Guest guest Posted November 6, 2007 Report Share Posted November 6, 2007 Welsome to the group . Chris " B. " wrote: I am usure as to how much I should include when introducing myself to you so if it is too long and boring - sorry - maybe it could be used to aid insomnia! :-) Name: B. Email: david_b_cooper@... Address: Dolton, Devon, UK Birth date: 22 June 1952 How long have you been diagnosed: Diagnosed SLE in 1992 recently told that diagnosis is AOSD What meds do you currently take? Folic Acid; Methotrexate; Prenisolone; Lisinopril; Lansoprazole; Cinnarizine; GT Spray; Dihydrocodeine; Tramadol; Simvastatin; Metformin; Risedronate; Bendroflumethiazide; Diclofenac; Gliclazide & Diltiazem Employment (if any): Semi Retired Former Senior Nursing Officer, NHS. Current Editor-in-Chief, & Francis Journal, Mental Health and Substance Use. Author/Editor/Writer: Communication, Hope and Coping Strategies, Service Development/Management, Alcohol and Substance Use, etc., Awards: NCA UK - Outstanding Contribution to Nursing Award 2003. Sigma Theta Tau International - Honor Society of Nursing - Honorary Member Award, 3rd November 2007 Family Life: Married to Jo, a Clinical Nurse Specialist and Editor in Palliative Care. 2 Adult Children. Phil, A Nurse Educator, Editor Mental Health and Substance Use and MSc Dual Diagnosis. Marc - Senior Scientist RSPCA. Ph.D. Hobbies: limited but do like reading and writing. Thank you for agreeing to my joining you. With kind regards. B. 23 Orchard Gate Dolton Winkeleigh Devon EX19 8QZ T: 01805 804445 E: david_b_cooper@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2007 Report Share Posted November 6, 2007 welcome Dave and I must say you gave more info then I ever did . welcome and glad you found us but sorry you were looking at the same time the redneck Marty Calling an illegal alien an " undocumented immigrant " is like calling a drug dealer an " unlicensed pharmacist. " " Those who hammer their guns into plows will plow for those who do not. " ~ Jefferson Stills ; An illness I know to well! To learn about Stills http://www.stillsdisease.org/stills_info To donate http://www.stillsdisease.org/donations __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2007 Report Share Posted November 6, 2007 welcome Dave and I must say you gave more info then I ever did . welcome and glad you found us but sorry you were looking at the same time the redneck Marty Calling an illegal alien an " undocumented immigrant " is like calling a drug dealer an " unlicensed pharmacist. " " Those who hammer their guns into plows will plow for those who do not. " ~ Jefferson Stills ; An illness I know to well! To learn about Stills http://www.stillsdisease.org/stills_info To donate http://www.stillsdisease.org/donations __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2007 Report Share Posted November 6, 2007 welcome Dave and I must say you gave more info then I ever did . welcome and glad you found us but sorry you were looking at the same time the redneck Marty Calling an illegal alien an " undocumented immigrant " is like calling a drug dealer an " unlicensed pharmacist. " " Those who hammer their guns into plows will plow for those who do not. " ~ Jefferson Stills ; An illness I know to well! To learn about Stills http://www.stillsdisease.org/stills_info To donate http://www.stillsdisease.org/donations __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2007 Report Share Posted December 21, 2007 ((((((((((((( Janine ))))))))))))) God Bless you and your hubby for taking in these two precious little ones...the world is a better place because of people like you. I am so glad you are here , we are all in this together !!! hugs and prayers Wags! Wags! Wags! Lowry "There is no psychiatrist in the world like a puppy licking your face." Author Ben Autism and Aspergers Treatment From: PrincessJ9r@...Date: Mon, 17 Dec 2007 15:17:21 +0000Subject: Introduction Hello. My name is Janine and I am the mom of 2 children. Let me give you some background on the kids. Both children were born from my cousin who lost parental rights. My husband and I took in our oldest when she was 5 years old. She is now 10. She at that time did not have any sort of diagnosis. My aunt had taken her in when she was 15 mos old. My aunt was a single mother with 4 kids of her own. When she got Krystal, Krystal was like a wild animal. My aunt did all she could but Krystal could not be controlled. She had gotten out of the house on multiple occasions in the middle of the night and brought back by the police. Krystal would stack things to get to the lock on the top of the door or anything else for that matter. My aunt could not take it anymore because she was missing to much work. She was going to put krystal in a group home. My husband and I were not going to let that happen so we took guardianship of her. Right away I took her to specialist after specialist and finally was given the diagnosis of PDD-NOS. She also was diagnosed with ADHD and a sleep disorder. We have her on medication for ADHD because otherwise she is uncontrollable and on medication to sleep otherwise she wouldn't sleep and neither would we for that matter. She gets into things you wouldn't believe. Nothing is childproof for her. We have locks on all our medicine cabinets as she loves medicine. Even so, we have our issues with this child. Not to say we love her any less. We love this child with all we have. Now on to our second child, also born from the same mother. We had to become foster parents in order to get him. My cousin was pregnant with him when her other 2 kids were taken from her. My other aunt & unlce did the foster parent classes to get the other 2 kids. My husband and I discussed taking the baby before he was born knowing that there was a 90% chance he would be born with probelms as my cousin was doing drugs while pregnant with him. In the end we decided we wanted him no matter what. We got Brenden at 10 days old. We actually got him right before we got married. After we got back from our honeymoon, Brenden started going through drug withdraw. Crack cocaine to be exact. He was put on Phenobarbitol and then 6 months later weaned off because the doctors wanted to make sure it was indeed drug withdraw. My cousin wouldn't sign papers for pre-natal records or her medical records to be reviewed. They weaned him off the pheno and he did not have another seizure episode until long after we adopted him. He is 4 now and has grand mal and petit mal seizures with 2 kinds of seizure meds to control them. In the midst of our foster parenting, Brenden was taken from our family and placed in another home where he received 2nd degree burns to his mouth, lips and throat. This delayed him in quite a few things. When Brenden was burned, we were called to the agency and told that we would be taking Brenden home permanently right after we took him to the hospital. Brenden is now 4, just started walking, doesn't feed himself with utensils yet, doesn't talk and is quite delayed. He is in one of the best theraputic shcools. He hasn't been given a diagnosis yet but I think that the word "Autistic" isn't far away.So, why am I here you might ask? There are days when I feel like pulling my hair out of my head and just need someone out there who can relate to what I may be going through and maybe give some advice. Then there are really good days where I might be able to give a funny "Krystal" story or give a boost to someone else. Thanks for listening,Janine Books, DVD's, gadgets, music and more. Shop online with Sympatico / MSN Shopping today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 For natural vitamin E, take GAMMA E and follow the protocol below. phine. http://www.thecureforheartdisease.com/protocol.htm > > Within 24 hours the symptoms decreased 95% so the offending agent was indeed the lipitor. My question is --where do we go from here? > > Fern > > > > --------------------------------- > Never miss a thing. Make your homepage. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 For natural vitamin E, take GAMMA E and follow the protocol below. phine. http://www.thecureforheartdisease.com/protocol.htm > > Within 24 hours the symptoms decreased 95% so the offending agent was indeed the lipitor. My question is --where do we go from here? > > Fern > > > > --------------------------------- > Never miss a thing. Make your homepage. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 Fern, well first congrats on figuring out it was lipitor. It almost doesnt matter where you go from here except stay off the toxic statins. And celebrate because now his heart and other cells will get more coenzymeq10, which is what is depleted on statins and why they have that scary warning to call you doc RIGHT AWAY if you have muscle pains (which he didnt I know) Its what every cell in your body uses to create energy. I am no stent wiz, so dont know what goes with those, but you shouldnt lose sleep about him being off statins as he had at most about a 2 percent of them helping him avoid a heart attack. Exercise, two drinks a day if he cares to (just read another study that exercise plus moderate alcohol keeps people in better heart shape than just exercise) plenty of antioxidants, omega 3 oil and you will far outperform any statin in terms of keeping his heart healthy. Not to mention nuts, garlic, ask them at the health food store what else. To see those symptoms disappear like that is truly amazing. To the group - are rashes a side effect of the statins? What we are learning from this group is that you must really be sure of the benefit of any drug and weigh it against side effects. The doctors are getting better, but they are trained that drugs and surgery = practicing medicine. KipFern Shap <fernshap@...> wrote: I'd like to introduce myself and learn from this forum. A few weeks ago my husband had a cardiac catheterization and two stents placed. (He had known he had high cholesterol and had tried statins in the past and discontinued because he didn't like how he felt.) He was placed on plavix and lipitor.A couple of weeks into the therapy he suddenly developed rash on his scalp, elbow and hands. The hands were swollen to the point he could not really use them. He saw a dermatologist who prescribed steroids for short term use. This was obviously a pretty severe allergic reaction.A few days later he consulted his internist who felt that lipitor might be the cause, which was a great relief to him because he needs plavix to prevent clotting in the stents. He advised him to discontinue the lipitor.Within 24 hours the symptoms decreased 95% so the offending agent was indeed the lipitor. My question is --where do we go from here?Fern Never miss a thing. Make your homepage. Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 Had a nasty rash on both hands while taking Vytorin. One of the many reasons I stopped. It would create new bumps about an hour after taking and they would bust and ooze throughout the day, calming as it was time to take the next pill. It looked like somebody shot my hands with buckshot. Barb Kip Cleaver wrote: > Fern, well first congrats on figuring out it was lipitor. It almost > doesnt matter where you go from here except stay off the toxic > statins. And celebrate because now his heart and other cells will get > more coenzymeq10, which is what is depleted on statins and why they > have that scary warning to call you doc RIGHT AWAY if you have muscle > pains (which he didnt I know) Its what every cell in your body uses > to create energy. > > I am no stent wiz, so dont know what goes with those, but you > shouldnt lose sleep about him being off statins as he had at most > about a 2 percent of them helping him avoid a heart attack. Exercise, > two drinks a day if he cares to (just read another study that exercise > plus moderate alcohol keeps people in better heart shape than just > exercise) plenty of antioxidants, omega 3 oil and you will far > outperform any statin in terms of keeping his heart healthy. Not to > mention nuts, garlic, ask them at the health food store what else. > > To see those symptoms disappear like that is truly amazing. To the > group - are rashes a side effect of the statins? > > What we are learning from this group is that you must really be sure > of the benefit of any drug and weigh it against side effects. The > doctors are getting better, but they are trained that drugs and > surgery = practicing medicine. > > Kip > */Fern Shap <fernshap@...>/* wrote: > > I'd like to introduce myself and learn from this forum. A few > weeks ago my husband had a cardiac catheterization and two stents > placed. (He had known he had high cholesterol and had tried > statins in the past and discontinued because he didn't like how he > felt.) He was placed on plavix and lipitor. > > A couple of weeks into the therapy he suddenly developed rash on > his scalp, elbow and hands. The hands were swollen to the point > he could not really use them. He saw a dermatologist who > prescribed steroids for short term use. This was obviously a > pretty severe allergic reaction. > > A few days later he consulted his internist who felt that lipitor > might be the cause, which was a great relief to him because he > needs plavix to prevent clotting in the stents. He advised him to > discontinue the lipitor. > > Within 24 hours the symptoms decreased 95% so the offending agent > was indeed the lipitor. My question is --where do we go from here? > > Fern > > ------------------------------------------------------------------------ > Never miss a thing. Make your homepage. > <http://us.rd./evt=51438/*http://www./r/hs> > > > ------------------------------------------------------------------------ > Looking for last minute shopping deals? Find them fast with > Search. > <http://us.rd./evt=51734/*http://tools.search./newsearch/categ\ ory.php?category=shopping> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 Fern, I have had 4 stents and was once on Plavix. I've learned that aspirin is almost identically effective to Plavix in preventing cardiovascular events at a much lower cost. Fish oil is more effective that either of the above. I don't take Plavix anymore and take aspirin and fish oil as part of my supplements/drugs regiment. Steve Fern Shap wrote: > > > I'd like to introduce myself and learn from this forum. A few weeks ago > my husband had a cardiac catheterization and two stents placed. (He had > known he had high cholesterol and had tried statins in the past and > discontinued because he didn't like how he felt.) He was placed on > plavix and lipitor. > > A couple of weeks into the therapy he suddenly developed rash on his > scalp, elbow and hands. The hands were swollen to the point he could > not really use them. He saw a dermatologist who prescribed steroids for > short term use. This was obviously a pretty severe allergic reaction. > > A few days later he consulted his internist who felt that lipitor might > be the cause, which was a great relief to him because he needs plavix to > prevent clotting in the stents. He advised him to discontinue the lipitor. > > Within 24 hours the symptoms decreased 95% so the offending agent was > indeed the lipitor. My question is --where do we go from here? > > Fern > > ------------------------------------------------------------------------ > Never miss a thing. Make your homepage. > <http://us.rd./evt=51438/*http://www./r/hs> > -- Steve - dudescholar4@... Take World's Smallest Political Quiz at http://www.theadvocates.org/quiz.html " If a thousand old beliefs were ruined on our march to truth we must still march on. " --Stopford Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 fern, I take nattokinase as a blood thinner not asprin as to many side effects ,the best part of asprin is the magnesium coating on the outside ,magnesiam you need as well 300mg,400 mg Q10,plus turmic 300mg ,for costerial I take niacin ,alpha lipoic acid,an policosanol ,also to keep any plaque building up I take two tablespoons apple cider vinegar ,morning an evening ,I also add a quarter teaspoon of cayenne pepper with it as it is great for the heart ,i also take hawthorn berry for the heart as well,along with a good multi vitamin ,have a look at the webb site earthclinic .com ,that is a good starting piont , regards mervyn --- In Lipitor , Fern Shap <fernshap@...> wrote: > > I'd like to introduce myself and learn from this forum. A few weeks ago my husband had a cardiac catheterization and two stents placed. (He had known he had high cholesterol and had tried statins in the past and discontinued because he didn't like how he felt.) He was placed on plavix and lipitor. > > A couple of weeks into the therapy he suddenly developed rash on his scalp, elbow and hands. The hands were swollen to the point he could not really use them. He saw a dermatologist who prescribed steroids for short term use. This was obviously a pretty severe allergic reaction. > > A few days later he consulted his internist who felt that lipitor might be the cause, which was a great relief to him because he needs plavix to prevent clotting in the stents. He advised him to discontinue the lipitor. > > Within 24 hours the symptoms decreased 95% so the offending agent was indeed the lipitor. My question is --where do we go from here? > > Fern > > > > --------------------------------- > Never miss a thing. Make your homepage. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2008 Report Share Posted February 2, 2008 <i>To see those symptoms disappear like that is truly amazing. To the group - are rashes a side effect of the statins?</i> The rash and severe swelling of the hands and rashes on scalp and elbow were not " side effects " this was a true, very serious allergic reaction. He did have the side effect of feelings of fatigue and generally feeling lousy. He had tried statins in the past with the same side effects but no allergic reaction. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 My name is and I live in Central New York (which is upstate - definitely NOT Manhattan!). I guess "upstate" depends on your perspective. I'm originally from Ticonderoga. "Upstate"--to someone from Manhattan--is Westchester, and anything north of that simply doesn't exist. I'm now in Tucson, AZ. J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 My name is and I live in Central New York (which is upstate - definitely NOT Manhattan!). I guess "upstate" depends on your perspective. I'm originally from Ticonderoga. "Upstate"--to someone from Manhattan--is Westchester, and anything north of that simply doesn't exist. I'm now in Tucson, AZ. J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 My name is and I live in Central New York (which is upstate - definitely NOT Manhattan!). I guess "upstate" depends on your perspective. I'm originally from Ticonderoga. "Upstate"--to someone from Manhattan--is Westchester, and anything north of that simply doesn't exist. I'm now in Tucson, AZ. J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Jessie, Regardless of what you have - a mutated stills or whatever, you are welcome. Chronic illness is hard and everyone needs support. I am on Kineret also, along with MTX, Pred, muscle relaxers, and about 14 other meds. I hate them all. Before I was dx'd with stills my doc jokingly said I had Rupus... (Lupus and RA). Finally the picture becaming clearer with I began to have high spiking fevers and rashes. I still have spiking fevers some nights, but most days I just get temps up to 100 or 101 depending on how much I did that day. It's hard, but knowing this support group exist and that there are people that care and understand really makes a difference for me. Welcome back. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Jessie, Regardless of what you have - a mutated stills or whatever, you are welcome. Chronic illness is hard and everyone needs support. I am on Kineret also, along with MTX, Pred, muscle relaxers, and about 14 other meds. I hate them all. Before I was dx'd with stills my doc jokingly said I had Rupus... (Lupus and RA). Finally the picture becaming clearer with I began to have high spiking fevers and rashes. I still have spiking fevers some nights, but most days I just get temps up to 100 or 101 depending on how much I did that day. It's hard, but knowing this support group exist and that there are people that care and understand really makes a difference for me. Welcome back. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Jessie, Regardless of what you have - a mutated stills or whatever, you are welcome. Chronic illness is hard and everyone needs support. I am on Kineret also, along with MTX, Pred, muscle relaxers, and about 14 other meds. I hate them all. Before I was dx'd with stills my doc jokingly said I had Rupus... (Lupus and RA). Finally the picture becaming clearer with I began to have high spiking fevers and rashes. I still have spiking fevers some nights, but most days I just get temps up to 100 or 101 depending on how much I did that day. It's hard, but knowing this support group exist and that there are people that care and understand really makes a difference for me. Welcome back. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Thank you so much. I have been on most of those in the past too and I also hate them all. I worked hard to get down to just the Kineret but I still hate it. jessie > Jessie, > Regardless of what you have - a mutated stills or whatever, you are > welcome. > Chronic illness is hard and everyone needs support. I am on Kineret also, > along with MTX, Pred, muscle relaxers, and about 14 other meds. I hate > them > all. Before I was dx'd with stills my doc jokingly said I had Rupus... > (Lupus and RA). Finally the picture becaming clearer with I began to have > high spiking fevers and rashes. I still have spiking fevers some nights, > but most days I just get temps up to 100 or 101 depending on how much I > did > that day. It's hard, but knowing this support group exist and that there > are people that care and understand really makes a difference for me. > > Welcome back. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Thank you so much. I have been on most of those in the past too and I also hate them all. I worked hard to get down to just the Kineret but I still hate it. jessie > Jessie, > Regardless of what you have - a mutated stills or whatever, you are > welcome. > Chronic illness is hard and everyone needs support. I am on Kineret also, > along with MTX, Pred, muscle relaxers, and about 14 other meds. I hate > them > all. Before I was dx'd with stills my doc jokingly said I had Rupus... > (Lupus and RA). Finally the picture becaming clearer with I began to have > high spiking fevers and rashes. I still have spiking fevers some nights, > but most days I just get temps up to 100 or 101 depending on how much I > did > that day. It's hard, but knowing this support group exist and that there > are people that care and understand really makes a difference for me. > > Welcome back. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Jessie Wisniowski wrote: Jessi, Hi, I am 22 years old, and since you are around my same age I was just wondering if you had a hard time dealing with this disease? I thought I was strong and could just go on with my life. But lately it's a lot easier said then done. I get so angry that I am sick and I know there are people who are sicker or in worse pain. I am just afraid that I don't know maybe I will be alone forever because I have a cronic disease. So I guess I was just wondering if you ever have those feelings or did? Thank you for your help. I hope you have a great day Mandy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Jessie Wisniowski wrote: Jessi, Hi, I am 22 years old, and since you are around my same age I was just wondering if you had a hard time dealing with this disease? I thought I was strong and could just go on with my life. But lately it's a lot easier said then done. I get so angry that I am sick and I know there are people who are sicker or in worse pain. I am just afraid that I don't know maybe I will be alone forever because I have a cronic disease. So I guess I was just wondering if you ever have those feelings or did? Thank you for your help. I hope you have a great day Mandy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Jessie Wisniowski wrote: Jessi, Hi, I am 22 years old, and since you are around my same age I was just wondering if you had a hard time dealing with this disease? I thought I was strong and could just go on with my life. But lately it's a lot easier said then done. I get so angry that I am sick and I know there are people who are sicker or in worse pain. I am just afraid that I don't know maybe I will be alone forever because I have a cronic disease. So I guess I was just wondering if you ever have those feelings or did? Thank you for your help. I hope you have a great day Mandy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Mandy, Hell yeah I was upset about having this disease. I lost all my hair at 23. Steroids made me look like a troll. I didn't understand how my boyfriend could stand by me, but he did. I was afraid I would end up alone but he just proposed to me. I lost a lot of friends when I first got sick. I couldn't go out and party. I can barely stay up past 9. But, i did have some great friends that understood my limitations and were there with me even when I couldn't walk. Its ok to be mad that you are sick and that your life is different from a normal 22 year old. Yes, there are people that have been through worse than Stills, but you also need to allow yourself to have whatever feelings you have about our disease. Life has gotten better for me. I am determined to be as normal as possible. My hair has grown back. It's still short, but I don't have to wear a wig anymore. I can walk now too. What helped me the most was trying to maintain activities that were normal. Even when I looked like a troll and was much worse off I would try and get out like once a week to a movie or a restaurant. I also tried to understand where my friends were coming from. We have things we need to worry about that they don't. I could never just hope in the car and go on a road trip even for a day. When I'm doing any activity I have to plan for how tired it could make me. Don't ever feel pressure to get on with your life on a certain schedule. It will take me 6 and 1/2 years to finish my undergrad degree because of this disease. Take you time. Take up healthy activities too. Like I took up yoga when I was healthy enough. It was a great community of people that were really understand on my disease. Plus anytime you want to chat I'm here. I've had it all. Plus, I have scars from the disease from my neck to my knee caps, but I've learned how to dress so no one would ever know. In fact I got hit on the other day, and i was all like I'm a troll. This disease can destroy your self esteem if you let it. Know that just getting up in the morning and getting through your day proves your strong. Good luck too you. Sorry if I rambled. Jessie P.S. my AIM is AbsolutKDG if you want to talk that way On Fri, Mar 28, 2008 at 3:42 PM, Mandy wrote: > > > Jessie Wisniowski <jessie.wisniowski@...<jessie.wisniowski%40gmail.com>> > wrote: > Jessi, > Hi, I am 22 years old, and since you are around my same age I was just > wondering if you had a hard time dealing with this disease? I thought I was > strong and could just go on with my life. But lately it's a lot easier said > then done. I get so angry that I am sick and I know there are people who are > sicker or in worse pain. I am just afraid that I don't know maybe I will be > alone forever because I have a cronic disease. So I guess I was just > wondering if you ever have those feelings or did? Thank you for your help. I > hope you have a great day > Mandy > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Mandy, Hell yeah I was upset about having this disease. I lost all my hair at 23. Steroids made me look like a troll. I didn't understand how my boyfriend could stand by me, but he did. I was afraid I would end up alone but he just proposed to me. I lost a lot of friends when I first got sick. I couldn't go out and party. I can barely stay up past 9. But, i did have some great friends that understood my limitations and were there with me even when I couldn't walk. Its ok to be mad that you are sick and that your life is different from a normal 22 year old. Yes, there are people that have been through worse than Stills, but you also need to allow yourself to have whatever feelings you have about our disease. Life has gotten better for me. I am determined to be as normal as possible. My hair has grown back. It's still short, but I don't have to wear a wig anymore. I can walk now too. What helped me the most was trying to maintain activities that were normal. Even when I looked like a troll and was much worse off I would try and get out like once a week to a movie or a restaurant. I also tried to understand where my friends were coming from. We have things we need to worry about that they don't. I could never just hope in the car and go on a road trip even for a day. When I'm doing any activity I have to plan for how tired it could make me. Don't ever feel pressure to get on with your life on a certain schedule. It will take me 6 and 1/2 years to finish my undergrad degree because of this disease. Take you time. Take up healthy activities too. Like I took up yoga when I was healthy enough. It was a great community of people that were really understand on my disease. Plus anytime you want to chat I'm here. I've had it all. Plus, I have scars from the disease from my neck to my knee caps, but I've learned how to dress so no one would ever know. In fact I got hit on the other day, and i was all like I'm a troll. This disease can destroy your self esteem if you let it. Know that just getting up in the morning and getting through your day proves your strong. Good luck too you. Sorry if I rambled. Jessie P.S. my AIM is AbsolutKDG if you want to talk that way On Fri, Mar 28, 2008 at 3:42 PM, Mandy wrote: > > > Jessie Wisniowski <jessie.wisniowski@...<jessie.wisniowski%40gmail.com>> > wrote: > Jessi, > Hi, I am 22 years old, and since you are around my same age I was just > wondering if you had a hard time dealing with this disease? I thought I was > strong and could just go on with my life. But lately it's a lot easier said > then done. I get so angry that I am sick and I know there are people who are > sicker or in worse pain. I am just afraid that I don't know maybe I will be > alone forever because I have a cronic disease. So I guess I was just > wondering if you ever have those feelings or did? Thank you for your help. I > hope you have a great day > Mandy > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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