Tuesday, December 11, 2012


 I saw the movie Philadelphia again last night ( at 4 am, hello insomia!) and I guess it just struck a nerve or maybe gave me an enlightenment. If you dont know the movie (extremely shortly synopsis) its about a lawyer- tom hanks- that has AIDS, after his boss finds out hes fired. Goes into discrimination and medical ect.
So anyhow it got me to thinking about lyme disease, the chronic issue of it being a virus- how it seems like once you have lyme that simple little colds turn into long illnesses, then into walking pneumonia, then pneumonia that needs hospitalization, organ issues, ect. It just keeps getting worse and worse. The sad part is that it takes so many years, too many. Family and friends get tired of us being sick, WE get tired of being sick. SO many commit suicide because of the frustration and loneliness. I could probably count 5 to 1 the suicide deaths to medical deaths.
Personally I have ups and downs. Right now I'm kind of down because a fellow lymie friend lost her little one the other day due to a fatal birth defect. To me it just reaffirmed that our bodies are too messed up to carry life... I just feel so bad for her.
It sucks that like an AIDS patient every time we get sick itgets so serious with us and progressive. Even though Im doing basically better I got a cold that everyones been passing around- Where others got the sniffles, maybe a little throat issue or cough; I caught pneumonia from it within a few days and was out of normal activity for a week and now 2 weeks later Im just now getting back to where I was. It sucks.
Imagine yourself in my ( a lymies, or even an AIDS patients) shoes- you have a disease that kills your immune system causing you to catch every cold and become sicker than every one else around you, your joints randomly swell. You have almost no idea when you go to bed at night if youre going to wake up to a knee thats twice its normal size or a blinding migraine or if the sniffles one day are going to turn into a huge lung issue or heart issue or a virus thats going to attack the thyroid. So many things. Then on the outside, if lucky, we look sick- unfortunately not always are others able to tell when were in pain or having a rundown day because we deal with it so often. How about the fact that one of my petsitting jobs- after finding out I have lyme- refused to use me again and asked if i could have infected their house?! Come on- how rude! Thats like asking a cancer patient to use a seperate door because you dont want to catch their disease.
It just makes me sad knowing what is to come.
Medicine is not advancing with lyme disease, theres so many unkowns, controversial testing and treatments, politics involved and who are our advocates? others of us that are sick! Sadly quite a few are not mentally stable either- I dont know if its rage and confusion BECAUSE of the lyme or because of the frustration due to lack of care, sympathy, treatment.

 Its like we are the New Age AIDS victims- How many of us have to die before we get help?

Tuesday, November 1, 2011

Friends/things Ive learned from my dogs.

So Ive come to realize even though you (I ) may admire someone that does not mean they are a friend or someone you should always follow. Which has got me to thinking, besides select family members, who I relate to most are my dogs. They have taught me so much and are still teaching me today.

Things I have learned from my dogs:
Daizey and Pandora have taught me to never give up, even when you've been beaten down and no one thinks you will get up again.

Tinker, even though most think she is too barky, happens to be the BEST judge of character- shes taught me to be wary and trust slowly, but that when you trust- to trust fully.

Pandora has taught me that even though our bodies may not be the best, we can always do our best with them.

Also to not be sorry for yourself, she doesnt care her back legs dont work as long as she gets to play with the other dogs.

Brewster has taught me to be nice to everyone even if they bite you in the face... eventually they will come around and be your friend.

Daizey taught me boundaries. With her it was her feet and food. There are some places you just dont ever let people in to.

And all 4 of them (r.i.p. my sweet old love) have taught me when a friend is sick, sad, or sore you dont abandon them but you dont smother them. You stay by their side and you stay quiet with love.

My family or my "friends" are never fully aware of what is going on. Thats just the way it is with people. Some people are open books and wear their hearts on their sleeves, others have layers and layers. We/I tend to have different layers with different people, some I let into the deep layers but for whatever reason they dont keep up with the superficial ones. Its easy to keep people up top on the first few and I think those are the good friends, ones that keep up with you, ask how the day to day is, act INTERESTED even when it doesn't benefit them.
Which is why I know I can always talk with the dogs, captive audience if you will, lol. I know they won't judge and I know they are here everyday.

Sunday, September 25, 2011

Where Im at.

Well, physically Im feeling really good these days. Been killing it at the gym and my thyroid, *I think*, has leveled out and so Im not feeling fainty much at all anymore. My joints aren't getting swollen and Ive been doing my own little strength training before some of my classes at the gym since I don't work out wih anyone anymore. Its a nice quiet 30-45 minutes of me time and I must say I can kick my butt :0) I think Im in remission again as far as lyme goes, I haven't had any of the crazy unbearable pain, Im able to focus on what Im doing, and almost all my twitches are gone again except Ive noticed when I stress out my shoulder does this annoying shrug thing- the same shoulder that "froze" about 6 months back and a couple of weeks ago was getting sluggish to move so I put myself on doxycycline for about a week and it came back to normal.
It occurs to me as Im writing this, that us with lyme refer to parts of our bodies as if they are seperate entities. As if they have their own agenda and mission. A main thread I see, especially with those newly diagnosed ( and I still get into this thought) is that our bodies are working against us, they hold us back. Im here to say that only we hold ourselves back. Not just those of us with lyme, but the ones with body image issues (Im guilty here as well), or with mental or physical handicaps. Only YOU limit your potential. There are things I have failed at, plenty of them. Currently with Protandim I feel like Ive failed a lot of people by going about getting them the info the wrong way and now they refuse to listen and that could cost them dearly. I failed at being the perfect big sister to Nick and Delayna either by doing too much for them or too little. I failed Daizey, oh did I fail her... but you know what? Its not the amount of times you fall but the number of times you stand back up.
 Im getting up again, it's hard. It's killing me. But in a lot of people I see inspiration. My grandma/ grandpa and mom and dad are big ones for what they've accomplished in their lives- for being active politically and investing so much love into our family and fighting so hard for us. In my friend G who overcame breastcancer and is working diligently everyday to help others suffering with maladies, and Jess who is helping her do that. To Juliana who I have never met but am friends with online and has had a very bad time of late with the progression of lyme but still continues to push for her rights to treatment and to be a great mom to a gorgeous little boy even when its excruciating for her to hold him. To Leslie and Tracy and Tamara and Erin who are some of the best moms I know and also (3/4 of them) some of the best business partners one could have. To my longest/ unnexpected friend Michelle who has gone through so much in the last couple of years but keeps plucking along and I KNOW good things are going to happen for her if she just keeps trying. There are tons more but as I type this free-written thats what comes to mind and it's not what I originally intended to write about tonight.
No matter where Im at mentally I know I can think of these special people and draw solace in the fact that if they can strive and push forward, so can I. No matter if Im having a bad day which lately has been more mental than physical or if I were to become disabled due to this disease, I think of them. I <3 you guys.

Wednesday, July 13, 2011

Post Daizey Day (D-Day?)

So... yesterday was hell. I got off work and did some running around before coming home and spending it with Daizey. I tried to get a plaster of paris pawprint (because I couldn't find clay anywhere) and Daizey said NOPE. So I didn't get one. I spent the last few hours giving her treats and brushing her-she loved that, and I got everything ready for her trip. We left early so Mom and I could get her situated and give her the special treats we brought (a wet food thats compressed so I cut it into peices and gave them to her) we got her in and set her on the blanket on the floor and fed her the yummys. She ate til she couldn't anymore- the dog with the insatiable appetite, finally satisfied- she napped for a minute or so and then ate a little more. Doc got her I.V. in with little trouble and she took a few more mouthfuls, when she was done he gave her the sedative and then the euthanasia solution. She honestly looked like any second her head would pop back up for any treat around. I thought that she would look different but it was like I was watching it from outside myself. I still can't believe its been 24 hours. I've never hurt so much. 
I have so many stories about her. From when we first got her at less than 6 wks old from the pound and she'd make little puppy barks (and poops) all night in her storage container lol. Then when she got older and CHEWED through her fence pen or when we noticed that she was jumping on the swing on the backporch to chew the armrests and rock (we still have the swing...and the teethmarks). The time she was beaten, the acute kidney failure/the only time she wouldn't eat. The back surgery, the mouth surgery, countless xrays on her heart and lungs because of problems. Going to the park and her favorite spot (pictured). The last time we went we had to stop so many times, what used to be a 10 min walked turned into well over an hr and me carrying her back to the car. Oh, the time she went to pee out front and got lost for an hr while we hunted for her... Im going to miss her so much even though I know it was the right thing to do. Like Ive said- She's not a purebred or ever saved anyone from a well, but she was my dog and I loved her.

Saturday, July 9, 2011


Well this post has almost nothing to do with lyme (I'll get to it first and over with) but will mostly be about Daizey.
As far as the whole lyme issue goes, I'm just getting over a small flare. I also just found out my thyroid has gone haywire, my level is supposed to be less than 35 and it's 941. It's why the doctor thinks Ive been having issues going out in the heat and why I think Ive been feeling crappy and missing the gym some lately. So I'm supposed to have another ultrasound (which the doc didn't write in my chart and so I had to cancel today's appointment) and see if the nodules we found last year have grown and are causing this and I am to see an endocrinologist.

As for Daizey, it's time to let her go. She's my best friend and has been a part of my life for such a long time now that it's going to be surreal not having her around. As she's gotten older, much like an older person, she's required a lot more care but I truly don't think she's happy anymore. She's gotten quite senile and we have been finding her in odd places like under chairs or the sofa (and for those that know her, she's not a small dog) and she's gone blind recently and fully deaf. I think sometimes it scares her. She has severe arthritis in her back and hips that we've been managing with pain medicine but her muscles have atrophied to where when she does stand her legs crisscross and she falls again. She can't walk more than a few feet and when she does walk she gets so out of breath. I was watching her last night and she'd wake up and walk a few feet, fall over, and head head would droop and she's sleep for 5 minutes then start the process over again. Her body is so tired.
Her favorite thing to do (besides eat lol which she still has energy to do with a little gusto) was to wiggle on her back on the carpet. I think she liked the feeling. But she hasn't been able to do that in the last year.
She's had a long eventful life.
When she was a young dog (no more than a yr or two old) she would "eat" the water from the hose while mom was spraying. She would jump all around and knock us down because it excited her so much but it also caused her to get pneumonia. She was sick on the back porch (she lived outside when she was young) and ate mom up one side and down the other when she put her in the car to take her to the vet.
She also ATE the little pen we kept her in when the neighbor kids came over, she wanted to play lol. Except for the one time she dug under the fence to play with the neighbor dogs and got stuck under their shed and tried to bite the lady. She came running out though when she saw me and didn't dig out a single time after that.
 When she was about 7 yrs old I started my 1st job as a kennel tech. and a few months into working there I noticed Daizey was coughing a lot so I took her in. Doc said she had heart worms and that we needed to treat her or she'd die. So of course we treated her, she got sick in between the treatments and stayed in the hospital for a month. The day of her last treatment I came in to work from school and saw blood all over the kennel area and when I went to get Daizey she was in the back of her cage, covered in blood, and limp. Doc said she got nippy when he gave her the shot and so he pulled her up by the leash til she passed out (like what he did with the pit bulls that came in from the place behind us) but she bit the table and broke her canine teeth so he stepped on her head and pulled them out with pliers. I quit right then, got Daizey and called mom. We had to take her to another vet who fixed what he could of her mouth a few days later once the swelling went down and she lost a canine tooth, broke another in half and lost 3 premolars. Also he ruined her nasal cavity from stepping on it and to this day she's always had a snotty nose no matter the amount of antibiotics she's on.
A few years later we discovered a lump at the base of her thoracic spine. Because her lungs were clear I decided to go ahead with surgery and we assumed it would be cancer. She is one lucky dog because once we sent it out for biopsy it ended up being necrotic tissue from , we assume, her heart worm treatment!
She also, pulmonary hypertension from the heart worms and went into acute renal failure after her surgery (OK, maybe not so lucky dog...) and was hospitalized on fluids and I had to force feed her- she was SO bad! But she made it out OK and made a new best friend, an english bulldog by the name of Brutus.
I ended up losing that job a few yrs later and Daizey was in maintenance mode with her kidneys doing OK and just panting from the P.H. She's gone downhill slowly with arthritis, but the hypertension is gone because of protandim and her heart looks good. Her calcium level has steadily creeped up and we thought lymphoma. Well her lymph nodes in her neck began to swell 2years ago, prednisone helped for awhle, but I took her to my old place of employment after she had a few seizures, her temp was over 106- we gave her I.V. fluids, put alcohol on her feet pads and gave her Valium, she finally came out of it and we biopsied her neck with just  needle and finally confirmed that it was a salivary gland adenoma probably caused by lymphoma. My baby has cancer.
After the high temp and seizures, we think her brain "fried" a little. She got stuck in the corner of my closet a few times and her senility has gone on an all time high. She once even got stuck behind out refrigerator! We made a ramp last yr for her to get in and out since she cant go down the 2 inch drop to the backyard anymore. She feel off the side of it into a shelving unit. Now she just doesn't even go outside, we are constantly cleaning up after her, finding her stuck in places (and she bites when we get her out because she's confused/hurts) bringing her food and water, washing the pee off her when she goes and then falls in it, and medicating her without getting bit (shes sees movement and always thinks its food so we have to be careful when first petting her). She takes up so much time and energy and I wouldn't change it for the world- if she were happy or had any quality of life. My sweet girl who we've done so much for, can no longer handle being alive. The cancer and arthritis have taken so much of her body away that no matter how much she eats we can feel the bones in her body. No medicine can fix this. No matter how many extra years we've gotten with protandim and pain medicine it's still too soon for my heart to let her go. Tuesday will be Daizeys last day here with us.

Saturday, May 28, 2011

My newest accomplishments

So, to get right into it- I've always had bad lungs. I think it's because I was born too early (and was jaundiced) and even when my brother was born, all the pictures I was wearing a surgical mask because even then I was fighting pneumonia.

My lungs have been so scarred up due to the bouts of pneumonia and bronchitis, 2 yrs ago a ct scan found sever inflammation and "ground glass like infitltrates" in the bottom lobe of each lung (scarring and unusable lobes). I began seeing my pulmonologist regularly, a few times I was a mere 2 points away from being put on oxygen. That is a scary thing to be told when you've just turned 22. I was already going to the gym regularly and thought that that would've helped but it didn't. No matter what I did- more cardio classes, more cycling, less classes- it stayed the same. My lung capacity just plain sucked. It didn't cause me too many problems, I didn't really notice how bad they had become because it was such a gradual deterioration.

Also around this time I had bloodwork done and discovered I was severely vit. D and B12 deficient. Which is what I thought would explain my severe fatigue and joint pain all over since I was 18. My thyroid was also on the low side of normal, but I've been hyporthyoid since I was 11 and whenever I go to a new doctor or get bloodwork done I just like them to check and see where it is.

Well, I started prescription Vit D for a few weeks and was told that it would be what it would be when I finished- my level was 12. Normal range is 20-100. Low D can cause a lot of different issues and again that's where I was told my pain was coming from.

So a good friend of mine and I were talking. She's a personal trainer now and has helped me quite a bit, I asked her- is there something that you think would help me? She told me about a nutriceutical that sounded really promising and had 5 studies published where I knew was very important, the National institute of health. We look on there all the time for the newest animal studies and human doctors use that as their guide.

Well I started taking this pill and honestly didn't notice a whole lot of difference. A few weeks into being on the product I went to my doctor in severe pain, once again. I was so tired of hurting and I didn't want to complain to anyone for fear they think I was either making it up or causing it myself because of the gym. At this point my entire shoulder was frozen, I couldn't move it and trying to would bring tears to my eyes. I was at the point of sleeping in the living room in a straight backed chair because even the recliner hurt when I went to sit up... I told the LPN to check me for anything that could be causing this (x rays showed some arthritis in both shoulders) and I was told my bloodwork came back normal.

I always request a copy, and when it came in the mail I saw that I had a high titer for lyme disease but when they did a test for the bands I needed four to be positive and I had three, and needed 2 positive on the second and only had one. So I was just barely negative according to the IDSA. Researching the disease I found that the testing is highly innaccurate and political and that I also had MANY of the symptoms.

I decided to take my healthcare into my own hands and saw an infectious disease doctor who, based on secondary blood tests and symptoms, finally doagnosed me with lyme disease. THIS TOOK 5 YEARS from start to finish. This doctors "solution" was to give me 14 days of an antibiotic. 14 days is not going to kill 5 yrs of spirochetes in my blood stream and the cyst forms that are in my organs. So at that point I had reached a dead end. I was about 6 months into taking the nutriceutical...

I noticed that my flares of what I now knew was lyme disease get further apart, so I didn't pursue the correctlyme treatment another doctor wanted to perform of placing a port either in my chest or securing a PICC line from my arm to my heart and giving my IV antibiotics 4 hrs everyday.

By 8 months on the product I had my final flare.

I am now 15 months on. I haven't flared in 7 months, my Vit D is at 30, My b12 level is within normal range and climbing, my thyroid is WORKING and NORMAL, my lungs have 0 inflammation the scarring is down 50% and the bottom lobes are spasming and trying to work again! I do have asthma like symptoms constantly now due to this but I know in a few months time my lungs will have remembered how to work and will be healed.

I was a skeptic. I hear all the time that people want to try this for just a month or two. I can't imagine where I would be healthwise had I not stuck with it. You never know what health crisis is going on in your body and it's ridiculous to think you know what every cells intention is.

Wednesday, May 25, 2011

My two Whys

I've been asked what my "why" is many times in this business. At first I thought my why, of course, was to help people and to make money doing it. Well, that's a, OK reason. I've always been conscious of other people, I always have taken people at face value and it's hard for me to keep secrets about myself when I connect with a person, but I've always connected better with animals. Daizey is my oldest dog, she is well into her teens and she has been the shoulder I could cry on since I was 7. Anything I felt too embarassed to tell another person, Daizey wouldn't chastise me for whatever happened. So my thinking about my "why" turned into wanting to help the animal community, children and breast cancer survivors have so many fighting for them- animals just have crazy PETA nuts. My heart goes to the senior and handicapped ones (I own one of each lol), the ones that are 15 yrs old in a shelter because their families couldn't take care of them anymore...or just didn't care. The ones wagging thier whole body because their legs don't work- and I used to have to euthanize them.
1-That was the most heartbreaking and rewarding volunteer work I have ever done. I was in the euthanasia room taking the place of the poor person that had to do that everyday. We worked 8am-4pm, taking a break every 2 hrs to wipe the tears and breath. When we started again it was to go to another cage of puppies/ kittens, old/ young, not cute enough to be adopted in the allotted time, pregnant, heartworm positive...and to take them up to the exam table slide a needle into their vein and end their life while they were still trying to kiss me.The solace I got was that even though we were ending their lives, atleast I could show them love before the end not knowing if they ever recieved any before that point. Atleast I could pet them and hold them til they fell asleep and fell down onto the table.
I want to help them, I want to alteast be able to provide a sanctuary or hospice home to the old or handicapped ones so the younger ones can be placed from the shelter.
My second "why"
I want a home of my own, I want babies. Since being diagnosed that second dream, out of conscienceness, Ive decided to take away. I don't want a child being born with this because of my selfishness. I've seen a few studies saying it can be transmitted in utero but it really hit home when a friend I've made in the support group tested her kids and 3/5 are positive. Knowing and being ignorant are 2 completely different things, now that I know I have made my own choices. I have put away some money each week into my "adoption account". As I progress in this company, I am so excited to know that, that account is going to grow so much faster than I originally intended- I'm going to be able to buy my own home much quicker which means I can start adoption proceedings that much sooner. I am SO ready for that chapter of my life to begin, I want to do it the right way and provide a loving home (with a lot of disabled pets : ) to some great kid.
I realized in order to help others, I have to help myself first.
I am so thankful to be given this opportunity, I am so excited to share it with those that will listen and for those that don't- Your "why" must not be big enough.