I had a rough day which I am not ready to go in to detail about just yet. All I can say is that I know my limitations, stated them and felt the consequences today. At first I was almost a little proud…standing up for myself. Being smart and saying I can’t do something because physically I really can’t. Yet it just came back to bite me in the ass and make me wish I had never stood up for myself. I know…I know…details later when it’s behind me. I’m much to sensitive about it tonight to write about it. All I can say is that it’s hard even when you know and voice your limitations….because I often wish they weren’t my limitations. I do not wish to be how I am, I do not wish to have chronic illnesses….I wish to have a different life please…thank you.
I have to admit, this is not what I expected from life. When asked “what do you want to be when you grow up?” never in a million years would my answer be sick. The warped perceptions people have of chronic illnesses doesn’t settle well with me and it causes me daily anxiety. I feel like I lead this double life. On one hand I’m educated and appear to be put together, on the other hand I feel as though it’s all just pretend. I suppose some days it’s not pretend and I actually do believe that I’m super-woman….yet there are so many days where the frustration takes me over that I can’t really be “normal” and never will be “normal”.
I had hoped that this last surgery would be the end to my pain, but also knew that my problems would be ongoing. what I didn’t realize is that within a year of this surgery I would trade my ovary for more diseases. Sure, I’ve suspected PCOS and some sort of autoimmune disease for a long time, but now it’s becoming a reality. And you know what scares me the most? Not what these things will do to me…but what OTHERS will think of me. How family, friends, co-workers will perceive me if or when they find out I’m still sick after all these health problems and that my last surgery just helped a bit but didn’t cure anything. I feel weird admitting that it’s about what others think of me, but it really is. To me a diagnosis is just putting a name to something I’ve felt for the last ten years. To others it lables me, and not in a positive way either. Yet because all of my problems aren’t apparent to everyone I feel like everyone thinks I’m full of shit or just pretending to be “sick”. That I’m a hypocondriac or that I’m overreactitng. Of course I have thought through all of these possiblities quite often and know they aren’t the case. Yet I know people think that about me. Or that I’m just lazy and that’s why I sleep so much. I could go on and on about what people think.
The question is…why do I care? and truly I don’t know how to answer that. I feel that I have lost a lot from being sick, but I also feel that there has been insight that I have gained. So there have been some positive benefits to what I’ve gone through even though I sense a loss of what USED to be my life. It seems like looking at someone elses life now. I am a completely different person than I was before. There is good and bad aspects to this so I try to focus on the good. I do end up greiving the loss of things that once were…friendships that are no longer, energy I used to have, optimism and so on. I greive these things like a death. Some days I’m angry, some days I’m sad, some days I’m ok.
I’m walking foreward and trying to be a little easier on myself. I keep trying to remember what I have gained by being sick not what I have lost. This is one of my biggest battles. I often focus on what I’ve lost, what people think of me and get sucked in and think those things of myself. I’ve always been hard on myself, so now imagine how it is to be hard on yourself when you can’t actually meet your own standards? physically I can’t do the things I want to, I run out of energy, I get sore, I get sick…..then I get frustrated because I have let myself down. For the longest time I thought things weren’t going well because I wasn’t trying hard enough, because I wasn’t working hard enough, because I just was being lazy or overreacting to situations. I had “friends” telling me that everyones life was hard, mine was no different, I just had to try harder and not be so depressed or anxious. Even though I was trying my hardest. I now know that advice was well meant, but came from someone who couldn’t comprehend what it was like to have a chronic illness AND deal with life at the same time.
Since then I have learned of the Spoon Theory, which explains what I go through in the most basic terms possible. I wish I had known it a long time ago and been able to show it to people who might have cared to read it.
Perhaps I will always care what others think about me being sick all the time. I hope that someday I won’t care, or the people that I fear view me as lazy or a hypocondiac will just not be in my life anymore. I would rather surround myself with support. I have enough skeptisism on my own to go around.
It was only a matter of time before I found the proper auto-immune disease that fit my symptoms. Trust me, it’s not like I WANT another diagnosis….especially one where there are few treatements, but it is also good to know that I’m not just nuts. I had my first doctors appointment this week to discuss with the doctor Fibromyalgia and an arthritis gene that I likely carry. When I explained everything that has been re-occuring he had to agree that it sounds like fibromyalgia. He apologized and said he was sorry because he knows it’s a diagnosis where there isn’t much that can be done about it…I sort of shrugged and said I’ve been dealing with stuff like this for over ten years with my endo, adeno, and ovaries….I might as well have a name to go with what I feel.
I had some blood work done and we’ll find out the results soon. I had the HLA-B27 antigen tested along with some other innflamation markers. We’ll see what comes of it.
The doctor wants me to try Lyrica for the Fibromyalgia, but we’re not sure we can get insurance to cover it, and I get a bit nervous with new medications and possible side effects. I wish I could just treat it naturally somehow.
I started a blog anticipating it taking quite a while for me to find a job so I could explore my crafty side, cook un-cooked recipies, take cute pictures of things and just be creative. In reality I should have known that life…well my life never goes that way. I aquired a full time job on December 27th (my birthday) and now I ponder the phrase “free time”…..I love how it rolls off your tongue….”free time” is it free because I’m free from work? or is it free because I’m not getting paid for the time? hmmm….either way I don’t have a lot of it.
I’m currently fighting a sinus infection. Though I haven’t needed antibiotics yet, I’ve been to the doctor to explain how I know where colds like this end up. He prescribed me REAL sudafed (Oregon you can’t get it over the counter anymore). and some pain pills for the massive sinus headaches I’m experiencing. I was really REALLY lucky and got the nice doctor at Urgent Care. Clearly I get sick on the wrong days most of the time…because generally I get this grumpy Nurse Practitioner who always grumbles that I should be going to my primary care for this instead of her. I announced to NICE doctor today that I was glad he was there because I didn’t want grumpy woman. He said he hears that a lot about her. She does her job well but bedside manner isn’t so great. Next time I’m needing urgent Care I will wait until this particular doctor is in. He also mentioned he’s the director….so…..yeah. I got a prescription for antibiotics…..but may not need to fill it.
Leverage starts up soon and I’m looking foreward to being a double income household. Sure it would be fun to go SPEND money, but that’s not the plan. I’m excited to start paying off credit cards and debt. Maybe get a “new” used car to replace our old grey honday that’s not going to last too much longer. The big challenge I face is finding a daycare for Claire that’s good and affordable. She’ll need to be there like two days a week if I continue to work weekends. I don’t anticipate my schedule chaging…as there aren’t many people willing to come work a night shift on the weekends….especially one with the skills to do timecards and kitchen charges in quickbooks. BUT…if I ever want to see my family again on a weekend……someday I may not want to work those hours. We’ll see.
One of our residents (whom I had become friends with) had a severe stroke the other day. I was sad to hear that she will not be coming back. It’s for sure the sad part of my job, I make friends with people in the 80s and 90s….who don’t always have the greatest health. I really wish her the best recovery she can have. She has a wonderful family to support her and she is such a kind soul with a feisty sense of humor.
Well I’m up in the middle of the night to take medication….so back to bed for me. More later
I never really thought about it…but I was practically raised in a retirement community. My great grandmother lived there, my family was friends with the owners, my mom worked as the hairdresser there and my grandfather worked there too. I used to spend hours wandering around with the owner, drinking coffee (at the young age of like 6) with the retired people, attending their parties and just having a great time. I loved the retirement home, I was never bothered by “old people” they had fascinating stories, and gave pretty cool treats to a six year old.
So what falls in my lap this week….a job at a retirement community. It’s the most amazing fit for a job that I’ve EVER had. I must admit that I’ve never really considered working in a retirement community, but now that I am, it feels like home. I’ve met so many wonderful people already and still have so many other people to get to know. Right now I’m getting full time hours but I’m bouncing between Managing the food area, and then working in the office swing shift three days a week. I could totally do without the food part. It’s been a long time since I’ve been a waitress….and therefore it’s a taxing job. That and I’m not in shape anymore due to just getting my health back. Soon though I feel they will realize my awesomeness and keep me in the office more.
My first day was by chance. I was going to come in on the weekend to train but on Tuesday I came in to Portland to do my drug test and paperwork for the job and it SNOWED. I got stuck in Portland and had to spend the night at my bosses house. Luckily I’ve known her since 4th grade. I decided I might as well work the next day so I jumped in and did an 8 hour day. I then took a day off and worked today (new years day) because it was a holiday and I would be paid double time! So I worked fifteen min short of ten hours today.
I am starting to find out that working at a retirement home will give me lots of interesting stories to blog about. I also now can add something else to my resume (a real job).
Today’s thing that made my chuckle….
other employee: Why is there a Fred Meyer Shopping Cart in the Lobby?
Me: I don’t know, I saw a banjo in it earlier
Employee….ok…….
Me: Well I would guess it’s for the banjo…I’m not sure where it belongs.
Little things entertain me.
Tomorrow I am having lunch with one of my dearest friends and her parents who I have known forever. They were like a second family to me for so long. She’s now pregnant and I’m excited for her and her husband. Her father has had brain cancer for a long time and I am also looking forward to seeing her parents. They are wonderful people. I think I’ll try to take my camera and get some pictures of these important people to me. I have some baby books to dig up for her, and some baby things to send with her.
Well, I thought my birthday was a total disaster, but around 9pm last night I was offered a part time job. By ten pm it had turned in to a full time job AND it works with my school schedual, there’s room for growth and within 90 days I will get benefits. I was hired by a company called Guardian Managment who will be taking over the managment of a retirement community called Creekside Village this week. Part of the time I will be doing office type work, and basically whatever they need me to do, then a couple days a week I will manage the dining room servers and keep everyone happy there. The good news is that it’s mostly a managment position and they will be looking to create staff positions in the next 90 days, so there will be room for growth. I could end up manager of the full facility, who knows. I could be moved by the company internally to another site, there are MANY options. It’s a big company and there is quite a bit of potential. Right now I’m just happy to have a full time job that works with school. I can hardly beleive it’s true at the moment but I do a drug test tomorrow, then start on Saturday. So I have a lot to figure out in the mean time. No I’m not exactly sure what I will be doing, but I’ll be paid to do it, so I’m not too worried. Any job is a good job these days!
So this year for my birthday….I got a full time job! YAY!
Auntie Anarchy Cupcakes always gets, makes, finds Claire the perfect gifts! This year it was a special felt bunny ornament for her Christmas tree! It’s ADORABLE! Also while we were at her house she stole two pennies and another ornament that she made and handed over gracefully (shown in the picture below).
Claire wanted her picture taken with the ornaments…she doesn’t look so great..she’s got a 100.6 fever….a REALLY runny nose, a cough and big bags under her eyes. Poor girl!
I forgot to take a picture of the bunny’s adorable tail.
Mommy and Claire taking a mid-day nap……it’s only because she’s sick…but I got cuddles out of it!
