Living With MS and PCOs

I gave up.

2012-01-27T20:32:00.000-08:00

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

2011-11-08T17:43:00.000-08:00

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

A little self-hate. :/

2011-10-26T20:30:00.000-07:00

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?

2011-10-23T23:18:00.000-07:00

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

2011-08-20T15:36:00.000-07:00

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.

2011-07-14T11:15:00.000-07:00

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…

2011-07-08T10:45:00.000-07:00

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

2011-07-08T08:34:00.000-07:00

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.

2011-07-05T07:24:00.000-07:00

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.

2011-07-02T15:13:00.000-07:00

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.

2011-07-01T14:51:00.000-07:00

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.

2011-07-01T13:04:00.001-07:00

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

2011-03-22T01:09:00.000-07:00

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!

2011-03-20T23:53:00.000-07:00

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.

2011-02-05T22:39:00.000-08:00

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.

2011-01-31T11:53:00.000-08:00

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.

2011-01-28T16:46:00.000-08:00

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.

2011-01-27T23:13:00.000-08:00

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.

2011-01-26T16:51:00.000-08:00

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.

The sufferer conundrum.

2011-01-26T01:47:00.000-08:00

I recently came across a blog written by a fellow MSer that could have easily been written about me. It was the condemnation of using the terms “MS sufferer.” I use these two terms together, at the frown of my fellow blogger, because I have my own reasons for using them. I consider myself a sufferer because, at this time, it's something I do suffer with, just like I have to suffer with annoying in-laws or noisy upstairs neighbors. It's the annoying pest that whistles in my ear while I go about my daily business and I suffer with it, because it's the hand I was dealt. One man's journey is another man's suffering.
It almost seems petty to attack something so silly as a term, or as it's put elsewhere, a label. It reminds me of those days in high school where we protested the labels we were given by society while others embraced it. Who cares? If I choose to consider myself a sufferer, that's my choice just as it's your choice to use a different phrase. Heck, I even call myself a PCOs sufferer, because, you would too if you've ever spent a half hour in front of the bathroom mirror plucking chin hairs with tweezers you can't even see.
Quite honestly, I picked the phrase up from a medical professional and it was just something that stuck. Instead of attacking the phrase, offer some other coined term we can use instead. Instead of picking apart labels, wouldn't it make more sense to present a united front? Remember, we're the source of available, real life information for the newly diagnosed.

My face is a volcano.

2011-01-26T00:02:00.000-08:00

Or at least it looks that way. No, volcano is the wrong word, more like moon-faced. The small steroid pimples have begun to pop up all over, mostly in noticeable areas like above my lip (ugh) and around the corner creases of my mouth. I just spent a futile ten minutes scrubbing my face in a feeble attempt at trying to control my acne with a face wash. There's not much you can do when it's literally your body trying to rid itself of the toxins created by the medication. My face is a poster campaign for rejection.
I'm trying to decide, at the moment, what's worse. The acne or the hirsutism (facial hair) sweeping across my chin. I bet my body is loving feeding off the steroids so it can start new cultivations of hair colonies in abnormal places, like perhaps a patch right at the base of my spine or the fatty hump curving between my shoulder blades. It all has a sense of poetry to it, doesn't it? I should just be smart about it and just let it grow into a beard instead of spending the time to sit and pluck each hair. Then I'll fasten down my breasts and wear flannel. Hey, I bet it could really fly here. No need to even take testosterone, I make enough of it on my own.

And now I notice a grumpy bit.

2011-01-25T15:22:00.000-08:00

So, given that I can't see, I can't really see what's happening to my body as a result of these meds. But, I still have the sense of touch and as I was feeling my face I discovered I now have the lovely little solu-medrol pimples popping up all along my hairline on my forehead. Lovely. As if I didn't feel bad enough about getting rounder and softer, now add in lovely pimples and faded vision. What's next? My period? Curse my tongue!

Is multiple sclerosis a treatable condition?

2011-01-25T15:10:00.000-08:00

Is multiple sclerosis a treatable condition?

Taft said they didn't want to put me on this drug. I wish I could recall why. I hate doing the rebif injections because of the site reactions and the side effects. My hope is that once I get insurance out here I can locate a neurologist who would be willing to get me started on this drug.

Colorado Multiple Sclerosis Patient Reaps Benefits From Dahn Yoga

2011-01-25T15:06:00.000-08:00

Colorado Multiple Sclerosis Patient Reaps Benefits From Dahn Yoga

This reminds me of a DVD I bought called heavyweight yoga that actually has a segment on it for people who are bedridden. Interesting.

Record keeping is so important.

2011-01-25T14:34:00.000-08:00

I know that once I feel better I'm going to leave this blog as a side thought and proceed through life until I need it again. I've got to stop doing that. I need to make the most out of this blog as a way to keep track of things, such as: what sets off a replase, how am I feeling, is there anything important about the study of this disease I should share.
I originally started this blog with the hopes that it would be a way for those seeking information to find it. Thus far, I believe I've been rather unsuccessful. The primary focus of this blog has turned into a sounding board for my complaints about doctors, insurance, employers, etc. Which, in a way, can be helpful to those who want to understand the difficulties some of us face. But alas, readers, I feel in many ways I've abandoned what I initially set out to do, to be a source of information, to record everything that's important both personally and medically. So, from here on out, that's my main priority. I will attempt to write everyday, even on days where the sun is shining and I'm out living life. I think these are the most crucial of days to document anyway, to further show that there can be light at the end of the tunnel.
Now on to the good stuff. The prednisone is making me feel like my eyes are glassy and everything is a bit blurry. I can't recall if I've ever had this side effect before, so I'm willing to take comments from other MS sufferers out there who have experienced this or know someone who has. It's making seeing difficult overall because everything is just so darn blurry.
The good news is that earlier I experienced a wee bit of double vision, which means something is working. If I cover my right eye and attempt to peer out with my left I can almost make out the shape of my hand but I have yet to see any defined details.
I called around today and found out information about applying for state medical insurance as well as food stamps to help me out until I can look for a job. Jan, Chrissey's mom, is bringing me home the applications because said eye complications are getting in the way of seeing the app online.
At their insistance I've begun to take Vitamin D and Vitamin B12 daily in order to get the vitamins I need according to MS recommendations. I know the B12 is supposed to help in the healing process of the optical neuritis. I can't say either way because I've been on the solu-medrol and that usually complicates research.
I've put on about five pounds since this process began last Thursday, which for anyone who has been on solu-medrol this is a small miracle. Usually at this point I'm bloated, retaining water and all swollen. My pants feel slightly tighter than usual so I know I'm retaining some fluids. I'm also incredibly thirsty thanks to the heartburn the solu-medrol and prednisone makes me have. I think it's one of the reasons I slept so terribly last night, the heartburn just would not quit. At this point I know adjusting my diet won't do anything for it so I just have to suffer until my body adjusts.
My mood is better today. Yesterday I had a bit of roid rage followed by a complete breakdown of tears and sobbing. I hate to get to that point but it was an overall emotionally draining day and I know, again, the meds don't help. In the end, it all worked out like Chrissey said it would and now I've got my oral meds and I'm a happy young woman. Each day is another step towards recovery.
Since this flare-up hit me so suddenly as I arrived, I really haven't had the chance to reflect on my life back in Syracuse or even had the chance to explore my new surroundings. I have to investigate how I feel about leaving my husband and my old life behind, but I think that can wait. I have the feeling it's going to be a difficult situation to think about but I'm not blind (haha) to the fact that I know I made the right decision. I'm craving the chance to get out and really see things. I've been taking brief trips with Chrissey when we have the opportunity and being so blind I just feel like I'm missing everything. I'm excited to get to the point where I will be able to drive again. I think that's the part that makes me the most miserable, the not being able to drive bit. I love to drive, it's where I go to think and get away and right now I'm getting some serious cabin fever.
All in all, despite everything, today is turning out to be a good day. Even when you're sick you're entitled to those moments where everything is calm and at peace. I like that.

Sometimes being a gnat in one's ear really pays off.

2011-01-24T20:41:00.000-08:00

I hated that I let me emotions take control of my situation earlier. I try to be a bit more reserved with them, especially over the phone, but the whole situation was even to much for me to handle.
There's one thing I've learned about life while having this disease. No one else will ever be your advocate, you have to fulfill that role. So, I annoyed them and I called and I left messages and I left messages with other companies and I even called the answering service. That's what did the trick.
I have my meds.. and I'm happy. I can take it in the morning and not be up all night like I more than likely will be tonight. So, things worked out in the end. I spilt a little anger, shed a few tears but I'll just blame that on the steroids and not me feeling sorry for myself. Problem solved.

Roid rage. Today blog, you'll be the place that I rant.

2011-01-24T13:43:00.000-08:00

I'm frustrated. Frustrated with not being able to see and frustrated with doctor's who just don't give a rats ass. It's so incredibly dangerous not to taper off of with the prednisone. What's worse, is that the idiot receptionist told me I could come and pick the script up! This is after the several times I told her that I was in another state!
So let me start from a comfortable point just so I don't muddle up the story with my anger and frustration. I received my first round of IV steroids from the nurse on Thursday of last week. She went over with me why I need to follow up with the prednisone and taper off (mostly my body will crash and I'm at risk for a super bad relapse like I had before, which includes hospital beds and paralyzation). This was after hours in New York and I knew that I would have to call first thing in the morning to get the ball rolling on Friday. So I did, I woke up early, called the Shuk's office and explained to the receptionist (*insert eye-roll here*) that I needed the meds called in and since I was relying on someone else to take me to the pharmacy (because I'm flippin' blind!) I needed it done before the end of the day. So we go on Saturday, thinking, oh, they should be there by now. But alas, nothing. No call, no nothing. So I call the answering service and they put a call through to Dr. Shukri. He calls me back and pretty much tells me there's nothing I can do but call back on Monday and talk to Mary (his nurse).
So I did. I called back. Did I get Mary? Nope, I get the idiot receptionist again. She says she may be able to call it in for me. So I give her some time and she calls me back while I'm in the loo and offers to let me come and pick the prescription up (*begins to bang head on table and keyboard*). This is the same girl I've been telling that I'm stuck in another state, blind and cannot just pick it up. I explain it to her again and she says she'll take care of it for me. Playing the waiting game again I call bi-mart. Still nothing. I begin my last round of steroids (which is taking forever today because of how fast my blood is pumping) and call the home infusion line and let them know I'll be removing it today. I tell her the situation with the prednisone (or lack thereof) and she offers to call their office and try to speak with someone. She calls, and you guessed it, they are closed! Unbelievable. She did fax something over to them so it's my hope that they'll get it while they close up and finally take care of it. Don't they know you never stress a person with MS out like this? It's mostly fear driving it all, fear that I won't get the prednisone and I'll crash. It's a real fear that anyone in my situation could have, especially when they aren't getting the level of treatment they need to survive. I understand I'm in another state, that I'm not a priority, but I haven't had the chance to even unpack anything out here before this menace of a disease hit me.
I didn't ask for this. I never wanted to be sick and have to deal with doctors and nurses and IV lines and idiot receptionists. I understand it's my cross to bear through life but man, is it really asking to much to have people do what they are supposed to do? To relay priority messages? To do their job to ensure the health and care of their patients?
I'm frustrated and my heart is beginning to speed up from the steroids. I just need to breath. I can't help but thinking that if Taft was still there this would never have happened. He doesn't drop the ball. I wish there were more PA's out there like him. He's my superhero.

My thoughts are not empty and hollow atm..

2011-01-22T21:40:00.000-08:00

I'm a little scared that I haven't had any sign that my vision may recover. What makes it worse is when I look on the internet and read all the stats about the recovery chances at this level of progression. I know.. that someday I'll probably be completely blind, since with each flare-up I manage to get optical neuritis, but I'm not ready for it yet. Please, don't let it be now. I'm so fearful that I'll never be able to see out of my left eye again and that I won't be able to drive.
Chrissey would say I worry too much, but I think in this matter, I have a right to worry. What can I do if I go blind? How depressed I would be if I could never gaze on beautiful works of art or some cinematic piece? I know it happens to people, but after 27 years of seeing, I don' think I could cope. It would more than likely mean flushing a lot of my dreams down the toilet. There's one dream I don't think I could ever give up though. I think, despite it all, even if I was blind and unable to function with my own limbs, I'd still try to go for my dream of being a disability lawyer. I want to help people like me. I want to help others inflicted with MS so that they may have the chance to live a better life than I ever could have! I want to make sure that these people are treated fairly in the workplace, unlike I was by certain higher ups that I won't mention here. No one should ever feel like they aren't good enough because they were born with a disease like MS.
I think the real problem lies in the fact that someone knows at least one person with MS. They then say, oh yeah, my Great Aunt Shirley had MS and lived a long, healthy life. Hunny, I'm not your Great Aunt Shirley. The thing with MS is it affects people differently. You can't group all MS sufferers into one large category and expect the definition to fit. It doesn't work like that. For me, I have to keep my immune system weak because the moment it gets too strong I know I'm in for a relapse. Therefore, I catch every germ you bring to the office. I catch every bug that goes around. I'm a connoisseur of sickness! Mention what's going around lately and more than likely I've had it, far worse than you will ever get it.
But, I don't think I'm jaded. Although, I will say, I do shrug it off a bit as if it were my lot in life that I have to face. But beneath that shrug, I'm terrified. Terrified of where I will be in five years, in ten years and if I'll make it another twenty years. I know that if I ever find myself stuck in a bed, using a respiratory to breathe and just existing I will not allow myself to continue that way. Never. I don't think that's anyway to live. That's one of the reasons I moved to Oregon is because I know it's a state that allows assisted suicide for those who are capable of doing it. I want to be able to have that option! The option of choosing to live my life how I want to, not how the government says I am to live.
I didn't mean to go into such a dark place with my thoughts, but this is what I think about when I'm given a moment alone. A moment of self reflection like I had so much of when I was on the road. Sure, I want to be like everyone else and have the freewill to do anything I want, but unfortunately, I'm not able to at the moment. The thought brings tears to my eyes that I'm so bound by this disease. When will I ever get my chance of freedom? I thought moving to Portland was my chance at discovering myself and my freewill but how quickly that all can change in a day or two.
Bah, perhaps I'm just being foolish or throwing my own pity party. It's not like I mean to, but this just happens to be the place where my mind wanders too. I also desperately want to wash my hair and take a shower, but with this IV in my arm, it's not the easiest of chores. Therefore, I'll stick with being scummy!
Scummily yours,
Desiree

Quick post to pass the time

2011-01-22T12:23:00.000-08:00

I'm writing this from my blackberry so it won't be a lengthy blog post, merely an update. I had a brief scare with my IV site and had to have a nurse come out and take a look at it. It was just a wee bit of blood from bumping it so I didn't have to have a new IV put in. Still no improvement in my lack of vision, except I've fooled myself into believing I can see lights, just a glimmer, but that's positive. I had to reschedule a few interviews for next week and I'm hopeful it won't damage my job prospects. I'm putting a lot of faith into my vision being restored but I've begun to work on a backup plan in the case it does not. If I remain blind in my left eye, I believe I will have no trouble getting disability. In fact, Chrissey's mom gave me the number of an agency that may be able to help me get food stamps and medical insurance until I get a position somewhere. Anywho, right now we're at the dentist while Chrissey gets a tooth extracted and after that we're off to look at houses. Good times ahead!

Mmm.. salted peanuts means happy kiddo!

2011-01-21T15:47:00.000-08:00

I'm so munching on salted peanuts at the moment. Does a body good. Or at least a body filled with solu-medrol. Day two of my infusion went without an problems, which I'm very happy about.
I'm still completely blind in my left eye, yet, I can't complain because I feel still relatively good. I feel like a could dance a jigg!
It's rough having not had an IV infusion in a while because you forget all the nasty side effects. With a healthy dose of steroids you get: the sweats, salt and sugar cravings, bloating, break-outs, insomnia, restlessness and hunger. It's annoying but in order to get my vision back I'll do anything at this point.
I'm excited for tonight, it's a calming night of pizza and movies with people I love. I'll try to write more later, but my life just isn't that fascinating at the moment.

A slight hiccup in an otherwise unbumpy road.

2011-01-20T21:39:00.000-08:00

It's frustrating. I have the potential to have everything I've ever wanted but yet as soon as I begin to walk down a new path MS has to rear its ugly head and remind me that I'm sick. At least, so far, this has been a mild relapse, it just serves to remind me that I can do anything IF I remember that I'm sick. I consider myself a strong woman with strong dreams. Heck, the whole thing that started this blindness in my left eye was the completion of a 3300+ mile trip across the country solo, in seven days! A HUGE task for any MS sufferer to be taking, especially alone where the complications of MS can set in at any moment. Sure, I felt fatigued but not once did I feel sick. Hell, even now I feel fit as a fiddle, well with the exception of being completely blind in my left eye. But not once did I think this was going to happen especially when my life was turning out right for a change.
So I have to reflect on my life and make some decisions. Some serious, difficult and hard decisions that will have an impact on the rest of my life. This little hiccup has reminded me that I'm not invincible, that I'm not cautious enough. It sucks that I have to bandaid up everything in my life just so I don't cause myself to get hurt or worse. Normal people walk through life and take their bumps and bruises, why can't I? Now, I don't feel sorry for myself, it's just when this sort of thing happens you begin to question a lot in your life. Am I making the right decision, for me? Am I doing what's in MY best interest? So long I've put others before myself. But wasn't the whole point of this journey to regain what I'd lost, to become dependent on myself versus taking care of a spouse, a house, etc. I was supposed to regain my freedom from being the worrier, the stressed out budget manager. I came here to find myself and what did I find? The real me, the MS sufferer who needs to learn how to take care of herself. I need to take my meds, I need to eat healthy, I need to exercise and most importantly, I have to live each day for me. No one else. Just me... and maybe my cat.
If there's one thing I've learned on this journey is that it's okay to be alone, it's okay to sit down at restaurants and eat alone. It''s okay to go into stores and shop just for oneself. It's okay to lose yourself in your thoughts. And although I was alone for just a short while, I was never truly alone. I had those who loved me, who checked up on me and guided me when needed. I now have a support system here who all unanimously agree that I should check into getting disability. That I would be better off without the stress of working full-time and that I would get the proper insurance I need as well as the potential of my schooling paid for. Then, when completed, I could practice law on a part-time basis and help others who have MS get on disability and fight for their rights. I could truly do my dream job of being an advocate for people with MS and all sorts of disabilities! I could give my life a real sense of meaning. But even if I don't, I'm still okay with just being me.

A Year Later...

2010-10-05T12:23:00.000-07:00

It's a year later after my last relapse and it's a time for reflection. For those of you who have been wondering where I've been, I've been swept up in work, school and a bunch of family situations, so I'm apologizing now for not updating nearly enough.

I met with Taft, for my six month visit. Of course, given the release of the latest pill, Gilenya, for MS, I was full of questions. He said there are just too many long term side effects (heart and respiratory), that he wouldn't be putting me on it and that I could never take it if I wanted to get pregnant. His word is enough for me and I'm satisfied with his explanation. What does this mean? It means I go back to doing my rebif injections twice a week and just deal with the side effects and site reactions.

I also asked him about the latest research and findings involving the narrowing of neck veins and it's relation to MS. Frankly, there hasn't been enough research to know exactly *what* this means and secondly, there have been a multitude of complications and even death, eep! But, he said I shouldn't discount it yet but also not to take the first road trip to Buffalo to sign up for the treatment.

I have to say, I am a bit sad though. As of Nov. 1st he is leaving to take a teaching position up at St. Joe's. While this is a great opportunity for him, I feel a bit sad because it's a shame to be losing him. He is a rare breed in the medical field, you can tell he's a person that really cares about his patients and takes the time to learn all he can in order to answer our questions and provide us with the most up-to-date and accurate information. I'll personally miss him because he has a great bedside manner, is charming and really makes me feel at ease, so much so that I can be incredibly honest with him.

How have I been? I've been doing just fine. I, for the most part, have completely bounced back from my last relapse and don't need a walking device for assistance, well other than for times when I'm walking a lot. I've been so incredibly busy with school it's almost consumed all of my free time outside of work but I've only got 16 credits to go, so it's all worth it. Besides that, I've decided to go on to grad school in order to get my J.D. and become a disability lawyer and advocate, especially for patients with MS and those who have been discriminated against by their employer (despite protection from the FMLA Act).

So, here's my question to you all, how are YOU doing?

Updates

2009-10-26T04:31:00.001-07:00

It's been quite some time since I updated. I've been busy with online classes and physical therapy appointments.

I was starting to feel like my old self again until two days ago. I woke up extremely cold sensitive on my right side and my balance is a bit off which is the usual sign that something is about to go wrong. Thankfully I have an appointment with the Shuk on Tuesday.

I'm getting nervous because I was thinking I'd be going back to work on November 2nd but this might set me back a bit. At least I'm able to breath again though.
Blah!
Maybe something is trying to tell me I shouldn't return to work. I may have to get that number for the lady who helps with disability.
We'll see!

Shedding a little light on the subject

2009-09-24T21:37:00.000-07:00

I wanted to take this opportunity to share with you some images. I'm not an expert on reading MRIs and I'm really not sure what I'm looking for. When I received my first series of MRIs (the old fashioned prints) I really wanted to be able to see what the doctor was talking about. I asked him to point the lesion out to me. Now, this is an MRI image off the disk they gave me the last time (9/10). This is the only lesion I can positively identify because it was my very first.
It is located on my c-spine and it's the bastard that started all my troubles!

I wanted to show you images of the lesions on my brain but I'm really not sure what they look like. I think for the sake of research and to be completely knowledgeable I will have to harass Taft into giving me a play by play. These lesions are the most important for diagnosis. In order to have a confirmed case of multiple sclerosis there has to be lesions present on your brain (the first flare-up only presented an image on my c-spine, but they treated me for MS because if it looks like MS, feels like MS, more than likely you've got MS).

The reason I'm having a hard time recovering from this last flare-up was because of the size of the lesion. I know nothing about how lesions on the thoracic spine presents itself. I can only assume based on my c-spine lesion that it's that giant white mass staring back at me. I can also assume that that's why I'm having such a terrible time with the dreaded MS hug!

When I find out more from Taft at my next appointment (in October) I'll be sure to ask him to explain to me exactly what it is that I'm looking at. I think in order to truly understand this disease you have to be a sponge! You have to absorb as much knowledge as you can in order to truly be able to take a stand against this disease!

A Play By Play

2009-09-24T13:24:00.000-07:00

I met with Taft, Shukri's PA and it was a very informative appointment.

By far the most important thing we discussed was the option of hand controls for my car. I told him how I had talked to the physical therapist and I wanted to look into getting hand controls for my car. He said that it really isn't something they just put in your car and send you off on your own. He is putting me in contact with Rochester Rehabilitation Center which works with the DMV and trains you on how to properly use assisted driving devices and how to deal with a disability while out on the road. I've looked at the website and it looks like a great program so I look forward to hearing from them and getting started on the road to driving freedom.

He mentioned that this particular lesion was very large and that's why I haven't noticed any improvement as of yet. He wants me to continue the prednisone until it's all gone and also continue on the rebif injections. He remains optimistic that the rebif should begin to work soon (he said it takes about an average of three months for it to begin to be effective).

I brought up the returning back to work and he pretty much agreed that I'm not going to be ready to return on the first. He wanted me to stay out an additional TWO months! I told him I'd meet him half way and he'll reevaluate my condition towards the end of next month and decide how much longer I need to stay out from there. He feels that between the fatigue, leg symptoms, the fact that I haven't had any physical therapy yet and the breathing issues it's a bad idea for me to return to work so soon. So, my dear friends, it looks like you'll be stuck with my constant updates for a bit longer while I continue on the road to recovery.

He asked me how my bladder was doing and I immediately began talking about the lack of bowel movements (I know.. I only heard what I wanted to hear). He gave me a sample pack of amitiza, a drug used to treat chronic constipation in adults. I don't know if it's working yet as I just took the pill but we'll see shortly!

Another interesting thing we discussed is the issue of health insurance reform. He thinks I should become an advocate since I know first hand the type of hoops you have to jump through just to get a condition treated or to get the medication I need. It's an idea but with everything else that is going on, I just don't think I have the time or am in the right frame of mind to deal with that right now.

Other than that I spent the rest of the afternoon with my dad, Kel and my parent's Boston Terriers, Pepper Anne and Tabitha. We rode around in my dad's new vehicle and it was nice to get out and about for a while. The only problem now is that I'm exhausted and needing a nap!

By the way, I'm starting physical therapy next week, not this week. My bad!

To the Shuk's and Aqua Therapy

2009-09-23T18:33:00.000-07:00

Tomorrow is my first day of physical therapy. We're starting off with aqua therapy in the shallow end of the pool because I'm still experiencing the MS hug. My consult with the physical therapist was Tuesday and although the therapy looks promising his thoughts weren't. He told me I want to look into getting hand controls for my car in the event that I may never be able to drive again in the traditional manner. Are you kidding me? First off, I hear it's expensive and secondly, what, what, what? I'm sorry sir but I have more hope than that. It is getting a little tiring depending on other people to take me here and there though. I miss the freedom of hopping into my car and driving off into the sunset if the mood strikes me. Life with MS, I will never get used to this.

I also have an appointment with the Shuk's PA tomorrow and we're supposed to reevaluate how I'm doing and whether I will be able to go back to work on the 1st. I'm a little apprehensive about going back, I just wish I had a little bit more time to do some more physical therapy first. In the house I'm okay walking a little bit without my walker, although I'm still a bit clumsy on my feet but walking more than 10 feet and my legs are dragging behind me, I can't breath and I just want to take a nap. The fatigue is going to kill me. My dad is going to the appointment with me tomorrow and I might ask him to sit in the waiting room because I'm afraid I won't be honest with the Taft if he's there. I'm afraid he'll be ashamed of me if I tell the doctor I need more time before I'm ready. It's bad enough that I had to up my baclofen because the spasms are so bad when I wake up in the morning.

I've barely left the house since I got out of the hospital. The first day I was free I ran some errands with Kristen but since then I've really only gone to the Christmas Tree Shop twice (to pick up a couple sets of curtains since my neighbor's grandkids have taken to peeking through the sheers in my living room) and spent two days hanging out on Kristen's couch so I haven't really had the opportunity to gauge how I'm really feeling.

TMI time! I'm still having issues with constipation, which is another thing I will have to address when I meet with Taft tomorrow. It's an embarrassing issue and I hate having to bring it up with him but I've read the complications online and it's a bit scary. I used to be pretty regular, up to twice a day, now I'm lucky if I go once every four days. I feel like I'm incredibly bloated and it's an awful feeling. Blah. We'll see what he has to say. Sorry if that grosses anyone out, just trying to keep it real. Besides, my hope is that this blog may be helpful to someone else who may be newly diagnosed and not really sure what to expect. I know what that's like, being frightened and not really sure if what you were feeling or going through is because of the MS. Just so you know, you aren't alone. <3

Tomorrow I wind down to three prednisone pills a day and I'm feeling like I'm not where I should be at this point. Usually by this time I'm dancing around, feeling full of energy and almost back to my old self. Not this time. More and more I'm beginning to feel that most of these symptoms will be permanent. I know it's because of the location of the lesions this time but it absolutely sucks! I want to feel normal again. I want the MS hug to go away and I want to be able to walk. When I was out in public the other day some little boy laughed at me because I walk funny and I'm using a walker. I had to resist the urge to find the boys mother and slap her silly for not teaching her child not to laugh at the disabled. I can't say my feelings were hurt, because they weren't, I know children are cruel, I just thought it was inappropriate. I see people who stare and give me weird looks but I don't take it to heart. People gawk at what they don't understand. If this disease has taught me anything is it's okay to cry, it's okay to feel sorry for yourself, at first, but eventually you have to wake yourself up and be strong because it's the only way you are going to get better!

A Rebif Tweak

2009-09-20T02:15:00.000-07:00

I had a bit of a tweak out this evening when I went to take my rebif. I had convinced myself it was going to hurt really really bad. I'm not even sure where this thought came from. Maybe it was because both Kel and Kristen were watching me. I hyped myself all up. I had originally planned on injecting it into my arm but the fear of that quick pinch freaked me out so much that I ended up injecting it into my belly. I don’t know what the fuss was all about- I didn’t even end up feeling it! Maybe it’s the collective sucking in breath by those around you that gets you going!

There’s still no real progress from the initial symptoms, except that the band around my waist doesn’t feel as tight, or perhaps I’m just getting used to it. I still have trouble breathing if I bend over or if I’m in the bathroom with the shower running (heat). I’m using my walker out in public and I’ve noticed that for about ten minutes my walking is okay (better than what it was) but after that it all goes down hill and my left leg begins to drag behind me.

When I stand up I tilt to the side. I think it’s because of the tightness in my midsection. It keeps me from really getting comfortable!

Sorry for the fragmented post. I’m exhausted but the fear of waking up with muscle spasms again has me quivering in fear. I can deal with pain in normal circumstances but any MS related pain has me calling foul!

That odd symptom I seem to only get when I’m on solumedrol came back in full force today! The last time I went to the endocrinologist I had mentioned to her that I seem to only get my period after I’ve had a round of IV steroids and sure enough after this round I’m at it again! There HAS to be some connection between the two (adrenal fatigue? Cushing’s?) but everyone just chooses to ignore it. It’s just odd that with everyone else the solumedrol makes their period go MIA and it makes me have it (and it’s the only thing that works too, otherwise I’m barren!). Maybe I should get a second opinion. The body is an interesting piece of work and I can’t help but think that the MS, the PCOs and this whole solumedrol/period thing are all related! I’m sure there can be one main cause for everything and as soon as I figure out what it is I’ll be cured and I can go back to living my life!

All that’s missing is some progress.

2009-09-18T23:04:00.000-07:00

I just wanted to type up a quick update before I hobbled off to bed.

I woke up this morning with muscle spasms in my left leg (charlie horse), one right after the other. I was alone and it was the most dreadful thing I’ve experienced in quite some time! Literally as soon as one would die down enough for me to breath the next would come and I’d have to start the process all over again. If you’ve never had one, you’re lucky, because they are the most painful things you will ever experience.
This went on for about a half hour (not exaggerating) and finally subsided after twisting my leg this way and that, finding the right combination to end the flow of tightness.

Other than that there really hasn’t been any changes. I am trying to take it easy, I spent most of the last two days at Kristen’s house, watching TV. I’m resting, it’s what the doctor wanted, it’s the least I could do!

Musings of the day..

2009-09-16T14:48:00.000-07:00

I'm not sure how I feel today.

In the past I've realized that by the last dosage of the solumedrol I'm usually feeling pretty good. That's not the case this time. I've come to the realization that some of these symptoms might be for the long term. This scares me.

I've come to acknowledge the fact that if these symptoms are now permanent for the rest of my life I will be forced to change my life in so many ways. I know that working might not be an option since the high doses of medication I'm on just to get me through the day make me so dizzy and hazy I'm no good to anyone (you should have seen me trying to do my homework earlier). I know that I will become a burden on everyone I love and hold dear. I may never be able to drive again, which, I can't even fathom that right now without feeling this horrible ache inside my stomach. I have to get real with myself. I've been in denial for so long and all it got me was a stiff wake-up call and a tumble in the office earlier where I couldn't get up without almost breaking something. I have to face the facts. I have MS, and it's a progressive disease and the fact that this is my second flare-up in a year is an indication that something is NOT right in my life. I just have to figure out what that is!

I'm stuck on the couch for right now. I really scared myself earlier when I fell and there was no one here to help me up. When I went to stand my legs were awkward and in the wrong position and I could have broken something, where would that have left me? I would have been stuck there, in pain (if I even felt it), on the floor, waiting for someone to notice that I didn't answer a phone call or I didn't answer an incoming text. This is my reality. This is something I have to come to terms with.

I'm not used to depending on other people. It's killing me. I have this urge to pick up and straighten up around here but every time I stand my legs sway and I'm forced back down into my seat. I can't deal with this. I never pictured at 26 I would be contemplating going out on disability, permanently, and looking into getting a Help Link System installed in my home (thankfully because Kel works for the company they said we could have it for free). I'm torn. I feel if I go out on disability I will forgo so much and Kel and I will have to scrape by for the rest of our lives. That's not fair. I also feel if I do that then there will be so many people who will be disappointed with me. You have to earn a living, you shouldn't live off the system. I don't want to be one of these fat lazy slobs sitting home on disability with no hopes for the future and no real indication of what they want to do with their life. This wasn't the plan. There is a monkey wrench shoved into the middle of it and I need to come up with an alternative solution.

There are two things I know for certain: I have to get counseling and I have to have a serious sit-down with someone who knows all about the way disability works and weigh all my options. As I said, there is a true chance here that I may never fully recover use of my legs, or they may surprise me but either way, I HAVE to be prepared! I wish there was a chance I could work from home, this way I could sit in my living room, a few feet from the bathroom and type, type, type in the comfort of my own Pjs and still be an asset to the company. If only, if only, it were that simple!

A curious case of the ‘why me’s?’

2009-09-14T23:45:00.000-07:00

Now that I’m home and everyone has gone home or gone to bed I really feel the need to have a bit of a breakdown, if I may.

I’ve had to wear a brave face for the doctors and nurses and family and friends and really all I want to do is cry! My physical therapist told me today that it’s great to see someone who is so optimistic but in reality I’m screaming on the inside!

I have to stay strong for Kel because I don’t think he could really handle the thoughts inside my head; I have to stay strong for Kristen because up until recently she didn’t know that this is a progressive disease and I’m going to get worse. I have to stay strong even for those family members who still deny something is wrong even though they have heard it straight from my doctor’s mouth.
Where is the source of my strength!

I’m constantly stuck between two people who I love deeply but hate each other. Causing me stress. I have family members who are in denial. Work just doesn’t understand. I don’t even think I truly understand the severity of my situation.

I just want to pack up and head out to where no one knows me and no one can find me and lock myself away. I think that’s truly the only way I am ever going to avoid stress.

I know for a fact that Kel aggravated the situation with the little stunt he pulled last week and I know even now I’m much worse since I came home from the hospital. If they can’t listen to the doctor telling them I need to avoid stress then I really don’t know what will work at this point. How do I decide between the people I love and my health?

I don’t think any of this is really fair. I don’t think any of this is even right.

I have to bring myself to the point where I stand up in my big girl pants and say ‘enough is enough! I won’t let you drag my health through the mud any longer!’ I’ll do that just as soon as I find a pair in my size…

Last day in the hospital...

2009-09-14T08:26:00.001-07:00

Today's my last day in the hospital and I'm somewhat relieved but at the same time I'm a little apprehensive about going back to my real life. My doctor has decided he wants me out of work for two weeks so nothing will get in the way of my physical therapy and outpatient care (they like to call me a non-compliant patient because I never do follow-up visits or physical therapy because I'm usually rushing back to work). I have the paperwork signed for temporary disability parking and I will be getting a prescription for a walker as soon as my discharge paperwork is set in motion.
I hope I've been a good little hospital patient. I'm not used to being waited on and I have a hard time turning that control over. A lot of the nurses like to joke with me that I do a lot of their work for them. I just explain to them that I know there are patients who are worse off than me so I'm okay with being independent. I've got to master it all on my own for when I go home anyways so it's great practice.
I'm still having issues with the MS hug, especially when walking so the walker will be a great improvement, this way if I lose my breath I'll be able to clutch the walker for support instead of falling into the wall or grabbing the nearest object. Physical therapy is a bit annoying, but it's a necessary evil if I want to be able to walk normal again. I've noticed some improvement since doing my laps even though my left foot is still dragging.
I dropped my course load for school down to twelve credits instead of fourteen in the hopes that I will be able to concentrate better. I'm almost tempted to contact most of my professors and let them know that I may be experiencing a bit of MS brain fog over the next few weeks while I taper off on the prednisone but I'm not sure if I should share that information. What would you do?
The good news is my blood glucose readings were far better than they have been (152) despite Kelly sneaking me in some sugar yesterday. This might be on the verge of TMI, but the only really bad side effect from the solumedrol is the constipation! I have yet to go and I have been here since Friday morning. I feel like I'm going to explode. Despite the constipation the scale down the hall that I passed last night while doing my laps says I've lost some weight so I'm really excited about that. I wish I could tell if my pants were loose but I can't right now because of the hug everything feels tight. I plan on sneaking over to the scale in a few minutes just to get a final weigh in before I boot scoot out of here.
I looked at myself in the mirror today and my face is red, I mean really red, but I don't seem to have any puffiness going on, which is a good thing, who needs a moon face when you are already fat!
I have to say that out of all the times I've been on solumedrol this has to be the easiest time I've had. Maybe it was because of the hospital stay. I was able to be comfortable, I didn't have to constantly get up and take care of things around the house and I was just able to get well. I think I prefer this method, despite my obvious lack of being cooped up. It was also nice not to have to worry about cleaning, pets, cooking, bills, etc. I just wish I had a copy of my budget here with me because I have no idea what bills I'm supposed to be paying in the next two weeks. I guess I will just have to play it by ear and see what happens. Doing it all by the seat of my pants! That's the way to live life with MS I suppose!

Final Evening in the Hospital

2009-09-13T20:29:00.000-07:00

It's 11:30 pm. and I'm partially awake. Kel and I got into a little tiff today at the hospital, I don't know if it's the roid rage or just the frustration of still being here. It could also be the restricted diet they have me on. I'm having the worst cravings for sugar and caffeine but unfortunately the solumedrol is causing me to have really high blood glucose levels. Yesterday I clocked in at 232 and today it was 181! Despite my PCOs my glucose levels are usually pretty normal (fasting glucose is in the low 80's) so I'm kind of shocked by how the steroids have really affected my body.
I guess that's why it's good that I'm in the hospital because it's opening up the possibility of getting to the root of all my troubles! Too bad there's only one more day left.
My head is swimming right now. Kel snuck me in something with sugar and now I've got a serious headache so I'm hoping this isn't some diabetic shock symptom. Blah! I don't know what to do.
There is some form of silver lining.. I think I've managed to lose some weight! I guess restricted hospital diets aren't too bad, just not my cup of tea. I've never managed being told what to do very well so maybe it's just an act of rebellion.
In other news I have several people, the Shuk (my neuro) included, telling me my best bet would be to go on disability now that I have two new lesions on my spine and that because it's a progressive disease I really need to cut the stress out of my life. Unfortunately my biggest stressor in my life is my job. Who knows what I should do?

Hospital Day Two

2009-09-12T13:45:00.000-07:00

Again with the brain fog! If the solumedrol wasn't helping I would be cursing it to the high heavens. The good news is I can breath, except when I start moving around.

I had a little physical therapy today and could barely get down the hallway because I'm so stiff! I hate this. They have me on a restricted diet (if you can even call hospital food, real food), it's so disgusting. I'm just ready to go home now. Is it Monday yet? I'm so bored and lonely and I miss my fur kids -.-

Blah. Now the tears start.

My doctor came to see me today and he said for some reason my glucose levels are through the roof, even though my readings last month were normal. I really can't help but think there has to be some relationship between the MS, PCOs and these readings they've been getting.

I'm also dying for a diet pepsi, would someone like to come and sneak one in to me, I'll give you my first born!

Kelly left hours ago to attend to some things at the house and I really wish he hadn't left me here alone. Depression+alone= disaster. This sucks!

Give me some caffeine and sugar already or I'm going to turn into one grumpy girl!!

At the hospital

2009-09-11T13:16:00.000-07:00

I'm at the hospital for a few days.

I woke up yesterday and felt the cursed MS hug! I felt like there was an 800 pound elephant on my chest and I couldn't breath. My walking had also become more difficult to the point where I needed help. I called my PA and he told me to go straight to the emergency room. I went, had a horrid experience with a horrible doctor and was given the wrong instructions.
I was called by my doctor this morning and he yelled at me, wondering where I had gone because I guess I was supposed to go back to the ER after I had my MRI. I went to the doctor's office and he told me I had two new lesions on my thoracic spine and that's why I was having the trouble breathing and walking. They admitted me into the hospital today and now I'm hooked up into the IV steroid, so hence the 'roid head fog! More updates later on....

Day Seven

2009-09-07T08:39:00.000-07:00

So far the prednisone is doing nothing to correct the lack of feeling in my legs. I'm not sure what to do at this point.

To further describe how numb my legs really are: I'm not very good at balance and coordination right now and I managed to fall back and step on a sharp corner of my dog's crate, I didn't even feel it! I didn't even realize I was injured until I felt something wet drip and slide down my other foot! It's missing a whole chunk! I'm sure I could break a toe and never even realize it, scary!

I've gained back the weight I lost due to some unplanned barbecues over the weekend. It's okay, I've started over already.

Day Four

2009-09-05T07:57:00.001-07:00

I drop down to five pills of the prednisone instead of six. I'm a little concerned because I'm still experiencing severe numbness in my legs and walking is very difficult for me. I know that I won’t let this disease get the better of me but it’s all a bit frightening.
My husband isn’t helping matters any either. I know it’s difficult for him to see me like this but he seems withdrawn a bit more than usual and he’s picking silly fights with me for no apparent reason. I don’t know how much more I can take. Where was the man that took care of me? I really need his support and comforting right now.

I started taking two 500MG Metformin yesterday and this morning my stomach is dearly paying for it. I know part of it is because I went out to dinner last night with a friend and Kelly and I ate a bit more than I should of. We had a blast though so I don’t mind dealing with the repercussions this morning. Life’s too short to yell at yourself for having a good time.

It’s Saturday and the Farmer’s Market is open. I desperately want to go because I’d love to take some pictures of the brightly colored produce and perhaps pick up some freshly cut flowers to perk the house, and myself, up. Unfortunately Kelly is still in bed and I’d rather not go by myself, considering my current state. Ah, what is a girl to do? I hate that this disease limits me so!

Day Three

2009-09-04T12:32:00.000-07:00

It's 3:30 p.m. in the afternoon and I have yet to take my prednisone. I slept in until about 2 p.m. which is crazy because I never ever do that! Just goes to show my body really needed it. I went to the store with Kristen to pick up another movie tonight since I'm pretty much confined to the house until my legs get a bit better.

MS update: Legs are still crap.. Webbles wobble but they don't fall down, unless they are me!
PCOs update: Metformin still, don't know if it's working. I pigged out yesterday while having a "poor me" attitude so I probably set myself back a bit. Today's a new day!

Fear

2009-09-03T21:00:00.000-07:00

Tomorrow my rebif should be delivered to my house and I can't help but feel a little scared. When I was on copaxone I had the most horrible side effects and I don't know if I'm ready to go though something like that again. I'd love to hear from fellow MSers to learn about your experiences with rebif.

Update, day two on prednisone

2009-09-03T15:19:00.000-07:00

Metformin update: I've managed to lose 4.5 pounds since last Friday and I can't help but think it's all thanks to the Metformin. Hope this is a sign of what's to come.

Worked a full day today and I'm exhausted. I took my prednisone around 10 a.m. and managed to hold off on the hot flashes and sweating until about one. I haven't noticed any other side effects yet but I'm sure they will make themselves known to me on my fourth or fifth day.
The numbness hasn't died down yet and I'm wondering how soon it will go away. I really need my legs back thank you very much.

It's hard not to let yourself get discouraged. I just have to remember that I was a normal person before both of these diseases and I'm still that same person, if not just a bit stronger. My heart and thoughts go out to you fellow PCOsers and MSers. It's a tough world, we just need to remember to stay strong!

Enter the sweats

2009-09-02T17:00:00.000-07:00

I took the prednisone when I came home today from the doctors office and now I'm sweating up a storm! I swear, I've soaked through the outfit I'm wearing! How do you fellow MSers cope?

Bad news

2009-09-02T13:14:00.000-07:00

I went in to the doctor's and I am indeed having a flare-up, fortunately it's not a bad one so I'll be able to take oral prednisone, a high dose for three days and then begin to taper off. I’m worried about the side effects. Last time I was on prednisone it brought back my period and made me get moon face and really bad breakouts, let’s hope this time is different. Thankfully tomorrow is my last day of work before a four day weekend and I’ll be tapered off the high doses before I go back to work. Hurray for small miracles.
My doctor also gave me a prescription for Vitamin D because my blood test revealed my levels were really low.

PCOs update: I have been on Metformin since Friday and I’ve actually begun to lose a pound here and there which is great because I’ve been in the same weight range for the past three years or so. I can’t really complain about any side effects yet because so far they have been pretty easy to deal with but then again I’m only on 500MG once daily and will be starting on two 500MG pills a day starting Friday. I imagine that’s when the side effects will come rolling in.

My current MS symptoms are: Tingling, pins and needles feeling in my left side and right foot. It’s almost split down the middle of my body and my left side feels like dead weight.

To the Shuk!

2009-09-02T09:48:00.000-07:00

I called in to work today because it's beginning to get very painful to move. The numbness/tingling is traveling up my right leg now and I'm terrified that if I wait one more day it will also be in my whole right side as well. I have a 1:30 p.m. appointment with my doctor and I'm very scared at what he is going to say. Wish me luck you other MSers!

Ah, relapse, how I loathe thee!

2009-09-01T20:38:00.000-07:00

I went to my primary physician today because over the weekend I had taken it upon myself to move some particularly heavy furniture, by myself, no less and on Monday morning I awoke to my entire left side asleep! Currently I am extremely cold sensitive and am experience the pins and needles sensation through my upper back down to my toes. After my doctor examined me she said that there was no way it was caused by an injury and stated I needed to get to my neurologist's office as soon as possible.
I have to call their office in the morning.
They aren't going to be happy with me.

There always has to be a beginning...

2009-09-01T20:34:00.001-07:00

Genetic predisposition.

I curse those words.

Somewhere along the line I managed to not only inherit Poly-cystic Ovarian Syndrome but also Multiple Sclerosis! Just goes to show I come from a fantastic gene pool!

All sarcasm aside there was a point in my life when I was carefree and didn't know I had either of these problems. I was 13 and I was waiting anxiously for my rite of passage into womanhood. All of my friends were already blessed with aunt flow and here I was not a tampon in sight! Suddenly, as if my prayers had been answered I got my period for the first time... and only time... at least until I was put on birth control at the age of 17 when a nurse practitioner told me I had baby boobs and spoke the words that would forever change my life, well, at least until I received my confirmed MS diagnosis, I had PCOS. The ultrasound confirmed I had cysts on my ovaries and at the time I probably had convinced myself I would die from this awful sounding disease! So here I was at 17, a pimply senior in high school armed with birth control and sanitary pads, I was finally a woman!

Fast forward a few years.. about five or so give or take a few months. I had just finished up a horrible horrible argument with my husband when I began to notice a tingling almost burning sensation in my left arm. It was a horrible sensation and one that seemed to be spreading day by day. Finally after convincing myself to go to the doctor's (after I had found one in the area) he had decided it was a pinched nerve and shrugged me off. After several different referrals he decided that there was truly something wrong as now my eyesight was beginning to dim and my walking impaired and I could no longer feel most of my body. I was finally referred to a neurologist who at first, after discovering there were no lesions on my brain, said it was not MS and thought it was Devic's disease. After several more tests and several more MRI's he located the lesions on my spine, did a spinal tap and discovered it was not Devic's that it truly was MS, it was just in the beginning stages.

So enter now. After seeing my OBGYN (my beloved nurse practitioner was no longer with the office) I was told there was nothing they could do for me and I was on my own to battle the PCOs. I knew they were wrong! I knew that there were more options available to me! I spoke to my primary physician, a wonderful woman, and she suggested I see an endocrinologist. Her office set up the appointment and after having several pints (I swear!) of blood I have been placed on metformin to see if it will bring back my MIA periods and help me shed some weight along the way.

Update on the MS, since my diagnosis in January of 2006 I have had one flare up in May 2009. Currently I am not on any medication other than baclofen for the spasms and provigil for the tiredness, which I only take as needed. I was taking a copaxone injection daily but the side effects were to severe. Right now I'm in touch with a company called MS Life Lines and I will be starting Rebif as soon as I receive it, hopefully I have better luck with this drug than the last.