.  He gave me Phenergan for nausea and Hydrocodone for pain as needed, thank goodness! (I can take twice per day, but try only to take once in the evening, if at all.) The neuro told me I shouldn’t take the hydrocodone because it would cause rebound headaches.  I am thinking to myself:  How can I get a rebound headache if I never stop having a headache?!  I digress. He also prescribed the Chantix to help me quit smoking, which you all know is working great. (day 9 today!)  Doc Delayed discussion of getting my tubes tied ‘til I was feeling better, which hasn’t happened yet.  I have since made an appointment with my ob/gyn for that.
I have used the Imitrex the neuro gave me for migraine headache some, and have found that when I wake after taking a dose, half or full, I am extremely stiff all over.  It is very painful to ‘unfold’ after taking this medicine, though it does relieve the more severe headaches.  I try to take this rarely.
I have lost more than 20 pounds since my LP on May 31st.  My appetite is less than half what it was before I started taking the Topamax. I’m now up to 100 mg/day.  I am experiencing frequent nausea since starting the Topamax, though I have only ‘gotten sick’ once, the day I went to the E.R.  I am extremely weak and dizzy-headed since starting the Topamax, especially if I stand up too fast.  I understand that it will take some time to get used to this medication and that it will take time to get to the right dosage, but I am barely well enough to work, and can do nothing at home but rest on the couch.
My convulsion spells are almost completely gone.  The meds for that are working.  It also helps me sleep through the night despite the headaches. 
My jaws are very sore all the time, like I have been clenching something in them constantly.  I suspect possibly just an extension of the pain and pressure in my skull…?  My neck and shoulders are in knots.  I have to try to keep my body relaxed and in alignment and not turn my head or shift my eyes too far to either side or it causes a ‘wave’ of pain that takes some time to recover from.
In the past I have had experience with “Brain Zaps” when stopping or changing depression medication.  However, no change has been made to dosage and I have recently started having these “Zaps” When I rise from a sitting or lying position, and especially when I awake.  After a bit it passes, and I have had them before and am able to cope, but I would certainly prefer not having them.  Before my LP, my headaches were daily but not constant; painful but not severe.  Now they last nearly 24 hours. I go to bed with one and wake with one and keep it all day.  The headaches are far more severe than they were before the LP, and before starting the Topamax. 
My eyes are now extremely sensitive to light.  I have had to ask my supervisor to change the lighting in my office to accommodate.  Some days I have to wear sunglasses all day and all night. Sometimes I have to go into our storeroom at work with the lights out where it is pitch black to get relief.  My vision is blurry with or without my glasses, and seems to be worsening.  I have made an appointment with my eye doctor to check on my vision issues.
I’ve been doing some reading and have actually been tossing around an idea that I might still have a spinal headache from the spinal tap I had on May 31st.  The symptoms of a spinal tap are:  the worst headache you’ve ever had; extreme sensitivity to light and sound; nausea; visual changes; worse when sitting or standing, better when lying down; neck stiffness; dizziness.  The only hang-up is the duration.  The standard medical sites all say that the spinal headaches last only about 7 days max.  First my neuro said I was having a spinal headache, and then he said it was migraine. Then when I mentioned that it could be from the spinal, he said no way. he said it had to be from the increased pressure in my skull.  I am going to a new neurologist a.s.a.p.  Sending all my records to one in Little Rock that came highly recommended.  We’ll see how that turns out.
I sometimes feel as if I am imagining myself into worse shape, but I can’t fake how bad I feel.  The worst part about all of this is that I didn’t go to the neurologist for headaches. I went to him for muscle convulsions in my left jaw, left leg and abdomen.  That problem was easily solved.  The headaches were a secondary issue.

My Health #3 - Tuesday, July 5th

Smoking Status:

Official Chantix Day 8. Official Chantix Quit Day 1: SUCCESS!  No SMOKING TODAY.  Most of the day I didn't even think about it.  Right now I am struggling through some cravings, since this is the time of day I smoked the most.  I'm supposed to take it 5 minutes at a time.  I WILL go to bed smoke free today.  Just in case anyone is wondering, it takes about 5 minutes to talk myself out of smoking. I hope you don't mind lending me your ears for a week or two while I try to get free from the addiction.

Health Status:

I have been in the darkest sunglasses I could find since I opened my eyes this morning, even now, at   I feel like a vampire.  My eyes are weak.  My head feels like a coconut hull filled with a balloon filled with rocks filled with more water than there's room for.  My eyes are squashed.  There's plenty of fog in there too, though I'm not sure how there's room for it.  I feel so dumb on this Topamax. I can't think straight to save my life.  Not that I have yet done so, but It's like I could totally put the ice cream in the car and my keys in the freezer and never give it another thought.

I have an appointment with my Neurologist tomorrow afternoon as a follow up.  I guess we'll see what he says then.  I think I'm gonna go look for a second opinion from someplace too.  I have been looking in Fayetteville and Little Rock. Does anyone have any recommendations of a good Neurologist?  I have a preference of someone that is easy to understand and whose name is easy to pronounce :) But other than that, I just want someone who is really good and is comfortable with rare disorders like Intracranial Hypertention.

My Health #1 - Tuesday, June 7

As a young adult, while working at Sears part-time, I had to quit because I couldn’t stand on concrete for as little as 4 hours without going home in tears. My husband was an over-the-road truck driver, so he made enough money to support us. I took about a year off from working, during which time I taught piano lessons to just a few students, and rode along with my husband on occasion.   In July of 2004, I went back to work at a desk job for Home and Lawn Repair, Inc. and although that was very hard work in a repair shop, I was still able to work full time.  In December of 2004, my husband and I learned that we were expecting our first child!  I can’t begin to describe the feelings that washed over me; excitement, fear, joy, horror, inadequacy, love, terror, elation.  It is, I found out, possible to experience all of those emotions in unison.
About five years ago, after our son was born prematurely and with many complications, I was diagnosed with Fibromyalgia, but I'm almost certain I have had it since I was a very young teenager.  The trauma surrounding his birth was just the straw that broke the camel’s back.  
For those that may not know, Fibromyalgia is widespread unexplained pain throughout the body with no known cause.  It seems to originate in the central nervous system.  It typically has symptoms like depression, headaches, often severe (migraine), difficulty concentrating (often called fibro fog), stiffness, trouble sleeping, irritable bowel syndrome, and generalized pain and severe fatigue.
I theorize that I was prone to this condition at a young age for two reasons.  One, it has been found to run in families, and my aunt was diagnosed many years ago with the same symptoms.  Two, there really isn't any reason for a healthy kid not to be able to run a mile without feeling like they are dying.  I was not heavy then and was a very active child.  Also, in high school band, there were some exercises that I simply could not do.  There was one in particular that I remember:  I had to lie flat on my back and raise my feet 6 inches off the ground and hold it until the director said to lower them.  I simply could not do it.  I also couldn't run to the end of the parking lot and hug the big oak tree and then run back, or run laps.  I just couldn’t overexert myself. 
By the time I finally went to the rheumatologist and was diagnosed, I was taking what I would consider to be a crazy amount of medicine for a woman in her twenties.  I was prescribed something for depression, contraception, pain, sleeplessness, IBS, focus, fatigue, high blood pressure, cholesterol and on and on.  I decided about 6 months ago to stop taking everything except the blood pressure, depression and contraceptive medication.  I felt better and better.  Eventually I was even able to cease taking the blood pressure medication because my b.p. was normalizing for the first time since I’d had my son.  I wasn’t falling asleep at work anymore.  But, the one thing that never went away was the headaches.  These headaches mostly felt like sinus headaches, with a feeling of pressure behind my eyes.  They made my eyes heavy and sometimes the only way to get relief is to lie down, or to take a hot shower.  I was dealing with them, and just considered them to be a part of my daily routine, and part of the Fibromyalgia.
Then over a year ago, I started having problems with left side of my jaw clattering when I was trying to go to sleep.  I tried explaining it to my doctors, but the message seemed to get lost in translation.  It was not noticeable to anyone but me until more recently, when my husband started noticing that my jaw was tightly clenched when I finally went to sleep, and I was making a hissing sound when I breathed.  Then the clattering spread into my left leg, which would kick out straight and hold tight for a few seconds before coming to rest.  This went on for some time and then it, too became very noticeable.  My husband described it as something akin to sleeping with a hissing donkey.
When this convulsing spread into my abdomen, I decided it was time to go see the doctor.  Trying to sleep next to a hissing donkey that behaves like a folding chair on the blink would make any spouse uncomfortable.  Fortunately enough, I haven’t had any black outs with these ‘spells.’  The clonazepam does help the spells.  My husband says that they are not noticeable anymore.  I still have them, but they aren't as severe or scary.
I went to see my family physician about this issue, and the first thing that he was concerned with since the spread of the convulsions was that I may be having a type of seizure called simple partial.  This concern was also expressed by the neurologist.  He ordered an EEG and an MRI, both of which came back normal, and he noted that the shape of a part of my brain told him that I was very smart.  It is nice to be given that diagnosis at least.
The neurologist decided to up my dosage of clonazepam to see if it would help the ‘spells.’ The neurologist started asking about my trouble with headaches.  I described them as a dull ache that has prolonged over a period of nearly 14 years.  I don’t have a headache ALL day, but I do have one for at least a period of time EVERY day.  Usually with exertion, stress, or tiredness.   At this point he was really interested in the headaches and my description of the type of pain I was having.  He said that he suspected I have a condition called Pseudo tumor Cerebri, or ‘false brain tumor’.  PTC is a condition where the body either produces too much cerebral spinal fluid (CSF), or doesn’t reabsorb it correctly. There is no known cause.  There are four main risk factors, or the four “F's”:  Female, Fertile, under Forty and Fat.  He said that the only sure way to diagnose this condition was with a lumbar puncture, or spinal tap.  We scheduled the test for May 31st, 2011.  My friend drove me to the Dr.’s office. 
I lay down on his exam table. He raised my shirt and lowered my sweats just enough to expose the area he needed to access.  He cleaned the area with a cold scratchy brush pre-loaded with castile soap.  He then coated the area with Betadine® microbicide.  He then draped sterile towels around the area to keep it clean and clear of debris.  He gave me two shots of a numbing agent just under the skin where he would be working.
At this point it was time to insert the .22 (extremely thin)gauge needle with a stylet in my spine between the L4 and L5 bones of my spine, trying to hit a 2mm area wherefrom he would extract and test my spinal fluid.  He was unsuccessful on two tries.  I must say at this point that the word insertion makes it sound like the needle slips into place easily.  This is not so.  The best way I can describe it is to ask you to imagine the way a knife feels in your hand to slide the point of a blade into a raw roast all the way to the hilt, but in your back and add terrible pain.  This happened three times before the doctor was able to hit the right place.  The doctor said later that it was a very difficult tap. In retrospect, I’m glad he didn’t give up.  I don’t think I would have wanted to try that again after an unsuccessful attempt.  As soon as the needle is in place, the stylet is removed and spinal fluid (hopefully clear) will drip out.  Then a device called a manometer is attached to the spinal needle to measure the pressure of the fluid coming out of the spine.  It measures pressure in cm.  The normal opening pressure for an adult patient is between 8 and 20 cm.  My measurement was at 25 cm.  This confirmed the diagnosis of Pseudo tumor Cerebri.  After the procedure was finished and the doctor removed the needle (which burned terribly), he sat me down and let me know what I need to do to cope with this condition.  I am going on a medication called Topamax to help regulate the pressure in my spinal column and brain.  This medication ‘messes’ with birth control pills, and can also cause birth defects if I were to get pregnant while taking them.  The doctor suggested that I have my tubes tied to prevent any chance of pregnancy.  He also wants me to quit smoking and lose between 50 and 100 pounds.  It would seem my life is about to take a very serious turn.
After the procedure, I got a ‘spinal headache’.  This is a headache that commonly occurs after a spinal tap, when the pressure in your spine goes too low.  It is like no other headache.  The only way to get any relief at all is to lie flat.  So, expecting to do so for 24 to 48 hours, I made a nest on the couch decked out with laptop, coffee table, water, pain pills, and some pillows and a blankie.  Tuesday went by.  Wednesday.  Thursday things were still getting worse rather than better.  I went back to the doctor Thursday and he took me off the Topamax, citing it as the exacerbation of my spinal headache, but also noting that I was also suffering a severe migraine headache. He prescribed me Imitrex for my migraine and sent me home and took me off work on Friday. 
Thursday went by. Then Friday. No improvement. At 4 a.m. Friday I was awakened by sudden and severe nausea.  I ran to the bathroom and was sick.  We decided I should go to the e.r. and see what was up.  I didn’t take any medicine.  I checked in to the Mountain Home e.r. and they put in an i.v.  and gave me a dose of Demerol, Benadryl, Tordol, a muscle relaxer, and an anti-nausea medication.  I slept well for a couple of hours, while they dropped a bag of saline into my system.  They sent me home with a prescription for Percocet and Soma for pain and muscle relaxation.  Sunday passed. Then Monday I went to my regular doctor to fill him in on what has been going on.  He discovered that along with everything else, I have a sinus infection for which he prescribed me some antibiotics.  He also prescribed me some Phenergan.  I went to the Neurologist this morning, feeling a little better.  He told me to resume the Topamax when I felt that the spinal headache was gone completely.  I think it is.  There is so much to do now.  And the only two things I know for sure are that I have a future that holds pain and headaches and no chance of a little brother or sister for my son. 
On the other hand, I am so very lucky to have my child, and this most recent ordeal only makes that all the more true. I am also very lucky to have the friends and family that I do.  Everyone has shown such concern and offered so many prayers and help to keep our family going with Mom stuck on the couch.
I love you all!

My Health # 2 - Saturday, June 25th

It has been almost a month since I had my spinal tap, and thankfully the low pressure headaches are gone.  I have increased my dosage of topamax as directed from 1 to 2 pills a day.  They give me terrible heartburn, but I can usually keep that at bay with acid reducers like tagamet or even just tums.  I have a perscription for vicodin for the daily headache pain, which is oddly worse than it was before I went in to see the neurologist for the tremor problem to begin with.  As an aside, the klonopin that he prescribed for that has almost completely gotten rid of the tremors, and helps me to sleep much more soundly.  I  don't like the imitrex that he gave me for migraines.  It isn't that they don't work.  They do. But they make me feel really really strange when I wake up after taking one, and I feel like I have slept folded up in side a box and I have to unfold myself, one body part at a time to be able to get out of bed and get moving again.  Sometimes one or both of my hands will be curled in and completely stuck.  When I am finally able to get them to loosen up, the pins and needles are intense and last about 20 minutes.  So, I try not to use the imitrex except when the headache is a full on migraine as a last resort.

Lots of these medications are schedule 2 and 3 narcotics.  That worries the fire out of me.  I am scared to death of getting addicted to them, so I won't let myself take even the prescribed dosage.  I only take the vicodin when I know I am going to be home and on the couch for the night.  I bought some equate migraine...acetominophen, aspirin, and caffeine (just like excedrin migraine) to take at work so I don't have to be on the vicodin while I'm there.  I want to try to do that as long as I can.

The topamax most definitely has a side effect of weight loss.  I have lost 14 pounds since May 31st.  My food intake is probably close to half what it was before that, and I have yet to reach the full dosage, as you have to work your way up to it.  That is one side affect that I hope to use to my advantage, because one of the things that I HAVE to do is lose 50 to 100 pounds to help with the Pseudotumor Cerebri.

The other major life changes I have to make are to quit smoking and to get my tubes tied.  Yesterday I called my Doctor and asked him to call me in a prescription for Chantix, which is supposed to help me quit smoking.  There are some of you that may not know that I am a smoker, but I have been with the exception of my pregnancy and the first two years of Riley's life since I was 17 years old.  It is not a fact of which I am proud, but it is a fact nonetheless.  I truly want to quit, and now that I have to, I am going to dig in and get it done.

As far as getting my tubes tied: to say that I have mixed emotions is the understatement of the century.  I have always wanted to have two children.  Always. ever since I was old enough to play with dolls and know what a momma was.  That dream is about to be gone from me, and I can think of it objectively on some occasions, and on others, I just break down and cry.  I remind myself how lucky I am to have Riley, especially since we nearly lost him and me both during his birth.  But it still hurts me to read about the procedure options out there for me to permanently and purposefully prevent my body from being able to perpetuate the life of another child for me to love and to raise.  I also then remind myself of all the great friends of mine who have children who I can 'steal' and treat like kings and queens and share with my Riley to make up for it.  This part of this disease is actually harder for me than dealing with the pain I feel every minute of every day.

I don't mean to sound like a whiner, although I have been one all of my life, and I know it, and my friends know it and yet somehow still love me, but I don't know how I'm ever going to be able to maintain my home fighting with the pain of these headaches and the utter exhaustion of my fibromyalgia.  I do so look forward to the time when Riley is big enough to wash the dishes and put away his own laundry and vacuum.  That will help.  In the meantime, I feel as if I am living in squalor.

The bathroom floor is full of dirty clothes.  The bedroom is full of baskets of clean clothes that need to be folded and put away.  Dishes are piled high in the sink and the vacuum needs to be run.  All I have the energy to do is work full time, come home and get on the couch and rest, MAYBE fix dinner for my family, and go to bed.  On the weekends I stay on the couch recuperating so that I can repeat the process again the next week.  Our household has one income, and I can't afford to lose my job, so I spend every moment I am not at work conserving or regenerating energy so that I can go back and face another day.

The doctor tells me that this condition is going to get worse and peak in my mid-forties.  I am still not certain what that means.  The Mayo Clinic website tells me that if the pressure continues to stay high or to rise, it could begin pressing on my optic nerve and take my sight.  The incidence of the illness is about 1 in 100,000 americans.  In the high risk category, of which I am a part: obese women of childbearing age, the instance is still only 19 in 100,000. I am scared and in pain and tired.  I am unsure of the future.  I am living one day at a time.  I am asking all of you, my dear friends, to continue to pray for me.  I need you all.  And please forgive me if I bring you down.  I am not trying to do that.  I am just trying to share my heart and search for healing.  I love you all.

So, Today I Got...

A sunburn? No.  A new shirt? No.  A big fat slap?  No, but it sort of feels like it now.  Today, after years of hemming and hawing, and being a fraidy-chicken, and wishing and wanting and planning and drawing and dreaming, I got my Tattoo.  It feels nice to know that I am at least strong enough to take the pain, which truthfully wasn't anywhere near as bad as I thought it would be.  It is a small tattoo, around 2 inches tall by three inches wide.  On the front of my left shoulder.  I can cover it if needed, or show it off, My choice.  I did it.  I finally did it.  [Insert sigh of relief here]

My dad asked me what possessed me. Then he asked me if my rose looked like a cabbage instead of a rose.  Then he saw it and did his little "I don't really like it because it's a tattoo, but I guess it isn't too horrific looking" face.  My mother said she thought I had more sense, but then said that it was very pretty.  My best friend Lindsay said she can't wait to see it, and my husband hasn't said much.  I can tell though that he is not best pleased.  He is worried about money, which I can understand, but the shop was extremely reasonable.  He also mentioned that my boss would have a cow which doesn't matter since I wear shirts to work that cover the tattoo.

People get ink for many different reasons.  Some to show off in a big way, some for very personal reasons that are no one elses business, some because they are drunk and stupid.  Some are self-applied.  Some are  Some are in memory of something, and some are food for an addiction.  Either to pain or to art.  I don't think it is bad to be addicted to art.  Both art and pain have been called beauty.  I think that my reasons are very personal, but I don't mind sharing.  In fact, I hope that someone might even be touched by my sentiments, as they are very deep indeed.

I wanted this very specific and very special tattoo to keep some things close to my heart.  My maiden name, as well as my favorite flower is Rose, my favorite color is purple, I am a long-time musician and singer, and I am a mother of a sweet boy who means everything to me.  My tattoo incorporates all those things together to describe me.  Even the placement of the tattoo is significant.

So, whatever your judgment, it will have to stay yours, because I made mine.  I love how it turned out, and I will cherish its meaning all my life.