Tuesday, March 18, 2014

all about me.

i thought it would be a good idea to make a list of the illnesses i have and a brief description of what they are and the symptoms i have from them, as a reference point for anyone reading the blog (and also for my own progress notes).  if you have any questions, feel free to ask.  remember, not everyone has the same symptoms even if they have the same disease/illness, because our bodies are all different!

  • interstitial cystitis -- i was diagnosed with this in april of 2012, and this is what started everything off.  i almost always feel like i have to go to the bathroom, even when i don't.  "normal" bladders can hold about 700 cc's of fluid before they absolutely have to go, mine can hold about 250-300 cc's before it's bursting in pain, due to scar tissue restricting its ability to expand properly.  i go to the bathroom about every 45 minutes, and when i am having a bad day, i go about every 15 minutes.  sometimes i pee chunks of blood, and sometimes it burns when i pee, like there is fire coming out.  this is the main thing i have to take into consideration when going out and the main thing that keeps me housebound, along with my fibro, because of the frequency with which i have to go to the bathroom.  i have to make sure that wherever i go has a bathroom that is pretty much always immediately available for me to use.  this makes it difficult to take car rides as well, because the bumpy roads are extremely painful to ride on with a full-feeling bladder.  although it might seem obvious to just drink less liquid in order to not go to the bathroom as much, unfortunately if i drink less liquid, it hurts more when i do pee (it burns), so i have to drink a ton of water to dilute my urine, thus resulting in me urinating frequently.
  • ovarian cysts -- shortly before i was diagnosed with my IC, i had an ovarian cyst rupture on my left ovary.  at the time, i didn't think it was a big deal, but looking back, it may be what caused my IC to flare enough that i had to go out of work and on medication.  when it burst, it was so painful that i couldn't stand on my left leg at all, and when i sat down, i had to lean to the right so there wasn't any weight on the left side.  i ended up in the ER to get strong painkillers and even then, it was almost 3 weeks before it was fully healed, even though a normal one takes about a week or less to heal.  i continue to have many of them on each ovary all the time, not just during my period which is typical, and have also had two abnormal pap smears in a row, resulting in a colposcopy.  my gynecologist wants to do a laparoscopy because she suspects i have endometriosis due to my regular, abnormal bleeding, but i am waiting until my other medical issues are more under control before i have the procedure.
  • ocular migraines -- these are different from regular migraines in that they are more similar to a stroke than a typical headache.  the first symptoms i get are a shimmering in my left eye, or splotches in the direct center of my vision.  it quickly progresses to a sharp, intense stabbing pain in the left side of my face, followed by the entire left side of my body (leg, torso, arm, tongue, face, mouth) going tingly and then numb.  no medication or any remedy helps it go away or make it better; i usually take ibuprofen around the clock (4 pills every 4 hours) just to make me sleep through it until it is over -- usually 12-16 hours later. for the 24 hours following my migraine, i feel on the verge of one constantly, my eye and head feel weird (no real way to describe it), and i have trouble focusing and just feel very out of it. i get about one of these per month.  lately i have also been experiencing strange visual auras without headache, including multi-colored bursts of light in my vision, waking up to see spots covering my vision, patterns look like they're moving, spots of zigzag lines in my vision, clouds of flashing lights, etc. my neurologist thinks that i have some brain lesions because they don't really follow any pattern and have come on suddenly, so i have to go for an MRI in a few days to get it checked out.
  • TMJ -- when i was a senior in high school, i got in a head-on car accident where i totaled the car.  it was a pretty bad accident -- roof collapsed, airbags went off, frame was bent, entire passenger side crushed in, etc. and i am lucky that i escaped with what i did: a torn MCL on my left knee, and TMJ from the airbag hitting my face.  i have the snapping and clicking of a typical TMJ case, and a lot of pain.  i wear a mouthpiece at night that prevents my teeth from coming together and gives my jaw relief, and sometimes i wear it during the day if i'm having a lot of pain.  i notice it especially if i am in a very social situation that i have to do a lot of talking in, or if i laugh a lot on a particular day, because it stresses the muscles.
  • fibromyalgia -- ohh, fibro. such a lovely invisible disease... NOT! fibro is truly awful because there is no real explanation for why you have it or what parts are affected, and no real tried-and-true method to get relief from it.  it sucks.  besides my peeing problems, fibro affects me the most, i would say.  before i got sick, i was very active, always on the go, going out about every other night or so, very social.  now, i can be out for about 4 hours, 5 hours max at any given time before i am just... done.  exhausted, and in a ton of pain.  and obviously, i can't do some of the activities i used to do, because they are just too much on my joints (and my heart, but more about that in a second). ironically, daily exercise is what is recommended most to relieve the symptoms of fibro, but (at least in my case), daily exercise is sometimes the #1 hardest thing to try to do.  there are many "trigger points" in the body that one has fibromyalgia pain/discomfort in, and not everybody has the same ones.  some people experience mild pain, while others can experience a stabbing pain simply from someone running their hand over the area. in my case, i have mild/fleeting pain in my fingers, wrists, elbows, and ankles.  i have moderate pain in my toes, shoulders, and neck.  i have severe pain (the kind where just running your hand over it hurts) in my lower back, hips, and knees.  so pretty much any activity i do, at least one of my "severe" category joints is affected, since they are my core moving joints.  getting out of bed in the morning is quite interesting.. it takes me about an hour between the time i wake up and the time i can actually get out of bed, because of the stretches i have to do and just moving my body enough to get my muscles limber to be able to sit up and get out of bed without squealing in pain and being super stiff. if i don't get my time to do my stretches, it's not a pretty sight.
  • inappropriate sinus tachycardia --  i found out i had this last summer.  it's a hard condition where there is an abnormality in the way your adrenaline is released, and too much is released at one time, sending your heart rate up to really high rates for no good reason.  there were times i would just be sitting on the couch watching tv and my heart rate would be 140-150 (a normal person's heart rate is between 60-100).  i was attempting to do a few simple yoga poses with a yoga ball, and my heart rate shot up to 220, so it is very dangerous and makes it hard to do much cardio activity. because there is anatomically nothing wrong with my node that releases the adrenaline, the only way it can really be controlled is through beta blockers. there is an option of having is ablated (where they send a balloon up through your thigh to burn part of your heart), but a high percentage of people end up having too much burned away and immediately have to have a pacemaker implanted, so there is a high risk.  the beta blocker is helping somewhat.. i am on the maximum dose per day, and my resting heart rate is still about 100-110.  so, it's lower, but not very good, still. 
  • atrial septal defect -- i actually didn't find this out until about two weeks ago.  when my OB/GYN wanted me to have my laparoscopy, i needed cardiac clearance because of my IST.  when i got my echocardiogram, they found out i have an atrial septal defect, or a hole in the heart.  it is a congenital heart defect, meaning i have had it since i've been born.  it is a hole between the two upper chambers of my heart, which essentially messes with how oxygenated and unoxygenated blood are delivered to the lungs and body, and they are mixed (that's a really simple version of it!). it explains a LOOOTT of things that happened when i was younger, and why i have been feeling so short of breath lately and having such chest pain.  they thought it was just the IST, but it is obviously because of the hole.  i have been feeling like i can't catch my breath, having pain and heaviness in my chest, get very tired very easily, plus my heart rate goes up super fast with the IST, so i've kind of been a mess lately.  i am just waiting for the insurance to approve it, and then i can have a transesophageal echocardiogram -- they put you under anesthesia and insert a scope through your esophagus in order to view your heart and it's flow and function better.  this will be able to tell the doctors how big my hole is and if i can get it fixed through catheterization, or if i will need open heart surgery.
  • IBS -- probably the most common of my problems, IBS is also known as irritable bowel syndrome.  basically, i have diarrhea all the time, i am almost always bloated, and i get really bad pains in my stomach that i like to call death pains because they immediately make me drench with sweat and i can't focus on anything else or even breathe, they hurt so bad.  they are followed by an explosion on the toilet, which is so great.  woohoo!

so there you have it.  that's all of my illnesses in a nutshell.  i don't say all of this for your pity, by the way.  lots of you have it worse than me, i am sure of that.  i just want people to see that those of us who don't "look sick" are fighting battles that are just as bad as those of us who do, and judging us for our appearance isn't fair.  i also know that some of you can sympathize with the symptoms i list, and i want you to know that you're not alone! other people go through what you go through, too -- me! and maybe you know of things that i haven't tried that can help me, and maybe i know of things that don't work for me but might work for you and we can help each other out. isn't that what life is all about?! :)

my upcoming posts include foods that i have found help my body, reviews of this month's ipsy bag, and a look into things i'm loving this month! stay tuned!


  1. I noticed that you are on instagram so I checked it out. After reviewing same I found it odd that you had to leave your employment in April, 2012, because you were so ill that you could not work and yet you were traveling and out and about continuously.

    1. I appreciate you taking the time to look at my photos and comment on my blog, and it actually brings up a really good talking point. The illnesses that I have are frequently referred to as invisible illnesses because they don't show on the outside -- they deal with internal organs such as my bladder, heart, joints, etc. so you can't see them hurting, as you could with a person who has a limp, for example. I do travel sometimes, and I am "out and about". What you see on Instagram are the days that I am well enough to do those things. They make up maybe 1 or 2 days per week. What you don't see are the rest of the days of that week, or what it takes for me to be able to be out and about for those 1-2 days per week -- how long it takes me to get ready, how many times I have to sit to catch my breath or give my joints a rest, how I need help taking a shower, how I have to pick out just the right clothes that don't press on my bladder or show my bloating stomach, how I have to load up on meds before I go out so I'm not in too much pain, how exhausted I am afterwards and how it makes me sick for days afterwards just to spend 3 or 4 hours outside hiking with the dogs. I spend most days housebound, sitting on the couch all day or in my bed, taking naps and resting, doing crafty things that involve me not moving around much so that my body can rest. But I don't post those things on Instagram.

      I understand completely where you are coming from, and it's easy to think that I am out doing things all the time because that's what my Instagram shows, especially because my feed doesn't show specific dates/times, only general times. But please try to remember that there is always a story behind a photo, and that things aren't always what they seem.

      Thank you for reading my blog and taking the time to comment! :)

    2. Has your GP ever talked to you about Briquet syndrome?

    3. I don't really think there is a need to review Briquet syndrome, as all of my medical problems are proven physical abnormalities and the basis of Briquet syndrome is that there is a deficit between the way your mind process your mental and emotional problems and how it takes it out on your body, usually with no physical findings to back up the complaints of pain or symptoms. I have had many tests that have all shown actual physical proof of all of my medical conditions, so they are all caused by something wrong with my body, either an inflammation, a malformation, etc. Therefore, there really isn't a reason to look into that type of syndrome. Thank you for bringing it to my attention and reading my blog, though!

  2. I was taught that imitrex is not suitable for someone with heart problems. Does your GP
    coordinate your medications with your specialists?

    1. I don't really see my GP much because all of my medical problems are pretty much specialist-required problems, but yes, my medications are always carefully monitored and cross-checked with my other specialists. I am taking the lowest dose of imitrex and only taking one per day, so it is not affecting my heart problem, but my doctors are keeping an eye on it. Unfortunately, most medications for migraines are not very good for those with heart problems, so any of the medications have to be monitored carefully.


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