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

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