Alot has happened-

I had my wisdom teeth removed just before the holidays, believing it was the cause of my discomfort in my left ear.  Well, now that everything has healed, and I have been on anti-biotics for almost 2 weeks, I think we can can safely rule out any infection. (I have also confirmed this with my GP).  It is a mystery to me, because the pain is crippling.  But it also seems to coincide with my flare ups.
I do have an appointment in Boston this week!  What I thought might take 5 to 6 months will be happening before the end of the week.  I may finally know why I have pain, muscle spasms, parasthesia, mood swings, memory loss, and all the other nasty stuff that has happened to me over the pass few years within a matter of days.  It seems to good to be true...
I had to pick up a copy of all of my tests done over the course of the year.  I snuck a peek at my MRIs and X-Rays... I'm no doctor, but I thought I only had one white spot on my brain (I have Mesial Temporal Sclerosis)?  There looked to be at least eight...  I'm not going to freak out, but this makes me wonder if perhaps I have been diagnosed wrong?  My new doctor did say he thinks my pain is related to my central nervous system.  He wouldn't diagnose me because he is not a neurologist.  I just trust him more.
And it makes me all the more anxious to see this specialist in Boston.  He does specialize in both pain and neurology.  I'm excited and nervous all at once... and yet I don't want to get my hopes up too high- because I've been down that road before way too many times.

-Recovering-

This past Friday, I began to suffer from the worse case of vertigo I have ever experienced.  It felt as if I were walking on a boat, I was nauseous, and I couldn't focus on anything.  I went to the ER that night, where they gave me some anti-nausea medication, yet I still felt car sick for the next 3 days. 
Yesterday, I also had a terrible earache.  I went to my GP to rule out an ear infection.  He said I was showing no signs, other than a slightly red throat. I made a follow up for this coming Friday, in case things haven't improved, and went home. 
The pain has gotten worse, radiating from my jaw and ear.  It is a stabbing,throbbing pain, that gets worse when I move my jaw.  The only thing I could think that might make my face hurt like this, and also cause the vertigo I had been experiencing is either TMJ, or an impacted wisdom tooth.

I already know that my wisdom teeth on the bottom are impacted.  I never had them removed, because they weren't bothering me.  So I have made a dentist appointment in the up incoming days to see if that could be the culprit.  I think my only saving grace has been the pain medicine for my RSD.  I remember when my siblings wisdom teeth began to be a bother to them, and both of them had impacted teeth...  they were in agony.

For now, I'm just glad the vertigo has gone.  I could not get out of bed, or open my eyes it was so bad.  At least with the pain, I can some what function.  It's all a mater of thinking of shades of gray.

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-Just When I think I can Relax-

So I remember the term the doctor use to describe the 'uncomfortable yucky feeling' I have on my side.  Paresthesia.  It burns, it's painful, and sometimes it is just plain old yucky.  People who have had experienced any type of anxiety have had felt some form of it... the feeling of the hair standing on end.

I have it constantly, ten times more severe... and much more painful.  I no longer wear denim, it hurts my skin. 

So I look up conditions that could cause paresthesia, and there are many- RSD, fibromyalgia, lupus, vitamin B deficiencies, anxiety, I could go on...  but I narrowed my search to 'one sided paresthesia', and I came up with this article:

A 48-year-old right-handed female patient with a right aortic arch and history of tetralogy of Fallot repair as a child presented with recent episodes of severe headaches that resolved and episodes of left-sided numbness. On examination, the patient had no neurologic deficit. MR imaging of the brain was performed, which demonstrated tortuous dilated vessels in the right perimesencephalic region and mass effect on the brain stem. Cerebral angiography demonstrated a right proximal PCA dolichoectasia of the P2 segment supplied by a patent P1 segment and posterior communicating artery (Fig 1). Other areas of milder dolichoectasia were present with mild enlargement and tortuosity involving the right intracranial internal carotid artery, basilar artery, and distal right anterior inferior cerebellar artery.

READ MORE HERE 

The one test I haven't had done (recently) is an MRI of my brain.  And this article is, in short, is saying that the patient had a problem with the vascular system in her brain.  The majority of what I have read about one sided paresthesia involves the vascular system in the brain.  That scares me a lot.  My little sister (she was 25 at the time) had a stroke.  The entire left side of her brain basically died.  

 

The other condition I have read about are transient ischemic attacks (TIA) or 'mini strokes'.  These are one third of the time warning strokes to a larger stroke.

Now, I could be blowing everything out of the water, and worrying over nothing...  But I called Boston, none the less, and made sure I let them know I was very concerned, and wanted to know if they had gotten my records yet.  The receptionst found them, and when I told her I was experiancing left sided paresthesia, told me she would mark it as 'Urgent', so I would be seen as soon as possible. 

I'm not sure if I feel any better...  But hopefully I will know what is going on soon.  Until then, I need to just find something to do to keep me relaxed, and pain free.  The more good days, the better.

Second Opinion

I finally had my exam with the second pain specialist.  This has been the most thorough exam since I've started this process.  The doctor ran his finger across my skin, and had the nurse mark where the uncomfortable and painful sensations started and stopped.  From head to toe, no area went unexamined.  There where parts of my body that were being effected that I wasn't even aware of.  My entire left side of the body has some form of pain and or discomfort.  Sometimes it burns so bad I can no longer wear jeans.  My intestines and muscles are also being effected.

This bring us to the next step in my journey.  I was born with a scar on the right side of my brain, on the temporal lobe- mesial temporal sclerosis.  It has been the cause of my epilepsy.    I also have a birth mark, or what is known as an hemangioma on my left side.  This has my doctor thinking- perhaps what is causing my pain is somehow connected to the scar in my brain.  So I need to make an appointment with a specialist in Boston.  One that treats both pain conditions and seizures.  This could take over 6 months to get an appointment.

Until then, my doctor has a plan.  He has spent his career treating cancer patients- and he is tired of poisoning people.  His goal is to treat my pain as effectively as possible with the least amount of medication.  He prescribed a medication he believes has less side affects, and we will be working with my psychiatrists and neurologists to lower the amount of medication I am taking.

I feel a great deal of relief...  I already had a good nights sleep, something that was seriously lacking for me for months, and a pain free day.   At the same time I have felt overwhelmed, inadequate, and lonely.  The pain came back today with advengence, and I just fell apart.  Pain is an emotional roller coaster, and it's taking me for one hell of a ride.

-Wearing Down-

When you live with pain, you learn to run on pure adrenaline to get you through the day... or at least that is how my body is coping.  I don't do a whole lot, most days.  I wake up, have breakfast with my family, take a nap, then get the few things I need to to get done for the day, whether it is running a couple errands, or just checking some messages on the computer. I also have my son to take care of, and as any parent knows, every toddler has there moment.  But I get through the day, and I'm sore, but still unable to sleep.
Today, I experienced something I very rarely feel these days.  Pure out of breath, barely able to move exhaustion.  Even after napping.  What changed?  I had company, and we ran an errand, and I also pushed myself a little but harder to keep up to her pace- taking her dogs out to play with them, chasing my son around. I sat down half as much I am used too. 
Then it hit me like a ton of bricks.  The adrenaline was gone, and  I was scared and sore... this wasn't a panic attack (I have had those).  This felt like I had run 20 miles while carrying 100lbs on my back.  The moment I sat down, I was done for. 
It has taken my 4 hours and some to start to feel some what normal.  I'm still exhausted.  I'm not tired, just fatigued.  It's days like this I wish I could show the doctor what was going on....  It's days like today that I can't stand the uncertainty. Is this the RSD... no.  Is it a result of chronic pain... I highly doubt it.  But for now, that is all I have.

-Guilty as Charged-

Today, I felt myself physically giving up.  No matter how hard I try to mentally push through the pain, sometimes my body just gives way to the physical signs of depression.
Since being diagnosed,I have had a terrible time with doctors, either over medicating, not listening, or not being available.  I had to switch doctors, and start the process all over again- and it took me over 7 years to get the first diagnoses because I was just living with the pain, and the doctors kept telling me it was all in my head.
Now I have a son, and I have a terrible time particapting in his life... The waiting and the pain are just exhausting.  I try so hard to keep my spirits up, but it's just getting harder every day.  There are no local support groups here, and I only have my mom and fiance as local support.
I've started just napping toget through the day...  which just makes me feel worse.

I have been depressed before and know the preventative measures to take:

• Make sure to eat at least three meals a day
• Try and get a good nights rest
• Limit naps
• Excersise
• Keep Social Company
• Use positive thinking

These are just the basic.  I've been going through the motions.  But it is just that- they're just motions.  I eat, whether I'm hungry or not.  I try and sleep, and stay on some kind of schedule.  I try and go without naps, if I think I can function (it's getting harder everyday).  Excersising- I have my limits, but I try to work around them.  Social company- I get out of the house when I can.  Positive thinking....   I have hope...  that is one I always will need to work on.

I just wish I knew why I felt like giving up more and more.  When I say give up, what I mean by that is, well many things.  I wish my family didn't have to take responsibility for me.  I want to just go somewhere where they could figure stuff out.  I hate the way I see my family worry about me.  I hate watching my son grow up and not being able to do more for him.  I know I do the best I can, but I want to do more. 

I guess this would be classified as the 'guilt' aspect...