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!

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.

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!

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.

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

A Year Later...

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?

To the Shuk's and Aqua Therapy

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

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.

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!

Last day in the hospital...

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

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?

Day Four

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

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!

Update, day two on prednisone

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!

To the Shuk!

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!

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...

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.