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but you don't look sick! (very long post)

Since I've been asked countless times "what is wrong with me", I thought I'd write it all out. Not for sympathy, but simply to answer the question. Not for solutions, I'm tired of well-meaning people trying to offer me solutions when I don't even know what the problem is in the first place. I don't want a solution, I want to be able to say "I have _____" when asked what's wrong with me. Honestly, I don't know what is "wrong with me," I have no medical diagnosis. I have real symptoms that seem to be getting worse, but no doctor (so far) can give me an answer. So in order to answer the question, I'll just tell you about my symptoms. There are several, you've been warned. And no, I usually don't "look sick." Except maybe when I have the flu or other infection and am running a fever, but on a daily basis? I look normal. Although, what exactly does "sick" look like? It's more than just not being able to get up in the morning, it's more than just being tired.

I have IBS (Irritable Bowel Syndrome) which, to me, is a doctor's way of saying "We don't exactly know why your intestines keep freaking out,". I've had it *officially* since 1996 (the first time I actually had heard of it) when that's what my doctor at the time told me I had. He gave me tagamet (which I'd already been taking ... when I was about 15 our family doctor told me that I had too much acid in my stomach which was causing my frequent stomach aches) and told me to stay away from fried foods. If you don't have IBS or don't know what it involves, I'll give you a brief description of what I deal with: when I first had it I only got "attacks" in the middle of the night. I would wake up with severe intestinal cramping. I'd sit on the pot for awhile and proceed to be attacked by the chills, then the sweats and then nausea. The pain was so bad I'd beg the good Lord to take me home to Heaven. Then I'd have diarrhea and the pain would go away and I'd be left with an empty feeling and a dull ache in my gut. And that was that. Usually only lasted about 20 minutes or so ... they progressed to lasting hours before I'd "go" and have relief. Now, I have attacks randomly, doesn't matter what I'm doing, what I've eaten. Mostly, I get them in the morning. Sometimes they are less severe, but I can't tell you how many times I really did pray for death because the pain was so unbearable. And it's paired in between with constipation. No doctor ever even thought to give me a referral to a GI or any medication to control it, I've been put on anti-depressants and acid reducers, so far, neither have worked. On top of the IBS I do have stomach pain and other abdominal pain and acid reflux. I had some symptoms of problems as a kid, had stomach aches and had "issues" with corn, but it got worse after I had my first child. I also have a lot of nausea, usually starting shortly after dinner and gets worse after I go to bed. Right now, I'm taking Levsin for my intestinal pain - it's not working as well as I'd like.

Other symptoms I experience: headaches (been getting frequent headaches since I was a teenager); sometimes migraines, sometimes tension, sometimes stabbing pain in the back of my head that is so severe I twitch - I can't have anyone touch the back of my head (near my neck) it just triggers the pain. Legaches (not cramps - I can't tell you how many times I've tried to explain to the doctors that my legs are NOT cramping); I've been getting legaches since I was about 8. It's a deep throbbing ache, usually in my calves, sometimes in my thighs, sometimes both - it used to be only one leg at time, now it's both. Tylenol and heat do help, but lately, my legs hurt constantly - and it's moved to my joints. My knees aches and sometimes feel like there is a stabbing pain in the middle of them. Sometimes it feels like someone stuck a syringe in them and is inflating a balloon in there. The joint pain has spread to my hips and my elbows. I cannot keep my knees or elbows bent for more than a couple minutes before they start to really hurt and the pain will spread up my leg or arm until I straighten them out. The pain is much worse when it's cold or rainy. I have back pain as well. I have pain in my ribcage, sometimes feels like someone beat the tar out of me, sometimes feels like I'm being squeezed and sometimes it feels like something is inside, pushing out. I have random nerve pain usually worse when it's cold - underneath my arms (from my armpit to elbow) and inside my thighs, it's a weird burning type pain that is really had to describe, but it hurts to touch it. It's not hot or red, just hurts. I don't have that very often though. The legaches and joint pain I have all the time. Headaches are frequent, but not ALL the time. I'm easily hurt - you poke me and I'll say "ow" and yes, it really DOES hurt! I'm taking Tylenol for the pain. My doctor said if my GI tests come back normal, she'll refer me to a rheumatologist. I think if my GI tests come back normal, I'll cry.

I'm usually cold and my hands and feet are almost always cold. (Ask Jack about my feet in the winter! *giggle*) I'd say I'm cold when others are not. But lately, I've been getting these "hot flashes" where I'm suddenly extremely hot when it's not hot out. I cannot tolerate cold. If you touch my legs with something cold, I will get severe pain. And recently, if I'm working with something cold with my hands, I will get pain in the palm of my hand and it shoots up my arm to my elbow. Like if I'm making hamburger patties and the meat is really cold ... I'll have to put it down and let my hands warm up and the pain usually subsides and I can continue working.

I'm tired. Mostly, I think, because I don't sleep well at night. I've tried using Benadryl or Tylenol PM and they both give me nightmares, so I don't use those anymore. I take Melatonin, sometimes helps, sometimes doesn't. ALthough, my mom gave me some Alteril and that does help. I have weird dreams and feel very unrefreshed when I wake up, so most of the day I'm really tired. I'm easily drained - going somewhere will take me out for the day and sometimes the next. I have "brain fog" ... sometimes I can't think of a word and it almost hurts my brain when I try to think of it. I often say the wrong thing, such as "Please shut the toaster," when I meant to say "Please shut the door," .. my kids think I'm hilarious.

Mornings are the worst for me, I generally wake up with IBS pain and a headache and things don't settle down for a few hours, if at all. I spend quite a bit of time in the bathroom or finding some sort of pain reliever in cupboard. Depends on the day.

I've been testing for numerous things and they've all come back negative (auto-immune diseases, inflammation, anemia, vita-d deficiency, blood levels, etc - all *normal*)

So, if you know what's wrong with me, please contact my Doctor ASAP. LOL

I know there are so many people out there that have worse problems than I do and I'm not saying "oh please feel sorry for me!" I'm just answering the question I get asked a lot. I don't want to stand there and tell you all this - it would take forever. So, now you know "what's wrong with me," : I don't know. If I get an answer, I'll let you know, but I'm tired of looking for answers.

i love it when a plan comes together

Ok, not really - just felt like saying that. :P A-Team Wednesdays, you know. Yes, I realize that it's Friday. It's been awhile since I've blogged so I thought I'd write something, but now I'm really uninspired.

The bottle of Miralax that is sitting on the counter is taunting me. Everytime I look at it I get nervous. It's humongous. Next week I buy the Gatorade to stick it in. And then on the 21st I get to drink it all. Oh joy. I am so not looking forward to these scopes.

Kids are back in school and so far, so good. So, it's only been 3 days, but still. Trying to think positively here. ;)

Well, that's all my brain can squeeze out at the moment. Be back later ~

so, i'm normal

Went in to see my NP today ~ I've been feeling sick and a friend suggested I may have strep. I do indeed! The last couple of years I've gotten sick a lot more than I usually have in the past. I used to never get a fever with anything ~ now I seem to have a fever more often.

Anyway, while I was there we went over my labwork. Everything came back normal. The only thing that wasn't normal was my *good* cholesterol, but she said she wasn't really worried about it since my *bad* cholesterol was fine - she said they kind of balance each other out. I was on the low side of normal for my blood count, but nothing she was concerned about. So, I'm left with more questions than answers. She said she'd like to wait until I have the scopes and see what the results are from there. Then I may have to go on to a rheumatologist since I have a lot of joint pain and it just seems to be getting worse. My RA, Lupus, Thyroid, Definiency, ANA tests all came back normal. She didn't say whether they were high or low normal, just that they were in the normal range and didn't cause any concern. But, she didn't say I was crazy. She said that it could be Fibromyalgia, but she wanted a rheumatologist to make that decision, since that's their area of *expertise*. So, I don't know how to feel. Of course, I don't WANT to have a disease, but I WANT to have some answers. I guess we'll have to wait for the scope tests - if they come back normal too, I think I might scream! They might have to put me in the crazy house then! HA!!

She didn't have the results of my heart monitor testing back yet, though, so she's going to call me about that ~ I told her I was pretty sure that I didn't have any palpitations during the test, so if it comes back normal, she's going to talk to the Dr. and see what he thinks. They have the *event* monitor that's a 30-day monitor.

Tell me why it is that when you're sick, your children don't seem to notice. I could be dead on the floor and they'd still be asking me to do stuff for them. *heavy sigh* Just because I'm upright doesn't mean I'm WELL. Oy.

Blog Hop on Follow Friday~

Ever onward ~

Artwork © Alan Lee

Let's try this again ~ honestly, blogger hates when I try to add photos.

The Road goes ever on and on
Down from the door where it began.
Now far ahead the Road has gone,
And I must follow, if I can,
Pursuing it with eager feet,
Until it joins some larger way
Where many paths and errands meet.
And whither then? I cannot say.
-JRR Tolkien, The Hobbit

Today marks the 3rd day of consuming gluten. My intestines are not happy about the whole thing. But, ever onward. If I don't have Celiac, then I think I'm at least gluten-intolerant. I can see a definite difference in how I feel going from GF to eating gluten again. Of course now that I'm trying to get some gluten in me I find King Arthur GF cookie and brownie mixes at Meijer. *laughs* Oh well. Such is life.


    The camera I want is available on Amazon for just under $500. Jordan has her "Dog Savings", I guess I'll have to start a "Camera Savings". I am now accepting donations. HA HA! ^_^ Of course, I don't NEED a Nikon, our Canon Power Shot is just fine, but it doesn't give you that awesome SLR photo quality like the Nikon will.  Check out Candy's article and photos to see what I mean. And believe you me, $500 is cheap as far as DSLR's go: check the Nikon website! (Be sure to view the "sample photos" - amazing!)

    So, I've added it to my Amazon wishlist ... along with the hundreds of books I'd like to have. I don't know, just makes me feel closer to it if I have it on a wishlist. Call me crazy, I already know it. ^_^


Gotta say, too, that school really can't start soon enough. The children are at each other's throats lately (ok like the last month!) and they need to get away from each other for a little while. And away from me, my patience left in July. Jesse has high school registration next week and then everyone has open houses on the 1st of Sept. AND Jesse has his final driver's training test tonight - if he passes, he gets his permit and can drive with a parent. SCARY! He'll have to drive with Jack, I think I would honestly have a breakdown if I rode with him!

The road goes ever on and on ....

Just the facts, Ma'am - TMI (Health update for those interested...)

Warning - this post may contain TMI (too much information) - read at your own risk. :P

Fun times visiting doctors. I'll try to stick to the facts and not complain so much; which is extremely difficult for me. I am a pessimist and a cynic and well, that's how I see things. I can, however, see the positives in things, but the negative tends to jump out first.

Ok, back to the facts. Aside from two dental appointments last week which left me with sore teeth and a visibly bruised cheek, I had an appointment to get hooked up to a holter monitor on Monday. Went fine, was a little uncomfortable to wear, but no biggie. Sadly, I had no noticable heart palpitations while wearing it - which was the entire reason for it in the first place! So, it will be up to my NP if I need to wear the 30 day even monitor (which is removable for showering and etc - and as soon as you have a couple "episodes" you can quit wearing it). I go back on September 3rd to discuss the results of the monitor and the bloodwork I had drawn on the 6th. (She tested me for many different things - Vita D deficiency, Thyroidism *either, autoimmune diseases *RA, Lupus, proteins, Anemia, and some other things that I don't know what they are.)

Next, I had an appointment today with a Gastroenterologist. Gave him my *list* of symptoms, all my moanings and groanings that I've had basically for the last 20 years. Pretty much started when I was 14 (as soon as my hormones kicked in). He said he feels that I probably just have really bad irritable bowel syndrome. Yes, yes, I was diagnosed with that in 1996 and I'm sure I've had it much longer than that. However, he said there are a few things that are somewhat concerning: that I have a lot of my *episodes* at night, that it's been getting worse, that I have joint pain (indicitive of Crohn's Disease) and bleeding. Yay me, I get to have an endoscopy and a colonoscopy. Hooray! Only not really. He said I could very well have Celiac Disease since the removal of gluten showed some improvement, but I could be not getting ALL the gluten out - so for the next month I have to eat gluten again. Fortunately, he prescribed some Levsin to help with the cramping. They will do a biopsy of my small and large intestine to see what (if anything) is going on. What bothers me, though, is that he said he was 75% sure that it was just IBS. I don't like having those scopes done on a 25% chance that there's something else. I don't have all the classic Crohn's Disease symptoms OR Celiac for that matter, but he wants to rule it out. I am most certainly NOT looking forward to having to do the prep for the colonoscopy - laxatives make my intestines cramp really badly and I can't take any drugs during it. And I get to drink two 64 ounce bottles of Gatorade mixed with Miralax ... needless to say, I hate Gatorade .... oh and they advise you on what to do if you get nauseous - I get nauseous at the drop of a hat, I'll be puking all the way to the hospital! I have the scopes back to back --- err, mouth to rear end --- I just know I'll be puking before and after the test. If you know me, you'll know how much I absolutely abhorr puking - I'd rather break my arm and leg than throw up. I asked if I'd be put to sleep - he said I wouldn't be aware of what was going on, but that doesn't really make me feel any better .... I'd like to be completely knocked out .... oh right, just the facts ....honestly, I need a lot of prayer - talk about feeling stressed out. :\

Pretty sure I'm gonna have to start a fundraiser to help pay for medical bills ~ *laughs*

ok, now where's the pizza ....

Mayo Clinic Information on Crohn's Disease
Mayo Clinic Information on Celiac Disease

I like Mayo Clinic's website best - presents the information in an organized, easy to follow/understand way.