The Greenhouse

I have been absent from my blog for about 4 years it seems.  So much has happened in that time.  I shall try and fill in the gaps.  However, I shall write a little bit about what I have been undergoing recently.  

About 2 years ago, my pinkie on my right hand was tingling, like the nerve was pinched.  I was not too concerned until my ring finger wanted to join in the fun and tingle too.  I saw my dr. and she thought perhaps I had a pinched nerve and prescribed a muscle relaxer.  I decided to see my chiropractor as maybe he could help as I was not too sure about the muscle relaxer med.  After seeing him a few times for adjustments and, having some acupuncture done too, my fingers still tingled and more of my arm had started up.  I saw my dr. for a follow up and something I said, made her rethink her pinched nerve idea.  She decided to test the bottom of my feet to see if I could feel anything.  She pricked me and I did not feel it.  I actually told her that maybe she did not do it correctly so she pricked the top of my foot and "OW!" I felt it.  And she said that was what she had done to the bottom of my feet.  So, she ordered a brain MRI as talking some with me, it seemed perhaps I had something else going on.  The brain MRI showed lesions on my brain.  Thus, a referral to a neurologist.  He continued ordering some more tests to be done on me to rule out, MS.  I had a Cspine MRI, Lspine MRI, Tspine MRI, a lumbar puncture test and lots of blood work.  My tests results came back with oddities that seemed to point to MS but not actually pinpoint it.  So, another referral, but this time to a specialist neurologist, one who deals with MS.  I went to the MS clinic in Charlotte and managed to get the dept. head as my dr.  She ordered some more tests and then, I had her interim replacement and then the final replacement as my MS dr.  However, all three neurologists felt that I did not have MS but perhaps, small fiber neuropathy (SFN).  So, another referral to a SFN specialist in Charlotte.  And more tests were ordered, a nerve biopsy, a nerve conduction test and more blood work.  And the results came back that I DID have small fiber neuropathy.  

So, what does having SFN mean?  SFN is small fiber nerves and these are all over the body--inside and out.  there is not a cure for this condition nor is there often a cause for the condition either. all that really can be done for SFN is to treat the symptoms.   at least for my children, this condition is not genetic.  only plus i see.  i have quite a few symptoms that make my life truly difficult, however, the doctor did prescribe a med that helps alleviate the major one i experience, which is pain all over.  the pain is now mainly in my feet and in my right hand.  some times my stomach hurts, meaning it feels like someone is trying to meat tenderize my stomach.  some days, my eyes take time to focus and let me see clearly.  some days my mind is befuddled and i forget a lot.  my hands also are affected and a lot of times it seems i have claws for hands--that opposable thumb does not always work.  i have lost half of the hair on my head, and half of my body hair.  i dont miss the body hair but the hair on my head?  i miss it but thankfully, the remaining hair curls up so much that i do not appear to have thinning hair.  walking is hard for me as i tire easily.  i also walk like i am drunk and i fall some times--i use a walking stick now.  the pain relief med is great but it causes me to not feel full and so i eat more than i should and so now, i have weight i need to lose.  basically so much of my life has changed as i have changed drastically.  i am trying to adapt to this new life with all of the limitations, but some days it is so hard.  being in constant pain is very draining.  and to top it all off, i have a mysterious pain in my right side that i think is a hernia but so far, nothing has shown that.  i have one more test--an ABD MRI, which should show up any abnormalities (i hope).  basically my life is so different than what i thought it would be.  i am more of a recluse as i dont like to be too far from home.  since my body is not reliable--i never know if i will be able to go out and about and walk and be okay--i dont do a whole lot unless i know someone who will be there and can help me if need be.  and yet, im fine asking strangers for help--i had to have help opening the gas tank to my truck so i could fill it up.  my hands would not work.  (i was a bit embarrassed i will admit.). and my body temp is off.  i do not feel warm.  i can get hot or cold but being warm is not often.  and sometimes i start to sweat--maybe it is a hot flash, but since i did not experience any in the past 18 years since i had my hysterectomy, i do not think im having hot flashes this late in the game.  SFN causes the temperature fluctuations.  and sweating?  i get anxious if that happens as then my body tries to cool itself, then warm itself, and repeat.  and i am MISERABLE as this happens.  and food sometimes taste like it should and other times, not at all.  basically each day is a challenge as i do not ever know what to expect from my body.  i plan things and hope i get to do them, but sometimes, i dont get to do the activities.  some days, my bed is the best thing ever as im in it most of the day.  another symptom i have is what i call the winter green sting.  it is an odd sensation that is not truly painful, more uncomfortable.  and if i get too tired, it occurs all over my body, sort of traveling around.  the worst part is that it stings to breathe--the air hurts going in my nostrils.  another symptom is the holograph feeling.  there are days i know i have legs as i can see that i am standing/walking, but my legs dont feel to be there.  i feel like i am a hologram--you can see me but im not truly there.  and often this means that i cannot feel my legs up to my knees sometimes.  i am much more clumsy and drop things as my hands sometimes quit grasping an item.  my mind says to keep grasping but that message does not get relayed to my hands.    

I am trying as I promised my eldest daughter i would.  she has stepped up and is involved with all of this.  and i am proud to say that she is super fantastic with this all--especially dealing with her mother who has some nights had to be talked down as it all can be overwhelming for me.  My medical bills are a bit much and have drained me financially.  however, now that i have the diagnosis, i should not incur much more medical debt.  (paying the medical bills has slowed my home renovations tremendously.). i am finishing up my 8th year of living on my minifarm and i do have much to show for my time so far.  i still plan to do what i had planned on for this property, however, i will not finish it all before my 10 years of alimony are up.  but, as i tell my daughter, im not dead yet, so there is plenty of time.