To tell or not to tell, that is the question.

Now that I’m employed as a permanent employee, I’ve begun to toy with the idea of whether or not I should disclose to my employer as well as my coworkers that I have MS. In my last position at the newspaper I was met with understanding from my coworkers around me but it was upper-management that I would constantly butt heads with. This has left me with a feeling that maybe I should keep my mouth shut.

But something also tells me that this place is different. One of the strongest attributes of this company is that they embrace our diversity and there’s a definite level of acceptance here. I feel like there may even be the slight possibility that some may join in a cause or two if I approached them with it, for instance, participating as a companywide team in an MS walk.

What are your thoughts? Did you tell your employer and coworkers? If so, how was the news received? I’d love to hear your feedback.

The way things were.

I’ve been rather terrible at keeping this blog updated despite my promises in the past to be better at it.

The reason? Recovery.

I’ve been working at embracing my life and pushing away all the stress. I’m really, quite honestly, living life one day at a time.

The good news: I’ve completely recovered from my last relapse. Thank goodness! I have no lasting side effects, except for random bouts of major fatigue. I know I’m very fortunate and I’m thankful for all of your prayers and kind words during my ordeal.

The other good news? I landed a job, was hired on as permanent after only a month and was given insurance at the beginning of my third month. Unfortunately, because of my relapse in January, I can’t get treatment for my MS quite yet but I’ve been told I will be able to in November. So I just have to hold out until then. I’m sure wonky things are going on in my brain and spine but I’m just trying not to worry about that right now. Stress never does us any good, no matter if you are healthy or not.

I’m also in the process of trying to change who I am as a human being. In the past I’ve let stress rule me, I’ve been bossy and I’ve just been unhappy. I think embracing the idea of living life one day at a time is really helping with this. I do have my moments where the depression pulls me under, but it’s so rare now it’s like a blue moon. Moving to Portland really was the best decision, for me. Some might argue that that decision was selfish but after spending five years or more taking care of others instead of myself I think I get to be selfish! Now, I’m happy. Not the pseudo happy where you plaster a fake waxy smile on your face but the deep down, ray of sunshine kind of happy. I’m grateful for the life I get to live now and all of the wonderful people I’ve surrounded myself with. I’ve decided that if you make me unhappy, if you are overly negative, chances are I’m going to cut you out of my life. It may be a slow and painful process but negativity only breeds negativity and I, for one, don’t need that in my life.

Despite not being able to take charge of my MS at the current moment in time, I am going to tackle my PCOs. I have an appointment with a OBGYN/endocrinologist/fertility specialist who has gotten some great reviews on PCOs websites on the 29th. I may have to reschedule it due to a previous engagement but I at least have put my foot in the door.

The next step in my life is filing for divorce. Right now I’m trying to get the funds together to make this a reality, but in all essence, it’s something we both want so when the money is available it will be a really simple process. I’ve also started seeing a really great guy who just wants me for me. There’s no pressure and he makes it easy.

Life with Jan and Chrissey is also perfect. We have our moments now and then but otherwise we get along splendidly. Chrissey is like the sister I never had (no disrespect to my actual sisters, but the age difference between didn’t really lend itself to you being a positive influence in my life). I call my lovely ladies out here my “Oregon” family and I love them all dearly.

I’m off to put the positive karma out into the universe. You all take care and don’t be a stranger!

-Desiree

Seattle MS Walk

Hey readers!
My friend Steven is doing the MS walk up in Seattle and is seeking donations. If interested click this link and donate! It's a great cause.

Thanks!

I've been terrible!

I am so incredibly sorry to those who have been following my journey via my blog. I've been so deeply devoted to school, searching for a job and living life that my blogging has been put on the back burner. So here we go with updates.
I finished up the tapering of the prednisone weeks ago but I'm still getting the acne side effect, which I know will be the case for a few more weeks to come. There's been no sign of my menstrual cycle since my last period back in January. This is how I know that there's a connection between prednisone (steroids) and my lack of period and my other symptoms (hirsutism, weight gain, etc.). I've also managed to gain back the weight I lost on prednisone as well as gained back the inches I lost as well. How depressing. If only they would allow me to take one pill of prednisone a day, this way I could not only have a period like I'm supposed to but lose weight as well. I also have more energy when I'm on the prednisone. I'm not gonna lie, I'm a hyperactive prednisone girl. Some would say it's annoying but when it's compared to the MS fatigue, I like that version of myself better.
I've recovered about 80% of my vision, which means my eyesight is only slightly dimmer than it used to be. As I've told people before, it's as if someone has hit the dimmer switch in my vision. I'm back to driving, which I'm thankful for because now I can hit the streets and go on job interviews.
I've decided to finally consider going on a low-carb diet. There's all this research out there that suggests that there is a link between PCO's and insulin resistance. I'm not sure how acurate it is, but it seems to be the only thing that works for them. I've also considered taking some dance classes in an attempt to get some exercise that will help tone and strengthen muscles which will be handy during an MS flare up.
That's all I've got to report, take care of yourselves!

Keeping busy is the best way to be.

I haven't updated in a few days and for that I must apologize. I've been incredibly busy applying for jobs, going on interviews and going out with Chrissey, her dad and her mom. At this point, my vision isn't much better and it's come down to my right eye compensating for my left. I've been able to drive, although I have to do it carefully since I only have a bit of peripheral vision in the left. The dimmer switch is still turned almost all the way down leaving the center of my vision shadowed in the dark. It's annoying but I'm adjusting. I can't wait until I get to the point where it just a.) seems normal or b.) my vision returns. I'm hoping for the latter.
The count down until I'm off prednisone continues. I have to admit, I'll be sad to see it go since it's the only thing that aides me in my weight loss. This is how I know my body is all sorts of screwed up. When most people lose their period and gain weight, I gain my period and lose weight. It just doesn't make sense. If it weren't for all the terrible side effects I'd beg my doctor to let me stay on it, just for the benefits of the weight loss. It wouldn't even have to be a large dose, just maybe two pills a day to keep the weight loss coming.
There isn't much else to report. I continue to suffer with acne and hair growth, but, it's all part of the daily challenge with these two diseases. I'm also a bit nervous right now anyways because as it turns out, I no longer have insurance. I'm desperately trying to get on state insurance and on Monday, between interviews I'm going to check out getting on disability since I'm still blind. Let's hope I get it kids!

Living each day.

I didn't mean to miss a couple days of posting but I found myself on a spontaneous adventure that was much needed. After not being able to drive and not having much to do, I was getting a bit of cabin fever. We managed to solve that problem.
The weekend was rather exciting and served as a reminder that even though I'm sick, I can be spontaneous and adventurous. I don't have to give that up, nor do I plan to.
Saturday started off rather weakly as I was troubled with the most terrible of cramps. At one point I thought my uterus was going to evacuate, it was so bothersome. The day turned around when we went and decided to have lunch at a local restaurant called Ohana in the Roseway Theater neighborhood. It was Hawaiian food and oh so delicious. The sun was shining and I've noticed on days it's particularly bright I see a bit better. We then proceeded to the Roseway Theater and watched The King's Speech which was pretty spectacular. It's interesting watching movies with one eye pinched shut so I don't have double vision. It's annoying but it doesn't detract from the movie.
Later that evening Chrissey and I went to her friend Kristen and Shari's for a bit of board games and rowdy conversation. It was just what I needed, a nice welcoming embrace to the Portland community. In fact, it was so much fun we didn't want it to end. We gassed up the car and decided to drive the two hours to Lincoln City, eat at Maxwell's and stay overnight. The coast is one of my favorite places, the smell in the air and the wind, to me there is nothing better. We drove back yesterday morning, stopping and snapping pictures and having a good time. I have to say, I love late night car rides with Chrissey. Sometimes the conversation gets so deep and fascinating that we have to pause for several moments of silence while we process it all. I learn so much about her and even more about myself on these little trips. I think that's what I missed most on my travels across the country. I missed connecting and sharing that profound and life altering experience. It was nice to be able to have a bit of self reflection but I think it would have been an amazing experience if I was able to share it with her.
The vision is slowly improving although today there doesn't seem to be much of a difference. The prednisone is putting pressure on my eye and it aches, but it's tolerable at this point. It's not like weeks ago when I nearly wanted to pluck my eye out of my head because the pain was so severe. I'm not satisfied with the rate of progress but alas, any sort of progress is better than the alternative.
I have a job interview on Wednesday as well as an oil change so it's my hope that by then I'll be able to drive. I really should start resting my eyes more frequently as I suppose that would help. I did figure out the best way to describe what it is I see. At this point it's almost like someone turned the dimmer switch in my eye all the way down so it's difficult to really focus or make out any specific details. I hope for my sake, and the sake of my wallet that I will be able to see soon. I need to find a job.

Accomplishing stuff, a MSers dream.

My brain isn't fuzzy today. There's been a cloud lifted and I think it's because I'm beginning to taper off of the meds. I was actually able to complete my assigned readings for my Enlightenment class and then move on to the discussion. Yay for accomplishment. I've also applied for several jobs, including state and country jobs (which has good benefits).
I hate the days when I don't really feel like I have any insight to offer. I just feel like I'm getting better, each day I regain a little more of my vision with the hopes of tomorrow it being restored completely. I hate taking life one day at a time, I'd prefer everything to be instantaneous and set out in front of me like a Thanksgiving meal. I'm definitely a child of instant gratification, that's probably why I have no will power.
I do hope I'll be able to drive soon. My car is crying out for an oil change and I'd like it to get one but I just don't have the way of getting it down there. Come on prednisone, you've already made me pimply and quite round, why not do what you're supposed to so the public can be exposed to it as well. I'm all about sharing.
At least tonight is going to be low-key. It's just a movie and pizza. Nothing difficult about it and since I've completed what I needed to I can actually relax. If only all of us MSers could just relax. Tomorrow, on the other hand, is a completely different story. There's been mention of the word pedicure and my grubby bits are curling backwards in protest. It'll be the first time, hopefully not the last.