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.

gluten free · Medical

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.

exercise · fitness · Medical

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.


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.


Off the Steroids I go…

After weighing the pros and cons I decided to come off of the steroids I was on for my microscopic colitis. It just wasn’t worth it. I had almost all of my Cushing’s syndrome and only one pro to using the steroids. My body has been through so much. Being back on the steroids was not fun at all. Because of the steroids it threw my body way out of whack and I had to start taking anti-depressants and anti-anxiety pills. I had weight gain, depression and sadness, greasy hair, pimples, round face, the hump was appearing on my back again, moody and irritable, bloated and uncomfortable, indigestion and much more.

It has been about a month since I’ve weaned off of the steroids. Finally I feel like the steroids are out of my body. The Cushing’s syndrome is slowly going away. The first thing that I noticed is that my hair isn’t greasy anymore. I had to wash it once or twice every day. Now I can go up to four days without my hair getting oily and gross. Also, I can wear my hair down. It’s not super crazy and curly and frizzy. I can flat iron it and it behaves all day.

Last week I had to go get an iron infusion since I am severely anemic. It took four hours for the whole IV process. Other than the time it took, it wasn’t that bad. I felt drained for a couple of days afterward but I was already feeling so tired from the anemia anyway. After talking to my Endocrinologist we finally came to the revelation that my health problems and issues with healing and catching everything is because of my extreme low iron levels. It always feels good to have an answer.

Yesterday I finally felt like I had more energy. Certainly not 100% yet, but a bit more. I stayed up an hour later than I usually do and I woke up a couple hours earlier than I have been on the weekends. I’m excited to continue to have more energy and get my health back. Only good things to come now.


Rough Start

My morning start was just not fantastic and it’s starts like those that remind me that I am a sick person. Ugh. I was busy chastising one of my teens and not paying attention while putting on my mascara and stabbed myself in the eye. Yes, that hurts. But for me, lacking enough cortisol to help me in a flight-or-fight or any kind of emergency/injury, I immediately starting throwing up. Yuck. It took about 15 minutes of constant heaving all the while trying to deep breath to calm my nervous system a bit and laying on the floor. Talk about dramatic. My body that is, not the real me. 🙂

Unfortunately I had to medicate to be able to peel myself off the floor and go to work. Not my favorite, but, it is what it is.

The rest of my morning has been perfectly splendid. The attendance lady is out today so I had to substitute for her most of the morning. I love interacting with all the kids, just stay back if you’re sick. I even had a parent ask how she could request that I am always at the front because of my cheerful demeanor and that it makes it so much more pleasant to deal with. So, yay. Warm fuzzies. I’ll take it.


My 2nd Brain-a-versary!

Today is my 2nd Brain-a-versary.  Which means I am in REMISSION and I live without my tumor and this horrible disease.  It’s an exciting day for me and it’s a sad day for me.  It’ more important than my birthday, as far as I’m concerned.  I’ve come pretty far since the day of my brain surgery but I still have a long way to go.  It’s hard to see how far I’ve come or even appreciate it when I feel so far from the real me inside and I’m still so fat.

From the time I came home from the hospital from my brain surgery I couldn’t walk from the car in the driveway to the door of my house without having to stop and take a break.  It left me winded and all of my muscles hurt.  I cried everyday for the first year.  I threw up every morning for 18 months and had nausea throughout most of my day for over a year.  I had massive blinding headaches that also lasted 18 months and were a daily battle.  I had severe anxiety and would startle easily.  I had to medicate myself at least twice a day to get through the workday.  It was so overwhelming to have to be around people and even speaking and reading was really difficult.  If I had to carry on a phone conversation for more than a few minutes I felt like I would jump out of my skin. I was so uncomfortable having to interact with anyone.  About 9 months after my surgery someone honked their car horn behind me and I jumped really high and started crying because it scared me so much.  My pituitary gland didn’t start working on its own until after a year and it still lags a bit.  Because of that I don’t release the right amount of cortisol to help me in a flight or fight response.

In the beginning, the stress of the TV turning on, someone turning on a light, someone coming around a corner would startle me and I would cry.  I had no strength.  I couldn’t even lift a gallon of milk for myself.  It was pretty frustrating to go from literally lifting a sectional sofa and putting it on top of my car, by myself, to not being able to pick up a hardback book.

My strength was fake, my energy was fake.  It was all from the tumor and most days I miss my tumor still.  As ridiculous as that sounds, the thing that was killing me I miss most days.  I felt like I could go and go and never get tired.  I slept maybe 3 hours a night.  I ran 9 miles a day 6 days a week and on the 7th day I ran 13 miles.  I loved it.  Other moms never understood and were always asking me how I do “it”.  I guess the “it” was never feeling tired and I could do it all.  I miss that.  It was about 5-6 years that I was undiagnosed with Cushing’s disease from what the doctors think.  Which means most of my adult life was living with all of this energy.  Now I feel lethargic compared to that.  I’m lucky to be able walk 2.5 miles.  If I do make it I have terrible shin splints that take forever to heal.

After two years I still have to sleep 9-10 hours a night and most mornings I wake up tired.  I can carry groceries from the car and I don’t wear out as easily.  At least I can go do an activity all day like a normal person.  I’ve lost 45 pounds since my tumor was removed but that was in the first 5 months and since I had to start back on steroids again my face is puffing out and it is almost impossible to lose weight.  I still have 40 pounds to lose.

But, I’m here. I’m alive. I get to see my kids grow up. I no longer have pre-diabetes, hypertension with scary high blood pressure, acne, rage, major anxiety, major amounts of weight gain in short periods of time, trouble healing and easy bruising.  The most I ever gained was 10 pounds in 2 ½ days and it was miserable.  Most of those cured immediately when the tumor was taken out.  I can sleep.  So, I’m grateful.  What does Joyce Meyer say?  “I’m not where I want to be, but Thank God, I’m not where I used to be.”

So, today I celebrate my accomplishments and remember that even though it might happen slowly, I’m getting there.