When You Feel Like Nobody “Get’s It”

Note: I was going to write a post about all the updates since 2007, but this week happened. And I wrote this instead. 

Chronic pain is an interesting thing. You can feel it, oh boy you can feel it, but you can’t often explain it. At least, not to unwilling ears.

I’ve composed several Facebook statuses reading “someone, please come and walk the dog for me” that I’ve promptly deleted because I can just imagine the ‘advice’ I’ll get.

“Take the kids with you when you walk the dog! I do it all the time, it’s easy!” Well, yes. That does seem like the simple solution, doesn’t it? Trust me when I say I have, indeed, thought of that.

My dog weighs nearly 50 pounds. My toddler weighs about 25, maybe 30. My older son weighs the same. I only have a single stroller, which the toddler would have to sit in, because he is horrible at self preservation right now, and would likely laugh manically as he raced away from me onto the road. My older son tires easy, and his legs start to hurt after half a block, then he wants to get into the stroller too. He’ll try climbing into the basket, but it simply cannot support his weight.

Plus, when I bring the dog with us, I have to tie his leash to the stroller handle bars, wrap it around once and use my weight to keep him at bay. This is painful for me, and rather difficult. When he catches sight of another dog (which is always bound to happen), keeping him from taking off is incredibly difficult.

I have, indeed, done this before on more than one occasion. I’ve brought them all to the park. But after we return home, my pain triples and I am unable to do pretty much anything. Heck, that happens when I just take the kids to the park and don’t have to wrestle the 50 pound dog.

Right now, I can’t do that. I don’t have my regular evening help. On Tuesday afternoon, my husband was in an accident at work. He works at a scrap yard, and a dump track axel fell on him and pinned him to the ground. He tore every single muscle in his groin, has extreme soft tissue damage, and a small fracture on his pelvis. He is out for the count for at least a week or two.

Usually, my husband all but completely takes over when he gets home, because he knows how sore I am after a simple day “home” with the boys. He pretty much handles our younger, crazily energetic toddler while I put the older one to bed and snag a nice, hot shower. He will also get the toddler to bed, because our son adores playing the “up and down” game. He’ll claim he’s ready for bed, and once you get him up there, he’ll start crying and demand a bottle. He is relentless and does not stop screaming until you give in. (And yes, that is every bit as irritating and grating on the nerves as it sounds).

He is there to pick up the slack when I need a break, when my pain is too great. Except…he can’t right now. It’s just me, doing the work that we usually share. All day. Plus, I’m bringing him things that he needs, and I’m helping him.

So, I can’t walk the dog, I can’t take the kids with me, and I’m finding myself struggling to ask for help. I’m afraid that people will think I’m lazy (as they often do, because they don’t understand “chronic pain”).

The best way I can describe this to someone who doesn’t have a chronic pain disorder would be using the spoon theory. I need to save my spoons. This explanation typically works better than the “I have a chronic pain disorder” explanation, because most people really don’t understand chronic pain.

Still, a lot of people won’t get it unless they are forced to live with it or they see the affects of a chronic pain disorder for themselves.

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These Shoes

I know it’s been forever since I last updated, and I apologize. It’s summer time, and I tend to get lost in this season of freedom and relaxation. I have not been around to update you all on how my first doctors appointment went, and for this I am deeply sorry. I know you have been awaiting a response, and next time I fall off the face of the earth please feel free to email me and yell at me.

Anyways, the appointment ended up with me waiting for a surgery date – which I’m still waiting for. They are operating on my left ankle and left ring finger. Since having the appointment, other issues and concerns have come up; like the tumour on the underside of my left hip. It’s getting larger and causing more discomfort and pain. I’ve called my doctor and left a message about possibly including that in the operation, but unfortunately the lady behind the desk told me I would have to have an appointment with him so he could check it out. He can’t just add things to his list because he has other patients. It makes sense, I guess. So ya, I’m just waiting on a surgery date.

Other than the wait, not much has happened in my medical life. So I can get on to the “dirty” part of this post.

I received an email that someone had commented a post in my old MHE blog Bumpy Bones. Here is the comment they left (that I haven’t approved because I no longer log in to Bumpy Bones):

Author : anonymus
E-mail : nzundel@weber.edu
URL :
Comment:
-As a survivor of cancer, mulitiple surgeries, scars and lifetime effects of REAL medical conditions. . .All I can say is- get over yourself- Life is too short to get that worked up over a miniscule “reminder” that you are human- and life happens- Everyone had little odd things about them- and if attention to them brings you that much distress- you should be seeing a shrink=- not a surgeon! My praises to the surgeon that had enough perspective to tell you the truth in todays world of scalpel happy nuts.

Personally, I thought this to be very harsh so I decided to email this person a reply, only apparently the email they gave doesn’t exist, so I decided to post it here in case they still happen to be reading. Here is my reply:

Dear “Anonymous”;
In regards to the comment you left on my Bumpy Bones Website, I would just like to take the time to say that while I do respect you for being a cancer survivor, but would like to remind you that there are other people in the world who go through medical conditions every day for all of their lives. My MHE is something that I have to live with every day of my life, and there is no beating it. Before you wrote that comment, you should have looked into my medical condition; all of my bone tumours are inactive cancer, they can become active at any given moment. Consider I have these growths ALL OVER MY BODY, that makes my risk higher than people who don’t have this disorder. All of my scars have a great risk of getting skin cancer, which is why I wanted to get the bigger ones removed. I did NOT want my scars removed for purely cosmetic reasons, which is why I took offence to the doctors words. I merely wanted them removed to lessen the risk of cancer and because a lot of those scars cause pain.
My medical conditions are just as REAL as yours were, and I find it extremely rude of you to accuse me of other wise. You of all people should realize that you can NEVER see how hard a person has it or doesn’t have it until you’ve walked a mile in their shoes. You haven’t walked a mile in mind, so please keep your petty comments to yourself. Yes, I do have some body issues but I do not need a shrink to tell me that, I’m fully aware it could be worse and I don’t sulk about my medical issues. I live with them them. I battle the depression that walks hand in hand with having a chronic illness.
I hope you feel good about yourself for this comment, I hope you got out all your angst in this comment.
Truthfully, I was and am upset about this anonymous person’s comment. I know I shouldn’t let one person’s opinion bother me, but it hurts that most people think that just because your disorder/illness doesn’t have a gigantic charity or a ribbon, it makes it less real than say cancer. My MHE may not have a gigantic, world known charity to raise awareness and money for research, and nor does it have a ribbon (at least as far as I know), but that doesn’t mean my medical condition is any less real than anyone else’s. It’s chronic, it causes a lot of pain and other conditions, and its a part of my life. No, it does not define me, but it is a part of me.
So, anonymous commenter…I hope you read my response to your comment and I hope in the future you think twice before saying something like that to someone else.

Back to Square One

Now originally I had a lot to discuss in this post, however this page has literally taken 10 minutes to load and my back is already killing me. I don’t think I can make it as long as I had intended to, so we have dialup to thank for that! One day I will get high speed, one day. I don’t understand why they don’t just make high speed for rural areas in Canada. I know Bell has it available for the States. How hard is it to make it available for rural areas in Canada if it’s already available in the rural areas of the States?

Anyways, I’m rambling. I tend to do that when I’m sore…so yes, I ramble a lot. But anywho, I’m back to square one with the whole educational pursuit. Originally I had accepted the offer into the local community college for the Child and Youth Worker program. However I recently realized that although I would make a good, attentive Child and Youth Worker, I don’t have that mental strength that is required when being a Child and Youth Worker to put a line between work and home. When working with troubled children and youth, there is a risk that you might not always be able to help someone. Or their cases and situations are far too horrible. I definitely am not the kind of person who can leave that sort of thing in the office, I would surely bring everything home with me and that would definitely reek havoc on my family life and even mental health.

So now what? Well I’ve always wanted to do Journalism. It’s no surprise that I’m deeply passionate about writing (or at least I hope it’s no surprise!) and everything about the Journalism program appealed to me. Everything. There wasn’t one thing that I didn’t like! My dream job has always been to be a well known and well published writer, and I have several plot books and started novels to prove it!

Unfortunately, Journalism is now wait-listed. I’m now on the wait-list, and the Admissions Officer assured me that it had only recently been wait-listed, which means that there should only be a small handful of people on the list.

If I don’t get in to Journalism in September, then I do have a backup. I’ve applied for the February start of Office Administration, the same course that my sister Kate took. That job definitely leads to other branches that I could go in to, and there is money there. Although it wouldn’t be the job of my dreams it would still be something I wouldn’t despise doing.

So now all I can do is wait, and kick myself for being so indecisive and not knowing what I want and who I was earlier. I could have already accepted the Journalism offer and not be on the wait-list. Now I just have to wait and see, and keep my fingers crossed.

I’m still jobless; and haven’t even gotten a call back for any of the resumes I sent out 😦 it definitely kicks ya in the ego. I used to think I had an impressive resume! Now I guess it turns out I don’t really 😦

And in unrelated news, Matt’s birthday was yesterday and he said he had a blast. His mom took us both out for lunch at Kelsey’s, and it was pretty good. He loved his shoes that I bought him (and refuses them to wear them since they have more white than his last pair) and the little birthday dinner/cake party we throw for him also made his day. He got two cakes!! Yum. Lucky boy! Now my birthday is next; 11 more days! Then I will be 19! I’m looking forward to that, and to my weekend in London with my cousins and Matt. That should be fun too!

Unfortunately my back is aching something fierce so I’m going to go to bed early tonight since I left the really awesome back stuff Gordon gave me at Matt’s house 😦 I wanted Matt and Colleen to try it, because it definitely helped my muscles relax. I forget what it’s called; it’s sort of like Rub A535, but better…way better.

Hopefully the back pain medication my mom found will work tonight so I can get some sleep!

On The Hunt – Again

So during my last post – X-Rays and E-mails – I meant to talk about my doctors appointment and a really nice email I had received about my blog, however I got distracted by visitors and forget to mention the really nice email that really did make my day! In this email, I was told that my blog was very informative and that the person learned a lot about MHE just by reading it (among other things). This honestly perked me up a lot. It’s no secret that I haven’t exactly been feeling 100% myself. It surprised me just how much words like that could bring up my spirit. I tend to look at my own blog a wee bit more critically than I should, but its nice to know that I’m helping educate people 🙂

Today is my boyfriend’s birthday, so I’ll be busy all day hanging out with him. I’m going to cook him dinner and bake him a cake. I’m hoping to make his birthday special because his past birthday’s haven’t exactly been special. So today it will be all about him 🙂

My doctors office called me today with the appointment for the pre-op stuff. I have to fill out a bunch of forms and meet with the anesthesiologist. Matt is planning on coming with me. It’s very important to me that whoever I’m with isn’t terrified or intimidated by doctors appointments, and Matt definitely isn’t. He’s definitely a keeper; you can tell by the way he wants to know what we’re up against. Not to mention, in times of crisis he doesn’t run away. He’s there for me, giving the comfort of hugs and wise words. He’s also there for my family, which I have never seen in a guy I’ve dated before. Anyways, that doctors appointment is going to take place on June 16th – the day after my birthday. I guess I won’t be enjoying turning 19 on Sunday night. Heh. Oh well, I have the rest of my life to go to bars!

I also have to really get started on job hunting. I put in an application to a local retail store at the pathetically small mall in town, but haven’t heard back from them yet. Granted, I handed in my resume on the Friday. I’m keeping my fingers crossed that I get the job. I really need the money. Too bad now a days all the desk jobs require a degree of some sort of administrative program in college 😦 this makes getting a job very difficult!

Another Chance

I finally called my new doctor and booked an appointment for May 27th. I figured since he hadn’t made the initiative to set up another checkup appointment when I saw him for the first time in August last year, I might as well do it. He had probably long ago forgotten about me.

With MHE, it’s important to keep having yearly check ups to keep an eye on everything since sometimes the tumors can become cancerous, which is why even after you have finished growing your doctors want you to continue to have yearly checkups.

I have a list of demands to be meet this time around, and hopefully I’ll be able to get something out of this new doctor…since when I met him last year he seemed very nonchalant. Anyways, here goes the list:

  • I want to get my hips checked out since they keep locking/poping/dislocating or something, and it’s quite painful. I want to see if the joints are wearing out or something, and if there is anything to do to prevent that from happening.
  • I want him to check out my ankles; as they too lock up a lot and I’m worried they might be starting to fuse.
  • I want to discuss possibly resetting my ankles. They aren’t in alignment with my knees and I once had an OT warn me that if I didn’t get that fixed, my feet and ankles would collapse. That doesn’t sound like fun to me.

The reason why I usually hold back on talking to anybody about my aches and pains really is because I don’t want to sound like a complainer, because that’s not what I’m intending to do. But I am starting to realize that the longer I keep quiet about things, the worse it ends up being for me in the end…like in grade 8 when I didn’t tell anybody about the tumor in my right leg that was causing me a lot of pain. It ended up cutting off the nerves and I almost loss the use of that leg. Things like that happen to me with silence, so I don’t want to be quiet anymore.

I’ve had some doctors act as if when I told them what wasn’t right that I was simply complaining, so next time this happens I will tell them off. Not rudely or anything, but firmly…should it not be my right to get the medical attention I feel I need in order to make things easier? I think that if my ankles and hips were all fixed, I’d enjoy walking more. I could get more active…maybe start horse back riding or hiking or something.

I want to be more active. I’m sick of discreetly babying myself by hiding behind the “I’m too lazy to go with you guys for that walk” excuse when really I just know that I’ll end up paying for it later. I’m not a lazy person, I just don’t have the energy to deal with more pain that a simple 15 minute walk can bring.

It’s Been a While

I know, I know…I’ve been missing in action for another month. I apologize for that, I just got caught up in life and attempted to hang out more with the people in my life instead of hiding out back home. WordPress has been insanely slow too, so whenever I have a quick minute to update, I end up not being able to because the pages take so long to loud. Luckily today, I’m not doing anything until 6pm (I finally start Drivers Ed today!).

So a whole whack load of stuff has happened since I last updated. My oldest sister, Shannon, got married this Saturday. The wedding ceremony was beautiful. She looked absolutely stunning in her wedding gown; all the little girls were convinced she was a fairy princess!

I had a lot of fun being a bridesmaid, although my heels did kill my feet within 20 minutes of putting them on. Such is life though, heels kill everyone’s feet, just mine more so. Matt helped film the wedding, and got hilarious footage of one of my dad’s friends, Brian, and I swing dancing. Brian is a pretty big guy, so it really was hilarious to watch!

Anyways, it was an awesome, fun night. I’m still paying for it today though, and for Friday night’s affairs. All of the bridesmaids, my mom, and one of Shannon’s friends from England spent Friday night at Shannon’s. We made the seating arrangements for the reception and then goofed off. While bringing air mattresses downstairs for our sleepover party, we all thought it would be an awesome idea to go down the stairs on the air mattress. I went by myself, and being so light I caught a lot of air and landed hard on my tailbone. Now, sitting down, lying down, and walking kills. I think I may have bruised it or something, it’s definitely swollen. Well, that’s my own fault I suppose!

I called my doctor today, the new one. I didn’t get anybody, so I left a message asking to book a checkup appointment sometime in the near future. I left my name and number, and I’m hoping they’ll call me back. I still don’t know if I like this doctor. He was very nonchalant about every concern I had, and we waited such a long time just to have all my concerns and questions brushed away.

I’m going to give him one more chance though, and if I still dislike how he handles things (or rather, doesn’t handle things) then I am going to call my old doctor and see if he can get me in with someone better. I want a doctor who is going to actually take my concerns into consideration and DO something about my aches and pains, not brush off everything.

Back from hiding

It’s shameful, the amount of time it’s been since I last updated this blog…but I really didn’t have anything new to say. No recent hospital trips, no recent major dramatic changes in my “medical” life. I’m still jobless; finding work has been a lot more of a challenge then I expected, and now it’s pointless because in May I will be working at the recreational group for the developmentally handicapped. No point in getting a job for just two months or so, now is there?

There has been a lot of changes in my life recently I guess. I’ve been keeping busy hanging out with my friends and my older sister, Shannon. Two weekends ago was her Jack and Jill, and it went spectacularly! Next on the to do list is the bridal shower: which is next weekend, on the 22nd. Granny is going to teach us how to make fancy sandwiches and throw an elegant party.

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Now I spoke of changes: a couple of them are rather insignificant. For instance, I gave myself a haircut and got my lip pierced (excuse the horrible picture, but I don’t feel like taking another one…heh). I like the lip piercing; it was my treat to myself on Valentine’s Day, since I knew I wouldn’t be getting anything from anybody. Why not? The bangs were just a day of boredom…and I sort of regret them because they get in my eyes.

niice.jpg

Now the most recent change in my life is Matt. I meet him nearly a month ago at a party at my older sister’s house. He is a really sweet guy, and we definitely have a connection. It’s weird, but the good kind of weird. The wow I’m really excited to see where this will go kind of weird. He’s very much suited to everything that I need and we share the same views on a lot of things.

So those are the changes in my life, and here is what still hasn’t changed: I still am confused about the future. I’ve been accepted to both the Child and Youth worker program and the Journalism and Print program. I have until May to decide.

On the one hand, I love writing. It’s been my passion since I was very very small. But then, Journalism isn’t exactly a concrete career. And I do love working with people, so I know that I would be good at Child and Youth work.

Sigh. I don’t have a lot of time to decide either. In the end, I’ll probably end up going with Child and Youth work because it is stable.