So This Is What It Feels Like To Be A Contributing Member of My Family

I have been feeling much better the last couple of weeks. And things have changed dramatically around here. I’m finding that I can do a lot more than I thought after getting the house to the point where a mild level of maintenance is what I have to do each day. Last week I got myself back on my regular Advocare schedule and have been feeling considerably better. I spent a couple of days getting the house in order. And I’ve merely been working on keeping it that way a little bit at a time each day.

I have even begun doing all the evening cooking. Well, I say all of it, but it’s actually just the weeknights. Ron still gets the weekends. Honestly when you are feeling pretty good then just sitting around is difficult. When you have energy again after spending so long with out it then you want to take advantage of it and get up and busy.

So I have a menu chart up on the fridge. I’m not as organized with the cooking yet as I plan to be. But I’m taking this one step at a time. I’m moving into the organization level little by little. The next part of the plan is to add a second sheet to the fridge for a grocery list based on the menu plan. I am enjoying knowing that my family knows what time they can count on dinner every night (5:30). And it’s nice that I’m keeping up on the chores in the kitchen so it’s not always a big mess of dirty dishes. It makes the kids chores of doing the dishes at night much smoother of a process.

I’ve been searching some home organization sites to work into my routine. I just feel more in control. I still have some bad days with my fibromyalgia. But I’ve discovered if I keep on top of my Advocare products and my regular medications I feel almost normal most of the time. This is really what I’ve wanted for so long. I just wanted to be a regular providing member of my family. I wanted to be more of a help than a hindrance. I’ve noticed that Michael and Lauren respond better to the family unit when things are run smoothly with me taking part.

I’m not completely where I want to be yet. Eventually I’d like to be one who can lunch with friends and/or go to church regularly. I’m still on a day to day basis with that part of my life. But the part of my life INSIDE the walls of our home is coming together.

God is good to provide me with the means of access with items that are working wonders for me. I think if you were a member of my family you could see the big difference. The other day Lauren said “You’ve been doing a really good job of being the Mommy lately. You’ve been doing a great job cooking. The living room is staying clean. I noticed you cleaned out the fridge and are keeping up with dishes. And I noticed you organized the closet upstairs. Keep up the good work.” HAHA! And I notice that I’m getting cooperation around here without having to BEG for it or have Ron do the asking. I’ve also picked up on some much needed and greatly appreciated affection from one of my kids. I think they other will come along with time.

I am forever grateful for my friend who told me about Advocare. It’s making a HUGE difference in my life. And I’m not writing this as an Advocare marketing piece. I’m writing it as a way to share the amazing things that are happening for me. After being so sick for so long, I had pretty much given up hope of getting back on a path even close to normal. But God has provided a way. And I’m thankful for my friend who introduced the way to me. I’m winning! And I’m eternally grateful for providing a means to insert me back into my family and my job as homemaker.

Occipital Nerve Block

Well the headache relief saga continues. If you remember, last November I had Radio Frequency Ablation done on the nerves in my neck. As a brief explanation, this procedure burns the nerve endings to break the pain cycle. But my headaches seem to originate in the Occipital nerve on the back of my head. Here is a diagram of the location of the Occipital nerve.

The treatment for headaches from that specific location is an Occipital Nerve Block. So I had that procedure done today. Here is a 3 minute you tube video of what my doctor did today. This video is showing it done on only one side. I had it done on both sides. (If needles make you squimish you might not want to watch the video)

So now we wait. My entire head was numb for most of the afternoon. Imagine how your mouth feels after you finish at the dentist. That’s how my entire head felt.

I’m not sure what is next if this doesn’t work. I’ve had nerve blocks done before (many times). Sometimes they work and sometimes they don’t. Two years ago when I had the RFA procedure done I got great results. This time the results haven’t been as successful. I’m hoping the combination of the RFA and the nerve block will do the trick.

My Fibromyalgia manifests itself mostly in my upper back, neck and shoulders. My headaches are the result. A daily headache gets old after a while. I can live with it. I’ve lived with a daily headache most of the last 20 years. But I love that my doctor is not satisfied to accept that. He has hope for both of us – which is a good thing because I’ve pretty much accepted that it’s not gonna get better. I’m not trying to be a Debbie-Downer but that is the reality of my feelings.

At any rate, that’s been my day and my newest treatment procedure. I’ll keep you posted on the results. Who knows – maybe this time will be the time it works.

 

Be Your Own Advocate

I have some really great notes from Bible study last week. Don’t get excited yet though. Today was my procedure (I wrote this last night) so not many thoughts are getting through the pain I’m feeling at the moment. I’m hoping by tomorrow afternoon I will be feeling well enough to think through the pain. But last week’s lessons were on Peace. WOW! God sure has perfect timing, doesn’t he? He knows what we need when we need it. The only thing about that is that this week’s lessons are on Patience. Uhhhhhhhhhhh – I don’t wanna need this lesson right now. Know what I mean?

My favorite doctor - Dr. John Nwofia

Today’s procedure went much better than the right side I had done 2 weeks ago. When I was wheeled in I told her (again my regular doctor wasn’t in my office this week) that we are gonna have to have a LOT more lidocaine this time. I told her that when Dr. Nwofia did this procedure last year it didn’t hurt nearly as bad as it did 2 weeks ago when she did the right side. So, I said, this time we’re gonna use a WHOLE LOT MORE LIDOCAINE! She said Yes Ma’am. I’m sure she didn’t like hearing that kind of thing. But I know what my body needs and I have learned to speak up about it. And honestly it is empowering to be able to walk into the doctor’s office and tell them exactly what I need. I know that Dr. Nwofia appreciates that relationship. However, he’s in his other offices so much now that I have been having to see other staff members. But I’m continuing taking control of my medical care with my Fibromyalgia/Chronic Pain. I figure I don’t have a right to complain if I am the one that told them what I need. I am not one to speak up for myself. But the last 3 or 4 years I have really learned how to do that. I have a lot of great support and a wealth of access to other Fibro patients via Twitter. So, I have learned a lot. I see how other people are suffering by not speaking up and that has challenged me to take control. I also saw a big change in myself concerning dealing with medical personnel when my dad was so sick. I learned to speak up for him and advocate on his behalf. That taught me the skills I need to do the same for myself. So if you are a patient with any kind of chronic illness SPEAK UP! Be your own advocate! Don’t let the medical world run over you. Stand up and put your hand out to stop them. Tell them what you need. Worth WITH them instead of being a doormat (which I was for so long) and catering to their egos (some of them have VERY BIG EGOS). Do your research, write down what you want to ask about or what you want to try and then talk to them about it. I’ve found that they respect me a little more when I go in armed with knowledge. Of course learning how to SAY/ASK about those things is a completely different matter. But a little practice will teach you how to go about talking to your doctor. I have a friendly kind of relationship with my doctor so we just sit down and chat together. If you have a doctor whose EGO is bigger than their heart it’s time to find a new doctor!

Be your own advocate! If you aren’t then who else will be!

See you in a few days with a Bible study entry.

Childhood Athletics and a Healthier Life

What a week! This time last weekend I was dreading this week because I knew I was having my RFA procedure again (explain that in a minute), had soccer games to go to and Ron was gonna be out of town. But some how I survived it and I didn’t even get stressed out. THAT is a God thing for sure!

Lauren’s final high school soccer season ended Thursday. They are playing in the District Tournament on Monday this coming week. But until she picks a college and we get her there she is done with organized soccer. I feel very good about it. Putting a child into an organized sport is so good for them. They learn so many skills – not just athletically but also a lot of character building skills. Our kids have played sports their entire childhood. I know that will serve them well for the rest of their lives. They learn responsibility, how to work as part of a team, self-control, anger management (wait that was MY lesson), how to live a healthy active lifestyle. All of are skills they will use in every area of their life for the rest of their lives. And I have no doubt we have set a standard for future generations in our family line.

Lady Eagles Soccer Seniors of 2012

Last fall I had a series of medical procedures done to help treat my daily headaches. It’s no surprise to any of you here that I suffer with chronic pain daily. If you’ve even stopped by my blog once you’ve probably picked up on that. The procedure I had done is called Radio Frequency Ablation (RFA). I went to my previous blog entry from last year where I talked about the process. I could pretty much write the exact same words to explain the procedure itself and my reactions during/after it to a degree. However there was one significant difference. Last year both procedures (one on each side of the neck) threw me into a major Fibromyalgia flare up for at least a week afterwards. This time for this first round it really only put me out of commission for 1 1/2 days. I even had a different doctor do it this time (not my choice) and there was MUCH more pain involved. What’s different about this time? The only thing I’m doing different this time is using the AdvoCare. For the last 5 1/2 months I have been drinking at least one Spark a day, taking daily doses of CorePlex and using the BioTools product daily. In some obvious ways, I can tell a big difference since I began using AdvoCare. And at times like this, when I would normally be in a flare, my health has improved dramatically.

Well, this coming week is Fall Break. That may mean a break from school for the kids. But I think that means the opposite for the parents. So, I’ll see ya when I see ya!

With Fibromyalgia, Stress=Pain

Today’s guest post is written by my Fibro friend, Felicia. I originally found her on Twitter and am now a regular reader of her blog FeliciaFibro. She is 29 and has been diagnosed with fibromyalgia for 10 years. She has done a lot of research on Fibro, treatments and shares what she has learned about living a full life in spite of the fibro. Please swing by her corner of cyberland for a visit. Tell her Pam sent ya!

With Fibromyalgia, Stress = Pain

I’ve been under a little more stress lately, with the loss of a friend, sickness of a family member, preparing for a big trip, out of town visitors and local guests, making sure I have all the posts that I need, along with life’s usual stressors. I wouldn’t say that I mentally feel stressed out since I’m an organized person, but my body sure does! I’ve been sleeping even worse than normal (I only got a few hours of sleep last night), my upper and lower back and  left shoulder have been hurting consistently and my wrists and left knee have been more easily aggravated, thus hurting more than normal. I’ve been having more constant, dull pain and also getting more shooting pain and pins and needles like pain. I’ve also been dropping items out of my hands more and having more tummy issues (cramping, getting sick) because of my IBS.

It can be difficult not to add even more stress by being mad at my body for not being able to keep up with all the tasks I want to get done in the time frame I want them done. Over the years, though, I’ve learned that I need to be cognizant of what is going on in my body, make as many adjustments as possible, and keep moving forward. Being an organized person helps me get through this.

For each major task, like preparing for a trip or visitors, I keep a to-do list. Each time I look at my list I evaluate how I’m feeling and what type of tasks would be best for my body to tackle. Then I start getting things done and crossing them off my list. Doesn’t crossing things off a list always feel good? I usually start using those lists ~2 weeks in advance, so by the time the list needs to be finished I’ve usually managed to get most of the things done. I may have approached the list 50+ times at that point.  If my body is not feeling enough to do some of the remaining tasks I then decide if they really need to be done and if they do, I ask The Helpful Hubby to do them.  Luckily, he almost always obliges!

How do you keep your stress at bay?

Fibro Paradise

You start noticing your typical pain is becoming a little stronger. Where you usually are used to having a headache and may not even notice it a lot of the time right now you are noticing it is getting worse. About 15 minutes later you start feeling more pain in your neck and upper back. Not too long after that you notice your low back and hips are joining in the “fun”. Very soon after that your legs and arms make themselves known. What is going on you wonder. You wonder what you are doing to cause your whole body to feel like it’s one giant bruise. So you kick back on the couch to rest and turn on the TV and this is what you see:

This explains a lot!

Now it is all perfectly clear. A storm front is moving in. If you had stopped to think about it you could have to your friends and family long before the weatherman ever did.  The rain may be the friend to our farmers and to our lawn and beautiful flower beds but it is no friend to the person with Fibromyalgia.

If you have done any research into Fibromyalgia at all then you know that rain is not just rain, it is pain falling from the sky. When a weather front moves in the barometric pressure changes. When it goes down the pain goes up. Barometric pressure brings with it moisture (rain, sleet, snow), wind, humidity, extreme cold, extreme hot. If you stop and think about it you can probably connect your Fibro Flares directly to the weather. If you kept a record for one month of you pain levels each day you would find that you changes in pain levels will directly correlate with the weather changes.

Generally I can tell when a system is at a certain location in relation to where I live. And I can also tell you when it is a certain distance away from where I live. Michael once asked me “Mommy if you were closed up in a room with no windows and no TV could you tell what the weather is outside?” Of course I said YES!!

I’m sure I’m not telling you anything you don’t already know if you have Fibro. If you do NOT have Fibro though and are reading this entry I hope it will help you to understand what your loved one WITH Fibro is going through. Please take this little tidbit and use it to better support them. That’s what I’m here for, to bring awareness to Fibro so that we can all support one another.

The solution for me is to move to a place were it is 75* all the time, never rains and has low humidity. We should build a Fibro village there. We could call it Fibro Paradise. I’m going to pack right now…..

 

In A Word…..Headaches (Too Many Questions & Not Enough Answers)

If you have read any of this blog in the last 6 years then it should be no surprise to you that I deal with a headache every single day. Some days are better than others. Some days if I don’t give it too much thought I can not think about the nagging pain in the brain portion of my body. Some days all I can think about is the pain in the brain – I have no choice.

This is what it feels like!

The question that has troubled me for the last 27 years is what kind of headache is it. That is a really difficult question to answer. There are a few question those of us with a chronic illness of any kind find almost impossible to answer, which is even more frustrating than the actual question. Some of those questions are: How are you? How are you feeling? Why are you depressed? What has happened to cause this pain/feeling? On a scale of 1-10 with a 10 being the worst pain you’ve ever experienced in your life what is your pain level?. And for those of us with chronic headaches – Where does it hurt?

I realize it is frustrating as a caregiver or a friend/family member who is sincerely concerned about how we are to try to get information from us on how we are feeling. And honestly we don’t want you to stop asking us. It’s just frustrating to us to have to come up with a different way to say “I feel like something you would scrape off the bottom of your shoe” each day. I suppose there really isn’t a “good” way to ask how we are. If/When we come up with one we will let you know. Until then we will just keep saying “fine” or “ok” or “my pain level is a 20”.

At any rate, headaches! There are so many kinds of headaches that it’s hard to pinpoint exactly which category I fall into. Which category does a 27 year headache fit into exactly? Tension? Cluster? Migraine? Hormonal? Rebound? Sinus? My answer would probably be ALL OF THE ABOVE. Trying to get relief from an “all of the above” headache is like a blind man trying to through a dart and hit a bullseye from a mile away. Eventually you just give up and admit that there probably is nothing that will take them away. Sure – there are ways to get temporary relief for a short period of time. But after this long a person just gets tired of being the guinea pig or lab rat. After one disappointing result upon disappointing result you just accept that your lot in life is to live with a headache every day till the day you meet Jesus.

It’s frustrating! It’s infuriating! You feel defeated and betrayed by your body. All you can do though is learn to live with the pain – learn to function AROUND the pain – work at trying to put a smile on your face and make it be believable – find the things in your life that you can be thankful for and attempt to focus on those – and try to exhibit some self-control when the next person asks you why you are in pain or have a headache. Honestly, most days that last one is the most difficult for me.

I have to recognize that most people just don’t get it. And for them they should be grateful that ignorance is bliss.