laser

So it's been a couple months of drought from blogging as sometimes I can not muster the words to cement my feelings, as so much is left uncertain with my condition. When I was young and in high school we went through hardships on multiple levels at school and at home, and there were things I was certain I couldn't ever come back from, at least not unscathed. And yet, looking back those parts of me healed, scarred but healed. Then there were times when I felt so broken and I felt like I could never get past it but things change and mended. Time did not change in a way that erased it but I did heal from it. And now going through illness I wonder how I can ever possibly come away from this unscathed? is there a way? The truth is I don't think you pass through hardship or loss and come out exactly the same. I don't think it's possible. I think you are forever change and respond to life accordingly. However, its important to recognize that this is not the end, you can not stop living because the grief of loss can swallow you if you let it, but you can't. When your at the end of your rope you must hang on and find away through it all.

Constantly, I push myself to be more, to be better. I get laser focused on what I want and have a tendency to lose sight of everything else. (like this blog, sorry!) A sad truth is, I lose sight of myself sometimes too. I love that I can focus, it's a gift of sorts, yet I need to manage it better as there is a time and a place for that. But, the cost is great if the focus of the lens is too narrow and so it must constantly be managed and readjusted to include priorities. By this I mean learning to prioritized goals in a way in which you are giving things like school work, house work, communication, job and relationship all an appropriate amount of time each week. When I laser focus on my practicum, I try to learn everything by devoting my time to making flashcards reading the training manual, and focusing on management of situations better. I learn it faster but then, my house becomes messy, my diners become a flop, my courses are neglected, and my husband gets grumpy. Pretty much everything else is half-assed but my focus is brilliant, and its not worth it. I've learnt that its important to look at the cost of whatever your doing, and to look at what is in your control. I see that the cost of my illness is great, all I can do is minimize the damage it does on other areas of my life by preparing for flare ups, that is all I can control about it. The practicum is a grand adventure I'd love to consume my thoughts with learning more about however I need to look at the cost of it, even though it is a great thing to do and be consumed by it doesn't mean that it being good does not cost. It costs time, and if I risk spending too much time on it inevitably something else will be effected by it.  I'm finding that life is a grand balancing act and the most important thing to remember is that nothing, not even good things are worth the cost of your relationships suffering. Relationships at times need to be protected from ourselves. The Lens of my focus needs to be adjusted at all times to include people.

~ElysiaB

   
 

Rotisserie Chicken Soup

I got up today very bummed out over my recent visit to the hospital where they poked, prodded,  pushed, took blood test, did invasive physical tests (without buying me dinner first), and then ended with sending my body for tests. So after being on IV med's and finally having the infection since christmas finally-FINALLY gone. BUT still no relief of pain and no explanation of pain, I woke up today and was frustrated, I even felt a sense of forlornness towards my body and myself. Thus, when I looked in the fridge and saw that there sat a lonely rotisserie chicken that no one wanted, with a couple chunks taken out, I decided today is the day I make soup.

How to make chicken soup from scratch:

Taking out old cook books passed down to me, I carefully flipped through pages and found that it's simpler than I thought so get ready for this:

1)You take your chicken, deboned or not...and put it in a pot of boiling water. I just took my whole chicken and drowned it in enough water to cover it.

2)Add spices of your choice. I added 4 cloves of garlic chopped, a bay leaf, dash of sage, dash of dill seed, some greek spices, and parsley.

3) Leave it to simmer for 3-4 hours or if you want it fast you could use this recipe. It is suggested that you add veggies to the soup in the last 1 hours of simmering.

And so I wait and ponder what I will do with a pot of chicken soup as I don't know that we can eat all of it I may have under estimated how much the chicken could feed. It's like alone the chicken will feed a family yet in soup it tenderizes and separates into double the amount it was before.

~ElysiaB

Mortality

I write out a new post an update of my mortality, and I am faced with opening up the truth that I don't want to admit, and so I cowardly delete the post. I go through the christmas season when asked I say "I'm fine", the shared charade continues Surgery comes and passes as christmas comes and passes. The new year comes and the old year becomes memories, when asked I say "I'm recovering but I'm fine". After all isn't that what I'm supposed to say? I've tested the waters and anything different from "I'm fine" people seem either ill equipped to respond to or are unaware of their own expression of recoiling. Sometime's I wonder why? Why, do people recoil when hearing of someone else's lot in life? If I say I've been struggling with infection some recoil, others show concern but then change the subject immediately or walk away, and others are compassionate but don't have words. I wonder if hearing about illness, reminds some of their own mortality. In our culture we can go weeks without running into reminders of mortality.

The nightmare before Christmas has come and pasted leaving me with reminders of how fragile my system is. I went into surgery and the nurses and Dr.'s at Women's Hospital were night and day compared to Abbotsford Hospital they seemed as though they really cared about me and how I was doing, unlike Abbotsford where they asked me to stop crying cause it bothered them. After surgery I awoke to a nurse waiting close to my bed asking how my pain levels were. Going home I didn't realize how much pain I was actually in and how important the whole staying laying down is to recovery after all the pamphlet said I could be up and walking around in a couple of days. However, the pamphlet doesn't know me very well because although I was up and walking around I was also very quickly back to bed throwing up most of the first and second days afterward. The following week we ran to this house for christmas here and to the other house for christmas there and then ran straight back to the nearest emergency centre as I was in too much pain and missed the last christmas because I was having uncomfortable, invasive exams and tests run on my body that was still unusually bleeding. Aside from the bleeding I had contracted a bowel infection and bladder infection. Yah now I talk about these types of things openly...when did that happen....couple years ago when this became my life. It's not awkward, cause really these things just happen to me now. I hadn't realized that I nonchalantly talk about these sorts of infection until it occurred to me that people aren't like "oh no" response anymore they're just like "oh" cause that's normal now....

Acceptance is hard work. Sometimes in life we need to except that we all are asked to walk different paths so maybe when you talk about your life events they will be different from the norm, mine certainly are, but its okay to be different. Coming to a place where that's okay, is a daily thing I'm working on and it doesn't always work. Some days I don't want to accept that my life for the last 6 years has been plagued by a sickness that I don't understand but in spite of a lack of understanding it still controls me. I don't want to accept that I have a different path to walk and some days I just want to give up. But,  I take a step back and get back up and continue going onward. This became my life wether I like it or not but it's okay today my pain has flared so I'll take a time out and live to fight another day. It's important to know when the pains too much and when to take a time out. A "time out" doesn't mean folding in the towel it just means taking a break so that you can get up again later. For me a time out means I go lay down and plot my next moves from bed.

~ElysiaB  

Quick unwilling update

These past few week have been a bit of an unexpected landslide, as admittedly the new birth control has been angering my cysts, intestines, and neuropathic pain. The pain it's caused, has lit me up like a christmas tree with varying levels of pain switching as though it were on a timer. The most bothersome symptom is that I keep getting electric jolts of pain in my hand and end up dropping whatever I was holding, i.e. cell phone, fork full of food, mug I liked...etc. I called the Dr.'s office and they told me it's too vital to the surgery to go off of it would be jeopardizing the surgery that's already been moved up to December 20th. So I am stalemated by drugs that cause wicked side-effects without other options. The Cysts seem to be trying very hard to fight off the BC pill as it tries to shrink them, throughout my intestines a war is being battled, and I am in turn, in the bathroom enough times to be Clark Kent transformed into superman three times over. The exhaustion I feel is almost unbearable but, I continue, if I nap in a feeble attempt to rest I just lose time, as I will wake from the nap feeling unrested and groggy. When I sleep at night, I am told I can't reach deep levels needed as my pain levels are too high thus, chronic fatigue sets in.  

However, looking into the IUD that my Dr. recommended I allow them to insert, I did my own research and found some shocking law suits to the IUD company Mirena, which is her recommendation. As well as the fact that they cause min-abortions monthly as they do not stop fertilization, it seems they just cause a whole ton of bad thing, abortions, birth defects, cysts, blood clots, etc. It's sad they don't give you all these facts when suggesting you get it implanted inside you. 

Just one of the many things I've been going over in preparation for surgery. If left alone with my own thoughts all I can think of is one looming thing...surgery got bumped up to a week after final exam's and 4 days before christmas....Dec. 20th I go into Women's Hospital and they will take out cysts that have grown, or have formed, and they will be taking out the scar tissue that has attached to organs, or intestines after some cysts have burst and they will cauterize the area's that need that too...I push hard to keep going everyday, I attend classes, I am working on two 12 page papers and I am trying so hard but most of all I just want to sleep....eat some cream of broccoli soup...and sleep...I just want to numb this but how..this pain might not kill me but its starting to feel like a work in progress on top of papers at least...

~ElysiaB

Pumpkin Bread recipe

So after midterms in my exhaustion I summoned the energy to bake as baking is oh so comforting. My Dr. has called and on Dec. 20th I will go in for a very necessary surgery that to be frank scares me. I have been slice and diced before and now I'm short a gallbladder, which is so not cool. The recovery time for this one is 6 weeks as it's quite invasive. So as my nerves jitter I wanted something productive and comforting to do and so I  put two n two together and arrived on the conclusion that:

I like pumpkin bread 

and it is fall 

which equals it is time to eat pumpkin bread :) 

The leaves change as I sort through recipes and my pumpkin stares at me, making me feel guilty for not giving it a greater purpose. But in my searching I have come across a that looks wonderful, upon further research into it I have found the original recipe from which it came. Looking over comments of others who have tried it out I tweaked it a tad here and tweaked it another bit there and so finally below is my altered recipe for delicious pumpkin bread as best I could make. Although being me, I really like to do everything the hard way...just kidding I LOVE learning how to do things from scratch so I scoured the internet and stumbled upon this recipe for making pumpkin bread from scratch. So I followed instructions:

Part One: Make pumpkin puree from my pumpkin

1.) I cut my pumpkin up into 4 quarters

2.) I gutted the gross gooop out of my pumping

3.) I put the quarters on to baking sheets, preheated the oven for 350 and let it cook for an hour.  

4.)When it comes out scrap off the flesh, which is now musshy and slips off in places where it's bubbled. 

5.) take the chunks of soft mushy pumpkin and put it into a bowl, and start mushing it with a potato masher or fork, then use a hand held mixer to mush the rest up into puree and there you have it pumpkin puree. 

Part Two: Make pumpkin bread

Since I had soooo much pumpkin I came to a cross roads of problem number 1: half of my pumpkin.... = 6 1/2 cups blue bowl ...recipe calls for 2 cups pumpkin..sooo I doubled the recipe:

Ingredients:

2 cups butter

6 cups sugar

8 eggs

6 2/3 cups flour

4 tsp baking soda

1 tsp baking powder 

3 tsp salt

4 tsp cinnamon

4 tsp nutmeg

5 tbsp ginger (worth it!)

2 tsp cloves 

1 1/3 cups water

4 cups pumpkin

Directions:

1. Cream together margarine, sugar, and eggs.

2. Combine all dry ingredients and add to creamed mixture alternately with water and pumpkin.

3. Beat well.

4. Pour into well greased loaf pans or muffin pans 

5. Bake at 350 degrees for 60+ minute for muffins, (for loaves maybe more) or until toothpick comes out clean.

This recipe was wonderful, however my suggestion is that it is baked a bit longer for a oaf as they turned out a tad doughy inside.  

The conundrum continues...

Like a mosaic I feel broken into so many fragmented parts of who I am, dumbfounded by what this mess of pieces could possibly turn into. I feel as though I have neglected this blog as I have not wanted to share these hard feelings I am having, so I have not voiced them in entirety or made known their existence because sometimes I feel like if these thoughts are outside of my head then they become real. And that would make them a part of my reality. However, not saying anything about them will not make them disappear. A few weeks ago I finally went into Vancouver for the long awaited appointment at the BC Women's Centre for Pelvic Pain and Endometriosis, with their Surgeon. In preparation for it they have you watch rather graphic video's on why there is endometrial pain and how they can help with removal of tissue and cysts. I went in with an understanding of what we would be talking about and how it pertained to my situation. However, I was not expecting that the pain mapping would take place during that appointment or what it would entail. I was asked if we could do the mapping during the appointment, I agreed to it immediately part out of naivety, and part out of desperation. I soon realized just how unaware I was. As it included causing a lot of pain in order to find (map) where the most pain was through the use of an EV Ultrasound, which to be frank is similar to being beat with a stick from the inside out. I walked down hallway from her office in pain with tears streaming, and on the way out I was handed a packet of information on the surgery that I had also agreed to. With the promise of a surgery to take away a major part of my pain I realize just how desperate I've become. Surgery in January.... Merry christmas and Happy New Year to me....?

In the event that you are curious about said video's they can be viewed here: http://www.womenspelvicpainendo.com/resources-for-patients/

Flipping through the info packet I see that research has shown that people with endometriosis have a 40-50% chance of not being able to have kids. Reading further into the packet I learned that the chances of becoming pregnant go down with age and after reviewing this I researched further on the subject only to find that they were correct. Go figure a research facility being correct. This felt like an added bruising to an already low blow. The days that followed seemed full of deflected frustration. This is a curve ball thrown at my revised Plan what is it D? Now after much revisions were onto Plan E as in Exceptionally different, Exasperated by changes, Exhausted by revisions..... since my Plan A was destroyed by this whole getting sick matter and then Plan B was taken out by the realization that the pain was increasing and not going to go away anytime soon then Plan C was revised due to the naivety that there was a name and cure for what I had and that what I had was a singular disease. A lot has changed from the days when a plan seemed like a good idea. And I think that's just it, having a plan is a silly idea that I have some sort of control over what happens to me, these events are out of control and that is a hard thing to come to terms with.

Now that is a lot to think about and it has plagued my thoughts up until this week when I saw the Naturalpath doctor who had the results from his last lyme test. It seemed like a hail marry when he asked to do one last test after the rest had come back negative. And perhaps it was, but the result of this more specific test unveiled a less specific answer. For once in a couple years it was positive, yet is neither here nor there as it is a specific test called IgM 31 kDa Epitope and was positive, but for what? \

Well I tried breaking it down into english as lab's and doctor's seem to complicate things further than they need to be...

• "IgM refers to those antibodies that are produced immediately after an exposure to a disease, while IgG refers to a later response. Given the cyclical nature of the infection and the slow lifecycle of Lyme bacteria, you can pop positive on either type of test both weeks or years into an active infection. Your body is essentially getting reinfected constantly."  

• The 31 kDa epitope test is to confirm (or not) that the reaction seen on band 31 on the western blot is due to borrelia rather than some type of virus. Band 31 has some cross-reactivity with viruses, meaning if I had one of the viruses that causes cross-reactivity at the time that I was tested, then the reaction at band 31 may be due to the virus and not borrelia. 

 So then in conclusion, I could be positive for lyme or I could be positive for a cross reactive virus. Thus the choices are still slim and ever so complicated. The Dr thinks that we should continue with discovering wether or not it is Lyme which would include 2 weeks of Herx antibiotics and then retest. Herx, apparently hurts similar to chemotherapy. This treatment is a debatable option as it's an undetermined option as politics surrounding wether or not the medical board will allow the use of IV antibiotics in the treatment of Lyme. Thus I may or may not have something that I may or may not be able to be treated for. The conundrum continues... And so now you know the things that are causing me to worry, this isn't even including the fact that I have three midterms in two weeks. I'm not sure where I am headed, I know I need support right now because these are hard circumstances but things will change as life is not a series of still photos it is a fast paced action movie and I'm not giving up I will press onward in faith that things will continue to change as they always do and this will pass as it has to. There are only 60 minutes in an hour and then that hour is gone, it can not rewind thus the scariest most uncertain times in life must go by as minutes in an hour it'll fade away. And once it has gone something new is born from it because we are ever changing. We learn something new, incorporate it into our being or discard it but either way we are changed by it's presence, as we have knowledge of it's existence, thus we are not the same people before who were unaware. Things change, circumstances fade away, and life is consistently being reborn.

~ElysiaB    

LIfe is hard but so very Beautiful

Yesterday, I awoke in a groggy daze when my vision was still kinda blurred. And then as if remembering that it was time to get up, my body ached it's morning time ache, and I scrambled to get my legs beneath my body. The rest of the day, to be quite honest was a blur, there was stuff on my to do list so I raced here and there, all over the house... 'twas a cross between married-wifely duties, and oh-shooooot-we-have-fleas. So I whipped thru that list, then went out for coffee, came home and realized I have no idea where that cat the vet told me to watch went... looking high and low, in all her favourite hiding spots, the games box, on the sleeping bags, in the closet, on my chair, above the microwave, and everywhere in-between but alas no cat was found. Until I realized I went into the laundry room for a minute before getting called away...and upon a further search there behind the hot water tank is a little tiny cone surrounded face...poor snuffle-ufagous. Then suddenly it hit me, that growly angry tummy, I stopped everything and looked down at it like, oh dear, that was me...and in that moment I realized I hadn't eaten lunch.

As I stopped to think about it, this summer was harder than other summers past, it hurt more. As one DR. appointment after another dragged the summer away, waiting on test after test, and it was just plain hard. Monday I was afraid, and I cried out of pure frustration. This may seem strange if you've never endured chronic pain, or the frustration of our canadian medical system. Afraid because this school year has arrived and being on higher doses of Lyrica (strong pain medication) I feel a bit more energetic, like I can handle more. Thus I have challenged myself and taken three courses this semester. However, my fear is encouraged by the daunting voice in the back of my head telling me I can't do it, that I'll need surgery and then how will I continue, I could get sicker, and that life right now is too hard to continue to challenge myself. That voice is my own worst enemy and I don't agree with it. It makes me sad thinking of those fears yet I know I can push a little harder, I can go a little further, and every day I do it. Giving up is the easy way out. Life gets hard, the pain gets worse, but I feel like the little train that could, on those days I just keep saying "I think I can, I think I can...I know I can, I know I can..." there's so much wisdom to be found in children's books that apply to us even as we get older.....I would go as far as to say that those books apply more to us now as adults than as kids. There are struggles that I don't want to walk thru, there is sorrow I don't want to bear, but there is also hope. Hope and patience are virtues that as long as we hold on to them, the pain might not be so hard to bear each day.

When it is hard to hope and our patience seems thin we look up to and ask for help to a very big God who truly understands. And I think the healthiest part is that we can dialogue with God, about the pain he has asked us to walk thru. We can even go so far as to get angry as many others have in the past. We can come to him with all our emotions and in my opinion that's where the depth of my relationship with God dwells, in the ability to tell him I'm really frustrated, mad, confused, and scared because I don't understand why he has given me this kind of pain. Often I think of Job and his dialogue with God, I think he learnt more through that dialogue than he did in any devotional times he may have had, because he got to express his ugly feelings, the ones that most think you can not bring to God. In doing this he learnt to better trust God's judgement, he was put in his place when he got out of line, and in the end had a fuller understanding of who God is.

I think expression is hard because similarly with the church you might feel like your burdening the church with the heavy path your walking, when the church should be a place to share your burden. Often we don't bring angry emotions to God because we think it's a bad thing to do, we think it's too heavy, or inappropriate. He's a really Big God, that is bigger than your view of him. He can handle a child getting mad at him, just as a parent can handle sitting with a child that's angry and doesn't understand. I think if we make our relationship one-sided and share only the good stuff or only the bad stuff, or even only ask him for help but never say thank you...then perhaps we have put God in a box labeled "use in case of______". He is big and he is to be feared but he is good and also wants to know all the details of your life, why not try him? Test out your relationship with him by offering more of yourself, more areas of your life. He is not a genie, He is a father, a creator, and many more. This is my struggle I try to do it on my own when he's always there to help carry the load. It's easy to be frustrated with the church and complain that its like this, or like that, because we expect more of christians yet forget that they are just human trying thier best and in no way are they infallible. We get mad easily when the church or christians let us down yet do we tell them? It is not a good reflection of God when christians fail to be christ to each other. But as Ghandi said we need to be the change we wish to see in our world. Thus I want to be someone friends can come to, if you have a heavy burden let me lighten your load, if you need a cup of coffee and someone to listen I'll drop what I'm doing and put on some coffee.

~ElysiaB

      

My own everest

With a fiery rage my legs burned, there was a sharp pain-filled lightening storm brewing in my back and my  shoulders feel like the literal weight of the world has crashed down on them...yikes. So what has happened to me, you ask....well dear friends I have been victorious today. I hiked. enough said right!

I know I'm very proud of myself! It's an incredibly big deal, I feel like a party should be thrown. It's been.............I don't know how long since last I hiked, and I think it showed just a little bit as my huffing and puffing gave the big bad wold a run for his money. The majority of the time I hiked I couldn't help but think about the gossip that would follow, I mean sick people don't hike do they? and oh how much better I must be feeling now that I'm hiking. It's been bad enough not looking as sick as I feel but, oh the scandal of hiking! LOL. 

All that comes to mind is the quote “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”― Albert Einstein. I'm having a fish-being-judged-by-how-well-it-climbs-trees-week....do other people have those?

The thing about a fish climbing a tree is that it is not a probable thing. Thus if it does it wasn't it may not come down once it is up, or it may not do it again. Or in my case it may have been told that it probably couldn't climb the tree at all.

~ElysiaB

Can't stop, Won't Stop, Lost in Translation

“Just as my pain belongs in a unique way only to me, so I am utterly alone with it. I cannot share it. I have no doubt about the reality of the pain experience, but I cannot tell anybody about that experience. I surmise that others have their own pain experience, even though I cannot perceive what they mean when they tell me about it. I am certain about the existence of their pain only in the sense that I am certain of my compassion for them. And yet, the deeper my compassion, the deeper is my certitude about the person’s utter loneliness in relation to his experience.” (Illich, 1976).

Amazing to think that pain as it was inflicted upon a person it then belongs to them, in spite of not wanting it to belong to me, it is mine to bear. And similar to how I cannot share the feeling of this pain I cannot put into words how it feels....I can summarize that I hurt really badly today, that I have a sharp pain from under my right ear coursing down to my collar bone, or that I've been to the washroom 4 times to have my food voluntarily leave me still undigested. I can state that I can feel the pain of cysts inside my pelvic region  yet, these descriptions all fall short of fully convening how I feel. I think that there is a point where words fail me, just as my body has reached point of failing to digest the simplest foods. This is a special place to be, between a rock and a hard place. I cannot expect you to understand how I feel, or why it does not show all over my face, yet too often I make that mistake. I forget that others don't know, and I judge them based on what they do not know, for that I am always sorry. I say always because in fact it happens more often than I know. I get frustrated that an acquaintance is baffled by my healthy appearance because I go through so many untold battles. But, that is where my error lies. These battles are not untold because I cannot tell them but they are untold because words would fail me to accurately depict the feeling and gut wrenching that enriches these battles. Words can only convey so much meaning before they fail to depict everything and it would be akin to telling a tale in Chinese and black and white, the language would be foreign because the pain is foreign  and the feeling would be black and white because they are feelings only one who has been there could possibly colour in.

These past few weeks I have been learning the difference of a couple words and their relation to chronic pain, in thinking that they may help someone else I thought I'd share my lesson with all of you. Often I will say, "I'm sorry I can't ________, because I'm in too much pain". Letting others know where your at is a good idea, saying I can't but continuing anyway makes me a liar. I don't want that, in order for others to know that "I can't" actually means "I can't", I have to rephrase my wording as "I'm sorry but I won't be able to do that today" and then actually push myself not to continue, because in the end I only hurt myself. This is challanging because with all this pain I feel that I fall short in so many other aspects of life that I push myself harder to do things that I previously say I can't do. I need to let myself suck it up and accept that I won't be able to do certain things some days. Because communication is very important in relationships in general, yet when dealing with chronic pain open and honest communication is more important than ever.

Relationships hard in normal everyday settings because we have unrealistic expectations of other people around us, with the kind of pain, fatigue, and other issues I deal with relationships have grown an extra language barrier. The language of pain is one few know and even less understand. I think that in order to have better communication with people who don't understand this language of mine, it is best to treat them like ESL learners. It would be wrong to hold poorly worded comments against a person who was learning english, and similarly it would be wrong to hold poorly worded comments against a person who doesn't understand my pain. We have misconceptions that when a comment is said it is meant the way it sounds, yet I feel most of the intended meaning is lost in translation. Comments like, "Oh I thought she was better", "Can't she do a simple job", or a personal favourite "But, You look fine", or...well, I digress. These comments translate to me as the person is judging me based on appearance and since I look great, it must mean that they don't believe me that my pain is what I say it is. It hurts, cause I feel like thier calling me a liar, or being mean. However, they aren't really....Really. at least I hope not. I mean I often feel hurt cause of these little comments that shouldn't matter, because in an ESL perspective they aren't being mean, they never intended the comment to translate like it did. They just made a poorly worded comment based on their lack of understand my language. So I breathe deeply and tell myself "they meant well" at least they took the time to show concern for the situation...that counts for something. I think if I spoke german with the tiny tiny vocabulary I know, surely I would say something very very wrong and would hope that the person I spoke it to would understand that I didn't know what I was saying and thus can not be held accountable, I didn't curse at them on purpose. I would hope that they would look past my words and try and see my well meaning heart, and surely an embarrassed face if they informed me of my transgression eek! 

~ElysiaB

Small Steps Every Day

I went into the Naturalpath clinic today and looked like everybody else, just another person waiting for the Doctor.Yet, its painfully clear how unlike everybody else I am when I get home and literally crash on my couch after taking more painkillers that again don't help this kind of pain. Sometimes I wonder if its worth it fighting the pain with doctors, drugs, surgery, time, and energy. It doesn't feel like it's getting me anywhere, but tired faster. All I can think of right now is how painfully alone I am in this situation, I mean literally there's no one else home lol, but seriously since I got sick six years ago I have family and that's it. I mean there are good days and there are bad, I just feel like today isn't either. It's one of those days when I force my body out of bed and do what I have to only to come home worse for wear and realize I'm really lonely being sick all the time. I want a day off. I'm a little young to not have friends, but have two cats that I spend most of my time with. That's sad, I mean I need to get a life yet, I'm stuck in this body that gets worse, that bleeds when it shouldn't...that doesn't digest any food that goes into it, that wakes from pain, that feels at times only pain. I'd like to say it's been a rough day but truth is its been a rough couple of years. I'm trying hard not to let it get me down I truely am...but you see it's hard when I don't get a day off from this body of mine. At present, my legs are sore like I ran a marathon, my head has a shooting pain, my back burns and all I can think is that I shouldn't be complaining.

Aside from looking fine on the outside, I spent money we don't have on blood tests that are only performed in the states for Lyme and Parasites to get answers that we don't know will come. So, he took my blood, and by Tuesday it will be on it's way to a lab somewhere in the states and by ten days from now I should get a call about the results....which could be positive or negative for oh so many things... Which I am afraid of because if they all come back negative, that will mean that I have to go through with the investigative surgery and I hate being cut open about as much as the next person. But I think I'm almost more afraid of how violently I will end up vomiting from the knock out gas they'll give me. However on the up side, the surgery won't be preformed at Abbotsford Hospital, where nurses tell me to be quiet as I cry due to the pain of a gallbladder about to burst....yeah, cause that made sense. And, they wonder why I didn't come in sooner.

I am putting off calling my family doctor because it means I'll have to follow the pain specialists instructions and ask him to refer me back to the Gastroenterologist for another colonoscopy for another look into chron's and lupus. That was not on my list of 'things to do this summer' and if having a colonoscopy is on someones list of 'things to do this summer' I would seriously question their sanity....I mean who wants a "c.u.b.".....On the list of things "to do"= things to put off doing for as long as I can...is handing in a 20 page packet of consent forms and surveys to the Women's Hospital in Vancouver where a UBC specialist waits to see that they can legally cut me open for research. I didn't mind the consent form I mean I'm at wits end being this sick and seriously desperate enough, it's more the surveys of my pain and how much of an effect it's had on my life that I'd rather not allow anyone to read because then they'd realize just how much of a life I have....it's embarrassing.

And even though I'm feeling quite blue, I am thankful today for a lot of things such as:

• a credit cards that allow me to pay for tests I can't afford   
• the ability to ship my blood to a lab in the states to be tested    
• a new basement suite to rent with good landlords
• landlords that let us have our cats (my only friends..at times)
• and a husband that's my best friend

~ElysiaB

Lyme and Parasite Tests Breakdown

It seems like to find the exact research I need to compare labs doesn't exist. All I wanted was to see if these tests were available elsewhere, and if they were cheaper elsewhere and why I needed them...this is all the information I found on them collected from bits of info scattered across the online world. But it was enough to convince me that my naturalpath had the best in mind for me :) hope it helps others understand the tests better...

Lyme and Parasite Tests
Test Breakdown:

• Drawing Blood and Interpretation of tests: $700 (other dr.'s charge $1050 - $1100)
• Complete Lyme Panel:
• Tests 6050:
• #230 (IFA), #188, #189, #456, #453 (IFA, IgG, IgM), PRC, and Western Blots.
•  These tests have an 80% detection rate and over 95% specificity.
•  IGeneX Cost: $475
• For this same exact test is called Lyme Panel C at Clongen Lab and costs = $1725
• New Western Regional Complete Coinfection Panel:
• Test 5085:
• Babesia duncani, IgG& IgM, Babesia FISH, HME IgG & IgM, HGA IgG & IgM, Baratonella IgG & IgM, Bartonella FISH
• Wise to do as this test as many coinfections mimic lyme, and many ticks that carry lyme also carry multiple other coinfections.
• IGeneX Cost: $780
• These tests are newly developed and other labs such as Colegen do not have the capabilities to preform it.
• Tests Total Costs + Blood draw + Interpretation= $1955
• $455 will be taken off and only charged $1500 to make it cheaper on me.

Doctor:
Dr. Jonathon Berghamer, N.D. began his study of health and science at the University of Guelph from which he graduated in 1997 with an Honours Degree in Genetics and Molecular Biology. Subsequently, Dr. Berghamer discovered his passion for medicine and the art of healing as independent study and travel brought him through Central America and South East Asia. Upon returning to Canada, he enrolled at the Boucher Institute of Naturopathic Medicine and upon graduating with top honours, received the prestigious BINM award for Clinical Excellence. After graduation, he completed a 2-year clinical residency with a focus in Applied Kinesiology, Physical Medicine and Prolotherapy.

Lab: IGeneX
IGeneX, Inc. boast to have, "been offering "high complexity tests" since 1992. It is certified by
Centers for Medicare and Medicaid Services (CMS), formally known as CLIA and bills
Medicare in the U.S. In addition, it holds California, New York, Maryland, Pennsylvania
and Florida licensure since these States require a separate license to perform testing
for patients. To ensure that it maintains the standards of a High Complexity Testing
Laboratory, IGeneX is inspected by the California Department of Public Health (CDPH).
CMS and New York State Department of Health G\fYDH) on a regular basis prior to
renewal of licenses. IGeneX was last inspected by both CDPH and NYDH in 201 1. It
passed both inspections and the licenses were renewed."

They state that their Proficiency Testine (PT) which, "is the use of inter-laboratory comparisons to determine the performance of individual laboratories for specific tests or measurements and to monitor a laboratory’s performance. Participation in proficiency testing schemes provides laboratories with an objective means of assessing and demonstrating the reliability of the data they are producing. Such inter-laboratory comparisons involve two or more laboratories conducting the same test or measurement."

IGeneX states that, "In order to monitor the testing quality, PT must be performed on every test offered by a
clinical laboratory at least twice a year. We have an overall score greater than 98% for
all PTs for last 9 years. (More details on PT performance can be obtained on request.)
Validation Protocol Before IGeneX offers any 'home-brew' test, for clinical use,
extensive validation is carried out as described in our validation protocol (part of the
QC-QA procedure). This process has been reviewed and accepted by CDPH, CMS
and NYDH. Before a new test can be offered in New York State, NYPH has to review
and accept the new test validation."

Others researching into the same tests have found that, "IGenex tests look for DNA traces of Lyme, parasites, and bacteria through directlytesting for each strain, whereas other labs tests do not. The older Wblot/ELISA tests look instead for your immune systems *reaction* to Lyme bacteria. Thus, IGeneX uses
a more liberal interpretation of the Western Blot than other labs. The CDC surveillance criteria was developed to track a narrow definition of Lyme where there was a very high confidence that a positive was accurate. They wanted false positives to be very rare, and they didn't care about or evaluate the false negative rate." Unfortunately, this is not well understood by doctors, which has been devastating for
tons of patients. It's important to note that, "false positives are indeed rare, even at IGeneX. But IGeneX will call some results positive that the CDC calls negative. That is because IGeneX reports other relevant bands that the CDC doesn't."

The specific tests for Lyme:
IgG Western Blot shows and old, or chronic infection.
IgM shows new infection.
Both commercial labs Quest, and Colegen leave out the most specific tests for DNA bands #188, and #189 from which the lyme vaccine was originally made from. Laboratories that use FDA approved kits are RESRICTED from reporting all of these bands, as they must abide by the rules of he manufacturer. These rules are set up in accordance with the CDC's surveillance criteria, and increase the risk of false negative
results.

Here are the bands explained:
If a patient is highly symptomatic of Lyme, there is actually no point in doing the ELISA or EIA serum tests, as they do not have the sensitivity or specificity of the Western Blot that is needed in detecting Borrelia burgdorferi (Bb), which is the organism that causes Lyme disease. Contrary to what many insurance companies believe, the IgG and IgM Western Blot for Lyme disease are not the same test. Some companies will deny one and pay the other, claiming they are the same test or duplicative of one another. IgG and IgM are two completely different antibodies. IgM antibodies are the first antibodies to be produced in the body in response to an infection, and is produced in great quantity. IgM antibodies are large, up to six times
larger than the IgG antibodies. IgM antibodies, when present in high numbers, represent a new active infection or an existing infection that has become reactivated. Over time, the number of IgM antibodies will decline as the active infection is resolved. IgG antibodies are produced once an infection has been going on for a while, and may be present after the infection has been resolved. Generally speaking, the presence of IgG antibodies to an organism when accompanied by a negative IgM test for the same organism means that the person was exposed to that organism at one time and developed antibodies to it, but does not have a current active infection of that organism. When it comes to Borrelia burgdorferi (Bb), the organism responsible for Lyme disease, that is not necessarily the case.

To recap, depending on the numbers,
IgM is a sign of a current infection.
IgG is a sign of a current infection, or of a past exposure to or past infection by the
organism.
Bb can hide in the brain and cerebral spinal fluid (CSF) and by altering its surface
proteins, can remain invisible to the immune system for a long period of time. Once the
immune system figures out what it is and starts making antibodies to it, it shifts is
surface proteins once again, fooling the body into thinking the infection is over. Bb can also turn itself into undetectable cysts and various other forms (called L-forms) which also help it elude the immune system. If the immune system can't see it, the immune system can't make and, or only insufficient antibodies, which all contribute towards making the organism impossible to detect by any testing methodology, including WB. Thus, blood and urine tests for Bb can be negative, even if the patient is "challenged" by being given high dose injections of antibiotics to try to trigger a reaction from or partial die-off of Bb that will cause it to show up in the blood or urine. There are 5 subspecies of Lyme (Bb), over 100 STRAINS in the US, and over 300 WORLDWIDE! So, at least, try to get the best testing done that is available to rule this out.

The following are 3 more reasons why Igenex has the more accurate testing than other
labs: 1. Quest/Labcorp make their Lyme WB probes from Rabbit antigens. Igenex used
human samples. 2. Igenex uses samples from patients across the U.S and Europe, as well as patients
with both early and long term Lyme infections. 3. Lastly, Igenex uses a 12.5% acid gel to separate out the bands. Quest and Labcorp use only a 10% solution. Igenex has been investigated my the States of NY and CA and put through QC testing by the FDA- very difficult and stressful when the FDA comes in to investigate. And they passed.

Another reason Igenex is used by most Lyme specialist in the states is because IGenex uses Dr. Lida Mattman's techniques in finding the disease through "feeding" the bacteria which quickly grows. Through this technique IGenex looks for the bacteria in the sample as opposed to the comercial labs such as Labcorp and Quest who just look for the antibodies of lyme. This technique helps to find a Mycoplasmal infection. Which
is a type of infection that masquerades inside the blood cells own walls which masks it as to not be detected by the bodies immune system. Which is why there are no antibodies found in other lab's tests. Dr Mattman actually witnessed spirochetes exiting out of red blood cells under staining and amplification. As for the New Western Regional Complete Coinfection Panel it is a new type of testing that I have not yet found available through other labs.

References:
• Explanations about testing and labs:

• http://www.igenex.com/Website/#
• http://www.drcharlescrist.com/testing.htm
• http://www.lymenet.de/labtests/brenner.htm
• http://www.clongen.com/index.php?option=com_content&view=article&id=11&Itemid=76

• Dr.Mattman's research shown at a conference on 3 types of Lyme, and how the Mycoplasmal infection works:

• http://www.youtube.com/watch?v=WozrCFW0mRM

• Dr.Berghammer

• http://www.drberghamer.com/dr-jonathon-berghamer/