tag:blogger.com,1999:blog-4820245967412123232024-03-13T20:55:23.279-04:00Let's Make LemonadeDictated.....But Not Read! LMAO!!
My Crazy journey with Dysautonomia...by the Professional Patient!Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.comBlogger77125tag:blogger.com,1999:blog-482024596741212323.post-33431098041724039702013-11-21T11:45:00.001-05:002013-11-21T11:45:48.314-05:00New listing in EtsyFinally got the potting table listed in etsy.. <div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM1FdFCqvpmcwKBR1n2EQAULrsA-0J3COARIGZ74t2bflCNzSgba5j1xozYn_XckPTkxAg91ZzwJFudGvG1Ved8eKbbzEV8LGFQKre48Bdts1cLG2nvkSg0DquEguFYhIIdOovFPfaWAA/s640/blogger-image--1822849303.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM1FdFCqvpmcwKBR1n2EQAULrsA-0J3COARIGZ74t2bflCNzSgba5j1xozYn_XckPTkxAg91ZzwJFudGvG1Ved8eKbbzEV8LGFQKre48Bdts1cLG2nvkSg0DquEguFYhIIdOovFPfaWAA/s640/blogger-image--1822849303.jpg"></a></div><br></div><div class="separator" style="clear: both;">I almost don't want to part with it.. But I've got to clear out this house so I can make room for new stuff.. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I've also reduced the prices on a few things to try and clear out my inventory.. </div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm5pCSK7nziyZW28I6DH4wSqqiIFF3LaiZwEzW-NuJWyDgJU8UkAmA9rzt05NgsYZ4jep2NKNvDxetWrQYrbRPOKhHKPbDnrB3NL5fZS8_xyr-6Dv-_07k3sfSiS82OXw3GhkIJmC4DDA/s640/blogger-image-1251447612.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm5pCSK7nziyZW28I6DH4wSqqiIFF3LaiZwEzW-NuJWyDgJU8UkAmA9rzt05NgsYZ4jep2NKNvDxetWrQYrbRPOKhHKPbDnrB3NL5fZS8_xyr-6Dv-_07k3sfSiS82OXw3GhkIJmC4DDA/s640/blogger-image-1251447612.jpg"></a></div><br></div><div class="separator" style="clear: both;">And hopefully before Christmas I can get the Christmas stuff listed. I did make some Christmas tree shelves using different trims:) but still need to add a star to the top... They look much better in person- I've been slowly dragging out the Christmas stuff to try and take some great pictures, just keep getting sidetracked... </div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6-wMu49Y7kGTACAhZ8f8t_K1E66GjDDsgQBvG75heWsZeqTSEBPoPfKjTXMzCW-ab_oVuG9vuoWYxJl1nxyIvplLpM2_qMi8e-zDuKerOfbS8mxvXL1zw6sUx-HLue4b2b5p2FBEHq7k/s640/blogger-image--1248347784.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6-wMu49Y7kGTACAhZ8f8t_K1E66GjDDsgQBvG75heWsZeqTSEBPoPfKjTXMzCW-ab_oVuG9vuoWYxJl1nxyIvplLpM2_qMi8e-zDuKerOfbS8mxvXL1zw6sUx-HLue4b2b5p2FBEHq7k/s640/blogger-image--1248347784.jpg"></a></div><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"> I am moving at a snails pace over here, I do apologize.. You know how life can be sometimes. I still can't find my muse... Makes it really hard to be creative.. I just miss having full use of my hand and need to suck it up... You can see how much of the tip I lost- and oneday I will get it fixed! It still hurts- and is making me sad. I just want my old life back... </div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgidhqFO3BncEta_kDwFfclr-l_IDYbo9ZAKp48-8g6LMaXunf0SrNc_kXcKm62qB-AlHGb-VTFdYaS229boIkDlV_80zJubRFhq3d5ovRt35mNEsiT3OzEICwUPkuzdYgaM8Z7uEFpWo/s640/blogger-image-655255567.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgidhqFO3BncEta_kDwFfclr-l_IDYbo9ZAKp48-8g6LMaXunf0SrNc_kXcKm62qB-AlHGb-VTFdYaS229boIkDlV_80zJubRFhq3d5ovRt35mNEsiT3OzEICwUPkuzdYgaM8Z7uEFpWo/s640/blogger-image-655255567.jpg"></a></div>... Until Next Time...</div>Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com0tag:blogger.com,1999:blog-482024596741212323.post-26473549928564665092013-06-29T00:53:00.001-04:002013-06-29T01:12:01.639-04:00Alright, Let's Talk about this finger..I know it's been a long time.. And as my Famous last words go, I will be back later to catch you up on all the other stuff. But I've been promising my readers from Katie's Clay Corner that I would talk about my hand here. And just to bring you up to speed and to I guess finally come out of the closet a little.. I shall start at the beginning. At the end of February, I got my hand slammed in the front door and broke my ring finger and my middle finger.... On my Right hand! They also had to sew my middle finger back on at the top knuckle. The doctors still call it a crushing injury. I shattered the bones at the end of my fingertip, and over the past few months those bones have bonded together to form a piece that is now suspended in scar tissue. This X-ray was taking a week ago... Four months after the injury. <br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5Eq-77VnmfH6fauS_Ir76_nlYo6HduLNBNTdLYz7DEnrK3HkNYuymbKpD2ujnPBwsEWheyuS_lJQZE2_EcKbQbCxw9y0rlEk_aC-apZ9plQ6wkYmCoNoW5S3KXT_ruSKKKlB4UG8z4jU/s640/blogger-image-2042313998.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5Eq-77VnmfH6fauS_Ir76_nlYo6HduLNBNTdLYz7DEnrK3HkNYuymbKpD2ujnPBwsEWheyuS_lJQZE2_EcKbQbCxw9y0rlEk_aC-apZ9plQ6wkYmCoNoW5S3KXT_ruSKKKlB4UG8z4jU/s640/blogger-image-2042313998.jpg"></a></div><div class="separator" style="clear: both;">That's my fingertip to the left of the other bone. For the past four months I've been going through physical Thearpy to learn how to use my fingers again. Then last week, the surgeon put me back in physical Thearpy to start working on loosening up the scar, cause there's a good chance they are going to have to go back in and remove those bones.. And then we get to start this process all over again!! </div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQrJeZV4WI-NhGm9YU3MVGTk25129n4Dy7Md3MgMZdnNP1hOpg-XWGd4hp40X984lZqMi4vHj51Tv0GJkwg63Nyb7C0nrljhJVHC_QnKdYbaBuwbmGDvmlCFo90y2s8MUKNJmib0WHAp0/s640/blogger-image--462986582.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQrJeZV4WI-NhGm9YU3MVGTk25129n4Dy7Md3MgMZdnNP1hOpg-XWGd4hp40X984lZqMi4vHj51Tv0GJkwg63Nyb7C0nrljhJVHC_QnKdYbaBuwbmGDvmlCFo90y2s8MUKNJmib0WHAp0/s640/blogger-image--462986582.jpg"></a></div><div class="separator" style="clear: both;">This is what it looks like today.. It is still swollen. I have to massage it daily... And do other amusing things like play with beans and rice and rub my finger over carpet to desensitize it. You know, cause I have nothing better to do with my time. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Sigh... I dunno. Add it to the list. Seriously? What's a lemon without a screwed up hand right, It only makes sense, lol. At this point in my life, I have to laugh... You know how sometimes in life you ask your self what else could possibly go wrong, and then the sky falls out, yea.. So you stop asking, and learn to look at the bright side. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I can still create!</div>Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com0tag:blogger.com,1999:blog-482024596741212323.post-28069843486010612872012-05-10T21:20:00.000-04:002012-05-10T21:20:37.324-04:00Well.... Hello There. Seems Its been forever since I've been in here and I'm not even sure when the last time I posted was. But I thought it was time to get in here and update my life. <br />
<br />
...ok.... I peeked. LMAO- It's almost been a year since I've updated this blog... That's terrible, huh!<br />
....But thinking back now. I needed a break. It just got to be too much. Doctor appt after doctor appt.... I just had to take a few months and hide from the doctors. Can't hide from my body, but I can hide from them wanting to learn more about me....understand?<br />
<br />
However... It's back to the real world again, and I am finding myself overwhelmed again. But I'm headed in the right direction so I feel good about that.<br />
<br />
Breaking it down... Or else I'll get lost, lol...<br />
<br />
We will start with the cysts on my only ovary. They're still here and causing problems. I have however Finally found an OBGYN that I like, and that I think I can get on the same page with. I met with her recently.... and she agreed to do the surgery, but... it's just not that easy. I have had a lot of female surgeries, so there's going to be a lot of scar tissue and adhesion's involved. And some of my other doctors and I believe that my bowels may be involved so she wants to have a gastronoligst with her. But then there's my heart and it's electrical issues.... If I lose my ovary I will have to be put on hormones, and my cardio and me just don't think my body is going to do too well with that. So I'M LOST. She wants me to start the hormones- birth control now, but I'm scared to death to. My heart has been causing a lot of issues lately and that scares that crap out of me. I feel like I'm on high speed all day. My heart meds aren't really making a difference.... and I don't know if it's my heart or anxiety or both. I did make an appt to see the nurse at my heart docs office because he is out of town until the end of the month, but then missed the appt because I overslept. I can't sleep...and the night before I didn't fall asleep until 6am... and totally screwed up everyone's morning. It really sucks cause I just want to slow down.....<br />
<br />
A while back I started seeing a neurologist for neuropathy....who also knows about dysautonomia. He ran his tests... and it was agreed by both of us to try a treatment of Topamax to see 'if we could get the nerve fibers in my legs to try and regrow" ....but OMG...did it make me stupid. Really stupid. I also lost all the weight I had worked so hard to gain back. I'm around 130 now...think I was 178 at my highest... and I'm at my lowest now. I'm almost off the meds now, the doctor wanted me to come off of them so I could get my mind back... and then when I was there he could feel a mass in my stomach(the cyst on my ovary) and it had my bowels shut down. I almost... I'm taking I was at the surgeons office begging... had to have a hemorrhoid the size of a lima bean removed, but THANK GOD they make wonderful meds that shunk it. Not to mention I spend a few nights sleeping in the tub. But I do that often to stay warn, so its no big deal. Yes, now that I'm thin again I can not hold my body temp worth a shit. Anyways.... the newer test results show that the meds might not have any impact on my legs, but they did seems to change my numbers for the better in other areas- For example... I don't sweat like I used to. So.... He wants to try the meds again one day, But there is No way my family will let me/us go through that again. <br />
<br />
And then here recently I started seeing another specialist that is new to the area who specializes in Dysautonomia. His office is in the same building where I had all my heart surgeries...and I must admit...riding the elevator up to my first appt made me cry. It just wasn't a place I thought I'd have to come back too. But... I lke this new doctor. I'm not sure if he's too sure about me yet, but we will see. Tuesday I spent the morning at the hospital doing bloodwork. As the nurse put it... I brought her a book, lol. She cracked me up all morning. And I felt so bad for her. Some of the bloodwork that was ordered will be going to the Mayo clinic for them to test... and she had no clue what it was. It wasn't her fault... she just hadn't heard of it. Something about a blah blah paranormal.... and then we were both rolling. I told her the docs have checked everything else, Now they want to make sure I wasn't ET. In my head I know he's testing autonomic stuff...but I couldn't tell you what it said. I've got too much going on to remember everything. He will probably be doing a tilt table test at some point, which I am NOT looking forward too... But hey, if it helps narrow it down for them, then whatever....I'm just along for the ride right? <br />
<br />
So...that's where I'm at....lost....confused...and still trying to live life.Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com2tag:blogger.com,1999:blog-482024596741212323.post-22990757836903238402011-05-27T09:59:00.004-04:002011-05-27T10:41:38.009-04:00One life to LiveOh my....<br />Am I way overdue on a post, huh!!<br /><br />So... the last time I was here, I had just gotten my packet from Social Security.<br /><br />However, since that time....... I decided to <em>let it go</em>. The whole thing stresses that crap out of me. I feel like half the tests I have gone through were taken just so someone else would see what I'm talking about. And the judge just didn't get it. I ran out of energy I guess. I'm tired of arguing with some old man about something he has no clue about. He is NOT a doctor.... and he is not me. How in the world could he possible understand female problems? .... I didn't go down without a fight though. I reapplied.... spent a month getting my records together, and filled out a ton of paperwork(reliving every detail from the past several years)... and then got denied again. I don't need a piece of paper to tell me I'm disabled. Anyways the whole thing was just too much. For the last 8 years.... All I've been able to focus on was how sick I was. ((It's been hitting me here lately- I was really sick there for awhile)) Now it's time to focus on moving froward! I'll have these problems for the rest of my life, and I'm tired of defending myself. Really, do you know how much easier it would be to just go to work.<br /><br />So I opened an online store to sell 'my art'. It's nice having something positive to focus on! It doesn't pay the bills, but hey- it's more than I've made in Years, so that's a good thing! And it gets me out of the house everyday to see the drama at the post office. Yes, there's drama everyday at My post office, lol. But I like having something that I can do from bed. And when I'm tired, I can go to sleep.... and when I'm 'sick'- I can deal with that. If I'm having a bad day, I don't have to call in sick. I can just roll back over and sleep some more. If one of the kids needs me, I can drop what I'm doing (although they'd tell you I get pretty lost in my minis, lol) ,and take care of one of them. For example- Tuesday evening my oldest fell off his bike, and I had to take him to the ER to get his arm checked out. It was nice to be able to just go.... And when I got home, I went right back to crafting cause I was wide awake then. I take it as it comes, you know. One day at a time!<br /><br />So while I'm here, Here's my recent complaint list, lol:<br /><br />Abdominal pain- BM hurt like hell- I can feel them moving through my stomach and it feels like someone is dragging glass. Could be that cyst... could be scar tissue. Either way.... I'm living with it, till someone tells me I can't. They told me another surgery would be really rough, and well I'm just not ready for that... I'm still up and moving, so I'm good, right?! I do generally feel better....could be the meds, could be the stress?! My weight is back to where it is suppose to be- and now none of my clothes fit again. lol. I still get monthly migraines... I still wake up in the middle of the night vomiting? But I would have to say the hardest part is still my heart. I get dizzy standing up, I can't stand in one place for any amount of time with out my legs going numb... And I still get runs of SVT- really fast heart rate. I sweat so bad.... Had forgotten how bad until I tried to do some yard work the other day- I was drenched in 5 minutes! Oh, and my eyes don't want to dilate. It's horrible.... They start to burn, and water, and then water somemore. I've always been sensitive to the sunlight, but not like this.<br /><br />But I'm living with it. I have managed to stay away from most of my doctors here lately, and that's a good thing:) I get tired of going! And I'm starting to realize that there might not be a 'fix-it' solution. Either I go in and get numerous tests done, so the doctor can understand it.... or I deal with it. One of the last doctors I saw has a plan for me to try this med, and max out on the dose, then if that doesn't work, he wants me to try this med at maxium dose...and so on. I also asked him before I left "What would happen if".... and when he answered with 'There's only one way to find out'.... I realized he didn't know anymore than I did, but was willing to try me out on this med, or that so he could understand it.... It hit me, I don't wanta play theirs games anymore. I'm tired. I spent the last 10 years trying to figure it all out, and I want to spend the next ten years focused on something else. I hope I'm making sense here.... I know I'm rambling. But it is where I am with it......<br /><br />So with that being said, I will be back..... oneday. I have a life to live:)Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com0tag:blogger.com,1999:blog-482024596741212323.post-71092337157790182522010-10-29T09:15:00.002-04:002010-10-29T09:24:38.288-04:00Is that a little light I see?I think there may be a little light at the end of this tunnel............... Finally!<br /><br />My teeth have been bothering me A Lot the past few days, so my sleep schedule is all out of whack. So, yesterday afternoon, I took a nap.......... And when I woke up, I saw that there was a big envelope on the table with my name on it... And as soon as I saw the return address, I knew it was from Social Security. Do you remember months ago when I was trying to get a copy of my court records, so I could get my final appeal ready for court. Well, I had faxed the office requesting a copy of my court records, so I could find a lawyer. I also requested I get a 60 day extension from the receipt of those records, to file a new appeal. Well..... My request was granted, and I finally got my records:) So...... Now I have to get them to the lawyer I talked to months ago that offered to take a look at my case for me. And yet all I really want to do is go back to bed.........<br /><br />I'll be back soon with all the other stuff, just wanted to document that I got my records:)Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com1tag:blogger.com,1999:blog-482024596741212323.post-88900686440462521922010-10-07T08:41:00.004-04:002010-10-07T09:16:47.729-04:00Come on tomorrow!Ready to hear me whine some more?? Don't worry, Tomorrow I get to start taking my meds again, and hopefully then I'll be on our way to getting balanced back out....<br /><br />SO.<br />Tuesday was another day I can classify as Awful! I was nauseous ALL day, didn't want to eat...and had a headache. For Lunch, I went with something simple, and ate a bowl of plain rice, and this seemed to settle my stomach. So for dinner I got brave and ate some left over pasta, and it seemed to settle ok. Although I was still nauseous, it wasn't really bad. About 5 hours later, It all decided to give me a run for my money. ((I'm thinking at this point my stomach really should of dissolved some of that rice and pasta, ya know??)) I normally don't get sick (vomit) unless I'm coming out of surgery, or have taken any kind of pain killers... or I've got a migraine....my point is that I normally do good in that department, Shees! Everyone in the house can have the flu, and it will skip right over me every time. But no....not Tuesday night. I spent A Lot of time with my head in the toilet.... not enjoying my pasta or rice the second time around. OMG It sucked the life right out of me. I can't remember the last time I got sick that many times. My poor body starting to go through the chills so I decided that crawling into a nice warm bath would be a good idea, and It was. We'll other than the fact that I can't get my right leg wet....the bath was really relaxing. I managed to get a 2 hour nap, 2 hours was all I could take of hanging my leg out of the tub/or bracing it on the wall. ((Tomorrow, I get my 2 little stitches out.... so hopefully here in the next week or so I can get in a normal bath. Normal meaning at least getting my whole body under water for a few hours:D)) After my cat nap................Oh, yeah! It was more like a kitty party. I think my cats know when I'm not doing good, cause they'll congregate around me as if I they're worried or something. The kitten thought at one point that I needed his head in the toilet with me, lol.... At least I wasn't lonely, huh! So after my interesting bath, I tried to sleep, and it just wasn't going to happen. So I watched a little TV and a few hours later I finally dozed off. Got up at 7 to feed the cats, and went straight back to bed. I was way to wobbly and dizzy for anything else. I got up around noon, and spent the day trying to reliquidfy myself. Water, chicken noodle soup.... and a little Gatorade. (Gatorade has been making my stomach icky the past few days, so I've been trying to not to drink it.) Over all, yesterday was better than the rest of the week. Then again, I sat/laid my ass on the couch all day and didn't do a thing..... Today, I'm still feeling like shit, lol.... but it's a normal shit so I can handle it. I think. We shall see.... I'm off in a little while to pick up my bestiest buddy, so he can help me do my grocery shopping......<br /><br />~Wondering if I have have the flu? Or is it the weather changing that has gotten me, or is it me being of my meds, or a combination of things?? Either way.... it sucks. I will say that the kid, and the bf have a cold.... so it could just be a bad week. I just know I'm ready for it to end!<br /><br /> .....oh yeah......... I clocked my heart at 174 bpm last night.....Nice, huh! Hopefully they'll catch that at tomorrow's tests.<br /><br />Alright I guess if I'm every gonna get motivated I better get off of here. I gotta go layer up, it's cold for me here......and get my butt in gear. Oh look at me go........ LMOAKatiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com0tag:blogger.com,1999:blog-482024596741212323.post-28410754359850823592010-10-05T07:18:00.004-04:002010-10-05T08:01:00.583-04:00Stop whinning and just do it already!I feel like Shit!<br />YUP!<br />Pure shit!!<br /><br />So....Here we are on day 4 with no meds, and I'm not having fun anymore...Well, I was never really having fun to begin with, but you get the picture. Let's see.... Day 1 I was pretty shaky.... but over all it went OK, although I did get a long nap in the afternoon. Day 2 was miserable. My IBS kicked in in the afternoon~ and it was miserable! let me see if I can explain this...... My stomach cramps up, and they're more like labor pains than anything else.... They come for a minute, then go for a minute, and then come for a minute, and so on...... And it the mean time, my heart starts to act up. I swear it feels like I'm having a heart attack. Someone one day is going to find me dead on the toilet over this, I just know it....So here I am, sitting on the toilet, feeling like my stomach is going to explode, my heart is pounding so hard, I'm just waiting for it to run away.... Then I feel like I'm gonna puke~ So at this point I'm still on the toilet, with my head in the tub, my heart pounding......and then like I need any more symptoms, I GET HOT! Really really hot~ So I turn the water on so I can let my hand run through it...and dump some cold water on my head. Yes, it's awful! And of course my body doesn't know 'how to cool down', so I go from sweating to the teeth chatters in about a second.... All while still sitting on the toilet. LOL~ Fun huh?? Well, that took everything out of me, so I went and curled up in the bed to get warm, and feel asleep....... And that was Sunday. Oh wait..... Sunday night I picked up Drew from his Grandmother's and some time between that and getting home, I had his 'cold'~ Now damn it, I haven't been sick in a while~ Not a cold sick anyways. Then again the weather changed this weekend....so it could be my allergies.<br /><br />Monday.... I sat my ass on the couch allllll day! (Still feeling the effects of Drew's cold) My heart was going a million miles a minutes, and every time I got up, I felt drunk. It's starting to get colder here...so out came the thermals~ But overall is was an OK day..... except for laying down around 5 to take a nap, and then not waking up till 6 this morning.... Haven't had the night sweats in a few days, so it was nice to wake up dry. Being wet and cold is never a good thing!<br /><br />And here I am on Tuesday.... Sick as a dog. And grumpy. Sometime last night, this 'cold' moved into my chest..... And I feel miserable. I so want to go back to bed....but I can't. I have therapy this morning...I really really need to go grocery shopping, the cats are out of food.....And I need to find the electric bill! I put all this off yesterday.....but since I have to go out anyways today... I'm just gonna have to do it. Yup! That's my motto for the day....Just Do It!<br /><br /><span style="font-size:78%;">we shall see how far I get later, lol</span><br /><span style="font-size:78%;"></span><br />So, Until Next Time.....Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com2tag:blogger.com,1999:blog-482024596741212323.post-84644022355765586182010-10-02T21:44:00.004-04:002010-10-02T22:29:45.797-04:00I love being a MomCause you get to wear band aids like this and get away with it! LOL!!<br />Don't You just love Elmo!!<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFCWT27WmhAepk4d5fEmdAITksZ9kts1ac3KS2lJRU9EfBQjDG1hVkzGfAVsdSEfTcEk3IAz1W_URw2Ymm-k7Nfybqal9oE7J9s6OZg-eaZ3l55FtTc5oTxsZgH5MZKRQGWviy46kDKww/s1600/glasshouse2+009.jpg"><img style="WIDTH: 275px; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5523630000579998082" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFCWT27WmhAepk4d5fEmdAITksZ9kts1ac3KS2lJRU9EfBQjDG1hVkzGfAVsdSEfTcEk3IAz1W_URw2Ymm-k7Nfybqal9oE7J9s6OZg-eaZ3l55FtTc5oTxsZgH5MZKRQGWviy46kDKww/s400/glasshouse2+009.jpg" /></a><br /><br />And doesn't Cookie Monster just bring a smile to your face:)<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm41C0ONhaKJHZhRpkRCb8POMnMQvqbYeBUQhqohR3uwIz-3Pxg_JtiZkEwFb9ltF1NG7NEafDpwsJA6V0Ncnk7HYPVCi5DNdDEtx4TKKfOatlVwoboFI24uKzKhNLkTPHM1YxN1OnWEk/s1600/glasshouse2+010.jpg"><img style="WIDTH: 266px; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5523629993664353858" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm41C0ONhaKJHZhRpkRCb8POMnMQvqbYeBUQhqohR3uwIz-3Pxg_JtiZkEwFb9ltF1NG7NEafDpwsJA6V0Ncnk7HYPVCi5DNdDEtx4TKKfOatlVwoboFI24uKzKhNLkTPHM1YxN1OnWEk/s400/glasshouse2+010.jpg" /></a><br /><br />So, Ya wanna see my boo-boos?? These 2 tiny little holes were from the biopsy they did on Friday. They're testing the nerves in my legs.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG-NGlxloXMEDH3VPorLsf07sPwS9kRrzgolS1tLySMpqGLBUhr7uHA-_06htB-oYK5f3xQrDgasbjnijAQESw_f3c7uNev-S7TWoQ8emYu84hdOAJBrHZnyGwTs6jMbHiadMG8cLTblI/s1600/glasshouse2+008.jpg"><img style="WIDTH: 400px; HEIGHT: 353px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5523629989334738018" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhG-NGlxloXMEDH3VPorLsf07sPwS9kRrzgolS1tLySMpqGLBUhr7uHA-_06htB-oYK5f3xQrDgasbjnijAQESw_f3c7uNev-S7TWoQ8emYu84hdOAJBrHZnyGwTs6jMbHiadMG8cLTblI/s400/glasshouse2+008.jpg" /></a><br /><br />One of the reasons I'm showing these is because these are my first outside stitches, Ever! I've had a LOT of surgeries, but they've all been with either the dissolvable stitches or using the derma-bond (super-glue)... So it's kinda neat to me, lol. However.... The doc that did them said he wasn't going to tie them too tight because when they're tight they tend to swell and then they're hard to get out...But looking at it, I wonder what the point was of doing it to begin with. Doesn't really look closed to me, does it now??<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI0Ur4yuhi8i4wXPyu8uyB-jV-saedNT4RGm1uV1mR6DrMPfzpHnHcgJFeSLewmiQrFK0PAqC5sX5SFnkmrKj-1kC_mLarZl_UoS64EjgmGWT18fqn5jlgULk_UG3GmUNh5lwG3uAKX98/s1600/glasshouse2+011.jpg"><img style="WIDTH: 400px; HEIGHT: 298px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5523629986013760018" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgI0Ur4yuhi8i4wXPyu8uyB-jV-saedNT4RGm1uV1mR6DrMPfzpHnHcgJFeSLewmiQrFK0PAqC5sX5SFnkmrKj-1kC_mLarZl_UoS64EjgmGWT18fqn5jlgULk_UG3GmUNh5lwG3uAKX98/s400/glasshouse2+011.jpg" /></a><br /></div><div>Huh?<br /><br />So..... Lets get back to the doctor visit. Just in case you want to know, and because I'm trying to keep track of it myself.... I'm now seeing a specialist in the Neuroendocrine Unit at the Strelitz Diabetes Institute. No, I do not have diabetes.... I have (what my cardiologist thinks) is some form of dysautonomia.... Which means he thinks I have a dysfunctional autonomic system. Long story.... so I'll skip to the current visit. This new doc is running a bunch of tests, and one of them was the skin biopsy. They also ran A LOT of blood tests.... 9 vials worth! Looking them up today, I see he's checking my hormones levels, thyroid and adrenal glands...he also running other blood tests too, that I will worry about if the time comes. Next was a breathing test. This was pretty simple, well as simple as it could be anyways. It records you breathing normal for 5 minutes, then records you deep breathing for 2 minutes, then normal breathing for 2 minutes....Then they have you stand up, and stand still ~for 5 minute~ so it can record you breathing normally while you're standing. At the end of that test... I did feel what feels like my heart kick starting, twice in a row. I felt it in my chest and it sent this weird sensation through my body. When the test was over, I looked over at the machine and had to giggle.... I could see the top red line, near the end had skipped twice~ And when I asked the tech if that was the heart beat, she said yes. Sometimes, it's just nice to see things on a monitor that you normally try and convince yourself that is not there. Hopefully I can get a copy of this for the heart doc, so I can ask him about it, too. After the breathing test came the hot/cold test... they strap this contraption around your big toe, and then ask you to push this button every time you feel it getting hot or cold..... when that was over, you then had to use your big toe to feel vibrations, and then what I will call a tickle test... 'Can you feel this now?' ~Never realized my big toe was this important?! Hahaa After that was the biopsy..... Not bad at all. They numb your leg up, take a couple of samples, 'sew it up'...... and out the door I went.<br /><br /><br />And then.... Today is day one without meds. Not great if you ask me, but I can function. It makes me shaky, and my heart is more erratic.... but so far, I'm not freaking out yet, lol.<br /><br /><br />Other things I want to remember:</div><div>*CANS is a test that is also called Non-invasive Autonomic Nervous System Monitoring~ AKA: the breathing test I was taking about earlier</div><div><br /> </div><div>Ok...my brains on overload now, so I think it's about time for bed....</div><div><br /> </div><div>See ya later:)</div>Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com1tag:blogger.com,1999:blog-482024596741212323.post-87892333706489903472010-10-01T14:37:00.001-04:002010-10-01T14:38:37.055-04:00That wasn't so bad...9 vials of blood and a few stitches later I survived the tests!! Woo Who!! LOL<br />.....I'll be back later with more info......<br /><br />See ya later Alligator!Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com1tag:blogger.com,1999:blog-482024596741212323.post-77241347878082440222010-09-24T09:37:00.003-04:002010-09-24T10:14:51.817-04:00Meet "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.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-jS_KZmV8Ru1T7d-RR5XArUuCmoOmhtttQGBpC6vB2Bqz3RXJ683IdrBR7Kbs4bRAZOtR8vrRfw-hrSQgE8eN4BcSKwSlUuzsUr02Izeg15VfWWS8lQGv7ZzVa1NNiQeFLTwrDO_dyo0/s1600/glasshouse+072.jpg"><img style="WIDTH: 400px; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5520474033695486146" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-jS_KZmV8Ru1T7d-RR5XArUuCmoOmhtttQGBpC6vB2Bqz3RXJ683IdrBR7Kbs4bRAZOtR8vrRfw-hrSQgE8eN4BcSKwSlUuzsUr02Izeg15VfWWS8lQGv7ZzVa1NNiQeFLTwrDO_dyo0/s400/glasshouse+072.jpg" /></a><br /><br />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.<br /><br />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. <span style="font-size:85%;">**I remember now... A skin biopsy! How could I forget about that?? LOL</span> 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!!<br /><br />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.......<em>'shivering from the thought of a dentist doing anything near my mouth!!' ......</em> 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!!<br /><br />But I'm still smiling so all is well for now......<br />Right??<br /><br />See ya Next Time:)Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com2tag:blogger.com,1999:blog-482024596741212323.post-4813704119337329092010-09-15T15:26:00.002-04:002010-09-15T15:38:42.555-04:00A 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. :)<br /><br />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.....<br /><br />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.<br />.....no more cookie dough for me! LMAO....I'm a sucker for cookie dough!<br /><br />So...that's about it.<br />Until Next time.....Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com1tag:blogger.com,1999:blog-482024596741212323.post-23167300970515445542010-09-02T20:43:00.002-04:002010-09-02T20:55:30.888-04:00Well.....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:)<br /><br />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!<br /><br />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........Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com1tag:blogger.com,1999:blog-482024596741212323.post-39221784475344661242010-07-29T10:32:00.003-04:002010-07-29T10:41:15.283-04:00Tha darn cyst is still there!!!Thought I'd update on a few things....<br /><br />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.<br /><br />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!!!<br /><br />** 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!!!<br /><br />Thanks for listeningKatiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com3tag:blogger.com,1999:blog-482024596741212323.post-10821834827645221532010-07-16T09:17:00.003-04:002010-07-16T09:19:35.713-04:00OK, 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.....Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com2tag:blogger.com,1999:blog-482024596741212323.post-33220851684645608742010-07-14T14:23:00.002-04:002010-07-14T14:27:33.983-04:00...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...... <em>Zombie Mode</em> is another way of explaining it......Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com0tag:blogger.com,1999:blog-482024596741212323.post-79264542839865531992010-07-13T20:32:00.002-04:002010-07-13T22:03:24.548-04:00Well....Things went well today.<br /><br />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.....<br /><br />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.<br /><br />**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: <span style="color:#000000;">Carpul Tunnel Syndrome </span><span style="color:#000000;">, </span><span style="color:#000000;"> IBS</span>, and internal cystitis may all be treated with amitriptyline.<br />and Due to amiptriptyline's ability to induce sleepiness, it is sometimes used to treat insomnia<br /><br />See ya next time:)Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com0tag:blogger.com,1999:blog-482024596741212323.post-35329258123109667322010-07-12T16:17:00.003-04:002010-07-12T16:46:12.949-04:00Rambling on again....Thought I'd update you on where I'm at this week.<br /><br />So I found a lawyer in the area that has agreed to look at my file for me. However, I also found out that it's going to take this disabilitly office at least 2 months to 'get to the request' for that file.......and considering I have about 2 weeks to get this appeal filed, I had to laugh. In more ways than one, I screwed myself.....and if there's a bit of hope out there.....I can fix this....maybe. First, I have to muster up the energy and the courage to walk my ass through those big metal doors and beg, whine and plea. I'm not good at this, I'm not good at complaining. I read on a blog the other day where someone was talkng about pain, and not realizing how much pain they were in because it was just a part of who they were. And in turn, it made me look at my life. I don't complain about things on an everyday bases because I'm just used to it. Well, I can't say I used to it, but it is a part of who I am. From the pain in my abdomen, to the irratic heat beats.....it is what it is. However, I guess I need to learn how to complain....how to really express my symptoms, and not just try and sugar coat them for other people. I mean come on....When some one asks me how I'm doing, My normal response is 'Fine'..... No one wants to hear that I woke up with a migraine around 2....couldn't go back to sleep......had to puke around 3...and then I slept in the tub till 6....... And today I'm dragging. I'm alive ain't I? Then I'm Fine, you see? Oh My....I''m talking in circles again, huh??? LOL> Welcome to my world.....around and around we go....<br /><br />So, I meet with a new OBGYN tomorrow, and I'm a little nervous. I don't know what my problem is, But I have yet to find an OB that I can get along with, and I have seen A Lot. I feel as if they never truly listen to me, and I'm not one to make shit up. I'm just so overly in tune with my body. I know this now..... It took me awhile to trust myself again, still very angry with the doctors that once made me doubt myself......But in the long run, It taught me to Trust My own Body!! And my own instincts. Hopefully this OB tomorrow can get on the same page with me....and if not, then at least I'll be able to get my follow-up ultrasound to check on that cyst. I do still plan on being stubborn about No more birth control.....and about not rushing into any kind of surgery.....If I've said it before I'll say it again......I'd like to keep this ovary as long as I can. In September, I'll meet a specialist who deals with Dysautonomia patients, and hopefully he'll be able to answer all those questions I have. I'm curious to see how the reproductive system and hormones effect dysautonomia patients......<br /><br />OK, I'm off to get my questions ready for tomorrow.....I have to write stuff down or I forget!Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com1tag:blogger.com,1999:blog-482024596741212323.post-46952497367330699942010-06-26T09:27:00.005-04:002010-06-26T10:00:26.980-04:00My mind is going to fast for me to keep up.When you wake up crying, you know it's going to be a rough day! Would you believe I laid down "for just a minute" last night around 5......and didn't wake back up until 6 this morning. Yup! I was exhausted! And I don't think I would of gotten up at 6 if it hadn't of been for Otis in my face telling me he was hungry. Also missed my meds last night, so my heart's a little icky this morning.... And then to add insult to injury....<br /><br />Let me tell you a funny story. So I got my new TENS machine in the mail this past week, and decided this morning that I would get it out, and read the book. It's not the same one I had before, this one has A Lot more buttons on it. So.....my back has been killing me (I think the cyst on my ovary is bleeding again, cause it's the exact same pain I was having last year) anyways.....where was I? Oh...The new machine, So I hooked it up, and got it going and laid down for the next hour. When it came time to turn it off.....I turned the dial the wrong way and about flew off the couch. HOLY COW! Does this little box have a lot of power! Almost reminded me of one of those ablations I had. Good God! I hope I never do that again. LOL< Yes, it's OK to laugh....I did, How dumb was that!?! So now that I'm shaking....... Lets get down to business!<br /><br />I'm still on the lawyer hunt. Found one 2 hours away that at least took the time to explain stuff to me. I've got a lot to do this week to try and 'get it together'.......if I can find the energy. It makes it hard when you have blood pressure issues to get up and do things all the time. And if I'm right~ that cyst on my ovary is back- but then again, it may have never gone away, and it may just be bleeding again, and if I'm right about that then I've got a migraine coming soon, too. You see......I still have one ovary. Everything else was taking out over a period of time. I ovulate, but I don't have a monthly visitor, you follow. (Sorry to get personal) So I have to guess to when my cycle is, by the symptoms I'm having. And I've tried to write it down to find a pattern, but there isn't one, So I'm left to guess. My point here, is that I hope this doesn't create a problem for me................I need all the energy I can get right now.<br /><br />Well.....I felt like writing, but I find myself censoring way too much, so I guess that may be it for now......But then again.......<br /><br />OK...Here's an after thought.........Looking at my last post I see that it has been about a month since my last migraine...... So maybe there is a pattern......Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com2tag:blogger.com,1999:blog-482024596741212323.post-38264285336096974262010-05-30T15:10:00.003-04:002010-05-30T15:26:35.405-04:00denied.......again!I can't believe I haven't posted on here since the end of January....What can I say, this is how it is. I've been taking it easy.......and finally got back into head therapy. If you remember my old head doc retired last year, and it was really hard for me to start over. Can't say I've accomplished anything in therapy yet, cause we're still getting to know one another.But at least I'm there. I have been feeling better lately.....but hold on, don't get too excited, this is how it is. And I'm not saying I've been out running marathons or anything, but my spirits have been up. Then again it might just be that time of year. I always get that 'spunk' of energy when it starts to warms up.<br /><br />Last week was a little rough....Stress has been a factor though so I understand. A week of migraines and lots of bathroom visits! Yuck! I got my last denial letter from Social Security this past week, and have been busily trying to find a 'disability lawyer that works at the federal level'. I really don't have the energy for this, but I also don't feel like there was anyway I could of held a job down and go through what I want through. No, I still haven't returned to work yet....still having problems with my blood pressure fluctuating....among other things. But I am trying to get there. I finally found a doctor in my area that 'treats' Dysautonomia!!! But couldn't get an appointment until September. However, my appointment is for 2 hours, so we'll be able to cover A Lot!!<br /><br />So that's about it...Not to exciting huh, lol...............<br /><br />See ya next time......Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com2tag:blogger.com,1999:blog-482024596741212323.post-22532702193902299092010-01-30T20:22:00.004-05:002010-01-30T21:05:54.926-05:00Thyroid update.Thought while I was on here...I should post an update, huh.<br /><br />So, let's see. My blood work on my thyroid came back normal. But my ultrasound did not. Seems I have an enlarged thyroid (Thyromegaly, as it reads on the report)....and I have a 1.9 cm solid nodule on my left lobe. Fun, huh! I have had A Lot of crazy thoughts go through my head since I got the news, but for the most part , I think I have settled my nerves down. I don't get to see a specialist until April, which annoys me because I'm ready for answers NOW! I Hate waiting. But on the bright side of things, my PCP doesn't think it's cancerous, so that's good. Just another bump in my road, I guess. But I tell you this, I am really Tired of learning about new body parts. If I had wanted to know all this I would been a doctor or something. But it does make me think that with this knowledge, one day.....it may come in handy. Just wish I could remember everything I read. Half of it is lost as soon as I read it, not to mention that the other half is not even understandable. Don't they have a Dummy's guide to the human body...something with words that I could understand? I don't get half of it. I do try and write down my questions though...and I try to copy the important stuff into my notes. That way, when I'm at the doctors, I at least have a general idea of what he'll be talking about, and if I have any questions, I can ask them, them.<br /><br />So....in other words, I still really have no clue as to what is going on. I ask myself how much of my 'heart symptoms' are actually thyroid issues, and if they can be fixed with meds. Wouldn't that be awesome! If I eventually became symptom free.....I wouldn't even know what to do with myself, lol.<br /><br />Still haven't made an appoint with my OBGYN........I'm still wore out from all the crap I've dealt with so far, I'm just running low on umph! I look at it like this. I don't want to go on meds, and I don't want to lose my last ovary either. So, I wait it out, and see what happens. I can live with pain......gives me an excuse to take long hot baths. Mind of matter right. Or maybe I'm just being stubborn.<br /><br />I dunno.....<br />I know this much<br />I'm open to any advice or info any one has on thyroid issues. Any good website recommendations? Any thing I should know about as far as meds go? Anything I should know period? Any tips, books.....Anything? I'd really appreciate any advice anyone has to offer! Thanks!<br /><br />Until Next Time......Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com1tag:blogger.com,1999:blog-482024596741212323.post-72654374489672759342010-01-13T08:54:00.003-05:002010-01-13T09:39:04.626-05:00I'm still here......Yes! I know, I am long overdue on a post......But don't worry, you haven't missed much! I took the month of December off! I decided that I needed a month of no doctors! No stress! No BS! I'm 'sick' and there's nothing that can be done about that....and all the other little things are just bumps in the road, But Dang it! I need a break sometimes! And if that means staying away from the stress of the doctors, then so be it. I honestly could use another month or 2 to hide, but I'm afraid that if I put things off any longer, I may cause more damage. So....with that said:<br /><br />I saw my PCP yesterday to catch up and try and get a handle on somethings. When I had my annual exam with my regular OBGYN, she told me that my Thyroid was 'prominent" and that I needed to get it checked out. Well......My step-sister has had hers removed, then My Mom had hers removed this past year....and well, it's just something I didn't want to deal with over the holidays! I can't tell you how many times I have spent the holidays sitting at the hospital waiting on a CT, or blood work, or preparing for surgery.....and well, this year, I didn't want to do that! However, my life isn't really about me, it's about all those people that surround me, and well, I can't let them down. So, yesterday, I got my blood work done, and the doc has ordered an ultrasound to check it out further. Funny thing is I now know where my Thyroid is.....From what I read yesterday, your not suppose to be able to feel it at all......Unless it's acting up~ so maybe now that I've said something aloud about it, it will go away! Honestly, I've felt it acting up for months now, but I honestly made myself believe that I was just having sympathy 'aches' for my Mother.....Or I blamed it on my sinus draining.....Yes, I have been trying to think of everything else, but the worse case scenario....I'm just tired of being cut open.....Really! I'm over it!<br /><br />And then to top it all off, I can't stop thinking about going back to school. About where my life isn't going. I had so many dreams of what my life was going to be like...and they're all coming back to me. I just don't know how to balance doing something with myself and taking care of myself. It's depressing! I keep telling myself that there's a bigger plan, and that this is how I'm suppose to prepare for it......but it makes my head hurt thinking about what it is that I'm preparing for, ya know! Life!<br /><br />......and we can't forget about my ovary! Next month I gotta get an ultrasound to see if that cyst has shrunk any....and yet, I don't have a doctor I trust to talk to about it. I like my primary OBGYN~ But she sent me up stream along time ago, because my case was too complex....and I don't blame her! Actually I respected her for being honest with me about it. Yesterday, my PCP told me to go back to her, and see if I can't find a new starting point. I really don't wanna, and still haven't called. I just feel like I'm running in circles....well, maybe crawling in circles would be more like it, lol. Point is, I'm going nowhere fast, and <em>IT'S DRIVING ME NUTS</em>!!!<br /><br />So, as I sit here and prepare for my next ride, I think. and Think.....and think........<br />Will I ever be able to get past this????? <br /><br />Until next time.....Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com1tag:blogger.com,1999:blog-482024596741212323.post-34708865384800451252009-11-16T08:03:00.004-05:002009-11-16T08:48:23.452-05:00I know...it's been awhile!Well.....If you've read my other blog.....You know that my computer was acting up....and I simply unplugged it. Electronics really stress me out...Other than knowing how to turn one on......I just don't get it. And then I also just didn't feel like talking.<br /><br />My Grandmother passed away on Oct 22....and then began some family drama, that I really wanted to avoid. I just don't think some things need to be aired all over the web...Yes, I know I've shown pictures of my body that know one else would show...but when it comes to talking trash about a certain family member....I'm just not going to do it! I will say this.....My 'family' is very important to me....And there's some people that I really don't consider Family....and I just think they need to mind their own business! So with that said....I'm moving on.<br /><br />Grandma was cremated.....And is now back at home with Grandpa. And Grandpa is talking about taking her on a cross country train ride, because it's something that he's always wanted to do! I just think it's so sweet that he wants to do this!!! My Grandparents have been together for 60 something years.....So it only seems natural that he'd take her with him.<br /><br />And as for my health....Well.....nothing has changed. I went for an ultrasound last week, and I do think they said that the cyst wasn't hemorrhaging anymore, but that it had gotten a little bigger....I just don't want to mess around with the hormone treatments~ After going through 3 heart ablations....I AM NOT trying to mess up any of that work that was done. It scares me. And surgery is just not an option right now~ I really want to keep my ovary as long as I can. So the doctor suggested a follow up ultra sound in 3 months. And let me tell you.......This waiting game SUCKS! I want it fixed now, I am tired of playing with it. I did have my blood check, and there was no anemia.....and they even checked my stool, and there's no blood there.....So that makes me feel a little better.<br /><br />The doctor and I seem to be bumping heads though about where my pain is coming from......I know that when I have a bowel movement...it hurts like hell, like the bowel movement is sliding across something that is really sensitive. And he thinks it coming from my IBS. LOL< I even took a Valium before I went and talked to him the last time, so I didn't get emotional.....but the conversation we had seemed to go nowhere, and I was crying and having an anxiety attack as I left. So now I guess I'll get a third opinion. But I'm running out of options here. I think I've seen 2/3 of the GYNs in this area in my life, and I've bumped heads with ALL of them. Makes me feel like I'm the one who has the problem, but honestly....no one ever really wants to listen to me. I've been playing this game for years, and have run real short on the energy I have left. I really need to get back on track.....Looks like I have a lot to do, and yet.....I think I need a break. ( LMAO!!~ You know what the shitty part of being 'sick' is.....You never really get a break! You can't run or hide from it......I know, I have Tried...It just followed along behind me! But I can take a break from the doctors, right. So Now I'm waiting.....waiting for the next hiccup, waiting for this cyst to go away.....and waiting for my Umph to come back........<br /><br />That's about it I guess......With me anyways.....<br /><br />But before I go.....I want to tell you about my neighbor and her son, Lane. The weekend we took the kids to camp, her son fell and hurt his leg, And when his parents took him to the ER, they found out he has cancer in his leg. Luckily we are right next to one of the Best Children's hospitals...where he has been receiving his chemo, but here on the 20th he goes to Duke for surgery. This Kid is Amazing! Lane always makes me laugh! His parents have a website for him, and when you get a chance......you should go check it out, too!! His link is over on the right hand side of my page...and while you're there~ Look at his pictures(second page of pics I think)!! He was a tank this year for Halloween, and honestly, it's the coolest costume I've ever seen!! Also....please leave him a comment....it's Ok that you don't know him, He just likes reading them! I'll be keeping my fingers crossed for the family this week, they have a long road ahead of them!! My prayers and thought will be with them!!Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com1tag:blogger.com,1999:blog-482024596741212323.post-966404903337043642009-10-17T13:19:00.007-04:002009-10-22T08:48:46.107-04:00My GrandmotherMy Mother called earlier today to tell me that my grandmother is not doing really well, and they have asked for the family to come. She had surgery on her bowels about a month ago, and never really fully recovered from the surgery. She's had colon cancer twice, and lived through that! But now that she's older, her body isn't holding up as well as we would like it to. My Mom has told me she will fly me out to California when I'm ready....but I told her, I should probably wait until Monday, and get a doctors clearance before I fly. I get really sick when flying, and I want to make sure I can handle that. Among everything else.<br /><br />Grandma is 86, I think, and has been married to Grandpa for over sixty something years. And I don't think Grandpa knows how to deal with this.....he's always had her with him! It's so sad when you see older couples that have been together forever, lose one another. She's my Last living Grandmother.<br /><br />....And I can't be there.....yet! Hopefully by the grace of God, this is just a hiccup in the road, and Grandma will be back to normal in no time, but I fear the worst. Time will tell........and until then, all I can do is wait.<br /><br /><br />**Update**<br />So time is starting to run together and I'm not sure where I last left off. But this is where we are at today. Mom called last night to tell me the doctor had been by and that Grandma was now in a coma. He told the family that she would probably pass on during the night...if not the next day. It is now Thursday the 22nd of Oct.....and because of the stupid time difference, I have to sit and wait another 3 hours before I can call my Mom. Not to mention the fact that I'm still waiting on the doctor to call. THAT has been one big mess!!<br /><br />So, I was trying to get in and see the 2nd OBGYN, to get her opinion about the cyst....And then her Secretary called me Early Monday morning to tell me that she (The doctor) had the flu and would not be in the office that day. So then I called my PCP and made an appointment.......and while I was at that appt, I got him to run a few basic tests. They're checking my blood to make sure I'm not anemic....and they now have a stool sample to check for blood. However that was Tuesday...and the doctor told me he was going to call the 1st OBGYN to see what we could do to get my appointment moved up. And he said he'd either call me that afternoon or the next morning to let me know. And well....I'm still waiting. I'm guessing the blood work hasn't hit his desk yet, and considering that this is the beginning of flu season, they've been really busy.<br /><br />Like I said..... I'm waiting........waiting for the doctor to call and tell me I'll be fine, so I can get on a plane and go be with my Mom before she breaks down. I know I've missed the opportunity to talk to Grandma, but I also know My Mom needs me there right now, even if she says she don't. I'm her only child......and she's my world!<br /><br />Needless to say.....I am REALLY frustrated with things right now...and I just don't know what to do. Really, I am not trying to whine here about something that might seem so simple to someone else...I'm just not trying to cause anymore drama for the family.Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com0tag:blogger.com,1999:blog-482024596741212323.post-26455169962188568822009-10-15T06:55:00.004-04:002009-10-15T07:15:48.481-04:00Is it just me??Or do you get really annoyed when you show up at the doctors 30 minutes early to fill out paperwork, for someone to then come out and tell you 30 minutes after your appointment that the doctor is running an hour late????? Ya know, I am really getting tired of this whole game you play with being 'sick'. I understand that there is thing called emergencies, but darn it, when you piggy back patients every 15 minutes, that doesn't give you anytime for emergencies....and some of your other patients, who might not be in a dire emergency, but really need to talk to someone, are left to sit and wait. When the receptionist came out yesterday and told me the doctor was behind, I asked her if I could come back or could we reschedule....and she said she had to ask the nurse. And the nurse said something like if I wasn't back when she called me then I wouldn't get seen. NOW......would it really be that hard for the nurse to WORK WITH ME??? Seriously, I can barely sit for an hour without my legs going numb.....not to mention the pressure that I get in my abdomen from sitting...so no I'm not going to sit in the waiting room forever waiting.....I'll come back! So we rescheduled for Monday. Hopefully it goes a lot smoother then! BUT DAMN Am I ANNOYED! Really, I'm tired of this shit! I'm tired of waiting.....I'm tired of thinking. I'm tired of taking a Valium just so I can get through shit without going postal! If I could get my head to spin around, I would...and then I'd ask them...CAN YOU HEAR ME NOW???<br /><br />I did manage to ask if they had gotten my other records, and they have.....so I guess i can forgive them for the whole time management thing........So, keep your fingers crossed that I can get a little further ahead on Monday!!<br /><br />Oh....and while I'm thinking of it......I really need to find another head doc. I thought I could do this on my own.....but I'm just not that sure anymore!!!! I really, really miss Linda!!! Damn you for retiring, LOL!!!!!Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com0tag:blogger.com,1999:blog-482024596741212323.post-6356290897182240312009-10-13T18:47:00.004-04:002009-10-13T20:00:10.880-04:00I knew I wasn't Crazy!!So....When I had my breast surgery......I remember waking up in the post op room, and looking up at my vitals.......and I remembered seeing that my temp was 94 point something...............But when I talked to the surgeon after surgery, she said that she didn't remember anything about my temp dropping and that if it was 94 degrees, I'd be dead...........And I figured since I was just waking up from some surgery, I had probably misread something or something. But my instincts told me otherwise..........So last week I went down to the records department and requested copies............And today, they came in the mail...............And WELL.......I couldn't feel better. See, I had read it right!! And just in case you can't read the numbers......they were:<br />91.1 at 9:30<br />93.3 at 9:35<br />93.7 at 9:40<br />and<br />94.1 at 9:45<br />.....and I'm not dead!<br />So, unless there is some other explanation for this.........I might be on to something here. Don't worry....this is just another one of those things that goes along with having Dysautonomia, I think, but I'm wondering if anyone else with this has ever seen the same pattern with having surgeries? Any anesthesiologist out there seen this in another patient? Just wondering....<br /><br />But I will say this one more time before I go....<br />It's so good to know that I'm not crazy, and that I wasn't seeing stuff. And feels even better to be right, lol! Can I do my happy dance now??<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3fq7laNwZpdR29HHBoOxyZnsCC8G1xr4CMXf738_cNFNCFW-n4FIZ5cisiPyWajYqbR_nruio3A_-xGnbGLvvBffJcjH0rkVYAE7jSSnO5gRdyYTJ_2me1uFS-7sU8ibMxLcgdrocLd0/s1600-h/temprecords.jpg"><img id="BLOGGER_PHOTO_ID_5392220500382788738" style="WIDTH: 400px; CURSOR: hand; HEIGHT: 191px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3fq7laNwZpdR29HHBoOxyZnsCC8G1xr4CMXf738_cNFNCFW-n4FIZ5cisiPyWajYqbR_nruio3A_-xGnbGLvvBffJcjH0rkVYAE7jSSnO5gRdyYTJ_2me1uFS-7sU8ibMxLcgdrocLd0/s400/temprecords.jpg" border="0" /></a><br /><div><br />Oh....and while I have the report in my hand....</div><div> </div><div>My mass biopsy report reads:</div><div>"Focal biopsy site changes with stromal fibrosis and fibroadenomatoid change"</div><div>and that simply means.....Benign hormonal changes....((i think))</div><div> </div><div>OK.......that's enough excitement for one day:)</div><div>Until Next time....</div>Katiehttp://www.blogger.com/profile/00588140085362364030noreply@blogger.com0