if you can't handle the truth don't read this

Life continues around me and my head is beginning to hurt from all the constant swirling changes. which is partly why I haven't posted in a little bit. I just don't want to think about everything that's going on. But I also can't avoid it and that is all to evident as life continues on wether I want it to or not. On the 6th it was my husbands birthday and I couldn't afford to get him anything, which made me really sad. But a few people called to wish him well and we went in to vancouver for a nice dinner with his dad and then today we went out with his mom for his birthday. Something just seemed off this year though as the celebration did not nearly compare to other birthdays in the past it was rather on the lacking side. Which I wish I could have done something about but it was out of my hands. However following this on to the 8th our car met its untimely doom. As it was wandering along attempting to do a good deed and a manhole cover popped out of nowhere and smoked the front frame of the car. The poor car was so embarrassed as it had just had the airbags scared out of it. So, needless to say life has become more interesting and challenging, for us to try and figure out life without a car. And then also to figure out how much money that we will go in debt further to get another car as the ICBC guy called to say the engine collapsed, and hopefully he'll tell us soon how much they'll give us for it. Which has made me come to the realization that it will be weeks before we can find a car. Which has further caused me to worry about getting to my first classes, but mainly getting to my ubber important appointment with the pain specialist last week. As well as up coming appointments and classes. My aunt and uncle were overly generous in letting us borrow their extra car and I can't say enough how much that has helped us, not only in getting around but mainly in worry over how I would get around.

The lack of a car has proved us with an interesting learning experience to see how people respond to seeing others in need of help. Some upon hearing are compassionate and jump in, some hear and are almost glad and then proceed to talk about how amazing they are doing and still some just have a tough love approach that makes you feel guilty for mentioning it. I've learnt from these that compassion and understanding is rare, and that is what I would most like to emulate in the future when I see someone else in need. It is not helpful to tell someone who has just shared their loss with you to proceed about your good fortune as it leaves them feeling worse about their hardship. Just as it does not help to take the tough love approach for the same reasons. We get that life is not supposed to be easy and that everyone struggles so there is no need to be tough on us for it. Tough love is an approach that is only appropriate in few circumstances, and I think although people hopefully mean well when they take that a approach I would caution that you first look to see if it is necessary. As well even if you are not up to helping, you can help by being understanding which has been a very rare thing. These days it seems people are quick to judge and slow to feel empathy, which at times is rather hurtful as I feel it was un-necessary. In these moments I am not so bold as to say anything as I do not want start something I do not have the energy for, and I realize to that saying something about it would be out of character for my nature I do not like conflict and would rather ignore the insult than deal with it. I guess I'm just realizing that with the lack of energy its not about picking your battles as much as it is choosing what is worth all the energy of taking a stance, arguing about it, going through everything just to get to reconciling..I don't have the energy for it at all. So, I let it go even if it really hurts or bothers me as it will hurt more to  go through what it would take to mention it. Since I have been sick I have notice this as a large change in my nature. Not to say that I was big on arguing but I was big on standing up for myself, where as now I recoil from the circumstances that would put me in those situations in the first place. With an autoimmune disorder thats triggered by stress, I notice that dealing with issues causes me to be physically sick for weeks and its just not worth the decrease in health even to have other understand how they hurt you, I'd prefer to try and get past it on my own to save energy and injury. This could also be effected by the intense pain I feel regularly enough that tears flow far to easily now as it takes a lot to be in this physical pain and not cry that emotional pain hurts the tip of an iceberg. But, then again I don't like conflict in the first place and don't have the energy to play head games, thus if passive aggressive behaviours get to me, I'm inclined to just decrease my attendances with those people to save pain, which I must admit causes some loneliness at times.

My body just can't handle much, as is it feels like everything I eat not only upsets it but reacts in a thunder storm of pain in my stomach and intestines all the way out in which case it either comes up which is less pain or otherwise exits in an untimely, and extremely painful process. When I went to see the pain specialist after a year and a half of waiting, (man that's just wrong to wait so long) the Dr. told me that I have one of three types of fibermyalgia, for which he has put me on Lyrica which is a strong pain medication. I have yet to notice a difference but it's only been five days, and some drugs take awhile to notice. He also put me on Dicetel to help with the incredible intestinal thunderstorms I have, although a few days after I saw him, I saw a gastroenterologist who I have waited longer to see and he said that the thunderstorms could be cause by Chrohn's which would explain the high ANA tests, for which he said Dicetel would be used to treat. The pain specialist also said that he wants me to go see a neurofeedback specialists, dietician, and another Dr. whom he works with that will inject my back with a type of anesthetic to help ease the intensity of the pain to which I am feeling right now. I pray so often that God would take the pain away and now I pray that he'll just help me through today as right now the pain is far far too much to bear, and pain disorders magnify the feeling of few understanding and even fewer being around as it's hard to build friendships when pain breads isolation. I am sorry this is not a happier post, it's just raw life right now, and the truth is it hurts unimaginably.

~ElysiaB
 

Vacation from me

There is a time for everything, a time to push past the pain and a time for recovering, a time for pushing through and a time for relaxing. When exercising you may start to feel a bit of a burn, but thats nothing compared to the burn and soreness that floods a few minutes after you stop exercising. Similarly when studying for exams you push through the stress and exhaustion, and then finally get sick when you rest. That is a very minor comparison to how I feel today, as I have just gotten back from a wonderful vacation. Although health wise, I am now in bed with shooting electric pains through all my joints, accompanied by fiery throbbing in all my muscles, and many many intense stomach and back pains. This is the price I pay for pushing my body harder than it can take. All the while the week leading up to the trip I had a UTI and a lymph node infection, that I took antibiotics for. Although I continued to have a lot of pain during the trip I refused to go to a Dr. as it doesn't make sense when they don't know my history and I do have an appointment coming up next wednesday with the pain specialist I've been waiting a year plus to see. So I am still attempting to hold out until next wednesday regardless of the pain as I know this specialist may understand, may send me to other specialists faster, and will all around be better than seeing any other Dr. that doesn't know my history, symptoms, or the pain of it all. But mostly, I just have an all around lack of faith in the average Dr. as they have hardly proven to be reliable, along with their offices that set up appointments but handout the wrong date or other information. Seems everything gets muddled, and sad when I go to see them so I don't unless I absolutely have to, in which case I'd still prefer to let it get worse in hopes of revealing the real source of the pain. I'd almost rather handle the pain of letting the symptoms worsen then go to see an average Dr. that doesn't have a clue what he's looking at and assumes it's nothing. At least letting it worsen comes with perks of getting fast tests done, and pain medication, I just don't have time to waste talking to a Dr. that won't believe me. Thus the vacation was a great time to relax along the water and that was much needed.

First we went to Vancouver Island and went camping, biking and walking all over Victoria. Next we went to Salt Spring Island and stayed in a small cottage on St. Mary's Lake, where we lounged inside reading, playing games, had a fire outside and even went kayaking. To finish it off we continued on to the family cabin on the coast and went for long walks and even an 8km hike. And it would be an understatement to say I'm feeling it now. However I am very proud of myself for pushing hard to do the things I wanted so badly to be able to do, as I haven't hiked or biked in a very long time and have never tried kayaking all by myself. There is so much of my life that is controlled by pain and I miss greatly the abilities I had before all this illness to enjoy the outdoors with all sorts of energy. So when I get the opportunity to go out and attempt to still enjoy the outdoors I have to take it for so much of my time is spent ill and sore. If it costs me a week in bed it is well worth it as I know I have pushed my body hard and done my very best. I wish I could do these kinds of activities a lot more regularly and if it were up to my mind I would, but sadly my body's wellness plays a large part in what I am capable of. For now I return to my studies, having registered for classes yesterday and already gotten ahead as I have gotten the notes ahead of time from other students and read part of a textbook.  I feel as though I am managing the non-pain areas of life a bit better for the first time since my gallbladder was removed. In a way it was a vacation from me, as when I am pushing my body to it's limit's and some, I feel like the fun person I was with a bit less energy, but just as happy as I was being outside and enjoying life.

~ElysiaB

A side note

On the ferry to salt spring island I was sitting in the car as the ferry backed out of the dock. The only way I could tell we were backing out was the point of reference I could see just barely through the rows of cars, I watched another ferry still docked. Once it was out of sight I no longer had a reference point to know which way we were turning, although I could feel the powerful boat moving I had no clue which way. It reminds me of pain, I reference a time when I had no pain and by remembering that I know which way my pains are heading, better, or worse, something I've felt or something I haven't. When storms come sometimes I forget what my point of reference is and it seems troubling to know if this is a worse pain then my normal pain, if it's worth mentioning or like my gallbladder if it's a lot more of a red flag then I think. It's hard to know when the pain's consistently inconsistent. The same goes for faith it's sometimes requires a Leap into the unknown or holding onto hope when you don't know if life will get better you try to find a point of reference to give you strength in knowing what direction your headed. For myself I need to remember not my past faith but my faiths past as a reference point. Meaning that when I don't know where I'm going I need to remember the captain does and god does and I couldn't drive this ferry.