Health Update for May

Well after the Occipital Nerve blocks my Neurologist also gave me a TMJ nerve block on both right and left sides and a temporal nerve block on my left.  I felt human again, the buzzing in my ears lessened and no headaches for 2 months.  I felt so much better other than the fatigue I felt cured.  I had my sleep study and the results showed severe Excessive Daytime Sleepiness.  During the Latency test the longest time it took me to fall asleep was 4:27 minutes.  My Sleep dr. wanted me on treatment ASAP, the results were 1 of 2 things, Narcolepsy or Idiopathic Hypersomnia.  After seeing my PCP and 2 Neurologists that all refused to treat me, I am again falling through the cracks, and getting nowhere, just when I thought I was.  I am just so tired!  Most days I sleep between 10-12 hours, other days I sleep 7-8, but if I am even slightly sick we are talking about 16 + hours easy.  Today is a 16 + hours, my allergies are wreaking havoc, luckily I don't have weakness, but the fatigue and brain fog is crippling.  I am taking a break from doctors for a while, I just need reevaluate this whole thing and slow down.  My family life, marriage, and sanity have been stretched to their limits.  I thought I was holding up better than can be expected, I wasn't going to let this thing get to me, but I have just been so broken down by this process, that I want to give up.  I know I can't, and I have been down here and there along the way, but this time its worse.  I refuse to see another doctor to have him tell me I am depressed, no shit!  You wonder why?  The good news I have a Sleep Disorder (no one will touch), so screw it no prescription, coffee intravenous it is.  No driving long distances by myself and taking naps that is what I have been doing.  Lack of independence, relying on others this is what my life has succumbed to, Buck Up Girl, get over it!  It sucks, no support, but answers, I just don't get it.  Really I don't.

Health Update from January

I started getting Occipital Nerve blocks last month, and after the second one I started noticing I was off.  Vision was blurring, felt feverish, memory worse than usual, bladder forsaking me, severe weakness upon waking, incredible neck pain goin into base of head.  No headaches.  YAY!!!   No headaches. 

I had a weird symptom where, while I was sleeping I felt a vibration travel up my spine to the base of my head.  It resonated there and felt like it gained pressure, then it blew through the top of my head.  My face went totally numb and prickly, my lips felt like they were asleep (all this happened as I felt like I had a high fever and it broke).  I rolled over, noticing I was covered in sweat, my clothes were damp.  This happened again on the other side.  I rolled over again and it happened one more time.  This was kind of alarming, I didn’t know if it was a seizure or what.  I couldn’t sleep the rest of the night. 

I left a message for my Neurologist in case this was something alarming that I should worry about, and they told me to see my PCP if I was feverish, it could be from my injections.  I called them and set up and appointment for the next day.  I wasn’t concerned with the fever it wasn’t getting higher than 99.5 and I told the doctor that when I saw them.  Everything checked out fine, and that was that.

Overall, I am excited about the nerve blocks working, other than pain relief from my most common headache problems (muscles in my neck, pulling on the back of my head), I can lay on a pillow, wear a hat, wear my hair back without worrying about it causing a headache!  This is 1 more step forward that I am extatic over.

I don’t know why I had all of the symptoms I was getting, but I will bring them on when I see the Neurologist this month. 

Reading Challenges

I Challenged myself to read at least 36 books in the New Release Book Challenge which continues for the rest of the year.  I also Challenged myself to read 12 books for the month of January.  I have 1 1/2 to finish today. 

These Challenges may seem silly to most people.  I have to have a goal to look forward to, and this just happens to be mine.  I do no immerse myself in television, movies or the like.  I either listen or read books to take my mind off of things.  Why not make it more fun by challenging myself as well.

Will update this post with the outcome.

***Update****

I reach too high and finish just under!  That is fine.  I finished 11 books for the month of January.  I will not complain, I still think that 11 is outstanding.  

I usually choose to spend all of Sunday reading and relaxing, but a good portion of today I spent with the kids and that comes first if possible.  Everyone is usually doing their own thing and that is fine too, but today we came together, I read with my son, had a few heart to hearts with my daughters, and worked on an extensive homework project with my oldest daughter that got everyone involved.  It was a good day, so not getting to read that one book, Ha oh well!  

Keep striving for those goals that make you happy, but if life gets in the way cherish that too.  Don't lose yourself in just getting those goals met, know that they are the extras that encourage your to gro and as long as you are growing you have already won.  Take care everyone and I hope you are all well.   Goodnight.

Modifications…

As I am sitting here typing on my LED backlit keyboard, double checking my posture is as efficient as I can make it, I have improved since April of last year.  I now understand that I have modify my lifestyle. 

In May of 21014, my Neurologist told me that I am Hypermobile.

• Joints that are more flexible than normal or that move in excess of a normal range of motion are considered hypermobile. When generalized, hypermobility occurs with symptoms such as muscle or joint pain without systemic disease, it is called – hyper mobility syndrome or joint hypermobility syndrome.
• This caused me to find others that have this.  I found a few websites that have really allowed me to explore how I can modify my lifestyle so I reduce injuring myself. 
• Now just so you know I have never dislocated a joint, I have hurt my shoulder grabbing a Sippy cup for my child in the backseat, I have pulled all the ligaments in my pelvic region while pregnant from hitting a bump in the road, wrenched my wrist from opening a jar, holding pens or pencils is a challenge to me, and so on.  Maybe these sound minor to most, but they themselves prove that I push beyond what is normal range of motion, sometimes without thinking it can injure me.
• These injury’s cause “Trigger Points” in a condition called Myofacial Pain Syndrome.  I have been having Trigger Point Injections to relieve some of the painful areas.  I cried the first series of shots, it release so much pain that I  became very emotional.  I know Boo Hoo right?  I hated myself for crying it was so unexpected.  These really do help me a lot. 
• I have taken the whole idea a lot more seriously, after realizing there were ways to modify your lifestyle.  Checking to make sure your aren’t over stressing your joint, sitting with better posture, sleeping with better posture, getting up and moving…

My Neurologist gave me a strong course of B-12 injections in September.  I am feeling like I have a lot more energy, feeling a bit stronger and above all I can feel sensations in my hands and fingertips again.  The pieces are fitting together.  Now my Neurologist said he wants to keep my B-12 levels above the normal range due to the fact I have neuropathy.  To a normal doctor, they wouldn’t push to raise my levels.  But again this Neurologist know his stuff.

In late August my PCP started me on Lyrica- wow what a crazy med, I went on and off, and on and off it again, then because the side effects from withdrawal were so bad I went back on it again.  I have worked with my doctor to find a comfortable range of dosage that I am happy with.  75 *2  a day, so so.  150 *2 daily, crazy!!!! I am on 75mg in the morning, and 150mg at night.  This dosage really helps me be alert during the day, and sleep great at night.  I am feeling better, this did take about 5 months to reach this state so just be warned, it isn’t an overnight thing, it was trial and error. 

October, every October for the last 4 years…  I had high fevers, no flu, no known cause, I was so weak for the entire month that I couldn’t stand for more than 10 minutes at a time.  I slept 20 hours a day.  The exhaustion was killing me.  Thank God in July I had everything organized for the PTSA, so I could just read a To-Do List and go from there.  I don’t think I would have made it, truly.  I took a course of antibiotics, then a course of prednisone, then I finally came out of it. 

November I was off and running again. 

This month my doctor started me on Nerve Blocks for the Occipital Nerve to see if that would help with my headaches (tension from neck pain causing my scalp to be so sore).  OMG.  I see him this week and I really am able to withstand a 6 hour days worth of work, grocery shopping, meal prep. and then not wanting to scream at everyone at the end of the day!  It is insanely amazing to me.  What a relief it has been. 

I am just so happy I feel like me again.  I can walk straight with my head held up high (my neck pain and back of head pain has prevented me from doing this in the past).  I may not be losing weight at this point, but my confidence is coming back regardless, and pain isn’t preventing me from life.  That can only be a positive for the future. 

Challenges I choose to endure.

I noticed that the last time I posted on here, I was trying to figure out if I wanted to continue with PTSA this past fall or not.  Well just an update, I did continue and I became President. 

PTSA:

I set up an Asana account so all of our Executive Committee members could be in touch instantly.  In July and August I created and set up a workspace that could carry us on throughout the year.  It worked great!  We could make decissions as they came up in a formal setting that documented everyones imput.  We could stay on track easily.  In October when I became so sick, others took over and had everything they needed to keep us on target.  It is working well still.  What a relief.

Book Club:

My boss last year, decided she wasn’t going to carry on with the Libarary’s Book Club.  So I chose to create one.  It hasn’t been huge, but I know eventually it will catch on.  It is a wonderful thing for me to hang out with a few girl friends and discuss great books once a month.  You definetly cannot beat it.

Reading Challenges: 

Goodreads encourages me to challenge myself to reading more.  I read/listened to 99 books last year.  I didn’t meet my goal of 100, but I am still very proud of myself.   I listen to books a lot more than I read them because my eyes have difficulty focussing sometimes.  I have joined a few groups a few years ago.  This month I started 2 challenges:

1. Time for Tea- a challenge for January (goal 13)
2. New Releases Challenge 2016- Annual Challege to read New Releases every month this year. (goal 36, or 3 a month)

 

Regardless of how much stress these add to my life, I feel it is still an escape from my own head.  To me it is necessary to have an outlet when my life is feeling unsettled from the symptoms that I get.  Yes it can be overwhelming at times.  Yes it can also add to the burdens I already feel.  My thought is this, I am going to live my life as full as I can and this “Conundrum” I face, will challenge me to be the best person I can be for as long as I can.  I have children who look up to me for courage, how would I want them to face challenges?  I would want them to live and enjoy life.   

PTSA or No PTSA, that is the question.

I have been involved in the PTSA for 3 years now, this year taking on a more critical role.  I am the Secretary of our schools PTSA, I took this on knowing that I could make a difference and to have my thumb on the pulse of the school.  Well it is the end of the year, and I have to decide whether to be this involved again next year. 

I love the PTSA, it has forced my husband and I to become more involved with the school, and now Teachers and Students know who we are.  I love the purpose that the PTSA gives me,  the activities and the busy-ness that it creates, and the fact it is selfless.  The work really has a way of taking me out of my own head and applying my energy towards brighter things.  With all of the stress, at the end of the day, it makes me happier.

My husband being the Vice President for the past 2 years it has really taken a toll on our family. The exhaustion that I get sometimes is so crippling that I can only walk down the stairs from getting out of bed to just sit in the recliner before I am totally wiped out.  I am not lazy, I am not bored, I am weak and exhausted.  So in saying this I don’t think that I could take on a larger roll than Secretary. 

Vice President has been brought up, and I have accepted as long as a President is found.  I will not be able to fulfill President no matter what.  It is so hard to find the balance of  “Use it or Lose it” and “Stress will cause further setbacks”.  I am more concerned with thinking clearly.  I have had a few major mishaps this year that have really shown my lack of cognitive resources.  I cannot be a leader if I doubt myself, which sucks, which really sucks!!

So in closing I am still pushing to stay involved but in a lesser role.  Which is just, ok.  I am disappointed that this is such a hard decision but, you sometimes have to make choices based on what you can live without.  The joy the PTSA gives me out weighs the agony.  And I will take joy anywhere I can get it.

Sour Dough and Gluten Free

I have been waiting for answers from the doctors to no end.  So I have taken it upon myself to do what I can do.  I researched gluten, and easier to digest alternatives and Sour Dough has come up over and over again.  So I took a closer look.

I made a starter dough and it worked, I tried 2 recipes for bread, and buttermilk sourdough waffles, that were all very good.  With Sourdough the yeast and good bacteria break down the gluten and make it easier to digest.  The fermentation process removes phytates and enzyme inhibitors.  There are a lot more great reasons to make sour dough, but the internet is filled with great information on this subject.  I wanted to get the nutrition from what I was putting into my mouth instead of it pulling nutrients away from me. 

I was so psyched to find this information out.  I jumped right on and even made a loaf of bread that took me 10 days, which in truth was really frustrating!!!!  But they all turned out perfectly.  My kids loved them, and so did I, which is awesome.  Plus there is something about making bread that make me feel like I am doing something good for my family.

Well this was lovely!  Everyone was happy, great bread, blah blah blah!  The weakness I was experiencing was continually getting worse everyday.  I thought to myself if this continues I don’t know how I am going to make it through the week luckily I had an appointment with my Neurologist coming up, and he would finally see a “bad day” for a change.

I went to my Neurologist for my 4 week check up.  He gave me the results of the skin biopsy, I have….  wow really, I have been saying the term for two months and now it goes from my mind!  Holy Crap I am going to have Google it, it really isn’t coming to me.  I have Small Fiber Neuropathy in my calf, but my thigh is normal.  He then tells me my blood work that I had done 4-6 weeks ago shows that I am Vitamin B-12 deficient and that my ANA tests are still elevated.  (In truth I had no clue to what he was talking about, I don’t remember getting blood work done recently, unless it was from the ER in January.  How confusing.)  He checked over my chart and wanted to discuss my abdominal problems, he told me that I needed to go 100% Gluten Free, to see if the the B-12 deficiency was stemming from there.  I asked him if there are any treatments for Small Fiber Neuropathy and he said the damage is permanent, there is no way to reverse it.  But if Gluten is causing my problems then removing it from my diet would stop more damage from happening.  I asked if there was enough evidence to diagnose me with an autoimmune disorder and he said that there still wasn’t.  I did get a Vitamin B12 shot and I scheduled an appointment to see him again next month.

This of course is huge for me, but in truth it was just crumbs.  I have something , but really nothing still.  My ANA results have been elevated for 6 months or more now, no shock there, but on their own, without other evidence, they mean nothing.  With this other evidence I was hoping for a clear path to take.  Yes I will go Gluten Free, and yes it would be nice to stop the damage that my body does to itself from happening, but at this point I just have little hope that it will prove anything.  I am still so frustrated with this Limbo state of mind.