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

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.

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.

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.

A Play By Play

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

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

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

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

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

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

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

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

To the Shuk's and Aqua Therapy

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!

Musings of the day..

I'm not sure how I feel today.

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

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

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

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

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

Day Seven

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

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

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

Day Four

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!

Enter the sweats

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

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.