Just Imagine......Long Term Memory Loss

Just imagine for a moment...

Remember that big family trip you took 5 years ago to the waterpark hotel, oh wait no you don't you were just recently told about it by your 8 year old niece. 

Remember that Christmas play your son did at your church and how adorable he was singing away, oh nope can't remember that one either.

Remember your 10th Anniversary trip with your husband, nah not even a little bit.

Oh and when each of the boys had their 1st Birthdays and how they grabbed their cake and we all sang to them, hmmm nope don't recall (that one I can't even type without tearing up).

Imagine looking back at pictures of special events, BIG events like weddings, vacations, your children's plays and school programs and worst of all your children's Birthday's and having no recollection of ever being there.  Imagine looking at pictures and having to ask where they are from and what you were doing there.  I still very rarely look back at past pictures, it is just too hard and I end up in tears instead of reminiscing and having happy memories like I used to do.

When I went into the hospital and left with many memories gone forever I had no idea just how hard that would be.  When your kids look at you and say "Hey, Mom remember when..." and you have to look at them and say "no, hun I am sorry but can you tell me all about it".  Can you even fathom how heartbreaking that is.  As I hold back my tears and listen to my 5 and 8 (now 9) year olds tell ME about our memories it is just a punch to the gut. 

Sometimes it is interesting, when I hear funny stories again like it is the first time, or to hear things that happened that you forgot that are hurtful or sad and having to deal with what comes with that all over again. 

The other night my husband and I watched a movie,  a few minutes in he said we had already seen it, but for me it was brand new!  I am a cheap date now, grab an old movie I have already seen and I am a happy girl lol!  He asked me once why I laugh about it sometimes around other people and make light of it when he knows how hurtful this whole experience has been.  I explained it was either that or cry, you can't cry over it all the time I have to try my best to accept it and laugh when I can!

My lost memories are really from after the kids were born on, it is pretty fascinating really, my memories before that are very vivid and many nights when I can't fall asleep they run through my head.  I mean high school and college was fun and all (maybe a little too fun on occasion), but let's be honest some of those memories I wish I lost instead of ones with my kids ;)  I have gone way back into my emails a few times about the adoption or other big things and it blows me away that I can lose such huge details.  I know each day there will be something new I will be reminded of and may even have to be reminded of again because even though they are told to me they aren't in my memory bank anymore, they are just stories to me now.

My life will never be the same, I am a new me, can I accept that those memories are wiped away, I try, not much more I can do but try. Every. Single. Day.  I have learned that life is short, memories are precious and taken advantage of.  I have also learned that losing your memory can make it easy for people to use against you.

Here is what memory loss does NOT make me...

It does not make me stupid
It does not make me less of a person
It does not make my opinions have no value
It does not make what I know right now today untrue or invaluable
It does not give anyone the right to take advantage of or capitalize on this loss against me

More importantly, here is what I am so incredibly thankful for, spared were some of the most important memories of all.  I can remember both of my boys birth's clearly and I can remember the day we got the call that we had a daughter waiting for us in S. Korea (I have to admit it is a bit sketchy, but I do have memories of that day).  I do remember who people are, there are some people who I really only knew in passing that look familiar but I can't quite place them.  I am also so thankful for the grace of many people in dealing with this unending time of me going "huh, when was that, what happened" and them being patient in explaining those memories.  I know it must get old and tiring for them too, but for the most part I have only been met with loving kindness dealing with the loss.  My husband and kids always find ways to bring humor into my daily stumbles down memory lane :) For that I am so grateful!

I am sure this won't be my last post on my memory, it is just scratching the surface. I could go on for days, it is what keeps me up most nights and effects me on so many levels that are hard to process so I imagine I will be trying to process them here.

Symptoms

Lyme Disease symptoms, in my opinion this is what only people with Lyme can really wrap their head around, most people don't have a grasp on what this disease is truly like for us.  I think Lyme has literally affected every inch of my body inside and out in one way or another at some point of this journey so far (I will spare you from most of the gritty details (-:  ).  It is a crazy disease and that is an understatment!

• The Tick Bite, fewer than 50% recall a tick bite or get/see the rash (I have read even lower than this percentage ever see a rash, I never did)

1. Rash at site of bite
2. Rashes on other parts of your body
3. Rash basically circular, oval and spreading out (more generalized)
4. Raised rash, disappearing and recurring

Head, Face, Neck

1. Unexplained hair loss (I lost about half my hair last winter/spring, highly recommend Biotin supplements for this)
2. Headache, mild or severe, Seizures
3. Pressure in head, white matter lesions in brain (MRI)
4. Twitching of facial or other muscles
5. Facial paralysis (Bell's Palsy, Horner's syndrome)
6. Tingling of nose, (tip of) tongue, cheek or facial flushing
7. Stiff or painful neck
8. Jaw pain or stiffness (one of my first symptoms was severe TMJ pain)
9. Dental problems (unexplained)
10. Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose

Eyes/Vision

1. Double or blurry vision
2. Increased floating spots
3. Pain in eyes, or swelling around eyes
4. Oversensitivity to light
5. Flashing lights/Peripheral waves/phantom images in corner of eyes

Ears/Hearing

(this is a dandy one, you are sometimes so sensitive to noise that even your children's laugh sounds like standing next to a speaker at a rock concert, yet the ringing in your ears is SO loud you can't stand to have silence, awesome!!!)

1. Decreased hearing in one or both ears, plugged ears
2. Buzzing in ears
3. Pain in ears, oversensitivity to sounds
4. Ringing in one or both ears

Digestive and Excretory Systems

1. Diarrhea
2. Constipation
3. Irritable bladder (trouble starting, stopping) or Interstitial cystitis
4. Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System

(I am no wimp to pain, I had my 2 bio babies all natural, but being in intense pain 24 hours a day is unexplainable)

1. Bone pain, joint pain or swelling, carpal tunnel syndrome
2. Stiffness of joints, back, neck, tennis elbow
3. Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems

1. Shortness of breath, can't get full/satisfying breath, cough
2. Chest pain or rib soreness
3. Night sweats or unexplained chills
4. Heart palpitations or extra beats
5. Endocarditis, Heart blockage

Neurologic System

1. Tremors or unexplained shaking (in other words when you can't keep your food on your fork to get it into your mouth, just one fun example)
2. Burning or stabbing sensations in the body
3. Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
4. Pressure in the head
5. Numbness in body, tingling, pinpricks (another one of my first symptoms pinprick feelings in my palms and feet/calves)
6. Poor balance, dizziness, difficulty walking (my walls/doors and I are close friends!)
7. Increased motion sickness
8. Lightheadedness, wooziness

Psychological well-being

1. Mood swings, irritability, bi-polar disorder
2. Unusual depression
3. Disorientation (getting or feeling lost)
4. Feeling as if you are losing your mind
5. Over-emotional reactions, crying easily
6. Too much sleep, or insomnia
7. Difficulty falling or staying asleep
8. Narcolepsy, sleep apnea
9. Panic attacks, anxiety

Mental Capability

1. Memory loss short and long term (years of memories lost because of the seizures)
2. Confusion, difficulty in thinking
3. Difficulty with concentration or reading
4. Going to the wrong place
5. Speech difficulty (I often put the wrong word in a sentence like ice for water, I also will not be able to find a word that I am trying to say)
6. Stammering speech
7. Forgetting how to perform simple tasks

Reproduction and Sexuality

1. Loss of sex drive
2. Sexual dysfunction
3. Unexplained menstral pain, irregularity
4. Unexplained breast pain, discharge
5. Testicular or pelvic pain

General Well-being

1. Phantom smells
2. Unexplained weight gain, loss
3. Extreme fatigue (getting out of bed only to take medicine and then back to bed 2 hours later, not atypical, don't worry I don't leave my kids unattended)
4. Swollen glands/lymph nodes
5. Unexplained fevers (high or low grade)
6. Continual infections (sinus, kidney, eye, etc.)
7. Symptoms seem to change, come and go
8. Pain migrates (moves) to different body parts
9. Early on, experienced a "flu-like" illness, after which you have not since felt well.
10. Low body temperature
11. Allergies/Chemical sensitivities
12. Increased effect from alcohol and possible worse hangover

I think this list I found is a decent description of symptoms, but I think there are many more not covered here.  This doesn't mean that every person suffering from this disease has all symptoms, some have a handful and some, like myself, have too many to count and each of those to varying degrees.  Often the symptoms come and go, many of them I have had in the past, but it doesn't mean new ones won't pop up.  My newest symptoms are my face is constantly flushed, nausea and lack of appetite, smell sensitivity and once a month the whites of my eyes get red and hurt.  You can never guess from day to day what you will be battling and how you will feel.