Meet "The Records"

These are my medical records! The bottom binder has mostly everything... Surgeries, tests, doctor visits.... The next binder is my Heart medical records~ from the past 4 years. The next folder, the orange one is my military medical records from when I was a kid....They go up to about age 16. The blue folder is my notes and stuff. The next thin orange folder is my heart records from when I was a baby.... And the paper pack on top is the short version of my medical records and surgeries.


Yes! It's a lot! My Mom was smart enough when I was younger to hold on to the military records... And I have been gathering my records for about 6 years now. I recommend this to anyone. It's nice to have the answers to questions at my finger tips. It's nice to be able to pull out a records when a doctor wants to see them, or for when I'm telling them about a surgery, and they get that look in their eye that they don't believe me. It's nice to have this info at my finger tips, so when a doctor asks me a question, I can look it up. My memory is terrible, and I get confused easily.....I can't remember the last time I had a procedure done, or all the procedures I've had done for that matter. The only down side...... Is trying to carry them in the doctors office. LOL I normally only travel with the top 'paper pack'... the rest I leave at home.

But not this time. Tuesday I finally met with a Dysautonomia doc..... And I think this is gonna be good for me! Other than them running behind, the appointment went well. I had the most through exam I've ever had.....And October 1 I go back for a day of testing, Fun, huh!! I think there's gonna be blood work, EKG, response to temperature test, a breathing test, and something else that I can't remember right now. **I remember now... A skin biopsy! How could I forget about that?? LOL Then October 2nd, he wants me to stop all meds..... And well, It's gonna suck! I can't go a day without my heart meds. If I forget to take one at night, I definitely can feel it by the morning (actually most nights if I don't take my meds at a certain time, my heart is generally reminding me before I can go to bed)..... However they want me to come back in on the 8th for some more tests~ off my meds. I get it...... But I don't like it!!

So.... One problem they did find was with my eyes. They don't dilate very fast. So when I'm inside and go outside.... It's hurts my eyes...They water... and I can barely open them. It's always been like this.... That's why you can never find a picture of me with my eyes fully open in the sun...Actually I get joked over 'the faces I make'....LOL! I'll have to show you some of those, their funny! But it was nice that a doctor noticed it. Like I said, he was very detailed! He talked about my palpable thyroid and nodules... he noticed that I had breast surgery, and he even said he could feel a mass in each breast. Nice! ((I don't think they're anything to worry about...Just how it is with me.... but I guess I'll have to get that checked one day)) He inspected my mouth, talked about my gums....Which was kinda eerie for me....I don't like having people around my mouth....Hence why I haven't seen in a dentist in longer than I care to admit to.......'shivering from the thought of a dentist doing anything near my mouth!!' ...... And he was a nice guy! Didn't stress me out at all!! Woo Who!!! So....I'm back to waiting again, waiting for the first so they can poke and prod me and then waiting for the 8th so they can do it again! lol Fun, Fun!!

But I'm still smiling so all is well for now......
Right??

See ya Next Time:)

A quick update..

Went and saw my thyroid doc on Monday....had an ultrasound, and to our surprise, the questionable nodule has shrunk! The doctor asked me if I had been taken thyroid med, cause normally nodules only shrink on those meds, and I told him No. I did not go into 'nothing is ever textbook with me'....He'll figure that out on his own as time goes by. I don't have to see him again for another year, unless something changes. :)

I've been seriously tired for days. We're talking taking 8 hour naps, and then sleeping through the night on top of that. I think my body is just trying to catch up on all that sleep I missed out on this past summer. I dunno.....

And WORK........Or should I say the lack of WORK......Is driving me nuts. I haven't had a real job in a loooong time, and I've been starting to feel a little better here lately, But just can't figure out what it is that I can still handle. I still have daily issues with my heart rate, and BP fluctuating. Still can't stand or sit still for long periods of time with out everything going numb below my waistline. And speaking of Waistline.....I'm almost at 160 lbs!! Yes, I'm excited, I'm a tall girl, and when I was at my thinnest (128) I looked sick. My cheeks were caved in, and for the first time in my life my thighs didn't rub together when I walked.......However, I was always cold, and uncomfortable. Now that I've put on some weight, it doesn't hurt so bad to sit....I have boobs again, lol.....I know, Like you needed to know that....but when you lose what you had and then it comes back one day, You feel relieved! So It's a good thing that I've gained weight.
.....no more cookie dough for me! LMAO....I'm a sucker for cookie dough!

So...that's about it.
Until Next time.....

Well.....I'm not doing a very good job of keeping this blog updated, now am I. Don't worry, you're not missing much.....I've been trying to hang low, and stay under every ones radar. Plus I've had the kids everyday this summer, and they just wear me out:)

I did go back to the GYNs and she gave me a prescription for birth control.....and I have Not been able to bring myself to take a pill. I got the script filled, and it's sitting right on my dresser, but my mind tells me to flush them! I just don't want to go through the shift in hormones again........my heart doesn't like it, and I have a Big suspicion that it was the Lupron that crapped it out in the first place, so now that they're telling me to take something similar....I just can't. I do understand why they want me to take it though....they don't want any New cysts to develop on that ovary. But doesn't it seem stupid to keep my ovary because I need those hormones, if I'm only going to shut it down?? I dunno??? I'm kinda just over it, ya know!

Next month I have an appointment with someone who specializes in Dysautonomia, and I'm excited! It will be nice to talk to someone who will understand what I'm talking about. And hopefully he can help me make a better decision about the hormones........

Tha darn cyst is still there!!!

Thought I'd update on a few things....

Finally adjusting to my up'ed dose of medicine, and finally at the big dose......Still feeling a little groggy in the morning~ but I can handle it.

Went it for my follow-up ultrasound on my ovary, and that cyst is still there. It's been there for about a year now, and I'm thinking from what was said the other day, that they're gonna want to go in there and get it. I have drug this on for as long as I could, and it may now be the time for me to surrender. I only have one ovary left, and I'm not ready to part with it yet....but sometimes, you gotta do whats right.......and I guess getting this cyst (which is now bleeding into itself) bothers them. Well....to be honest, it bothers me too~ Pretty darn painful at times, but pain is something I can deal with, most of the time. I go back in 2 weeks to talk to the doctor. In September I meet with a new specialist, and I'd really like to talk with him before I go in for surgery. I have questions that these doctors can't answer...I hate it when you ask them something, and they say they don't know> Very frustrating...They are suppose to know everything, lol!!!

** And my nephew will be here any day now. That's what I live for, Family....and I've been waiting a long time to be an Aunt! Hopefully, it all works out, and I can be there to hold her hand through this! 2 weeks till her due date!! WooWho!!!

Thanks for listening

OK, so yesterday I still felt like a brick, spent the morning trying to keep my eyes open, then around 2, I feel asleep...slept till 9:30, then back asleep again at midnight. So either this double dose of medicine is kicking my butt, or I just needed some sleep. Today my eyes are a little more open, but I still feel groggy! Definitely feeling an afternoon nap coming on.....

...upped the dose on my Amitriptyline to 50mg last night, and woke up feeling like a brick. Yuck! Not sure if I want to take it to 75mg like the doctor suggested. Will have to wait and see if the morning yuckies wear off after a few weeks. I hate feeling like I'm glued to the couch...... Zombie Mode is another way of explaining it......

Well....Things went well today.

Saw my head doc this morning.... Learned that I really need to go into my symptoms more. Realized that I've just been going with the flow for years. I have issues with several body functions, and well, it's just become normal to me. I've had the proper work ups done, so I know I'm not dying, and that helps relieve some of that stress...But my symptoms are still here. I've gone through pain management therapy, and physical therapy and learned a lot about dealing with pain. I can't take any of the 'good pain killers', unless I want to spend the night vomiting, and when your in pain, throwing up doesn't help, neither does an IBS flair- which can also be a result of taking any pain medicine. I take hot/warm/cold baths, use a heating pad, a TENS machine, massage; trigger point rubbing, Sleep.....and then occasionally use Tylenol, Valium and recently Darvocet. Although I don't think I've taken one of those since last weekend, but then again...I've had the kids~ and I don't like 'being knocked out' when they're all here. OK...so I need to stop rambling again and get to a point. At some point I need to find a starting point, and work way way form head to toe, and get those 'symptoms' written down for someone to understand. Fun, huh.... I have tried this in the past and normally only last a few days recording things because I Hate Reliving It!! At least that's how I feel when I have to write about what happened.....then again, sometimes it can be therapeutic. So.....

I went to see the new GYN today, and I think I may be able to work with her. She's ordered another ultrasound......2 weeks from today, then I have a follow up appt. a month from then. I think she understands where I'm coming from with not wanting to go back on Hormone therapy, and understands my need to try and keep my only ovary. I just turned 31 this past April, and I'm not ready for menopause yet. And I don't think my body will handle that too well~ thinking it may affect the dysautonomia. However she did ask me when was the 'last time someone scoped me'......and I didn't really realize that it has been 5 years. Actually the last time someone looked inside was when I had that abscess removed, and the Foley ball temporary put in. Wonder what's happened in there since then? So...as usual...time will tell. Oh...and she upped my Amitriptyline......can't remember why exactly.....but I'm off to find out, lol.

**OK, so Amitriptyline (of which was originally prescribed to me for migraines) can also be used for chronic pain that is nerve related, anxiety disorders, and a few other unrelated (to me) things. So I'm assuming she's upped the dose to control my 'chronic pain'. At least that's my opinion. **Other uses: Carpul Tunnel Syndrome , IBS, and internal cystitis may all be treated with amitriptyline.
and Due to amiptriptyline's ability to induce sleepiness, it is sometimes used to treat insomnia

See ya next time:)