Weak

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

A little self-hate. :/

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

-D

Ugh. Again? Really?

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

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

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

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

Sometimes.. your body gives you clues

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

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

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

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

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

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

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

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

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

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

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

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

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

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

-Desiree

If you thought normal dating was complicated…

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

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

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

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

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

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

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

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

Ciao
-Desiree

Depression and Anger

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

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

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

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

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

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

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

With all my love and encouragement-
Desiree

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

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

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

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

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

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

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

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

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

Seeking a doctor who cares enough to listen.

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

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

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

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

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

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

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

-Desiree

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

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

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

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

The way things were.

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

The reason? Recovery.

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

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

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

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

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

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

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

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

-Desiree

Seattle MS Walk

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

Thanks!

I've been terrible!

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

Keeping busy is the best way to be.

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

Living each day.

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

Accomplishing stuff, a MSers dream.

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

I love the quiet days.

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

I wish I could just understand.

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

The sufferer conundrum.

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.

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.

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?

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

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.

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.

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.

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..

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

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!

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.

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.