Behind These Prison Bars

No, I'm not really locked up in prison, I've never done anything that bad, but some days it feels like I live in a prison just the same.

My list of health problems keeps growing longer, thanks largely to the fact that I'm on steroids for my asthma, and it keeps getting harder and harder to manage. Here's the current list:

Severe, chronic asthma
Chronic Depression
Chronic Back pain
GERD – Gastroesophageal Reflux Disease
High Blood Pressure
History of borderline Hypo-Glycemia
Severe Food and Environmental Allergies
Accelerated Heart Rate
Migraines
Post Traumatic Stress Disorder
TMJ
Sleep apnea
Polycystic Ovarian Syndrome
Anemia
Kidney issues (I don’t have a name for it)

Treating all of these issues takes a three pronged approach. Medication, diet, and exercise. Sometimes I wonder if I get my migraine just from trying to keep it all straight! Each of these approaches has it's own complications as well.

Exercise is the hardest one. Every doctor tells me I need to get regular exercise, but can you imagine how hard that is when your regularly struggling to breath, have a severe migraine, or just plain worn out because your anemic? I was starting to be able to at least go for walks regularly before we went to Phoenix, but my body is taking it's own sweet time recovering from that trip so I haven't been able to get back in that routine yet.

Medication is a daily chore for me. Between all the medications, and the vitamins the doctors have told me I have to take, I end up taking about 30 pills a day. Yes, I said 30, that wasn't a typo. I have two pill boxes, one for morning and for the evening, and I sit down once a week to fill them all up. Usually takes me about half an hour. Often it involves making a note that I'm out of X medicine/vitamin and making plans to go get them.

Taking the medications is a whole other issue. Because of the GERD issues, and because I messed up my stomach with an intestinal parasite at age 17, I have to be very careful how I take my medication. Juice is necessary to help keep me from gaggin on the taste, and I need to have a full stomach. Often, in the mornings, I have to eat some before I take my pills and then eat something after I take them to keep from tasting them for the rest of the morning!

Then we have diet issues. Because of the severity of my asthma I'm not allowed to have any milk. Food allergies rule out another portion of the food world. Low sodium because of my blood pressure. No nitrates (a common meat preservative) because of migraines. No caffiene because of both migrianes and heart rate. I've also been trying to eat a semi-diabetic type diet because of the blood sugar issues (which the steroids exaserbate), but I just found out that's not enough!

Apparently my kidneys are leaking protein. Now, usually, this is related to diabetes, but it can be caused by other factors. My doctor is pretty sure that it's being caused my dependance on steroids. But we can't just stop the steroids because then I'd end up in ER fighting for my life trying to breath!

Here's the rub - the medication that would be best for helping my kidneys is apparently dangerous for people with severe asthma and allergeis. IE - me. So the next step is a visit to my allergist to have me tested to see if I can even think about taking the kidney medication. If I can't, then the only way to treat it might be my diet.

Until I'm on the medication, and probably after as well, this means I get to eat as much like a diabetic as possible. I can't just eat a "kinda" diabetic diet, nope, I need to go hard core. Apparently this will help reduce the stress on my kidneys by lowering the amount of sugars my body is processing and helping to keep my blood pressure lower.

Can you see why I feel like I'm trapped in a prison?

Some days the fight just feels like way to much. But I can't give up.

Sometimes My Life...

My Life is...

I found this button when I went to research this month's featured Etsy Blogger so I could write about her in my other blog. I instantly fell in love because it feels so true sometimes! Or not a soap opera then maybe a comic tragedy? Because it can certainly feel super-tragic at times, but I always try to keep laughing!

The latest update is that I'm apparently really anemic. We found this out because I finally got to go see a neurologist about my migraines earlier this week. He ordered a comprehensive blood work up which, among other things, meant we found out I'm anemic.

I was kinda floored when I first got the letter with the news. I mean seriously, come on, something ELSE is wrong with me? Now that I've had some time to think about it I'm much calmer. Yeah, I'm anemic, but the good news is that this treatable and it explains a lot. Apparently when your iron gets this low it can cause all sorts of neurological problems - which means we may have found the cause for why my migraines have gotten so bad these last few months!

It also explains why I'm always so incredibly tired. I figured I had good reason considering the sleep apnea, asthma, and migraines, but apparently I had even more reason than I thought! Speaking of the sleep apnea - the latest update on dealing with the Darth Vadar mask is that I haven't been. I can't wear it when I have a migraine because the pressure it puts on my face increases the pain of the migraine. *sigh* Hopefully I'll be able to start using it again soon, I was starting to adjust to it, and apparently I need all the rest I can get!

The other thing the neurologist did was he added several new vitamins and an herb to my daily pill regiment. I was NOT happy about even more pills, but I want the pain to go away, so I've been sucking it up. I've been adding them in a day at a time so that if I reacted to one I'd know which one it was. My body does tend to react to weird things after all.

Yesterday I added in Feverfew. Apparently it's an herb often proscribed as a natural treatment for migraines. I was pretty skeptical at first because it smells awful, even though it's in pill form! Good news is I only had a very low level migraine this morning, and nothing all afternoon! I don't know for sure if it's the Feverfew or if I just had one of my "lucky days," but I'm hoping its the nasty smelling herb because I would really love to have found something to ease the pain!

My Journey to The Dark Side

Yesterday my dear hubby and I went and picked up my very own CPAP machine. If you haven't been following my journey dealing with sleep apnea go here and here to read my first posts and get more info about apnea and the CPAP machine :)

I've been calling it my "Darth Vader mask" and the jokes have been FLYING about me joining the dark side! In reality, it's super quiet, none of the classic Vader breathing. Having the mask over my face makes me feel like I'm a cyborg or something though.

My dear hubby is being incredibly supportive. He knows how emotionally draining this adjustment is for me, and he kept telling me his sexy-cyborg last night :D Gosh I'm lucky to have a hubby like him!

Even though I was really tired last night (I'd been having asthma problems) it still took me about 2 1/2 hrs to fall asleep last night. Then I woke up a good hour and a half earlier than I usually do. Can you say - tired? I did manage to take a nap this morning, but I was a good girl and used the machine, and so I woke up yawning.

I could easily go to sleep right now, but I don't want to mess up my night sleep schedule and make things even harder tonight, so I'm sticking it out :)

The lady who set us up with the machine said that the average person takes 3 months to adjust to their cpap machine. I can believe it! The closest analogy I can come up with is that it's like wearing a brace, cast, or head gear. You've got a foreign object on your body, so even though you sleep, you may not feel super rested when you get up. I'm sure that it's better for my lungs, so I'm determined to make it work, but the next few weeks/months might be hard. I'll keep you updated!

Introducing....the Darth Vader Mask!

Remember how I told you about my first sleep study? Well, the results were that I do have moderate sleep apnea, and apparently that means I'm not really getting that much rest at night! So we scheduled a second sleep study for last night, and they tried a "darth vader mask" on me.

Ok, so that's not really what it's called. It's called a CPAP Machine, which is short for continuous positive airway pressure. Basically, when a person experiences sleep apnea (stopping breathing in their sleep) it's because their body relaxes so much while their asleep that their airway starts to collapse. The CPAP machine provides positive air flow that apparently acts like a splint in your throat, so you don't stop breathing!

Well, getting a good nights sleep sounds great, but it's going to be HARD to do with that mask on! Fortunately it's not really as loud as Darth Vaders breathing, but that's what it reminds me of anyway. It was pretty uncomfortable - and I woke up with a really dry throat and a face. The nurse said they could adjust the humidty levels in the air flow and that would help, so I'm trying to think positively.

I'll be hearing back from the sleep doctors office again soon and I'll go into to get my own machine to take home and try to get used to - I'll keep you updated!

And You Expect Me To Sleep?

Can you imagine sleeping with all of those electrodes attached to your body? I sure couldn't! I knew that my doctor had ordered a sleep study, and I kept trying not to think about it because I was worried about sleeping.  Wouldn't you be?

I received a phone call mid-afternoon telling me that they had a cancellation for that night - would I like to take it? I was flustered, but I knew it was necessary, so in I went! Seeing the actual set up didn't do much to calm my nerves - there were wires all over the bed!

Fortunately, the nurse who did the set up was a wonderful lady who was perfect at putting me at ease. Still, as she attached 5 electrodes to my scalp, two to my forehead, two to my chin, two to my shoulders, two to my legs, a mic to my cheek, two bands across my torso, a monitor to my finger, and an oxygen flow tube in my nose, I couldn't help but thinking, "And you expect me to sleep?" Ironically, I slept about as well as I usually do!

Apparently I had a restless night with lots of movement, snoring, and multiple sleep apnea episodes.  None of this really came a surprise, but it was interesting to have in confirmed.  I'll be learning more about what the doctors want to do to treat me in a week or two.

According to webmd, sleep apnea is "when an adult regularly
stops breathing during sleep for 10 seconds or longer. This may be caused by
blocked airflow during sleep, such as from narrowed airways. Or it may be
caused by a problem with how the brain signals the breathing muscles to
work."

Possible treatments include medication, oxygen masks, and even potential surgery.