New Ivy Willow

Her first EP, Shatter, is still available to stream free on all your fave streaming services. This is new stuff you can here now ❤

I will try blogging here awhile to see if it avoids so much spam. Bookmark please

I have so many spam comments, even with cotcha or whatever it is, on my other site I thought I would try this one. Its very hard to post and know if its helping anyone if I cant get comments. Sometimes it helps me just to write. More often than not now, its more of something I have been through or realized that helped me and I wanted to share with someone else in hopes of helping them

Today there is so much on my mind that I am unable to focus at all. I understand that if you can not focus, its very hard to succeed at any task as you are simply unable to see it through. That is how I feel about my life now. Its getting very hard

I will give a refresher on what I deal with since its been so long. I was diagnosed with colitis about 1992. I was diagnosed with fibromyalgia soon after or either right before. I was first told I had some sort of techychardia in 1996 and had one of the first ablasions in the US. Later I kept having trouble with my heart, and my last echo showed I might have bicuspid aortic valve but because my colon has always been so bad, they always put this off. They also suspect I have graves disease but the blood test showed yes, then the scan said no. They wanted me to repeat it but I have been unable to. I was then diagnosed with crohns off and on the last 7 years or so. The blood test is not 100% accurate and never had desease in my ilium or small intestine. Finally it was discovered I for sure had crohns when I had to get my colon removed and now have a perm ileostomy as of last year.

There are a few other things wrong but these are the majors of concern right now. I once was a member of many, and ran a few of my own, support groups for chronically ill and depressed persons. I left most of that alone when a girl on myspace said she tried to kill herself and her daughter found her. I didnt speak with her often and I dont even recall who she is. I felt responsible as so many turned to me in their moment of despair and I was so sick and so into my own illness I just couldnt be there for her. I then tried to help Lisa husband get fibromyalgia on the Oprah show with no success. Lisa had committed suicide. http://www.myspace.com/video/lisa1020varillas. I felt I made no difference to anyone and mostly closed myself off from the world, online and off

I started playing a game on facebook because a friend needed my help and started to use it more and more. As more of my old friends joined, family and I made new friends, I began to talk once again. Now I do what I can in hopes I will help anyone at all in their life. Be it in helping to deal with their own illness, a family member thats ill or just life in general and how to cope. I think if I can cope with all that I have going on, still being married almost 25 years and 4 boys, ages 7-20, I might be of some help in any area.

Well we will see how this works out. Until I learn the new layout here (its been 2 or 3 years since I actually blogged here) and fix it all up, feel free to visit some of my favorite sites

My last blog - http://theinvisibleamongus.com/
My youtube - http://www.youtube.com/theinvisibleamongus
Our fibromyalgia letter writing campaign (many letters of those that suffer FMS, family members of those that do or friends of them) http://fibroletters.com/

The Fibromyalgia Balancing Act

This is still one of the best sites for medical info. Check it out and pass it on. If you dont have FMS remember to please educate yourself to make life easier for those that do. A girl actually said she has the embarrassing fibromyalgia disease. Its a shame she feels she has to be embarrassed but that is how society makes it. Lets help make things a little easier for all those that suffer in silence.              MY BLOG: www.TheInvisibleAmongUs.com  "Changes can come from the power of many, but only when the many come together to form that which is invincible. The power of ONE"     Please join if you know someone with fibromyalgia or just care enough to take the time Fibromyalgia Letter Writing Campaign   Facebook: http://www.facebook.com/group.php?gid=116067165100889&ref=mf Email: Fibroletters@gmail.com Twitter: Fibroletters = Fibroletters@gmail.com Mspace: Fibro Letters = http://www.myspace.com/fibroletters     -------Original Message-------       Subject: Fw: The Fibromyalgia Balancing Act   some info might be useful... ----- Original Message ----- From: WebMD   Sent: Tuesday, May 18, 2010 10:28 AM Subject: The Fibromyalgia Balancing Act Tuesday, May 18, 2010 In This Issue:   • Sleeping Pill May Treat Fibromyalgia Pain   • Doctors Just Think I Want Pills ... So Frustrated!   • How Effective Are Epidural Shots for Fibro Pain? The Fibromyalgia Balancing Act People with fibromyalgia are more prone to falls, but balance exercises and aerobics may help keep you on your feet. Also See:   • New Guide to Pain Relief   • Botox for Back Pain?    • Brain Foods That Help You Focus Health News & Features Sleeping Pill May Treat Fibromyalgia Pain A popular -- and powerful -- sleeping pill may banish fibro pain. Could it help you? Also See:   • How Mom Can Help You Heal   • Zap Real Pain in Virtual Reality Doctors Just Think I Want Pills ... So Frustrated! This member is in serious pain, but can't get any help. Doctors think she's a pill addict. Been through this? Also See:   • Ways Doctors Diagnose and Manage Pain   • I'm New to Fibro, Would Love Advice More From WebMD:   • Fibro Fog, More Common Symptoms   • Know Your Health Risks -- Get a Personalized Report   • 11 Symptoms of Depression From the WebMD Fibromyalgia Exchange How Effective Are Epidural Shots for Fibro Pain? This member is researching epidural shots and other injections for fibro pain. What works? What doesn't? Share your experience. Start your own discussion on the WebMD Fibromyalgia Exchange. From Our Sponsors   • Learn About Fibromyalgia Pain Management   • Depression: Treating the Symptoms Newsletter Management Don't miss an issue of this newsletter. Add WebMD to your email's safe sender list -- get instructions here. You are subscribed as    update your email address. To unsubscribe from this Fibromyalgia newsletter, send a blank email to cnx_fibromyalgia@health.webmd.com. To unsubscribe from ALL WebMD newsletters, send a blank email to unsub@health.webmd.com. WebMD Privacy Policy WebMD Office of Privacy 1175 Peachtree Street, Suite 2400, Atlanta, GA 30361 © 2010 WebMD, LLC. All rights reserved. advertisement advertisement WebMD Shortcuts Fibromyalgia Health Center Member Support Group News Center Message Boards, Blogs Home Page

Celiac, Crohn's Disease and Fibromyalgia

Thursday, May 07, 2009 1:23 PM Celiac, Crohn's Disease and Fibromyalgia People with celiac are misdiagnosed as something else up to 97% of the time. Celiac disease is an auto-immune disorder triggered by the proteins in wheat, barley, and rye, and treatment for it is a life-long gluten free diet. I tried a gluton free diet years ago because of an old Chinese man that had his own shop at the persuasion of a friend. It was just too expensive at the time. Now the the book coming out from the chick on the view, many are talking about it now. She also gives great references in her book  to other sites and cookbooks for gluton free diets. The foods are also available in a much bigger variety and wider supply then before. You can even order gluton free at many restraunts when you go out to eat I think its worth looking into if you have any auto immune disease myself. It cant hurt any. You might also try cutting out sugar for awhile. My son suffers migraines and IBS. We took sugar out his diet just 2 weeks and he hasnt suffered as severly since. Those 2 weeks he didn't suffer at all. Sugar also seems to aggravate my chrons/colitis.  ------------------------- The first online resource dedicated solely to providing the latest, most reliable information on celiac disease and gluten-free living. - http://www.celiac.com/ My Google library with links to references and glutton free cookbooks - My Google book library http://www.youtube.com/watch?v=UH6qY-qtLRg Dr. Vickery discusses Celiac and Crohn's diseases and the changing face of Fibromyalgia using the Two Edged Sword Diet and Platinum Essential Amino Acids Plus. More information is available at fibromyalgiacure.com.     and we always will!  --- Live your life in such a way that when your feet hit the floor in the morning, Satan shudders and says, "Oh shit...she's awake!" KEEP UP WITH ME: BLOG = http://blogs.myspace.com/lineblack MSN CHAT = lineblack@live.com TWITTER = http://twitter.com/lineblack

Cheaper to die in the US then to live!

Thursday, May 07, 2009 12:18 PM Cheaper to die in the US then to live! Medicare says that because hubbys job insures more then 100 people his insurance is now primary. His insurance wont pay for anything pre existing until after October 9 of this year. Medicare will not allow me to drop his insurance. Since his is now primary, they only pick up certain deductables based on their guidelines, which so far, is not much They feel that unless my medications are life savings, such as needed for a transplant or something, they wont pay for it. Its cheaper to allow me to risk death or just remove  my colon then spend up to $10,000 a month to save it. They also feel they will not pay for anything experimental or anything that's not SPECIFIC to my illness. You know how like with FMS you might try an antidepressant and for some it helps with the pain. Well they don't feel that way We owe thousands and thousands of dollars right now just from deductables. Even with medicare part D paying my meds, its so many and so many over the counters I still have to get, its easily running us $50-$75 a week. Today another tooth crumbled and I almost choked on it. It was just Terry and I here and I never taught him to call 911. I was taking my meds and the tooth just crumbled. Now my throat is more sore then ever before and there are little pieces of tooth that keep breaking. Medicare wont pay for my teeth to be removed either. I don't qualify for state aid, medicaid or anything else because my hubby works. Yet we cant even afford HBO on cable. We have no credit cards, no car payment and the only "luxury" we actually have is the Internet. Which I consider a must as its the only way I have of getting to the outside world It would be cheaper for me to die and get buried them to try to keep me alive and healthy. I am really getting tired of all this fighting just for what seems to me a basic human right. The US cares more about Oprahs sick dog then they do for me     and we always will!  --- Live your life in such a way that when your feet hit the floor in the morning, Satan shudders and says, "Oh shit...she's awake!" KEEP UP WITH ME: BLOG = http://blogs.myspace.com/lineblack MSN CHAT = lineblack@live.com TWITTER = http://twitter.com/lineblack

Medical update: is the fight over?

Tuesday, April 28, 2009 9:03 AM Medical update: is the fight over? Current mood:  peaceful Category: Blogging I wasn't going to say anything but keep living in my peaceful world of denial but my oldest had me face up to reality. Yup, the oldest, the one from that planet calls TEENS, send me through teenhell daily and has mastered the act of how to be AND TEACH OTHERS the teenazzholeness craft I speak more about my FMS as that is what bothers me more then anything all the time. I also have ulcerative colitis. Which seems it might be chrons or intermittent colitis. When I got my colonoscopy the other day, it confirmed that I also still have gastritis, gerd and esophagitis. Which explains why I lose my voice every 5 minutes and sometimes for days Now, I have been dealing with this for as long as I can remember. I always knew I had mucas stools, dirrhea, pain, blood and other happenings. I was always told as a child nothing was wrong, but I was a hypochondriac. When I turned 19 I met my husband. We decided that that was no life to lead and we would find out what was wrong, fix it and I could live a life like everyone else. So we started going to every doctor we could find. The more doctors we saw, the more illnesses I was diagnosed with. I was not OFFICIALLY diagnosed with the name colitis until I was about 29. Before then they knew something was wrong, they just didn't have a name for it Now I am 43. Each year has just gotten worse and worse. It has really gotten worse after each child. Yet I always seems to bounce back. With this last baby I have just been unable to. I can always find a month or 2 with peace but these last 5 years I have not had 1 hour of peace with my colon So last week you know we had the house inspection (I have a story for that too will do later). We were cleaning and what not but I felt worse then usual. I thought it was because I had been bleeding so bad the last months I was just tired. After almost fainting I decided it was time to try to rest no matter what. That night we went to my sons 5th grade ceremony and I said I was staying in bed 1 entire day the following day. Well I didn't have a chance to When I woke up that morning, it was to the voice of one of my doctors on the phone. She was begging me to come in. I had also did some upper bowel thing a couple of days before and my colon was so enlarged it had people running in every direction. I told them I couldn't stay as I had 4 kids and my hubby had to go work. With these phone calls that day, so many of them and her being so persistent I thought maybe I should listen. They always tell me I am sick but this was different. So I agreed to go in Turns out that my entire colon is pretty much shot to heck. The little part that isnt is already diseased so they want to take out anyway. Even if I get the entire thing removed, because I have intermetent of chrons, the bowel that's left probably will get infected but that should be years down the road. I should be able to manage it with drugs for now. I have been on steroids for so long now, even their highest dosage is barely affective. After 4 days on IV dosage, I manage to have only 1 stool that was not dirrhea and still the blood just will not stop That is where we stood. I just was in disbelief. My GI came in one morning and he was so sad also. He refused to believe it himself and put in 2 calls. One to chief of surgery somewhere, and the other to a friend of his, Dr Elliott He sat in my room on a call and they discussed me for what seemed like almost an house. He told his friend I had 4 kids, I had been fighting this for years and once I had decided to have my lats baby, the others doctors just refused to treat me. (I think I am the only person we all know that has had 4 children with the illnesses I have so its a big thing) My GI is the guy I had prayed about. I truly believe that he was sent to me by God and he is aware that I believe that. He is the greated doctor I have had in years. Even knowing my battle is an up hill one, he still tries, he still fights for me and most of all he knows me. He is my only doctor that knows my name, I am married and have 4 kids WITHOUT LOOKING AT MY CHART. Ok, sorry, got off track. I just so love him! His friend is a genius in his field. So they came up with a treatment for me that he felt would work. My doctor was so excited he was jumping up like a little kid haha. The only thing was one of the meds was experimental and would it be covered under my insurance. So he started me on tests right away and the drugs taht we knew were covered while we waited To make this longer story...less longer haha, it was not approved. Medicare has now made my husbands insurance primary. His insurance will not cover anything pre existing until October 9th of this year. So medicare wont even pay their dedictables or my own. After 2 days of being in the hospital medicare already sent a bill for over $1,000 for my part and would add to that. The drugs I needed were $7,000 - $10,000 per month and medicare or blue cross would pay. I dont qualify for anything else, any state or federal help. I dont qualify for any colitis/chrons studies I have fms also and the symptoms are too similiar. This is where I am right now and the reason for my blogging. My son and hubby says well, now we just have to wait. I am thinking wait for what? We know whats going to happen. In June I will be going in to lose my colon and come up with a colostomy bag. Something else to care for and STILL be sick from the chrons, fms, etc. Then I remember why I had not fallen completely apart Remember I had taken imuran for months before. It was working great but it left me prone to the flu, strep throat and everything else. i was sick for the entire 4 months I was on it from one thing or another. Yet my colon was doing much better. So this is what they released me on. On a smaller dosage with another medication to boost it. So I was STILL on something. If this works, I can stay on it endlessly. If it works even for a short while, I can stay on it until after october when blue cross kicks in, have the surgery and it will be covered. Maybe I can even make it 2 more years and get into one of those programs where they are regrowing organs. The posibilities are endless. The possiblities God has given There is one other hitch though. No one wants to pay for that either. They feel I am a lost cause so why bother. They just want my colon out so they can stop paying for these drugs. So the pharmacist if faxing my doctor again to see if they can now get blue cross to pay for it since its not actually a colitis med. So I am waiting I need prayers. I need prayer that my colon will not rupture before June. I need prayers that I dont have to spend another week in the hospital and risk hubbys job. I need prayers that this medicine works and that maybe I can even find a remission. I need prayer to just remember to have hope. To remember there are still posibilities. To remind me of God Can my road of fighting be finally coming to an end? Nope. One reason is because God gave me people to ahve my back. The other reason is beause there is no end. As long as I wake up another day, with a colon or not, I have won. There is no end for me. I woke up again today. I had coffee today. Today is just the BEGINNING...again. Here is a pic of what the bag will look like and 1 persons way of caring for it http://blogs.healthcare.com/leemega1/2008/06/21/photo-set-2-living-with-ileostomy/ bag = http://ucstory.wordpress.com/files/2008/05/ib-14.jpg stoma = http://ucstory.wordpress.com/files/2008/05/ib-1.jpg BTW, EVERY woman I know that has a bag has lost their relationship. All but one but I lost touch with her years ago. First their hubby cheats, then leaves. Or in one case, they live together for money reasons and just a silent understanding he cheats. That is my other concern. Yet I know if hubby leaves after 25 years its just how its meant to be. Pray for me       and we always will!  --- Live your life in such a way that when your feet hit the floor in the morning, Satan shudders and says, "Oh shit...she's awake!" KEEP UP WITH ME: BLOG = http://blogs.myspace.com/lineblack MSN CHAT = lineblack@live.com TWITTER = http://twitter.com/lineblack

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The inspection is over!

Tuesday, April 21, 2009 2:55 PM The inspection is over! Current mood:  exhausted Category: Blogging The follow up inspection was today about an hour ago. The same man came back with the owner of the house but this time Anthony was home. I was in the bed and refused to come out my room as I was afraid I would curse out the fat, prejudiced inspector. They came in the house, he looked at the light over the washer to see if repaired, came upstairs to check the kids window and to look at the smoke alarm, again. After a lot of "Thank you sir", and "ha ha" and all that crap, the fat bastard left. He didn't say anything at all to Anthony, just as I told him. He didn't even say hi to me or dare step in my room The smoke alarm was the same one from before when he was talking crap to me. We still had laundry being done in various stages over the first floor. All that crap that man talked to me and made me cry, he said nothing to my husband, not one word. Which I said would happen So after a month of nerves, a month of fuming at this stupid man and still being upset the owner let the jerk talk to me like that, its finally over. At least until next year. Thanks for all your prayers and well wishes.   and we always will!  --- Live your life in such a way that when your feet hit the floor in the morning, Satan shudders and says, "Oh shit...she's awake!" KEEP UP WITH ME: BLOG = http://blogs.myspace.com/lineblack MSN CHAT = lineblack@live.com TWITTER = http://twitter.com/lineblack