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Tuesday, September 27, 2011

Why I am giving

Believe it or not, Christmas decor is now available in retail stores! What happened to waiting after Thanksgiving? Now I know stores need business but, really? But this is not why I am blogging today.

I am giving, giving of myself and my money. I did something similar but I was really influenced by a post over at Christian Personal Finance. He is writing about a "Ten Day Give". You can view this at It is a great read.

Yes, I am finding ways to give, even though I am physically limited by my arthritis and fibromyalgia. I am concentrating on encouraging my husband, my kids and others. I can write e-mails and make phone calls. I am also utilizing money as a blessing and that brings me back to my opening statement on Christmas. You see, my husband and I will be exchanging one gift at Christmas. The money we would have used will be going to two of our charities, Gospel for Asia and the Salvation Army (local). Gospel for Asia equips native missionaries in the 10/40 window in Asia (India for example). We will be purchasing items from the Christmas brochure such as items for the poor (blankets, chickens, solar lights, tools, bibles, etc) and items for the missionaries (clothing, literature, bibles, bicycles etc.). The Salvation Army in my town helps the poor, conducts services, has a food pantry and conducts meetings for AA). I will be writing down what we are doing and put it in an envelope we can open on Christmas day. I believe we will enjoy reading that list much more than any gifts we may have received.

Accept this challenge to make a difference. What can you do?

Tuesday, September 20, 2011

Fibromyalgia and Surgery

It has been awhile since I have posted but I was very preoccupied by healing from my 5-17-2011 knee replacement. It is about this that I am posting today.

I had a knee replacement due to extreme osteoarthritis and ligament damage. There was no other choice but surgery. Now I did have some experience with this as, before I was disabled, I was an Occupational Therapy Assistant. I knew the surgery would be rough but little did I know ......

The therapists and nurses were fine but had no knowledge of fibromyalgia. The surgeon was only interested in my knee and not my overall additional pain. Even though I was promised pain relief I never found any in the hospital. Oh, the first day was great, Mr. Morphine Pump and I were just fine, thank you! However, after that initial 24 hours.....

Here is what I learned:

1. Really prepare yourself for being out of commission for awhile. I mean cook ahead, have someone lined up to help with the house, all scripts filled, all bills paid, etc. You will NOT be up for any of these tasks.

2. Have a heart-to-heart with the surgeon. Agree ahead of time on a plan for pain control. Believe me it is much harder to do when you are in pain already.

3. Make sure you are comfortable at the hospital. DO NOT worry about bothering the nurses or aides. They are there for you. If you need something ask. Cold? Ask for a warm blanket. Pain, get that pain pill scheduled. Hungry, get something or have someone bring it in for you. I know from experience that if you cannot get comfortable, you will not be able to control that pain.

4. Do not expect to have everything go perfectly because it will not. People drop the ball and you need to be on your toes. Be sure to have someone who can advocate for you.

5. At home, have all the equipment you need. I rented a hospital bed because all our bedrooms are upstairs and I was not sure I wanted to try the stairs at first. This proved to be a godsend.

6. Consider renting an icemaker or have access to ice at all times. You can use gel packs but I found ice to work much better.

7. Follow all instructions as written. Do not mix pills or take extra.

8. If your pain spirals and you have tried everything, call the doctor! You may have to get to the ER to get it under control again.

9. Be honest in therapy on what you can and cannot do. I had to educate the therapists on fibro in order to not bring on a flare.

10. In spite of your best efforts you may still go into a flare. Surgery is hard on someone without fibro, much less with it. Have your bag of tricks ready to go at home.

In the end, I am doing pretty good now that it is months later. However, with what I have learned I hope to have a better beginning with my right knee.

Do you have any other suggestions? I would love to hear them!

Saturday, August 20, 2011

Supplement Update

I am posting this update to my previous post on supplements that I am currently taking. Here goes:

Non-odorous garlic: still taking
Royal Jelly: ran out but I think it was an energy booster
Cherry juice: too acidic, had to stop
CoEnzymeQ10: too acidic, had to stop
Vitamin D: still taking
Olive Leaf: still taking but not noticing any effects

I am planning on replenishing my supply of Royal Jelly Bee Pollen.

Now, a little more on this subject of supplements, especially vitamin D. I have been reading some comments on facebook that the user states pain relief from taking vitamin D. I have been taking this for years and have never noticed any amount of relief from my pain or muscle cramping. I fear we in the fibro community are in danger of falling for claims on supplements as we are vulnerable to Big Pharma for new drugs. I wish it were as simple as swallowing a handful of meds and vitamins/herbs but it is not. Fibromyalgia is so complicated, so insidious that what works for one does not work for another or stops working altogether. I am becoming more and more convinced that we are just beginning to understand fibro and it will take a commitment from those of us who suffer to guard ourselves from chasing "cures". There are many snake oil salesmen out there plying their claims of cures, relief and pain-free promises. We must not fall for this anymore. We must insist on real studies and real research. Only our community can band together and ignore these con artists and push the medical field to what we all want, a real understanding of the mechanism behind fibromyalgia. Yes, I will continue to try a supplement here and there but only after researching the product for myself. Continue the fight fellow fibromites!

Wednesday, August 10, 2011

Supplements that I am trying.

I have been on a quest to try some new supplements. I have added the following:

Olive Leaf
Vitamin D
Cherry juice
Non-odorous garlic
Royal Jelly Bee Pollen

Quite the list so far, lol. Of the group the cherry juice was the most expensive. Here is where I am with the results:

Olive leaf: started 2 weeks ago
CoEnzymeQ10: this is in orange extract and is a bit acidic
Vitamin D: this I have been taking for awhile
Cherry juice: I have to cut this with water and it is VERY sour.
Non-odorous garlic: it really is
Royal Jelly Bee Pollen: capsule form

I have decided to keep taking the Olive Leaf, CoEnzymeQ10 since I just started them.
The vitamin D is for low D blood level. I am not going to keep the cherry juice. I have noticed no results and it is pricey. I am keeping the garlic.

The best of the group is the Royal Jelly Bee Pollen. It really has increased my energy level a bit and that is wonderful! I highly recommend this product. If anyone needs specifics, leave a comment and I will post a follow-up to this entry.

I am posting to try and help others in the quest to restore their health. Some of the claims are hype but some do seem to help. I would appreciate comments on what you have tried and how it worked for you. Until next time!

Sunday, July 24, 2011

Some Friends Just Don't Get It!

It was a lunch to remember, that is for sure. Not a good memory at all but one that has left it's mark on me.

I was really excited at the prospect of lunch last Thursday with my prior co-workers at my last job. It was a monthly birthday celebration/presentation by a physical therapy student.

It started with all the usual pleasantries, hugs and catching up. We all ate too much of the potluck's fare as usual. The presentation was simple and concise. After the student wrapped up the attention turned to my recent knee replacement (8 weeks old now). One of the PT's asked to see my new knee in action. I did so, flexing and bending as instructed. Then it happened, out of the blue like a lightening strike on a cloudless day. I was ambushed without a way out! The remarks were cutting and hurtful. The group (especially one) told me, in so many words, that I was not working hard enough, was a big baby in regards to pain and was not doing the exercises properly. I was stunned, speechless and wounded.

I left quickly, nodding a good bye and headed for my car. The tears started as soon as I put the car in drive. I called my husband who expressed outrage as I had expected. I blubbered on and on until I was done shaking.

I have decided that I do not need to do this to myself. The relationship I had with these people is no more. It is done, over and out. No more lunches. I am sad as this was one of my few outlets left but I cannot make sense of the attack. I really had tried to explain to them how fibro affects healing but it was to no avail. The tightness in my hamstrings has been there for years, the swelling in my legs the same. I have been through PT before with mixed results. I currently have a great PT who gets fibro and is very encouraging.

I guess my take on this is that no matter how much you educate and teach about this illness, few really get the scope of the ramifications on healing from trauma and/or surgery. I am sad about the disconnect with them and it breaks my heart to cut the relationships, but I have to protect myself. What would you do?

Saturday, July 9, 2011

Fibro and Supplements

There appears to be a great deal of chatter on fibro sites right now on various supplements. I am not going to address specific ones but just some guidelines, especially to the recently diagnosed.

A few things to consider when choosing supplements:

1. Has this particular product had a recent review by the National Fibromyalgia Association or like-minded publication?

2. What do you really know about the product?

3. Have you researched the product? Do you know the safe dosage range?

4. Did you talk with your doctor or pharmacist about possible drug interactions?

5. Do you have a condition that may make taking the product hazardous to your health?

6. How did you find out about the product? Did you see it on the internet?

7. Have you been to a support group (local or facebook) and talked with others about their possible experience with the product?

8. Have you compared prices and brands?

9. Can you honestly afford the supplement?

Lastly, do not expect a cure. Supplements can be a real help but fibromyalgia is not "cured". We can manage the symptoms and improve our situation but beware of any product that claims to have the cure.

Whenever there is chronic pain and fatigue we search for relief. In that search consider supplements but do so with common sense.

Until next time, stay well.

Friday, July 8, 2011

The Scar

June 12, 2011. On this date, Beverly Jean Rogers left this earth to the open loving arms of Jesus. She was my supporter, mentor, hero and, most of all my mom. Oh Lord, how I miss her.

She believed in me. She believed in my diagnosis of fibromyalgia. She always called to see how I was, if I needed anything or if she could help me in someway. All of this from an 80ish woman!

On any given day my mom could outwork me. She was an "energizer bunny" if you will. She raised 5 children on a salary my father earned as full time factory worker and part time farmer.

This has had a profound impact on me and is the big reason I have not blogged in so long. I just could not formulate a sentence. There was energy only for the necessities of life. In the midst of her later weeks I had to have a total knee replacement. The pain was terrible and the pain in my heart even worse. I sat by her bedside in a recliner with an ice pack on my knee and just watched her breathe. I never wanted to forget the sound of her gentle breath.

My knee is now healing but my heart is still breaking. All of this is not kind to my fibro at all. I am taking the summer of from playing clarinet in an outdoor band and I have declined many invitations. I have survived with the help of family and facebook friends. My husband has been so supportive.

What can I take away from this? That loss is part of life but it nonetheless sucks. The increased stress has caused me increased symptoms. I expect to slowly heal but not without a scar, somewhat like my knee. My knee scar is proof that I had surgery. I am living proof my mother existed but there will be an internal scar on my heart.

I will be dealing with this again. For now, let the healing continue . . . . .