Monday, February 21, 2011

Impatience and acceptance

I haven't posted a lot recently because all I can think about right now is my upcoming appointment (In case you couldn't already tell).  With that being the only thing I think about, and my posts are based on my thoughts, I didn't want to post repetitively about how impatient I am.  Okay, well, not more than twice.  Three times if you count this post because you have to know that I'm going to mention it.

I have been learning, very slowly at that, how to deal with my over abundance of time and complete lack of energy.  Now, that's not to say that I'm happy with the fact that I'm couch and/or bed bound most of the time.  This is not to say that I'm okay with the fact that I can't get up and do all of the things that I love to do.  I won't list them all again, as I'm pretty sure I've mentioned it before.  I am just beginning the transition into accepting the fact that I need to find new hobbies.  I need to find ways to keep me busy that require little to no energy, aside from facebook games. 

I have been thinking of things that I would like to do.  I have not followed through on those ideas yet, though.  I think a small part of me is still holding out hope that I will get diagnosed with something next week than can be cured (although that's very doubtful) or something that has a more effective treatment than what I have now (which is just about nothing). 

As I mentioned in a previous post, I have taken up cross stitching.  So far, I enjoy it.  It is something that I can do while lying down or sitting up.  I just completed my first project.  Well, half of it anyway.  I am creating bibs for a friend of mine who just had twins.  The first one is done and I have started on the second.  It is the only thing that has made me feel like I've accomplished something in the last year or more.  Granted, it's a very small accomplishment, but it's a start.  In case you're wondering, I'm pretty sure my friend won't see this.  She's a little busy with newborn twins and an 18 month old.

It has been so hard to go from an accomplished ER nurse, runner, wife, and mother to someone who can barely take care of herself.  I used to get compliments about anything from how good of a nurse I was to how awesome it is that I ran a half marathon.  Not only that, but I felt good about myself, without the acceptance of others.  Now, I feel so useless.  I don't get compliments or praise.  But there's a reason for that.  I don't ever do anything that deserves it.  I know that.  But the biggest problem is not that other people don't give me praise or boost my confidence.  It's that I don't feel like I deserve it.  I feel, as I said before, useless. 

That is why I am trying to find projects to do that would make me feel good when I complete them.  I don't need compliments or praise from others.  I need it from within myself.  And I don't have that right now.

When I am done with the cross stitching gift for my friend, I would like to make Christmas stockings for my family and I.  I have found some good cross stitching kits for stockings online.  However, I want to get all 4 at once so I can get similar ones that would look good together.  I don't want to take the chance that I'll buy a couple of them and when I want to buy the others, they have discontinued the ones I wanted.  The stockings are about $20 a piece and we don't have an extra $80-100 to spend on anything other than necessities right now.  So, hopefully, disability will go through and I can buy those stockings to give me something to do. (Probably for the next year or two at that.  They look time consuming!)

I have also decided that it would be fun to learn another language.  I "studied" Spanish in high school.  Studied is in parentheses because that was a very light term back then.  With all of the Spanish speaking people in the U.S. now, I thought it might come in handy.  I can still catch on to a very little bit when I'm listening.  However, when it comes to speaking Spanish, I am at about the same level as my four year old who learns all of her's from watching Dora the Explorer.  So I'm thinking maybe Dora is not the best teacher for me.  Once again, when money allows, I'm going to buy a program that I can do from home in order to learn Spanish.

So, I have successfully gotten this far without talking about how awful waiting is.  As of right now, I have 7 days, 16 hours, 54 minutes, and 45 seconds until my appointment with Dr. Shoffner.  I'm not impatient at all.  (note the sarcasm font I used there.)  I am so sick of waiting.  Oh great, now I'm singing the tune from Finding Nemo in my head, but with waiting in place of swimming.  I'm going to have that in my head for the next 2 hours. 

I have managed to write a post that is not completely about my impatience and waiting for my appt.  I think I better not press my luck and post again until after my appt.  I will post as soon as I have the energy after my trip.  We are flying to Atlanta and back in one day!  We will have to leave our house at about 5am and will not return until about 11:30pm.  It's going to take me a week to recover.  However, it will be WELL worth it if I get some answers while I'm down there.

I hope you are all well, or as well as you can be.  Until next time...

Thursday, February 10, 2011

Just keep waiting...

Just keep waiting, waiting, waiting... (sung to the tune of "just keep swimming" by Dory)

I'm going to go crazy! (more so, at least)

Wednesday, February 2, 2011

But you don't look sick...

I am so tired of having to try to explain myself to people.  My family, my friends, the doctors.  I am constantly trying to justify the things my husband and I do.  Money, health, raising my kids.  It seems like everyone has an opinion.  Obviously my health and money are on the top of the list.  With my health taking a large lead.

Doctors, other than Dr. Shoffner, don't believe how sick I am.  Much of my family says they understand, but they are so far from understanding.  I still hear things all the time that prove to me that they don't have a clue (many, but not all).  If my friends understand, they don't always show it.  I am so tired of having to validate my need for daily daycare for my 4 year-old daughter.  I am tired of having to validate my need for pain medications, bedrest, and help around the house. 

I have always been a very independent person.  It's not easy for me to ask for help, with anything.  However, I've had to do so over the last year.  A lot, in fact.  Some of the guilt I feel is self induced.  Some of it isn't.  There have been a few times in which we, my husband and I, have had to explain things we have done. And a couple of those times didn't go so well.  I'm tired of it.

If I could work, I would.  If I could take care of my kids by myself, I would. If we could pay bills without asking for help, we would.  If I could do laundry, cook, clean my house, take my daughter to and from soccer practice, go shopping (well, you get the point), I would! 

I don't like having to ask for help.  I hate it in fact.  If we could do everything on our own, without help from anyone, we would.  If nothing else, than just to avoid the feeling that I have to explain every move we make.

I AM sick.  I may not look sick, but I am sick. 

Below is an excerpt from 
The author says everything I'm thinking every day.  If you want to better understand how I feel, please read carefully.  If you want to read the full article, the link is above.

"I do love my life, but I hate alot of things lately.
I hate having a scribe write for me in class or having my hands hurt too much to type.
I hate popping pills, and having people ask me personal health questions that I don’t want to answer.
I hate that everyone thinks any time they talk to me is another opportunity to give unsolicited medical advice.
I hate living up to other people’s expectations of what a healthy person should be.
I hate living up to other people’s expectations of what being sick is.
I hate thinking about how or when I might die, because for me it might be a “when day” and not a “someday”.
I hate never feeling good enough, quick enough, pretty enough, or just “enough”.
I hate that I know my doctors better than I know my friends and some of my family.
I hate that no matter how hard people try, (or don’t try) They will never know the loneliness of being in a crowded room knowing you are the only one who tells time by pills, energy and spoons.
I hate people that are inconsiderate, and make plans without thinking of walking or come by unannounced when a phone call can help you so much.
I hate people who complain, “I need a nap”, “I need some caffeine, I have a headache”, “I have pms cramps”, or even better… “I have a cold… I am Ddddddyyyiing!”. These expressions need to be banned, because they do not adequately describe how you are feeling and they belittle what pain and sickness I may be feeling.
I hate having to defend that I am a good mother, wife, daughter, sister, or friend.
Most of all lately, I hate people who judge, and give me advice, or questioning stares of how I handle my diagnosis, or my life.
Basically I hate letting people see the effects of my disease. I don’t care if they know that I’m sick, I just don’t want them to have to see it, or deal with it."
-written by Christine Miserandino, ©

More of my favorite posts at

Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness

Handicap parking and my invisible illness

Confessions of an unapologetic high maintenance spoonie
(Of course, I'm not a "high maintenance spoonie" because I can't afford to be.  Otherwise I probably would be)

And of course there's the The Spoon Theory

It's a lot of reading, but if you are not a fellow "spoonie" and you want to understand what we go through or what we're thinking, it's worth it.