Thursday, May 2, 2013

Today : :

Today

The same beautiful, shining sun we had yesterday, is shining through my sewing room, and I'm ready to get sewing! I needed to take some personal days this week, but I'm starting to feel better now. On Monday I had an out of town appointment with a new doctor that I had both been looking forward to and was nervous about seeing for a couple of months now. I haven't had any real luck with treating the autoimmune skin problems I struggle with, and was hopeful that this new set of eyes might be able to offer something that would be successful. Well, at my appointment it was first thought that there might be a link to what's been going on with my skin and my gluten intolerance, but they needed to look over my biopsies and pathology reports to be certain. It would be a huge inconvenience to my family if everyone had to go gluten free here at home because of my severe sensitivity, but it was something. A first, possible explanation for this. So while the doctor looked over everything, we left, went shopping, then to lunch, and when I heard back, they came with something different and new and rare and with not many options for treatment, especially where we live. I had been dealing pretty well with everything, for the most part, for a while now, which is why I haven't felt the need to share anything here since the last time. But this appointment just took so much out of me. It really made me sad and I just feel like it had set me back in a lot of ways. I'm going to begin what they recommended for treatment right away, yesterday I had a new appointment, and I have some additional testing to get through over the next several weeks yet. But if/when everything turns out okay I really need to do all I can to accept these things that I can't control as part of who I am now. And more importantly I have to be better to myself than I have been in a long time, beginning right now. As woman and as mothers and because I know many of you have your own autoimmune diseases and personal struggles from your willingness to share with me over the past few years, I know you'll understand what I mean by that.

Blessings and warmth to all of you, today and always!
Maureen

81 comments:

  1. I hope the new treatment helps you mentally and physically. Remember there will always be new options, drugs, and treatments so never give up hope. Medical scientific research is a wonderful thing! Stressing out (as I'm sure you have been telling yourself) only makes your autoimmune complications worse...so maybe treat yourself to some shopping, time with your kids, and/or some gluten-free bakery goods to take your mind off things. Now if I could only listen to my own advice sometimes... :)

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  2. I haven't been following you long but thank you for sharing this. I've got some of those rare and wonderful autoimmune conditions also. Mine are neurological. Fun, fun aren't they?

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  3. I noticed you were quiet this past week.. Sending love and positives thoughts you way <3

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  4. I don't know what kind of auto immune diseases you are coping with but I have several and have had them for 25 years now - if you need to "talk" feel free in contacting me. I have only been following your for a short time now so I am not up on what you are dealing with - there are so many diseases in this catagory

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  5. Maureen,
    My heart is reaching out to you right now. I recently had a very difficult 2 months with my own unknown auto-immune condition... having tests, getting no answers, and just struggling through it all. I know exactly what you mean when you say you have to do better to yourself. I came to that same conclusion about a month ago. My prayers are with you.

    Carrie Morley

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  6. I hope your new treatment helps. Usually we don't take care enough of ourselves - I hope you do and can be not stressed, relax, enjoy what ever makes you happy! You are in my thoughts and I send you sunny hugs! x Teje

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  7. My heart goes out to you. I have a friend whose rheumatoid arthritis medicine causes the same symptoms you are having. She has to live with it, too or her mobility is restricted and comfort compromised. It is not fair and I am sorry you suffer.

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  8. Meh, that sucks. I'd hoped things were a lot better these days. Anyway, go and treat yourself well. Please. You deserve to focus on yourself and do what's good for you. We forget that all too easily. Take care, xx

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  10. Oh Maureen - I hope things will be better for you. My husband has been dealing with skin problems his whole life. No one ever knew what it was. As an older adult 58, everything is getting worse. His skin has been getting worse over the past few years, his gout is getting worse and we have just recently found out he has celiac disease. It seems the more gluten free he eats almost the worse he feels. On top of his muscle disease, I can see it really wears on him. I don't know what they told you but you know you have your friends here to talk to. Our daughter has some sort of autoimmune arthritis which has as yet been truly diagnosed. They are not sure what is causing it.

    Take care!!!

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    1. What I meant about him feeling worse the more gluten free because he seems now to be lactose intolerance also, which I guess goes along with celiac disease. It is great that you have the support you have here on your blog because there is so much info out there that is so confusing. My husband went to his doctor, who threw a bunch of photocopies to him and said if you have any questions, call me and left the rest up to us.

      My heart goes out to you because it can all be so confusing.

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  11. Maureen, blessings to you as you struggle to find what works and helps. I too have autoimmune issues and frustrating is an understatement. I am reworking and adjusting meds here and it can be discouraging. Hang in there.

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  12. My heart goes out to you Maureen! I and several family members are gluten free and I also struggle with food allergies as well as other autoimmune issues. The bottom line for me is that all of these things are related to inflammation and a poor diet (I ate horribly as a teen and young adult), so -for me - it is all about doing what is best for ME which happens to be eating extremely healthy and being totally fanatical about it. That is when I feel the best physically.
    It's difficult, expensive and at times frustrating (especially when I have naysayers in the fam who think I've gone off the deep end and say so. But, hang in there, it IS worth doing what you need to do to get yourself healthy.
    Blessings!
    Shirley

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  13. So very sorry to hear you are struggling at the moment.

    We all try to make our little place in blog land a happy one, I think we sometimes forget that 'life' is happening in the background to everyone and it isn't always rosy.
    Sometimes it helps to share, sending you very best wishes and I hope the tests give you some answers xxx

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  14. Maureen,
    I highly recommend going on a gluten free or amylose free diet. In my experience over the last 2 years, diet is a significant factor in how you feel on a daily basis with any disease. Briefly, in a nutshell, gluten cause inflammation in the body. You may benefit from eliminating it from your diet. Take it one day at a time.

    Lisa

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  15. Thank you for sharing what is going on in your life, as painful as it is. I too have many auto immune deficiencies. I go through a lot as well. I'm in the hospital all the time. 19 days in January alone. It will get better for all of us. Today is a new day and we just need to take them one at a time. Enjoy the sunshine, love your family and have a great day.

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  16. Sending you some hugs. It's rough, but at least it seems like you have a doctor who is willing to take the time with you. Here's hoping that whatever new treatment they find works!

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  17. Wishing you strength and courage as you face this challenge. Give yourself permission to REST once in awhile. Hugs!

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  18. If it helps, my very-close aunt has an auto-immune disorder as well. The doctors finally linked it to celiacs disease. Since she has given up gluten completely, her "flare-ups" have almost completely ceased.

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  19. Praying for you and for your family as you begin this new treatment and make adjustments.

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  20. It's hard to talk about a chronic illness, especially when you're a person that takes care of everyone else all the time. You don't want to sound like a whiner, and you don't want people to feel sorry for you...but, doggone it, once in a while it DOES overwhelm you, and it's totally okay to announce it. "Hey, I feel like poo on toast, and I'm tired of feeling that way!" It doesn't mean that tomorrow you won't be right back, solving other people's problems, and taking care of their needs, handing out sympathy for their hurts and sorrows, and hardly sparing your own troubles a thought. It's healthy to let off a little steam, and it's important to let those other people have a chance to try and make YOU feel better once in a while, too! (Even if it means your nails get painted bright yellow, and you have to wear a dozen Hello Kitty clips in your hair after your daughter is finished giving mama a "spa day" to make her feel better.) I will be pulling for things to improve for you, and I know that, whatever comes, you will get through it with your usual grace and humor, and the support and love of your dear ones. God Bless!

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  21. Maureen, I understand. I have some autoimmune issues that have been undiagnosed for nearly a year now, and type 1 diabetes for the past 21 yrs. With everything that's gone on, stress-wise, I have lost consciousness about 7-8 times overnight due to dangerous low blood sugars (lowest ever recorded was 12 and you know what normal blood sugars ought to be). I feel your frustration, pain, and worry. And I feel your disappointment, fear, and concern for those around you while you struggle. {{HUGS}}

    Fawn

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  22. Oh Maureen. I cried when I read this. I'm longing for a life lived whole heartedly, free from guilt and pressure, right in the moment, allowing ourselves to be all that we are. And I hope the same for you too.
    Much love to you from over here. Hope I can have a cuppa with you one day. xxx

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  23. I am sending prayers for you and your family..I know how bad health can effect so many things in so many ways...as women we always take care of everyone and everything else first and often overlook ourselves... Please be good to yourself...hugs

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  24. I can empathize with you as I have had Systemic Lupus Erythematosus and Sjogren's Syndrome since I was about 13 years old, and now some Fibromyalgia too. Life can and has been a struggle for sure, but I make the best of it and cherish every day I wake. I know you come through this as the same loving, caring, generous person you have always been. Hang in there and know that we are all rooting for you, sending our best and most heartfelt thoughts and energies your way.

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  25. I'm very sorry that you have to go through this. I myself know how difficult it is when you have something that makes you struggle and other people might not even understand, that's when you start to feel bad for needing to explain it over again and again on top of already feeling bad and it makes you feel worse. I've not only got asthma but pretty much all the cross allergies you can get. And a lot of them have to do with food. So that is a daily struggle that I have luckily managed to handle pretty well in the last 20 years. I'm 31 myself now and have gotten to a point where I KNOW that, my skin might never be perfect and I may never be able to eat or do certain things and may always be limited in certain ways, BUT there's always a gift that you have. Look at all the amazing things you sew, you are such a crafty and talented person and there are people who love you for that, people you inspire daily and then most importantly, there is your family, the people that you love and that love you back and support you, no matter what. I know there's days when everything is tough and things seem like they might not be looking up again, and then there's the self doubt, the anger and the fear. But please, don't give up, ok? There will be better times again, and I've realized that at some point, when you realize there's nothing you can change about it, you just learn to live with it and it gets easier.

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  26. I had a similar day yesterday, and now I feel less alone. I hope you are feeling better.

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  27. Having gone through something similar with my mom, I understand how tough it can be.

    Sending you hugs and keeping you in my thoughts and prayers.

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  28. Hello!
    I just wanted to let you know that I deal with thyroid, hormonal and pre-diabetes issues. I was also shocked when I found out about it! I found that I had to do a lot of personal reading- esp. as I am interested in holistic, natural ways of healing.
    I wanted to let you know about the one book that I felt really helped me (and I have read A LOT of books on these subjects!) It is by a naturopathic doctor, who is also hypothyroid and dealing with hormone issues - Natasha Turner . The book that I read is called the Hormone Diet. I don't feel like the title really does the book justice as I don't even feel like it is a diet book at all. I found it very informative about herbs and how inter-related all of our hormones actually are- and how SPECIFICALLY to use the herbs and vitamins to help alleviate problems! I think it has become quite a best seller, and there are a few other editions of the book now, but I found it AMAZINGLY helpful- in fact I refer to it all the time. I also had a lot of helpful information from some Yahoo forums- there are so many other people looking for answers too!
    I wish you luck in searching out healthy solutions- it IS possible!
    (also I love your blog!)

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  29. So courageous to share what's going on with you ~ I appreciate it so much. I struggle with depression ~ not something that can be seen and sometimes not very understandable.
    Keeping you in my thoughts today.
    elsa

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  30. Getting through the initial diagnosis and medication is a little rough. I have psoriatic arthritis and fibromyalgia, but the good news is after about a year I started feeling better and better. Still have some pain, but I just deal with it. Now I'm off some of the meds. I'm 65 and relieved that there is light at the end of the tunnel! I hoping for you that you have success in your treatments and a positive attitude certainly does help. You can't keep a good woman down. Chin up!

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  31. Sending prayers your way. I don't have an autoimmune disease, but my 13 year old son does with type 1 diabetes and we have many ups and downs. Take care of and be easy on yourself!

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  32. Thinking of you and sending my "most positive vibes"! It is so amazing that so many of us "sewing friends" have common issues. I know that sometimes it becomes overwhelming dealing with it all, but I think we all seem to understand each other. How do you stay on task - that is my biggest problem. Any suggestions from anyone? Again - love your blog - would love to talk over the back fence! Just too many states away!!!!

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  33. There is so much joy and beauty in your creativity. I know you will continue to make your world as beautiful as you are, autoimmune disease or not.

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  34. Forgot to add - you have no idea how inspiring you are!!

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  35. My thoughts and prayers are with you and your family, Maureen. I have my own struggles with an autoimmune disease and it's definitely not fun. Your family loves you no matter what, that's what is most important.

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  36. Yes, the best step & the hardest is taking care of yourself, slowing down because that is so difficult to do especially with children. Thankfully my youngest was 12 when I was diagnosed with pulmonary sarcoidosis. And, I understand that let down feeling of seeing a new doctor and hoping for new/different diagnosis/help. My son took me to Vanderbilt Hospital Sarcoid Clinic last fall and I was so in hopes of being able to try something other than steroids to breathe but after multiple breathing tests, blood tests, biopsy review - nothing can be done other than what I am doing now. However, Dr. Butka was so sympathetic to me and that really touched my heart. Just do the best you can do and don't try to live up to anyone's standards. Take care and you can email me any time you need to. :)

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  37. I'm so sorry you are going through this difficult time. You are right, we have all been there; if not it is just a matter of time until we will have to face something difficult. It is just part of life. From the quote on your tablet in the picture I am hopeful you have faith on your side. Sometimes we have to "give up" and put ourselves in God's hands. You may not feel blessed right now but accept this time as a gift and see what God can make of it.
    Pat Hathaway

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  38. I used to work for a specialty pharmacy provider that dispensed injectable/infusible drugs for autoimmune diseases. I have some semblance of an idea of what you're going through. Hugs. Staying close with your doctor and being compliant on treatment makes all the difference. It's not easy, but it will become routine.

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  39. I'd like to repeat what Alison said in the first comment. I work at a university hospital, cancer center and medical school. This is really an awesome time in research. You get to feel sorry for yourself and learn to cope right now but don't ever give up hope. Anything can happen. You never know what's around the next corner. You never know.

    And let me tell you - every once in a while doctors are wrong. Be your own best advocate. There was a time when we didn't have all this information available and we just sat there and nodded to the doctor and did whatever he said. It's a different world now.

    You have my prayers because I believe in God. But I also believe in science. They are both happening every day.

    Don't forget to work on keeping your spirits up. Lots of us enjoy you and need to hear every idea and creation you have. You are a joy to us.



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  40. Thank you for sharing your struggles with your auto-immune skin problems. As someone who has both psoriatic arthritis & alopecia (both auto-immune diseases), I know how difficult day-to-day can be. As I have gotten older, I have learned to adapt/live with my symptoms, but my symptoms have also gotten worse as I have aged.

    Knowing that there are other people out there sharing the same struggles helps me feel less alone, especially because auto-immune diseases can be a challenge for most people, who do not suffer from them, to understand.

    I wish that there was more research being done to understand auto-immune diseases.

    I do know that acupuncture has helped with my pain, flare-ups, stress and other symptoms. After having tried many prescriptions/treatments, and having suffered some horrible side effects, I have been trying to find more natural alternative treatments (acupuncture, yoga, etc).

    Please take care of yourself, and thank you again for being so open with your struggles. It really does help all of us to know we are not alone.

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  41. I am so sorry that you have to deal with so much along with everyday normal things as a mother, wife and business owner. You always seem so strong, happy and full of life. My cousin is recently dealing with an autoimmune skin problem and can't seem to find a cure for it yet either. It just never seems fair that one person has to deal with so many things. I wish you the very best and hopefully some good answers and healing for your body.

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  42. Maureen,
    As a fellow female, I can tell you that we all too often put others before ourselves. I have learned that if my "bucket" is empty, I will have nothing to give. I, too am struggling with health issues and have to navigate my way around them. Thankfully, my husband supports me enough to make whatever changes are necessary in our diet to support me in my quest for healthier living. I'm SURE your family,while maybe initially disappointed in the loss of favorite foods, would be all to happy to support you in whatever your needs are. And if it's not reasonable for them to make changes to accomodate you, I'm sure you'll do whatever it takes to take care of yourself because YOU ARE WORTH IT! If there's anything I can do to encourage or support you, please let me know. :) You can find me at: (www.makingmyownsunshineblog.wordpress.com)

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  43. Dear, sweet Maureen,
    My heart goes out to you in finding out that you are going through a hard to diagnose condition. I have been dealing with a daughter who has been sick for the last 4 years, starting with several viruses that then compromised her immune system, allowing yeast to flourish in her intestines, causing what they call "leaky gut syndrome" (sounds yucky!!), and that in turn caused her to develop allergies to gluten (we eat lots of rice now!!), eggs, and dairy. And even with a specialized diet for 4 months to try and kill the yeast, and about 4 months since off that diet but still having the food allergies she is not feeling well. I will put you in my prayers every day as I pray for her that the doctors will be able to find a way to help you.
    Personally, I found that 3 years of traditional doctors she received no help, but through God's direction I found my cousin, who is a nurse practioner, and she is in practice with a doctor who specializes in treating people who have problems that traditional medicine hasn't been able to help. At least through tests that my cousin ordered we got a diagnosis and direction!! Feel free to contact me for their practice's number if you get no help from your doctors. Maybe they could give you the name of doctors in your area who work in their line of medicine.
    God's blessing to you!!!! I hope you find answers and treatment that will help. Big hugs!! Helen in Healdsburg

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  44. Dear Maureen,
    Email me any time. My thoughts are with you. I wish that I could do something, but know that I can't...which is very frustrating. You are on my mind. XXX Sondra

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  46. You and your family are in my thoughts and prayers.

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  47. Maureen, I pray they find something to help you and don't get disheartened. It took them several years to figure out everything that was wrong with me and they're still working on it! LOL! When it involves your immune system or endocrine system it is always changing. I was finally stabilized and have meds that help me and keep me pain free and functioning. Don't give up hope! But yes, be good to yourself in every way possible. Take care sweetie.

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  48. Oh I'm sorry to hear that (((((HUGS)))))

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  49. Hi Maureen,
    I also suffer from an autoimmune disease......It tooks me YEARS to find out the things that caused problems for me and honestly I had to work it out for myself......You may have looked into this already BUT have you checked into things such as food additives and chemicals in your environment such as cleaners? I cannot eat MSG at all and dairy foods turned out to be a HUGE problem for me and some cleaners make me feel woeful...Honestly I went to SO many doctors and had all the tests under the sun and I nearly died from it all, that's how bad it was BUT...once I worked out that it was what is IN the foods I was eating (mainly MSG, which has a number 621 here in Aus) and also dairy that was making me ill, things changed for me! I wish you all the best in your search for answers and if you ever need anyone to chat to about it all, please DO contact me as I have a pretty good idea of what you are going through!
    Christine
    ChrisW Designs

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  50. You are beautiful and talented, keep your head up as best you can. Some days we just have to vent, you have that right. Thanks for all you do! Hugs to you, Chris

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  51. I love you just the way you are. Sending lots of love and healing energy your way...Fingers crossed the new treatment works.
    xox, Jeannie D

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  52. Hi Maureen,
    I just wanted to tell you how much I appreciate all that you do to keep us inspired. Thank you for sharing so much of yourself and your darling family. I will tell you a secret. When I feel down or depressed, I can pull up your blog and I ALWAYS feel better.Whether it is a new post or an older post it always cheers me up. I don't tell you this to put pressure on you that you have to always be there, but to tell you you are appreciated. I know there are alot of people out there that feel the same as I do. I know your family loves you deeply. And you are a great mom, wife, friend. Feel better soon. You are right, the sun is starting to shine. It's time for SPRING!! Take time for yourself and revel in the love of your family. That feeling of being appreciated and needed is very healing in itself. Sending warmthoughts to you and your family!
    Jan

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  53. Based on what I've seen of your blog, you always seem so busy and on top of things that I am constantly amazed at how you do it. We seem to be of a similar age and have a similar family set-up as me and my life is nowhere near as organised? full? interesting? as yours. To know that you've been battling with your health at the same time makes me think you must be a wonder woman.

    I have an autoimmune disease, too. It affects my kidneys and it flared up recently, giving me a big health scare. It made me realise I have to take better care of myself, although I'm not really sure how to go about doing that.

    Good luck getting everything under control. You have many fans her on the Internet, but don't feel that you have to keep us happy at the cost of your health.

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  54. I just read this and your previous post on all you have been dealing with and just want to say you are a strong, inspirational and powerful woman who has accomplished so much in just thirty years. Remember that on your bad days and remember always to be kind to yourself.. Thank you for sharing. My sister in law has a host of autoimmune issues, lupus, chronic fatigue, and I have seen first hand how things can get on top of you but I have also seen how through and maybe in spite of her struggles she seeks out the value of life and achieves. I see this in you and saw it before I read about your struggles. Be proud that they do not define you and that you are much more than your illness. Blessings to you and yours.

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  55. You are just so sweet and creative. I love reading your blog. You must take care of yourself. You are the center of your family's universe. Mama always is. Just remember we are all here for you. Keeping you in my prayers.

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  56. I hope your new doctor can find you the right treatment so you can get better soon:)

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  57. Best wishes and hope the new treatment will help soon!
    Take care!

    Hugs,
    Tatyana

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  58. My blessings to you and your family as you all try to deal with this.

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  59. Praying for you! I have autoimmune arthritis - psoriatic (which includes psoriasis for me), fibromyalgia, and had breast cancer three years ago. I definitely know where you're at and I feel so badly for you! The waiting for tests and results is the absolute hardest part, IMO. May you get the answers you need soon! {{ HUGS }}

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  60. Dear Maureen, Try to see the positive side of things as you have a supportive husband and ever day your beautiful children will bring smiles to your face. These difficult times,especially hearing news that can be upsetting are meant to make us stronger. You will find solutions and they might be hard to,follow but this too will make you stronger. Going gluten free is not that difficult but there is a learning curve. I found the internet a great source of tips but it takes time to read all this You must allow yourself time. This is a huge time of change. Your kids will be more resilient and helpful than you think - kids love challenges. My oldest was 17 when I found out I had an autoimmune disease and she is now 35 and has suffered herself for 7 years. She is able to work and care for her 6 yr old but has yet to find a solution that relieves all her symptoms but going gluten free has helped. Stay strong, have faith and remember there are many folks holding you close at heart.

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  61. I'm just getting around to checking my blog posts (a nasty flu bug set me back pretty hard yesterday), but I was sorry I had missed this one. It's so hard when things don't just go away like it seems they should. I hope that the new treatments will help, and I'm thankful that you have a supportive family who will do whatever is needed to take care of you. I'm praying for you.

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  62. I'm sorry Maureen. I know how difficult it is to accept what you can't control. I also know how hard it is to put yourself first, but by taking care of yourself, you'll be better able to take care of your family. I have been and will continue to pray for you and your family. XO

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  63. The fabric is beautiful. Would look great in a bedroom. Maybe end of the bed and some pillows.

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  64. Sending you love and hugs . Look after yourself , Maureen. Best of luck with your treatment . Thinking of you x

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  65. Hi Maureen! I've been enjoying your beautiful blog for a little while. I am an RN and I used to work in a outpatient IV clinic with Rheumatology patients. Everyone's body has it's own "magic combination" - while you are discovering yours, please do take good care of yourself by getting plenty of rest, listening to your body and pacing yourself, letting people know what you need and asking for help, and laughing everyday :) Sounds like you have great family & friend support - make sure that includes a close confidant or two (maybe one is your husband) with whom you can let it all out - the good, the bad, the ugly - release all of that energy so the love always has room to flow. Here's to finding the keys to unlock your code.

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  66. I'm sorry to read about your health struggles. I've been following your blog for about six months now. I so enjoy the creative ideas you share, and your always positive tone. I genuinely hope you are able to conquer your newest health challenge. I thankfully haven't had to deal with any serious health issues yet, but I have several friends dealing with auto-immune issues, and I know it is a daily struggle. Allow yourself rest/downtime, and thank you for sharing!

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  67. Take care of yourself Maureen. You'll get there in time. x

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  68. These are such happy, pretty fabrics - just right for summer.

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  69. I follow Bloomerie on Facebook

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  70. I've shared this giveaway on Facebook.

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  71. You are a truly amazing person to be dealing with your health but at the same time so creative and active, wish you better health.

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  72. Sending warm thoughts and care from afar. You handle your health difficulties with admirable grace.

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  73. Several years ago, I went through many screenings, tests, and biopsies for an autoimmune skin disorder. After a lot of trial and error, my condition was diagnosed and is managed with meds and some life-style changes. I rarely have flare ups. I hope your medical professionals will help you to achieve similar results! You'll be in my prayers.

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  75. Hugs to you today, even though I am so behind in my blog reading it is ridiculous. :) I've always admired your attitude and openness, and your creative vigor in spite of the struggles. I hope this new doctor is a pathway to more understanding, energy and feeling good for you!

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