A funny thing happened to me in Philly the other day.... That sounds like the beginning of a joke but the truth is it wasn't funny at all and more scary than anything. Once again a new symptom reared its ugly head.
My right knee swelled up and stiffened to the point where it became quite difficult and painful to walk. And of all days I had a long walk ahead of me. I was walking down Broad Street, Philadelphia celebrating the Phillies' National League Division win. Go Phillies! It was an amazing experience except for the minor annoyance that was my knee. Why now? *sigh*.
If I didn't mention it before I'll say it again, I have a very loving and accepting boyfriend. I didn't want to ruin this experience for him and didn't want to complain so kept right on walking. This symptom however was a very visual one and when he felt how swollen it was compared to the other knee we hobbled ourselves right over to IHOP and had some dinner or breakfast depending on how you look at it. The festivites were winding down anyway and the police were out in full force blocking streets anyway.
I have experienced some slight knee swelling in the past but never to the degree that I had that night. Usually it was more of a full feeling above my knees that would go away in a couple of hours without any pain sort of like if your ankles swelled up or something. Well, I went home and spent the next day almost completely off my feet. The swelling went away and my knee popped a few times. I did some online research and discovered that a swelling above the knee might be bursitis. Those succeptible to getting it include those with thyroid disease. I had suspected as such. I kind of in the back of my head thought it was an autoimmune flareup or something of the sort. The question is what exactly does it mean? Does it mean that I need more Synthroid because my hormones are once again out of whack? Does it mean that my antibodies are finding new tissue to destroy migrating from my throat to my knee? Is it the start of a more sinister autoimmune disease like rheumatoid arthritis?
I need to ask my doctor on the next visit. I do see my Endocrinologist for a blood test in a couple of days. I'll mention this to her and see what she has to say.
Saturday, October 24, 2009
Those Pesky Vitamin and Mineral Deficiencies
This is a comment that was left for the posting "Lookie What I Found" dated 10/19/09. It contains a lot of great information regarding vitamin and mineral deficiencies and how they contribute to symptoms. It also stresses the importance of advocating for your own treatment. Thanks so much Kit in St. Louis and all the best! :)
"Hi Mel,
I saw your post over at Dear Thryoid and thought I'd drop you a line.
I noticed that you have some of the same problems I had for a really long time. I used to have awful achiness and was in constant fear of migraines and muscle spasms every time I moved or put any challenge on my back muscles or lifted my arms (God forbid lift an iron skillet).
Turned out, yet another lovely autoimmune disease was responsible. I have pernicious anemia which prevents me from properly absorbing B12. B12, you probably know, is in abundance in meat, dairy and eggs, but if your stomach isn't producing "intrisic factor," you won't be able to make it available to your tissues.
Unfortunately, the B12 test isn't very sensitive, it has a 50% rate of false negative. If you ask to be evaluated, insist on getting an MMA test, too, which will be high if you have a B12 deficiency. You want your B12 level to be around 800, which is optimal. Unfortunately, most labs say you're okay if your B12 isn't over 200. Crazy!!
Good luck, hope you aren't feeling too lousy today. Kit in St. Louis"
"Hi Mel,
I saw your post over at Dear Thryoid and thought I'd drop you a line.
I noticed that you have some of the same problems I had for a really long time. I used to have awful achiness and was in constant fear of migraines and muscle spasms every time I moved or put any challenge on my back muscles or lifted my arms (God forbid lift an iron skillet).
Turned out, yet another lovely autoimmune disease was responsible. I have pernicious anemia which prevents me from properly absorbing B12. B12, you probably know, is in abundance in meat, dairy and eggs, but if your stomach isn't producing "intrisic factor," you won't be able to make it available to your tissues.
Unfortunately, the B12 test isn't very sensitive, it has a 50% rate of false negative. If you ask to be evaluated, insist on getting an MMA test, too, which will be high if you have a B12 deficiency. You want your B12 level to be around 800, which is optimal. Unfortunately, most labs say you're okay if your B12 isn't over 200. Crazy!!
Good luck, hope you aren't feeling too lousy today. Kit in St. Louis"
Tuesday, October 20, 2009
Monday, October 19, 2009
Take Two Pills and Call Me in the Morning...
There are a lot of people (and even some doctors!) who believe that once you take the required meds prescribed for your ailment you should feel absolutely perfect again. You are "cured!" This is sadly not the case for those suffering from an autoimmune disease or any chronic illness. There is often no cure and symptoms are only managed sometimes.
I take a .112 mg Synthroid pill religiously every single morning upon waking. It makes up for the hormones that my dying thyroid no longer makes. My own body is destroying it. I sometimes wonder why my body chose to attack the thyroid gland as opposed to another organ or body part. The hormones help keep everything functioning pretty normally and I definitely see the difference back from when I was first diagnosed. My hair no longer falls out in clumps leaving a bald spot right in front, I don't feel as deathly fatigued as I once did, my skin is no longer extremely dry, my heart, kidneys, liver are functioning normally and I managed to lose a bit of weight which I put on just thinking about food when my thyroid functioning was way down. I also am no longer extremely depressed. I do have my moments though and sometimes still feel like I can't concentrate well. I feel downright stupid sometimes and I'm certainly not. I graduated at the top of my class with honors in College despite everything. I sometimes feel achy. My muscles hurt. I lift my arm to reach something or to wash my hair and ouch. I feel extreme fatigue some days and there's no logical reason for it. I feel dizzy out of nowhere and get migraines for days.
I suspect the days I have these terrible symptoms my immune system is at peak performance wreaking havoc on my body. Sneaky. Very sneaky. I'll have lapses of time, usually a couple of weeks, where I can't believe how good I feel and deny that I'm even sick. And then the good times will be snatched away from me once again. It's not fair and I pine for them to return. Then again I've learned to view it as my downtime where I rest up and ponder all the things that I'll do when I feel up to it again. It's the cycle of life I suppose.
I take a .112 mg Synthroid pill religiously every single morning upon waking. It makes up for the hormones that my dying thyroid no longer makes. My own body is destroying it. I sometimes wonder why my body chose to attack the thyroid gland as opposed to another organ or body part. The hormones help keep everything functioning pretty normally and I definitely see the difference back from when I was first diagnosed. My hair no longer falls out in clumps leaving a bald spot right in front, I don't feel as deathly fatigued as I once did, my skin is no longer extremely dry, my heart, kidneys, liver are functioning normally and I managed to lose a bit of weight which I put on just thinking about food when my thyroid functioning was way down. I also am no longer extremely depressed. I do have my moments though and sometimes still feel like I can't concentrate well. I feel downright stupid sometimes and I'm certainly not. I graduated at the top of my class with honors in College despite everything. I sometimes feel achy. My muscles hurt. I lift my arm to reach something or to wash my hair and ouch. I feel extreme fatigue some days and there's no logical reason for it. I feel dizzy out of nowhere and get migraines for days.
I suspect the days I have these terrible symptoms my immune system is at peak performance wreaking havoc on my body. Sneaky. Very sneaky. I'll have lapses of time, usually a couple of weeks, where I can't believe how good I feel and deny that I'm even sick. And then the good times will be snatched away from me once again. It's not fair and I pine for them to return. Then again I've learned to view it as my downtime where I rest up and ponder all the things that I'll do when I feel up to it again. It's the cycle of life I suppose.
A Little Understanding Goes a Long Way
I spoke to a dear friend today who has both PCOS and diabetes. It's her birthday. While I am extremely lucky to have some really amazing friends and a very loving and accepting boyfriend, she is the only one who I can say truly understands what I go through because sadly she experiences many of the same symptoms I do.
We have good days and bad days. Some days it's hard to move and get even out of bed. Other days we're confident, have quite a bit of energy and are ready to take on the world. Some days all we can do is think about all the things we want to do and have to do and realize that our will is not enough to overcome our physical self. And we get frustrated. And we feel bad about ourselves and blame ourselves for not doing enough. We can't understand why. We hate it. We feel like losers. We also feel bad about telling others how we truly feel and try to sugar coat it by saying "It's not that bad. No big deal. I'll be ok." We feel like we're complaining. We keep a lot inside for fear that we will come off as complainers to others. We shouldn't have to feel ashamed or afraid to open up or be frustrated. It is what it is.
We didn't choose to be ill and feel this way. I'm still trying to accept it. I often still feel in denial of the whole thing and think I'm supposed to be superwoman and do everything I want to do and then some without getting tired. How dare I? What's wrong with me? I am too hard on myself. I see myself in my friend and want what's best for her always. I would never judge her or tell her she's not doing enough. Why am I then so hard on myself?
We have good days and bad days. Some days it's hard to move and get even out of bed. Other days we're confident, have quite a bit of energy and are ready to take on the world. Some days all we can do is think about all the things we want to do and have to do and realize that our will is not enough to overcome our physical self. And we get frustrated. And we feel bad about ourselves and blame ourselves for not doing enough. We can't understand why. We hate it. We feel like losers. We also feel bad about telling others how we truly feel and try to sugar coat it by saying "It's not that bad. No big deal. I'll be ok." We feel like we're complaining. We keep a lot inside for fear that we will come off as complainers to others. We shouldn't have to feel ashamed or afraid to open up or be frustrated. It is what it is.
We didn't choose to be ill and feel this way. I'm still trying to accept it. I often still feel in denial of the whole thing and think I'm supposed to be superwoman and do everything I want to do and then some without getting tired. How dare I? What's wrong with me? I am too hard on myself. I see myself in my friend and want what's best for her always. I would never judge her or tell her she's not doing enough. Why am I then so hard on myself?
Sunday, October 18, 2009
Sometimes You Need a Kick in the Butt
I watched the documentary "Crazy Sexy Cancer" today. It was sad in some parts, yet uplifting and empowering in others. I thank my lucky stars I don't have cancer and applaud all the brave souls who battle it every day. My mom had thryoid cancer and thankfully she is a survivor. She caught it due to environmental factors. I get a thyroid sonogram every once in a while to make sure everything's ok as well. Prevention is always key.
The movie definitely brought about some very good points that anyone with a chronic illness can apply as well. The main one is being your own advocate. Keep searching for that doctor that truly listens to you and doesn't brush you aside making you feel like you're a hypochondriac. I've sadly had too many instances where this happened both prior to my diagnosis and occasionally still to this day. Make sure you do as much research as you can on your particular disease. No doctor has the time to keep you completely abreast of how you can live your best life nor do they know what's truly best for you. They are swamped with other patients and besides who knows your own body best but you?
I also totally agree with eating as healthfully as you possibly can. The documentary's star, Kris Carr, tackled a macrobiotic diet and it worked beautifully for her even though it was a bit difficult to stick to at times. I'm just trying to make small changes by including more fruits and vegetables in my diet and cutting out the processed sugary foods. I do feel the results so far to some extent. I was able to get rid of a migraine last week by drinking ginger tea with pieces of ginger root in it. Exercise is also helpful but in times of extreme fatique this can be the furthest thing from your mind. I'm still trying to tackle this one.
Most of all don't ever give up on yourself. Sure, we all have moments when we feel sorry for ourselves but we can all take a cue from one woman in the documentary who suffered from breast cancer, Oni. She actually set a timer for 10 minutes a day where she allowed herself to feel sorry for herself, get some tedious chores done etc. and then once the timer rang she got back behind the computer and resumed her life as a writer. The ultimate message of the documentary is to live your life to the fullest and don't take anything for granted. Sometimes you need a kick in the butt like cancer or a chronic illness to show you the way.
Ah The Mystery...
I have been toying with the idea of starting a blog about autoimmune disease for some time now. I love to write and felt I needed to express my thoughts and feelings on this subject hopefully reaching others who have had similar experiences. I have Hashimoto's Thryoiditis and was formally diagnosed in 2006 even though looking back I can see that I have exerienced its symptoms for far longer.
I also got tired and was bewildered at how many people had no idea what the thyroid gland was and what it did. We ALL have one, male and female alike! Indeed, even some doctors I have visited seemed to marvel at the elusive thyroid gland. Did they skip that chapter in medical school? Even in my own schooling other organ systems were extensively covered such as the cardiovascular, skeletal, digestive... yet there was only a mere mention of the endocrine one. How mysterious.... Don't even get me started on autoimmune disease. Auto what?
I find it outrageous that certain other diseases seem to get top billing over the more widespread and deadly ones but that's a whole other blog isn't it? I read somewhere that the reason that other diseases, in particular autoimmune ones, don't get the recognition that they deserve is that they are not sexy. Hmmmm I guess no one wants to hear about fatigue, hair falling out, deathly palor, depression, constipation which are usually experienced on a daily basis, mind you. Yes, I can see why most people would rather not talk about these less than glamorous symptoms.
There have been countless times over the years where I searched the net for people who were going through the same thing mostly to prove to myself that I was not alone. I could relate to some and found lots of helpful advice along the way. I always felt that the search was the most exhausting part of all however. Why are autoimmune diseases so underground? Again, the mystery.... Maybe it's like a secret club. Most of us who have one might not even look sick all the time. Then again, when we do we REALLY do. I can't tell you how many times I suspect someone looking at me for the first time probaly thought I was a drug addict. Uggh. It's a silent, underground, covert operation of a network of diseases... shhhh. Well, I for one think it's time to speak up about it and bring about awareness.
I also got tired and was bewildered at how many people had no idea what the thyroid gland was and what it did. We ALL have one, male and female alike! Indeed, even some doctors I have visited seemed to marvel at the elusive thyroid gland. Did they skip that chapter in medical school? Even in my own schooling other organ systems were extensively covered such as the cardiovascular, skeletal, digestive... yet there was only a mere mention of the endocrine one. How mysterious.... Don't even get me started on autoimmune disease. Auto what?
I find it outrageous that certain other diseases seem to get top billing over the more widespread and deadly ones but that's a whole other blog isn't it? I read somewhere that the reason that other diseases, in particular autoimmune ones, don't get the recognition that they deserve is that they are not sexy. Hmmmm I guess no one wants to hear about fatigue, hair falling out, deathly palor, depression, constipation which are usually experienced on a daily basis, mind you. Yes, I can see why most people would rather not talk about these less than glamorous symptoms.
There have been countless times over the years where I searched the net for people who were going through the same thing mostly to prove to myself that I was not alone. I could relate to some and found lots of helpful advice along the way. I always felt that the search was the most exhausting part of all however. Why are autoimmune diseases so underground? Again, the mystery.... Maybe it's like a secret club. Most of us who have one might not even look sick all the time. Then again, when we do we REALLY do. I can't tell you how many times I suspect someone looking at me for the first time probaly thought I was a drug addict. Uggh. It's a silent, underground, covert operation of a network of diseases... shhhh. Well, I for one think it's time to speak up about it and bring about awareness.
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