I met one of my best friends for coffee the other night. I always love our coffee outings because I like to have real conversation and our conversation has always been real. I would protect all my friends anonymity but this particular friend and I have one of those unique friendships that sprung between two people who came from different cultures and backgrounds and who realized quickly through trying to understand each other, that we never had to be anything we previously were for other people or with other people with one another. I learned more about what her culture expected of her and who she felt she had to be and she was equally curious about me and my culture, etc. Our unique friendship started when we started learning about each other and asking all the frank questions we just had to know the answers to and we quickly learned to shed all pretense and just fire away.
My friend has never been the type of person to be defeated by things easily or to let life get her down so much and she's always been peppy and friendly and just fun. The last couple of years, she's been letting life get to her (and people,) and it's just not like her to be this way. Myself and some mutual friends of ours (other cysters or folks with similar health issues,) begged her to get her iron levels checked as we had recently learned from what happened to us, how Iron Deficiency could impact every facet of life. She said she would check and so I was surprised when we were leaving and she said her doctor gave her these giant horse supplements and told her that her iron was low. Actually, I wanted to beat her up for not telling me sooner but she forgot. Forgetfulness is one of the biggest symptoms of iron deficiency. In fact, if you Google 'iron deficiency and ADHD,' you'll find some scientific journal articles connecting the two. Could this be behind the rise in adult ADHD diagnoses - especially amongst women? You do the math.
I wanted to spill all I knew about this subject but she had to leave and so I will have to content myself with the knowledge that she might potentially read my blog - especially if I tell her I was talking about her. Hopefully she won't kill me. So, I will tell my story here to all of you.
Back in February of 2011, I took a diet drug I never should have taken and I began to suffer from severe insomnia. It went on for months and by June, I had reached a place of severe debilitation. I was lucky if I slept for 3 hours a night. If I took antihistamines, I might get 5. On the weekends, I would double-up and hope to get 7. Some nights, no matter what I took, I would just lie there stuck in my head with myself. Doctors had no suggestions for me and so I decided to work with a Naturopathic Nutritionist who cost a fortune but ran a lot of tests. Way more than my doctors ever ran. I found out a lot about myself. There were two tests that he ran that were interesting. He tested Iron in two forms - circulating and storage (called Ferritin,) and also tested Vitamin D in the same fashion. I found out that my circulating Iron was normal but my Iron storage (Ferritin) was getting low. He explained that when you're circulating Iron looks normal and someone complains of fatigue, that doctors need to check Ferritin as the human body will rob from internal iron stores in the liver, pancreas, and bone marrow to keep iron in the bloodstream as it's needed to make hemoglobin. Hemoglobin is what ferries oxygen from the lungs to the rest of the body. My Nutritionist also tested Vitamin D and we discovered that while my circulating levels of Vitamin D were high, my internal Vitamin D storage was really low and that meant that I wasn't absorbing all the Vitamin D I ingested and that could cause toxicity. He advised instead that I get more sunlight. (That will be a topic for ANOTHER blog.)
I worked with this Nutritionist until I couldn't afford to pay him anymore and then I also had to go back to work. I slept a little better initially from the change to a borderline Vegan, very whole foods, non dairy, non gluten, non egg, non soy diet but after the initial ten pounds of water weight was gone, I began to build up exercise and only lost another three pounds. I also started not sleeping again and I would just cry at all the things I couldn't do anymore because of the dietary restrictions. No more drinking with my friends for Happy Hour. No more trying new restaurants unless they had gluten free options. No more tea and crumpets with the girls. No more wine and cheese tastings. Beer tastings. That was like a death blow to the gut. I knew that I would have to keep to that diet forever and I knew while I was sitting there sobbing through a Sargento cheese commercial (True Story,) I wouldn't be successful. I always love how they call it a lifestyle change. It's not. It's a 'become someone with a different life' change. Say goodbye to YOUR life. Say goodbye to everything you love, everything that defines or identifies you. Say au revoir to all that you like to do. Tell your friends 'Sianara' because you're no fun anymore and they feel so bad and have so much pity for you that you can barely be with them. Lifestyle change? You're telling the girl who couldn't change her handwriting for drafting class to change her whole self? No. No, no, no, no, NO!!! After that, I went to prescription medications to sleep and control my increasing anxiety and took a stimulant to make sure I was focused at work and did my best to carry on.
I had pointed out a lot of these things to my regular doctor during this time and so with every subsequent visit, I would ask him to check Ferritin. I just didn't let it drop. After another 3 or 4 tests, and like a year later, he finally referred me to a Hematologist. (Please note, I tried lots of times to supplement but I couldn't take more than 50mg a day without life stopping constipation.) After this, I got nervous, and I started to research more and make myself more nervous but during all those nights that I was still awake at 2 or 3 o'clock in the morning, that's when I discovered that Iron Deficiency Anemia starves the body of oxygen and causes you to have pale skin, shortness of breath, heart palpitations, fatigue, forgetfulness, listlessness, depression, insomnia, anxiety, psychological problems, restless leg syndrome, and muscle aches. After a year and a half of no sleep (and people accusing me of having sleep apnea 'cos that's what it just HAD to be because I'm fat,) depression, suicidal thoughts, restless leg syndrome, muscle aches, legs I could barely walk on (I had to drag one leg up the stairs,) extreme anxiety, heart palpitations (when they could find nothing wrong with my circulatory system, arteries, or heart,) forgetfulness, listlessness, and let's throw in that I've always looked like the only white person in my tan or olive skinned family and... Shazam!!!
With my Hematologist, I had to again prove after another 90 days that no, I could not successfully digest 325mg of Iron 3 times a day. During this 90 days, I did more research, even downloaded books. I found explanations for my dry skin, for the hair loss (in addition to the PCOS,) and also read that when the body is in an anemic state, it pulls blood back from all the parts of the body it doesn't deem as wholly necessary for survival - concentrating most of the blood between the lungs and the brain - the heart pumping 3 or 4 times the normal rate to keep oxygen in constant circulation. I started to get smarter in my 2:00AM searches. Anemia and ADHD. Anemia and thyroid. Anemia and Autoimmune disease. Anemia and PCOS. Anemia and OCD. When my doctor finally agreed to infuse me intravenously, it still took 2 reminder phone calls and a reschedule before I got my appointment. During this period, I caught the crazy whooping cough cold that lasted 17 days four times in a row and ended up with pleurisy and pneumonia. I've read some articles where it states Iron Deficiency could impact the immune system but my Hematologist seemed unsure about this when I asked. Still - four times? As the days crawled closer to my treatment date, I could barely function. I told some friends about the treatment and some were disinterested, one told me she was glad I was finally doing something about it which was completely insensitive and by then, I was so exhausted I thought I might die and I honestly had reached a point where I wanted to. People were so tired of me feeling bad they perceived I did nothing about it and it made it really hard to not wish them all illness so they could see what it was like to feel so helpless. I was gobbling red meat, spinach salad, and almonds daily which seemed to do nothing and I was practically crawling up the stairs cos I couldn't walk and I was 100% completely suicidal. In my paranoia, I know I questioned all of my friends because of the actions of a few.
I just couldn't live that way anymore.
But I didn't give up and treatment day came and one week later I looked back and realized that for the first time in 2 years, I had slept four nights in a row. I sobbed in complete thankfulness. In another week, I could climb the stairs with both legs and my legs stopped cramping at night. My heart stopped pounding. It took another month or two and then I noticed that I started to care again. I no longer cared if others cared or not. I no longer needed medication to sleep or to concentrate. My hair started to grow again. My nails started to grow again. I gained more weight, of course, but I found myself again - the me that wasn't a weakling, the me that wasn't a victim. I cried a lot out of sheer happiness.
Intravenous Iron treatment saved my life. I still have fatigue but nothing like before. I feel really wasted after each cycle for a couple days but then I'm better. It's been almost a year since my treatment and I'll probably have to have one sometime in the next couple of months but at least I know what it is and at least I know what will help. At least I know I can beg for a hysterectomy someday.
If you are a cyster (or anyone) who has heavy cycles (Menorrhagia) or gastrointestinal bleeding, you are losing your vital life essence. You are losing yourself. Get yourself checked out!
Also - don't settle for bad friends. No matter how scary, you can find new ones at any age.
There are some helpful websites below.
http://www.thedoctorwillseeyounow.com/content/nutrition/art2046.html
http://www.cdc.gov/nutrition/everyone/basics/vitamins/iron.html
http://www.webmd.com/women/guide/heavy-period-causes-treatments
http://www.medicinenet.com/script/main/art.asp?articlekey=46270&page=2
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