Don't ask how I came up with this topic lets just say I was moved, but not in a good way, to think about what my family goes through. What are there responses & how this illness can also change their lives.I have to say this has been the hardest to go through, even harder then the pain & fatigue itself.
1st our significant others! Yikes so much to say..... Well they loose who they married... Then one of 2 things happen they leave you! SAD but true. He/she can't handle it & your on your own. If your lucky because this person loves you so, have morals, values & don't believe in checking out when the going gets rough. Ok Babe we r in this together! Yay for you & him/her! CRAP!!!! I say that because duh Thats not it there is the rest of your life or in my case I believe the rest if my existence. One minutes I'm a stay at home SUPER MOM, the next I'm in bed cuz I can't even get out of it & every night it's take-out, left overs, frozen meal or your husband is making Hamburger Helper for the 20th time. The cleaning is not done by you but by your husband but only on his days off because he worked 3 16 hour shifts that week.. Well nothing gets done. Then your trying to deal with each other both feeling helpless, both at times wanting to give up, both snapping at each other, etc. etc. etc! Right? Ok ok not always but sometimes.
Next our precious little people. The extension of ourselves. The best things we can contribute to this crazy world Our children! All I think please God don't let me screw them up. Lets face it this isn't a perfect world not a perfect person exists & we under the best circumstances, as parents, can only do our best. "I CAN'T" is all I seem to say to them a lot! I can't pick you up late please get a ride, I can't go to your game too much sun gives me migraines, I can't go on that school trip cuz I cramp up if I sit to long. Then there are the "Please can u". Please get me my meds, please rotate the laundry, please no friends over today cuz I have a migraine, please stir this cuz my hand & back r cramping etc, etc! They have to grow up so fast with a mom or dad like us... Good in some ways ...but bad because I'm suppose to be the one taking care of them. It hurts to hear your daughter's fear is she will loose u SOON!*tears* I hurts when your son's hopes everyday that this day u will be cured & never speak of pain again.
What-To-Do, What-To-Do? This goes for family member & sufferer!
Don't give up!
Try!
Thank Them!
Love them!
Love yourself!
Communicate(both of you)!
Listen!
There is always a bright side! No don't say no..Yes their is, there always is!
Wish but also Accept what is!
Ask for help!
Give!
Serve!
Rest!
Love, Love,Love, Love,Love, Love,!
Friday, October 5, 2012
Wednesday, October 3, 2012
Physical Road Blocks
It seems no matter what I do. I am either loosing weight like crazy...for instance 2 years ago I lost 52 pounds. Now I am 5 feet tall that was a lot to loose I went the gym worked with a trainer and watch what I ate BUT the Fibro was kicking my butt the entire time. Needless to say I have gained all the weight back. I actually don't know what I weigh right now. I tried to continue the gym but like I said "kicked my butt" to the point that I went into the worse flair up ever. I obviously can't do that much. One doctor I saw said do something everyday even if its only 5 minutes....Well I'm never going to loose weight that way. Another says YOGA YOGA....BTW I love doing it warms up my muscles and isn't going to put in bed for the rest of the week but for loosing weight no can do.
Another thing to consider is the medications we are on. Some actually will allow us to loose weight but most(like anti-depressants/Fibro meds) side affect is weight gain. I have had one doctor tell me is either you live with being chunky or live with the pain, that it was my choice........REALLY that is no choice at all as far as I am concerned.
Sooo I do what I can when I can. I eat healthy and in moderation. Yes I need to start walking and doing Yoga again but with two hospitalizations and 5 consecutive infections that part was not possible but so far so good. I have been okee dokee. Lets hope it last so I can get back to what I like and what works. YES that is my advise to you DO WHAT WORKS FOR YOU! What works for you?
Another thing to consider is the medications we are on. Some actually will allow us to loose weight but most(like anti-depressants/Fibro meds) side affect is weight gain. I have had one doctor tell me is either you live with being chunky or live with the pain, that it was my choice........REALLY that is no choice at all as far as I am concerned.
Sooo I do what I can when I can. I eat healthy and in moderation. Yes I need to start walking and doing Yoga again but with two hospitalizations and 5 consecutive infections that part was not possible but so far so good. I have been okee dokee. Lets hope it last so I can get back to what I like and what works. YES that is my advise to you DO WHAT WORKS FOR YOU! What works for you?
Wednesday, September 26, 2012
I'm Back
Its been over 18 months since I last posted a blog. First apologies are in order. It's been a hard year. I think I stopped because I became occupied with life, as we all do. What happened Feb of last year my mom decided to serve a mission for our church. Long story short me along with a lot of other wonderful people were working hard to make that happen and in July she left for 18 months and will be returning in Jan. 2013.
Well in this last year both my children hit there teens. I've had the worse FLARE-UP'S. I got so bad this last year that I had to start using a cane to walk. I sure hit an all time low. I went to a local specialist(arthritis) no help there. Finally went to Stanford University pain clinic, they referred me to a local clinic to be a part of a group testing a trial drug. It said to cut pain by 60%. We shall see????????? Now just waiting to see my insurance will cover. I started to see a therapist(Shrink). That has helped me immensely. My family Doc. changed or upped my medications. Truthfully this has been my first full 5 days where I am in reasonably in good shape.
Well in this last year both my children hit there teens. I've had the worse FLARE-UP'S. I got so bad this last year that I had to start using a cane to walk. I sure hit an all time low. I went to a local specialist(arthritis) no help there. Finally went to Stanford University pain clinic, they referred me to a local clinic to be a part of a group testing a trial drug. It said to cut pain by 60%. We shall see????????? Now just waiting to see my insurance will cover. I started to see a therapist(Shrink). That has helped me immensely. My family Doc. changed or upped my medications. Truthfully this has been my first full 5 days where I am in reasonably in good shape.
Friday, March 18, 2011
Beating Myself
Oh this is a tough one to write. I have realized something that I have been doing to myself making my situation worse, making my suffering harder. What am I talking about......
Let me start at the beginning. I have always been my own worse critic, the one to beats myself up when I make a mistake or forget to do something. I think stupid stupid stupid. I should haves all day long. I don't make mistakes... I can't make mistakes! How unrealistic does that sound? VERY! I didn't even realize I was doing that and how crazy it all was to expect nothing but perfection. So................
When I began to have symptoms and all the things I used to do to be that Super Mom had to be put to the side. I began the beating. I had nothing but time to think. I would think I was inadequate. I was not good enough to be valued or loved because I wasn't doing my part. In a sense pulling my weight.
I have been stricken with something that can't be explained and continues to remind me of it's presence. I have made it worse the illness has been hitting me physically but I have been hitting myself psychotically and emotionally. This is not my fault. This is not a sin. I am not making a mistake. It just happened.
OK! IT IS OK! I AM OK! I feel like the weight of the world has been lifted. It is time to reteach my mind. I am perfect the way I am. I do what I can...as much as I can & that is OK...that is down right fabulous. I will learn that the positive is the best medicine. The most important thing I will relearn is the love that my Lord Jesus Christ has for me....he WILL make up the rest.
Let me start at the beginning. I have always been my own worse critic, the one to beats myself up when I make a mistake or forget to do something. I think stupid stupid stupid. I should haves all day long. I don't make mistakes... I can't make mistakes! How unrealistic does that sound? VERY! I didn't even realize I was doing that and how crazy it all was to expect nothing but perfection. So................
When I began to have symptoms and all the things I used to do to be that Super Mom had to be put to the side. I began the beating. I had nothing but time to think. I would think I was inadequate. I was not good enough to be valued or loved because I wasn't doing my part. In a sense pulling my weight.
I have been stricken with something that can't be explained and continues to remind me of it's presence. I have made it worse the illness has been hitting me physically but I have been hitting myself psychotically and emotionally. This is not my fault. This is not a sin. I am not making a mistake. It just happened.
OK! IT IS OK! I AM OK! I feel like the weight of the world has been lifted. It is time to reteach my mind. I am perfect the way I am. I do what I can...as much as I can & that is OK...that is down right fabulous. I will learn that the positive is the best medicine. The most important thing I will relearn is the love that my Lord Jesus Christ has for me....he WILL make up the rest.
Wednesday, February 16, 2011
Hidee Ho
Well it has been over a month 1/2 dealing with this and forgetting to share this with you. Like I have a lot of followers but hey....I don't think I want to continue this blog. I say this with a light headed head and with the unwillingness to stop. It doesn't matter how many followers I have It matters what I have to share. It helps me and the few that do follow me.
I have seen my doctor, gone through colds, infections, stomach flu's. Stress in home and my many different relationships. I found some new fibro herb caps at my local health food store called Joint Health. I have also started seeing a chiropractor and he has given me so many types of whole food herbal supplements for my different symptoms like fatigue, heart burn, anxiety, energy and sleep aids. I still take the Savella but my Dr. upped the dosage. I am also taking the Xanax and the Doc changed my Vicodine to Norco. In time I hope to cut back on the last two.. I literally have a box of meds and herbals. I had to buy a new pill organizer to fit all of it....but sometimes I still forget or take part of it and not the other cuz something distracts me and I thought I took it. Then I am wondering later what happened.
Guess what its working. Believe it or not but there is one thing. I developed a new symtoms dizziness, light-headed with a touch of Vertigo. So even though the pain and even the fatigue is better I am still bed ridden at time....OK most times because of this. The Doc thinks its allergies and I am getting inner ear fluid built up. She gave me predisone. Which doesn't really help. I am also having these terrible headache(Migraines) These are new but their frequency has increased.
So all the while life goes on. Kids get sick, house needs my attention, Hubby helps and I'm not appreciating that enough. I also have a calling(job) in my church working with the youth....This as well has become very demanding the computer calendars and flyer's is not my only duties and it seams more is being asked of me....Which I don't mind cuz I truly believe in serving my fellow man. I help myself and my self-esteem and its not not more than usual but I am feeling so very overwhelmed with it....I want to just quit but if I do that I would let my Young Women down....I truly love these girls and want nothing but to be with them but here I am with this feeling of feeling so completely and totally overwhelmed by all the activities I am not even in charge.... So here it comes the inevitable GUILT!!! The "I FEEL WORTHLESS CUZ I CAN'T DO 100%" thing. The " I AM A FAILURE"
Why do I do that. I don't know but I do! This world ask so much of us that we feel so inadequate and for us Fibro Suffers... we are failures. This is a tough world. Most don't believe us and so we are not just failure but lazy, crazy failures. LOL. That Sounds so silly and ridicules because I know I am not but just the fact that someone out there sees me that way makes it all go away and we focus on that one person who thinks the worse of us. I don't think it is not just Fibro suffers but all young girls especially all people who have experience some sort of abuse too. Boy I could go on and on. The question is what do we do about it. Well most just need a pep talk from friends, moms, dads or grandma but for us, Fibro suffers .....I'm sorry...I don't want to offend but we need professional help. I have decided that this is my next step. I need to find someone to help me deal. If you don't think that you need that or it would be a blow to our fight for recognition...I don't feel it would be. I know some of our opposers may say we are just a bunch of depressed people and we need to get over it. What I do know is what ever ignites this for us is not what matter but dealing with constant pain can mess with any ones head. We need to work through it.
I think most already might know this and I have known this but I have been fighting it. This I must give in and get my head straight. Here's to my next step. I pray I am led to the right person for me.
I have seen my doctor, gone through colds, infections, stomach flu's. Stress in home and my many different relationships. I found some new fibro herb caps at my local health food store called Joint Health. I have also started seeing a chiropractor and he has given me so many types of whole food herbal supplements for my different symptoms like fatigue, heart burn, anxiety, energy and sleep aids. I still take the Savella but my Dr. upped the dosage. I am also taking the Xanax and the Doc changed my Vicodine to Norco. In time I hope to cut back on the last two.. I literally have a box of meds and herbals. I had to buy a new pill organizer to fit all of it....but sometimes I still forget or take part of it and not the other cuz something distracts me and I thought I took it. Then I am wondering later what happened.
Guess what its working. Believe it or not but there is one thing. I developed a new symtoms dizziness, light-headed with a touch of Vertigo. So even though the pain and even the fatigue is better I am still bed ridden at time....OK most times because of this. The Doc thinks its allergies and I am getting inner ear fluid built up. She gave me predisone. Which doesn't really help. I am also having these terrible headache(Migraines) These are new but their frequency has increased.
So all the while life goes on. Kids get sick, house needs my attention, Hubby helps and I'm not appreciating that enough. I also have a calling(job) in my church working with the youth....This as well has become very demanding the computer calendars and flyer's is not my only duties and it seams more is being asked of me....Which I don't mind cuz I truly believe in serving my fellow man. I help myself and my self-esteem and its not not more than usual but I am feeling so very overwhelmed with it....I want to just quit but if I do that I would let my Young Women down....I truly love these girls and want nothing but to be with them but here I am with this feeling of feeling so completely and totally overwhelmed by all the activities I am not even in charge.... So here it comes the inevitable GUILT!!! The "I FEEL WORTHLESS CUZ I CAN'T DO 100%" thing. The " I AM A FAILURE"
Why do I do that. I don't know but I do! This world ask so much of us that we feel so inadequate and for us Fibro Suffers... we are failures. This is a tough world. Most don't believe us and so we are not just failure but lazy, crazy failures. LOL. That Sounds so silly and ridicules because I know I am not but just the fact that someone out there sees me that way makes it all go away and we focus on that one person who thinks the worse of us. I don't think it is not just Fibro suffers but all young girls especially all people who have experience some sort of abuse too. Boy I could go on and on. The question is what do we do about it. Well most just need a pep talk from friends, moms, dads or grandma but for us, Fibro suffers .....I'm sorry...I don't want to offend but we need professional help. I have decided that this is my next step. I need to find someone to help me deal. If you don't think that you need that or it would be a blow to our fight for recognition...I don't feel it would be. I know some of our opposers may say we are just a bunch of depressed people and we need to get over it. What I do know is what ever ignites this for us is not what matter but dealing with constant pain can mess with any ones head. We need to work through it.
I think most already might know this and I have known this but I have been fighting it. This I must give in and get my head straight. Here's to my next step. I pray I am led to the right person for me.
Friday, December 31, 2010
I special thought from a fellow sufferer
Your face is burned n my mind... Ur deep voice plays over n my ear... How badly I wished I was n ur arms... With my head resting on ur chest to hear ur heart beat... Holding hands n dancing to music we humm together... Your my Teddybear n no matter if we end up together or not....
I found this to be touching and a wonderful source of comfort. Beverly I hope you don't mind sharing your beautiful thought.
Thursday, December 30, 2010
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