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)
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
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:
Tomorrow I will go to the Naturalpath clinic and see my doctor. He will ask me if I want to do tests 6050 and 5085....and I will answer....?
He will reiterate a lot of information at me about the state of my ever decreasing health, we will discuss treatment options based on weather or not I do the tests. And I will sit stressed over the cost of these tests and how they will effect my future. I thought if perhaps I ignored them, they'd go away...nope. I thought if I set up crowdfunding perhaps they'd be funded by the gererousity of the public, which would take the stress off of me, it did not happen. I thought if I pretend I was okay I wouldn't have to worry over tests...I could not pretend to be okay at the same time as I run to the nearest washroom to be sick. Thus my options are dwindling as always, I can ignore them no more. The truth is the options he will give me tomorrow will not compare to my actual and very real options, which are:
A) I do the $1500 dollar blood tests and fallback a semester because we can't afford to do both. Yet this option gives me the truth in 3-4 weeks of whether or not I have lyme and parasites causing my illness.
B) I abstain from the blood tests, and wait till September 19th at 12:10pm when I go into Women's Hospital and discuss with a new specialist how investigative surgery will go. Signing away consent form after consent form giving her the ability to perform surgery to explore what my insides look like in the off chance that they could actually visually see what is causing my ailments.
Seems like if I got the tests now I could find out the answers in time to know if I have lyme and treat it without needing the investigative surgery. I don't want surgery, I desperately don't won't surgery. Being drugged and cut open to further someones research in the off chance that something could be found does not sound like fun to me. Yet, option A of blood tests is too expensive, and we can't afford it. We already pay over $200 a month towards medical expensive (prescribed drugs, treatments, and specialist visits), I really don't want to lose another semester of school because I'm already 2 years behind where I should be in this bachelors degree. I've researched the blood tests in hopes that family and friends might help us with the cost but sheepishly I am having a very hard time asking anyone for help. These options don't seem like options to me they seem like death sentences. I do the tests I push myself back in school, yet find out answers and begin the choices between painful treatment options to cure my pain. I do the surgery and take a leap into the unknown will they find something maybe, can I handle the pain of healing from surgery and depression of no answers if nothing is to be found again? I don't know. All I know is I'm scared. I'm scared of always being in so much pain for so long and never knowing why. I feel like I have to jump down the rabbit hole in the pursuit of all my options because I can not sit here in pain and do nothing. I want to try to get the blood tests done, and have answers as well as know whether or not I should continue on with the surgery? while having high hopes of continuing with school come September.
As far as options go I have set up a number of crowd funding options on here to try and cover the costs of the blood tests on GoGetFunding and IndieGoGo. As well as a facebook group that has paypal capabilities. I am not good at asking for help and so I'm not asking for your help I'm simply asking for a chance at hope.
Sitting in a walk in clinic it seems interesting to see where people choose to sit down or rather who they choose to sit by. I walk in see the room randomly seated at a half full capacity and see two chairs empty and choose the one furthest away from everyone else. Why did I do that? A) the large beefy man sitting beside the two empty seats looked intimidating and B) the other half of the room looked pretty sick and being more supseptible than most I want to be as far from sick germs as I can. However all three people after me came n sat beside me. There are six other seats, I wonder if they thought like me about germs, beefy intimidation and looked to me and thought definitely not frightening and sat down. Hmm... How do you choose where you sit? Or is it random?
I've found myself in n out of Dr.'s offices, wondering where it all ends. Seems to be repetitive part of my life for the past 6 years. What I've found is that most offices do not communicate with each other thus when you are referred to a new specialist there will not only be like a 6 month wait there will also be no blood work or recent tests when you do finally get to the clinic. Note: insist on a copy of all recent tests from your Dr.'s office as a record for yourself, put it in a binder and bring for your specialist to see. Right now my binder is with the Naturalpath who says he looks at it before/after each visit.
After my visit yestarday to the Pain Specialist I cant say I'm overwhelmingly hopeful, I mean it was the same song and dance 'up these meds, try this new medication, here's the options of all the treatments we can do...and oh by the way I think you really should try the injection therapy'... When he says injection therapy he means injecting into muscles around my spine....it sounds dangerous and I don't like needles. I hate the idea of masking the pain for a little while and then having to continuously go back for injections because the pain doesn't go away it's just masked for a little while.
I'm exhausted from being exhausted, and sick and tired of being sick and tired, but more than anything I hate waiting to be better. I hate pushing myself as fast as I can straight into the ground so that others are taken care of, and I can feel good because I've done my duty. Duty, the reason I push so hard to exceed expectations that when I do excel at being okay - on the inside I'm burnt right out left heaving and panting, but I look okay. Is it worth it? All the hours I spend cleaning till my hands smell of bleach so the house can look clean and dinner is ready, all so I can look like a good housekeeper...then people that don't understand the personal toll it took to get it to look like this, can be impressed. Our appearances are simply based perspective, from the angle looking head on at you in public you look great, from the angle the private life you look tired, exhausted, and run down. We run around busy like lab rats trying to impress each other and then never fully understanding the people around us, but we sure understand the weather better. With all these unbelievably high expectations on me I feel drowned by the weight of whats expected of me because I know my limits and the people with these expectations need to get an adjustment according to my limits. They need a new appreciation for me being able to get out of bed. Because right now I'm going back to bed because if you don't appreciate all the exasperating energy it took to try to impress you why try. I suppose you could say today's a bad pain day for me and it doesn't take much to push me over the edge.
These days I've been doing a lot of packing and thinking, and I have not come to any brilliant conclusions apart from the realization of tired I am. Its 2:43 AM and I should be sleeping yet I'm awake again researching cures to any of my many defects (hashimoto's, endometriosis, fibrmoyalgia, chronic neuropathic pain, chronic fatigue, ibs, pick one) yet, where a new cure comes a new problem seems to always follow. You see after much consideration I went off of the pill due to it causing more severe fatigue and other exciting side effects that on top of already chronic fatigue just wasn't worth the pain. So after much research I found a safer, natural alternative the Lady-Comp which I've decided is worth a try if it cuts down on my liver killing arsenal of medications. But, after a few weeks of being off the pill my friend endometriosis came out to bully me back into bed just when I started feeling more awake, and all around happier. And, So I find myself again up at all hour in pain and looking for answers, it's history repeating itself seems I find a solution and a problem hits - Story of the last five-six years.
I finished school and thought I did remarkably well 77 in a theology course that I struggled through at best, and then 95 in a counselling course that I pushed hard just to finish. To me those are very good grade's considering that I had to drop a course due to pain and illness. While I can only do a couple courses here and there these achievements to others are mediocre at best, but in my books they are BIG and I'm very proud of myself. In my books these are not just grad's showing intellectual achievements, they are much more complex than that, in my books they equal my resolve to push through pain and the many challenges of illness to get to class each day, to push through chronic fatigue to study in bed, to push through pain that says I need a hospital ASAP, these grades show that not only did I get through school but I did relatively well in spite of all my hardships I look at them and think that while I struggle to be okay I can still keep trying I don't have to give up. To others a 77 is not good because they are only looking at the grade, they are missing everything it took to get to that grade. They look and see a number and thats there own issue because I look and see my efforts, my triumph and I beam ear to ear!
Today I've felt sick, right now I feel sick, tomorrow I'll feel sick, what makes it different is today I got out of bed, tomorrow I just don't know. I have pain burning up my left arm into my neck, my lower back throbs, my heads telling me I owe a large sleep debt and my body laughs at my head cause we both know that won't be paid back any time soon. I haven't updated because then I would have to admit I'm not okay even as I desperately cling to the curse of an invisible illness - the invisible part that alludes as it does look as though I am okay. I am desperate to avoid guilt, to let my pain lurk in the shadows as a dirty little secret that I wont indulge in admitting. If I admit I'm not okay it means letting others know and I cant afford the slowing down thyed make me do,
I wake up and think I'm just not up for the task of what ever comes next I just want back into my bed. Laying awake in those first few moments of morning I feel no pain because my body and my mind haven't had time to connect. Those moments are mine and in them I wonder how far I could go in life if it were blissfully painless. Then I am swamped by the pain and remember, that even though I had a plan God has a better one, and even through the pain Blessed be his Name. For I am reminded that when I feel alone I never truly am, and when I feel like I can't handle the path he's asked me to walk, I remember he sees my whole life not just my short sight and has great plan. I love Deut. 31:6 "Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." as it reminds me that God is always with me in the good and the bad, and in the pain. I guess this is why I can accept it all, because my hope is in the Lord, I know I can talk to him, I know he's there, just because I can't feel him or hear him does not make me alone. I can tell him everything I feel and know that he has gone before me and has chosen what struggles to allow into my life because he already knows how I'll get through and how it will mold me. Thinking over the struggle of not feeling like I can handle all that he has allowed for me to deal with I think about a mosaic, they're beautifully broken, yet each piece is intricately place and cemented back together in a new more beautiful way. The plate or glass was ordinary and mundane before and now it's a master piece.
The truth is that “The world is full of suffering. It is also full of overcoming it.” – Helen Keller.
It's all about how we choose to frame our trials, we can focus on us and how much worse off we are, how everyone else has gotten so much farther ahead of us and we can't catch up. That's easy, sooo easy. But, that self-talk hurts us. Self-pity is the easy way out, it's hard to look for the light when all we see is darkness at the end of the tunnel, and that when you need to pull out a flashlight. The way I see it God never leaves you, you leave him. Not because he did anything wrong but because you framed him as a genie and of course you'd be disappointed because he doesn't fit in that box, or any box.
~ElysiaB
So much to do and so little time, rushing rushing just get by. I feel it touch like the white rabbit in alice in wonderland.
I went to bed early hoping to wake up more rested and refreshed. I awoke at 8 when my husband got up for work, n felt gross still so I slept some more, I woke at 9 when the phone rang, and then went back to sleep cause I still felt gross, then suddenly it was 1 o'clock! I got up and made my husband lunch and am still amazed at how entirely exhausted I am I ate and sat to do some studying yet can not bring myself to focus on it. My mind drifts to nowhere and I feel so very sleepy, perhaps it's this awful appendix pain as its swollen and annoyed me with its consistent throbbing. Although it's hard to tell the difference between the cracked rib and the appendix they both annoy me so. And the worst part is I haven't the time for this distraction, I have classes this week with assignments due and Finals next week. Thus I'm refuse to be late for those very important dates, theres simply too much at stake, and my appendix will just have to wait. Feels like I'm struggling just to stay awake! (and thats saying something when you have chronic fatigue already)
The last few weeks my pain has gradually gone from a 7/10 to 9/10, I've gone in to the doctor and the Ultrasound and EV tests came back clear as always theres nothing on paper to show what's going on. The walk-in Dr. hardly cared enough to look at me she just sat there looking at the screen, pushed on my stomach where it hurts of course and then dismissed me with a requisition for more tests and a prescription for Tylenol 3 which has not even touched this pain.
Theres a dreadful feeling that I could always be like this. In pain with no answers. Speaking of which the blood test results came back and my iron is still awfully low which means I'm losing blood somewhere or I'm not producing enough. Yet, I know I'm losing it somewhere as I see it every now and then in the most uncomfortable places. The stool tests for parasites, and blood are still not back after at least three weeks...which is not a good sign. Food is still not digesting in me, which makes it seem redundant to eat as I can't break it down, it hurts my intestines, and it clearly does not want to stay in me. When the pain grew unbearable I went in to the Dr. last week originally it seemed like appendix yet, the Dr. said that I have all the symptoms of colon cancer so I am completing testing for it. I think the most troublesome factor is that my chronic fatigue has doubled and I feel as if I haven't slept in months. I can't hardly focus on school which is frustrating cause I'm already a touch behind I feel like I push sooooo hard to stay awake, pretend I'm not in brutal amounts of pain just to keep going and I'm still not doing good enough. Theres a million things I need to do and no time to do them, and no strength to do them. I've come to a point where it's all I can do to just survive the day, just not go to the hospital, to just get out of bed. I stare at my text rereading the same page five times and not remembering a thing a going back and trying again. I push really really hard so it's not notice that I've taken the max amount of strong painkillers. I push really really hard so that it's not noticed how far I'm falling. And at times I just want to give up, and lie down. I just want the pain to stop and be normal again. I'm trying so hard and watching everything pass me by, I'm trying so hard to not show the cracks in my armour, to not show weakness. Just keep pretending.
There's a mask I wear, and armour I put on as I get up and ready for the day. A mask to hide tears, the pain, and the doubt. The armour to show strength where behind it only lies weakness, the armour shiny and new makes the mistakes so discreat that they can be passed off as
I feel guilty and ashamed of being so weak, I try to hide the cracks in the armour I'm really discreat. It looks so nice and shiny on the surface. I buff the outter layers and keep them looking new because if anyone saw the cracks the armour might just crumble
~ElysiaB
I haven't posted anything in a while, and I can't say I'm sorry because I just haven't had anything to say. But, that's not to say I have anything to say now. Now I just feel tired of not saying anything. It's not that I've been better, or been worse, I've sort of just been. However, I read this quote today "I have pretended to go mad in order to tell you the things I need to. I call it art. Because art is the word we give to our feelings made public. And art doesn’t worry anyone." I don't particularly know who said it, but it reminded me that I miss art, because when you have those days where you feel so much good or bad or both, arts just kinda the greatest thing in the world because you can work out how you feel while you paint and know one has to know how you feel. Sometimes I look back on a painting and I think wow theres some real passion and emotion in there but I can't remember what I felt when I painted it, I just know I felt better after. Art is beautiful because it's in the eye of the beholder, everyone who looks at the same painting will think it means something else. For some reason or another I happened across this page and I'm really glad I did because then I happened to also come across this video, you should watch right now.
I found the guy very curious as he goes about the video and in the beginning of it I think he's making a point about history repeating itself, and then in the middle he makes me very sad, thinking of where we are at and close to the end I'm highly entertained by the preposterous thing people are saying to questions he asks them. And when it's over I'm just glad I watched it. Then I went back to the page I had come across which is a tumblr that I also liked.
It feels like I've been at that place where it matters the most, and sometimes I'm just not sure if I'm sinking or swimming. That reminds me of this book I read a very long time ago in almost as good as a different life, it was called "Reviving Orphelia" by Mary Pipher a clinical psychologist who worked with troubled teenage girls, she's always been a bit of a hero of mine. I should read read that book. I'm not sure I write for others as much as I just wish to clarify my thinking in a way that can also help others clarify theirs. It would be a wonderful thing to believe in yourself when it's hard to believe in yourself. I'm not sure I'm quite there yet..but is anyone really? I mean if our thoughts were broadcasted on a radio frequency anyone could listen to would we be ashamed? It's easy to reflect on others and give advice or criticism, yet when it comes to us deep down, we don't really enjoy reflecting on us or our weaknesses because what if we find something we have to deal with. It would be hard then, hard to push through or face. What would people hear you thinking? are you lying out-loud about yourself? or others?
In chapel a guy at school spoke about faith and trusting God and how it's easy to trust him when every things going good but it's hard to trust him or have faith in him when we don't know what's going on, at least thats what I got out of it. Afterward people were called to the front to deal with their pride, or have a time to pray. And it was a good time to have with God, there was people praying aloud, speaking in tongues, others praying something out of someone, and others singing. And after this week beginning at a practicum with rehabilitating young girls who were acting.. to put it nicely chaotically screaming, and then to end in this chapel with this unusual stuff going on (this isn't to say that anything about it was wrong) I realized I felt nothing but calm. These things didn't scare me, shock me, or throw me off...they were just happened around me and I was calm in each circumstance. While the screaming at the beginning of the week was going on I just wanted to help, I saw these girls as being somewhere scary and new and could understand their screaming and confusion. I saw the staff tired and frustrated and I understood that in their position it was frustrating to deal with consistently, and in chapel I saw people coming and meeting God where they were at and that's awesome. And, I'm finding myself surprised by the fact that not a lot surprised me maybe it's because all I've seen or just what I'm going through inside.
A guest speaker that I highly admire came to our counselling class and talked about his career in the crisis field and how it's began and gone for him. It was highly encouraging to hear as at one point he stated that after everything you've been taught, you have all this training but when you go into a situation it’s like “wow, never seen anything this bad” “what do I do?" When I enter into a situation as I did this week I feel inadequate, acutely aware that I don't know what to do, yet thinking back to what he had said made me feel comfort in the uncomfortable.
Oh after eights! your oh so tasty, must I eat you after eight? squares, or sticks I don't care what form you come in, as long as it ends in me eating you!
Monday the 12th, I had decided that I would not put up my christmas decorations because even though its my favourite time of year it would remind me how fast my final exams were coming. However, I only held out till that wednesday when a friend commented that I didn't do my regular decorating yet...and that was all it took...I realized how silly I was, as not decorating sadly does not freeze time just my view on reality. You see even if I didn't decorate, exams would still come just as fast. So the next day I decorated with ornaments, stockings, a reindeer and two mini trees, but still I was missing having a big tree so I came up with a tree that can fit in small apartments, and anywhere theres a bookshelf!
And last Monday the 19th, I had just finished a 10 page paper thats 40% of my grade and when I went to get it printed my mac laptop went black. I couldn't find it anywhere, not in the computers trash can, not in any file hiding places I could think of, so my husband and I took it too the Mac store thinking Apple will know how to fix it!...the tech guy said that part of my problem was that I was using word and the other was not backing it up...neither answers helped at the time of. When asked if he could fix it, he said that it would cost 200$, would take a week and no guarantee that it would work...there goes three weeks of researcher, and the essay. The stress probably took a year off my life...lol. In the end we bought an online 80$ program called R-Studio that my husband found, which took a few hours to run and after looking through hundreds of files, recovered it! After that incident I backed it up to the google drive app online. Thus, I could continue on with life and not have to back track.
This stress compressed onto this weeks busy and tiring schedule, however I did the best I could with what energy I've had. Monday (26th) I was able to get to class and take notes, tuesday I was able to clean the house and make dinner, and today wednesday, I gave a presentation to go with my second research paper. Now, I'm exhausted and the weeks not over. From tomorrow I have a week and a few days till my first final exam and I'm praying I do well in studying. But, right now I feel O so sore and pleading with my body to be okay, just be okay. I plead with my brain to fix the body its the CEO of..
The truth is, I've been keeping a deep secret I refuse to say out-loud, cause that would make it real, and I'm not ready for that again. The truth is I've been getting random brutal stabbing pains in my sides that take my breathe away, and they send this nightmire throughout my body as I feel as though my biggest fear is creeping in on me. It's been a good few weeks without them for the first time in four years and I'm scared because I remember that pain all to well. And in the name of being honest I'd like to be my old self again and I'm still trying to find my way back there. It's weird I was there and the hospital rooms, the ER, the pain, the pain, and the horrible feelings of hopelessness it was all real.. and I remember it all too well. I plead with my mind and body from the depth of my soul don't take me back there when I'm just starting to see past the fog of these years. And I know it's not long gone, and the pain is still here but oh I starting to see through the pollution of pain and I started to hope again. May be I was too wide eyed and naive but I can still picture it the feeling of calm in my bones and the clear sky to focus my mind without all the noise. The volume of the pain was turned down for these few weeks and Id do anything not to go back. O lord have mercy don't let me go back. I was as strong as I could be but I'm tired and just want to rest, I just need to rest now.
~ElysiaB
Earlier last week I tried desperately to make gluten-free cinnamon loaf, gluten-free bread, and gluten-free holiday sugar cookies all of which failed miserably. I used to love to bake as I felt accomplished in that I could still prove to others I could do something well. Yet, of all my failures the sugar cookies really crushed me as they're my favourite during this season and on a bad day they're sweet n don't hurt me.
On another note, thursday I had to go into a hospital for a colonoscopy, and so today will be a good day as it would have to take a severely drastic turn to be remotely worse than yesterday. However uncomfortable it is to be in a roomful of gassy strangers it was nothing compared to the sedative taking effect slower than usual as they had a hard time placing an IV. All of which making it possible for me to see my insides on the screen. I thought going in I hope they use the IV to knock me out cause the gas was gross for the endoscopy. I immediately regretted that hopeful idea, not that I had a choice in it.
You arrive nervous and fearful because well who wants to go through this? Only desperate people like me. So theres a large waiting area with a pretty painting and I'm waiting with my mom as 12:30 passes and I go check that they haven't missed me. Only to find out that the nurse has been calling the wrong person accidentally. So once I have a gown on and am told to wait at the nurses station, and as I sit I meet a nice elderly Italian women who had flown out from edmonton to get the same procedure done. I wondered why she couldn't have it done out there but it's hard to understand her through her broken english, yet she is kind and says that I am too young to be in a room like this. I agree, and as she leaves, I watch the other patients waking up from procedures and a chatty man talking to a groggy women. I think to myself, I hope no one talks to me after it's uncomfortable and awkward enough and in pain, not only do I not know what to say but I also know I will not have the strength to pretend to be fine and normal to talk to.
I am brought into the IV room, in the first chairs there is a bald man with a handle bar moustache, he looks like he's in a biker gang. After the nurse is done with him she makes three painfully unsuccessful attempts at placing an IV in my arm. The other nurse that has come to take me to the procedure room gets antsy and causes the nurse placing the IV to feel pressured. The fourth try fails, but the fifth is very very painful as my veins are small, the other nurse is pleased and takes the sedative bag with her while she directs me into a room and onto a bed. The sedative is hooked up to my IV but as they begin it has not taken effect soon enough and I can see the screen that shows the camera and it's showing something similar to those gross pictures on medical websites. I see something weird and asked the doctor what it was and coincidentally the nurse goes to my IV bag and I wake in a recovery room full of gassy strangers.
A 24 year old girl lays in a bed to my right and says how she wishes they gassed her cause she didn't want to see that. I laugh as I roll over and agree I never wanted to see my insides either. We talk about our symptoms and they're the same except that she has chron's and I have who-know's what, to add to my list. She's young like me, she talks of the struggles so similar to mine and I am glad that someone is there to talk to as I wake up. I don't have to act normal, or anything different from how awful I feel because she's just like me. It was refreshing to talk to her and I wished I wasn't discharged so fast n had more time to talk or at least keep in touch. The women to my left was just 28 years old with her husband and he says she has colon cancer. He tells me that she was diagnosed to late because doctors refused to test her for cancer claiming she was too young. It's true she is too young but now she has had to go in for an operation on friday and he tells the nurses that as great as they are he will be happy to not see them again.
Talking with these women who are so similar to me was the first time in a long time that I felt normal again. Which made me realize just how much effort and energy I put into trying to be normal. As well as the first time in a long time that I felt like someone actually did understand how exhausting it is to try and be normal when everything about me feels anything but normal. I left in pain from the procedure which even days later hurts but mostly I left feeling a little relieved because someone understood. It makes me realize how much as humans we need to feel understood and how much kind words can do. Talking with people who go through the same thing and use words like "us" n "we" causes me to remember what it was like to have friends and feel normal I haven't felt included like that in a long time. Too often I've just felt like a guinea pig to doctors and less like a person. "Nobody realizes that some people expend tremendous energy merely to be normal." -- Albert Camus These words are all too true as I feel exhausted after going to school, or gatherings as I have spent tremendous energy trying to be normal. Which tomorrow I will wake up and do all over again, but I now have something to hold onto, the knowledge that I am understood by those rare people. “Kind words can be short and easy to speak, but their echoes are truly endless.” -- Mother Teresa. I guess it's been a long time since kind words, and understanding were extend my way and so this will echo. Now I am thankful for having met them, and sad to feel alone once again. But it's the little things to hold onto, as they can shine a tiny light to hold onto through all the rest of these foggy wanderings.
Tomorrow I will pull myself together, mustar up all my strength, paint on a smile, be optimistic, take my pills and go out to mingle in the world to try again. Yet, right now I will sit in uncontrolled pain, worn out emotionally and physically, and exhausted from trying for so long, from bucking up and dealing with it for so long as there is no other option. Its hard and it sucks and for five minutes as I switch from writing this to pushing myself onward to write a paper I will allow myself to feel all that hurts, and then I will turn that tap off because I can't handle feeling that intensity that bubble below my surface. Allowing that tap of raw feelings to flow through me creates some form of control so that the tap can be turned off without bursting.
