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!
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” …finding joy in the everyday! “