Monday, November 28, 2011

Round 2

     Today I had an appointment with Dr. Endo (this is what I'll be calling my new Endo doctor as my old one has left.. he'll be referred to as old Dr. Endo if need be) this afternoon. The last time I went to see Dr. Endo I wasn't a happy camper. This time I went in with the knowledge that we have done everything via the Urologist that he felt we needed to do and still I was in pain without an answer. The Urologist has tried me on two different meds - which made no difference in my pain and did something that I can't think of the name of where he viewed the inside of my bladder. He felt he ruled out IC along with anything else. We talked about how much pain I'm in and she, again, told me she didn't feel right doing surgery. She felt the cons outweighed the pros. So after a crying fit I continued and told her some of the new things that have come about: I was in so much pain that I blacked out the other day. I don't know for how long but I don't think it was very long (luckily I was sitting in a chair), my pain seems to steadily be increasing, when I'm in a lot of pain sometimes I can't eat because it makes me throw up (this has been more common then before), and sometimes when my pain is really bad my stomach will (for lack of words) blow up like a balloon - it looks like I'm 7 months pregnant again, my stomach gets really tight and hurts. I haven't noticed anything that truly helps that. I just have to wait for it to deflate. She said that that is NOT Endometriosis and she believes it to be something having to do with my GI tract. She said to me, stressed to me, that was NOT normal. I've had a colonoscopy within the last few years but I couldn't remember with who. I know they were going to do an endoscopy as well but I got pregnant and they assumed pregnancy would cure all my health problems. *epic eye roll* She said she was going to refer me to another GI doctor and that they would probably do an endoscopy along with a test where I drink dye and they watch it go through my system to see if there are any problems with that. She feels that is the best route for us to go. She said that, again, it's probably going to be a trial and error with them but hopefully that will help. Somehow we started talking about the Urologist again and I said that he had done a something scan and he didn't believe that I had IC. She didn't know that. I told her I thought I might get a second opinion because of how the exam went. I explained to her that he saw something but was "pretty sure" that it wasn't anything. Well I wasn't a hundred percent with his "pretty sure" so I took a picture of what he was talking about.
I pulled it up on my phone and showed her. She said it was definitely something she just doesn't know what. That was my conclusion too. I told her I was going to get a second opinion, she nodded in agreement. Then she said that after I go through the GI people and their try this and try that's, if I'm still in this much pain and they have no idea then she'll probably do a surgery. I think this bump worried her as much as it worried me.
     After we discussed everything having to do with my pain I said to her "Okay so now I have to ask you something that has absolutely nothing to do with your specialty" I think she is starting to get used to me because she just said okay. I reminded her that I had ITP in 2009 and was hospitalized and went through a ton of stuff to get rid of it. I told her that some of the signs that happened last time were bruising, easy bleeding, and a rash on my legs. Well I have a ton of bruises all over me and since my platelet count dropped so dramatically last time they said if I had any signs to get bloodwork done right away. I called the hematologist who proceeded to tell me they have no record of me and I'd have to schedule a new patient appointment with them which they could fit me in the first week of January. They suggested I call my regular doctor, who I called and they said I had to wait until my appointment - two weeks from now. I showed her some of my bruises and she said she was concerned but she couldn't do anything if my numbers were low. I told her I didn't want her to do anything.. I just need a CBC (blood count) and if my number were low I'd sit in their office till they saw me. She said she would be responsible for me if my numbers were low but since she doesn't handle that she would have to admit me to the hospital and they'd take it from there. She decided to refer me to the Hematologist there and if they had an appointment this week she wouldn't have my blood drawn but if they didn't then she would so at least we'd know something. They didn't have an appointment until next Monday but the lab had closed so now I have to go in tomorrow morning to get my blood drawn. I'm worried but I'm praying I'm just odd and it's not my platelets. So... to sum up: Endo is most likely not the problem for the new severe pain, I have to go see a GI and let them poke and prod me, I have to get my blood drawn tomorrow and hope it's high enough I don't have to be admitted to the hospital again. !!!! I just remembered I forgot to ask for a prescription of pain pills...pray for me!


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Come on baby... and do the twist!

     Throughout the month people have been writing one thing a day that they are thankful for. I decided to save it all up until the end of the month to share my 30 things I'm thankful for. One for every day of November.

     1. I am thankful for my Mother, who I call Ma! when she's not listening and Mommy when she is, who has always been there for me. Though sometimes she didn't think I was listening (*clears throat* years 14-17), I always was. She is my best friend and I am thankful for our daily phone conversations, our laughs, our hugs, our everything.
     2. I am thankful for my Grandmother, who we can all agree is our family's rock. She is the strongest woman I know, she has been through it all and still she smiles. She has taught me so many things: If you do it right the first time you won't have to do it a second time, do all the dishes at night because it's wonderful to wake up to a clean kitchen, family is family - no matter how much they annoy you, and how to say SHIT when you are angry!
     3. I am thankful for my sister, Angela, my annoying-pain in the butt-spoiled rotten-abercrombie wearing sister.  With a 9 year difference it wasn't always easy being her biggest fan, she was a mean child who taught me all the bad words I now know. BUT I am her biggest fan. She is smarter then she thinks and more beautiful then she'll ever know. She is a great singer and an amazing photographer. She is my partner in crime and THAT I'm thankful for.
     4. I am thankful for Tyrone. His I love you's, his kisses, his laughs, his love for football, his ability to take the jokes me and Angela dish out. I am thankful that he is an amazing Dad to our little girl. I could not ask for more, he is absolutely amazing with Haleigh. I can't help but smile when I see how much he loves her and how great he is with her. I am thankful that he loves me enough to stay around... he got more then he signed up for when he started dating me. Though I have an amazing support with my disease.. Tyrone is my main support. Tyrone is the one who has to pick up my slack when I'm in pain. Tyrone is the one who has to finish the dinner/clothes/dishes I couldn't finish, clean what I couldn't clean, take care of whatever needs to be taken care of. Tyrone is the one who has to lift me up and lay me down when I can't take care of myself. He does more for me then anyone knows... I am thankful for a loving, caring, supportive boyfriend.
     5. I am thankful for Haleigh. After being told it would be difficult (maybe impossible) to have children we both feel truly blessed that we were able to have Haleigh. I don't even have words to describe how amazing she is. She always brings a smile to my face. I am thankful for her hugs and kisses, her smile that can light up anyone's day, her "shake a baby" when she's about to do something fresh, her fresh face - where she scrunches up her nose and smiles, her mommmmmaaaa when she needs something, her dada when the front door opens, her everything. I can not yell it enough for the rooftops.. Thank you, thank you, thank you God for believing in us enough to send us Haleigh!!
     6. I am thankful for Luckie, oh MAN she annoys me sometimes.. but I love her. I love her cuddles and how she loves to play. I love how smart she is and how she pretends she's not. I love that she knows when I'm in pain and she'll stick by my side until my pain decreases - this includes sleeping practically on top of me when I go to sleep in pain.
     7. I am thankful for old friends. The ones who I am no longer friends with. They shared laughs and smiles with me while we were friends and just like we all do, they helped me grow. I appreciate all they taught me while we were friends and even now today as I look back on those times.
     8. I am thankful for my friends. They laugh with me, cry with me, plot with me. Some I've been friends with for more then a decade and some for less then a year.
     9. I am thankful for my family. We are a very close family, as I've ventured out in the world I realized that not every family, matter of fact, most families are not as close as we are. There are some families who don't talk to one another often, who don't take the time to see each other as often as possible, who don't plan family gatherings.
     10. I am thankful for all of my cousins, of course, but in particular Cori and Butchie. We gew up more like siblings then like cousins. Cori and I had joint birthday parties. Butchie and I lived together at times. All three of us got in trouble together. I am thankful to have two cousins who love me as much as I love them. I am thankful we continually grow closer as the years go on.
     11. I am thankful for my church. We have found our home in New Hope church and we could not be happier. We are welcomed by name, they love us and our family, they are involved in our lives. I am especially thankful for the fact that Pastor Mike and his wife Carol are understanding of my pain issues and are on the lookout for a cure!
     12. I am thankful for UVA hospital. I know that I complain about my doctors but UVA is the best of the worst (haha). I can't fault them for there being nothing else they can do with me (I say this because my pain is only at a 3 right now) but I can thank them for figuring out at least ONE of the things that is wrong with me (Endometriosis). I also am thankful they cured my ITP.
     13. I am thankful for books. I love reading. No matter what is wrong in life, reading always makes me happy. When I'm in pain, when I'm depressed, when I'm mad - I can read a book and magically be transported into a whole nother world.
     14. I am thankful for laptops which help me connect to the world when I'm in too much pain to sit at the desktop.
     15. I am thankful for Sami who allows me to watch Cooper while she's at work which also allows me to be the SAHM I always wanted to be. I am also thankful that due to watching Cooper I do not have to stress over not being able to work due to pain.
     16. I am thankful for Cooper! We play all day, we sing songs, we dance, we play cars... life is so fun with two little ones! Thank you Coop for being my adopted son!
     17. I am thankful for music - I love you so! Some days I need to turn up my hippity hop and listen to the boom boom of the bass, sometimes I need to roll down the windows and jam to Nsync, some days are Lynryd Skynyrd days, some days are classical days, and some days are celtic days.
     18. I am thankful for the Blue Ridge Mountains. They are gorgeous all the time - they are almost always in view, and they are the perfect place for spring picnics and fall hikes.
     19. I am thankful for cameras and pictures. I love taking pictures and I love looking back on my memories. I wish as a teenager I would have taken more pictures (but sometimes I'm thankful I didn't).
     20. I am thankful for social networks which allow my family to follow Haleigh growing up, my health issues, and my day to day life. I am thankful I can stalk them too ;-)
     21. I am thankful to Murray who taught me to communicate and mediate. It is not easy to learn to say you are sorry, to admit you are wrong, and to not blame others when you are upset but Murray taught me all of these things and more. Though my family doesn't appreciate my "Murray talk" some times I know they appreciate it in the long run.
     22. I am thankful for all the women I have met through Endometriosis and Infertility boards, forums, youtube, and so on. These women are amazing, strong ladies who have struggles just like I do. These are the women I turn to when no one else understands exactly what I'm going through. Thank you ladies!
     23. I am thankful for cloth diapers. Odd yes? Nope. At first cloth diapering was just a thought, then through some of my youtube mommies I learned it was a definite possibility. Cloth diapers brought me together with so many of my new friends - Sami, Hannah, Monique, Andrea.. I could go on and on. Due to cloth diapering I have made some amazing friends and well... I got some cute fluff too!
     24. I am thankful for yarn. Without it how would I make awesome things via crocheting? Crocheting is something I can do when my mind is too fuzzy from pain/pain medicine to read a book or concentrate on a tv show. It's also just a pretty awesome thing to do.
     25. I am thankful for the internet which has been a huge part of my life since 1998. I've met so many amazing people and some of my best friends through the internet. The internet helps me see/talk to family/friends, learn new things, plan things, stalk my favorite authors, and most of all write. Of course I'd write without the internet but I enjoy writing and reading other people's writings as well.
     26. I am thankful for food. Food is an essential that so many people do not have. We are lucky enough to be able to have a meat every night along with some form of veggie.
     27. I am thankful for government assistance. Unfortunately, I was not able to breastfeed for long and with WIC I was able to get formula for Haleigh. Without this assistance I don't know how we'd be able to afford it.
     28. I am thankful for financial aid which has allowed me to further my education. As much as people complain about the government look at all the help it provides!
     29. I am thankful for beaches which make me feel at peace, moutains which make me feel at home, and sunrises that make me feel closer to God.
     30. I am thankful for all the smiles and laughs I have in my life. All the love and compassion, all the family and friends, all the game and movie nights. My life is filled with great people and amazing times, I am thankful for it all.

What are some things you are thankful for?

(PS - the title of this entry ... #17)


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Sunday, November 20, 2011

Fragile

     I've been having a rough few days. I was planning on doing a huge entry on my Twihardness followed by a entry about the Breaking Dawn party I had. However, my pain has been building for the last week or so and (I hope) it's reached it's peak. I no longer have a laptop to use when I'm in pain so in order for me to write a decent entry I need to be able to sit at a desk top. The only reason I'm able to sit right now is because I took a pain pill, which I'm out of now. If the doctors didn't make me feel like I was a druggie every time I called them then I would have some.
     I feel fragile. If I sit wrong, stand wrong, lay wrong I hurt. If I eat certain foods, if I drink certain drinks, if I eat too little or eat too much, if I drink too little or if I drink too much I hurt. If I don't exercise or if I exercise too much I hurt. If I walk around the grocery store I hurt, if I'm wheeled around the grocery store I hurt. Why am I not getting any happy medium? I'm not new to this disease I've had it for years, I've tried so many things. Why oh why can I not find a happy medium.
     I currently take 11 pills a day. 11. I am 25  years old - there should be no reason for that! 9 of these pills have to do with pain management (and these 11 pills don't include pain pills for when my pain is really bad). Why am I taking so many pills if nothing is helping? If my pain is still between a 3-7 every day without moving then why continue to take this?



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Thursday, November 10, 2011

Traveling with Cloth

    Traveling with cloth is not nearly as scary as I once thought it would be. Granted it involves bringing an extra bag but to be able to show off my fluff, well worth it! This past weekend we drove up to New Jersey to see my cousin in her first play. It wasn’t a short trip but for me I wouldn’t consider it a long trip either. It was about a 7 hour drive with the two stops we made. We left around 8pm so everyone but me, as I was the one driving, slept most of the way there. We stopped twice but only changed her once because she didn’t wake up our last stop.
     When planning our trip I decided what would be best was to have a smaller diaper bag in the car with us and our big diaper bag packed away in the trunk. No use in bringing that huge bag with us into the rest areas plus having it take up space in the backseat. Our small diaper bag aka in car bag had: 2 flip covers, 2 Econobum covers, 2 prefolds, 6 flip inserts (the only type of micro fiber I still have left), 2 good mamas, 20 wipes and a medium sized wet bag. I figured there was no way she would even come close to using all this in the car but better safe then sorry right!
     In our big diaper bag I had 5 prefolds, 1 econobum cover, 1 thirsties cover, 1 Drybees diaper, 1 swaddle bees diaper, 1 kawaii diaper, 1 baby dream eze diaper, 1 Pocket change diaper, 2 bottom bumpers, 2 grovia, 2 mama simple solution pockets, 3 fuzzibuns, more then 30 wipes in a medium sized wet bag and a large or weekend sized wet bag as well. Also I had three disposable diapers (that I had gotten in the mail when I was 3 months pregnant) hidden in case of an emergency. Let’s be honest there is no way a 9 and a half month old was going to go through 30ish diapers in two days but again better safe then sorry.
     I brought ‘easy’ diapers (pockets, AIO, AIT) for my Aunt, who was watching Haleigh while we went to the play and incase, for some reason, any one else was changing her. Tyrone and I prefer prefolds. We go through stages of which diaper is our favorites and not always at the same time. What are diapers some of you cloth diapering parents out there use? What kind do you prefer and do you throw in different ones if someone else will be changing your baby? My go to for someone else changing Haleigh is always a pocket. I’ve found that anything that has a tongue confuses people and prefolds scare people and although I think they are so simple, I would never ask someone who doesn’t CD to use a fitted.
     Back on track, our trip went wonderfully. We had no blow outs, we had absolutely no need to even look at a sposie and like I suspected, I over packed. For days after the trip I was still pulling things out of the diaper bags to change her with. This is our second long trip with cloth diapering and it went wonderfully. Have any of you ventured out for long trips with cloth diapers? Tell us about it!


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Wednesday, November 9, 2011

Wordless Wednesday


Wordless Wednesday Presents:





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ALL words Wednesday

     Before I do my 'wordless Wednesday' entry (by the way I always have so much to write about on Wednesdays) I'm going to show you my Wordle. Thank you to Carla Bubblelush I found a great site, Wordle, that produces "word clouds" from your blog, or whatever you provide. Here is mine.

  
     Maybe, just maybe, I have an addiction with Pintrest. It could also be that I always post on Thursday's about Pintrest and what I need to be doing is writing more often, not just doing Wednesday and Thursday blogs. 

*edit* Now that I'm looking at this more carefully I'm noticing a lot of websites I did not post about and I'm not seeing anything about Endometriosis. How could that be when I posted every day in the month of March about Endometriosis Awareness? 



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Thursday, November 3, 2011

Pin it Thursday - Fall

Pintrest... love it with me









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Halloween

     How was everyone's Halloween? I hope everyone had a great time! We sure did. We decided to go trick or treating with my sister, her boyfriend - Alex, Alex's brother, his sister in law, and their baby, Ava. Haleigh is only 2-3 weeks older then Ava. I was worried we were going to not get to do a lot of trick or treating because Tyrone didn't get off work until 5, home till 5:45, and we still had to drive a half an hour to Angela's house but, I worried over nothing because we had a great night. We waited until we were at Alex's to put Haleigh in her costume because I didn't want her to get overheated in the car. While I was dressing Haleigh we realized we had left the diaper bag at home. Which meant no diapers, no wipes, no formula, no jacket, no extra anything. Thank goodness I had already made her a bottle and threw two heavy blankets in the car. Haleigh was Belle and Ava was a lamb. They were adorable! Haleigh got lots of candy that mommy and daddy are thoroughly enjoying.
Her costume just didn't have enough fluff for me.. so I added a tutu!
At the end of the night I really think Haleigh's favorite part was....
Riding in the stroller on the way back to the car.. she giggled the whole time!



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Wednesday, November 2, 2011