Monday, November 2, 2020
Cat Intro - Esther
Friday, October 30, 2020
Fibro Friday - Fibro - a pain in the ... everywhere
Sometimes I think I never really understood pain until Fibromyalgia.It’s especially fun to describe it to doctors or your friends and family. I was on a facebook page for people with fibromyalgia and other disorders Facebook - But You Don't Look Sick and one of the ladies shared that she wished her pain would stay in one place. I could totally relate to that! I remember trying to explain my pain to a doctor the first time and telling him it was varying – sharp at times, achy at others, and that it often traveled. He looked at me like I had claimed to be Elvis Presley back from the dead.
Not one to quit easily, I tried pulling out my bag of writer tricks. I told him to imagine a picture of lightning. A photograph captures features we can’t normally see or focus on when we only catch a glimpse during a storm. Most photos show lots of “arms” or branches shooting off the main bolt. My pain is intense for a moment in one spot and then moves to another, then another – like a bolt of lightning traveling through my body. In case you’re wondering, my doctor still saw me trying to perform Blue Suede Shoes.
Okay - so then I would move on the the pain that feels deep - like it's in your bones. I initially thought it was some sort of early onset arthritis - but my doctors assure me my bones are fine and it's actually the muscle and nerves causing my pain. Sometimes I still could swear someone has taken a corkscrew to my bones.
Then I’d try to explain the sensitive skin. That one is so much fun. Fibro affects each person differently so you may not have had problems with this, but I know quite a few who have. Sometimes it can feel as if you’ve gotten the worse sunburn in your life. It stings and clothing hurts when it brushes across it. Everyone I’ve talked to has only had this in certain areas of their body and there are no physical marks or redness on their skin. Another delightful way this can show itself is to make it feel as if you’re bruised when nothing has happened. My especially fun combo is that I tend to have problems with the back of one of my thighs (only one - don’t ask me why) and I have IBS so I end up spending, um, unfortunate amounts of time sitting on toilets. TMI? Sorry.
This whole skin sensitivity truly adds a lot to the romance department though. I know, the normal “tenderness” and honest to goodness pain we all feel can kill a romantic mood faster than skunk spray. We’ve all been there. There are times though when it feels as if our own skin is turning against us. My poor husband is a serious cuddler. I love him so much and wish I could return the sentiment. Unfortunately, a lot of the time his squeezes and caresses feel more like cuffs and clobbers. That isn’t helpful for setting the mood.
Even when you’re trying to do something positive and healthful it can backfire. Let me confess—one of my “dirty” words is exercise. I know it’s supposed to be good for you, but I’ll bet most fibro patients have experienced a flare from it. If you aren’t familiar with the term “flare,” it’s used to describe a time when you’re symptoms are much worse than they normally are. It’s like the slow drip of our normal “faucet” of pain has been replaced by a fire hose. Some of my worst flares have come from trying to work out. The problem comes because workouts are supposed to be good for us, but any stress on your body can cause a flare. So, if you stress your muscles too much … flare.
I remember my first workout flare. I was struggling with my weight and dieting just wasn’t working. I’d been active most of my life. Army training wasn’t a joke and I’d done some pretty serious home workouts as well. I knew about sore muscles and I’d put up with the pain of fibro so far. I figured I could handle it (I can hear you laughing). I could barely move for over a week. This went way beyond normal workout pain. Being about as smart as a rock, I tried again a couple weeks later. It doesn’t take a rocket scientist to figure out I ended up not wanting to move or have anything touch me for days – again. It didn’t make sense to keep it up because I couldn’t make any progress if I was bedridden for that long after each workout. It was like someone had beaten me from head to toe, plus every other disorder I had acted up as well.
Friday, August 7, 2020
Doctors - Fibro
One of the most important decisions you can make related to Fibromyalgia is your doctor. Most people I know were directed by their normal doctors to Rhuemotologists or pain center doctors. I have seen both. I also saw a neurologist when I was still seeking a diagnosis and had some strange symptoms (especially a tremor) that they thought may be due to a neurological problem.
The neurologist was less than helpful. I was in a flare at the time (so bad that I had pulled my news to my chest in the car and cried all the way to his office). The tremor was worse when I was tired or stressed out and it didn't show up until almost the end of our appointment. It was the only thing he was interested in - he ignored all my other complaints. His diagnosis and expert advice? I was getting older and "it all goes downhill after the age of 18." I was 28 years old at the time.
Then I saw a Rhuematologist that did a tenderpoint exam and diagnosed me with one of the worst cases of Fibromyalgia he had ever seen. I was relieved to have an answer and did a ton of research when I got home. He was a very nice man - and I believe he tried to help. He put me on medication. The problem was he ignored my medical chart and gave me medicines that interacted with other prescriptions I was taking -- and also ignored allergies listed on my chart. I had a couple very bad reactions before I realized what was happening and asked my primary care doctor to take over management of the symptoms of Fibromyalgia.
The pain management doctor told me Fibromyalgia pain was all "in my head" and due to abuse. When I asked what he meant, he told me most Fibromyalgia patients were victims of child or sexual abuse whether they would admit it or not - and their symptoms were psychological and not physical. Seriously?
It may take some trial and error to find a doctor who listens and you can trust. It's very important though. Some suggestions I have for making the most out of an appointment are:
- Make a list of any questions or concerns you have. Leave space to jot down notes on the answers given as well. When you're in the office, it can be hard to remember everything -- and it may take another 6 months or a year before you're seen again - so you don't want to forget anything.
- Make sure you share any supplements you're trying with the doctor. Some supplements interact with medications making them not work - or even have a bad reaction.
- Note any helpful things you've tried. It may lead the doctor to another medication or activity that could be even more helpful.
- If you have any new negative side effects or symptoms (even if you think it's unrelated to Fibromyalgia) share them.
- If the doctor is prescribing a new medication, make a point of asking if this will interact with any medications you are already taking - and any side effects or allergic reactions you should be on the lookout for. Just asking will probably cause them to take a second look at your chart and could avoid any mistakes.
- Look up those new medications for yourself - and/or ask the pharmacist questions.
Also - if your doctor ignores you, makes mistakes with medications, never has time for questions, etc., find a new doctor. You need someone you can trust fighting beside you.
Take care of yourselves - you're worth it.
Monday, August 3, 2020
Cat Intro - Faith
Thursday, July 30, 2020
Fibromyalgia - The dragon
Wednesday, July 29, 2020
Good News
It can be really depressing to watch the news these days. I don't know about you - but I have been really wanting some positive - encouraging news.
I read an old copy of Reader's Digest and it was listing cities in all 50 states - highlighting good things. So I skimmed until I found my state (Kansas) and looked at what was listed.
It was really wonderful because it wasn't just a "nice" program. A woman and her son both struggled with addiction to opioids. Her son lost his battle. She overcame and turned that horrible experience and loss into a positive by donating her house to help others who are struggling.
Now her house not only provides shelter and help to women - but those women also reach out and give to others who are in need. It's a great story and the impact is amazing. It's called Cedar House and here is their website where you can read more about it: The Cedar House
It just takes a little light to drive away the darkness. Look for the light and have a great day!
Monday, July 27, 2020
Cat Intro - Thomas
My cats are a bit like my children. We have a lot of them and they are all different. I thought I would introduce you to them.
The oldest is Thomas. He was surrendered with his whole litter to the shelter. His family thought they would sell the kittens for profit - but that was harder than they expected. Supposedly one of his parents was part Maine Coon, but he is small and doesn't have the face shape. So he is technically a domestic medium hair tabby with white. This picture isn't great - I'll look for or take a better one -- but he does have the mane around his face, shorter hair at the neck and then fluffs out again all the way to his tail - which he waves around like a flag.
When we adopted him he cried until we put an arm next to the crate. He put his paw out to hold on and he was calm the rest of the way. He still likes to be touching one of us most of the time. So much for stand offish and unemotional cats. lol
He is getting up there - 15 years old now. He is the one who always "greeted" any new cats first and I have adorable pictures of the kittens cuddling with him. (They loved to play with that super fluffy tail.)
He is very bonded to another cat we got about a week later, named Faith. I'll tell more about her in my next intro.







