I am blessed.
Maybe not what you would expect for me to say when I am writing about autoimmunes. But first and foremost, I want to say – I am blessed. There are days I have to remind myself that again and again. And again. Days, like the past three weeks, where I can’t even get out of bed, or my sweet husband has to help me. Even on the bad days, I tell myself this could be worse. It could be cancer or any other number of terminal diseases. It could always be worse. That said, I want to share what it’s like Living with AutoImmune Diseases.
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About four years ago, my son and I were finishing up a flip house. It would become the last flip house where he and I did most of the work ourselves. A few days prior to us finishing the house, I felt like I was coming down with the flu. I was achy and tired and lethargic, and just wanted to crawl up and go to sleep. It was the middle of July…a strange time to get the flu, but that’s just what I thought I was coming down with. I pushed through and we finished the staging and got the house on the market in a record 28 days from closing to completion.
The day we finished, I literally went to bed – treating myself with typical over-the-counter flu products. Three weeks, later, I was no better. In fact, I was worse. It was time for a doctor visit. Fast forward about two years later and fourteen doctors and specialists who continually told me “I was fine.” Some even suggested it was all in my head and tried to prescribe anti-depression drugs to me. I had lost half my hair, including my eyebrows and eyelashes, my skin looked like a crocodile most of the time, my throat was swollen and sore all of the time and I was gaining weight at an alarming rate. I had bouts of insomnia followed by bouts of sleeping non-stop… and on and on. Inside, I literally felt like I was dying.
I went from something close to Super Woman 2.0 (people always told me they were amazed at what I could accomplish in a day) to barely being able to walk on the bad days. And still, the doctors insisted I was fine, even though there were months I made weekly ER visits with extremely high blood pressure and an erratic heart beat. At that point, I was starting to consider the anti-depressants, because I was truly growing more and more depressed. At this point, I knew my blog, which I had worked so hard to build – had to be put on hold while I was trying to find out what was wrong with me. So, I took a hiatus with no idea how long I would be gone. And I started reading and studying. I knew in my heart, that I was the key to finding out what was wrong with me. And my husband, who had been so patient and loving to me, became my patient advocate.
My 17th doctor came back into the exam room after a thorough examination and lots and lots of blood work, and finally told me what I had self-diagnosed myself with all along. I had Hypothyroidism and Hashimoto’s. We started a series of medicines, and I started a strict diet of no carbs/low carbs, no sugar and no dairy. After a few weeks, I started slowly feeling better. I was elated. I wasn’t back to my old self, but I felt a little bit of the old Barb come back. Then about 3 months later…I crashed. Again. It’s called the “Synthroid Crash,” from what I have been told by others in some online support groups I am in. Long story short, my body and thyroid was so depleted it sucked up the Synthroid like a sponge, but after a while – it wasn’t enough. It needed more. And the Synthroid alone could not give me that.
The problem with Autoimmunes is that doctors know very little about them. Even though millions of people have been diagnosed with them, and there are possibly millions more not diagnosed yet or misdiagnosed, the medical field is still in the dark about how to treat these diseases. The reason that most are misdiagnosed for years, or in my case repeatedly told that I am “fine” – is because all people are different, yet the medical field uses the same standard of ranges when testing. Even now, I seem to be in a constant battle with my doctor to make him understand we need to switch protocol or find something else. A few months ago, I was diagnosed with a third autoimmune – Stage 3 Adrenal Fatigue. I am pretty sure I also have Sjogren’s Disease but at this point what does one more matter. 🙂
I am about at my whit’s end with traditional doctors. My friend’s have encouraged me for months to see a Naturopath and I think I am finally there. I just don’t see that traditional medicine is helping me at all. This is not to say traditional doctor’s aren’t helpful for some. I just feel I have stepped beyond their capabilities at this time.
Why did I write this post?
NOT for sympathy. Please know that first and foremost. I am writing this because I know very well that some of you reading this right now are feeling some of the same symptoms I did, and still do today. You’re tired. More tired than you have ever felt. You ache, and it’s not the flu. You have lost hair, and your skin is itchy and dry. You have Brain Fog. There are days you can’t put words together because you’re so foggy and tired.
Outside, you look normal. Well, except for the hair loss and having to draw your eyebrows and wear false eyelashes. But, you don’t “look” sick. You don’t have a limp or a cast on your leg, or you’re not in a wheelchair. You look like any other “healthy” person. But, inside, I know what’s going on. I know how weak and tired and confused you are. I know.
I also know you are not alone. What you are feeling is NOT in your head. It’s your body attacking itself from the inside. Don’t give up. Find a doctor who will listen to you and treat you – even if you have to see every doctor in the country. My shortest visit to an endocrinologist lasted less than 10 minutes. He arrogantly walked in and stated… “Hi I’m Doctor XYZ, I see you have been to lots of other doctors before me…so I am not sure what you think I am going to tell you that you have not already been told.” I got up and started walking out. He asked, “where are you going?” I stopped in the doorway, looked him straight in the eye and said, “I’m going to find another doctor who doesn’t disrespect me before you even get a chance to listen to me. I’m going to find another doctor who gives a shit, or at least pretends that he does,” (sorry for the profanity – it was needed!)
I would love to tell you am I healed or I am at least in a better place. I’m not. These past few weeks have been some of the roughest on me that I have had since I started this journey. But, I won’t let it beat me.
Because…I am blessed.
I have an amazing husband who wants to take me to France this Spring for our 25th Anniversary. I have an equally amazing son who deals everyday with PTSD from his deployments to Iraq – that needs me. I have three beautiful grandchildren who don’t understand why Grammy can’t take them to the park, but I want to keep trying so I can. I have a sweet Mama who is still trying to deal with the loss of her husband and my Daddy. I have too much to live for. And, I am one determined woman, too. So if you’re in my boat, I am praying for you. It’s not easy. Just don’t give up. Keep seeking answers and trying to find what works best for you. Remember that what works for me may not work for you, etc. But that doesn’t mean there isn’t somebody and something you can do to make your life better. It’s out there.
DON’T GIVE UP!
If you have an autoimmune, or think you do, I would love to hear from you below.
xxoo, Barb
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” …finding joy in the everyday! “
Thank you for getting this disease out there. I too suffer with this!
View CommentYou’re so welcome. So many women who suffer from this it just boggles me and I always wonder…Why? 🙁 Thanks for stopping by. ~ Barb
View CommentYou make me want to cry. I know others suffer the same way I do, but to hear it (or read it) really brings it home that I’m not alone. Some days I think the fatigue and fog will rule the rest of my life and others I beat it down. Let’s keep smiling together.
View CommentNo you are not alone. I hope I can reach lots of women who can read this and it gives them some encouragement. I love that – “Let’s smile together.” I so agree. Thanks for stopping by. ~Barb
View CommentI have lived with this for 6 years now. I, too, have a wonderful husband who doesn’t complain, loves me unconditionally, and helps/does everything I’m unable to do. My hair is breaking off, my joints ache so terribly I want to(and do)cry. The PAIN. I’m so tired and achy. I take sleeping meds, yet I’m up until 4-6a.m. before I fall asleep. Cleaners and most lotions burn my skin and make me swell. Smells are so intense they make me nauseated…and my mom, before she passed, said I was just fat and lazy. And told my kids I am a faker. WHO WLD CHOOSE THIS??? My children don’t include me in anything anymore. My mom passed away thinking I was a disgusting person. I’ve always been a hard worker. A go-getter. A problem solver. I actually have a genius IQ of 150. Now I can’t put 5 words together. It is aggravating beyond words (that I can’t remember,lol)&very embarrassing. I no longer leave the house. I feel embarrassed and ashamed. I feel ugly and deal with feelings of self loathing and disgust. I wish the people I love most in this word didn’t think I’m unworthy. Faking. Etc. Thanks for the post, Barb. I hope you enjoy NYC. And ty for sharing your story.
View CommentOh Debbie – I wish you were here so I could give you a HUGE hug and tell you I CARE and I UNDERSTAND. There are so, so many of us out here and we all feel the same way, so you are not alone. I am so sorry your mother and your family thought that of you. I am so lucky I have an understanding husband and son and mama. I don’t think I could face them if they didn’t. You’re so, so right. NO ONE would choose this kind of lifestyle. The one thing I say almost every day is I want my old life back. Please do not feel ashamed and embarrassed about yourself. You did NOT do this to yourself. Take it one day at a time. I started using Organix Moroccan Oil Shampoo and Condition (recommended by a friend) and taking Biotin and it helped my hair a lot. (It isn’t cheap but it’s worth it) Please hang in there. My email is barbgarrettnc@yahoo.com. Please feel free to write me any time you need someone to talk to. xxoo, Barb
View CommentDear Barbara How wonderful to receive my first newsletter and what timing. I don’t have the severity of your disease but I do experience a wax and wan of these issues. God bless you for sharing your uplifting crafts let alone the search for answers. As my son began with deformed ureters which caused kidney failure. Then a brain tumor which caused damage to pituitary . I lost him here on earth but I know he no longer suffers. My point is you learn to trust your instinct. It is sad when visiting a physician you need to be ready to fight for your rights and demand answers. His last year’s (my son Garry) were spent crippled up UN able to walk or even sit up from a very rare form of scleroderma . In researching everything I could get my hands on when I seen things happening while being given larger doses of medications. In your letter discussing what you eat and casultys of medications is a blessing for your readers who are facing the battle of trial and error. You have inspired them in not giving up , smile and prep for battle. You have touched on the fact of the more you know the less power it can have. Thank you looking forward to making that Valentine’s wreath. OMG!!! Love it.
View CommentHi Barbara – I have no words accept I am so, so sorry you lost your son. What a sad and difficult life he had, but I know you were beyond blessed to have him here on Earth with you while you did. Yes, instinct is everything and the doctors often make us doubt our instincts and what our bodies are telling us. I am a true advocate in researching as much as you can so you meet the doctors with as much knowledge as you can. They don’t like it very much, but oh well. Thank you for your kind words and for stopping by. xxoo, Barb
View CommentBarb,
Thank you for sharing. I also have the same thyroid condition you gave. I thought I had the flu also. It is my understanding that it is one of the most missed conditions in women. Two years ago I was diagnosed with MS.
I did not get help or an accurate diagnosis until I went to Cleveland Clinic. It is an amazing place. Everyone there without exception is caring and will dig deep to get answers for you. I now have a lot of mobility problems. The left side of my body has lots of weakness. I, too, am blessed with a loving husband and family that cares. All my children are out of state, all grown. I had to take a medical disability retirement.
Yet, a look at every day as a blessing. My middle daughter organized a walk to honor me and support MS research. In November she helped to raise almost $4,000 for the National MS Society. Some days my struggles are many but I am thankful God gives me strength. Life is very different for me. I do believe God is teaching me much about perserving and to live a life where He is the center.
I hope your blog will encourage others to see the positive in every situation. You are not alone.
View CommentOh Vickie…see your story makes me feel even more blessed. I am so sorry your diagnosis was MS. I have heard very good things about the Cleveland Clinic, too. I may look into that. Thanks for sharing your story with me, and I hope its okay if I pray for you. xxoo, Barb
View CommentWow, what a story! I am fairly certain that I also have hypothyroidism but, after seeing 3 endocrinologists and many blood tests later, all was negative. I’m wondering what finally gave you the diagnosis. Yes, there are many of us out there! Thanks for sharing your story!
View CommentJudy – all I know is I finally found a doctor, or thought I did at least, that looked beyond the basic guideline numbers. My inflammation indicator was off the chart and I guess that got him suspicious. Like I said, keep seeing different doctors until you get some answers. Its infuriating that millions of people suffer from these diseases and we are looked upon as psychotic because our numbers don’t match with their numbers. All people are different. Do lots of reading. Hang in there…praying for you. xxoo, Barb
View CommentThank you for explaining this disease. I think we have a family member with autoimmune disease and I’m going to encourage them to read your blog. God bless and praying you feel better soon.
View CommentPlease do. Many people think “it’s just the flu” or something that lingers. I am sorry I did not push to be tested and treated sooner. Hope they can get some help. Thanks for stopping by. ~Barb
View CommentBarb, I am that one. Maybe there are many others, but I am one. I am in my sixties, I have two lung diseases (immune-related) and prednisone has pretty much kicked my ass. I’ve had several joint replacements. I got hearing aids this week, so at least my hearing is somewhat better, but still need eye surgery for the cataracts (two different kinds in each eye, one for old age and one from the prednisone). I am trying to stay strong, because I don’t want my mother to have to go to my funeral. Reading that little saying about finding strength when you’re weak, really touched me. In fact, I cried like a baby.
Barb, adrenal insufficiency is a terrible and dangerous condition and it’s really hard t get doctors to diagnose it, so I want to put you in touch with a facebook friend of mine who understands it better than I do (he has it) so he can give you some guidance. He has had some of the conditions that I had, plus more, and he is very much of a survivor and a person who studies and gains a lot of knowledge, his name is Joe. Please contact me on facebook or by email.
By the way, I was told recently that if you’ve had your immune levels tested, and your IGE level is low, they can give that to you via I.V. and that it is very helpful. Unfortunately, I looked at my test results online and couldn’t tell which of mine was the IGE, so guess I’d better ask the doc next time I go, LOL!
View CommentOh goodness, I am so sorry about the damage the steroids have done. My sweet mama takes them for her sciatica but only in small bouts because they scare us so. She also had to have hearing aids and cataract surgery, but she is also 82-years old. I also feel like my mama has much of the same things I do but she is undiagnosed. Her mama, my grandmother, died of Lupus so its to be expected we inherited this mess. Hang in there, and maybe you can email me your friend’s address and I will contact him. Always looking for someone with insight. Thanks so much, xxoo, Barb
View CommentKitty- I have adrenal insufficiency and have had complications can you give me the contact information? I am in Alaska and have had a great deal of difficulty
View CommentI am 69 in March and have had Hashimotos disease since I was Forty-six. I live on a farm and was a type A personality. You couldn’t get me to stop. Had a son getting married, was looking after the farm as husband was a locomotive engineer and away a lot.. looking after and cooking for an older aunt, etc. Had all the symptoms you had, except for the hair loss. My husband said if I wasn’t sleeping, or crying, I was saying I am not doing that everyday. It is a terrible feeling. My doctor ordered blood work when I asked for something for energy because I wasn’t going to see fifty-six. That’s when they found it. I also developed osteoarthritis, at about the same time. You will get better, once it is under control. I really ha e never had my stamina back, and as I age, the arthritis gets worse. Have had a new knee and will probably need the other done soon. Otherwise, I have a full life and try not to let it get in the way too much. Glad that you have your diagnosis finally. It is sad that no one thinks of this as the problem. I didn’t even know what your thyroid does. It controls every working part in your body. Good Luck, feel better. It will happen.
View CommentDarlene I knew the body had a thyroid because a friend had thyroid cancer, but that’s about all I knew. Now I know more about thyroids and adrenals than I ever wish I did. Yes, I was the Type A too. Now, I am not sure what “type” I am. LOL Thanks for the encouragement. xxoo, Barb
View CommentMy motto used to be, ” I am too busy to be bored.” I was a teacher, professor, received three college degrees, volunteered for seven organizations and in my free time I was a rock and roll radio DJ. For the last ten years, I scaled back on my volunteer work and became an antique dealer. But about five years ago, I realized that I had to scale back even more. Fatigue was my middle name but no one else knew it. I tried to work through it. My son was diagnosed with a brain tumor about ten years ago. So every time I went to a doctor, their replies were always the same, You are under too much stress.” Four doctors and three years later after two mild strokes—a confirmed diagnosis of lupus. Fast forward to last year. Diagnosis: lupus, fibromyalgia, osteoporosis, and Sjogren’s syndrome. I refuse to give up. Like you, I have always tried to work through my pain and when things get really tough, I decorate, sew or garden. I refer to it as “creative avoidance.” Now, I don’t have that option as much since there are many days that I can hardly walk across the room. This past six months, I have had lots of time on my hands and that’s when I started to read decorating blogs. I am glad that I found your blog. You are a joy and an inspiration. I look forward to your ideas, positivity and honesty. Bless you and thank you.
View CommentOh Nancy I am so sorry and I truly feel what you’re going through. The days when you’re thirsty but you hurt too bad or you’re too tired to get up and get something to drink, right? My grandmother died of Lupus and I have been checked several times, negative each time thank goodness. I know the stress of a high pressure job plus years of a “Leaky Gut” and horrible IBS contributed to this. We just have to keep going and take it one day at a time. I am glad you found The Everyday Home, too. 🙂 xxoo, Barb
View CommentI have lived (struggled) with severe fibromyalgia most of my life. Interestingly, I had a similar experience with an endocrinologist, who literally leaned over his desk and almost ripped my face off when I attempted to explain my symptoms. I only wish I had the guts to let him have it like you did! Following that appointment, he sent a note to my General Practitioner, stating that I was “crazy”. I should add that soon after, I was found to have a very large benign brain tumor! Six weeks in hospital following a six and a half hour brain surgery and almost total paralysis, I remained in rehab for three months, fighting back to learn basic functions again. For years, my saving grace was having a PA who practiced in a rheumatology office. She actually LISTENS when you have an appointment! Imagine that!!! Have you seen a rheumatologist? I feel your pain, truly. I know there are very few good days, but it does sound like you have a strong support system, which is so critical. I wish you only the best with your journey.
View CommentOh my goodness… That is so scary and I wish these so-called doctors could have just a tiny taste of what we go through so they would understand. Are you all better now? I pray so. Yes, I have seen a rheumatologists but it wasn’t really anything he could help me with. So my journey keeps going to find a doctor who can. :-/ Hang in there, I am praying for you. xxoo, Barb
View CommentThank you for your kind words, Barb. While I will never be the same, I’m actually pretty darned close. With the exception of not being able to work or drive anymore, I have a little difficulty walking due to poor balance and have great difficulty with climbing stairs. I am thankful for every minute I have with my family and for each day I’m able to breathe and walk. I feel very blessed. I pray you find answers to your illness and providers who treat you well.
View CommentYou have a great outlook. You are correct. It could be worse. Both of my children were born with CF, a terminal illness. They both have had a double lung transplant which is suppose to buy them an additional 7-10 yrs. They go to area high schools, senior citizens club etc. sharing their stories and discussing the importance of organ donation. I hope you have a great new year.
View CommentGail – yes, I realize it could be worse. I am so sorry your children are going through this. I will pray for them and you, too. xxoo, Barb
View CommentThank you for this most inspiring and uplifting post. I have struggled with my thyroid Graves (autoimmune disease) for 5 years now. I have never felt this miserable in my entire life! I am still trying to adjust my thyroid medication and now I’m dealing with thyroid eye problems. I’ve battled depression as well because it’s such a challenge to deal with it on a day to day basis. Somedays are better than others, but its hard to stay upbeat wondering if you’re ever going to feel 100% again. I use to have so much energy and I’ve always been a very positive, fun person to be around. I wish I NEVER would have chosen the radiation to treat my hyperthyroidism but I guess you can’t live in the past. The last 5 years have made me humble, prayerful, and more empathetic for others. I too have a list of things to be grateful for. I’m grateful you wrote this post. I’m praying for you as well because I know what you are going through and it is not easy. Best of health to you!! P.S. I love the photos and blogs of your home. There’s something about a beautiful home that makes me happy and lifts me up. I too love decorating and gardening. We probably have a lot in common!
View CommentOh Joyce, comments like yours make me want to cry and smile at the same time. I know what you’re going through and more than anything, knowing others are going through the same thing, and NO – we are NOt crazy and it’s not in our minds. Stay strong, and just take it a day at a time. xxoo, Barb
View CommentThank you for opening up about yourself. I love following you on Facebook. Your posts are uplifting, fun and informative! I have fibro, diabetes, chronic fatigue and much more. One day could be good, the next terrible. I’m definitely not the person I used to be. I’m still learning what I can and can’t do daily. Congrats to you on being proactive. We really have to be our own advocate. It’s great you have family that fully support you and understand. That’s really important.
View CommentI’m so sorry you have these issues, too. The hardest part is coming to terms with it mentally because you have so much you want to do and need to do. Praying for you. xxoo, Barb
View CommentGoodness Barb, you have really been through it! I can tell you that natural health has saved us here, time and time again. I can’t recommend it enough! It is a challenge to find the right caregiver, but so worth the effort. I’m pretty sure I’m battling some adrenal fatigue myself, and right now I’m trying to resolve it using essential oils. Also I have a crazy health story about heart health that I keep meaning to write about, you have inspired me to finally get that done. When we share our challenges we all help each other! Sending prayers for your full recovery and continued health! xo, Andrea
View CommentThanks Andrea – my plan is to talk to and interview a few locals (and not so local because I don’t mind driving.) I am even more sure this is the right path because once again, my doctor said he thought it was time for anti-depressants. That was my sign from God. I’m so sorry you are dealing with heart issues at well. I would not wish this on anyone. 🙁 Take care and YES! Write that post. xxoo, Barb
View CommentHi Barb! I can SO relate to your post! I was diagnosed with Lupus in July of 1995. I was staying in the hospital with my son who had lost part of his foot in an accident, and I started feeling TERRIBLE! I can barely get out of the chair I was in so much pain. He didn’t want me to leave him, SO of course I stayed with him the entire time until he was released. I too, felt like I had a case of the flu, and I was totally exhausted. I just assumed it was from the stress of hospital sitting, but it never went away. I was very lucky to have a great doctor, so I made an appointment to see him. My Mom told me to go without ANY makeup, so he could see how bad I looked. That was VERY hard for me! Lol! He took one look at me (and my butterfly rash), and said he wanted to test me for Lupus. I thought he was crazy, but went to a Reumatologist anyway. Of course, he was right, so my journey began. It’s a hard disease to live with sometime, but I also consider myself VERY blessed when I see other people suffering from cancer, etc. I also lost my eyebrows and have hair loss too, but I still feel so blessed to be here with my family everyday. I pray you will feel better, and can find a doctor that can help you. God Bless you! Love your blog too!!!
View CommentHi Rhonda, my grandmother passed away with Lupus and I have all the checkmarks (to include the butterfly rash) but they say I do not. I am grateful I don’t, because I see how my grandmother suffered in her later years. But I know they have made some strides. Isn’t it funny that all of these women who have commented here started out with the “flu.” That in itself is scary isn’t it? Were you told you had the Epstein Barr Virus in your blood, as well? Many of us also have that in common, too. I am so blessed that if I had to be sick, its this. Even on my hard days, I will take this over cancer any time. Take care and God Bless, Barb
View CommentNo Barb, I have never been told I have Epstein Barr thank goodness. I have always been a person who never sits still, and that’s what has been so hard on me the last 4-5 years. I get so frustrated when I give out and can’t do a project as quickly as I used to be able to. I have Fibromyalgia and Neuropathy also, so my pain never goes away. I decided to paint my entire house last June, and boy did I pay for that afterwards! Lol! But it looks great, so that made it worth it. I’m 63 now and can’t do what I used to, but I still try. It just takes me a lot longer to do something than it used to. My dear hubby gets upset with me when I start a new project because he knows how much pain I’m in, but he knows when I decide to do something, there’s nothing he can say that will stop me. Lol! He helps me too, so I am very blessed to have a husband that can do anything.
View CommentOh my, your terrible journey reminds me of mine. In 2006 I thought I had the flu that went on forever. I had a fever every night for over 50 some days and then I stopped counting. I lost 30 lbs and could not do one thing. We had the end of our house torn out (remodeling). Three months and eight doctors later (after having my gallbladder removed) I finally had the correct symptoms for a diagnosis. My family doctor figured it out. I had temporal arthritis which is an auto-immune disease. The artery that feeds the scalp become inflamed. My sed rate was 112 and 12 was normal. My doctor immediately started me on prednisone because blindness is a side effect. I had a biopsy of my temporal artery and started seeing a rheumatologist. I took 60 mgs of prednisone daily and it took I me 1-1/2 years to taper off the horrible stuff. I had many fights with my doctor (just get me off this stuff). I looked like a stuffed toad, I could not sleep and was so jittery. I finally got off the medication. So far (knock on wood) it has not come back. Good health is a blessing from God. I no longer take my health for granted. At the time this happened to me my Mother was very sick in another state and I drove back and forth and stayed 1 month with my parents to care for her. Having extreme remodeling going on in my home along with worrying about my parents I think contributed to my auto immune disease. I am very healthy now and try very hard not to stress over things. God is in control and I am in his hands. I pray for your full recovery.
View CommentHi Rebecca,
View CommentYou know I had my gallbladder removed early on, too and wonder if it was even necessary now. It wasn’t stones, it just was not functioning well. My poor mama has bad sciatic and has to take prednisone and I worry about her taking it. But she can hardly exist without it. I am just tired of arguing with doctors and seeing that look of “I think it’s in your head.” Ugh. I am glad to hear you’re healthy now. It is my hope, as well. Take care, Barb
Having lived with rheumatoid arthritis for almost 20 years, I understand your frustration. Fortunately, I followed a strict diet for two weeks early on that helped the pain and symptoms immensely – for a time. Just last year, I have had to finally go on prescription medications. But, you are right. God is so good and has taught me much through the pain and fatigue. Will be praying for you!!!
View CommentThank you so much, for taking the time to enlighten people about living with an autoimmune disease. You are also very inspirational. I was diagnosed in 2007, and you nailed it on the head as far as our symptoms! I find it quite remarkable, that there are SOoooo many sufferers in the world, who can identify whole heartedly with what you have so eloquently expressed….YET…..most of us are still struggling with finding an MD to REALLY work with us on a decent individualized treatment plan. I am an RN, and I am no longer able to work. I think it is just terrible, how hard it s to find a doctor who is “on board” to REALLY work with patients who have autoimmune diseases. Thanks again, especially for sharing with those who are not familiar with autoimmune diseases. I think we all need to share what we can….’Knowledge is power” right?!? ?
View CommentKim, I am blessed that my job as a blogger allows me to work from home and create my own hours, or I would be at a loss. I sold my real estate firm and I am blessed I did when I did. I just cannot grasp why so many people suffer so horribly and there are so few doctors who know how to treat us, or want to for that matter. I really have been thinking of starting a campaign to my Senators and Congressman to look into this. It’s a travesty in my mind. Thanks for taking the time to comment and share your story too. xxoo, Barb
View CommentI also suffered from an autoimmune disease for ten years. I heard everything that you heard from doctors……so frustrating!! I finally found a specialist in another state who believed me. There was no cure for the disease but he treated the symptoms and that made a huge difference. The best advice that I got from my support group was to remember the ONE-THIRD PRINCLPLE…..1/3 of your days will be good, 1/3 will be so-so and 1/3 will be bad. Accept the bad. I fought against the bad so hard. When I finally accepted that bad days were going to be a part of my life, I gave into them without guilt or frustration; I just let them happen and made the best of them. I was blessed with a miraculous healing after ten years of illness. I pray everyday that I am living the life God had planned for me when I received my healing. However, I know that if I had to endure the illness again, I could do so with the Lord’s help. I pray for the Lord to be near to you daily! Your good attitude of feeling blessed is half the battle! You will continue to be in my prayers. Looking forward to the novellas!
View CommentHi Cheryl,
View CommentI have never heard of the 1/3 rule but it makes absolute sense and is so true. I unfortunately have been in the “1/3 bad” since before Christmas and can’t seem to shake it. I would take some so-so days at this point. 🙂 Thanks for sharing your struggles with me too. Wishing you the best. xxoo, Barb
Barb,
View CommentThanks for writing this post. I, too struggle with an autoimmune disease, Multiple Sclerosis. Not exactly the same symptoms as thyroid disease, but the never ending fatigue is always there. I try my best to take care of myself including diet and walking on a treadmill every morning for an hour. I love your motto that you are blessed, because we are BLESSED!!!
Hi Julie – yes we are indeed, because I know in many ways it could be so, so much worse. Yes, the fatigue is never ending and I still struggle with not being able to do what I used to be able to do pre-AI. But I have to take it a day at a time and be happy I have a day at a time to take. 🙂 Thanks for stopping by. ~Barb
View CommentBarb, I pray that you find some relief soon! I am dealing with an autoimmune disease that affects my eyes and now possibly my ears. GEEZ! I’m currently on meds but have put myself on a very strict diet to hopefully eliminate them sometime this year. But, as you say, I’m blessed to have an understanding and supportive husband. So glad you opened up this topic with your readers as so many are suffering and just need someone to listen and understand.
View CommentOh Jane I did not know. Thank you for sharing this with me. The diet part is the hardest isn’t it. Some days I am honestly angry about it, but then I try to step back and see things from a different perspective. Hang in there sweet friend, and I hope you get better! xxoo, barb
View CommentCount me in! After my 2nd child my ovaries were the first to go, then the thryoid. With both going about the same time the male docs were either confused, stupid, or did not care. ha! Finally meds to the rescue…which I still take these many years later. Finally, my newest female reproductive endocrinologist told me I had auto immune issues. Throw menopause at 35 and hypothyroid together…fun fun fun. ha! As you say…it could be worse! Why does it take so long for a diagnosis! 🙂
View CommentHi Sheila – I question every day why diagnosis is nearly impossible and people must suffer so much for so long. Oh Lordy, don’t even get me started on the huge wrench that menopause has thrown into the system. 🙂 Fun times. NOT. 🙂 Hang in there.
View Commentthanks so much for your encouraging words, I have s few autoimmunes sarcoidosis , rheumatoid arthritis and prediabetes and raynauds phenomenon was told by one doctor people usually get three or more,… try every day to work to feel better . try healthy eating ,exercise when I can. I feel that when we lift each other up that really helps thanks again!
View CommentI so agree we all need to stick together and be a source of encouragement, because no one else understands what we are going through. Yes, I was told right after I was diagnosed with my 3rd AI that they come in three’s. Lovely, huh? Because one isn’t enough? 🙂 Take care of yourself. xxoo, Barb
View CommentI have had seizures since 2010, multiple myeloma in 2013 and now I am in the middle of treatment for breast cancer. The most distinct symptom for me is fatigue before each diagnosis of cancer. The multiple myeloma is an ongoing blood cancer which affects the white blood cells. Abnormal white blood cells are formed that attack the normal ones.
It takes a toll on people to battle long term health issues. I don’t feel like cleaning the house or even sewing and drawing much anymore. I don’t know if it is the seizure medication or the cancer treatment.
I am wondering what your diet is like. I wondered when you said something about carbs, do you mean carbs in sugar and baked goods ?
I wish you well and hope you keep us informed?
View CommentSue I am so, so sorry to hear you are in such a battle at this time. When I mean carbs I mean I have eliminated all white carbs such as pasta, flour, potatoes, sugar, etc. Even legumes and anything soy based. I try to eat as organic as possible but it’s so expensive, so I have started growing organic in my garden. It’s a tough life, and I won’t lie I slip every now and then because I love Southern cooking and pasta and potatoes and bread. But I do try to watch what I eat as much as I can. Look into eating a pH balanced diet for cancer. I am doing research on that, because cannot grow in a pH balanced body. I am praying for you for a complete recovery. God bless. xxoo, Barb
View CommentOur son has Type 1 diabetes which most people don’t know is an autoimmune disease and completely different disease than the commonly know type 2 diabetes. It affects every cell in his body and he fights for his life daily. He became ill his first year in college. But as you say, he looks perfectly healthy but struggles each and every day to just get to work and then rest his body enough to do it again the next day. I’m sorry you have this burden to carry, so glad you have a support team in your family. We are our sons team, the prescriptions and durable medical supplies and hospitalizations and flu days so are endless. It’s too hard to go it alone.
View CommentI had no clue about TYpe 1 Diabetes. Bless his heart, I hate to hear this for him and the life he will have to face. I am so happy he has YOU. It is very hard to go it alone. I am blessed I have family support too. Thanks for stopping by, Barb
View CommentI received this letter about 2 years ago. It pinpointed Hashimoto meanness to the T. It gave my enemy a face. By the Grace of my Lord, I will not give up. I apologize for smallness but you can copy and paste to enlarge. God bless us all.
I am Hashimoto’s Letter
Gena Lee Nolin posted the following letter on her Thyroid Sexy Facebook page. I find comfort and support in the words, and they remind me that there are many other people, who are suffering from many of the same debilitating and annoying symptoms that I deal with each day. This letter can also offer an explanation about the illness when you are unable to find the best way to articulate the words to family and friends.
I Am Hashimoto’s
Hi. My name is Hashimoto’s. I’m an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid. I am now velcroed to you for life.
Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and any way I please.
I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
I can make you feel very anxious or very depressed, too. I can also cause other mental health problems.
I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate.
Some of my other autoimmune disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons:
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I’m here to stay.
I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can help you effectively.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless – that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That’s probably me.
Can’t get pregnant, or have had a miscarriage?
That’s probably me too.
Teeth and gum problems? TMJ? I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how sick you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I am.
Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.
They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my grandmother had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE’S taking, doesn’t mean it will work for you.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.
I am Hashimoto’s Disease.
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I have never read anything as on point as this. I would love to share it. Thanks.
View CommentI hear you. I too am going down that road. FYI, there is a rheumatologist in the Pittsburgh, Pa area, Susan Manzi, MD who is famous in fighting the autoimmune complex of diseases. Patients fly in from worldwide areas for her care. Her practice includes some of the latest research projects including lupus. She and her staff include some of the MOST compassionate and comprehensive care I have ever encountered. My background as an RN provides an edge, so to speak, in determining early on, as you describe in you endocrinologist experience, that most practitioners sadly miss the mark in diagnosis. For 15 years I had this experience UNTIL………my first visit with Dr. Manzi. After a multitude of specialized lab tests and a really in depth history of my conditions, there was a solid diagnosis and treatment plan on the follow-up visit. Sometimes these conditions wax and wane and/or slip into additional problems, but, having the right Dr. at the get go is such support. I too am at a crossroad regarding the advice of a naturopath in addition to traditional care as my feeling is that as a nation, our food supply has been greatly compromised by chemical additions, too much sugar, genetically modified foods, etc., etc., etc. My heartfelt support goes out to you. Best wishes and, please keep usposted. You have a wonderful platform to spread truthful information about these debilitating diseases. Blessings!
View CommentThanks for the name of the Rheumie, Debra. I may look into her and see if my insurance would allow me to see her. I would be willing to drive to see her. I found another clinic but they did not accept insurance and it was $4600 out of pocket, up front, for a 6-week treatment. I totally believe it is the food sources that we are consuming. One of the reasons I despise Monsanto. I have started trying to grow more food and would love to be self sustaining. Maybe one day. Thanks for your kind words of encouragement. ~Barb
View CommentI was diagnosed with Addison’s in 2006. It was good to know why I felt like I couldn’t move. The endo doctor I see hasn’t been very helpful but I am so much better now. I was even put on less hydrocortisone recently. I still have some brain fog at times though and feel tired. I was put on synthroid in 1980 so the thyroid was kind of taken care of. I has been quite a journey. I did have a head start on the diagnosis as my daughter was diagnosed a couple of years before me. I at least had a starting point. It takes a while to get it all figured out. A good doctor is a plus for sure.
View CommentHi Norma – Isn’t it kinda sad and scary too how many women (and men) deal with these issues and so little medical help there is for it? You never hear of any research for it. It’s as if it is pushed under the rug and no one wants to talk about it. I think it’s so sad that so many people are suffering and very few seem to want to help, or know how to help. 🙁
View CommentHi Barb sorry to hear you’ve been going very through this, same thing happened to me. They couldn’t figure out what it was, but then send you home with Synthroid. You are on the right track with no gluten, no sugar, no dairy! Buy the book “medical medium” he thinks it comes from a virus and shifting the food intake stops feeding the virus. I went to Endocrinology specialist at North Western and he also recommends taking Sellium. Please keep us posted and hope you are feeling better. You can message me in your FB group if you want to talk more in depth. Hoping you feel better and thank your son for his service. God bless!
View CommentThanks Cydney – I feel I have to heal my leaky gut to get to the core. I have also heard good things about Sellium. Thanks for the book info I will order it tonight on Amazon.
View CommentIn 2007 I was rushed to the hospital by our school nurse because my heart was beating way to fast . I was told that they had to stop my heart and restart it and that I had SVT . During the time that I was at the hospital I was told I had Sarcidosis . They found that I had no B12 and I started taking shot every 2 weeks for that . My skin had lesion on it and my Lungs had lesion too. I started loosing the pigments called vitiligo. During that time my leg got to where they would not move without a lot of pain . I was taking medicine for my heart that I was have a bad reaction to . I started passing out. They finely got me off of that . I worked everyday at a public school did not miss school . My passing out happen on the weekend . I to where I could not pick up my feet I was then told I had neuropathy causing pain in my feet and legs. My body hurt all over and I would come home from school and sleep from 3 till bed time and sleep all night get up and be at work by 7oclock the next day for my duty. I took so much prednisone I too have had cataract surgery. After not missing work not one day I lost my job because I could not pick up my feet from the neuropathy . I failed down twice because of rugs. I liked 2 years before I could retire from the state . I was two young to retire . I have had my heart fix with a heart surgery. I then was told that I also had autoimmune disease. After I started staying home I slept all the time and gained 40 pounds. I truly thought for a while I was not going to live. I am now taking vitamin D and it’s been 5 years at staying at home I now feel better. I hope things get better for you. I have also started a low carb diet. Praying that you get better. Connie Dees.
View CommentOh Connie – it breaks my heart that you have been through so much. I have a friend who has Sarcoidosis and has also had an extremely hard time with life. I am grateful I have other AI’s but not that one. These AI’s are so scary and it’s also scary that they affect people in different ways. I’m sorry about your job but glad you are feeling a little better. Take care and God bless. xxoo, Barb
View CommentThank you for the information. I am experiencing some of these symptoms and just starting down the road of treatment. All of these comments along with your story are encouraging, knowing I’m not alone.
View CommentHang in there. I would like to say it will be easy, but I worry it won’t. It will be frustrating and angering and you’ll want to give up but don’t. You are NOT alone.
View CommentI don’t have an autoimmune disease but your post made me read up on all the types of this disease. Thanks!
View CommentGood Morning Barb!!!
Thanks for your kind reply to my first post. I sure don’t know how you manage to do ALL of the things you do; however, KEEP IT COMING!! I love it!! I am not someone who Tweets, uses Facebook, Instagram, or even a Smartphone….so forgive me…I don’t know if I should click ‘REPLY’, or do I just write a new comment (?). This is my first Blog ? I wanted to jot a line of support to you, for your thoughts about notifying your Congressman, etc. GREAT idea!! When I was a floor nurse, I worked full-time, was on all sorts of committees, and still enjoyed my church, my bike club, with it’s various metric centuries (100km trips)… I LOVED my traveling, water sports etc. I even had the opportunity to join a research team who studied the Atlantic Spotted Dolphin. I spent a week on their little boat, in awe of these creatures! Those were the days, and I am thankful I have had so many wonderful experiences/memories. Now, I don’t have the energy on most days to walk to the end of my court, to get my mail. So, thank you for all you do, it helps ALL of us ?! I just found out that I have a torn cartilage in my hip. I am a believer in PT, so I look forward to the challenge ahead of me. I REALLY don’t want to go the surgical route. It will be a tough road, but I think it will help more than just my hip. It will be a tricky balance of everything else that will need to be taken into consideration, but…. it is certainly worth trying. I will be praying for a good physical therapist, and together….we’ll see what we can do! At least I will be doing something, right?!? I also see you that you have an affinity for English things! Me too! I met my English hubby (Ex I’m afraid), when I went to my English friends wedding. It was sort of a ‘Four Weddings’ thing, and it still makes me chuckle! I look forward to reading your first chapter of your novel. No worries about writing slowly, it takes me forever to read things now!! Between the eyes going, loss of focus, and increased exhaustion….I hope you don’t write too quickly for me! 🙂 I need to catch up on the ‘comments’ from your readers, then I will try to keep up with every days entries. It’s a PLAN!!! Thank you in advance, to everyone who is able to ‘comment’, ‘post’, ‘blog’ or whatever you call it. We can learn so much from each other, and of course we all are here to support each other. I personally thank you all. It just dawned on me, do I click the ‘Reply’ button to comment on, or share support regarding a particular entry? Sorry if that is a stupid question. Thanks…have a great week.
View CommentI am not sure how you responded but you did it! 🙂 Yes, I have a letter already written, I just need to tweak, to send to my State leaders. It may fall on deaf ears but someone has to start somewhere. I woke up today and actually felt decent and cooked my grandbbaies breakfast. A real breakfast. Hope I have come out of this latest “episode” and have a few good days. God is good. Have a great day, Kim. Keeping you in my prayers that your PT is successful. xxoo
View CommentLong before the term “autoimmune” was birthed, My mother encountered a host of symptoms. She, too, went to a series of physicians until I was telling the doctor that I worked for about her symptomatology. He sent her to an endocrinologist who diagnosed her with Sheehan’s Disease/Syndrome. You might look into this disease. Once on the proper various hormonal replacements and diet, she managed quite well and lived an active life for another 45 years.
View CommentThank you for sharing your struggle with the various autoimmune diseases that you unfortunately are living with. I agree that each of us sharing our stories can give us encouragement, insight, and physician referrals.
I have Crohns disease and a sensitivity to gluten. For 20 years doctors told my mom that it was anxiety and nerves. We were told to meditate and to learn to be calm. Finally my.mom.found a specialist in Atlanta that had his own wing in a prominent hospital that was for the treatment of digestive disorders. That is when we got a definitive diagnosis. I would encourage your readers to keep searching for that one physician who knows what their illness is. There is hope out there.
I hope you find more answers soon and more relief for your ailments. Please keep us updated on your progress. We are encouraged through you.
View CommentThanks for sharing your story with us here, too, Bonnie. Only through encouragement and sharing of doctors and clinics as you have done will be all hopefully get the help we need and deserve. I hope you have a great week, Barb
View CommentJane at The Cottage of the Crossroads…….would you please tell me the symptoms you are experiencing with your eyes. I fear that my eyes are being affected by an auto immune disease. I am curious to know if my symptoms are much like yours. Also, did a physician or a eye specialist diagnose your problem? Thank you .
View CommentHI Barb,
View CommentThanks so much for sharing in the midst of your journey. I know that I have some sort of autoimmune, and I am in the process of isolating it.
Your post was the encouragement that I needed to keep going.
One question: how do you take care of your dry, itchy skin? May today be better than yesterday!
Nat
Hi nat – it’s a constant battle. I use tons of coconut oil and also I have been taking oatmeal baths, too. Sometimes the itching is so bad I have to take a Benadryl and I try not to take a lot of over the counter drugs. Hang in there. Read, read, read and educate yourself as much as possible. xxoo, barb
View CommentYour comments are important, your faith is encouraging. I, too, am suffering from the not really yet but kind of a little bit maybe oh never mind not really diagnosed auto immune condition. I am a psychologist, which is the ONLY reason I have not been officially told it is all in my head. After all, if anybody knows that is the case, it ought to be me, right? I figure I will be long gone before someone finally figures out the true source of all our suffering (I’m 59). Until then, I’m right there with you! We can support each other through this!
View CommentBarb—I’m so glad you shared your story. I have progressive MS, fibro, thyroid disease, and arthritis. The problem with autoimmune diseases is once you get diagnosed with one, you’re bound to get diagnosed with more. My MS got so bad that in 2008 I had to give up my career and go on disability. Since I’m not one to stay quiet for too long, I started blogging in 2009. It truly is great to connect with people who are in similar situations. I just wish so many of us didn’t have to suffer.
Take one day at a time and go easy on yourself!
View CommentHugs, Kim
Kim,
View CommentYou never really know how many women/men are affected do you? You go about your day kinda living in a bubble thinking you’re the only one who can barely get thru the day and then you find out there are so, so many. It scares me why. What is the root cause? 🙁 Thanks for sharing your story here with us, too. ~Barb
Dear Barb, when I first saw your Pinterest Page I thought to myself I like this woman this woman reminds me of myself, then I saw the post of you having an autoimmune disease I was astounded to say the least! I was diagnosed with Graves’s disease (another autoimmune disease) shortly after giving birth to my son in 1991. I was fortunate enough to have a Doctor who went the extra step (after many, many other test) of having my thyroid levels checked by an X-ray. Blood test showed I was fine!!!! I clearly was not! The X-ray showed I had an extremely hyper thyroid condition-Graves Disease- my body was killing itself. I received a radiation treatment to kill off my thyroid in turn I now have hypothyroidism.
On thyroid replacement it was pretty good for several years then the fatigue set in (I call it the big nothing..don’t feel nothing..no energy.. not happy..not sad just the big nothing). I understand your pain. I started doing research as well and trying to find a doctor that would look beyond the simplest of blood test now being in the Midwest that was proven to be quite the challenge. My research has led me to more self-help than anything else.
My new doctor has been a big help she does do the more intensive blood test, adjusted my hormone replacement dosages and let me go back on an anti-depressant (I had been on antidepressant previously to cope with a difficult marriage and ugly divorce). I consulted with a neuropsychologist here who explained that my thyroid or the Synthroid I am on was not supporting my hypothalamus gland in my brain thus my serotonin levels were not adequate. The antidepressant has really helped. It gives me the will to exercise, which along with an organic Paleo Diet, exercise is the true one thing that gives me energy to have a normal life. At times it is very painful and emotional to workout but if I continue past the pain and the emotional breakdowns my energy levels come back along with interest in other aspects of life.
Thank you for sharing your story I always feel if we share our difficulties instead of hiding them everyone has a better chance of success.
Love your website continue the good work!!
View CommentHi Barb,
View CommentI’ve been suffering with some kind of auto immune for over 10 years. It’s gotten worse since menopause maybe because when I was young I could push through better. I’m so tired and my eyes are super dry having seen many Drs and say it’s depression or can’t you just cry. It’s over whelming I am still trying to figure out what to do at times I think I’m done being here to go through one more day seems like too much. I keep pushing because now my daughter has been diagnosed with hypothyroid , out of balance hormones and now a reactivated Epstein Barr Virus and I see her going through some of the same things I go through, I fight. For her to get some energy and to feel better. Although you never get over auto immune Drs are finding ways to boost your immune system. One doctor who I have seen as told me about a product called Lauricidin. You can buy off line, look it up I’ve just started taking it so can’t say if it helps but you start small and build on it. Check it out! Here’s to finding not a cure but a better way of living, good luck on your search and keep us posted on any information you can.
Barb.
View CommentAuto immune disease has plaqued my family for years… My Maternal Grandmother had severe Rheumatoid Arthritis and died of Renal Failure leading my sister and I ( we are both nurses), to believe that she most likely had Lupus. But back 55 years ago, no one knew what Lupus was. Both my sister and I wee diagnosed with Arthritis in our 30’s. Osteo not rheumatoid. I have been tested for Lupus for years because my family Dr. always felt that I had it but my blood work did not show it. My sister was diagnosed with Discoid Lupus in her 50’s when she woke up one day with the butterfly rash on her face. She also suffers from Raynoud’s syndrome which is one of the hall mark’s of Lupus. Her oldest daughter was just diagnosed with Lupus last year, she is in her mid 40″s. One of her son’s has Psoriatic Arthritis..
About 5-6 years ago, I was feeling very tired, more so than I usually did because I worked full time night shift. I also have IBS ( again, autoimmune) and it was really rearing it’s ugly head along with more muscle pain than I usually have. My family Dr. ran blood work showing I had a positive ANA titer indicating Auto Immune disease. I then went to a Rheumatologist who did not think it was Lupus but ran all the Thyroid antibody tests and diagnosed me with Hashimoto’s Thrioditis…I have been on 25 mcg. of Synthroid since then with blood work done every 6 months to check my levels. IBS is my major problem causing me to not eat out and no longer travel. I never know when I will eat something that will put me in the bathroom for hours.So far so good with me except I do need a knee replacement and hope to put that off 2 1/2 years until I can retire..
I also suffer from sun and heat sensitivity and truly hate the Summer. I rather the Winter because I seem to do better in the colder temps…. I do take 3 BP meds but wee on them for several years prior to my diagnosis of Hashimoto’s…..
I have since gone part time and do feel better than when I was working full time……
Good luck to you and a pray for good health for you..
Hugs
Deb
You are an amazing woman and I truly admire you Barb! I have a sister and a dear friend with autoimmune diseases and I see firsthand how they struggle. You accomplish more in a good day than they do in a year and I believe its you outlook and determination not to let it beat you. I pray for you and that you can find the right person to help you restore you to your healthy self. Love ya girl!
View CommentThanks my sweet friend. I really don’t do anything at all most days but sleep or lay on the couch. I just work double time on my good days to make up for it. Love ya’, Barb
View CommentThank you for this. It’s hard to find blogs that are honest about the bs and frustration that comes with autoimmune diseases. I am 22 and have been looking for an answer since I was 18. So many people don’t understand. I often wonder what my life would be like without this.
View CommentOh I am so sorry you are dealing with this so young. I didn’t have to deal until my 40’s, so I can’t imagine. I pray that one day these illnesses will be taken seriously and some true research will start happening. Hang in there!
View CommentI can sympathize with you, and know all too well of the frustraction you feel. My husband also has a disease of the autoimmune system, Myastemia Gravis, which he has dealt with for over ten years. It also was very hard to diagnose, and we feel like he had it for several years before receiving a diagnosis. I also have a niece who has what you have. Thanks for sharing. Life can be difficult, but God can use all of life’s struggles to bring about good…your sharing will help other who are dealing with similar problems.
View CommentThank you for your comments, it is so sad how many of us suffer with some form of AI. Yes – God is good. Always. Thanks for stopping by. ~Barb
View CommentDear Barb, I just discovered your post on autoimmune disease. I have hypothyroidism as well as being diagnosed with fibromyalgia and chronic fatigue syndrome. My life has been turned upside down. I am a RN and had to go on disability. The severe depression accompanying my illness also lead to a diagnosis of bipolar disorder. Now I am wondering if all my symptoms could be attributed to Hashimotos.
View CommentMay I direct you to Dr Isabella Wentz, doctor of Pharmacology who recently aired a nine part series online called The Thyroid Secret. Her book Is “Hashimoto’s Thyroiditis. Lifestyle Interventions for Finding The Root Cause “. On March 28th her book on “Thyroid Protocol ” will be available. The amount of research that she has done is incredible and has been life changing for many. Also I refer you to Dr. Mark Hyman, a Functional Medicine pioneer.
His book “The Blood Sugar Solution ” is a thorough explanation of how we can take back our health. Like you, most of our experiences with traditional medicine have been negative. It is necessary to explore alternatives for healing.
I hope you will find these resources helpful in your journey to wellness. Many blessings to you.
Hi Denise I am aware of Dr Wentz and I am also anticipating her book. I follow her on FB as well. She has been very kind and personally answered some of my questions I have left on her site. I feel your pain, literally and figuratively. I want my life back, too. 🙁 Hang in there, I pray we can all find answers one day. Thanks for stopping by. ~Barb
View CommentPlease consider seeing a functional medicine practitioner. This is an MD trained in a relatively new (10 years or so) field of functional medicine where the dr. finds and treats the cause of illness, not just the symptoms. My story is very similar to yours, and my traditional treatment for Thyroid disease for 15 years has been synthroid and prescription doses of advil for pain, based solely on TSH test results. I had to retire early and learned to live with limitations. After doing intense research into autoimune diseases I recently switched to a functional medical practitioner (an md) who did many more tests I’d never been offered before to find out why I developed Hashimoto’s in the first place. It turned out I was riddled with widespread autoimune inflammation, put on a strict diet limiting foods I tested positive for sensitivities to along with dietary supplements. 10 weeks later, my test results as of yesterday were all normal and, most incredibly, my thyroid antibodies were in the normal range for the first time in 15 years. I still must take synthroid because of past damage to my thyroid, but I am cured of Hashimoto’s and my widespread autoimmune inflammation is on the way to being cured. My body has stopped attacking itself and is on the road to recovery. Traditional doctors are trained to treat symptoms, not find cures. Functional Medicine doctors are trained to find the causes of illness and cure them. You may be able to cure your autoimune disease. Good luck!
View CommentI appreciate your story. We are all unique, but I can relate to a lot of what you shared. I have rheumatoid arthritis. I felt like I had the flu for a decade. My symptoms were atypical and lab tests negative. Once I was diagnosed I was able to treat the disease aggressively with medications. I am a pharmacist, so I knew that would give me the best outcome. I then looked at lifestyle changes to aid my healing. Diet, stress reduction, pilates, good sleep patterns and staying well hydrated have made a huge difference. I have a new normal to my life. It may very well be better than when I was going full speed ahead!
View CommentI was first diagnosed with MCTD and a little over a year later another doctor said it wasn’t MCTD but fibromyalgia. I have had a hysterectomy and now the doctors are talking about surgery on the veins in my legs but no knowledge of what is causing the issues. I wake up and my face is puffy, my body is stiff and I ache all over. Joint pain and swelling in my hands and feet, my hips feel like they are being pulled out of their sockets ( almost like spreading in pregnancy ) I have red blotches on my chest that gets worse when I’m active or in the sun. I’m tired all day yet can’t sleep at night or during the day for that matter. Brain fog and memory loss as well as sensitivity to multiple sounds at once. I’m sure there is more but that is what I’ve been dealing with the past two weeks.
View CommentHey Everyone,
So I am at a loss right now with my health. I am 24 years old and have been awfully sick since I was a child. When I was 5 I had an abscess kidney and was hospitalized for 2 months. When I was 9 I started passing out randomly. I had blood work done, sleep tests done, wore a heart monitor for a month, and everything came back perfectly fine except slight heart murmur. I also had a lot of eating issues as a child. They suggested I was lactose intolerant and I stopped dairy for quite some time and when I was around 10 my mom tried to add dairy back into my diet and I handled it perfectly fine and been eating dairy ever since. My pediatrician suggested I might have Addisons disease except he said I was way too young to diagnose. I have also always had chronic kidney infections (sometimes to the extreme of urinating blood) so my urologist put me on a long term antibiotics and blamed it on damage done from the abscess when I was a child. I was also down and depressed as a child therefore I have always been on some kind of anti depressants to try to help my mood. I was always very sick as a child as well, any cold that went around I got especially strep throat. I was rushed to the ER in middle school from my tonsils becoming so swollen I could not breather. I had an emergency tonsillectomy and luckily have had no problems with my throat since then.
I am now 24 years old and my health is worse then its ever been. I have rapidly lost 35 lbs in 6 months ( I am 5’8 weighing 106 lbs now), I was throwing up everyday. My doctor suggested an EGD- so I had an EGD done and they found H plyori bacteria and barrett’s esophagus. I went through the TERRIBLE treatment for H. Plyori Bacteria and started taking protonics for the barretts esophagus. I am no longer throwing up but now other symptoms are occurring. My fingers tips randomly go numb, my stomach is almost always in pain to the point I don’t even want to eat, I get TERRIBLE headaches that only weed seem to help with, I am loosing my hair, and have a dry, crocodile rash under my eyes. My body randomly aches and feels heavy for no reason. Some days I feel like its impossible to get out of bed. I have seen a dermatologist, urologist, cardiologist, neurologist, and not one single doctor can explain what is going on. Some have even told me my lab work comes back fine and maybe I need to go to counseling. IT IS NOT IN MY HEAD! I am a shell of the person I use to be. I have scheduled an appointment with a rheumatologist and am praying I can get some answers. Has anyone else ever had symptoms like this or does anyone have any advice?
View CommentI was diagnosed with Auto Immune disease 3 years ago, I have Rheumatoid Arthritis (And no, this ani’t your grandma’s creaky bone arthritis.) It a mean and painful disease, with other symptoms than joint pain. When I tell people I have RA, it’s so dismissed, that I have stopped telling people I’m even sick.
I too feel like the doctors are still missing something though. I have other symptoms that doctors just shrug off, but I know they are real, and not easy to live with. As a working mom of three boys, some days seem unbearably. I have a very small group of support, but those people are the ones who keep me moving forward. Without the support of my husband, I know for fact I would be where I am today. Thank you for the words of encouragement, and yes, you are blessed. 🙂
View CommentAt age 60 I never imagined I would look forward to days when there were no appointments on my calendar so that I did not even have to get dressed. I think I was born with a bit of OCD but these days I simply don’t have enough energy to care much about those things. After the birth of my youngest son in 1989 my hair began to fall out by the handfuls. I was diagnosed in 1990 with hypothyroidism and given synthroid. I began to feel better and the hair loss stopped. Many years later I developed lupus anticoagulant which caused a DVT and two PE’s that nearly took my life. Also at this time I began to have these lesions that appear singularly as a round to oval spot with a thin white scale on top. There will be a stinging pain prior to these lesions. The white scale peels off the next day or so and underneath is red. It itches but if I scratch there is pain. No one knows what this is. These lesions are now more frequent and while they used to be just on my left arm they are now on my left leg as well and I have had some on my face. Today there is one at the corner of my eye on the left side. Scary stuff. I have random pains that feel like someone somewhere has a voodoo doll of me and is inserting pins and pulling them out. And to say I am tired is the understatement of the year. Last week I had one day where I was in bed for 15 hours straight. I am up this week but I can’t do very much. I’ve gained a large amount of weight over the years. My last visit to the eye doctor documents dry eye and severe light sensitivity. My skin is dry and my hair is thin and baby fine. Then there is bone pain and muscle spasms. I take a lot of supplements and medications but not one doctor really knows what is wrong with me. The Rheumatologist recently ran a vast number of tests looking for sjogrens and lupus. Everything is negative. So I have the mystery sickness. She prescribed plaquenil and after reading so much about it I am afraid to take it. I wish I could wake up and this was a horrible nightmare and I could hop out of bed and take my 6 grandchildren to the park and enjoy them. I would settle for being able to clean my house by myself. It’s horrible for anyone to have a disease, whether we know the name of it or not. After reading this, I don’t feel quite as alone. Prayers to all.
View CommentI’m so so sorry you are going through this. I also get lesions on my scalp and that is generally a sign I am going to have a flair up. I will say I have been feeling much better since I started a KETO diet and I am using lots of essential oils. I also started taking B6-B12 and 5000mg Vit D-3 and a good probiotic and its made a huge difference. If you can afford it, try to see a Naturopathic doctor. Praying for you. xxoo
View CommentI’m 25, undiagnosed, and I feel alone. I’ve been told I have, anxiety, asthma, and IBS, yet those just didn’t seem right. I’ve never been an anxious person before, it just doesn’t calculate. I try to tell family members that I think it’s autoimmune (it runs in the family), yet they too think I’m a hypochondriac. I have a laundry list of symptoms, I’ve seen gastros, gynecologists, General practitioners, psychologists, whom don’t seem to find an answer. Do you know of any support groups out there for people like me? I’m young, and it’s terrifying to read these comments where people say it’s taken years for a diagnosis! Sometimes, I want to throw in the towel and accept the fact it could be anxiety, succumb to pressures of doctors thinking nothing is wrong, but I know deep down that I am not healthy, that this isn’t how the old me once felt, and that I don’t deserve to be ignored. Thank you for your post. I’m finding these silver cloud linings of hope out there through places like your blog.
View CommentKaitlyn there are lots and lots of support groups on Facebook. Just do a search for auto immunes. Don’t give up. This is NOT in your head. I have also been told that numerous times by so-called medical professionals. Yes, it took me almost 7 years but I also had faith in doctors, most of whom have NO idea how to deal with auto immunes. I will give this advise lightly because everyone has to find their own journey to health, but read, read, read and research. I truly think diet is key. I gave up all sugar, for example, and noticed a huge difference. I added vitamins (Vit D-3 (5000mg) has done wonders for me!) I also added b6 and b12 and take Turmeric for inflammatory as well as Brigg’s apple cider vinegar. I have also cut out almost all gluten. I say almost because I am human and slip up. My point is, there are some things you can control today starting with your diet. You have to get your gut healthy again. Take a good probiotic. YOU have to start being your own health advocate. I know it sounds overwhelming and I know it sounds like you have to give up a lot. In some ways you do. But I decided I would rather give up some things and have my life back than live the way I was. Please feel free to write me anytime. theeverydayhome@yahoo.com
View CommentI just found your blog today! I loved reading it. I’ve been having weird rashes and other things for about 10 years. A couple years ago I started having pain in my knees to where I could hardly walk. I fell down the stairs with my baby because they gave out. I waited it out for a while and it wouldn’t go away! I finally went to see our family doctor. I told so many people about my pain, it felt like most people just thought I was crazy and it was in my head. My doctor decided to do some blood work just to see what it possibly be he didn’t give me any info on what he was thinking. “He probably didn’t want to scare me until he knew” they called me a couple days later to come in. They said they couldn’t discuss it over the phone. He sat me down and told me I can back ANA positive. I had NO IDEA what that meant. When he explained I didn’t know still I was scared and worried. He put me on a sliding steroid they made me SO sick! I went back and he asked if it helps. Unfortunately in a way it did help so he basically broke it down for me that my chances “sense it worked” was I had an autoimmune disease. We don’t have a rheumatologist in our city so I had to travel. She said I had Raynaud’s after looking at everything and my blood work. She also put a name to everything else going on, MCTD. She ran blood and the whole 9 yards I was supposed to go follow up but I had an issue with the office and didn’t go. Go me for being stubborn right?! Ugh. I should’ve just gone back. So I was taking steroids and got some shots. It helped the knee pain alot along with the swelling. I haven’t felt well sense I don’t know when. Recently very suddenly the rashes came back along with inflammation in my stomach and then the pain but in my ankles this time! It’s been over a year sense the pain has been this bad. All of the emotional stress is coming back. I’ve been in and out doctor’s and the ER for about a month now. Sometimes I feel like they look at me like I’m crazy. They tell me I don’t have an “official” diagnosis and living where I live I feel like there is no where to turn!
Sorry for the HUGE post. I loved this blog and I am so glad I’m not the only one out there that has been told it’s probably in my head!! ❤
View CommentHi Tawny please don’t apologize for a long post. I am so glad you came across this blog and this post. More than anything know you are NOT alone and millions of other women are also suffering. Yea – the weird rashes. Sigh Just one of many unexplainable symptoms. Hang in there, and keep pushing. Buy some books on the AIP (auto immune protocol) diet and try to eat as gluten and sugar free as you can. I have started yoga for stress and I think its helping. More than anything, give yourself permission to rest when your body says rest. Hope to hear from you soon and that you are making some progress. Blessings, Barb
View CommentThank You!
View CommentI’ve been dealing with what several Dr.’s (I’ve lost count) thought has been Systemic Lupus Erythematosus, for about 7 years. And was also diagnosed with Celiac disease. I recently had further testing from another Dr & found out I do not have Celiac disease, and I don’t have Lupus, I was told a few months ago I have Dermatmyostits. It causes malignancies in your body, and effects your muscles. I too have been flooding my hair, my skin is awful, if I bruise I don’t heal, my symptoms are too many to list. But I thank you so much for writing this . It’s good to remember that you’re not alone. God bless you.
Hi Barb,
View CommentSo today was the first day that I said it out loud. I HAVE AN AUTO IMMUNE disease… I have been dealing with significant pain in my legs for the last 10 years. A couple of years I was in “remission” — lately no such luck. My first desperate attempt at medical help — the doctor yelled at me. “I TOLD you, you have inflammation!”
I could not take that as an answer. According to her I would be taking Flexiril 3 times a day…and sitting in a tub of ice. (I couldn’t function on ONE Flexiril taken the night before!) I just kept on – crying in my sleep, taking Motrin, Tylenol and Advil like candy. Eventually they found a lipoma tumor in my right leg and I thought removing that would alleviate my pain. I was wrong. I found an incredible chiropractor/kinesiologist — practioner of functional medicine. She was always confirming how I tested for heavy metals. I was at the end of my rope when I walked into her office in desperation and she said. “Elena you have serious inflammation — let’s take care of that” One month later through diet — (strict cruciferous vegetables and supplements) I was 25 pounds lighter and out of pain. What a godsend! WOW! she gave me my life back.
Fast forward 7 years – I have had continual bouts…and set-backs. Thinking that I am normal and can have a piece of sourdough bread — or that piece of pie. I no longer am responding to clean eating.
I am having total hip replacement surgery in a month as I have been walking with the help of cane for most of this year. X-Rays don’t lie so I am no longer in denial and I have agreed to have it replaced. Having said that I am frustrated of trying to explain to people about my “other pain”. They don’t understand —I do suffer from leaky gut — I have never been formally diagnosed but have suffered through some extremely painful episodes. There was the time I thought I would do a “juice” diet with my daughter, after the first day…. I could not walk a block to save my life because I felt like my leg muscles would explode.
I have learned to listen to my body, to pay attention to what I put in my mouth. No sugar, no gluten…I have tried to heal my gut only to have the pain come back months later with a vengeance…
Right now my pain is about a 10. I resorted to taking Aleve to get myself into work this morning. I have literally broken down in the solitude of my home when simple tasks have proved daunting. I can no longer make my bed, or come down the stairs, or do the laundry. I started weeding in my garden the other day because it was sunny out and I love being out there. I got down on my knees in the grass and looked up at the redwood trees against the sky…and I lost it. I sobbed and sobbed like a child. I sobbed until there were no more tears left. I asked God and the universe for help — for strength to “fix” myself and what ails me. Barb, your story resonated with me. I too used to be a super mom… taking care of 3 girls by myself. Working full time. I cleaned my own gutters…and fixed my own faucets. I was so INDEPENDENT and now I can barely get in a car. My dear devoted fiance has to lift my legs into the car for me. He lifts me gently in the bed at night… and when I get myself in a position where I cannot get up — he is there to help me stand. I have had way too many breakdowns recently because the pain is fierce. I keep going because I have no choice. I have not given my pain a name until today (just autoimmune) and somehow it has empowered me. I don’t believe I have Hashimoto’s but interestingly enough my sister was diagnosed with it. I have yet to get a diagnosis for what exactly ails me because I gave up going back to traditional doctors. Having said all that, I feel more positive than I have in weeks— I no longer feel alone. I know I can do this —and reading your blog and all the other women’s stories has given me hope.
Hope that I thought was slowly withering away. I’ve wanted to throw myself off a building or go off a cliff at times. (fleeting thoughts… but that’s how bad I have been) I think how unfair this has all been to my loving fiance. We just met this year and months later I started my painful spiral downwards. He refuses to leave my side so I am feeling extremely fortunate for that as well.
All in all — stopping in here today was like a shot in the arm. I like your opening line : I am blessed. I would constantly say that as I walked in the pain…. “thank you for my legs that hurt” —-because I know that I at least have legs. Thank you for the body that has turned against me because I am still able to be here to enjoy my family. Thank you Barb for letting me share. I am feeling pretty blessed today and praying that tomorrow will not be a ten…but maybe a 9 — or maybe even an 8. I will take the small victories where I can get them. AND THANK YOU MOST OF ALL for showing me that I ( that we) are not alone in this.
May your journey get easier.
Thanks for sharing your story! I am currently being tested for an auto immune disease right now. My body: bones and muscles constantly ache. I am feeling tired and that’s not normal for me. my hands are constantly red and burning or white and cold. my fingers, knees and feet have the same reaction and the swell up. I have super dry skin on my hands. New Dr. just ordered another round of lab work since I tested positive in the ANA twice. I guess time will tell. Again thank you for sharing and I wish you the best and I hope you feel better soon.
Take care.
View CommentBarb,
View CommentI can sympathize and empathize especially feeling so tired, (with extreme fatigue and insomnia). I’m a 57 year old man. I retired after working with mentally challenged individuals for 29 years, moved to another city, got married, got a part-time job and then a full-time job working in living facility. I hurt my back lifting a patient. I had quit both jobs. I was diagnosed with adrenal fatigue, hashimoto’s depression, and leaky gut. It’s been a scary nightmare. There have been many times when I feel talking to my wife I should be in a mentally challenged institution.
I understand you feel like your dying. I sleep but still feel exhausted (I do not experience restorative sleep) I admire your positive attitude. Sometimes I just want to give up. My family does understand. I have cried so many times over being sick. I miss the old guy. My wife and I were newlyweds.
Sheesh, I have been searching and googling autoimmune blogs all morning in search of a blog that I can follow and not feel like some sort of crazy person. I cried two paragraphs into your post. Everything you said, I feel and for the past two years I’ve doctors, partners, friends and family members make me feel like I am either crazy or need to toughen up. I literally have started to convince myself that maybe I just do need to toughen up. This post was such a sigh of relief. THANK YOU for sharing and writing so well. I’ve landed on your blog as my blog to follow! Thank you again, your strength helped me start to move my own mountain.
View CommentWe could be twins! I have spent 10 years, 50+ doctors, 4 medical institutions and no real diagnosis. The symptoms were treated, but no answer as to what caused the symptoms.
View CommentI take it a day at a time, and grateful I can still enjoy my family and friends and receive emotional support from them.
I have e 3 autoimmune diseases, RA, Hypothyroidism and adrenal insufficiency. I just returned home from 8days in the hospital with phenomena. Never had phenomena before and I thought I would recovery like a cold. Not true! I am a man of 76 years and blessed with a beautiful bride of 55 years plur3 adult children who I am proud to call my friends. Their support has been remarkable and humbling. Just started looking into autoimmune disease, my internist had a a a come to Jesus visit with me and explained that I am starting a new chapter in my book of life. He explained that he wants me in his office if I feel the least bit ill,further stating that he would rather send me home for having no problem than sending me to the hospital with septus. Good man. I thank you for sharing your story. I understand the pain and frustration you have endured. I am so blessed with understanding physicians with whom I have open and frank communications with. Probably due to the fact that I told each of them that they woked for me and I would fire them if I was dissatisfied. The last thing I will add is that attitude works for me. I have a very positive attitude,bolstered by the amazing support network of family and friends that I enjoy. I will pray for all of our fellow travelers on this uncertain journey. God bless and live it to the max. Mark Hochanadel
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