I am lounging in my recliner having my Myer's cocktail (Vit. C IV) drip into my PICC so I figure I may as well take the time to update my blog a bit, it has been quite a week! I started doing the cocktails last winter and always crashed with exhaustion the day after so I was hesitant to start them up again, but want to really boost my immune system at the same time so I figured I would try it again. Last Friday I had a horrible reaction to the IV and immediately crawled into bed for a couple of hours before I could get up. My entire body was shaking, I was freezing and I was just exhausted instantly. Once I was able to get up I had extreme nausea the rest of the night. Needless to say I was/am scared to try it again, but am hoping for the best this time, we shall see.
I called the pharmacy I got the IV from and talked with the pharmacist and we think I was probably having a hypoglycemic reaction because I haven't been eating much (fun reaction to a new medicine, no appetite) and it was probably going into my line to fast. This time I made sure to eat a full lunch and I will be stuck in this chair for 2-3 hours instead of 1, hopefully that will do the trick!
After I did my cocktail last Friday I noticed blood in the line I used before I flushed it with the saline and heparin, but I was able to flush it fine and still do my IV antibiotic that night without any problems. Sat. night I went to do my IV and my main line was full of blood and clogged. So my husband and I got the joy of spending Sunday at the ER having them break up the clot, luckily it worked and my line has been ok so far. I really didn't look forward to going to the hospital and having to explain why I had a PICC and that I have had it for almost a year etc., but they were really amazing and sympathetic and not doubtful of the treatment (at least not to my face) which was so nice!
Tuesday I saw my LLMD (Lyme Literate Medical Doctor). I knew I have been sliding backwards a bit since we stirred things up after my last appt. with a change up of some of the meds, but it is still frustrating and scary to have new symptoms pop up and old ones start to come back, reality of how much further I have to go kicks in. I feel like I have been in a pretty steady herx for the last month or so so we lowered the dose on one of my meds to hopefully get over this hump. The insomnia has been AWFUL so we played around with some things and (knock on wood) I have had a couple of nights of decent sleep!!! My night time cortisol levels are extremely high so that is most likely the culprit and I am supplementing that now and he had me increase what I was doing. No wonder I am wide away at 1am.
Overall it was a good visit and we have a plan of action for my next steps. We both feel I have Bartonella and will need to attempt to treat it again in the future. Right now I need to work out a plan with my Neurologist on my seizure meds before I can go there though because the Bart. meds interact with them and I lasted one week when we tried to treat before and I was knocking on death's door, didn't think I was going to make it through that one. I have no doubt I am no where near done with this journey, but am thankful there are still options for my treatment and have a Dr who is open to my thoughts on all of this when I have opinions and concerns!
Sunday, December 11, 2011
Wednesday, November 23, 2011
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.
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.
Tuesday, November 22, 2011
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!
(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!!!)
Digestive and Excretory Systems
(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)
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.
- 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)
- Rash at site of bite
- Rashes on other parts of your body
- Rash basically circular, oval and spreading out (more generalized)
- Raised rash, disappearing and recurring
- Unexplained hair loss (I lost about half my hair last winter/spring, highly recommend Biotin supplements for this)
- Headache, mild or severe, Seizures
- Pressure in head, white matter lesions in brain (MRI)
- Twitching of facial or other muscles
- Facial paralysis (Bell's Palsy, Horner's syndrome)
- Tingling of nose, (tip of) tongue, cheek or facial flushing
- Stiff or painful neck
- Jaw pain or stiffness (one of my first symptoms was severe TMJ pain)
- Dental problems (unexplained)
- Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
- Double or blurry vision
- Increased floating spots
- Pain in eyes, or swelling around eyes
- Oversensitivity to light
- Flashing lights/Peripheral waves/phantom images in corner of eyes
(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!!!)
- Decreased hearing in one or both ears, plugged ears
- Buzzing in ears
- Pain in ears, oversensitivity to sounds
- Ringing in one or both ears
Digestive and Excretory Systems
- Diarrhea
- Constipation
- Irritable bladder (trouble starting, stopping) or Interstitial cystitis
- Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
(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)
- Bone pain, joint pain or swelling, carpal tunnel syndrome
- Stiffness of joints, back, neck, tennis elbow
- Muscle pain or cramps, (Fibromyalgia)
- Shortness of breath, can't get full/satisfying breath, cough
- Chest pain or rib soreness
- Night sweats or unexplained chills
- Heart palpitations or extra beats
- Endocarditis, Heart blockage
- 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)
- Burning or stabbing sensations in the body
- Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
- Pressure in the head
- Numbness in body, tingling, pinpricks (another one of my first symptoms pinprick feelings in my palms and feet/calves)
- Poor balance, dizziness, difficulty walking (my walls/doors and I are close friends!)
- Increased motion sickness
- Lightheadedness, wooziness
- Mood swings, irritability, bi-polar disorder
- Unusual depression
- Disorientation (getting or feeling lost)
- Feeling as if you are losing your mind
- Over-emotional reactions, crying easily
- Too much sleep, or insomnia
- Difficulty falling or staying asleep
- Narcolepsy, sleep apnea
- Panic attacks, anxiety
- Memory loss short and long term (years of memories lost because of the seizures)
- Confusion, difficulty in thinking
- Difficulty with concentration or reading
- Going to the wrong place
- 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)
- Stammering speech
- Forgetting how to perform simple tasks
- Loss of sex drive
- Sexual dysfunction
- Unexplained menstral pain, irregularity
- Unexplained breast pain, discharge
- Testicular or pelvic pain
- Phantom smells
- Unexplained weight gain, loss
- 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)
- Swollen glands/lymph nodes
- Unexplained fevers (high or low grade)
- Continual infections (sinus, kidney, eye, etc.)
- Symptoms seem to change, come and go
- Pain migrates (moves) to different body parts
- Early on, experienced a "flu-like" illness, after which you have not since felt well.
- Low body temperature
- Allergies/Chemical sensitivities
- 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.
Tuesday, October 18, 2011
One year ago today....
Not exactly the type of "Anniversary" someone really wants to have in their life, but, well here I am. A year ago today I was with my husband on the way to his office to help out for the day. We pulled into the parking lot and I suddenly didn't know where I was, how I got there, where my children were etc.. Needless to say it was terrifying. I guess you could say I snapped out of it for about 5 minutes or so and then came back to reality. I made it through the rest of the morning and we headed to an already scheduled medical test (I was having multiple medical issues for a while and searching for answers, but more on that in a future post) and once that was over I had another one of these "episodes" so we cancelled the rest of my husbands appointments and headed to the ER.
Never would I have guessed when I woke up that morning that I would be spending the next 5 days living in a hospital. In those 5 days I learned that those "episodes" were actually seizures, I had many more of them during my stay and for months afterwards. Why I was having them and the numerous other symptoms I was having of course went unexplained. I had test after test in those 5 days, but still I left with no answers.
That wasn't the only thing I left the hospital without. When the 5th day rolled around and I was leaving to come home I also lost years of memories, sweet precious memories that I can never get back. I can't remember my children's first days of school, I can't remember their birthday parties, vacations, family events etc.. At first I thought it was just from the summer of 2010 through the hospitalization, however as time went on I realized it went back years not months. Still something is brought up almost daily that I have no recollection of. Imagine having to ask your 8 year old son about a past event because you can't remember. I have so much more to say about memory loss, but again I will write more in a future post.
Backing up a bit, I knew all those months when my symptoms started to appear and my health was rapidly declining I was dealing with Lyme, unfortunately none of the Dr's I saw were educated on Lyme and I was being tested with unreliable labs and coming up negative and searching for lots of other causes, MS, Fibro etc.. Shortly after the hospitalization I found out about the right lab I needed to be tested through and FINALLY I had the truth right there in front of me, a clear positive test for Lyme.
How sad (but NOT uncommon) that I had to diagnose myself without the help of the medical community I reached out to. It frustrates me to think that what if one of those Dr's had looked into Lyme further and I had started proper treatment, would the Lyme have gone to my brain to cause those seizures and lose all those previous memories? There is no answer and I try not to dwell on that, but it just shows how far we have to go in education on Lyme Disease to help others so they never have to be in my shoes and the shoes of countless others.
This past year has been the hardest year of my life and I know I have a long road ahead of me. Yet even with all the trials I have learned that I have the most AMAZING and loyal husband in the world. He left my side only once during those 5 days in the hospital (for a quick run to the store). He has picked up household chores, grocery shopping, pretty much living as a single parent for months until I could physically pitch in and help a bit more. My extended family also put their lives on hold to be with me when I couldn't be alone after the hospital, taking care of the kids while my husband worked, drove them where they needed to be and the list goes on. I have also been touched by the caring and incredibly generous acts of others. Prayers, meals, rides, gift cards and other support is SO helpful and so appreciated. I don't know how we could have gotten through so far without everyone in our lives.
This post is probably a mess and I know I jumped around a lot, sorry. My brain is a bit fried today thinking of that day last year and all I have been through so far and knowing there is no end date to all of this. I hope to use this blog as an outlet and be able to look back and remember what my journey has been (since I still struggle with memory issues to this day).
A HUGE thank you to Mommalyme for setting up this blog for me, I SO appreciate it :) Check out her blog for another glimpse into life with Lyme http://www.mommalyme.com/
Never would I have guessed when I woke up that morning that I would be spending the next 5 days living in a hospital. In those 5 days I learned that those "episodes" were actually seizures, I had many more of them during my stay and for months afterwards. Why I was having them and the numerous other symptoms I was having of course went unexplained. I had test after test in those 5 days, but still I left with no answers.
That wasn't the only thing I left the hospital without. When the 5th day rolled around and I was leaving to come home I also lost years of memories, sweet precious memories that I can never get back. I can't remember my children's first days of school, I can't remember their birthday parties, vacations, family events etc.. At first I thought it was just from the summer of 2010 through the hospitalization, however as time went on I realized it went back years not months. Still something is brought up almost daily that I have no recollection of. Imagine having to ask your 8 year old son about a past event because you can't remember. I have so much more to say about memory loss, but again I will write more in a future post.
Backing up a bit, I knew all those months when my symptoms started to appear and my health was rapidly declining I was dealing with Lyme, unfortunately none of the Dr's I saw were educated on Lyme and I was being tested with unreliable labs and coming up negative and searching for lots of other causes, MS, Fibro etc.. Shortly after the hospitalization I found out about the right lab I needed to be tested through and FINALLY I had the truth right there in front of me, a clear positive test for Lyme.
How sad (but NOT uncommon) that I had to diagnose myself without the help of the medical community I reached out to. It frustrates me to think that what if one of those Dr's had looked into Lyme further and I had started proper treatment, would the Lyme have gone to my brain to cause those seizures and lose all those previous memories? There is no answer and I try not to dwell on that, but it just shows how far we have to go in education on Lyme Disease to help others so they never have to be in my shoes and the shoes of countless others.
This past year has been the hardest year of my life and I know I have a long road ahead of me. Yet even with all the trials I have learned that I have the most AMAZING and loyal husband in the world. He left my side only once during those 5 days in the hospital (for a quick run to the store). He has picked up household chores, grocery shopping, pretty much living as a single parent for months until I could physically pitch in and help a bit more. My extended family also put their lives on hold to be with me when I couldn't be alone after the hospital, taking care of the kids while my husband worked, drove them where they needed to be and the list goes on. I have also been touched by the caring and incredibly generous acts of others. Prayers, meals, rides, gift cards and other support is SO helpful and so appreciated. I don't know how we could have gotten through so far without everyone in our lives.
This post is probably a mess and I know I jumped around a lot, sorry. My brain is a bit fried today thinking of that day last year and all I have been through so far and knowing there is no end date to all of this. I hope to use this blog as an outlet and be able to look back and remember what my journey has been (since I still struggle with memory issues to this day).
A HUGE thank you to Mommalyme for setting up this blog for me, I SO appreciate it :) Check out her blog for another glimpse into life with Lyme http://www.mommalyme.com/
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