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!
Showing posts with label PCOs. Show all posts
Showing posts with label PCOs. Show all posts
Saturday, August 20, 2011
Friday, July 8, 2011
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
“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
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
Saturday, July 2, 2011
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
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
Friday, July 1, 2011
The way things were.
I’ve been rather terrible at keeping this blog updated despite my promises in the past to be better at it.
The reason? Recovery.
I’ve been working at embracing my life and pushing away all the stress. I’m really, quite honestly, living life one day at a time.
The good news: I’ve completely recovered from my last relapse. Thank goodness! I have no lasting side effects, except for random bouts of major fatigue. I know I’m very fortunate and I’m thankful for all of your prayers and kind words during my ordeal.
The other good news? I landed a job, was hired on as permanent after only a month and was given insurance at the beginning of my third month. Unfortunately, because of my relapse in January, I can’t get treatment for my MS quite yet but I’ve been told I will be able to in November. So I just have to hold out until then. I’m sure wonky things are going on in my brain and spine but I’m just trying not to worry about that right now. Stress never does us any good, no matter if you are healthy or not.
I’m also in the process of trying to change who I am as a human being. In the past I’ve let stress rule me, I’ve been bossy and I’ve just been unhappy. I think embracing the idea of living life one day at a time is really helping with this. I do have my moments where the depression pulls me under, but it’s so rare now it’s like a blue moon. Moving to Portland really was the best decision, for me. Some might argue that that decision was selfish but after spending five years or more taking care of others instead of myself I think I get to be selfish! Now, I’m happy. Not the pseudo happy where you plaster a fake waxy smile on your face but the deep down, ray of sunshine kind of happy. I’m grateful for the life I get to live now and all of the wonderful people I’ve surrounded myself with. I’ve decided that if you make me unhappy, if you are overly negative, chances are I’m going to cut you out of my life. It may be a slow and painful process but negativity only breeds negativity and I, for one, don’t need that in my life.
Despite not being able to take charge of my MS at the current moment in time, I am going to tackle my PCOs. I have an appointment with a OBGYN/endocrinologist/fertility specialist who has gotten some great reviews on PCOs websites on the 29th. I may have to reschedule it due to a previous engagement but I at least have put my foot in the door.
The next step in my life is filing for divorce. Right now I’m trying to get the funds together to make this a reality, but in all essence, it’s something we both want so when the money is available it will be a really simple process. I’ve also started seeing a really great guy who just wants me for me. There’s no pressure and he makes it easy.
Life with Jan and Chrissey is also perfect. We have our moments now and then but otherwise we get along splendidly. Chrissey is like the sister I never had (no disrespect to my actual sisters, but the age difference between didn’t really lend itself to you being a positive influence in my life). I call my lovely ladies out here my “Oregon” family and I love them all dearly.
I’m off to put the positive karma out into the universe. You all take care and don’t be a stranger!
-Desiree
The reason? Recovery.
I’ve been working at embracing my life and pushing away all the stress. I’m really, quite honestly, living life one day at a time.
The good news: I’ve completely recovered from my last relapse. Thank goodness! I have no lasting side effects, except for random bouts of major fatigue. I know I’m very fortunate and I’m thankful for all of your prayers and kind words during my ordeal.
The other good news? I landed a job, was hired on as permanent after only a month and was given insurance at the beginning of my third month. Unfortunately, because of my relapse in January, I can’t get treatment for my MS quite yet but I’ve been told I will be able to in November. So I just have to hold out until then. I’m sure wonky things are going on in my brain and spine but I’m just trying not to worry about that right now. Stress never does us any good, no matter if you are healthy or not.
I’m also in the process of trying to change who I am as a human being. In the past I’ve let stress rule me, I’ve been bossy and I’ve just been unhappy. I think embracing the idea of living life one day at a time is really helping with this. I do have my moments where the depression pulls me under, but it’s so rare now it’s like a blue moon. Moving to Portland really was the best decision, for me. Some might argue that that decision was selfish but after spending five years or more taking care of others instead of myself I think I get to be selfish! Now, I’m happy. Not the pseudo happy where you plaster a fake waxy smile on your face but the deep down, ray of sunshine kind of happy. I’m grateful for the life I get to live now and all of the wonderful people I’ve surrounded myself with. I’ve decided that if you make me unhappy, if you are overly negative, chances are I’m going to cut you out of my life. It may be a slow and painful process but negativity only breeds negativity and I, for one, don’t need that in my life.
Despite not being able to take charge of my MS at the current moment in time, I am going to tackle my PCOs. I have an appointment with a OBGYN/endocrinologist/fertility specialist who has gotten some great reviews on PCOs websites on the 29th. I may have to reschedule it due to a previous engagement but I at least have put my foot in the door.
The next step in my life is filing for divorce. Right now I’m trying to get the funds together to make this a reality, but in all essence, it’s something we both want so when the money is available it will be a really simple process. I’ve also started seeing a really great guy who just wants me for me. There’s no pressure and he makes it easy.
Life with Jan and Chrissey is also perfect. We have our moments now and then but otherwise we get along splendidly. Chrissey is like the sister I never had (no disrespect to my actual sisters, but the age difference between didn’t really lend itself to you being a positive influence in my life). I call my lovely ladies out here my “Oregon” family and I love them all dearly.
I’m off to put the positive karma out into the universe. You all take care and don’t be a stranger!
-Desiree
Sunday, March 20, 2011
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!
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!
Thursday, January 27, 2011
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.
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.
Wednesday, January 26, 2011
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.
You see, it all started when I was in my early teens. I received my period once, from the time I was 13 until I was put on birth control when I was 17. That was the beginning of my journey but there's been a few bumpy parts along the way. Bumpy parts, that just don't make any sense.
Prednisone makes my body menstruate. That's right. Of all the things the doctor's have put me on including birth control, metformin, estrogen, etc. the one thing that allows me to have a cycle is the prednisone. At this rate, it's the only thing that works. I would consider it a fluke if it happened once or twice while on prednisone but so far it's happened during every one of my treatments.
I've said this before, but I can't help but feel it's all connected. I've sometimes considered the idea that it may be cushing's or some related disease but nevertheless, it always points to hormones. Perhaps it's some sort of adrenal crisis? I haven't the slightest idea. My main goal, when I get insurance out here, is to see a specialist, someone who is actually interested in these weird symptoms and will listen to me when I tell them something is wrong.
I think it all comes down to discrimination from doctor's. Whenever they see an overweight person walk into their office they immediately think of this person as unhealthy, a hypochondriac and just in need of losing a few pounds. I really wish doctor's would treat the symptoms and the body, not just my shape.
The sufferer conundrum.
I recently came across a blog written by a fellow MSer that could have easily been written about me. It was the condemnation of using the terms “MS sufferer.” I use these two terms together, at the frown of my fellow blogger, because I have my own reasons for using them. I consider myself a sufferer because, at this time, it's something I do suffer with, just like I have to suffer with annoying in-laws or noisy upstairs neighbors. It's the annoying pest that whistles in my ear while I go about my daily business and I suffer with it, because it's the hand I was dealt. One man's journey is another man's suffering.
It almost seems petty to attack something so silly as a term, or as it's put elsewhere, a label. It reminds me of those days in high school where we protested the labels we were given by society while others embraced it. Who cares? If I choose to consider myself a sufferer, that's my choice just as it's your choice to use a different phrase. Heck, I even call myself a PCOs sufferer, because, you would too if you've ever spent a half hour in front of the bathroom mirror plucking chin hairs with tweezers you can't even see.
Quite honestly, I picked the phrase up from a medical professional and it was just something that stuck. Instead of attacking the phrase, offer some other coined term we can use instead. Instead of picking apart labels, wouldn't it make more sense to present a united front? Remember, we're the source of available, real life information for the newly diagnosed.
It almost seems petty to attack something so silly as a term, or as it's put elsewhere, a label. It reminds me of those days in high school where we protested the labels we were given by society while others embraced it. Who cares? If I choose to consider myself a sufferer, that's my choice just as it's your choice to use a different phrase. Heck, I even call myself a PCOs sufferer, because, you would too if you've ever spent a half hour in front of the bathroom mirror plucking chin hairs with tweezers you can't even see.
Quite honestly, I picked the phrase up from a medical professional and it was just something that stuck. Instead of attacking the phrase, offer some other coined term we can use instead. Instead of picking apart labels, wouldn't it make more sense to present a united front? Remember, we're the source of available, real life information for the newly diagnosed.
My face is a volcano.
Or at least it looks that way. No, volcano is the wrong word, more like moon-faced. The small steroid pimples have begun to pop up all over, mostly in noticeable areas like above my lip (ugh) and around the corner creases of my mouth. I just spent a futile ten minutes scrubbing my face in a feeble attempt at trying to control my acne with a face wash. There's not much you can do when it's literally your body trying to rid itself of the toxins created by the medication. My face is a poster campaign for rejection.
I'm trying to decide, at the moment, what's worse. The acne or the hirsutism (facial hair) sweeping across my chin. I bet my body is loving feeding off the steroids so it can start new cultivations of hair colonies in abnormal places, like perhaps a patch right at the base of my spine or the fatty hump curving between my shoulder blades. It all has a sense of poetry to it, doesn't it? I should just be smart about it and just let it grow into a beard instead of spending the time to sit and pluck each hair. Then I'll fasten down my breasts and wear flannel. Hey, I bet it could really fly here. No need to even take testosterone, I make enough of it on my own.
I'm trying to decide, at the moment, what's worse. The acne or the hirsutism (facial hair) sweeping across my chin. I bet my body is loving feeding off the steroids so it can start new cultivations of hair colonies in abnormal places, like perhaps a patch right at the base of my spine or the fatty hump curving between my shoulder blades. It all has a sense of poetry to it, doesn't it? I should just be smart about it and just let it grow into a beard instead of spending the time to sit and pluck each hair. Then I'll fasten down my breasts and wear flannel. Hey, I bet it could really fly here. No need to even take testosterone, I make enough of it on my own.
Sunday, September 20, 2009
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!
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!
Sunday, September 13, 2009
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?
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?
Friday, September 4, 2009
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!
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!
Thursday, September 3, 2009
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!
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!
Tuesday, September 1, 2009
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.
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.
Subscribe to:
Posts (Atom)