I’m working on the “Define your Dash” challenge from FamilySearch.org The challenge is writing 52 post/stories in 2017 that defines who I am. This year I plan to blog about my regulars: Temple Pictures, Kids, Family, Parenting and Photography.
In addition, I’m going to blog about something that I don’t try to focus on in my life but since I’m “defining my dash”… it’s just part of who I am! Ever since I was a toddler, I’ve been diagnosed with multiple autoimmune disorders.
I have friends who live with terminal illnesses such as cancer. Others live with diseases like CF which require extensive medical care. Then even other people with mental disorders that are silently endured. Friends with birth defects, special needs, heart problems… the list goes on…
Autoimmune disorders fall in it’s own category… a category which I feel like even after extensive personal research is still very much unknown and undefined. It’s about having good days and bad days. It’s about learning how to live with symptoms with an unknown cause! It’s about searching without finding solutions. It’s about going to the doctor and saying “I have all these problems… please fix me…” but all they do is send me home with more pain medications or take out another organ which is causing pain!! Please don’t take out any more of my organs!! 🙂
My hopes about writing about my autoimmune disorders is not to complain but instead to share what I’ve experience in hopes to connect with others who may have the same problems. I want to share how I cope with these illnesses and also the blessings I see from having autoimmune disorders! ❤
These are the autoimmune/immune disorders I have been officially diagnosed:
- Eczema
- Psoriasis
- Grave’s Disease (Hyper Thyroid)
- Still’s Rheumatoid Arthritis
- Drug induced Lupus
- Chronic Idiopathic Urticaria (Chronic Hives)
- Allergies to cats, pollens, trees and grass (Ranked 5 on allergy tests)
- Chronic Gastritis in Stomach
Other annoyances and symptoms:
- Asthma
- Recurring Bronchitis
- Recurring Strep
- Recurring Ear Infections
- Recurring UTIs
- A hernia in my diaphragm which causes acid reflex
- Unknown GI Problem – Irritable Bowel Syndrome? Gallbladder?
- Hypo Thyroid due to radioactive iodine treatment to kill thyroid gland
- Pain in upper right quadrant of abdominal/back – Kidney? Gallbladder? Arthritis in Ribs?
- Daily Headaches @ ~1-2 pm – Tension Headache? Migraine? Arthritis in neck?
Well… that’s all I can think about for now… I might add a few more symptoms later… I will try to write about a few of these disorders this year! I know I don’t always see it this way but it really has been a blessing God has given me to deal with these problems. I have a awesome hubby in medical school so it really helps to ask him lots of questions! I also know how to look up scientifically sound research on the internet which is a great skill to have because there is a lot of junk out there. I want to go about this in a very positive way and share what I’ve learned with you.
Now my question is: Do you experience any of these symptoms?!!? Or have an autoimmune or immune disorder?
Hubbard's Cupboard 
I have lived with food intolerances for about 40 years and the last 7 years I also became hypersensitive to smells from perfumes, aftershaves, detergents and the list goes on. I wore a mask to church but even that was no good at a packed stake conference. It would leave me totally unable to speak, my vocal cords would spasm, and then the headache and nausea set in. However, 4 weeks ago I had an accident that fractures my clavicle. It left an area near the sternum with altered sensation and now the perfume sensitivity appears to have cleared. Its like a miracle to me and I just hope it stays this way. We just have to get by the best we can and have faith in our Saviour.
Wow… I can’t believe an accident could cure you from the allergies. I bet stress causes allergies but imagine if stress cures allergies! You are so positive. Thank you for sharing! I also have food sensitivities and the list seems to get bigger as life goes on…
Wow MayBo- that must get awfully annoying sometimes! I have a friend who has Graves disease. The doctors said they couldn’t take out her thyroid yet because she is young (she was in her late 20’s when I knew her). She is losing her sight in one eye.
I had chronic fatigue syndrome actively for about 2 years. It was nuts. Felt like I had a sleep switch in my brain that somehow got switched on. I would sleep all day and all night- just up in the evening for 4-6 hours. Chronic scratchy sore throat, fuzzy brain, trouble recalling words, constant low grade headaches. I finally decided I had to go back to school even if I could never do what I could do before. Started with 1 class at a time and worked my way up from there. Symptoms started to go away and I was blessed to I guess go into remission? They do seem to flare up if I really push my body but have not come back for good.
Wow I got my thyroid done when I was like 12. I had no idea what I would be dealing with later on with pregnancy and not having a thyroid. I can understand the doctor suggested not getting the thyroid out during child bearing years. I heard about your sleep problem and I am so glad it went away and it hasn’t come back! I hope some of my problems won’t come back but the only thing I can do is wait and see!
I was diagnosed with fibromyalgia in 1999. It has over 70 symptoms of its own. I am hypo-thyroid even though I still have my thyroid.
I manage it without narcotic pain meds because I am a recovering addict.
Wow. I’ve never even heard of fibromyalgia until you commented. I’m glad to learn about another autoimmune program to watch out for! That is great that you can avoid the narcotics! Way to go.
Wow. I had no idea you were struggling with these health problems.
I have had rheumatoid arthritis for over 12 years now and could pretty much work around it as long as I took biologics, so my body added fibromyalgia. I’ve had to quit work because of it, but have a great family to take care of me.
It gets easier as your darling little ones get big enough to really be helpful.
Those biologics are great! I had them when I was 17 but I’ve been able to manage my RA pretty well. It is progressing so It’ll be interesting to see where it’s heading and … yes I’m going to be so grateful to have kids who can help.
Wow, that’s quite a list! And you seem like going strong with all that…and with 3 little children…huge and huge respect!
About me, I have a family history of asthma and eczema, and after years of being allergic (esp to pollen and grass, also highest grade) I was recently diagnosed to be also allergic to raw food (fruit and veggies, ouch!) and some chemical stuff. Far not as long as your list, so I’m thankful for that. But I hope you will be able to cope with your health issues. Keep the spirit up and lots of hugs!!!
Oh my…. raw foods!! That must be so hard! I’ve found that my exzema is all allergies and it’s gotten a lot better once I’ve stay away from the allergies!
I’m sorry to hear you are struggling. I also suffered from autoimmune issues triggered by Lyme Disease and other ailments. After years of pharmaceuticals, I decided to go holistic and focus on healing my body chemistry. I have been symptom free ever since but had to live a very strict lifestyle to get there. There are a lot of great functional medicine doctors out there who wrote very informative books on healing holistically. My favorites are Dr. Susan Blum and Dr. Terry Wahls.
I have been living with systemic lupus for over thirteen years and it is not always a breeze. I’m so sorry to see you’ve had this much to deal with, but it’s people like us that help to spread awareness. So, thank you for that! I look forward to following you 🙂 Best, Talia
How do you cope with so many issues related to your autoimmune condition? I feel blessed that I was diagnosed when I was 11 years ago aged 40. I do wonder though if my teenage migraines and early 20’s psoriasis were just the start of it. no one ever mentioned autoimmune or thyroid issues to me. No discussion on how to heal except drugs and no explaination that the condition is lifelong and one issue can lead to another and another. Now I too am learning and sharing as best I can. Thanks for your post.
Hey! I am going back through some of my old comments and realized I missed this one. How are you coping? I have gotten a diagnosed and I take hydroxycloroquine and I have been exercising. It helps a lot. How are you doing?