Tuesday, May 10, 2011

A post by Alexx

So today has been a relaxing day of doing nothing up until I have to go to lifeguard training at 4:30. Yesterday was mothers day and before I even get a chance to call my mom she texted me to ask if she’s a good mom. I reply saying of course she is. My mom is probably the best ever, always listening to me when I need her, never judging me, and always helping me in a tough situation even if it means lying to my dad. The list is endless. Anyways, after I texted her back yesterday I never heard anything in reply. I called once and the call wouldn’t go through and so I just left it alone thinking she was having a tough fibro day again. (If you don’t know what fibromyalgia is look it up) I called last night before going to bed and my stepdad tells me she is on the phone with their pastor, so I go to sleep. Wake up this morning and call again, no answer. Finally am able to talk to my mom and she seems to be fine. We start talking about my new job for the summer and I’ll admit I start to get a little frustrated but never did I yell. My mom gets mad at me and blows up for “yelling”. I may have been stern about a few things but never yelled. The next thing I know my ear is being blown up by my moms words and she hangs up without letting me explain. If someone does read this, the whole point of this long explanation is I am tired of fibro eating away at my mom. She has her days when she is the same mom I used to know but it kills me to listen to her get so upset that easily. It may be due to other issues in her life but fibro just adds to the struggle. Imagine waking up one morning with your mom seemingly lifeless and laying in bed all day not being able to help her feel better. Or her being in pain and wincing with every step she takes. My mom still smiles as much as she can but there is always that constant worry and wonder of how she is feeling. Not living in the same state as my mom and only being able to talk to her on the phone everyday and worrying about how she will sound when you talk to her, well it just adds to how much it sucks for this stupid fibro to eat at my mom. Yes, fibro is not a lethal disease, but it can eat away at a persons character and to me that is one of the worst kinds.

Wednesday, May 4, 2011


Christmas, Easter and Fibromyalgia awareness day

Ok let’s play a game here, ask 3 friends if they have heard of the 3 items listed. I would bet bottom dollar that the vast majority do not know the 3rd day exists. (its on May 12th for those who dont know) So what does this mean is it really an important day? Is it really important to make people aware of it? Breast cancer has a whole month dedicated to it and has it help that cause? Well besides the millions of dollars it gets in donations during that month, what has the month done has it brought a cure? And why would we for one second believe that an awareness day once a year on the calendar is going to change any thing? Who knows anything about this day I think it is a secret, want proof?, go to Google and type in awareness days 2011 and let me know when you find it listed, I went through 12 pages before I quit after I learned about queer, puppy mill, Ct. ski council, international vulture, singles and penguin days, that’s right all of these are list if not once multiple times from page 1 thru 12 on the awareness days for this year but not one single mention of fibro day. So really why should we care? As a community we are just trying to survive we are trying to just get thru one more day, as spouses we are living awareness day every single day (let me preface these next statements, all of you reading this that have fibro you do not need awareness as you are the one living it day in and day out). Why would I say this, ask a spouse the following questions, Do you wonder how I am feeling this morning this afternoon this evening? Are you frustrated that we can no longer -- ---- (fill in the blank)? When I feel bad do you wonder if I took my meds, do you say to yourself I hope this isn’t going to be a bad spell of pain for her, do you get frustrated because everyone of the friends you have always ask how I am doing, but never wonders how the husband is? Do you get tired of every time you show up somewhere alone the first question asked is “ how is your spouse and where is she will she be here today” ok I know it sounds like a pity party it isn’t really it is just the fact that no one is truly aware of what goes on in the houses of people with fibro, they see only the glimpse of it’s a bad day, or she feels bad enough to stay home and miss this, must be like a 24hr flu bug. I mean what does awareness really do for the cause everyone of us is aware of how are lives have changed but not one of us know what tomorrow is going to bring. I know my wife isn’t looking for someone to take pity on her because this one special day is coming up, and I don’t think I have one single person I have come in contact with in the past year that doesn’t know someone with Fibro, and everyone has a cure except the CDC or FDA except lets pump them with some new meds and see if this will work this month. What does awareness mean and how many of us really stop and learn about the cause on awareness day? I do research every week on news and info about fibro and I am no more aware of what is truly going on then the person who just found out today as we read this that she has fibro is aware of how life will be forever changed.
Let’s for one moment forget about fibro awareness day and ask what can we really do to change the mind set of the people in America and the world to help them understand what this disease truly is. It is a terminal disease (check Webster’s, Wikipedia, medical dictionary) I will let you look up the definition to see if I am right, So why don’t we as community of survivors and spouse start contacting our senators, our doctors , who ever we need to to have it changed and then maybe we could truly get the recognition it deserves and maybe even the funding to find a cure instead of some new medication. ( its not that i am being negative by trying to label it as terminal, I just want to feel as though the medical community takes this seriously and puts the funds to finding a cure, or at least the cause so we can see movement towards a cure)

Well I guess is should end this here but before I do I am asking a favor of all of you, if you are a spouse take note you are not alone, if you have fibro I have no clue what its like but I love my wife and I live the repercussions of this disease, and most if not all of us who are spouse do truly try to understand but some days we just cant, if you are a friend I understand you get frustrated at how we don’t show up some times and most times we are late getting there and its hard to get us to commit to anything, understand this isn’t how we want things either but we do understand when you lose patience on us as we lose patience's with ourselves. Please feel free to post a comment and lambs baste me for what I have written or just leave Lynn a comment


Monday, May 2, 2011


This is why I love spring!!!

more pictures......well actually there are no pictures yet because i can't get them to download but i will keep trying...

These are some more pictures from our Golf tournament, BBQ and Auction.....plus some random flower pictures. I love this time of year working out in my yard. I just wish I had an unlimited supply of money to do what I wanted and could hire a crew of people to come and do the really big projects. I mean Jim and I could probably do them if.....my health was better, we had the big equipment and there were more hours in the day!

We also don't want to do too much work to the house until we find out what the airport is going to do.

A sense of me???

I am not sure if my title for this post will make sense to everyone but it does to me and hey, that's what matters!!! haha

I have no really good excuse for not posting lately except for it takes me about an hour to type a paragraph! It is getting harder and harder for me to get my words from my mind to here. It is like there is a brick wall and when it comes up it stays up and I have to fight to get the words thru. This will sound so strange but it is like I can feel the words in my brain and they are right there and they are fighting-stretching to come out??? I will type something and reread it at least 10 times and most times change what I wrote and go in a different direction.
The past couple of weeks I have had to send out emails concerning the MEXICO MISSION TRIP Jim and I are going on at the end of June. I have been driving him crazy because I have had to ask him to help me. By that I mean I will type a sentance and then ask him what he thinks and end up changing the whole thing. It is so frustrating to me!!!!

I was a District Manager for 15 yrs and would send out emails daily. I was a DM trainer and would deal with people from the corporate office all the time thru emails. I never had a problem!!! It is so maddening to me not be able to do something that used to come so naturally to me. (by the way, it just took me 23 minutes to write this paragraph)

I am knocking on wood right now as I type this.....since about the end of March my pain has not really been above a 5/6 except for a handful of days. My mornings as usual are still cruddy! This morning I woke up and I swear I could feel EVERY nerve in my body. I told Jim it felt as though they were back firing, or they were on fire! When he went to kiss me goodbye, he was being silly (which I really love for him to do and I hate that fibro tries to steal that from him) by being silly I mean he was just giving me a bunch of kisses really quick and I had to say, baby please don't. I HATE FIBRO!!!!!!!!!!!!!!!!!!!!!!!! He said ok and acted as though he was ok but I know he hates to hear me say that. He is so strong and is always there for me!!

OK now back to my tital....This past Saturday we had the first of our 2 fund raisers for our MEXICO MISSION TRIP. It was a golf tournament, BBQ and Silent Auction all together. I was in charge of the silent auction and I am so happy to say that we raised more money than we did last year and that everything was bid on except for 2 things. Last year there were roughly 20 people that went on the mission trip, this year we only have 8.
This is my first mission trip and I am so excited, nervous, scared and a whole bunch of other emotions. I need to explain something....Last year I wanted to go so bad but there was no way my body could have handled it, or my mental state!
Jim and I talked and prayed about it and said that if my body and frame of mind were in a better place that we would go this year. The group that we are going with could not be any better and I know that they will watch out for me. Make sure that I am doing ok and that I don't over do it. Going on the trip is our dear friend Paul (Jim's best friend and business partner)his son Nick, Chris Stegall and his son, (Chris is in our Bible study small group and is also a very dear friend)our Pastor and his wife Jaime. How is that for a group??? They have all seen the good, the bad and the ugly with my fibro! The have all prayed for me, prayed with me and stuck by me. As far as I am concerned it is a good group. Only thing that would make it better is if my daughter was going!!! Also it would be nice if Paul or Chris's wife were going. Well, there is always next year!

OK, OK, I still have not explained my tital....so here goes. Being in charge of the auction was the first thing in many years that I have been in "charge" of. I mean I came up with how I wanted to do it, set it up and so on. My pastors wife, Jaime was right there with me the whole way helping me. (we only had 2 months to put the whole event together)Anyway, I'm not going to go into all the nitty grity except to say that it was frustrating at times for me. After everything was all done and everyone was all gone, everything was picked up and packed away.....me, Jim, Jaime and Craig sat outside at one of the patio tables (the auction was held in the golf club house)and counted the money from the auction, went over receipts and just talked about numbers, how much money we made versus last year. I FELT LIKE ME!!!! It felt so good to feel normal!!

I AM IN CHARGE OF THIS TOO........so if you are reading this and want to donate something for our yardsale, please contact me...:)

Jim has been on several mission trips and when he talks about them his face lights up. Listening to him talk about the children in India and how he felt when he came back. He has said several times that he would love to take me there but that is just one place at this time I have no desire to go. Maybe one day???

Well, this has been longer than I thought it would be but it felt good to write something. Even if it did take me almost 2 hours to get it done..:(