Just existing and watching time go by.

Thank you for all the kind comments left on my blog. Sorry that I haven't written or updated in quite some time, I know how frustrating that can be when you've invested time in checking for updates. I've fallen into a bit of a depressing routine as of late. I wake up, check my SSD status, take my meds, eat something, fiddle around on the computer until it hurts too much and then nap until dinner or until Steven gets home at 1 a.m.
I know it's because I'm depressed. I know it's because I'm in constant pain and I don't know what to do about it. I do have hope. I have a new doctor in Syracuse who seems to be a bit better and more responsive than the dipshit I saw in the hospital. She does have some doubts on me taking cellcept though. She said if I ever plan on having children (which is something I can't even fathom at the moment) we will have to consider an alternative treatment. She has agreed to continue the rituximab treatments or at least until she can talk me into taking tysabri. I don't care which drug so long as I'm not the one doing the injecting.
I do have to have another treatment of solumedrol because she thinks my face and bladder issues are due to some inflammation. If that's the case, if it's a home infusion at least I can watch TV or something while they do it.
I also started therapy. No, not physical therapy. Therapy of the mind, folks. That's right, the hospital determined I'm a wee bit crazy and that I need psychological help. But can you blame me? Look at everything I've been through!
That's all that I have to say because my life has become boring and mundane and sometimes stressful.

I gave up.

I gave up and moved back home. So many relapses, so much illness, just so much. So here I am. Here I am back in New York, living in my parents house and under their rules. At 28-years-old, after being independent for 10 years, I'm trying to let it all sink in.

Since leaving Portland I've had a few stints in the hospital, my most recent being this past week. It left me depressed and untrusting of doctors. The doctor I was forced to see pretty much told me it was all in my head and that I just needed to make sure I was making sure I was breathing correctly. This was to avoid the full-body spasms I was getting. Then they discharged me. Meanwhile, I continue to have leg, back and arm spasms which are worse at night when I'm sleeping. They are so bad that I wake up in the morning and am unable to walk. After all of this, what's not to be depressed about?

The good news is that I have an appointment with a SSD neurologist, which means my case is moving along. Hopefully soon I'll know whether I need to appeal or if I get it. I've been talking to my mother about the possibility that if it's approved, of getting a very small dog to keep me company during the day when no one is home. I have a very hard time getting around lately, mostly due to the spasms, so it might benefit me to have an animal companion here. Although, it might be a better idea to look into an actual service animal. I don't know, it's all up in the air.

Weak

Would ya'll think I was weak if I just gave up and went back home?

A little self-hate. :/

Pain, so much of it. I can feel it in my arms, my hands, my sides. I'm bursting open with all of it and there's no one around that can sew me back up.
Pills are making me tired. I should sleep while I still have the chance but I'm much too stubborn and stupid for that. My fingers are adapting to being frozen in time, acting as if they are surrounded in fast-drying cement.
Tomorrow marks treatment round two in order to get me working again. Meanwhile I go on to short-term disability and get fucked sideways on income.
I'm almost ready to go back to New York. If this treatment doesn't work it's what I am going to do. Just go back to New York and get ready to roll over and die. There's no point to living like this. How can this even be considered or compared to living? I fill out a sheet, honestly, about how I'm feeling mentally and it goes ignored. I know I'm depressed, I know I'm having suicidal tendencies.. it's difficult for me to come out and say it. It's like admitting defeat or showing weakness, something I've never been able to do. That sheet is my cry for help and it's just going to get filed away and ignored. Waste of a perfectly good tree, if you ask me.
Everything has lost it's flavor and luster, I'm too busy worrying about things I can't control. It's just paper. It's just things. None of it matters when you are dead, in that case it just becomes someone elses problem. Not mine. What good is worrying about it? So what if I lose my car? It's not like I can drive it anyway. So what if I lose the roof over my head, will anyone out there actually allow me to become homeless? Homeless and sick, I think there are agencies for that.
The worst part of all of this, this entry took me more than two hours to write. I miss my hands.

-D

Ugh. Again? Really?

My attempt at a brave face during a round of steroids.

I wish I could wri te all of my fruustrations ou t without so much pain. With each relapse I feel like I lose ano trher piece of digni ty and an even larger por tion of who I am. I used to be so s tr ong when it came to figh ing this disease, I've lost that. I forget who that person was. With each bit of steroids my flesh fills out bit by bit unt il I'm just a rounded bit of dough. I'm playdouggh being stretched ou t and slammed into t iny puddles of mush. '

I won' t apologize for my typing and I won' ttake the time to edi t or spellcheck, because t his is wha t his disease has taken from me. My hands are useless. I feel useless. I can't take care of myself. I haveSteven he re taking care of me but how long befor e he grows weary of my neediness, my r oid r age an my anger and bolts? Could I seriously blame him? No, I'm no t sure I'd ghave the heaert to stick around ei ther.

I'm just so tired of fighting. What am I fighting for anyway? Resisting the urge to just roll over and die... I don' t know if I have trhge energy for that anymore. I'm just..exhausted.

Sometimes.. your body gives you clues

And it's up to you to decipher them. Sorry I haven't updated in several weeks, as it turns out I relapsed. The doctor said the lesion in my brain had been active for at least six weeks and given my last post, that makes sense!

It all started when I began getting these strange headaches. They started out to be bearable, I would pop some aspirin and then lay down and in a few hours they'd be gone. They started with this slight burning right behind my right eye. I should have known, with the burning, that it was something more. For me, burning always means MS. Then they began to get worse. The burning would spread into my sinuses and the back of my throat. They would bring me to my knees, make me physical sick, I'd sneeze uncontrollably, my right eye would water and I couldn't deal with the symptoms, it was too much.

I took a trip to urgent care, since I don't have a primary in the area yet, and the doctor said it sounds like cluster headaches but since you have MS, we want you to get checked out by a neurologist as soon as possible. That doctor saved my life. I wish I could remember her name because I would send her flowers, a card or a fruit basket, or heck, all three! She made all the calls and she got me in to see a doctor at the Providence Multiple Sclerosis Center. Amazing!

The meeting with the PA was super informative and based on the pain, they wanted to get me in to an MRI right away. I went it for the MRI and as it turns out, I have a super large lesion on my brain that's been active for about six weeks. They sent me to the infusion center the next day and I started solumedrol.

This time around they did not put me on prednisone to taper and it was hell. The first week after I was so tired, sick and miserable all I did was sleep. Finally a few days later the giant boulder had been lifted off of my head and I was able to function. I could stand up without falling over, I could think, I could drive, life was getting back to normal.

I was also told I'm eligible for a clinical trial that will pay for everything, which would be great since my insurance company considers this a pre-existing condition!

I've also started to get a handle on my PCOs. This time I did a little research before going to a doctor and handpicked the one I wanted to see. Dr. Amato was actually recommended on a PCOs forum I troll around a bit. She turned out to be super nice, and put me at ease. She passed my test but only managed to tell me the stuff I already knew. Her solution was also just to give me a “band-aid” treatment of progesterone and birth control, all before getting the results back from my tests. I didn't have the courage this time to ask to have my cortisol levels checked but I have an appointment in a month so I'll bring it up then. Yup, this one didn't scare me away so I'll actually be going back!

And that's all the updating I have to offer. Although, I should send out a public thank you to Steven who drove three hours each way, twice, to take care of me when I was really bad. He made sure I didn't fall and did a wonderful job making sure I was okay. What an amazing man. After five years in a terrible, abusive, demeaning relationship- Steven is breathe of fresh air!

Coordination and my sense of “self” goes out the window.

I’m not sure if it’s a lack of practice, lack of exercise or it’s the MS brain screwing up but I’ve noticed something particularly interesting. My coordination and sense of self is deteriorating. What do I mean by sense of self? It’s the idea of where you are in proportion to things, like walls, chairs, stuff like that. I find myself constantly bumping in to walls or pushing things over on accident. This mixed with a lack of coordination can cause a series of embarrassing moments.

I never realized how bad my coordination was until I took up water aerobics. Simple moves that even the most disabled of people would be able to do, I could not. My brain just could not wrap itself around how they were doing it. And I mean literally, four step movements involving arms and legs. Knee up, arms out, other leg out, arms in? See, I still can’t even do it when I think about it and picture it in my head. I just can’t fathom how to replicate these simple movements. I wish I had done things like these before my first episode of MS so I would have something to compare it to. Have I always been this lacking in the area of coordination? I didn’t think so, but possibly?

Perhaps I was just slightly under typical coordination. I always remember being slightly clumsy but my attempts yesterday were borderline ridiculous! It was getting me to the point of frustration and I debated giving up and calling it a day. But I stuck it out and I’m glad I did. While the exercises weren’t enough to cause me to break a sweat, it’s still exercise and it will eventually help my coordination and perhaps also assist me with my balance issues. Besides, what could be more therapeutic than splashing around in warm waters with a pool noodle?

Now, the issues with my sense of self, that will probably never go away and will more than likely get worse as I lose weight. Mostly because I’m used to being larger so I’ve adjusted to accommodating that size. Ah well, you can’t win them all!

What about you? What do you do to help yourself be more self-aware? How about for coordination? Do you exercise? Practice yoga?

-Desiree

If you thought normal dating was complicated…

Dating when you have multiple sclerosis is like your first day on the job, do you tell or don’t you tell? Do you bring it up in casual conversation?

“Oh hey, I bet you didn’t know this but I have multiple sclerosis and polycystic ovarian syndrome. If this date progresses into something serious you might get the pleasure of being my personal caregiver someday and I may never be able to give birth to your children. Isn’t that exciting?!”

It’s like a PSA for dating. It also opens the conversation for all sorts of questions like, “aren’t most people with MS in a wheelchair?” “Well you look fine to me!” “You have MS?? You look fantastic!” The last two always get my goat, as if you can actually visually see the lesions on my brain or spine. I may seem fine on the outside but on the inside my body is taking a beating.

This is my first time dealing with this since I was diagnosed. At the time I received my initial diagnosis I was already married and the phrase “in sickness and in health” was tossed around quite a bit. I think it’s important that your significant other knows exactly what they are getting into and give them a way out. If the person is a decent human being, then you’re lucky, because chances are they’ll stand by you and offer you support. If they are anything like my ex, run, run far-far away. Their anger, guilt and frustration will come back on you and that’s an altogether unhealthy situation to be in.

So now I’m an MSer and PCOser on the prowl. Sort of. I’m actually currently seeing someone who is fabulous. We’ve already had “the talk” and it went pretty well. I was fortunate because we’ve been friends for a little bit of time and he knew prior to our dating, how I’ve struggled with my MS and PCOs. Although he knows about me and my future full of struggles, it doesn’t make it easier. How do you ask someone if they are willing to date you and if all goes well, ultimately take care of you physically, emotionally, financially? How do you tell them that there may come a time where difficult decisions will be made and if they would be able to handle it? You obviously don’t bring this up on the first date, unless you want that person to run away, screaming. But I think it’s important after maybe the third or fourth, when you’re getting quite cozy to be honest about your diagnosis. You don’t have to tell them that you may never get pregnant but you might want to tell them, hey, now that things are going so well, I have MS and PCOs, would you like to ask me questions? Be prepared. Know your stuff. It’s your responsibility to be able to answer with honesty and knowledge about all things MS/PCOs.

For the more serious conversation, I believe it’s safe to save it for when you both exchange those three special words, “I love you.” This is when it becomes important to lay it all out on the table. You both have the right to know, if the relationship proceeds, how things will go down. Once you’ve invested real feelings into it, it’s important to know where and how you stand in regards to them and your disease.

I got lucky with Steven. He’s a super nice guy and is completely willing to do whatever it takes if it comes down to it. I’m pretty sure he’d say it’s because he loves me, but really I think his sense of duty and doing the decent thing outweighs love in this situation. We’ll see how it goes.

I want to hear from you? How and when did you tell your significant other about your diagnosis? What was their response?

Ciao
-Desiree

Depression and Anger

There’s this dark side of chronic illnesses that not very many people like to talk about. Depression and anger are both significant emotions for those who not only have multiple sclerosis but PCOs as well. It’s as if getting diagnosed with both, you’re more than likely to, at some point, feel the debilitating side effects of depression.

For me, it always starts the same. I’ll be buzzing along, feeling fine when suddenly I’m hit with this overwhelming feeling of anger and dissatisfaction with my life. There’s never an exact cause to these feelings and there’s never one event or person that is to blame. It just happens.

For example, yesterday I was trotting along and feeling pretty decent when this dark cloud moved over me. It started with anger, this overwhelming anger that gets directed outwardly towards whoever is around me. Unfortunately, at that time, I was speaking to Steven. I told him that I had to let him go before I said something I would not only regret later but also something I did not mean. I knew it was going to happen, I could feel it welling up inside me like word vomit.

Thankfully, I was able to push these feelings aside while speaking to my roommates, as it would not have been fair to take this wave of emotional unbalance out on them. It continued, though, once I was alone in my room and alone with my thoughts. This overwhelming urgency to cry came over me, as well as this deep feeling of dread and sadness. I called and spoke to Steven and cried verbally on his shoulder. He was sweet- he listened and was filled with understanding. It’s moments like these that really make me notice the difference between someone who cares and someone who is just “there.” It also makes me thankful that I have the people in my life that I do. With him, it’s easy as he never passes judgment, never criticizes me or tells me that I need to seek therapy, he just listens. It’s exactly what I needed at that exact moment. It made a world of difference. My overwhelming emotional state eventually led to me passing out from sheer exhaustion. The one thing that really upsets me about these waves of depression is it leaves me feeling rather groggy and feeling like I’ve been “drugged.”

Living with these waves of depression is just a fact of life for people with MS and PCOs. I could consider getting it treated with drugs, which I would, if it happened more often than it does, but we’re already fed so many other drugs as it is. Ask someone you know, who has both MS and PCOs, to show you their drug cabinet and you’ll see a rather large assortment of drugs. What’s one more?

A brochure on depression from the National MS society states that “people with MS experience depression more than the general population or people with other chronic illnesses.” In fact, some research shows that people with MS may actually be more likely to be depressed because of the physiology of multiple sclerosis. For women with PCOs, depression is considered one of the symptoms of the syndrome. And since women are more likely to have multiple sclerosis than men and PCOs only effect s women, it makes sense that, as a woman, depression is not something to take lightly. For me, it’s like I’m the cream feeling in this oreo of depression. Eventually, it’s something I will have to consider seeking treatment for.

With that being said, if you happen to be going through the symptoms of depression, talk to your doctor. You have enough things to worry about- depression shouldn’t be one of them. And if you happen to be feeling suicidal, please, get help!

With all my love and encouragement-
Desiree

You shouldn’t let the little things bother you, but they do.

There’s something that happens when I speak, think and write and I’m not sure there’s even a name for it. Maybe you might know? Some sites call it cognitive dysfunction.

My multiple sclerosis and brain lesions have left me with cognitive issues I never had to deal with before. I’m overly sensitive about them and when they are pointed out (like when I use the wrong word or it comes out jumbled) I’m filled with so much shame and then anger that I often direct it towards the wrong people. I don’t tell people about this, because for me, it makes me feel stupid. It makes me feel less than adequate and beneath my peers. Sometimes it makes me so angry I direct it towards others and say the most terrible things.

I honestly don’t know how to deal with not only the emotions- the feelings of loss, but also the anger and resentment it builds inside me. I just wish it would go away. I wish it didn’t embarrass me as much as it does.

I think part of the issue stems from the fact that I used to have excellent spelling and an even better grasp on vocabulary and grammar. I’m easily jealous at those around me who can use their linguistic superiority where I’m left trying to remember words I once knew. It terrifies me that this is happening, that maybe, soon, I’ll have no grasp of the meaning of any word, that when I speak it will come out slurred and jumbled and my memories will just serve as a source of confusion. When I went back to school the easiest thing would have been to finish a bachelor’s degree in journalism. It would have made sense. But I didn’t. Not because I didn’t want to but mostly because I was terrified that my secrets would be exposed and everyone would know that I’m a fraud. Google and spell check have become my best friends.

But yet, I’m overly sensitive about the whole thing. I get offended when people laugh at my confusion over words. I’m hurt but yet I don’t say anything. To say something would be admitting to my shame. It would show my remorse over the loss of these very precious gifts I once had. Even now, my heart aches in such unimaginable ways. If only, when I spoke, my words could match the true depths of my mind and heart instead of being left to scramble in the ashes of a once intelligent person.

I know I’m not an idiot, but the more and more these cognitive issues become present, the more and more I begin to question it all. Who am I if I no longer have the comfort of my words? What will happen to the poet within me? Will I wither away into the silent recesses of my brain, unable to speak my thoughts clearly but know that they are there somewhere?

I’ve tried to explain it to those I love the best way I can, but I’ve never really expressed how it makes me feel. I’m not sure if they understand. I’m not sure I even understand why it is happening. All I know is I mourn the loss of my words. I mourn the loss of my ability to have a conversation with people without getting confused, without losing my train of thought, without words coming out scrambled or wrong. I miss feeling like I’m adequate. I feel like I’m being left behind.

Here's a link that explains it better than I ever could: Where do the words go, when you can no longer remember?

Seeking a doctor who cares enough to listen.

I've been thinking about my appointment towards the end of the month and I'm beginning to have some reservations. I hope this will finally be the one that I can count on to treat the symptoms and not the appearance. So many times in the past I've had doctors who just shrug me off as being overweight and only offer the advice “if you lose weight, you'll have normal periods.” While that my be in part true, there are much more sinister symptoms at work.

I have to know “why.” I will not simply just accept this from a doctor who supposedly specializes in PCOs. I honestly, wholeheartedly believe there is something much more to the puzzle that is my body than a simple “lose weight, feel great,” explanation.

I know there is. There has to be. I spent several months busting my ass on a low calorie/low fat diet only to lose four pounds (in the past, not recently- lol). I've done the whole weight watchers bit. I've even considered surgery (despite my MS). I know there is a missing link in the puzzle. Why?

Because the only time I've had a period in the last four or so years is when I've been on steroids. I'm not sure if it's the solumedrol (IV) or the prednisone that is responsible, but something is. Each time I've been on steroids I have one cycle and then as soon as I'm off them, I don't have anymore. There has to be something there. Some sort of explanation hidden in the recesses of my adrenal or pituitary glands. Something isn't working right and the steroids only help to kick it into gear.

There has to be another connection. Has there been a study done on the number of women who have MS that also have PCOs? Three quarters of the 400,000 people who have MS are women. According to womenshealth.gov, “between 1 in 10 and 1 in 20 women of childbearing age has PCOS. As many as 5 million women in the United States may be affected.” Of the women who have MS there has to be women out there that also have PCOs.

Studies have shown that some women who have PCOs are deficient in a hormone called estrogen. This same hormone has been shown to, if given at a steady flow (especially to pregnant MSers) actually help women with MS (some researchers state that the best treatment for women with MS is pregnancy). There's also the connection between women with PCOs taking corticosteroids in order to lower their androgen (male hormone) levels. This is the hormone, when at a higher level in women, results in a lack of menstruation, weight gain, acne and hirsutism (excessive facial hair).

So would an effective treatment be something like, estrogen and prednisone, as well as my rebif? If it doesn't work, what does it hurt? If it does work, maybe some doctor out there will get a research paper on PCOs and MS published. Who knows? The bottom line is that all I want, right now, is a doctor who will actually listen to me. I don't make excuses for my weight, I know it has a lot to do with poor diet and lack of exercise but I also know there are other factors at play. Will this new doctor finally be the one to listen? Will she order the proper tests? Will she do an MRI of my adrenal and pituitary gland? I'm not sure, but I'll keep hoping.

-Desiree

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.

I love the quiet days.

Today was rather mild as far as symptoms go. I took my third day of six prednisone and look forward to tapering down to five tomorrow and so on. I'm on the second day of my prednisone induced menstrual cycle and the cravings are horrendous. I'm not even entirely sure what's driving them, the prednisone or the fact that PMSing. And I am. I'm irritable, depressed, anxious, bloated and broken out. I can't even imagine being anymore unhappy with my body. I need to start getting out there and moving around before the prednisone makes more fat little grubby pockets all over my body. The only good thing is that my vision is slowly coming back, I can actually make out differences in brightness.
The prednisone acne is bad. Very bad. It's all over my face, curves around my ears and is starting to spread down to my shoulders. They look like blisters more than anything else. My body is literally pushing the medicated toxins out of my body. It's disgusting. I feel like a game of connect the dots on a child's play pad.
I think, by far, what's getting to me the most is the depression. It's making me homesick, which is a very rare thing for me to feel. I've got this nagging little voice in the back of my head telling me I made a bad decision. I know this is far from true, that I made the right decision for me but it's this damn depression.
Tomorrow is a new day with a fresh slate. We'll have to see what happens.

I wish I could just understand.

I'm sick of doctor's not listening to me when I tell them something's wrong with me. I've been to a rather rude endocrinologist who shrugged my rather odd symptoms off as a just another PCOs'er who needs to exercise and lose weight. She completely disregarded my statements when I told her there was a connection between solumedrol/prednisone and my periods. I honestly believe that she, after seeing hundreds of other overweight patients, just looked at the shell casing and dismissed me. It's a shame. I really think there's an opportunity here at a discovery.
You see, it all started when I was in my early teens. I received my period once, from the time I was 13 until I was put on birth control when I was 17. That was the beginning of my journey but there's been a few bumpy parts along the way. Bumpy parts, that just don't make any sense.
Prednisone makes my body menstruate. That's right. Of all the things the doctor's have put me on including birth control, metformin, estrogen, etc. the one thing that allows me to have a cycle is the prednisone. At this rate, it's the only thing that works. I would consider it a fluke if it happened once or twice while on prednisone but so far it's happened during every one of my treatments.
I've said this before, but I can't help but feel it's all connected. I've sometimes considered the idea that it may be cushing's or some related disease but nevertheless, it always points to hormones. Perhaps it's some sort of adrenal crisis? I haven't the slightest idea. My main goal, when I get insurance out here, is to see a specialist, someone who is actually interested in these weird symptoms and will listen to me when I tell them something is wrong.
I think it all comes down to discrimination from doctor's. Whenever they see an overweight person walk into their office they immediately think of this person as unhealthy, a hypochondriac and just in need of losing a few pounds. I really wish doctor's would treat the symptoms and the body, not just my shape.