Thursday, November 20, 2014
I'm in the waiting room and there are four women in here, including me. Two of them are around my age and one is elderly. We're all well dressed, quiet, unwilling to make eye contact, and a bit uncomfortable. We also all keep our gazes down.
It makes me wonder what they're here for.
Family Feud is on the TV and all of them are now talking a bit, commenting on it. I'm not though. Now I feel even more strange. At least there was a tentative kinship in silence.
I think group therapy, if there becomes one, will be difficult. But still I wonder what their stories are.. what struggle they need help with.
I'm babbling.. nervous I suppose. One of the women is from Atlanta, she's definitely chatty now that the Feud broke the ice. And as much as I get curious why they're here, I wish everyone would be quiet. I'm afraid they're going to expect me to join in.
Those were texts messages from yesterday, sent to Tony while I waited to be called back to my mental health therapy session. The clinic actually calls that department - Behavioral Health. I don't like that term though, it makes me feel like a naughty child.
I wonder if pretty much everyone struggles with going to see a therapist. I know I do. The only way I can get my head into it (pun intended) is to think about mental health being just like physical health - if either or both are unwell, they need a doctor.
I've had three therapists in two years. The first one was not a good fit, to say the least, and it nearly put me off ever going again. Only the fact that I knew I needed help dealing with being sick made me try again. I liked my second therapist, a female Psychologist, but she ended up leaving the practice a couple months ago. So, here I am with the third therapist and she's someone I could see myself being friends with were circumstances different.
As we were walking through a maze of hallways to reach her office yesterday, she pointed out this little nook with a couple chairs, a small table of magazines and said to me, "You can wait in there the next time you come, if you like. It's a little more secluded and quiet."
I guess after only one session with me, she was either the Jody-whisperer or she noticed that while the three women looked like long lost friends by this time, I was staring determinedly at my phone, trying to conjure up a mute button that would work on them.
Talking with strangers is difficult for me and in a setting such as that, all of us being there for a reason that is probably private and uncomfortable to begin with.. well, it's not much different than having your legs hiked up and feet in stirrups while Dr. Awkward checks over your lady-business. Thus, I was truly grateful when the therapist offered me the peace of that closet sized waiting room.
Liking your therapist is a pretty big deal. Just as we need our physical doctors to listen to our symptoms, to believe us even when those symptoms sound crazy, and to realize we know our bodies better than they do, so do we need our mental doctor to simply let us talk and validate the sadness and anger that comes with disease.
She asked me what I need from her and the sessions and I replied, "Just for you to listen. Be the person that doesn't love me, the person that I don't feel the need to protect from how awful being sick is. Let me be selfish in this room, let it be about what I'm going through because out there, I'm fiercely proud, I'm still trying to hide it the best I can and I put everyone else first."
Tuesday, November 4, 2014
I love Pinterest. It's like an online mall of everything in the world.. for free. Perfection.
If you look off to your right, you'll see a Pinterest button that if clicked, will take you to my Fibromyalgia board. It has funnies, knowledge, helpful tips, research, compassion and everything in between. But every now and then, I want to bring that board here to my posts with some of my favorite memes. Here are a few for the week:
If you look off to your right, you'll see a Pinterest button that if clicked, will take you to my Fibromyalgia board. It has funnies, knowledge, helpful tips, research, compassion and everything in between. But every now and then, I want to bring that board here to my posts with some of my favorite memes. Here are a few for the week:
Friday, October 31, 2014
Two months ago, I got sick with what I thought was your run-of-the-mill stomach flu. It began with exhaustion. I was so tired I could barely stand up. I'm no stranger to that because Fibromyalgia carries with it an ass kicking level of tired. But this was different. I couldn't push past it and keep going.
Next were the burps that smelled like rotten eggs. Over and over, they wouldn't stop. My stomach bloated and became hard as a rock while slowly cramping and twisting. And then came the diarrhea - the kind where you can't get off the toilet for five hours and your legs are paralyzed even as your butt cheeks cramp. I had extreme nausea and then the vomiting began. It was painful and violent, the retching racked me until I thought I had broken ribs.
Three days later, things seemed better. I had one good day and then it returned, more vicious the second time around. I went to the ER, pretty sure I was dying but positive that I was dehydrated yet again. I begged them to put pain medicine in my IV and asking for that is unusual for me.
The doctors did blood work, X-rays, and all manner of other tests between my two ER visits and when finished, could only say, "We think it's some sort of viral thing." I ended up sick like that for weeks - it would come on suddenly, excruciatingly and a few days later, I would be better for a little while.
At the third or fourth ER visit for dehydration and pain, the doctor asked if I had ever been tested for Celiac Disease. I had no idea if I had or not. All of you with a chronic illness will understand when I say that I've had so many tests for everything under the sun to finally give me the diagnosis's I now have & while I am pretty savvy about my own health issues, nobody can recall every test ever done.
The next day, I was being tested for Celiac. It came back negative. The Gastroenterologist told me that he suspected a condition called Gastroparesis. He said he thought the original virus was so severe that it partially paralyzed my stomach. Basically, every time I ate something solid, it digested so slowly that it would begin rotting and fermenting until those gross burps began. Then, my body would expel the food by whatever means necessary.
After being put through a battery of tests for Gastroparesis, it was confirmed that I have it. The doctor told me it could be temporary until my stomach fully healed. Or, it could be permanent and lifelong. I have a list of things wrong but I work hard to remain as independent and optimistic as possible. That said, this diagnosis both scared and absolutely pissed me off. A person can only take so much.
I deal with a level of pain that defies words because of Fibromyalgia. When it flares, it's a soul sucking vacuum of agony. But the Gastroparesis? It's a different and more awful kind of sick. There's something very wrong with the hinges of your jaw popping as your mouth tries to open itself wide enough for the launch of masticated ham and gravy.
I'm hoping this is temporary. That my stomach is just cranky and sore from the virus but will buck up soon and welcome the buffet at my favorite Chinese place. I'm hoping that I don't have to live the rest of my life with another illness because it makes me sad if I do.
Thursday, October 30, 2014
As anyone with Fibromyalgia knows, the cold is devastating to our pain levels. Not only the cold but precipitation too. We feel the snow and ice as if we were outside (naked) making angels in it even when we're curled up in our favorite recliner and buried under blankets.
I don't think any of us look forward to winter but for me at least, there is a positive side. I make myself be less busy and relax more. It's time to catch up on reading, one of my most favorite things to do. If my Epub files were actual books, I would have piles of them in every corner. I pull out projects to start and hopefully finish. (I'm a bit of a procrastinator.)
The 'To Do' list that I've been adding to for months beckons me. Things like going through computer folders to clean out and organize. Dozens of pictures wait for me to say, 'Awwww', and print them for the pegboard in my office. Homemade Christmas present ideas are written on scraps of paper piled in a desk drawer.
It's time now.. time for hot coco, jammies and slippers, buttered popcorn, movies and TV shows to catch up on. It's time to write again.
Sunday, August 3, 2014
I've had the same best friend for 34 years. Just looking at that sentence makes me blink the shock of not only a friendship that has spanned decades but that I'm as old as I am - 43. Where do the years go? That's such a cliche question and yet, as cliches go, they are popular because they're true.
This friend is meaningful to me, as one might suspect. The history between she and I is full of laughter, tears, joy, pain and growth as women. We have seen each other through some of the best and the worst times in our lives, as girlfriends do for one another.
I sit here and recollect a hundred special memories. I could call her right now and say things like - Go Fish & Old Maid. Skittles taste testing. Marlboro menthol, Joe biting Kendall, wrecking your Chevette, Arsenio Hall, Beaches, Nora bar, kicking Betsy's ass, Baby Got Back and that silver necklace, Alan Jackson, and so much more.
Random words and we would laugh until we cried or start a conversation we left unfinished six months ago, as if we hung up yesterday. That's the kind of friends we have always been.
She is the one person (besides my younger brother) that was there for my childhood and that's important to me for reasons I won't go into right now. She could call me in the middle of the night asking me to unlock my door and listen to her until dawn and I would. I have. I can't think of much that I wouldn't do for her. On the flip side, she has done so much for me too.
And with all of that said, I feel abandoned by her through these last few years of illness. I know I could call her right now and say, "I need to talk about being sick.", and she would listen. But I also know she wouldn't really want to hear about it. She wouldn't honestly try to understand what I was saying or how I feel. I know that deep down, she would think I should 'quit whining and toughen up, get on with life', without realizing that's the point - it's impossible for me to get on with my old life or be the old me.
When we do talk on the phone, she tells me about her relationship problems and I listen, sometimes for long periods of time. I offer opinion or advice if she asks or if I think she's receptive to it. I tell her often the things I think are special about her, her best qualities. I give her my empathy, love and never make her feel like less for crying. I show her my faith in her strength as a person. I try to uplift her, to let her know she always has me in her corner.
That's what I need from her. It's what I have needed from her since I was diagnosed five years ago but especially now as the Fibromyalgia and some of the concurrent issues progress and become more debilitating. I feel like she willingly give that without being asked, as I would and have for her. That is not the case and as time goes by, she and I talk less and less and rarely see one another. I miss her, this girl that I learned to put make up on with.
Monday, July 28, 2014
I never want to invalidate anyone else's illness, injury or pain, however temporary or not. That said, I do have this type of response now and then. I never say it aloud and I chastise myself for thinking it at all but I believe it comes from a very normal and human need to be healthy, and jealousy when we know we won't be.
I try to remind myself that there are others who have it far worse than I do and to be grateful for the blessings. However, I also have to give myself permission to have those moments of anger, sorrow and yes, even self-pity. It's okay. It's necessary because we can't be strong all of the time. We need to express everything, even the ugly parts.
I admit, even if it's only here on my blog, that sometimes when people complain of a minor illness, I want to shake them and scream. I want to tell them they have no idea. That they know nothing, Jon Snow. I want to beg them to switch bodies or lives with me, even for one week, so I can remember what it feels like. I'll gladly take their cold or stomach flu for six days if I get just one that's free of pain.
The flip side of that coin is that whomever switched lives with me would have to live mine for a week. I know we may think that we would like those that do not believe or understand our disease to live with it for a week or even a day so they finally have some empathy and compassion. But, I don't think any of us could actually do it - knowingly inflict this upon another person. I couldn't. Not even for one day of freedom.
Fibromyalgia is a war with no end. Winning is only found in getting up each day to fight another battle.
Monday, July 21, 2014
I was in a flare last night while talking with my Love and basically told him exactly what this meme says - sometimes, the pain is so extreme that we have nothing left but to sit still and only blink when we have to.
Thursday, July 17, 2014
This book is incredible - you will laugh until you cry and then you'll just cry. I highly recommend it and cannot wait to see the movie.
As for this quote, it reminds me of something Patrick Swayze said in the movie 'Roadhouse' - "Pain doesn't hurt." Well, I miss you and your work, Patrick but I'm going to have to disagree with that statement. Pain does hurt. Pain makes me cry. And sometimes, the pain is so bad that I laugh hysterically. I don't want to know what the alternative is.
Thursday, July 10, 2014
I've been drawn to sad books for the last few months. If they have anything to do with illness and/or death, or the spirituality of being either of those things, I'm reading it, studying the message and how it might be similar to my life. I kept feeling bad about it though, like I was being morbid or I somehow didn't have the right to think about death because my disease isn't terminal.
I couldn't tell those closest to me that I was reading those books. Nor could I tell them what I was learning and taking from the stories. If I were already judging myself as being morbid, what would they think? Would they think I had some kind of obsessive curiosity or worry that I was suicidal? Would they pity me? How could I tell any of them the truth about why I was reading them and risk making them sad?
Then there came a point where I really wanted to tell them about those books. I wanted to show them quotes and explain how the words made me feel, the ways in which they enlightened & comforted, knowing I wasn't alone in any part of my own story. People have traveled the path of various illness and disease since time began. The unifying moments of the human race are birth, love, loss and death.
I want to tell those I love this one thing, first and foremost - My life has been everything I ever wanted it to be and I have accomplished and been successful at what I chose to be important - my children and being a mother to them. Loving them without conditions or limits, without restraint and judgement, and with every fiber of my being so they would know through the entirety of their own lives that they matter.
I want to tell those that love me that it's normal for anyone who is sick for a long time to think about death. I have not been given an expiration date by a doctor - "six months to a year at most." I'm not counting down the seasons, wondering if this will be my last birthday or Christmas. And yet, when you feel pain every day and your body ever so slowly deteriorating, when you lose your quality of life by inches and missed moments, when you look in the mirror and watch yourself fade, you search for acceptance and peace. But first, you grieve.
Being chronically or terminally ill comes with blessings - the time to plan and to tie up loose ends, time for grief and acceptance, realizing, with a sharper clarity, what's important. Time to do all the things we've been putting off because life got in the way of living. Time to tell our stories and somethings, hoping to be remembered after we are gone. Time to find our God. And, time to say goodbye which is the most important of all.
These are a few of the things I'm learning as I read those books. This is my journey and they are a part of it. I'm meant to read them, to learn and to share it because we grow all the way to the end.
Wednesday, June 18, 2014
Monday, June 16, 2014
We also have problems with our own body temperature. It's like our internal thermometer is broken and one minute we feel feverish and the next, teeth chattering cold. Okay, maybe it's not minute by minute but honestly, it -is- quite close to that much fluctuation, that fast. And.. it's awful. Not as awful as the violent pain, IBS, migraines, spastic bladder and other concurrent issues, but still, it's frustrating.
I hope this day finds all of you with tolerable pain, a balmy 75 degrees with blue skies, a breeze and a glass of sweet tea at hand.
Monday, June 9, 2014
Monday, June 2, 2014
When the pain is terrible and I just want to curl up in the recliner and close my eyes, put headphones on and block out the world until medication kicks in and takes the sharp edges off agony, this is one of the songs I most enjoy listening to.
He's a new name, an incredible, brilliant talent and I hope you enjoy his music as much as I do.
Thursday, May 29, 2014
It's been too long since I've posted here and while there are reasons (which I'm going to list), it doesn't really excuse the lack of blogging because I -could- always find just five minutes in a day to say something meaningful. Or, even if I just post a 'meme' that is funny or inspirational, something that I saw and liked and maybe gave me a boost when I needed it.
With all of that said, here are the reasons, and what has been going on with me:
1. I've been in the flare from hell. Not just a physical flare either. It's been this devastating exhaustion that makes me sleep within seconds, every time I sit down.
2. A lot going on with family - baby shower, birthday party, graduation parties. And while I truly enjoy a good party with those I love, we all know the price people with Fibromyalgia pay to attend them or even to be a part of hosting the event.
3. I sleep in late simply because every bit of sleep I can get is a -good- thing. Thus, it feels like the days go by so quickly and they're over without my having sat here and written a word.
4. It seems like I'm always doing something, big or small, for someone else and it ends up eating more time than I thought it would.
5. Now and then, I get into this mind frame that none of the words matter. That talking about it, writing about it, even thinking about it, doesn't change anything. Sick is sick and this cannot be cured.
I get mired down in the belief that I've said everything there is to say about Fibromyalgia, the concurrent illnesses, and how it makes me feel not only physically but mentally and emotionally. I know I'm working through those feelings and I'll come back to write again.
Wednesday, April 9, 2014
Saturday, April 5, 2014
I got a call from my aunt this week, telling me that my mother has been diagnosed with breast cancer. The reason my aunt told me is because my mom and I do not speak and havn't for years. It seems like that should be against nature - a mother and child not communicating. I wish it were, anyway.
My mom abandoned her children when we were very young and my dad raised my younger brother and myself. I've tried having a relationship with my mother since then, as a teenager and then again as an adult but she's a severe alcoholic and made it close to impossible. I finally gave up in my late 20s.
I thought in the years following, I had sorted out my feeling regarding the entirety of our relationship, or lack thereof. I've never been afraid to be alone, sit quietly and face the hard stuff in my life, figure out why it happened and find closure. I have found forgiveness towards my mother based on her own life - she had some truly horrible and tragic things happen when she was young that I believe broke her.
But even forgiving her, I still chose not to be in contact because I knew she was toxic and so would any relationship with her be. And then I got the call from my aunt saying my mother may have terminal cancer. That she's had a lump for a long time she's ignored and it may have already spread.
I was sad when I heard and as the day went on, the emotions built. So did the confusion. I hadn't expected to feel much of anything when this time came. My mother is a stranger to me so why would I grieve?
And yet.. I am. I'm sad that she will go through something as awful as cancer without many people around that love her. I'm sad she made decisions in her life to make that a truth. She's pushed away sisters, friends, children, and grandchildren.
I have realized that while I believed every feeling towards her had gone, there has always been one small flame of hope in my heart that someday my mother would love me, that she would finally want her daughter.
I wish things were different and that mother and daughter were not 1000 miles and too many burned bridges apart but the truth is, other family members will keep me posted with news of my mother - any surgery needed to remove a lump or her breasts, chemo and radiation, the loss of her hair, remission or how long she has left. And if she dies, I will do what I thought I had already done a long time ago - miss my mom.
Monday, March 17, 2014
Friday, March 14, 2014
Wednesday, February 26, 2014
We talk to our loved ones, those closest to us and that's important and necessary. And yet, it's difficult to be.. raw, brutally open and honest, to show them the very harsh reality of what a disease is and how it manifests not only physically, but mentally and spiritually. I can't speak for everyone but it is my nature to protect them.
Hence, the need, often times, for a non-invested person to talk with. We don't have to shield them. We're finally free to rant and rave, to cry until we blow our noses into wadded up tissue that has been gripped tightly by a fist that trembles.
This is what surprises me most about being sick - how strong one must be to keep fighting for their life or their quality of life. By the very nature of being ill, having an illness or disease, you're already physically weaker. Yet, we find some inner source of strength, sheer force of will, that keeps us going.
The freedom to say anything we want and to release a well of emotion is crucial. We absolutely need to get it all out until we're limp and empty of the bad stuff for a while. Maybe your person to do that with is a spouse or best friend, a lover, a soulmate, your favorite cousin or your pastor. Maybe it's the therapist that sits across from you, silently watching with a look of compassion on her face as yours crumples.
Somehow, she knows that you've pretty much got this figured out. You're a smart cookie, you've done the research, you know the five stages of grief and you even know you'll have to revisit them from time to time. She listens and knows that you're going to be okay, that you'll find a way to live this new life that fits like too small, pinched, ugly shoes at times but slowly, you're finding your way to not just hobble but dance in them.
Monday, February 17, 2014
Today, I made the bad decision to have two chicken pot pies for lunch. Less than an hour after eating the delicious mixture of crispy crust, thick gravy, chunks of chicken and a few tasty peas and carrots, I was quarantined in the bathroom, gasping through the 'hold on until your knuckles are white' cramping of IBS. (Irritable Bowel Syndrome)
When I first began having IBS five years ago, I could still eat nearly everything I wanted to, whenever I wanted to. Now, food has become the enemy. Eating isn't safe anymore. One of the very few things human beings require to keep living is fuel - food turned into energy. I feel lost as to what to give my body when it repels and expels that which it needs, on an ever changing whim.
IBS is painful and frustrating. When the first thing you look for in a new restaurant is where the restroom is located or when you're afraid to go out to eat in the first place because public bathroom pooping is sketchy at best, you realize this is changing your life.
Nobody wants to be in the bathroom at Walmart & live through the embarrassment of nuclear butt explosions while some poor mother is rushing to wash her toddler's hands at the sink so they can get the hell out of there.
And then there is your family, waiting at the table to pay the check and leave while you're figuratively chained to a cold, leg numbing toilet until there's nothing left in your digestive tract. You know that they're used to it, they understand and yet you're hunched over, tapping out apologies and SOS messages for more toilet paper on the only link with the world for the next half an hour, your phone.
When I was nine years old, my mother abandoned both my four year old brother and myself. How does that relate to IBS? Well, both are super crappy. (Pun intended - humor gets me through.) But seriously, I mention it because my mom and her sisters all have similar digestive problems. This seems to be hereditary and it truly angers me that someone who couldn't be bothered to raise their own child has the ability to pass on something so awful to live with.
I know life isn't fair but there gets to be a point where you stand in the middle of a storm called Fibromyalgia, IBS and a bunch of other stuff and you say, "Why me?" Genetics doesn't offer comfort, nor mercy. Nor does a padded toilet seat.
Friday, February 7, 2014
Monday, February 3, 2014
This winter has been bitterly cold. Day after day after day. Not too long ago, Alaska was warmer than we were. It's snowy and icy, treacherous not only to drive in but simply to walk from place to place. All of that is good news for a recluse. Though they didn't need an excuse to stay in the house, it still provides a good one.
As everyone knows, cold is not a friend to the Fibromyalgia person. It quickly and without mercy debilitates us with excruciating pain and fatigue. During the winter months, our view of the world becomes as narrow and square as the picture above.
A window, two palms pressed against it until the cold seeps in through glass and we pull them away again, hands held over our mouths for warm breath as a wide, lonely gaze peers over top curled fingers, looking into the grey and the white for a hint of warmth to come.
By late January, even I, the homebody, the person with an illness, am desperate to feel the sun on my face. I need to feel the warmth seep into my skin, brown it a little bit. I want to twirl a circle and skip a few steps and watch the world around me explode with color once again as a new season is born.
Friday, January 24, 2014
Shelley, over at Chronic Mom, nominated me for the Liebster award. I'm so excited, my first blog award here but I hope not the last! The Liebster award was created to recognize and/or discover new bloggers and welcome them to the blogosphere.
I admit to always being so happy when I get a comment on one of my posts or a new follower. Anyone taking their time to read things I have to say is an honor.
I hope Shelley doesn't mind but I'm going to borrow how she explained the Liebster award & how it works:
Once you receive the award you pay it forward to other blogs of your choosing and then they pay it forward from there etc. It's kind of like a chain letter but less annoying since you get exposed to other blogs and other people get exposed to yours. The nominator asks ten questions of the nominees and here's the questions Shelley asked of me:
1. Why did you start blogging?
I began blogging because I wanted to tell people, within my posts, "Hey you, you're not alone on this journey. We may not know each other but I'm right here with you, learning how to be a new version of myself with this disease." I wanted to give folks posts to read where they say, 'I have that happen too!' or 'I feel that exact same way, I'm sad and angry but it helps that I'm not alone.'"
2. What is your favorite quote?
"Mother is the name for God in the lips and hearts of little children." - William Makepeace Thackeray
(This quote was said by the late, great Brandon Lee on the movie, "The Crow".)
3. What is your favorite book?
Any book by Kristin Hannah. The stories her books tell are the heart and soul of all women and the depth of love we are capable of. I cry each time I read them and I've read all of them multiple times.
4. What is something you have learned recently?
That Android phones are based on Linux.
5. What is your biggest pet peeve?
The space around me not being organized.
6. What are three random facts about yourself?
a. I need music as a daily part of my life. (As evidenced by the playlists on my 8tracks.com page.)
b. I have four birthmarks and four tattoos.
c. I see love.
7. What song are you addicted to at the moment?
Imagine Dragons - Demons
8. What is your most cherished memory?
When both of my children were born and watching my grandson come into the world.
9. What is the first thought that popped in your head this morning?
Pain. It hurts.. get up.. but it hurts.. I know, get up.
10. If weight were a non issue, what one thing would you eat every day?
Medium rare ribeye steak with a light glaze of real butter and A1 on top.
The Liebster Award is a way to recognize worthy and inspirational blogs with under 200 followers. You can choose to view it as an annoying chain mail message, or a lovely recognition and pay it forward. These are so many blogs that I check into as often as I can, for inspiration, a laugh and community but I have chosen to nominate these three for the award:
Fightin The Fibro
Life And Fibromyalgia
Learning To Trust
The 10 questions for my nominees are:
1. Why did you begin blogging?
2. What is your favorite way to spend time?
3. How has illness most affected your life?
4. What is your favorite movie?
5. What do you hope to share most with your blog?
6. What are three goals for 2014?
7. What are three random facts about yourself?
8. If you could have dinner with any famous person in history, alive or dead, who would it be?
9. What's your favorite song?
10. What is your favorite quote?
Monday, January 20, 2014
If you havn't heard of this poet, Tyler Knott, please look him up. His work is inspiring, beautiful and soulful. I'm such a fan.
All of his poetry speaks to me - some on love, happiness, sorrow and some on being ill as this one does.
If all of the pain in my body caused tiny cracks that allowed the love I feel for others to shine out, I would glow with light and warmth and it would heal me from the outside in.
You can find his website here: Tyler Knott
Friday, January 17, 2014
Often times, I come across good research in the fields of Fibromyalgia and other chronic pain diseases. Some of them are years old, some new but regardless, they teach and allow me to better handle my illness.
When I find those articles or studies of interest, I want to pass the information along here for my readers perusal. Maybe they will educate you or help you to feel as if things make a little bit more sense. At the very least, you might read one and know that somewhere out there, people are trying to help us.
Here is an article, albeit a few years old, that I read the other night: Nerve Damage In Fibromyalgia Patients
Wednesday, January 15, 2014
Monday, January 6, 2014
One of the most famous songs ever and it does remind me of how strong I am. I may not be beating on a bag, doing push ups, sit ups, jogging or even running faster than I thought humanly possible at the 4:07 mark of the video, but I get out of bed every day and fight a disease that has no mercy.
Sunday, January 5, 2014
As a follow up from one of my recent posts, All I Want Is A Cure And Good News: I saw the Endocrinologist early this week and he told me that though the first set of tests on the adrenal tumor had come back abnormal, the second set proved that everything is fine. Yay!
I've had this benign tumor sitting on my right kidney for years. It's only been the last two years that they've decided to watch it with tests to make sure it doesn't become active. The doctor wants to check again next December and if it's still 'quiet', we can leave it alone.
Yesterday, I had an appointment with my Gastroenterologist. It was far less positive. I have IBS, which is a common concurrent issue with Fibromyalgia. I also have chronic Diverticulitis. And ulcers in my stomach. I have to see a nutritionist on an ongoing basis and go on a very limited diet to try and control the problem areas.
Diet is the worst four letter word in the English language.
I am what I like to call curvy. What that really means is I have weight issues but this diet isn't about addressing that problem at all. When I lose weight, and I will, that will simply be a positive side effect. A bonus, if you will.
The real issue is the chronic Diverticulitis. To put it as simply as I can, there are small pockets in my intestine/colon that can catch food particles in the stool and it then becomes infected. That's.. not good, to say the least. A big percentage of the population over 40 have those pouches and even more people as they age past 40. But not everyone has food become trapped in them/infection issues.
Sadly, I do and if it flares up too many times, they will want to do surgery to remove that part of my colon. Anesthesia is a serious risk for me because of sleep apnea.
It just keeps going, doesn't it? They all link together to form this invisible chain that binds tighter than any metal ever could.
I have so many thoughts and feelings on all of it. Last night, I sat at my desk and sobbed - those great big, hiccuping, gulping air sobs of grief. Sometimes I feel so overwhelmed by it all.
The irony of being sick with any disease, illness or injury is that it takes the strongest person to cope with the physical, mental and emotional aspects but we're so often at our weakest by the very nature of being ill.
I don't know how I do it. How any of us keep doing it. Fighting, that is. But I also don't feel like there's any other choice.