Sunday, August 24, 2014
I don't know why.
Lately, I've been tired.
Fortunately, I haven't had a ton of pain to go along with the fatigue but the fatigue has been off the charts. I wake up and within a couple of hours I'm yawning and having a tough time holding my eyes open.
So I go back to bed.
It feels like someone just let the air out of the balloon. Roadkill. I want to get in the bath but I'm just too tired to do it. I'm also afraid that I'd fall asleep in there. So I'm looking at articles.
Let's see what the experts say......
Point number 1: See your doctor.
I've met a number of people who have chronic illnesses. Most of them will say the same thing I do. I've got the doctor on speed dial. I don't think seeing my doctor any more than I already do will help anything....short of having him move in with me. I think he's sick of seeing me.
Point number 2: Get enough sleep.
I hate to be pissy at this point but one of the markers of a chronic illness is those ever pesky sleep disturbances. Get enough sleep? Sometimes that's all we do. It's not the number of hours that will restore our bodies and souls. It is that we don't descend into full REM sleep. Some of us take enough medication to knock out a horse but sometimes that isn't even enough to keep us asleep.
Point number 3: Aim for more refreshing sleep.
All I can say is WTF? Go to bed earlier so I can wake up earlier? Huh? Don't watch TV in bed. Yeah, right. Good, I can lie there all night and look up at the ceiling. Plan your evenings carefully. Who came up with this stuff? All I can say is, "geez, the sixties were good to you."
Point number 4: Exercise for energy and to help you sleep.
This just keeps getting better and better. Now, I'm not saying that we shouldn't move. It's vitally important. It's just the picture of the woman in this article is just plain annoying. There isn't one clue on her face that gives the reader any clue that she's in debilitating pain and/or fatigue. Did you know that you shouldn't exercise late in the evening because it may interfere with sleep? REALLY?????
Point number 5: Eat well to fight fatigue.
I hate to be a buzzkill here but I can eat a nutritionally balanced diet and it has no effect on the fatigue. Moderation in all things is important but a blanket statement like this means nothing. Sometimes a little ice cream helps the mood!
Point number 6: Step into the sunlight.
This brings to light (excuse the pun) the value of sunlight and the ability to reset our internal clocks. Again, I hate to be Debbie Downer but our body clocks are totally screwed up. Stepping out into the sunlight isn't going to reset it. We need the Vitamin D but I don't think this will help in the fatigue department. Plus, if you live in the desert.....well, you get the idea. Going outside when it's 115 isn't a good idea.
Point number 7: Maintain a healthy weight.
I'd love this one. This has been the bane of my existence since I got sick. I can eat 1200 cals or less and zippo. Nothing comes off. Anyone else have trouble with this?
Point number 8: Manage stress to fight fatigue.
I totally agree with this one. Stress is a killer. The problem with theses invisible illnesses is that there is fallout. There is a huge economic fallout that accompanies chronic illness. It's disabling and as hard as we try to keep some sort of normalcy it hugely impacts your ability to make a living. If your career was a high stress environment you have absolutely no chance of being able to continue.There's relationship fallout. Whether it be from spousal, partner, familial or friends....everything and everybody is affected. People don't understand and take it personally. Stress????
Point number 9: Aromatherapy
I do like this one. I know there are people that are sensitive to smells and odors but if it smells good to me, I can deal with it. I love lavender and vanilla and use it on my body and pillows before bedtime. I don't know if it helps but I do like it.
Point number 10: Be good to yourself.
There is a lot of guilt and problems that go with chronic illness. We do need to be good to ourselves. This will be with us until there is a cure so we shouldn't be too hard on ourselves.
Now that I've done this.....
Going back to bed..........
Will I sleep?
That's anyone's guess.
Tuesday, August 12, 2014
Once in a while..
Something happens that touches us all.
Because it hits a little too close to home.
Hearing the news about Robin Williams death and the apparent cause really bothered me yesterday. In fact, it's bothering me today too. Sad, because the pain he carried gave birth to one of the most brilliant comedians of our generation and reflective because anyone who is chronic anything has probably toyed with that thought.
I call it the black hole.
I've been sucked down into it more than once.
Before all the health issues, when I was the real me I long for and remember, suicide was something I couldn't fathom. I thought that kind of thinking was weak. I couldn't understand how someone could do that and not think of their family and loved ones. Funny, what chronic pain does to you..... Then, something or someone brings the issue a little closer to home. Depression is hidden in the shadows. It's something to be ashamed of because you feel you should be able to control it.
Chronic pain, whether it be emotional or physical, plays with your head. You're always vigilant because there is a fear that it can break you. The pain is stealthy. It creeps slowly and morphs into depression and the depression is a danger in itself. It wants to isolate you and tell you that this is all that you need. Pains evil touch makes us doubt our faith and our strength. Fighting it is the only option that we have. It's a seemingly beautiful dance that whirls and twirls and that calm soothing voice whispers in your ear promising peace and an end to suffering. We need to realize that it is a fight that we will have our entire lives or until, magically, a cure is found.
Depression from chronic pain is just a wolf in sheep's clothing. We must stay vigilant and aware that the pain is causing our mindset. Depression will tell us that this fight isn't worth it. It will try to beckon our soul over to his side where he promises that the darkness will soothe our soul and give us a break from the pain. He gathers strength from our weakness and he plays us like a dealer to an addict.
Depression isn't weakness.
It's easy to hid it with a smile and laughter.
But it's right there......
hiding in your eyes and your soul.
It causes us to hide and isolate ourselves.
Then it's got us right where it wants us.
Always remember that voice is a lie.
Please don't be afraid to tell your doctor.
Depression isn't funny.
Suicide Hotline: 1-800-273-TALK (8255)
Tuesday, August 5, 2014
What is CIDP?
Why should we care?
In 2008 there was a small study that found that there was a subset of Fibromyalgia that was found to have chronic inflammatory demyelinating polyneuropathy. Basically, this is an immune disorder of the peripheral nervous system.
Fast forward to 2014. The follow up study also discovered high indicators of small fiber neuropathy in the legs of people with Fibromyalgia. If you've been diagnosed with Fibro and also have nerve pain, numbness or a tingling sensation in your hands, feet, toes, fingers, legs and/or arms, it's a possibility that you might have either small fiber neuropathy or the chronic inflammatory demyelinating polyneuropathy. Now CIDP is diagnosed by a thorough neurological examination, blood tests, nerve conduction and other test that leads to a final diagnosis.
What this does bring to mind is autoimmunity.
It also brings to mind subsets.
This brings Fibromyalgia squarely into the field of an immune-mediated neurological disorder.
Having said that where does autoimmunity come into play? If this truly is a subset of Fibro it's a little scary. This sounds like it could be related to MS. The symptoms have always been close. There are flares and remissions. This isn't new. This has been floating around for quite some time.
Now with the advents of research into this and AV shunts in the hands by Dr. Frank Rice it sounds like they're getting closer to a cause and it sounds like we have damaged nerves.
I think more research needs to be done in this area. Speaking of, I'm getting nerve conduction tests done. I'm anxious to see what comes of it.
The treatment that is used is intravenous immunoglobulin (IVIg). There are side effects from this treatment which include headache, muscle aches, fever, chest pain. The trouble with a lot of treatments is that the side effects sound a lot like the symptoms we experience with the Fibromyalgia, however, the treatment did help the symptoms in the study.
The immunoglobulin treatment is basically borrowing a healthy persons immune system.
If it works I won't borrow it.
I'll keep it.
Saturday, July 26, 2014
The more I read,
the angrier I get.
When did a pharmacist get the power to override or even question a doctors choice of medications?
The ones at Walgreen's do.
All it takes is an 80 million dollar fine for violating the rules on dispensing controlled substances and now a Walgreen's pharmacist can call your doctor and question him/her on your diagnosis and if prescribing a controlled substance is actually what they should be prescribing.
Oh, also, they can question how long you need to be on it.
According to an article in "The National Pain Report," there are red flags that can prompt a call to your doctor and, possibly, your prescription being denied. Some of those red flags I can understand. If you're seeking an excessive amount of pills or a multiple doctors prescribing the medication it makes sense that the pharmacist could exercise some caution. When you're on the prescribed medication more than six months, well, that isn't a flag. Chronic pain sufferers are just that. Chronic. What about cancer patients?
Don't even get me started.
Walgreen's calls it their "Good Faith Dispensing Policy" checklist.
Here are some of the points the pharmacist is to go over with the physician.
- the diagnosis
- expected length of treatment
- use of alternative or lesser medications for pain control
- the regimen is within the standard of care
- date of last pain assessment
I understand abuse and addiction. I've seen what it can do to lives. I think pharmacists have a duty to be observant and cautious. Doctor shopping for pills, filling prescriptions early tend to signal there is a problem. Not always but, in most cases, I would agree that using caution is prudent. Having said that I think it's absolutely ridiculous for Walgreen's to have the ability to override a physician. I wouldn't fill a prescription at Walgreen's anymore. I have nothing to hide but when they start questioning chronic pain, I draw the line. When I need my prescriptions filled it isn't for fun. A few days or weeks without them mean I'm in a great deal of pain.
Pain that a couple of Tylenol won't touch.
Oh, another little tidbit..........
If you go to Walgreen's and your prescription is denied?
That denial is entered into your profile.
It's seen by all of the Walgreen's Pharmacies (more than 8300).
It also notifies the DEA that your prescription has been denied and they must justify the reason.
However, if YOU want to know why????
I can't be sure but click here for the link to a possible copy of the checklist.
Thursday, July 17, 2014
I got an email
Asking me to share this.
Wait until you see it.....
CLICK HERE FOR THE SITE
CLICK HERE FOR THE SITE
I'm actually pretty impressed with myself.
I even played around with the code so it would fit.
Ok....enough patting on the back.
Thanks to Skylar Jameyson....
This is an amazing infographic and a huge help to many!