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.

Hi and Hello!

It’s been six whole years since I’ve been to this blog to update. I apologize. Life got super busy for me, but I’m coming back and hope to be posting here at least semi-regularly, with updates on my book! That’s right, I’m writing a book. A memoir, to be exact, about growing up with MHE! I hope you’ll read it!

A couple other exciting things that have happened in my six year absence that will surely be focal topics around here:

• I am now married to a handsome man named Matt.
• I am now a mother to two beautiful little boys, Nolan and Archer. Both of them inherited MHE from me (I will post more about that later).

Do you have any questions for me? Fire away! 

 

Avoiding Bloody Situations

My appointment yesterday with the hematology department at the hospital went well. They didn’t even have to prick me! Basically, they just asked me a bunch of questions and introduced themselves, since they would be administering the medicine that I take before each and every surgery to avoid bleeding issues. My first ever surgery didn’t go as my doctors had anticipated, and I started bleeding from the bone of the surgery site. They had to cut me open again to drain the bleeding, and before I was able to go home they had to stitch me back up.

They never could find a reason for my bones bleeding. Numerous tests showed that I didn’t have any of the major common bleeding disorders, so they assumed it was a result of my MHE and as a precaution I would be administered DDAVP before each surgery to avoid “bloody situations”.

My new “blood team” suggested I take a trip to another town and hospital for them to do a bunch of other tests to see if they can actually diagnose my bleeding problem – which, as of right now, is referred to as my bleeding problem. The head of the hematology department said that she would probably find what causes my bleeding problem because they actually have a very good, huge blood lab. So I’m thinking I might do that, just because it would probably be a good thing to know. Or interesting to find out, at least.

After we met with the “blood team”, we headed over to my hospital (which is actually across the street) to see if we could meet with my doctor (whom we shall refer to as Dr. Wonder), or at least his secretary. But I guess that his secretary was out for lunch or something. In any case, I didn’t get to meet with him – or anybody really. We had my handicapped parking forms with us so he could fill out the information to renew it since it expires on the 31st, but I guess I have to wait for my surgery for that.

It sort of frustrates me that I’ve yet to actually meet with Dr. Wonder about this whole surgery business. I mean, I met him once. I’ve spoken with him once. The appointment I had a couple months ago was with one of his teammates. I was sort of put out that Dr. Wonder didn’t even come in to talk to me about the surgery, since, well, he’s going to be the one operating on me. Did I mention it’s my first surgery with this hospital and with this team? Excuse me if I’m feeling a tad bit nervous about it, and truthfully I’m missing my childhood team. Course they’ve been with me from the get go and my old doctors bedside manor was beyond amazing, he was definitely a rare doctor.

I don’t yet have an opinion about Dr. Wonder. I mean I hear he’s the best in the area, and my old doctor really wouldn’t have referred me to anyone less than that…but it would be nice to have an actual conversation with the guy before I go under the knife, ya know? And I was really hoping I could talk to him about adding that one bone growth on my left hip into the mix…

Today I actually went to get an ultrasound and x-ray of that bone growth. I was hoping that if I could get the ball rolling, Dr. Wonder might be able to add that to the surgery list after seeing the results [if it causes alarm that is]. But actually, this is one of the more painful bone growths at this time (along with the ankle bone growth they are already planning on removing). I guess it’s just causing me a lot of pain because it’s in the most inconvenient of places and it makes sitting and laying down on my left side and back more difficult, uncomfortable, and painful than it should be.

I’ll try calling the office on Monday again.

“Authors” Note: I apologize for not giving out much information and therefore making this post sound a little bit on the boring side but I’m not comfortable with giving out location/name information. I hope you all understand!

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.

Differences

I had a conversation today with someone that sort of hurt my feelings/got me thinking. They asked why I hadn’t found a job yet, and I explained that I stopped looking because I’ll be having a surgery soon and I think it’s pointless to start a job if I’m just going to have to take a leave of absence/quit it for the surgery.

They thought that I should look anyway, because I could get a couple weeks in at the new job. I still think it would be rude to get a job, tell them I’m unable to work because I’ll be having a surgery, and then have them have to hire someone else. That’s if they hire me in the first place. Most places won’t hire you if they know you won’t be able to work solidly because it’s too much of a hassle. When my sister was looking for a job she had to tell every potential employer that she was getting married and going on a honeymoon for a couple of weeks. The places didn’t hire her because what’s the point in hiring someone who can’t work?

But still, this person hurt my feelings. They said that another person had been chatting with them about my job situation, and that they agree that I should get a job and work anyway. I was miffed at this point, and told them to walk a day in my shoes and come back with what they discovered. Of course, this angered them and the conversation ended. I was trying to get them to see it from my point of view; places don’t hire you unless they know you’ll be able to work the required term. Meaning if I was seeking summer full time employment, they would only hire me if I could work the entire summer full time. If I needed time off for a surgery, they wouldn’t hire me because they would just need to hire someone else to take over.

I find it difficult to explain myself to family and friends because I always feel like I’m just complaining by stating my opinion on things. Truthfully, I have been looking for a job and sending out resumes like crazy. Job Bank has been the top visited site by me in the last month. A lot of jobs require you to have transportation and I license – which I lack. This makes getting a job even more difficult. I was hoping the local retail store would hire me, but I haven’t heard back from them. I haven’t had much experience – or any actually – in retail. I have 2 years worth of experience in costumer service, but none in retail. This sort of puts a damper on applying at retail stores, who prefer it if you have retail experience.

So I’m stressed out about money, and about school. I still don’t have any clue what I’m going to do. I’m waiting to hear back about Office Admin, and I think the Journalism program I applied for and got accepted into has revoked their offer as I never replied back to them. Gah!

Anyways, I’m looking forward to next year. My pen pal, Mandy, and I are planning on actually getting together. I want to go visit her in her home town, because it’s apparently really nice there. I haven’t seen her since grade 7, so it would be nice to see her again.

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!

X-Rays and E-mails

I meant to update sooner then today, but I got caught up in some family matters and I actually was working for a few days. I had a 4 day job shakeboard dancing for a pizza place (shakeboard dancing is holding a promotional sign and dancing around), only by the end of the 2nd shift my back and legs were killing me. You’re supposed to dance the entire time…4 hours of dancing and holding a huge sign are not easy. I thought it would be…and the idea of making 14 bucks an hour was certainly appealing but I’m paying for it now. My friend had to take over for me…which sucks. I’m sort of bummed out that I couldn’t even do a four day job.

Anyways, now for the hospital visit update. I went on Tuesday with my mom and Matt…my boyfriend, who wanted to go. I expressed my concern for my ankles and hips, and the doctor sent me for x-rays. Apparently, I’ve been having such problems with my hips because there are several bone growths that act like stoppers and prevent my hips from being as flexible as most people’s hips are. Unfortunately, they can’t do anything about that because if they shave down the bone growths it will make both my hips weak and cause them to break.

My ankles have the same issue as well. They keep locking up because the inside bone of my legs (I forget the medical term; I’m sorry guys…I probably couldn’t spell it anyway) is shorter then the outside bone of my leg and the tumours around my ankles also act as stoppers. I guess that while although these things cause pain, they also support my joints because my ligaments are loose and stretchy.

However, I will be having a surgery at some point this summer. The bone tumour on my ankle that is growing more than any of the other bumps on my body is a cause for concern; and it might help the locking issue if it’s removed. It is safe for the doctors to remove that one. I’m also getting a small tumour removed from my left middle finger; so it’s just a minor surgery that’s only supposed to last about an hour and a half (if all goes well).

So that’s the doctors appointment in T.O. Monday I might have to go to the emergency room if this pain doesn’t let up and get my back x-rayed to see if I really did do something to the discs…since I never did that after the back injury I received last fall.

Lost Beauty

A single rose, wilting with death,
Once was beautiful,
With bright red petals, standing tall for all to see.
Now it wilts, the life gone, the beauty gone.
No one stops to admire the rose now,
No one wants to give it to their loved one now.
It’s an ugly dead thing, to be thrown out.
It has no significant value anymore.
One looking at it now would not have known,
That once, this rose caught the attention of many.
This symbol of love, the chosen flower of Valentine’s Day,
Now rotting away slowly in it’s vase.

I wrote this poem December 8th, 2004 for a school project – that’s like 4 years ago. I know it’s not very good or anything, but I like it. I’ve never really been a poet, any poems that I have written over the past years have either been for school or to help me over come things. I can’t find any of my other poems I’ve written, and I only found this one because I was cleaning my room and found the assignment it was for. For some reason, I kept this grade 10 assignment around and finding it today, I thought it would be interesting to share.

Only a couple more weeks to my [somewhat dreaded] doctor’s appointment. In the mean time I’m still job hunting and now I’m in the process of getting a car (and finishing my drivers ed in cars). The recreation group has unfortunately screwed me over, or rather G.A – the old Program Director – has after leaving suddenly and basically telling me to “stop talking to him” when I sent him an email asking what was going on. See I thought we were friends, so I was worried about one of my friends when they abruptly left their job at a critical time. Whatever though. Unfortunately this means that I now don’t have any letters of recommendation, and I also have to re-do the summer student interview. So a new job I am searching for! It’ll probably end up being a crappy fast food, retail or other such costumer service job…not at all what I wanted to do this summer, but I’ll take the paychecks.

What I’ve Done (& What I Will Do)

I have been keeping very busy the past couple of days, helping my boyfriend Matt and his boss Colleen with the tattoo shop that they will soon be opening. They recently obtained the space and we’ve been renovating it, knocking out walls to put in pipes for a sink and building walls to separate the main area from the two tattoo & piercing rooms. Next we’ll be puttying and taping the dry wall, then painting and putting in the flooring.

This weekend was also my mom’s birthday, so on Sunday the sister’s and I all cooked her dinner. Dinner was (like always) a hilarious event of awkward turtles (which is a hand gesture we make when someone does something that would be considered awkward…I would show you but I have dialup and to load a video of me making the gesture would take far to long) and laughter.

I’ve been told by my dad that I’m not to blog about anybody in the family anymore, which seriously puts a damper on some of the things I wanted to blog about today. I don’t mean to do it to be, well mean…I mostly blog about my family members in a venting way, or relating a funny experience or expressing my frustrations. But I can’t do that anymore, so I will try my hardest not to.

Only a couple more weeks until I go to the doctor. I’ve made a mental list of things I want to talk to him about, and I even wrote down the weird thing that happened to me last night. My left foot went ice cold and moving it was very hard. I don’t know why it did this, and I’m fearing that maybe it’s a result of pressure on the nerves…so I’ll have to bring that up too. My left ankle is a bit ridiculous in the sense that its so gigantic and it keeps locking up on me. That’s definitely no fun. I’m sort of looking forward to this visit now, I’ve been keeping my aches and pains to myself for a while now and it would be nice to explain to a doctor what’s going on with my bones. If he says I’m complaining, I will definitely [verbally] punch him in the face! I’m hoping I won’t have to though, and I’m hoping I’ll catch him on a good day.

I still haven’t heard back from the rec group, although my interview went somewhat well. I don’t think I even want to work there now, since the Program Director G.A is no longer the Program Director. I got a kazillion text messages last night from concerned and curious volunteers who wanted to know the reason for his sudden resignation. He won’t even be at the club night tonight, nor is he planning on saying goodbye. This isn’t like G.A, and I wasn’t expecting him to leave so quickly.

I’m thinking I might just wait until I get a license and then apply at Community Living. I won’t be getting my license until the end of June though, so that might be a bit of a stretch. Decisions decisions! I still have one more week to decide though…before I get the should-be expected phone call.

~*~*~

I’ve set myself up with a new email account so people can get a hold of me (if you want to that is); medical.mystery@yahoo.ca. I love getting emails from people just saying hi how’s it going, and it’s always cool hearing from other people who have chronic illnesses, or MHE.