Iron Infusions & B12 Shots

I have gotten 2 out of 5 of my iron injections and I’m already feeling like I have more energy. Wahoo.  I’ve been down-right perky actually.  It feels good to almost have normal oomph levels.  Since testing my ferritin levels and finding out they were really low, I’ve asked to have my Vitamin B12 and Vitamin D levels tested.  At first my doctor didn’t want to test my Vitamin D levels, but when my B12 came back low as well, she had a change of heart.

I am now signed up to receive B12 shots once a month for the next year. I’m so excited about the future of clearer thinking, energy and perhaps my metabolism will fire up too. 

The only issue I’ve had with the iron infusions is that my stomach is so torn up.  It makes me a little concerned about exercising because of the bathroom issues.  I already have so much trouble with my tummy from the Celiac and microscopic colitis, so this iron has been doing a number on me.  I’ve been trying to take more fiber, drink the probiotic shots and I’ve even taken the tummy steroids to get things under control.  Not ideal.  Steroid anything is bad for the Cushing’s, even if I am in remission.

My doctor has also agreed to refer me to another endocrinologist in San Francisco since my regular endocrinologist seems to have a deaf ear lately.  I really like her, but sometimes she gets in these funks where she won’t listen to my concerns and thinks I need to see a shrink instead of testing me for recurrence.  She then will go into that it’s normal to be scared that you’re sick when you’ve been sick for so long.  I get it, but my symptoms say something is going on.

I’m hopeful everything will normalize in the next few days with my digestion.  Until then, I’m enjoying my new-found liveliness.

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Celiac – The Second Round

Diagnosed with Celiac again. Yes, again. Two years ago I was diagnosed with Celiac disease. I had a negative blood test but my biopsy showed significant damage, so my GI doctor decided that I had Celiac. A year later I was seeing another GI specialist since I seemed to be having issues still and that doctor said that my Celiac result was negative for both blood and biopsy.  I was confused but he said the damage was from microscopic colitis and not from Celiac. He wanted me to use steroids to help with my gut when I would have a flare up from the colitis, however, this is a no go for me because of the Cushing’s disease.  I am really sensitive to steroids and start to get Cushing’s symptoms immediately no matter how small the dose and even if it supposedly is only absorbed in the gut (which is not true for me and my endocrinologist agrees).

Fast forward another year and my blood test for Celiac came back positive, but my biopsy didn’t show enough damage to be diagnosed with Celiac so my GI doctor said, “well, stay away from gluten if it makes you feel better but you don’t have Celiac so you really don’t have to stay away from gluten if you don’t want to.

 My primary care doctor and endocrinologist both had strong opinions against that and have marked in my record that I definitely have Celiac disease.  Their argument being that my GI is so messed up and I’m severely deficient in ferritin, probably because of intestinal damage making it nearly impossible to absorb vitamins.  Also, I did feel much better that year I was gluten free even though I was having other issues, so they said that’s my answer.  So, as of yesterday I finally resolved myself to having celiac disease and can no longer eat gluten.

This is harder than if I had been told without a doubt that I had Celiac, since there is question.  Who wants to give up bread and pasta if they don’t absolutely have to?  However, I have been feeling awful tummy wise for the last two years and it has been getting worse and been affecting my mood, clarity, etc.  A sane, normal person would give up gluten without a diagnosis just to feel better, but I’m special.  My daughter has been pretty mad at me for “goofing” around with not giving up gluten since she has been diagnosed with Celiac and has been gluten free for two years.  She has iron clad will power and once was told she couldn’t have gluten, she never touched it again.  She is 13 years old and much smarter and more mature that me 😊.

I am still on a quest to find out why I have such a hard time losing weight.  I am not convinced that this is the only thing wrong with me.  I am constantly in fear of my tumor coming back and my latest theory is that it is back or in another place and I have cyclical Cushing’s disease and that is why sometimes my results are abnormal and then they retest me and they are normal.  I also have Hashimoto’s disease and having a thyroid problem does not help with weight issues either. 

Lately I have been able to find other people that have had Cushing’s disease online that have been successful at losing weight.  This is so encouraging to me since in the past I only would find people in remission that have remained at least a bit chunky.  Until this week I had never found anyone online that was skinny or fit.  These people that I did find are about 10 – 15 years younger than me and didn’t have Cushing’s as long as me, but I still remain hopeful.

Stay tuned on my journey.  I am determined to get my gut working without pain and bloat.  I can’t wait to be fit and as healthy as possible.  I am going to get toned and tight, even with leftover Cushing’s issues and thyroid issues and I’m excited for my journey to contine.

5K and a Huge Milestone

When I signed up to run the 5K with my 9 year old daughter I didn’t think it was a big deal. I knew it would be hard because I hadn’t trained and it’s been over 6 years since I have been able to run. But, when your daughter asks you to be her running buddy, you do it!

It was hard and I ached all over, especially mile 2 that was all uphill. But, I was so excited to actually be involved with one of my daughters and fully immersed in an activity that she enjoys.  After the past few years of missing out in my kids lives because of illness, it felt amazing to jump back in and be present.

The entire next day I felt like I was in a car accident. Some of it had to do with the stocking of shelves I had to do for 7 hours at work after the run, but it was pretty painful. It’s day 3 after the race and finally my muscles feel okay but my hips still hurt.

The added bonus to running with my 9 year old and supporting her was the emotion I felt after I finished. I wasn’t expecting the feeling of accomplishment. It was such a surprise to me. I thought back at how far I’ve come since my brain surgery and realized what a huge accomplishment it really was to have completed the 5K. It’s been years since I’ve run and I had completed it…without dying or needing medical attention. It’s real! My body really is healing.

This year has been a huge turnaround for me. In February it will be my 3rd Brain-aversary and JUST this year is when I have started to feel normal. And, more than that, I have actually felt healthy. I’m sure that some of it is because of the Celiac Disease diagnosis and now being gluten free for the past 7 months. I’m well on my way.

Stay tuned since I have had elevated C-reactive Protein results and my doctor now thinks I have another autoimmune disease that is yet to be diagnosed. Hopefully all will be well and I won’t be the girl that collects diseases.

Concussion Time

This sucks!  A few days ago I fell in my mess of a garage and hit my head on a bracket that was sticking out of a cupboard.  It hurt like hell and apparently gave me a concussion. My head is pounding and it’s hard to concentrate. I’m dizzy and nauseous, but it makes me grateful for my health. It is all too familiar to have to lay down and rest and do nothing; to not be able to think clearly. I do not miss any of my sickly days and I can’t wait to get better and move on with my normal life.

Unfortunately, until I get better I cannot train with my youngest for her 5K race that she is so excited for and I may even miss out on my first girls trip. But, it is another lesson for me to slow down and be grateful for how far I’ve come over the last 7 years. Hopefully I will feel much better in the next few days. I can’t wait!

I’ve been GLUTENED

I’ve only read about this until today. Went to a Mexican restaurant famished and carelessly ordered without questioning ingredients or how the food was made. Rookie mistake I’m sure. Almost immediately I felt very foggy like it was hard to concentrate and started to get really tired. I barely remember the drive home and I feel asleep for a couple of hours. I hardly ever nap. I woke up groggy and achy like I was coming down with the flu. My head is pounding. I guess this is what I get for being careless. I am even more convinced that Gluten is the enemy and it’s not good for anyone’s body. It acts like a drug and that’s scary.

A Very Curious Saleswoman

Today I went to Macy’s to pick up some new make-up from Benefit that is gluten-free.  I asked to see the box that the make-up comes in so I could check for gluten in the ingredients list.  The woman was surprised and asked if my allergies were really that bad that I have to watch for gluten in things other than food. I told her that I have Celiac Disease and that yes, I have to watch for gluten in all products in case I ingest them and the still unknown of products potentially absorbing into my skin. She was amazed and had tons of questions all of a sudden. She went behind the counter to pull out a cosmetic dictionary, a thing I didn’t even know existed. I told her that I had questions about the tocopheral acetate (vitamin E), because it can be wheat derived. We looked it up and learned that the version Benefit uses is vegetable plant derived and free from wheat. She was so excited to be learning something new and I was relieved that someone was so willing to help me and make sure that I was going to stay safe.

After ringing me up she continued to have lots of questions; asking me what sort of symptoms I had, how many times I have to use the restroom and what kind of pain I felt after eating. She kept saying I’m sorry if this is too personal, but that her boyfriend is almost always in pain after eating. She wanted to know how I was able to be diagnosed and what had I asked for as far as testing. I let her know that I am pretty well monitored because of having a brain tumor removed a couple of years ago. She told me that she needs a new endocrinologist and I let her know that there is a great one right down the street. I told her the name of my endocrinologist and gastroenterolgist so she could make an appointment for herself and boyfriend. It’s so funny how you meet people and connect and can help someone out. I’m grateful to be able to provide information to anyone in need and feel blessed when someone else shares their knowledge with me as well.

On another note, this is my delicious, quick lunch! Prosciutto, sharp white cheddar cheese, arugula and Annie’s chive and lemon dressing. Make sure you check your packaged meats to see if they contain gluten.

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Just a Little Blue Today

Today is a bit rough. It started last night. I really try hard to not feel sorry for myself. Unfortunately, I’m human and sometimes just one extra thing will set me over the edge and I spiral down and feel sorry for myself, and feel like I’m never going to get better or be a healthy person. My eyes are puffy from crying last night and I can’t help but wonder if I’m coming off of my anti-depressants too fast and that is why I had a little crying meltdown last night. It leaves a blue little cloud lingering and you just feel sad and a little off. Hopefully the day will get better.