'~Losing Face, I Have Scleroderma~'
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| Name: | William |
| E-mail address: | william@juno.com |
| Homepage URL: | http://homepages.pathfinder.gr/amieva/tadalafil/tadalafil-side-effects.html |
| Comments: | Greetings from Denmark. You have a lovely website, Visit <a rel="dofollow" href="http://salud.dzaba.com/fastin/fastin-order.html" title="fastin order">fastin order</a> ... <a rel="dofollow" href="http://tartre.20m.com/zithromax/zithromax-dose.html" title="zithromax dose">zithromax dose</a> ... and have fun! I'd like to wish you all the best for the future. |
| Name: | Susie |
| E-mail address: | gs.harry@hotmail.com |
| Comments: | I have been ill for a few of years now, about 9 months ago I was told I have limited scleroderma, fibromyalia, chronic fatigue syndrome, raynauds. I grow more tired as time goes on and the pain seems to increase. I cry a lot because I feel so alone. I have a wonderful husband, and great kids but still feel alone. I feel sometimes like the doctors have no idea. I am 42 years old. My life has changed dramatically I can no longer enjoy the things that I did before. But I am still grateful always for my husband and children and most of all for Jesus. Even if I feel alone they never leave me. I pray for Gods help for all suffering with this disease. |
| Name: | HONEY D.HERRICK |
| E-mail address: | TIGERGIRL19@ATT.NET |
| Comments: | I WAS DIGNOISED 13 YEARS AGO.IAM STILL LOOKING FOR A DOCTOR THAT I CAN TRUST.BECAUSE FOR THE FIRST 3 TO4 YEARS I THINK THE DOCTORS WERE TRYING TO KILL ME OFF.THE DOCTOR THAT I GOT KNOW.I DON'T TRUST BUT I HAFT TO GO TO HIM BECAUSE OF SOCIAL SECURTY,RIGHT NOW I TAKE ENALAPRIL 20MG FOR MY BLOODPRESSURE TO HEAL MY ULCER I USE NEOSPORIN WITH PAIN RELIEVER IN IT.I FEEL A DOCTOR CANNOT TELL YOU WHEN YOU ARE GOING TO DIE.AND THE DRUGS THEY TRY TO PUT YOU ON THE DOCTOR IF HE DON'T GOT IT THEN HE DON'T KNOW WHAT I AM GOING THROUGH.THEY PUT ME ON PROCARIDA XL 60MG AND I WAS DOWN TO 84 POUNDS BEFORE I WENT TO ANOTHER DOCTOR,I STARTED OUT AT 130 POUNDS.I KEEP TELLING HIM THAT I DID'NT LIKE THE WAY IT MADE ME FEEL,HE SAID THAT I WOULD HAFT TO TAKE IT THE REST OF MY LIFE.WELL THAT WAS 10 YEARS AGO.SO PLEASE IF YOU COULD HELP ME FIND A DOCTOR,THAT I CAN TRUST AND DON'T JUST WANT TO PUT ME ON DRUGS.I AM DOING OK BUT THAT BECAUSE I TRY TO STAY AWAY FROM DOCTOR.THE HARDEST PART IS ITS ATTACHING MY FACE,AND MY FAMILY AND FRIENDS THEY LOOK AT ME WITH SAD FACES AND THEY DON'T KNOW HOW TO HELP ME.I KNOW THAT GODS WITH ME IS THE ONLY ONE THAT CAN TELL YOU WHEN WE WILL DIE.I READ ALOT ABOUT IT AND I GO BY MY SYMPTOM AND I JUST NOW GOT A COMPUTER.AND NOW I DON'T FEEL SO ALONE.I'VE ALSO HAVE HAD TWO DEATHS,MY OLDSET SISTER AND MY YOUNGEST SISTER.THEY DIED OF ANEURYSM.MY OLDEST DIE AT 36 THEN TEN YEARS LATER MY YOUNGEST SHE WAS 36.IHAVING SUCH A HARD TIME.MY MOM HAS HAD TOO STROKES,WELL 3 AND RIGHT KNOW I AM TAKING CARE OF HER THE BEST THAT I CAN.I LIVE IN TOPEKA KS.I HAVE BEEN HAVING PROBLEMS WITH BOILS.STAPHYLOCOCCUS.I KNOW OF A FRIEND THAT DIED FROM IT.I DO HAVE A HIGH TOLERANCE FOR PAIN.I'VE BEEN KEEPING MY WEIGHT AT 95 TO 100 POUNDS.HITAL HERNIA ANDHAD MY ESOPHAGUS STRETCHED AND GASTRO- REFLUX.THIS IS ALL VERY HARD TO DEAL WITH,ONE DAY AT A TIME.I'AM PRAYING FOR EVERYONE .GOD BLESS. |
| Name: | Debra |
| E-mail address: | bj073191@yahoo.com |
| Comments: | I pray for any one who have to face any medical obstacles; It is a test whether it be me or you. I am a healthcare worker and I see it all.
My prayers are always with you for remission. |
| Name: | Chanta Dames |
| E-mail address: | pbreyes04@yahoo.com |
| Comments: | I think you are still very beautiful! |
| Name: | Irma Duffy |
| E-mail address: | ihm514@hotmail.com |
| Name: | Diane Cox |
| E-mail address: | bardine7@cox..et |
| Comments: | I also have scleroderma butI hope the dr's I have are actually really helping me. I wish you the best and
Keep the faith. |
| Name: | Claudia Hilburn |
| E-mail address: | CHilburn@SC.rr.com |
| Comments: | Thanks for your story!
I just began chemotherapy (cytoxin-IV) 2 weeks ago. I'm praying that it works. Good luck to you. |
| Name: | HONEY DEAN HERRICK |
| E-mail address: | hdhoney101962@att.net |
| Comments: | HI!MY NAME IS HONEY AND I WAS DIGNOISED WITH SCLERODERMA 14 YEARS AGO AND I STILL HAVE'NT FOUND A DOCTOR THAT I LIKE OR TRUST. I LIVE IN TOPEKA KS.THERE ARE NO SUPORT GROUPS OR DOCTORS THAT KNOW ANYTHING ABOUT IT.ITS IN MY FACE, PLEASE IF YOU HAVE ANY HELP PLEASE LET ME KNOW.NEOSPORN WITH PAIN RELIEVER IN IT DOES THE BEST JOB I AM 44 YEARS OLD. AND MY BODY FEELS 80 SOMETIMES I FEEL SO SCARE OTHER TIMES SAD AND TO SEE WHAT ITS DOING TO MY FAMILY.THEY DON'T KNOW WHAT TO DO OR SAY .ALL I COULD SAY WAS EVERYONE GOT A NUMBER AND WHEN THE GOOD LORD SAID ITS UP .NOT NO DOCTOR SIGNED HONEY HERRICK |
| Name: | Jane Cooke |
| E-mail address: | janec34@aol.com |
| Comments: | Hi April
thank you so much for your inspriation. i have had RP for 14 yrs and just 2 yrs ago was diagnosed with systemic scleroderma, i am now getting more and more symptoms and am frequently taken into hospital. There are days that I feel very angry and ask why me, other days i feel i can't go on coping with so much pain and other days i have good thoughts. When i have a bad day i feel that know one understands my pain and tiredness its nice to know that there are others out there that can understand what we go through. Good luck and God Bless xxx |
| Name: | Mariette |
| E-mail address: | mariette_68@hotmail.com |
| Comments: | Hello My name is mariette I am 48 years old and I broke in tears when I started reading the begining of your story, I feel now that I am not alone, I want you to know that I have so many of your simptoms, and it is a realief to know, that somebody can understand how hard it is feeling every single palpitation, I do have the same situation with my valve, and also I have those simptoms of extreme fatigue and shortness of breath, I have had several cardiologists I do not think they have help me very much, and I have been under a lot of stress in the last few years and that made my condition worse, at this point I am about to get a new cardiologist, I hope I do get help this time,but you know so many of the other things you had I can relate to,your story helped me so much, so thank you so much for your beutiful website, I admire your spirit, I wish you the best, God bless you, Mariette |
| Name: | Linda Peterson |
| E-mail address: | flpeterson@gmail.com |
| Comments: | thank you. i was diagnosed with scleroderma a year ago. i have been so scared. please keep posting. best of luck and god bless |
| Name: | Angela Pennington |
| E-mail address: | flyingeddieteddie@yahoo.com |
| Comments: | I just read your story and looked at your pictures. Very inspirational that you have such a good sense of humor. My sister-in-law has diffuse systemic scleroderma. Good luck in your fight. |
| Name: | Esther |
| E-mail address: | mchokozi@sbcglobal.com |
| Comments: | Thank you so much April! Please let us know how you are! I work with Pulm HTN patients and I am also part Natiave American with some auto-immune issues myself. I have such admiration for you. Please update us as to how you are. Thinking of you and your family and wishing you the very best---
Esther |
| Name: | Cathy McRae Orlowski |
| E-mail address: | catorco@ev1.net |
| Comments: | April, As your older sister I have always taken up for you from the cruel remarks and ugly looks that people have given you in the past, especially when we are together. I will always do that for you. All those years of wearing braces and never seeing anything change, the pain you went through... I was there. I will ALWAYS be there for you. I DO NOT see you as some ugly monster with bad teeth I just see you as MY SISTER. The same smart ass little brat who kept wearing my clothes and followed me around. I love you!
Love always Cathy |
| Name: | Cathy McRae Orlowski |
| E-mail address: | catorco@ev1.net |
| Comments: | April, As your older sister I have always taken up for you from the cruel remarks and ugly looks that people have given you in the past, especially when we are together. I will always do that for you. All those years of wearing braces and never seeing anything change, the pain you went through... I was there. I DO NOT see you as some ugly monster with bad teeth I just see you as MY SISTER. The same smart ass little brat who kept wearing my clothes and followed me around. I love you!
Love always Cathy |
| Name: | rosemary richard |
| E-mail address: | roseyat505@aol.com |
| Comments: | hi my name is rosemary, nice to meet you, i got on my computer to check messages. tomorrow i have a colonastomy so tahts what i put to search links. guess what your link was the only one there i clicked. i read the whole intro. i related alot my best friend has lupus well thats what you call it. abnyways i felt like cryin while i read it. ididn't realize how serious it is. i was in denial with my best friens illness. i just wanted to let you know that i will do more research on it thank you |
| Name: | Allen |
| E-mail address: | allen@yahoo.com |
| Homepage URL: | http://amedat.web.fc2.com/zoloft/ |
| Comments: | Great site, lotsa funny links and stuff. I enjoyed my stay and will come back again. You can visit my site http://amedat.web.fc2.com/zoloft/ too. |
| Name: | Terrina Danielle |
| E-mail address: | terrina_danielle@juno.com |
| Homepage URL: | http://alemed.t35.com/risperdal/ |
| Comments: | Wow! Well done! If this was, like, an assessment or something, i'd sure give you guys full marks!! http://alemed.t35.com/risperdal/ master. |
| Name: | Janet Strychalski |
| E-mail address: | its_just_a_game2002@yahoo.comBellsouth |
| Homepage URL: | http://Bellsouth |
| Comments: | I must say, after reading "Losing Face.....I was a little beside myself with anxiety. I, too, have Scleroderma, and as you have indicated...it can be a very dibilitating disease (so-to-speak). I have good days and bad ones. also. but after reading your words... I realize we both have a verey important factor to the disease, in common...."the Love and Trust and Belief in our Higher Power...watching over us...and an Awesome Lord He is." I. too .trust I will have an undying courage to face whatever is neaxt, but as you staed...noone with this condition knows from one day to the next. just what that might entail. I have felt. for weels now, the many changes occuring withion, and as you said, noone can see that...but we as victums...feel and know it is happenning. I know what you mean ...when you say...[people, family, friemds will question you, as though you're making it all up for attention. It is sad, indeed, and I would trsde it all some(moet) days, just for s little relief. I speak to God, almost 24/7...for iI know this is not within my control. I dare not ask "why", but I feel I have led a good Chriiatian life, and cannot help but wonder about the reasoning to all of this. But..I guess it matters not who one is or what their backgrounds are...this disease, as you said, can/will stike when and whom it wishes. I ask that I stay in your prayers, as you will be in mine, and May God continue to Bless you and yours, today, tomorrow, and forevermore.
Yours truly, In Christs' Service, Janet R. Strychalski |
| Name: | Turei Heke |
| E-mail address: | mr_heke@hotmail.com |
| Name: | melissa washington |
| E-mail address: | mwcandygirl@aol.com |
| Comments: | hi, i love your site its really helpful.i would like to talk to other people with scleroderma,i have had it about 7 months.if anyone wants to talk e-mail me i would greatly appreciate it.its really hard talking about this to people that have never heard of it,thanks alot!!! |
| Name: | Jane M. Erickson |
| E-mail address: | Frostediris@yahoo.com |
| Homepage URL: | http://allmystemcells.com |
| Comments: | I also have Scleroderma. My diagnosis was called "Limited" in other words, limited skin involvement. I was blessed with lung involvement and found my respiratory situation failing quickly. Thanks to a transplant doctor, I found a stem cell transplant which stopped the progression of my disease, my skin involvement is returning to normal, my fatigue is gone (!) and my lung involvement is getting better. Praise God! I want to tell everyone about this alternative. If you are interested you can contact me, or check my website. It is an alternative with a zero per cent mortality rate. It is still in clinical trials. A stem cell transplant might not be for everyone, but you will never know if you don't check it out. I only want to educate and bring hope. Be well, and live each day for its beauty. Best, Jane |
| Name: | Jane M. Erickson |
| E-mail address: | Frostediris@yahoo.com |
| Homepage URL: | http://allmystemcells.com |
| Comments: | I also have Scleroderma. My diagnosis was called "Limited" in other words, limited skin involvement. I was blessed with lung involvement and found my respiratory situation failing quickly. Thanks to a transplant doctor, I found a stem cell transplant which stopped the progression of my disease, my skin involvement is returning to normal, my fatigue is gone (!) and my lung involvement is getting better. Praise God! I want to tell everyone about this alternative. If you are interested you can contact me, or check my website. It is an alternative with a zero per cent mortality rate. It is still in clinical trials. A stem cell transplant might not be for everyone, but you will never know if you don't check it out. I only want to educate and bring hope. Be well, and live each day for its beauty. Best, Jane |
| Name: | sheila |
| E-mail address: | shekay1403@hotmail.com |
| Homepage URL: | http://www.artfv.com/music/styles/regional_and_ethnic/ |
| Comments: | You know hun you as a person is burned in my head so deep it's amazing the impact you have puttin on me and my heart...... there are months that go by and the pain is calm but then other times it's like a big turn for the worse when I start to think about it too much and get down I come to your website and my frown gets turn upside down ...... you are my online angel that will never be forgotten.........Love Sheila |
| Name: | KETURAH FULLER |
| E-mail address: | keturah_fuller@mobile-da.org |
| Comments: | MY DAUGHTER PASSED AWAY AUGUST 29, 2003 WITH SCLERODERMA. SHE WAS 31 YRS. OLD AND HER SON WAS 2 YRS. OLD. I JUST FOUND YOUR WEBSITE AND JUST LOVE IT. I HAVE FOUND SO MANY PEOPLE THAT I COULD TALK TOO. IT HAS BEEN VERY HARD FOR ME TO DISCUSS WHAT SHE WENT THROUGH BUT IF I COULD HELP ANYONE I WOULD LOVE TO TALK WITH THEM.
I WILL BE THINKING OF YOU AND GOD BLESS. |
| Name: | KETURAH FULLER |
| E-mail address: | keturah_fuller@mobile-da.org |
| Comments: | MY DAUGHTER PASSED AWAY AUGUST 29, 2003 WITH SCLERODERMA. SHE WAS 31 YRS. OLD AND HER SON WAS 2 YRS. OLD. I JUST FOUND YOUR WEBSITE AND JUST LOVE IT. I HAVE FOUND SO MANY PEOPLE THAT I COULD TALK TOO. IT HAS BEEN VERY HARD FOR ME TO DISCUSS WHAT SHE WENT THROUGH BUT IF I COULD HELP ANYONE I WOULD LOVE TO TALK WITH THEM.
I WILL BE THINKING OF YOU AND GOD BLESS. |
| Name: | carrieann smith |
| E-mail address: | carrieannsmith@btinternet.com |
| Comments: | please send me one of your fairy poem plese. |
| Name: | Victoria from Nashville, TN |
| E-mail address: | catsville@juno.com |
| Comments: | April,
I understand your story all too well. My Mom was diagnosed with Scleroderma in 1979 after living with the symptoms for 3 yrs. prior to that. 3 weeks ago, 11/09/05, Mom passed away in her sleep, tired, worn out, but courageous. She never let the disease slow her down and lived an amazing life of reaching out to others in need. Now she resides in the ultimate pain-free realm of God which we call Heaven, and I am left behind to deal with the pain of her departure...Scleroderma may have effected her appearance, but it never effected her spirit and detemination to be a blessing to others. April, I pray that you, too, will know the fellowship of Christ and that your life may be a shining light to all who see it! Your friend in Nashville, Victoria |
| Name: | Willie Colleen Branagan |
| E-mail address: | wbranaga@twcny.rr.com |
| Comments: | Thoughts, prayers, blessings be with you. My friend's sister-in-law also has a form a scleroderma. I was unaware of all the kinds there are, so I don't know any specifics. I cannot but know how ignorant I am about so many things. All I can do is pray for the many things about which I know nothing. Is ignorance a form of blindness? I can only keep searching and hope there are those with wonderful hearts and minds, like yours, who are willing to share and educate. We all need to show one another more compassion. |
| Name: | Lydia Megerle |
| E-mail address: | Megerle@Mail.com |
| Comments: | Hello April,
When were you diagnosed with scleroderma at what age. What state are you from? It has been only one year and I feel as if my live has been turned upside down. Please feel free to contact me and I would like to know what you do to releive pain without having to take pain pills. Please write back... Thank you. |
| Name: | karen |
| E-mail address: | kafio@aol.com |
| Comments: | damn! i am a good listener, hang in there you are an inspiration. |
| Name: | s p a c e m a n |
| Homepage URL: | http://www.wtv-zone.com/spacemany/home.html |
| Comments: | Hello April, Your Friend (°–°) Here, Wanted To Say How Much I Admire Your Spirit, Going Trough So Much So Young & Still Keeping A Positive Mind, You Are Truly A Role Model. Keep On Keepin' On Girl !!!!!(°–°)!!!!! See Ya Later, Bob
|
| Name: | lynn |
| Comments: | Hello,
I do not "have" anything ,( was told might be CFS or fibro, it was probably from the CO from the heater) but 7 yrs ago when doing research to rid of pain and exhaustion..... Had gotten found a web site on ADD and Fibromyalgia and MVP. Pat who has the web site had all these and found the ADD medication helped then her dealing with NUTRITION mostly. I have noticed the similarity between so many illnesses. They seemed to be like allergies. So when I stopped milk, my IBS just about dissapeared. sOME FOODS might NOT be a food for you. Tried ridding wheat 6mths later and shoulder pain and weakness went away and stopped feeling so anxios. Just in case this might be helpful am writing it. Currently going thru lots of stress and the headaches and what feels like toxins under skin are partially back ( Just thought I had whipped it. ). Lynn |
| Name: | Bev |
| E-mail address: | Fluteypenguin@hotmail.com |
| Comments: | I've been recently diagnosed with diffuse scleroderma. I too had many symptoms for several years before it was all put together. Thank you for your story and photos. I will keep you in my thoughts. |
| Name: | adrienne |
| E-mail address: | agerianluvs@aol.com |
| Comments: | my name is adrienne gallo and ive had scleroderma for the past 8 years... i am now 16 years old. and ur really inspirational. i dont know if u still frequently check this but... email me.. it would be great to chat with u. |
| Name: | Rupa James |
| E-mail address: | rupsss@hotmail.com |
| Comments: | Hi April!
thank you for this amazying site. i am a christian 27 yr old woman in pakistan. my mother is suffering from scleroderma. she was diagnosed after two years of changing doctors and numerous tests, etc. no body could figure out wht she had. finally last year she was diagnosed. its been a struggle for all the family, to watch someone who was always active and the perfect mom lose everything and become bed ridden. now she is too weak to walk too much or sit too much. Through your website i can show her that she is not alone. Thank you once more. God Bless You. |
| Name: | Lisette Weston |
| E-mail address: | lisetteweston@yahoo.co.uk |
| Comments: | Dear April
I entered your webpage through a link set up by Tomz on the IAISND (Neil Diamond)fan site. It is such a beautiful site, it really moved me. I wanted to say best of luck with your surgery - I will pray for you and I wish you all the happiness you clearly deserve. Lisette Weston x |
| Name: | darlene |
| E-mail address: | bogota954@yahoo.com |
| Comments: | I am a nurse and one of my patients I have seen looked like he has scleroderma I mentioned it to another nurse and possibly can it might be. I am so sorry to hear of your condition god bless and hope all goes well. |
| Name: | Joy |
| E-mail address: | sunshine41@writeme.com |
| Comments: | I found this site by "accident", as I was searching for a poem I just heard on my Christian radio station. I typed in "be still and know that I am God", and your wonderful site was the 11th "hit" I received. After reading your beautiful, touching poems, I realized that I didn't find this site by "accident", I was lead to it. You see, I am an LPN, studying to become an RN, and my next major test is this Monday, and scleroderma is one of the diseases on it. Your site helped me see scleroderma as much more than a disease in a textbook, and I thank you for that. Joy |
| Name: | LUCILLE ST.ONGE |
| E-mail address: | LUCYLOCKET3@WEBTV.NETI AM SO SORRY |
| Comments: | I AM SO SORRY,BUT REMEMBER, BEAUTY IS
ON THE INSIDE. HAVE FAITH. GOD WILL TAKE OF YOU. |
| Name: | Debby Keen |
| E-mail address: | d2hon@aol.com |
| Comments: | Thank you for sharing your story and information on scleroderma. |
| Name: | Valerie |
| E-mail address: | marval84hotmail.com |
| Comments: | Hi There
I was diagnosed two months ago with Scleroderma and i could not beleive it as i have dealt and lived with Rheumatiod Athritis for 30 years,and now they tell me i have this,i have also developed Pulmonary Hypertention which is servere , when i found out i just cryed for days thinking i do not want to die im not ready,after just spending two weeks in hospital and seeing patients alot worse than myself,i see things different now and im going to enjoy what time i have whether it be a short or long.Take Care to all those out there living with this and dont give up.Valerie |
| Name: | Heike |
| E-mail address: | Eurolabinc@Aol.com |
| Comments: | I don't really know how I ended up here.I actually looked into heartdisease for my Mom.
I just wanted to let you know that I am very impressed with your site and I know that your work will give many people hope and comfort, that they are not alone . I wish you could see my friend Anna. She could probably shed light on the changes your body is going through .She does Bodytalk and it is amazing .I could not believe it myself . Anyway I wish you all the luck and strenghth you need and keep up your excellent work you are doing . Heike |
| Name: | April Christine Nathaniel |
| E-mail address: | sassnfrass@webtv.net |
| Homepage URL: | http://Your here already! |
| Comments: | I want to personaly thank all of you who sign this book and to those who add their own part to their own story! This is what I wanted when I did this and also just to help others understand this disease.
I made this site to be pleasing to the eyes and also nice to look at and learn from and I carefuly chose each image I used to achieve this goal. I do hope ya'll have found this to be different from the sterile types of sites that tell what scleroderma is, I wanted this to be something much different than what you all have seen when researching scleroderma like I did myself. Thanks again and love and hugs to all, April |
| Name: | margaret |
| Comments: | Hi
Sorry to be a pest but I have had a few emails to my email I posted the address for and wonder if you could withold my email address on your site. Really appreciate it, thanks again. Margaret Margaret, No Problem, I took it off for you! Thanks again for the signing of the book and your story. Hugs, April |
| Name: | Ruth Berlien (aka Flame on my email) |
| E-mail address: | hollyholy46@hotmail.com |
| Comments: | Hello April, I was sent a link to your site by one of your online friends. I'm not sure why...but I know that nothing is a coincidence in life--so there is a reason I am signing your guestbook; I just don't know it yet. I find your strength amazing. I have IBS so I can relate to that portion of your disease. Have you tried biofeedback training? It helped me, but stress is stress and when under stress nothing helps; I stopped meds, they only gave me side effects and did nothing for the IBS. I also have arrythmias, not as severe as yours. I will keep you in prayer always. |
| Name: | Julie Preston |
| E-mail address: | juliep10@bigpond.com.au |
| Comments: | I thought you webpage was very imformative and helped me understand why my mother died from complications of this disease. I now know what she must have gone through without ever letting on.
I hope every goes well for you regards Julie |
| Name: | Sheree Mustard |
| E-mail address: | shereemustard@yahoo.com |
| Comments: | Hello-----I found your web page while looking up information on PH. My sister has CREAST Syndrome and now is being tested for PH.My prayers are with you, as they are with my sister, Mary. I am very afraid for her.First she was diagnosed with sclerderma, but then was changed to CREAST Syndrome. Now this.I am a nurse,so the more you know the more you worry. Thankyou for sharing your story and God Bless. Sheree Mustard |
| Name: | Kathleen Shea |
| E-mail address: | kshea@martinconklin.com |
| Comments: | April: Your site is wonderful. My fabulous sister Karen battled scleroderma for more than two decades. She went through all the predictable changes in her appearance, but she was still my sister. Karen's scleroderma taught everyone who knew her a great deal about compassion and empathy. I wish you well in your fight against scleroderma. Take good care of yourself. I very much hope that inroads will be made in research that can help all the people who suffer silently with it everyday. My sister was living proof that you can live a long, productive life with scleroderma. Hang in there! Kathleen |
| Name: | Dennis Pascal |
| E-mail address: | dennisp@candw.ky |
| Comments: | I have just been diagnosed with scleroderma, after aprox one year of going to just about every typer of doctor, i am in constant pain,,,but for some good reason ,,,now that i know what i have i feel good already, i am starting my prescribe drugs now,,,and willtry to follow up to see what happens,,,my face is numb on one side and i am weak in my arms and legs,,,,I have three kids,,,and i am 33 years old,
Hope to hear from some one so we can compare notes,,,thanks for the space,, regards Dennis Pascal |
| Name: | Nancy |
| E-mail address: | catastrophic_blackheart@hotmail.com |
| Comments: | hi i love all your picutre i'm not anywhere close to being an artist but i just think all those drawings are amazing, and they resemble whats in my head but i cant really draw it. Anyways i'll get to the point, I'm getting my very first tatoo and since those stay with you forever i want it to be origional, so i was wondering if you could maybe help me with that i'm willing to pay for the drawing if you like but please email me with a response(catastrophic_blackheart@hotmail.com) bye |
| Name: | Samantha |
| E-mail address: | samloucks@gmail.com |
| Comments: | Hi there,
My friend found this site and sent me the link and it was nice to browse through it. I'm 16 years old and was diagnosed with Linear Scleroderma when i was 8 and a half. It is on my face so over the years has caused a lot of deformation and such.. I will admit it caused me severe depression for the better part of my life so far and has been difficult to deal with but I'm getting much better. I feel great about myself most of the time and have the ability to brush off rude comments or stares I so often receive. Thank you for making this website, I'm sure it will help many people as well as spread awareness about Scleroderma. Sincerely, Sam* |
| Name: | Maria |
| E-mail address: | faithnhope60623@yahoo.com |
| Comments: | My name is maria and i also have scleroderma. I was touched by your story, even though it's not good to hear that someone is suffering, it's good to know that someone else understands exactly what you're going thru. I have some support but it's not the same. I also saw your pictures and you are beautiful and you have a beautiful family.I guess that's one thing that we don't have to worry about is the wrinkles, right! Take care,you'll be in my prayers. |
| Name: | Bob |
| E-mail address: | i_fight_spam@yahoo.com |
| Homepage URL: | http://www.wtv-zone.com/spacemany/home.html |
| Comments: | A Big Ol' Hello !(°–°)! I Think Your Site Is Well Done, Bless You !
|
| Name: | michelle |
| E-mail address: | peachertaker@yahoo.com |
| Homepage URL: | http://http://www.freewebs.com/peekerspage/picturesofourdad.htm |
| Comments: | i just wanted to say you have done an awesomw job on your site. my dad died jan. 10th 2005.
i am just finding myself trying to be strong for everyone else in my life. this morning is the first time i have actually just really cried alot. i love your poems, and definitley relate to them for my fathers sake. i loved him dearly. and miss him so much. thank you so much for making this site for people like him and you and all the family and friends of scleroderma patients. my dad donated his body to a place in utah, that researches scleroderma. he wanted to help others.my mom is having the hardest time with this. my dad had one of the worst cases. you can tell by the picture on link that i have sent above. that pisture was taken like 2 days before he died. he kept seeing a cat jumping and playing around his nursing home room. he called him little guy. but could not tell us what little guy looked like. i will pray for you, because i know from what dad went through, this disease is horrible, and painful, it pretty much ate his insides. there is a medication you can take he said to slow the scleroderma down , but he was allergic to it. for the day mom and dad found out he had this. it was like 16 or 17 years when he finally passed. i hope you are doing ok. i feel for all that have this . sincerely, michelle |
| Name: | Deb |
| E-mail address: | ecofege2@webtv.net |
| Comments: | My adopted sister is also choctaw indian and suffers from systemic scleroderma.I pray for her everyday and will add you to those prayers.Stay strong!! Deb |
| Name: | beth |
| E-mail address: | bethgreen05@yahoo.com |
| Comments: | You have a beautiful sight. I'm a huge believer in inside beauty and i've read all of you poems a few times. Thank you for giving me the chance to hear another person feels the same way.
Peace and Love, Beth |
| Name: | Melinda Tucker |
| E-mail address: | melindagayedixie@aol.com |
| Comments: | thanks for the insight,,i have it too..your hands look like mine...when i wake up in the mornings i have to stretch my mouth open..my skin is tight...i have 2 places on my shins that are very slick.. I Hope you do okay..and will be in my prayers..Melinda |
| Name: | Roxanne Voeltz |
| E-mail address: | RoxyKtty@aol.com |
| Comments: | Just wanted to thank you for sharing your experience and thoughts. My husband's best friend was just diagnosed with Scleroderma. He is 39 years old married with 2 young children. We are all very scared for them and are just now becoming knowledgable about this condition. I have been scouring the web to find information. Today I have been checking out personal experiences, I appreciate you sharing, thank you. Any advice you have for ways we can "be there" for our friend and his family would be appreciated. Thank You and God Bless. |
| Name: | Brenda Boody |
| E-mail address: | bboody7216@aol.com |
| Comments: | I know how it feels to , for I received my news of scleroderma in November of 1985. God Bless you and keep you strong to keep on going.
I take one day at a time. Every morning I thank God for another day with my family for we all ill or well don't know how long our life here on earth is for. Keep your chin up and your head up high for it could be worse. |
| Name: | Kathy |
| E-mail address: | KitKath@aol.com |
| Comments: | Dear April ,
Really enjoyed your web site . I lost my best friend and sister to this disease. She was so brave and never complained . I wish you good luck . Thanks for sharing as my sister Leah didnt talk much about her disase .God Bless you Kathy |
| Name: | m |
| Comments: | you just deserve one predicate:
++++++++++++ MS. COURAGE! +ü++++++++++ seldom seen such an amount of courage by showing real, unedited pics to people to demonstrate what 's.' can do! but you still seem to have all courage to put up with this and to fight! Yes, that's the gist: KEEP ON FIGHTING! You can only win. |
| Name: | Linda Egbert |
| E-mail address: | legbert@peoplepc.com |
| Comments: | I have fibrom. so I know pain also. But my ex husband we are great friends. Can not work is stiff. cannot eat with out choking ,and his hands get so sore in the cold. the thing is his grandma is full american indian from the choctaw Oklahoma res. His father grew up on the res. early 1911 thank you for posting this. I will see it that he gets to a Dr. thankyou again Linda |
| Name: | stephanie |
| E-mail address: | missteviw@comcast.net |
| Comments: | I have seen a movie based on scleroderma. I just want you to know that I'am praying for you and your family.
MAY GOD BLESS YOU ALL |
| Name: | Julie Lamaack |
| E-mail address: | jewels3@netins.net |
| Comments: | My mom just got put on kidney dyalisis due to her scleroderma and the doctor is saying the scleroderma antibodies are active in her system, she was diagnosed around 5 years ago and seemed to be in a remission type period for a while but now think we have to face the horrible facts and have enjoyed this website very much. |
| Name: | Sheila |
| E-mail address: | shekay1403@hotmail.com |
| Comments: | Hello my name is Sheila I have been diagnosed with scleroderma and I had felt like giving up several times during certain bad days and nothing would make since to me anymore (why me)? ! is what I kepted asking myself then I came along your sight and you put so much more light into life it's awesome I thank you for a boost and I love your sight and I feel like I have know you for awhile is how my your poems touched my heart! people like you make me smile! love sheila |
| Name: | Len Winters |
| E-mail address: | lenwinters@yahoo.com |
| Comments: | My God! You have had it all.
I have had 3 catheter ablations. First one was for Atriel Flutter. It worked well. But then, I started with Atriel Fib. Two Pulmonary Vain ablations did't help. Maybe a little bit. Had a pacemaker installed 3 weeks ago and have not had an episode since! I also had bradycardia. I am now using a beta-blocker, Metoprolol. But I also experience fatigue. I play tennis 2/week. Before the pacemaker I was doing very well even though I experienced an episode 2 to 3 times/month. Now, I don't have any episodes but plenty of fatigue. I expect that I will either reduce the Metoprolol dosage or allow the pacemaker to set my heart rate during physical activity. Right now, my sinus node takes over when I excercise. I am in Los Angeles. Dr. Nadanamee (in Inglewood, CA) performed the pulmomary vain ablations. I am convinced that he pads the statistics. I would think that 50/50 is about the correct success ratio. Anyway, my heart goes out to you. Your spirits seem high. Keep it up. LOL |
| Name: | Alesia Rhodes |
| E-mail address: | peacefulliving@relivonline.com |
| Homepage URL: | http://www.relivonline.com/peacefulliving |
| Comments: | "IF THERE IS A WILL TO OVERCOME, THERE IS A WAY TO OVERCOME"
Many people have been helped and know longer suffer from the disease Scleroderma. BEFORE YOU DISMISS THIS MESSAGE, PLEASE REVIEW website and research the health stories of others who had lost hope but are living a pain free, healthier life. www.relivonline.com/peacefulliving Respectfully, from the heart of Alesia |
| Name: | oBo |
| E-mail address: | i_fight_spam@yahoo.com |
| Comments: | All My Blessings |
| Name: | jeanne polanin |
| E-mail address: | jkpolanin@aol.com |
| Comments: | I have been reading all your information which I feel wonderful to know someone out there has this.please if you can would you tell me if you had your metral valve replace or repaired? Im haveing a meeting with heart surgeon today hope you can help me out before i do something that may not help one way or another. I'm just learning how to e-mail I am on a free trail right now it will expire on dec 10th,please send me your thoughts. thank you |
| Name: | Gregory W. Parker |
| E-mail address: | snakegp@comcast.net |
| Comments: | Just letting you know, that I have the scleroderma, the systimatiic form for approximatly two years. I've been trying not to make this a big deal for my famlies sake. But the changes are coming so fast now, and the pain just constantly works on one's body and mind. Sometimes, I just want to giive up but then I see one of mind grandchildren and I just perk up and get going. I have some good days but for the most part they are bad. On those days I feel like staying in bed and just sleeping. Maybe we can chat sometime and talk in more detail about our conditions. |
| Name: | EdieAnn |
| E-mail address: | leichtm@localnet.com |
| Comments: | What you have wrote is beautiful. I am so happy to see you have a positive outlook on things...your poems about your father made me cry. I had a family member die of scleroderma...she was 32, a mother, a wife ....she lived 6 months after she was diagnosed... before she died, she had become victim to a wheelchair - she could bearly function - yet, she still wanted to live. She did not want to die, her son was 2 at the time ...each time I think to her verbally expressioning how much she wanted life - it was taken away that night. She didn't deserve that - no one deserves this disease. My prayers go out to you!! |
| Name: | Butch |
| E-mail address: | BUTCHMCHENRY@webtv.net |
| Homepage URL: | http://community-2.webtv.net/BUTCHMCHENRY/WELCOMETOBUTCHS/index.html |
| Comments: | Very nice website. Please come visit my website. |
| Name: | Jennifer |
| E-mail address: | jn_182@hotmail.com |
| Comments: | I just wanted to say the site looks great! You did a good job, the images are awesome, and the poems are better than ever! I'm proud of you for building a site that will help and inform others about this rare disease. Keep up the good work! I love you!
NOTE:......this is my oldest daughter!! April |
| Name: | Shirley |
| E-mail address: | to-busy-4me@webtv.net |
| Homepage URL: | http://www.angelfire.com/va3/webtv_mom/index.html |
| Comments: | You have such a beautiful outlook on life~` ive enjoyed reading your pages and now this last one you just posted in the group! Beautiful --you are.God Bless You !
Shirley |
| Name: | Sherry |
| E-mail address: | RedChaos@webtv.net |
| Homepage URL: | http://d21c.com/Angel2000/index.html |
| Comments: | Hi April,
Thank you for your words to me on your "credit page". :) You're doing a wonderful job rebuilding your site after you lost it. I think your site will help many people who are needing it. Great job. Keep the faith, stay strong and you know how I feel about allowing illness to knock ya down, never allow it. This too came be overcome. :) Love ya, Sherry |
| Name: | Butch |
| E-mail address: | BUTCHMCHENRY@webtv.net |
| Homepage URL: | http://community-2.webtv.net/BUTCHMCHENRY/WELCOMETOBUTCHS/index.html |
| Comments: | Very nice website. Please come visit my website. |
| Name: | Joe an Niecee |
| E-mail address: | Therebooter@webtv.net |
| Homepage URL: | http://www.angelfire.com/al4/therebooter/FAST__TRACKS |
| Comments: | Hi April, Great Job on the pg's you did.. we always keep you in our prayers an our thoughts.you have so many people who love you we are always here for you we wuv ya big warm hugszzzzzz Joe an Niecee |
| Name: | s p a c e m a n ß(°–°)ß |
| Homepage URL: | http://www.wtv-zone.com/spacemany/home.html |
| Comments: | I'm So Glad You Are Rebuilding This Site April, It's Well Done ! ...A Very Serious Site But You Make It Seem So Positive :) ...And Surely Helpful And Inspirational To Many. Best Wishes
Bob |
| Name: | Tom |
| E-mail address: | knacckelflerg@wetv.net |
| Homepage URL: | http://knack.webbywarehouse.com/LOOKINGBACK.html |
| Comments: | April,
A wonderful site that everyone should see Very informative Well put together and easy to follow. Always in my thoughts Peace & Love Tom |
| Name: | Doris Simmons |
| E-mail address: | SimmonsR58@aol.com |
| Comments: | I have been having problems of swelling and restless leg syndrom. I now have S.O.B and stay very tired and fatigued. I try to get up but between my legs, ankles and feet and sob, I find my self not able to function. I am haveing joint and muscle pain all over but more in hands knees. They still have not diagnoised me with anything at this point. I will go back to the Doctor Wednesday for the test results from my renal mri.
I will add you to my prayer list because I know that he does miracles every day. He sends them whether we take advantage of them or |
| Name: | prem k aurora |
| E-mail address: | pk_aurora@hotmail.com |
| Comments: | Dear Lady,
It is really great what all you have written regarding our common friend scleroderma.It is very interesting reading as simple english language has been used and very much understandable. Lady, you are strong no doubt,and by reading your assesment, it is making other scleroderma VICTIMS also strong to fight this disese. I am 49 year Indian male and have the same disease - P.S.S. Lady please keep it up you are a great fighter bi bi for know and thanks for your updates |
| Name: | Michelle |
| E-mail address: | mlss24@yahoo.com |
| Comments: | Hi April,
I was diagnosed in 2000,Thank you for such an informative sight,Iv'e had a few rough days,reading through your web sight help alot....Thanks again Michelle (Australia) |
| Name: | Judy Berry |
| E-mail address: | DINKIDO45@aol.com |
| Homepage URL: | http://hometown.aol.com/dinkido45/ |
| Comments: | I just wanted to say, that I enjoyed all the time and input you have given this sight you started.
I was diagnosed with the progressive systemic sclerosis in 1997. It has attacked my lungs. I live day for day and thankful for each I am given. I am always available to listen and posibble help out anyone I can. My family knows the disease I have. When I try to talk and explain about it, they act like they are off in another world or something. I tell them I am not ready to die yet but I need to discuss things and make sure all is in place for when that day happens. Take Care God BLess Judy Berry Virginia Beach,VA |
| Name: | Bob |
| E-mail address: | boblood@webtv.net |
| Homepage URL: | http://www.wtv-zone.com/spacemany/home.html |
| Comments: | Very Informative And Couragious Site April, Well Done And I Wish You All The Best
Bob |
| Name: | Sari |
| E-mail address: | Muffin17@webtv.net |
| Homepage URL: | http://www.angelfire.com/pa2/sfarmer/recipeintro.html |
| Comments: | Hi April
I came here from the HPO group today, and what a wonderful thing that you did in making this website to inform others like myself of this disease. I have only heard the word Scleroderma a few times, and really didn't know just what it meant or how it effects a person, but now I do. You made everything so easy to understand, and by showing your pictures, it gives us some visability, but I do want to let you know that you are a beautiful person, inside from your writing and ourside from your pictures. Thank you for sharing your story. |
| Name: | Jeremy P |
| E-mail address: | meowmixfun01@hotmail.com |
| Comments: | Hi I am 16 year old boy that lives in Texas. I have had Scleroderma for almost all of my life. It is a rare thing to show up in males my age. Its been a difficult journey and I am just a young man looking for awnsers. I have tried to live a normal life for years and it is so hard...My dads in the navy and has been gone for 3 and a half years in the war I have yet to see him 4 times for a few days at a time. Its been tough raising my 13 year old sister and helping my mom out. Trying to be a 'normal' teen at high school has been a real struggle. I know i can make it..Well anyone that wants to know more about my life story just email me.
~Jeremy |
| Name: | Edith McKinsley |
| E-mail address: | edithmckinsley@aol.com |
| Comments: | Thank you. |
| Name: | Carlos Alonso |
| E-mail address: | cda4@hotmail.com |
| Comments: | Hi April,
I just read ur page very nice. I live in San Antonio. I too have scleroderma was diagnosed in Jan.2001. I am 28yrs old. I'd go into more but I have tried contacting previous persons w/this and didnt get a reply. I hope you get this and respond and maybe help each other I look forward to hearing from you. |
| Name: | Donna |
| E-mail address: | ladydixierebel1@aol.com |
| Comments: | I tried to Email you but it was returned. Your site was both lovely and sad, but informational. I was recently diagnosed with Autoimmune Disease and my doctor brought up the word "scleroderma" as there are many changes in my face recently. Your site is wonderful... may God bless you and a cure be found soon. Love, Donna |
| Name: | Patty Waszmer |
| E-mail address: | Sscottiedogs@aol.com |
| Comments: | Wow you did a wonderful job with your website. I am impressed. I am 37 and have had same type of Scleroderma since 20 years of age. If I can be of any help to you questions or such..you can write me anytime. Feel Well.
Fondly Patty |
| Name: | Mary Fulghum |
| E-mail address: | mwflvs-Apps@webtv.net |
| Homepage URL: | http://community.webtv.net/mwflvs-Apps/MYFAMILYZOO/ |
| Comments: | Hi April! I tried to email you a while back, and it bounced, so I knew you were offline, at least I hoped that was all it was. I've been really worried about you! Then, it occured to me to check my old emails, and check the links to your sites, and that's when I found out what the deal was. I sure know what it's like to be short of the moolah! I hope you can get back on the webbie soon! I still miss your posts in the newsgroups, no matter which one's they are! Take good care of yourself, of course I know you are, and hurry back to the web soon! ((HUGS)) ~Mary~ |
| Name: | APRIL...the owner of this site |
| E-mail address: | lirpashowers@msn.com |
| Homepage URL: | http://see page for index |
| Comments: | THANK YOU ALL FOR FINDING MY SITE AND SHAREING YOUR STORIES. I THINK I WILL NOW NEED TO ADD A SPECIAL PAGE DEDICATED TO OTHER PEOPLES EXPERIANCES. I AM CURRENTLY OFFLINE DUE TO FINANCIAL DIFFICULTIES (AS IF WE DON'T KNOW HOW THAT CAN BE) BUT HOPE TO BE BACK ON SOON. I AM AT THE LIBRARY NOW....LOL LOOK ON MY STORY PAGE TO SEE MY UPDATED STORY. THANK YOU ALL SO VERY MUCH FROM ONE VICTIM TO ANOTHER, WE ARE WHAT I CONSIDER TO BE BROTHERS AND SISTERS OF SCLERODERMA!!
LOVE AND HUGS, APRIL |
| Name: | Lydia L. Pineault |
| E-mail address: | lydifeline@yahoo.com |
| Homepage URL: | http://dailyoverlook.com |
| Comments: | Hi April,
I love your site and the music...all of the Quicktime player would not load...but that's ok, not your problem. I truly loved reading your story, you are so wonderful and brave to reveal so much about yourself and I know there is very little that can be done about this disease but your courage is admirable and I hope for your sake you may get some resolve to all of your problems, or some research may find some help before it is too late for current victims. I am still convinced I have Scleroderma, yet I saw the top(reputed specialist) here in Massachusetts Boston Hospital Dr. Joseph Korn and he did confirm I had Raynaud's Phenomena but I had no other severe obvious outward presenting symptoms and he was very abrupt and rude and left the room with my husband and I trailing behind him, as he talked to us over his shoulder, us following like wounded little puppies. I am currently 52 a Birthday coming up in December. I was told when I was 21 that I had esophagitis Dr. Link explained that the little flap door in my throat is defective and does not stay shut. I was taking Mylanta II twice a day for about a year and managing my diet well and experienced about 10 years of fairly decent health. In 1978 I was shoveling snow for our very large blizzard here in MA and shortly after that I started to have neck and shoulderblade pain on my right side, my husband and I thought it was from shoveling the snow and then driving a School Bus and leaning over to open and close the door made it worse so it took about 5 years to get that diagnosed as a pinched nerve. I delt with that pain and have been ever since. I started to have lower back pain in 1991 and I thought that was from exercise so I stopped touching my toes 100 times a day and had some minor relief and then it came back. I had MRI's finally in 1993 that revealed many slightly herniated discs. I continue to deal with that pain also, all of this damage seems to be collecting exclusively on my right side. I have many, many other Neurological problems numbness and tingling in hands and feet extended abdomen after eating, dysmotility, I only get two hours sleep when I first lay down and then about 45 minutes a shot after that. I have not slept a full 8 hours sleep duration in about 6 years. I am now going on three years next month (OCT) since the you know what really hit the you know what. When I started to go through Menopause three years ago all the physicians said the Palpitations, Night Sweats and profuse Sweating were all due to that, well I am still here with all those problems 3 years later. My right hand has so called Carpal Tunnel Syndrome, how ever it does not look like the classic presentation instead my fingers are starting to overlap each other and my fingernails just tear off I never have to file them because they do not grow long enough and they have flakes and white lines and ridges, that I keep telling the physicians is because they do not get enough circulation at night when I lay down on my back they get numb, so I explained I tried laying on my sotmach and that was worse, so guess what? It is not my discs, it's this bunch of so called fat in my gut and I keep telling the physicians that it is not fat it is connective tissue disease. I have been through all the required tests Endoscopy, Colonoscopy, Barium studies with follow through, blood work MRI's, CAT scans on and on and on and they still do not know what the Hay Hay my problem is. Someday's I just do not know how I will make it through I am never comfortable or with out pain, when I sit her too long at the monitor I have to get up and move around several times because I hurt, I have seen Vascular Surgeons who say I am fine just because it does not effect my big arteries and veins does not mean that my microcirculatory system is not free of pain, I look at my nails and thin skin and get very disgusted. Any way sorry to go on and on, at some point I will write again and give you more detailed information about all of the studies and symptoms and perhaps by then I will have encountered a physician who knows more then just his particular specialty or cares to do a little extra research on me instead of just bouncing me back and forth from one speicialist to another. Thank you for reading, Please take care or yourself as best as you can, Good Luck and God Bless, Sincerely, Lydia in Massachusetts |
| Name: | Jud mcquaid |
| E-mail address: | judsondora@aol.com |
| Comments: | I to have scleroderma I've been living with it since 1986, to this point I have lost the end of one fingure and just recently was told that it is systemic I'm 59 years old and my only concern is to see that my wife will not have to do without when I'm gone. I once heard it said that an injured bird doesn't fill sorry for it's self and I beleieve I will try to do the same. There are days that I find it hard to go to work. I do get depressed at times and then I think of the bird and go on. I enjoyed reading your site and only wish you the best. |
| Name: | Deborah Spottz |
| E-mail address: | zeppman18@netzero.com |
| Comments: | My name is Debbie and I live in Northern Kentucky across the river from Cincinnati. I appreciate reading your bio. I too was diagnosed with scleroderma in July 2002 but know that I had it at least one year prior with yet another year prior to that when the skin started darkening. I just found out today that it is now affecting my lungs. I have a wonderful group of doctors, my rhemotologist, my pulmonary function doctor, my family physician, my cardiologist. Thank god for them and I keep each of them informed of any changes and test results. Good luck to you. I too am a single Mom but fortunately, mine are 22 year old daughter and a 15 year old son. We just have to keep positive. |
| Name: | teresa Floyd |
| E-mail address: | Thefloyds0@aol.com |
| Comments: | You have a great page. I see myself here. Diagnosed with systemic scleroderma in 1991. Been in denial since. In january of this year the raynods got worse. Sores on the fingers that won't heal. Had surgery on july 2 on the left hand. incisions the length of 4 fingers and through the palm of my hand to just below my wrist. The scleroderma is getting worse day by day. Had to start physical therapy for my left hand. the skin is tightening and i can barely move my fingers or wrist. Have to have similar surgery on aug 20 on the right hand.
haven't been able to work since may and the fatigue is worse, the joint pain is worse, and the newest symptom is absence seizeures. I lose time. Last sunday I lost about 3 hours. My family said I was very out of character and could not remember anything that had happened in the last week. Just had the one episode but now they won't let me drive until the EEG (Brain Function test) comes back. YUCK!! Sick, tired and now maybe CRAZY!!!LOL. You have to laugh it's better than crying. Thanks for the page it is wonderful. Teresa |
| Name: | Nefertari |
| E-mail address: | nefertariw@hotmail |
| Comments: | Greeting from a fellow poet Iwas talking to my friend and co-worker Louise and she told me about you poetry and showed me your web site. I would very much love for you to come the the poetry spot on Almeda ever thursday at the Raggae Hut we star at 8pm you konw we do have cp time as poets go . my # is 7137727943 or 7133137148 wk please call. PEACE!!!!!!!!!!!!!! |
| Name: | ACAN Nathaniel,John A. II USN |
| E-mail address: | sanar_121@hotmail.com |
| Comments: | well i forgot to say a few things....first of all I love you...Second I am the typo prince.....lol....Third I like the background it looks nice.....Fourth I'll be going to Fallon,Nevada on 21July03 and hopefully soon after I will be going to camp Legune,North Carolina and Pensacola,Florida....while I'm in florida I'll get you those sea shell you wanted.....Fifth I want to thank you on behalf of all my fellow shipmates and fellow soldiers currently in battle away from their families and those who are here in the states protecting us all....thank you for your support and thank all those who support us fighting this war protecting our way of life...It's not an easy job...I work very hard for the little money i make....Thank you all.I haven't seen my family since january and i won't see them again till christmas...I am currently in Virginia Beach,Virginia....Thanx once again....
Air Traffic Controll Specialist Nathaniel,John A. II |
| Name: | ACAN Nathaniel,John A. II USN |
| E-mail address: | sanar_121@hotmail.com |
| Comments: | well mom i think that you are doing very well and i hope that this page does help others and gives them some comfort for i know you are full of spirit. |
| Name: | Mike |
| E-mail address: | JUngurean@webtv.net |
| Comments: | Great job! You have a way with words, that moves the heart. By helping others, you help yourself. |
| Name: | Jennifer N. |
| E-mail address: | jn_182@hotmail.com |
| Comments: | Awww! This site is really well done, maw! lol It took alot of work but it looks good and it shows. And I know that we will get thru this together, k? I love you! |
| Name: | Michael |
| E-mail address: | MichaelWild@webtv.net |
| Homepage URL: | http://community-2.webtv.net/MichaelWild/MICHAELWILDSWEBPAGE/index.html |
| Comments: | April....you are doing a wonderful job on this website and I hope it helps a lot of people.
Keep up the great work :) |
| Name: | Norbert |
| E-mail address: | starship-2001@webtv.net |
| Homepage URL: | http://norbert26.com |
| Comments: | i'm sorry to hear of your plight will pray for you god bless. |
| Name: | Tom |
| E-mail address: | knackelflerg@webtv.net |
| Homepage URL: | http://knack.250free.com/LOOKINGBACK.html |
| Comments: | April,
You have done an excellent job on this website.I learned so much reading these pages. You made this site easy to use and I am sure it will be a help to others. Peace & Love my friend Tom |
| Name: | Sally |
| E-mail address: | sally@simplysally.com |
| Homepage URL: | http://simplysally.com/ |
| Comments: | You are on your way !! You've already educated me about this....good job...
Your real beauty is obvious in your pages.....you can not hold the beauty inside !! You've done a great job on the site in content and display....Something to be proud of...Thanks for the enlightenment...!! |
| Name: | Lou |
| E-mail address: | lveronie@webtv.net |
| Homepage URL: | http://community.webtv.net/lveronie/ThePhilosophic |
| Comments: | Long time no hear from April---now I understand. Your courage really shows in your webpage---I sincerely hope people will draw strength from it. You're an inspiration! |
| Name: | Cat |
| E-mail address: | mapa7@webtv.net |
| Comments: | Hi April, I think that you are doing a great job with helping your self and helping others. I am so sorry for you and I will pray for you. I wish that thing's like this would never happen, but it does. Thankyou for sharing your story with the World. I am more then sure it will help a lot of people. I do not have Scleroderma, but from ready this it has open up my eyes to see that we should all live our life the way God want's us to. And that would be to love everyone. Life is so short, so we should all make the best of our life why we can. God Bless you April, and God loves you! Hug from...CAT |
| Name: | Jeannette ( Janice’s Mother) |
| E-mail address: | I don"t have one |
| Homepage URL: | http://Don"t Have one |
| Comments: | Hello April, I Am Janice’s Mother,I Have Heard So many Good Things about you From My daughter Janice.Janice Is Very Worried about you and cares about you very Much.I just read all of your Pages And It Hurt Me So bad To Learn Of All Your health problems In Which you have to Endure.I Am So Sorry you have To go through All Of This.At The same Time I Must Say Your Pages Are Very Pretty and Also Very Well written.I Think Its so beautiful That You Have taken the time To help and Inform Others Of this terrible Illness.I Admire Your Courage
April.Be Strong, Have Faith And Pray.God Is good he Does Hear Your prayers believe Me.I Wish You So much Luck On The 28th and I Hope the results are negative.And Again,Your Pages Are very Nice.God Bless You April.Love,Jeannette (Janice’s Mother) |
| Name: | Janice |
| E-mail address: | j_nyce@webtv.net |
| Homepage URL: | http://mssjay.250free.com/index.html |
| Comments: | Oh Sis,You Can Not Imagine How Deeply This Site And Your Story has Touched My heart.After reading All of Your pages I Broke Down And Cried It Hurts me so bad To Know That "You" Are Suffering So Much.And You Still manage To Laugh and make others Laugh.You truely Are Amazing
And So Strong God Bless You.It is A very Sad Site But, A very good one.Very Informative,very helpful To Others who may have This Dreadful Diasese.The layout and The Images are Beautiful.I am Very proud of you Not Only For This beautiful site But I am More Proud Of The "Trooper" That You Are.I Love You,I am Proud Of You,And please Stay Strong. God Bless You April.I Will Pray for you Everynight When I go to bed.Love Janice NOTE: My very good friend Janice passed away on April 7, 2005 of throat cancer, she will be GREATLY missed! Sadly, April |
| Name: | Lynn |
| E-mail address: | mousecard@webtv.net |
| Homepage URL: | http://www.angelfire.com/myband2/images/MYCORNEROFTHEWEB.html |
| Comments: | Excellent Site, April!
I am so sorry you are going through this! But it is wonderful that you can share! I am sure your site will help someon!! Lyn |
| Name: | dƒp Mi§i§ippi |
| E-mail address: | davidfrompetal@webtv.net |
| Comments: | One of my favorite down home expressions is "making a silk purse out of a sow's ear".
You have taken a set of circumstances that could be compared to the desirability of a sow's ear and filtered them through your beautiful spirit and made a silk purse website! -=[{(big-O-redneck-hugs)}]=- |
| Name: | S p A c E /\/\ a /\/ |
| E-mail address: | You Know |
| Homepage URL: | http://community-2.webtv.net/boblood/SpAcEMaNsLinksTools/ |
| Comments: | To My Best On Line Friend... I'm Very Proud To Know You And Want You To Know That You Are Truly A Good Person And Wish That You And All Afflicted May Some Day Get All Better.
...This Site Is Good April, Just Like You. Bob (°–°) |
| Name: | Diana (Lady Di) |
| E-mail address: | TXONE@webtv.net |
| Comments: | Wow, April. You may find this hard to understand, but reading your story made me feel better about the fact that I have terminal breast cancer. I've beaten the predicted time given to me but there is no cure for it. But I do not have to face half the problems you do, even though I've been battling this since my first go-around in 1989. I know how hard it must be to write your story and to cope, but stay strong gal...there is always hope.
Hugz Di |
| Name: | Marvaline |
| E-mail address: | KrystalMeow@webtv.net |
| Homepage URL: | http://www.wtv-zone.com/Marvaline/SD/directoroy.html |
| Comments: | April, wow - I was reading your new site on Scleroderma. You wrote it beautifully. So easy to understand. This site will be a tremendous resource for others. These kinds of sites are so meaningful. I believe when people share like you have, it is the greatest service one can offer another. I am greatly sorry that you are being affected by this disease. I pray that new research and treatment will give you your life back. And I will keep you close in prayer as you deal with this illness day to day. God bless you. ~Marvaline |
| Name: | BEE |
| E-mail address: | GeeNeeBeeMee@webtv>net |
| Homepage URL: | http://http://community-2.webtv.net/eppiegal/MEMORIES/ |
| Comments: | YOU HAVE DONE A EXCELLENT JOB HERE. I DO NOT HAVE THIS DSEASE. I DO HAVE COPD AND DIABETES ALSO RHEUMATOID ARTHRITIS AND CAN UNDERSTAND DEPRESSION AND PAIN THAT OUR ILLNESSES CAN CAUSE.I'M SURE YOUR SITE WILL BE A GREAT HELP TO YOUR FELLOW SUFFERERS AND I WISH YOU WELL, MY FRIEND.MAY GOD BLESS YOU. |
| Name: | Sizcat |
| Homepage URL: | http://www.wtv-zone.com/sizcat/index.html |
| Comments: | April you have made a wonderful site full of info and written from the heart. I am very sorry for your illness but I am glad that you are sharing it with others. You never know who your story may touch. Well done. You will be in my prayers.
Hugs, Siz |
| Name: | Anne |
| E-mail address: | Anastasia10@webtv.net |
| Homepage URL: | http://wtv-zone.com/Anastasia/ReflectionsOfAnne.html |
| Comments: | Dear April: Your story was so moving and my heart goes out to you...God Bless You, My Friend. Love, Anne |
| Name: | Janea aka Sis |
| E-mail address: | firelace38@yahoo.com |
| Homepage URL: | http://firelace.250free.com/images.html |
| Comments: | Oh sis, This is just great! I know how hard it has been for you to build this website. I think it is a very kind thing for you to do to help others understand this disease you are dealing with. And for the support of those who have it also. It has turned out beautifully. I am so proud of you for doing this one. And the layout is great! I can't wait to see the links added! :) Good job my Spirit Sister, ((((Hugs)))) Sis |
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