2Hearts Designs

Support This Site

Sunday, July 25, 2010

Be more aware and importance of support groups

WOO HOO - Comments are now working - can't wait to hear from you!!

Hey everyone I hope you have had a good and somewhat pain free weekend. It has been crazy here the last few days - but what's new right? First of all we went to see Scotty on Thursday and had planned to have my Granddaughter, Christina's, cake while we were there. Most of that went fine. However, Darren ended up with a big blood pressure drop and racing heart. Which meant a trip to the hospital in the ambulance no less. I don't even want to see that bill :(  Anyway it turned out OK as it was just his medicine. The Doc at the VA had given him some new meds and told him when to take them. Well he did what they said, but they were wrong. At the hospital they gave him 2 bags of IV fluids and told him NOT to take the 2 meds at the same time any more. It just goes to show you that you always need to check with your Pharmacist when you get new meds to make sure you can take them together and/or at the same time. Then on Friday we had to go to VA for him to have more blood tests. This makes our 3rd trip there this week. It is a 45 minute drive - which is not bad. Except when it's 95 and you have no air conditioning in the truck - then it's BAD. 

Of course Saturday the ugly monster that lives within me had to rear it's ugly head.  Add I was in major pain all day. I know it was just a combination of the heat and stress, but it just loves to sneak up on us doesn't it?

I had a very enlightening experience while I was at the hospital. There was a nurse there who was very sluggish and seemed "out of it". I thought "Geez, oh Pete, can't this woman speed up a little"? Then it was like I slapped myself! What if this woman has Fibro and she can't go any faster? What if she is in so much pain, but has to work anyway, that it takes her forever to move? Oh my it really shook me up for a minute or so. Here I am judging others the same way I curse others for judging me. It's just like when I use the handicap parking and someone walks by and makes a snide remark like "She doesn't look handicapped to me".  How I hate that!! It sure will make me more aware of how I look at others in the future -- although I have always tried.

I did create a new t-shirt design that night that depicts "the monster within". To me our attitude is just as damaging sometimes as our pain. It makes us want to strike out at others because they do not understand. But how can they? If you saw someone with a heart condition -- would you know it? What about first stages of cancer?

As with anything else in our lives we must be aware of our thought and feelings, as much as our pain. Our "monster within" causes us more pain than just physical, but others can't know that unless we share it with them.  So please be kind to yourself and let others around you know when it's a "bad" day. It's VERY IMPORTANT to find a support group in your area and attend those meetings.  If there aren't any listed on the National Fibromyalgia website, check your local paper or call the local information and referral line at your local hospitals. Just like doctors - groups are not always set up the way you would like. Go a couple of times and then make a decision as to whether you want to go back or not. If you can't find a group -- find a few friends who support you and/or also have Fibro and go out for coffee or meet at some one's house (where you can openly cry and bitch if need be) .  From support groups I have ran and attended in the past here are a few things I feel they should include:
(1) Education about all aspects of Fibro and Chronic Fatigue
This can include speakers, handouts, flyers on events, etc - but don't blog a person down with too much information at once. Our foggy brains get confuzzled easy enough with only a few pieces of info. Pick your speakers wisely. I hate to go to groups and hear about a great new treatment only to find out it costs a zillion dollars -- which insurance doesn't pay for.
(2) Support - all groups should have some meetings where there is no speaker so those attending can share their support, strength and hope with others. This is NOT to TELL others what to do. It's to let them know what has and has not worked for you. Decisions about treatment, medications, etc should be left up to the individual. What works for one of us may not work for another. Our "monsters" have different appetites and some won't like what others do. :) Mine is very picky and only likes to eat certain meds for a limited amount of time. Then he doesn't let it work any more, so back to the doc I go to get another kind. :( 
NO MEDICAL ADVICE -- Unless you are a trained professional DON'T DO IT

Well that's about it for today as my vaccum is waiting on me :) I have attached a link (if I did it right) to my Cafe Press store where you can buy my t-shirts, hats, etc. I will be adding more later, but as with this blog it's a learning process.


Sending blessings and a wish for you to have pain free day

1 comment:

fibromite05 said...

Theresa Roberts Bickel sent me this note to share with you.

"Hi Darla, I to Suffer with fibro. I was diagnosed about 7 trs. ago but I had it about 3 yrs. before that and didn't know what it was at the time until i started having tests done and physical therapy done. I was once in a wheel chair but thank God I graduated fom that after having accupuncture for a while. It was 40 dollars everytime I went and I was going 3 times a week and Insurance wouldn't pay for it so I had to quit going but I did get out of the chair. My body aches and I have stabbing pains like someone is taking a knife to me on top of the dull achynes. I can only stand about 10 min. before I start having severe pain. I can't walk hardly at all anymore. I have to take the buggy in the stores thats if I even feel like going. I go to Muncie at Ball Memoril Hospital for Ketamine infusions twice a month that helps relieve the pain for only a little bit but I do get relief while I am there and it feels wonderful not t o have that constant pain. I also have stenosis of the spine and apsine spur by the sciatic nerve and that makes the pain that much worse. I have been under alot of stress because our oldest son was involved in a motor/scooter accident June 25th 2009 and broke his neck in 2 different places and they had to amputte his eft leg from the upper knee down and he is now a quadropalegic we finally got him home on June 25th 2010 one year to the date of his accident. So helping to take care of him and all the paperwork that has to be filled outi is overbearing. WE have a nurse thats here everyday and an aid here 5 hrs. a day which helps me but some stuff only mothers can do. So stress can make t hard on fibro patience. Sometimes I have to walk as if i am 90 yrs. old because I can't stand up straight.AT times Mark has to help me in the tub until we get it handicap acessible. But most of all I feel bad because i am not able to do what Iused to do. I have to take pain meds to take the edge off and anbein to help me sleep at night. I have slept in my recliner for 8 yrs. now because no matter what kind of mattress we bought it didn't help the pain of laying down especially on my hips. I'm sure you go through what I go trough but we wouldn'thave it if God didn't think we could handle it. I just praise him everyday that I didn't lose my son or Mark in June 2009 because Mark had to be rushed to Indiana Heart Hospital June 2nd and had a 5 bypass and I almost lost him to. So I was on the interstate everyday goin from Methodist to the Heart Hospital. Spent 3 to 4 thousand dollars in gas alone and I hurt so bad during this time but I had no choice, I had to do it.So 2009 was a very bad year fr us. We had to get Josh out of the nusing home due to neglect you wouldn't believe in a million years what all hs happened to him in the nursing home. Its just a good thing we got hm out, Thats something I would have to talk to you over the phone about,its to personal. I'm sorry you didn't ge my posts so I thought I had better type you on your post instead this time lol. Well I hope you have a blesed evening and week ahead and Thank you for reading my story... Theresa"