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