Something New….Again

If you remember, last month I had a new treatment for my Fibromyalgia headaches. I have had a number of treatments over the years. I don’t think I could really even list them all. I’ve tried different procedures, treatments and medications. Some have worked and some have not. Last fall I had two separate procedures done to burn the nerves in my neck. That has worked fairly well. However, I was still experiencing debilitating headaches. They weren’t as frequent but they were just as intense when they did come. My terrific pain management doctor suggested a different procedure that would have to be approved by my insurance company. He suggested we try Botox. My appointment was on May 27th. I’ve been waiting to write an update here in order to get the full picture of whether or not it helped me. The first two weeks I didn’t really notice a difference. However, I have noticed in the last couple of weeks that my headaches have decreased. I’ve not had the same intensity of pain. I have gotten headaches and even had one that lasted a few days. But I think I can tell a slight difference. I’m not convinced it is enough of a difference to repeat the process though.

Today I had my monthly follow up visit and asked to have my pain medicine changed. I had been on the previous pain medication for about 3 years and have been noticing for a long time now that it has not been as effective as it was in the beginning. So she switched me to something fairly new called Nucynta. I had never heard of it before. As a matter of fact my regular pharmacy didn’t carry it. The pharmacist called four different pharmacies to locate it for me. It is a narcotic similar to morphine.

I will update in a few weeks to let everyone know how it helps/doesn’t help me. If you have a chronic illness you are, no doubt, skeptical about a new medication. Gone are the days of getting my hopes up and high expectations. Now I just kind of hold out a couple of weeks to see how it’s gonna work. So, at this point I am neutral. I’m not expecting much. I will keep you posted. Cross your fingers.

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Let’s Try Something New

I tweeted last night that I was starting two new products this morning to see how my Fibromyalgia responds. I’m excited to see what the changes will be. I’m going to Ohio next week. And I will be having a 3 day yard sale with my mom. Trips are usually enough to do me in. But carrying all my junk up there and then doing a garage sale for 3 days and then traveling back home will be an excellent test to see how I respond to the products. I will report on how I do on them over the next couple of weeks and let you know. I hope that you keep in mind that I am not “selling Advocare” to make money. I’m offering it because it helps me. I see so many people struggling all around me and getting very little help by the regular means. My goal is to offer a little something extra that you can add to your current routine in order to make a difference in your quality of life. Again I repeat, none of this is gonna cure you!!!! My only hope is to offer you the tools to get back into your life like I am. I’ve pretty much been bedridden by FATIGUE for the last year. I am out of bed. That speaks volumes to me. Yes, I still hurt. Uhhhh I have Fibromyalgia. Nothing is gonna change that. I am merely taking my health in my hands and finding something to put side by side with what my doctor is doing for me to produce a better result for ME. OH well, you already knew all of that. These are the products I started this morning.

BioTools

The first one is BioTools. I believe this product is probably exactly what someone with Fibromyalgia needs. Listen to the description:

For those who do not maintain an active lifestyle, twinges, aches, stiffness and pains may be a common and constant companion. An imbalance in the epigenome is a major contributor to these events. In addition to the BCAAs, the botanicals in BioCharge are known to help correct these imbalances in the epigenome and provide anti-inflammatory actions.

Goodness gracious! Is that us or what??? BioTools comes with two products. It comes with 30 packets of BioCharge powder that you mix with 4 oz (or as much as you want for taste). It contains Amino Acids, Grape Seed, Green Tea, B Vitamins, Taurine and Cat’s Claw. I’m just finishing up my first drink now. As you can see it’s only gonna be healthy. And it tastes pretty good too. The second product that comes in the BioTools package is BioTune. These are capsules containing curcumin, amla, resveratrol, cat’s claw, grape seed extract, zinc, selenium, alpha lipoic acid, boswellic acid, quercetin and green tea extract. The job of the BioTune is to protect the epigenome mentioned above so they can maintain a balance, thus balancing our body to control our aches, pains and stiffness associated with Fibromyalgia and so many other illnesses.

Keep in mind that I am talking about how these products help with my Fibromyalgia. These exact same products are beneficial for many other chronic conditions as well. All of these products are designed to support our bodies and maintain a general overall wellness to our various systems. If you have any questions about a specific condition I will be glad to help you research and contact our medical board members to get answers for you. And of course it’s always good to print off the product information and take it to your doctor to get his/her opinion.

MNS Max 3

The other product that I started this morning is the MNS Max 3. This product is like a super power!! It contains the following products CorePlex®, OmegaPlex®, ProBiotic Restore™, Calcium Plus, Amplify A.T. These are all seperate products but they are prepackaged into small packs for you to take in the morning and then again in the afternoon. The benefits cover everything from appetite control to a sustained release energy. The list of ingredients in this one product is extensive. vitamins A, C, D, E, B-6, B-12, folic acid, niacin, riboflavin, omega-3 fatty acids, astaxanthin, calcium, citrus flavonoids, green tea extract, lutein, lycopene, guarana, biotin, oolong tea, taurine, lactobacillus acidophilus, bifdobacterium, bifidum, artichoke, magnesium, zinc, chromium.

So I’m excited about what the BioTools will do for my body physically. And I’m excited about what the MNS Max 3 will do for my weight control and my stamina. These alone with the Spark. Somebody better watch out!!!

I will keep you informed on my progress – whether good or bad. Although I can’t imagine there would be any bad results. But I’m not gonna lead anyone astray. I am honest and I’m gonna continue being honest with you all too. This is something new. Who knows what it will do. But so far I’ve had NOTHING bad to say about ANY of it!

Advocare Blender Bottle

Now on a final note, remember I am offering a free Advocare Blender Bottle to anyone placing an order in the month of June. We have a number of yummy things to mix and stir. This bottle will make it all so much easier. You can just visit my Advocare Website and place and order. It’s that simple. No money exchanging hands between us. It’s all taken care of for you.

Health, Hope and a Future

If you had a chronic illness and had found a product that was helping you with some of your symptoms and was making you feel better and improving your quality of life would you want to share it? Would you want to shout it from the rooftop for your fellow sufferers? Would you want to tell everyone you know about it and encourage them to try it as well? That’s the position I am in. I understand the apprehension of others to believe such a product exists. Each of us who suffers with a chronic illness of any kind is very wary about the snake oil salesmen out there who are willing to do whatever it takes to make a dollar. Because we are always searching and desiring something that will help us feel better we come across as easy prey to people like this. I understand the apprehension of something new. I understand the cautious attitude that comes along with being open prey. I’ve been there. I’ve been the victim of such snake oil salesmen. I’ve been desperate enough to fall for some of these predators. I’ve wasted money on products that were supposed to “cure” me.

AdvoCare Spark Energy Drink

All of that puts me in an awkward position because I know what all of us who are ill are thinking when we hear the words “I’ve found something that helps me”. When my girlfriend sent me a package in the mail with a letter about this great new product I admit that I was skeptical. My first thought was “yeah right”. I shoved it aside and added it to the category of yet another fake claim. I wasn’t gonna fall for that again. However two things tripped me up this time. Number one it was from a close and personal friend who I have known my entire life. I knew that she was not a snake oil salesman. Number two the ingredients in the products were things I could pronounce and had heard of before. I put the packets aside for a few days and gave all of that some thought. During that period of time I also did some research online. I decided to give the products a shot. I had 3 packets with instructions to use one each day. After the second day I could tell a slight difference. I noticed that I was feeling a bit less fatigued after drinking it. I looked forward to trying the third one. I could really notice a marked difference in the before and after. After those three packets were gone I paid attention to how I felt in the  days following – when I didn’t have them to drink. I noticed each day I seemed to be slipping a little more back to my old self. I talked with Ron and told him about how I felt before and after the Spark. I talked to my friend who sent them to me, Tina. I asked her more about her experience with the product line, AdvoCare. I know her well and knew that she has suffered with migraines for years. I was curious what she would have to say about her headaches. If you know me then you know that headaches are something that I am very familiar with. When she told me that she had not had a migraine in 3 months I was especially intrigued. If this had been a stranger I probably wouldn’t have believed them. But because we have a history I believed her. I have no reason not to. And at this point I had experienced the difference myself.

I am on Twitter 24/7. Most of my friends on Twitter are fellow Spoonies, like me. I began thinking about what a tremendous gift this product and complete product line could be. If anyone knows me personally I hope that they know that I want nothing more than to help others. I believe the purpose behind the struggles in my life, including my Fibromyalgia, is to help and minister to others in similar situations as me. I knew if this was available to my friends their quality of life could be improved as well. I talked to Ron and we decided that helping others is what God has called me to do through my illness. We decided that I could be do that by sharing my experience and providing the opportunity with fellow spoonies around me that I come in contact each day. So I have now been an AdvoCare Distributor for the last 2 weeks. I have been sending out samples of Spark to those I know could benefit. My heart is soft toward all of those in my plight. I want to shout it from the rooftops that I have something that can help. I want to tell everyone about it. I am not a snake oil salesman. This is not a means to make money. The money is truly the last thing on my list. I only want to help my friends to feel better. It’s that simple. The product line is endless. There is something for everything. Spark has lit a spark in me. It has given me energy back. I call it a glass of energy. The last year has been a hard year for me because of my Fibro fatigue. But the Spark has truly gotten me moving again. I am not 100% better. My Fibromyalgia has not been cured. I am not pain free every day. I could not go out tomorrow and run a marathon. But I feel better. If you suffer from a chronic illness then you know any degree of feeling better is a victory.

Advocare Blender Bottle

I want to help you. If you have not already received a sample packet from me please let me know. I would be glad to send you one. And each person who places an order on my AdvoCare site in the month of June will receive a gift from me. I will send you an Advocare Blender Bottle free. Advocare is a product I believe in and all I want to do is share it with you. If you look in the left sidebar of my blog you will see the Advocare logo. Under the logo it says the words Health, Hope and a Future. That’s what it is providing for me. And it’s what I want to share with you. You can click on that logo at any time and it will take you directly to my Advocare site where you can place an order.

 

An Unhappy Patient

Let me just begin by saying I am not happy! I have been taking Neurontin since I was first diagnosed with Fibromyalgia in 1998. That is 13 years. That means for the last 4,745 days of my life I have taken Neurontin. Got That? Hold on to that information.

Now, my doctor’s office does not call in refills. You must have an appointment each month (pain management doctor) for refills. Neurontin is one of the meds that I take that I get 3 refills at a time. That means that every 3 months I get a new refill for the next 3 months. So, I ran out of N on 5/16 and contacted my pharmacy to have it refilled. When I had gone to the doctor the end of last month I did not receive my refill (Dr’s oversight – yes?). If you know anything about Neurontin you know that it is one of those medications that should not be stopped without a doctor’s instructions.

Well as is typical for a pharmacy contacting a doctor’s office, there request was ignored on 5/17. I was willing to go without it for a couple of days for the doctor’s office to get it’s act in gear – even though I figured they hadn’t. It should be pointed out here that I am never one to break their guidelines by asking for special attention or anything of that sort. They require you to take your empty bottles to each appointment so they can count the meds for your chart. I have never forgotten mine. I cannot recall any other time that a pharmacy has had to call in for a refill. They are usually really good about keeping up with my refills even when I’m not.

So, as I was saying, I gave the office a couple of days to get around to approving the refill – knowing that I had an appointment this coming Friday. HOwever, I also know that this would be 10 days WITHOUT my medication. SURELY they would call it in. I went in to Target (fab pharmacy by the way) on Friday (5/20) to check on it. They still had not heard ANYTHING from my doctor’s office. I got on the phone to the office and left a message. This was now day 4 without the medication. I received a call TODAY from the doctor’s office saying they would NOT be calling in the refill since I had an appointment on Friday, the 27th. I explained to the girl the situation and that I had been without the med because my refill was not given on my last appointment as it had been. She said she would talk to the doctor again. YOu know I figured I had already been without it this long so what’s a few more days because I KNEW it would take at least 2 more days for them to get around to talking to the doctor and getting a response. By then I would be standing in the office anyway.

So, I decided to do without it. I have made a note of the timeline and am gonna go in full of information to Friday’s appointment – completely withdrawn from my Neurontin – and let them know I am not happy. I will do that, of course, AFTER they shoot me up with needles full of Botox. (I’m no dummy!)

My point is that I am a good patient. I follow all the rules. I understand all the rules. I know that my entire medical and medication history is right there in their computers. I realize that things are overlooked but do me right! When you open up my file and see that my last prescription was now OUT and a refill was not written THEN GO THE EXTRA MILE FOR ME AND CALL IN MY MED SO I AM NOT IN WITHDRAW!! Now I am mad…good things do not happen when I am mad. I appreciate the good care that I receive from this doctor’s office. However, this time the typical “no rush” attitude that most doctor’s offices seem to be famous for is not setting well. I am paying your salary! I expect you to bend over backwards for me on the rare occasions that I need you.

(Now it should be pointed out here that the “doctor” I have been seeing for regular treatment for a couple of years now is one of my doctor’s P.A. This is not my beloved Pain Management doctor who I have such a wonderful relationship with. However, I will be talking to HIM about this incident Friday as he will be the one giving me my injections. And he DOES bend over backwards for his patients. I assure you that THIS will not happen again. Mostly because from now on I will be seeing HIM regularly and NOT the P.A anymore.)

They Are “Reasons”…Not “Excuses”…Right?

This has not been my most successful week of 3 in 30. I do, however, have a reason for that. To most people that may be read as “excuse”. But to me it explains why something did not get done and that sounds like a reason to me. So there! My parents came to visit last weekend. YAY! However, that means that I spent 4 days going non-stop well past my threshold each day. Therefore I have spent the entire week trying to recouperate from that. It has taken me until today to feel well enough to even consider getting out of my house. THAT will not happen though because it is raining and nasty and there really is no need for me to be out there in it. Now that is a true “reason” – wouldn’t you say? If you don’t think so please don’t tell me. Just agree with me and we’ll all be happier.

So, I am a bit behind on that blasted laundry. For the first 3 days of the week I didn’t even THINK about laundry (or the computer, for that matter. And that is BAD!). So I am now trying to catch up. Thankfully I have a wonderful husband who jumps in and helps me whether I ask for it or not. The kids, however, I have to use guilt to motivate them. Since I try not to do that then I get nothing from them unless I am physically and mentally prepared for the whole bargaining and arguing thing. I do remember telling Michael one day though that “when the pile of towels in your bathroom hamper reaches the top of the shower curtain rod it won’t kill you to wash a few”. Not sure what method I used there. Needless to say it didn’t work though. So, I am thankful for my fabulous husband. He is my right arm, my left arm, my right leg, my left leg, (“do the Hokie Pokie…that’s what it’s all about..”) and my brain most days. Since I am feeling better today I am keeping the washer and dryer hoppin’ to catch up.

I had plans this week to meet Alli for lunch. But clearly I haven’t been up to getting out. But I spent the entire weekend last weekend out and about with my mom. So I think that counts as getting out of the house and spending time with a friend, right? Let’s just go with that! WOO HOO – A GOAL I ACCOMPLISHED THIS WEEK – even if it was my mom!

When I am in a flare I can rarely put two words together to form a complete thought. So, exploring ways to improve my blog and/or turn it in to a money making venture has not occurred. At least I don’t think it did. It may have though. I was on a forum at some point discussing ways to match up my blog with companies to advertise for. Let’s pretend like that happened during this particular week, ok? Otherwise I’ll feel completely like a 3 in 30 failure. Now I just need to remember what forum that was on so I can go back and follow through with the suggestions. Hmmmmmmmm

Next week will be a better week. I will have a much more positive 3 in 30 update to post next Friday. I am already planning the week out. Let’s just hope my Fibro doesn’t bust through the door and take over my life again. And by bust in I mean like, with a bulldozer, kind of bust in.

Fibromyalgia and Sleep – Two Systems That Have Got To Work Together

May 12th Fibro Awareness Day

Today is Fibromyalgia Awareness Day. Once again I had big plans for this week for Fibromyalgia Awareness Week. But once again Fibromyalgia had a different plan in mind for me. How typical! It started Sunday night at bedtime when I realized I was out of Ambien. I grabbed a handful of Benadryl and Zanaflex and headed to bed to make the most of it. The most of it lasted for 2 1/2 hours of sleep for that night. Needless to say there was no stages 3 & 4 sleep in those 2 1/2 hours so my body did not get the proper amount of rest it needed to refresh itself for the next day. So the next day I managed as best I could to get through the day, knowing that I would have my Ambien back for Monday night. However, Ron got to the pharmacy after they closed Monday evening so I had a second night without my Ambien. I loaded my hands up with more Zanaflex and some Sominex. So I was tired, sleepy, near tears, took too much medicine and got nauseous and just to make things extra fun I got a nice helping of RLS too. However, I did sleep better. Yesterday I convinced Ron to go to Target pharmacy at LUNCHTIME to give them plenty of time to have it all ready. Thankfully last night I got a full night of sleep with lots of time in stages 3 & 4 so I woke up much more refreshed this morning.

IF you are at all familiar with Fibromyalgia you probably know the very basics about it – the pain and the fatigue. Those are the most common complaints associated with the condition. The most common means of treatment are medication and exercise. But other than those the most natural form of treatment is a full night of sleep involving all 5 stages of sleep. It is in levels 3 and 4 that our bodies slow down enough to restore and recharge our body systems. Our bodies produce hormones during these stages that encourage tissue repair and recharge our immune system. Without those two levels our bodies do not fully rest – we do not get the proper level of recharging or the correct amount of hormones to repair tissues and muscles needed to give our Fibromyalgia bodies/muscles a fresh start the next day. Without proper sleep (all 5 stages) your body is basically giving up on itself. Another problem for those with Fibro is a lacking of the serotonin level. Serotonin levels effect our moods (why most of us with Fibro are also clinically depressed) but it also aids in our body reaching those deeper levels of sleep.

So Fibro isn’t just about pain and fatigue it really starts in the brain. And no I’m not saying it’s “all in the head” like some doctors believe it is. But I am saying “it’s all in your head” because that’s where the chemical reactions take place that affect our sleep patterns. A little medicine can correct that though and you can live a somewhat normal life in the means that something is available to try to correct those chemical malfunctions. Don’t be afraid of medicine. We need it. It can make our lives easier and less stressful on our bodies. It can do a body good! Medicine is not the enemy. It is our friend. Finding the right combination is the key for each person’s body.

I don’t recommend running out of Ambien though…..EVER!!!!! BEcause just because it’s not all “in your head” doesn’t mean it’s not all “in your head”.

Fibro and Goals….A Good Combination

WOW! It’s amazing how much a person can get done when they aren’t in Fibro-Flare. I have kept up with my 3 in 30 goals all week. It’s been really nice to have something to think about other than pain and fatigue. The pain and fatigue take over your mind and it’s so hard to pull yourself thru it. You just have to wait till it eases enough so you can use what little energy you can find to pull yourself up and get on with some semblance of normalcy. The key is to not put so much pressure on yourself so that guilt eventually plays a role. I’m so bad about saying I’m gonna do something, which ends up getting canceled, and then allowing the feelings of guilt to creep in and take over. Guilt only leads to negative self talk. Negative self talk leads to depression. Depression puts me back in bed and the ugly cycle begins all over again. So the goal is to control your thoughts at the beginning so that the downward spiral isn’t even in the picture.

For example, I have had the laundry on my 3 in 30 goals list for months now. The goal is simply to do ONE load a day. That seems to be something that I can manage even if I’m in a flare. And accomplishing that on bad days makes me feel like I have done something productive. Just doing that one thing helps me to hold the guilt at bay so that I’m nowhere even close to the spiral. I am a housewife and a stay at home mom. My job is my home and family. If I can accomplish one task required in my job description then I feel better about myself as a person. It’s easy to allow ourselves to just give up and lay in bed and beat ourselves up. That’s the easy part. The hard part is to get up and make ourselves do something – just one thing (in my case it is one load of laundry a day). I notice that I feel better about myself  mentally. So that one load of laundry can change my whole day. I may go straight back to bed after putting it in the washing machine. But I go back to bed feeling better about myself.

The second goal is also healthy for me mentally. The second goal is to get out of the house and visit with a friend IN PERSON at least once a week. This week I visited with Suzy after she got off work one day. I’ve mentioned Suzy here numerous times. This week when we met it was so I could pick up these bracelets that she made for me through her Etsy shop, That’s 2 Darn Cute.

She made this one just for me - It's a Seminole bracelet - with the NOLES colors, garnet and gold!

This is the Pam bracelet made for me - you can find it in her Etsy shop

So by scheduling a visit with Suzy I had to get up and get myself ready and leave the house. It’s so easy with Fibro to stay locked up in the house all day. But I’ve discovered if I am able to get a shower and get dressed sometimes it energizes me to be able to go out. Now sometimes showering has the opposite effect and forces me back to bed. But if I’m able to get out of the house it does so much  for my emotional state. Then visiting with a friend allows me to touch base with someone who means something to me. It takes my mind off of myself. Besides that it’s just fun to spend time with a friend. It’s easy for us with fibro to feel like we have no friends. A lot of times our friends are our saddest loss that comes along with our illness. Friends like Suzy help me to know I’m not alone. I also have other friends that love me as well. They help me to feel less alone. through the month of May you will meet them because of this 3 in 30 goal to meet with a friend once a week.

Lastly, I’m working on finding ways to transition my blog from a personal diary to more of a marketing tool along WITH the personal diary part. That is a learning process. Learning something new isn’t easy when your brain is all foggy. But I’m doing it. And it’s making me actually FEEL smarter. Not sure that’s something that someone without Fibro could understand. But if you click on this link you can see what it’s like to use my brain to learn something new. It ain’t easy, darlin’!

So overall week one of May’s 3 in 30 goals is going well. It’s not only changing things around the house for my family but it’s changing me. It’s changing how I handle my illness. It’s changing how much I allow my illness to control me. That is my favorite benefit of all. I wanna be in control again. I’m fighting for that. That is the 4th goal! And that one is going well too.