Friday, 28 October 2011

Because you asked....Potato Soup

My potato soup recipe has been requested. It was cold and wet yesterday. I was achy and miserable. Nothing but soup sounded good – potato soup. *sigh*
Again, I don’t generally measure anything. I cook with handfuls, pinches, and little bits of this and that. I season, I taste, and I season again until it’s right. This is my best estimate of what I did last night.
You will need:
1 – 32 ounce carton of vegetable broth
6-8 potatoes – peeled and cubed
3 ribs of celery – roughly chopped
1 small onion – roughly chopped
4 large carrots – peeled and roughly chopped
1- 16 ounce container of sour cream or 1 block of cream cheese
1 stick of butter
Small container of half and half (I have also used heavy cream or evaporated milk)
Salt and pepper to taste
2 heaping tablespoons of cornstarch dissolved in cold water (or you can sprinkle in some instant mashed potatoes. I’ve done both to thicken)
Crumbled bacon and cheddar cheese to top – croutons are good too!

Place vegetables in soup pot and cover with vegetable broth. Add a little water until the veggies are completely submerged by about an inch or so. Add a little salt to the water.

Bring to a boil and cook until the vegetables are tender and cooked through. Add your stick of butter, sour cream, and a little more salt and pepper. Taste for salt content.

When the butter is melted and the sour cream is dissolved, gradually stir in your milk product (half and half, etc.). Let the soup simmer for a few minutes and if it needs to be thickened, this is where you either stir in the cornstarch mixture or the instant potatoes. If you use the potatoes to thicken, I’m thinking about ¼ cup, maybe? Either way, stir as you add or you will just end up with a clumpy mess. It’s kinda like making gravy, you know?

It’s so hard for me to do recipes. I cook by sight, by touch, by taste, and by experience. Hope this is enough for you to go on and hope you enjoy.

Monday, 24 October 2011

Fibromyalgia Wrote Me A Letter....

I didn't write this, but I could have. I have no idea who wrote it either. It was sent to me in an email by a work friend who, in spite of not having fibromyalgia, is so compassionate and understanding. She read this and immediately thought of me.

I also thought I'd share this little bit for you in case you were confused. You may have noticed on my Facebook page little things about lilacs, mulberries, amethysts, or LMA. It's a pain rating from The Chronicles of Fibromyalgia page. Lilacs are Low pain. Mulberries are Medium pain, Amethyst is Awful pain, and LMA is Leave Me Alone pain.

I promise, this is not turning into a fibromyalgia blog. There are enough of those out there. I'll try this week to work on something new to share. Some fiction maybe. In the meantime, read at your leisure.

Hi....My Name is Fibromyalgia, and I’m an Invisible Chronic Illness.

I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you, and... gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else
feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay!

I hear you‘re going to see a doctor who can get rid of me. I’m rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.

Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago“, not hearing that you said 20 DAYS ago.

Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I guess you already found out...the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.

Thursday, 20 October 2011

11 things I want every doctor to know....

There are so many things patients want their doctors to know. Things we never say in the office because there’s never time to get to THOSE complaints. But, in hopes that some freak thing will happen and a doctor will read this, I’m blogging about it today.
1.       Having “MD” behind your name doesn’t make your time more valuable than mine.
A)     I will not wait longer than 30 minutes beyond my appointment time to see the doctor. This includes time in the waiting room and time sitting in the exam room waiting for you to make an appearance. I’ve got things to do too. I’ve taken off work to come see you. I’m losing money. I only make an exception to this rule if you don’t fit what I’m about to describe in “B”.
B)      When I reach the exam room, you’re not going to rush me through like I’m caught up in a cattle call. This is one I WILL call you on. I came prepared, with a list (to help save time), ready to address my issues, and I’m paying you to address those issues with me. So, sit you’re your butt down and give me what I’m paying for.
C)      The cause of “A” and “B” is that you have chosen to consistently overbook. This takes me to an old military saying, “Piss poor planning on your part does not constitute an emergency on my part.” Plan your day better so you can give your patients the time they need and treat them like they matter. REMEMBER: You’re making a living off me!

2.       I don’t care if you don’t care about me. However, I do care if you treat me like you don’t care about me. I need your undivided attention. If you miss something while I’m telling you what’s going on with me, I could end up seriously ill or dead. I have several health issues, two of which can be life threatening if not treated properly.  So, get out of la-la land and listen up. The life you save could be mine. IT’S PROVEN: PATIENTS LISTEN TO DOCTORS WHO LISTEN TO THEM!

3.       As much as I need you to listen, I also need you to talk to me. Don’t treat me like I’m just fortunate enough to be in the room with you while you’re working. Tell me what you’re thinking and tell me what you think I should be doing. If you’re performing a test, tell me what I should be expecting. I actually had a neurologist come in the room, have me lie down on a table, and without saying a word, began  jabbing needles into my legs and zapping me with what amounted to a mini-taser. Gee, jerk-face, thanks for the warning! When he was done, he just walked out of the room. End of visit.

4.       I need you to think outside the box. Don’t keep running the same tests over and over to get the same results. Look further. What tests fit that you haven’t run? What things have you not considered? It reminds me of an analogy of a toy robot that runs into a wall, backs up, and runs into the same wall again without thinking, “Hey! If I turn around and go another direction I might reach the destination.”

5.       Don’t assume that you know better than me what is normal for my body. I’ve lived with it for 39 years. I know better than anyone what my “normal” is. I’m also smart enough to know that my normal can change. However, there are two kinds of “not normal”. One is expected with aging and one is “there’s a problem here”. I know the difference, you should too. This goes back to #3. Listen up, dude, I’m talkin’ here.

6.       Don’t make promises you might not be able to keep. Give me the statistics. If there’s a chance something won’t work, tell me what that chance is. If you’re just experimenting to see what kind of results you get, tell me that too. I’m a big girl. I can take it. I need honesty, even if it hurts.

7.       Don’t make major medication changes for me without discussing it with the prescriber. This is why we have Primary Care Physicians. It’s called “managed care”. You’ve heard of that, right? It’s where I have a primary doctor to manage my overall medical care… there’s a good reason for it. I once got tied up in this battle between one of my specialists and my primary doctor. They got in a tug of war, with me in the middle, regarding which medications I should be on to manage migraines, fibromyalgia pain, and sleep. They repeatedly changed my meds back and forth before I finally got mad and told them both, “No more changes until you talk to each other and reach an agreement about what medications will work best for me. I am not a guinea pig and I am not a weapon in your battle of wills.” Seriously, am I managing a pre-school playground here?

8.       We have a working relationship. Relationship indicates a give and take. I am not a dollar sign that equals a new pool in your back yard. I am a person who is sick and wants to feel better. I’m willing to do whatever it takes to make that happen. I need you to be willing too.

9.       Expounding again on #3. If you have ideas but feel your hands are tied by my insurance company, tell me that! I might know how to help you get around it. I would definitely be willing to do the leg work and find out if anything can be done.

10.   Be compassionate. I know you spend 10-12 hours a day, plus nights, holidays and weekends on call, listening to people complain all the time. I know that sometimes it’s hard not to get wrapped up in it when you listen to negativity all day. But, I still need you.  Honestly, if you’re that jaded and disgusted with what you do for a living, maybe it’s time for a career change. You’re not helping anyone if you’re tuned out and cynical.

11.   Your learning curve didn’t end when you finished medical school. The medical field is constantly and rapidly changing. Diagnostic criteria changes, the areas where testing can reach changes, treatment regimens constantly change. I expect you to be on top of those changes. This goes back to #4. Thinking outside the box.
These all add up to some very basic things; compassion, respect, knowledge, consistency and kindness. It’s not too much to ask. I expect a doctor to have them. When he/she doesn’t, they get a letter from me before my next visit. Then, at the next visit, I ask them, “Can you work with this, or would it be better for me to find a new doctor?”  So far, I've only had one that didn’t appreciate my candor and attempt to work with me—the creepy neurologist I mentioned above.
Miss anything? Anything you think should be added to this list? Any doctors care to leave a rebuttal to any of these? Leave me a comment.

Sunday, 16 October 2011


She was beautiful.  Not just in a conventional way. It was an inner radiance, almost tangible.  She was sunshine that warmed you when she smiled. One of those rare humans who was so real that you couldn't help to look harder at yourself to see how you might look in comparison. And, if you didn't measure up, she didn't judge you, she just encouraged you to do better next time.

She was only fifteen, but she carried the wisdom of an old soul as if it were weightless. She responded to mean spirited questions as if they were the most ridiculous things she'd ever heard. It didn't matter if you thought her choices weren't cool. Because they were, without question, absolutely right.

Sometimes I still drive through that little town and find myself detouring to the back corner of that cemetery just to take a moment and let her know that I still remember.  I dust off her headstone and wish I'd remembered to bring flowers. I remember the day I saw her mother there. I tell her of all the lessons she taught me. No one knew or practiced love like she did.

Today would have been her birthday. Today I shed a few tears in remembrance.  

Today when I still want to be confused and angry that she wasn't allowed to be a blessing to more people I remember....

when I am kind she blesses others.
When I am honest she blesses others.
When I do what's right she blesses others.
When I strive to be what I knew her to be, I keep her alive.

These are the truest ways to honor her memory and it's something done by all of us fortunate enough to have called her friend.

Thursday, 13 October 2011

An apology for yesterday's rant...

So you may notice I deleted my last post. I had a moment. I don't know what else to say. I'm sorry.

Honestly, I didn't delete it for anyone else's benefit. I just had some time to think on it and I'm honest enough to say I was being immature. I don't believe any friend I was referring to read the post and I'm glad for that.

Just know this: if you have a friend who is hurting or sick,  don't stop calling just to say hi. Sick friends don't expect you to know what to say. They don't expect you to placate them. They just want to know you still care.

Sometimes, just the fact that someone took the time to acknowledge them is the best medicine. 

Friday, 7 October 2011


It's almost more trouble than it's worth to type out this little post this morning. I woke up today with pain and numbness in my hands and arms and it won't go away. With the assistance of my blogger app, I'm posting from my phone this morning- - somehow from a supine position in the confines of my bed, while my little Lola sleeps at my side.

Only another person with a pain disorder wouldn't feel shocked at the number of hours a person like myself could sleep and lie in bed. Sure, I try a little yoga when I can. I try to walk when I can. But, despite doing everything the doctor says is necessary for fibromyalgia I still get no relief and continue to get worse.

I wonder then, how "they" can insist this is fibromyalgia.  Wouldn't it be reasonable to think that if it were I would get relief by following the doctor's advice and taking meds as prescribed? 

I find myself discouraged and angry more often than not. It would be so easy to just give up and quit.

I miss my friends. I miss being able to get up and go whenever I want. I miss Friday night football.  I miss my little blog. I'm tired of being stuck at home waiting for a good day.