My thoughts on blogging...

I am going to really dedicate a little time to figuring out which blogging site I like best & try to make my blog more successful in the way I intended. Now it feels as though it's just pretty much another place for "ME" to vent, feel like I am just complaining but really just sharing my thoughts and how this disease is so demanding of all of me & my whole entire life. I would like the purpose of the blog to be informational & inspiring to anyone suffering or searching alike...so maybe I will keep this one to keep talking to myself! ;-) and start a second a little more structured...I have piles of websites, articles, info etc. to share. I can't wait til the day I can truly become a healthy advocate for this monster of disease so then I can truly shine through for others in need!!

A friend in need from this wretched disease!

http://www.gofundme.com/o0o9g

Another night ending with Insomnia

Man I won't miss it whenever it ends, real well rested sleep is something I have not seen in 8+years, especially past 4.... I recently bought melatonin natural sleep supplement and it actually helps some...but forgot to take early enough. Now I lay here paralyzed by the pain & stiffness eyes finally shutting hopefully more than 30 mins will go by b4 waking for 2nd time, sweet dreams to all, until next time. P.s.s I realized that my MAXIMUM time limit for staying asleep in one shot is 2 hours if I'm lucky! When I look at the clock and see exactly 2 hours gone by, do I ever feel blessed!

It's become a long week....

My week has had so many ups & downs, physically and emotionally.... I was blessed this week with a beautiful letter and a so much needed & appreciated gift from a dear friend who truly blesses me daily with the power of prayer & her wise words ;-) so my emotions & tears have been happy, sad or rather frustrated or probably both crying sessions, also from severe bouts of excruciating & unimaginable pain! Geez, the word excruciating comes up after 2 letters on the auto spell thing! I must use it ALOT!! I have found great support from a great group I have joined online- great & amazing people having to endure this horrific disease as well..... I have found so many resourceful links to share from diets to supplements & more. May be tomorrow since I am feeling so rough but I will get them here! Wondering which direction & which state to find the care & treatment I do desperately seek, & how much $$ it will cost. I feel it is the time to do whatever I need! Sick & tired of being Sick & tired!! I want to take control of my life back, this damn disease has taken 4 long years I can never get back!!

Interesting article-Part One

http://lymediseaseresource.com/wordpress/new-hope-for-most-severe-chronic-cases-of-lyme-disease-part-one/

Science Daily Article

Mystery of bacterial growth and resistance solved: Findings shed light on how bacteria form protective biofilms

Sleepy Today

Not such a great day thus far, very hard getting up. Symptoms are tenfold from my head to my toes , except I'm very grateful I am still here : ) and will be able to watch my son play baseball tonight. Hopefully it doesn't prevent me from getting there, he is supposed to pitch tonight so very excited we both are. He did hurt his foot yesterday in practice, a very heavy weight was dropped on his foot & I think he is trying to be more tough about it than he really should so.... I will pray for his foot to heal and a fun & safe game for all tonight!!! The enormous hawks around my house visited this morning like most, trying to look for my cozi bear puppy! I almost think one was waiting out there today, as soon as I brought her in there it was circling over me.... I am waiting in so hopefully very good useful information on some treatments and doctors info from a group I participate in....so for now have a wonderful day and will try to work from my computer later rather than the phone to share some info on here. Also give my fingers/hands a break! :-)

So Thankful the sun is shining again today!!

I am so happy it is going to be another sunny day here, it has so much healing power for me, i have to literally bask in it and soak in as much as i can!! I hope it sticks around!! I just want to say 1st how truly grateful I am for certain people who have by chance (well reason) come into my life in the past couple years~ a true blessing : ) I truly believe that god gives us the people we need in our lives, there is a saying/ quote I will look up & share which pertains to just that, which I love!! I woke up to read a very wonderful email first thing this morning, from a dear friend which brought tears of happiness & comfort to my eyes. God bless her, she is truly an amazing soul! I am so blessed god has brought her into my life, and blesses me with her inspiring words of wisdom & comfort. I woke up today at 5:30 am! The first time I have been able to get up before 11-12 in weeks!! And after going to sleep with the most horrific headache imaginable with nothing relieving it, i did not forsee that happening, well it's gone as well for the time being. I am very thankful for that. I am going to do some revising of the blog to figure out how to make the layout more suitable to the style I'm looking to give it and more user-friendly. I have many great articles & links etc...I want to share here, so I will spend some time here today working on this. Thank you god, for today & all I am blessed with, and thank you to all who take the time to read my thoughts. One important thing I want to share is a meeting this Saturday in Duluth MN, starting at 10am on people With "MS" who live in Lyme Endemic areas. I will post the details shortly, as the link section of this blog is one I am going to focus on revising. Talk to you again soon....

It's tuesday! I am still alive :-)

Well another yucky night last night leaving me to sleep for 12 hours feeling as though I slept for one. I get severe swelling in my brain, feeling of numbness and tingling, cracking of my neck and base of skull- internally felt! It feels like my neck is becoming disconnected from back of my head. Ya, it's about as weird of a feeling as it sounds! I wanted to share my thoughts on the "MS MOMENTUM"joke of a publications I receive , once in a while there are a couple interesting articles leaning more towards the outside looking in than inside looking out like this one. The whole thing is filled with dates of "free events" which mind you, are sponsored by either 2 big pharmaceutical companies or the very 3 "top" neurology clinics I went too! Oh and if you read yesterday's which briefly said how wonderful(kidding) one doc was who left me to literally die while on one of the "MS Therapies" he is always featured in the publications as a speaker and leading "MS" expert. Hmmm, well in my experience with him he seemed almost too good to be true nice, at my 1st appt with him than acted like he had never met me after he got the credit for starting me on the medication! I was another statistic to him, he also told me if this medication did not work for me he would have no idea what to do and would probably have to refer me to his partner who dealt with difficult to treat people & there was not much hope for me if this happened. He is entitled to call himself an expert!? Really, I don't get this, because he does what the Government ran medical associations, we rely on and the pharmecutical companies want, he is an expert!! The only expert I have become to rely on through all of this is MYSELF! And don't question any of their advice or you will be treated even worse, and you can almost always guarantee on a repetitive report on how depressed and angry you are and they have referred you to a psychiatrist!! Ha, it's such a joke. I don't wish anyone to go through this garbage, and pray for the health of everyone single person because it is a battle of self worth and reliance as much as disease.

A day of many thoughts

My over active brain has been doing circles more so than usual, I dont even know how that is possible! It is definitely not doing my health any favors but I started this blog about a month ago, hoping it to be a place to share my thoughts on where life has brought me. I didn't stay active with it like i intended, but realize to accomplish what is important I must try my best to stay on top of it. I have found so much info in the past month on my illness of chronic Lyme disease its almost seems absurd. It a seemingly endless ocean of information, good but sad for fellow fighter's! Truly devastates me that we live in a world & country of so many opportunities yet it's our very own country preventing those suffering with this debilitating disease from proper healthcare and treatment and life. A government taken over by pharmaceutical big wigs neglecting its very own people being held to answer to them!? I don't get it! There is research centuries back regarding Lyme bacteria Borrelia_burgdorferi it has been proven that knowledge of its existence and the treatment of this bacteria, along with other very serious co-infections has been covered up by our nations finest, all who we are believed to trust, it's a heinous act on human kind that this disease is allowably killing so many people because we are denied treatment and "chronic Lyme" does not exist!? Well I'm telling you it does! Im living proof, hopefully by the grace of god, I stay that way. Tell me this, if a bacteria infection goes untreated what in the world would it be called than if not chronic!!!?? How will it go away without treatment? We have doctors who have risked their very beings & educate themselves in this disease called "LLMD" Lyme Literate medical doctor's who are being reprimanded for treating and helping patients like me who are literally DYING from every fiber of their being. My initial dx was Multiple Sclerosis which has been presented to this world as a pretty terrible disease along with many others i will mention another time but in fact in my opinion it is a condition not in fact a disease. If you take the definition of the two words they are actually quite self explanatory- MULTIPLE- meaning "many" & SCLEROSIS- meaning "scarring" of a tissue or cell or part so now why is that defined as a disease? Because people are misinformed, unware and really with the multiple MS Societies and chapters & EXPERTS IN MS there is no cure, but billions of dollars are continued to be raised for this "condition". Hypocritical doctors, the very ones we look to for help and trust are able to label themselves experts in MS-why? Because they have a "special interest" in "MS" or is it the $$$ they receive to be a part of a crooked society of people profiting from endless drugs made to relieve symptoms but not heal or find a "cure"!? There is not and never will be a cure because it is a condition caused by an underlying infection knowingly being left untreated. I have no gain for sharing my opinion except the mere fact that I am one of those left to die from a so called non curable disease that doesn't exist! But in fact I do have Chronic Lyme disease which does exist & has become so severely neurological and arthritic and myalgic and I need antibiotic treatment& proper care which I cant use my ins 4 & it's going to kill me if something doesn't change. So tell me now, why is a LLMD Just that but not able to label themselves as an expert in the field of study they specialize in, when they are the ones successfully treating people, who are being chewed up and spit out over and over again with a chronic infection by your very own doctors. Dr.s who in my opinion. and in the opinion of tens of thousands of others are saving people's lives & have to keep a low profile in order to keep treating and unable to accept insurance because the insurance companies are on the same page as those covering up what an endemic disease Lyme is and don't want to cover the long term treatment many need, but in fact will cover a Tysabri infusion for MS that cost a few thousand a month that has once been taken off the market because it caused fatal brain infections l. Tiis was my last straw on there MS roller coaster, as my body literally started shutting down the first time, I had never been more terrified. I had one if those supposed top leading MS experts who was supposed to be personally monitoring me for any serious side effects! What a joke that was, he made his nurse deal with my every day phone calls that took 1-2 weeks to get a response back from her. I begged for him to call me back and he refused, told me to continue taking this Poison and he would see me in 3 months!!! Through all of this, it is the treatment of antibiotics which has been proven to make my symptoms improve tremendously while on them each time. If they are helping thousands who have been completely disabled, bound to a wheelchair & no quality of life , with thanks to our mainstream political medical community. Why are countless improvements of human life while be properly treated and cared for not proven effective!? Why is this ok?? The IDSA & CDC & doctors I'm told to see are not doing anything but depriving me of my god given right to life! I want MY LIFE BACK! I don't want to die....I am 32 freaking years old!! Dealing with this political circus for almost FOUR YEARS!!!!!

Local Harvest

Sustainable Farming Association of Minnesota - LocalHarvest

MN Farming-Healthy Eating

Sustainable Farming Association of Minnesota

Another sleepless night

Laying here wide awake, listening to god awful loud snoring, only light on is that of my tablet screen.my mind has just been racing today more each day as I realize how desperately I need to find a very well rounded,educated, compassionate, LLMD ASAP....I literally feel my body just worsening day after day and don't even know how that's even possible on days like today!! my symptoms, of severe and agonizing pain never go away but I call many of my days good days now! when they are bad, oh man....I wonder how I can do this, and how I do it mostly alone. I have minimal support,(support I do have from the few amazingly wonderful people,is always there but not into asking these days) and it's (my illness) just become such a feeling of burden in my household I just don't even talk about it much anymore.... but like I need to talk about it! ha! It always shines through each day, whether it is I can't get out of bed for days, weeks sometimes. or when I do, I am so Ill tempered and unhappy it sickens me after I realize the way I don't even hear my self speak until after. Or the way I look...some days(many) since past Thanksgiving or so, I have woke up with my face so swollen it is scary looking!! I have pictures I can share! Last July my jaw dislocated after yawning and was out of place for few hours before it got put into place not once but 3 times in the following 2 hours by 2 different ER docs, since then severe issues! I am now finding that many people with chronic Lyme have jaw issue's as well! I don't want this blog to become about me complaining as its seeming right now, but rather a place to just share without being judged, so PLEASE if your reading bear in mind I have a tendency to ramble on sometimes backed up by a very talkative outgoing personality! On that note I will say I worked up or forced the energy to make a delicious grilled dinner for my family by 9:00 tonight! : )

When I knew my life was changing

Well, I will begin with re-meeting who I knew from the very 1st moment would become the love of my life in July 2007, I knew he was the one for me. I am now 32 yrs almost 33 yrs old and have always been a single mother to a wonderful now 15 yr old son...who has had epilepsy himself since 14 mos of age. So almost half of my life has been devoted to making sure I was able to take the most out every situation and struggle he has been through to provide the very best I could for him. He shows every bit of that with the wonderful young man he is becoming! As I said in 2007, that is when I thought all of everything I had been working towards and fighting for had brought me to such a humbling point, finally meeting the man of my dreams and an amazing role model for my son & finally someone else he could look up to and count on to be something well, physically I could never be to him a man! and a father figure : ) I thought it was the beginning of our wonderfully blessed much awaited new beginning...The next "Chapter".... and to my surprise, it sure has been a VERY new chapter, but not as I thought or had hoped for at all.... It has been the most challenging time in my and their lives since October 2008, when initially I had become diagnosed with Multiple Sclerosis...and went from being a super active super mom, girlfriend, friend and person to now looking to the support of complete strangers and other people that understand what I may be going through. Long Story short just to catch you up before getting into the many details of my struggle, it has been confirmed by one out of the tens of doctors I have seen that I in fact have chronic Lyme disease....yup, I started researching this myself when the initial shock of the MS wore off and jumped through neurology hoops for MS, and it just didn't add up. None of it, my history, symptoms, treatments etc... and as I'm sure some chronically ill may know you go through periods where you  step back, withdrawal from all of the redundant fighting for your life...and that is where I am at, now seeking viable, affordable trustworthy care that is out there to start heading me in the right direction of getting some of my hope for life back. I live in the most severe chronic, neurological, arthritic, myalgic pain every second of everyday...not knowing what the very next second will bring. It is such a hard feeling to explain, and being over talked, and flat out ignored when discussing it with any of my physicians or the countless ones of the past I feel so helpless and like I am left here to die with a disease that can through time become manageable through very conventional treatments. I have lost who I am as a person, mother, gf, and every other relationship I've had in my life because this has consumed and become my life...robbing me emotionally, mentally, physically...praying every night (through some of the worst pain) for just one more day....afraid to go to sleep most nights, so terrified of how I feel when I go to bed....Chronic Lyme disease is VERY REAL, and ignored by so much of the conventional medical community...it's sad, it's a very serious endemic issue leaving so many like me not knowing how or where to get help!!