I got a plan, I got a plan, I got a plan HeyHeyHeyHey

Gotta love a girl with a plan! Can you tell I'm in a better mood? First, I am back to just one bcp a day, and the bleeding has stopped, which makes a huge difference. Then, I had my much awaited appointment today. The dr walked in the door and started to say "how are you?" He stopped and said that that is general a stupid question when walking in a room of a chronic pelvic pain patient. I told him that I would have said "good." My little guy is doing considerably better, other than this crap, things aren't too bad. Anyway, the appointment was pretty much to persuade me out of having him do a forth lap, but instead going to a specialist to see what he thinks. We chatted, he explained how he would not want to do a surgery that would need to be redone in 3 months by a specialist. He's right, and I respect him for telling me the truth. I think I fear that I will go to a specialist, and then it would be something that he could have done. Sometimes I worry I'm crazy, and all this is in my head. I think most pelvic pain people feel this way at one time or another. It is the nature of the condition. That "unseen" sickness. Anywho, I got an appointment with a dr who specializes in pelvic pain and IC in 2 weeks. That was so exciting. I am glad to not have to wait too long. I was fine with it, but not overly excited. But then, I got home and looked at there website. If you want, check it out. Here is a part of their mission statement...
At Las Colinas OB/GYN, we feel our patients should be made aware that QUALITY OF LIFE is something YOU deserve!
That is the kind of place where I want to be seen. I feel excited and positive, for the first time, in a long time. I'm not expecting a cure, because there isn't one. But I am looking forward to feeling better. I am super pumped and can't wait. Plus, my ob/gyn was given his name through the RE he uses, so I know I have that connection if/when I need it.

Train wreck

That's how I feel... like a train wreck waiting to happen. I'm a mess, a huge mess. My hormones are nuts. Can I just tell you, I hate bcps. I hate the normal dose, and I doubly hate the double dose. I feel like I'm on the verge of a breakdown. Seriously, if this doesn't stop soon, I will lose it. I can't be a parent, at least not the one I want to be. I miss my baby boy, but don't have the energy to take care of him. I have been getting help with family, and I appreciate it so much, but I want to do it myself. I have a major hormone migraine and will take something for it before bed. I am really struggling. And I hate it. I want to be strong, pulled together, with it, but I'm not, not right now. I don't know what to do or how to feel.

I'm just a wreck

double up

So after 5 days of breakthrough, I decided to call the doc. The nurse told me to double up on my bcp for 3 days. If that doesn't do the trick, then I am to call back. Not sure what the plan is after that. I hate this. I have had to take pain meds most days. This weekend was rough, but I fought through the pain. But I'm tired of fighting. My anniversary is Thursday, and I really want to be better by then. Hubby took off and we were going to go on a real date. We haven't done that in a long time. I really want to feel good. I'm dreading the doubling up tonight. I know it will make me sick. I sometimes get sick when taking just one pill. I am going to go ahead and take my anti-nausea meds with the pills.

I am just tired... So VERY tired.

URG!!!

Well, I would say I am now having a full blown period, cramps and all, 2 weeks into active pills. I let myself have a cycle last pack, after 5 packs without one. I thought it might help straighten me out, but apparently it only made things worse. I didn't start until 5 days after my last active pill, then continued to have it once I started this new pack. It stopped for about a week, and now it is back. I have never had breakthrough before, and this seems like more than just breakthrough. I was in bed all afternoon, but decided to fight through the pain and go to the rodeo tonight. I was glad I did and had fun until the end. My bladder got full, and I got very cold, which made me really start cramping. It turned to curled up, moaning in pain cramping. I now have taken a pain pill and have the heating pad on my back. I am starting to zone out, which is a good thing right now. I am calling the doctor first thing Monday morning, and my appointment is Friday. I'm really hoping to find something out soon.

WTHeck

*TMI WARNING*
It's my blog about my issues, so with warning, I felt I can write about it. Today started out ok. I planted flowers in my front yard. (which look terrific btw). Then this afternoon, I started spotting. It was heavier than just spotting, but not AF. I am on continuous bcp, and have been off and on for years, and have never had breakthrough. Then came the cramping. Midline, down my legs, the bottoms of my feet. And I was in some mood too. I know my hormones are out of wack. I am so glad I go to the dr next Friday. My legs are killing me right now. It hurts so bad. I've never understood why my legs always ache, but they do, and have for as long as I can remember. I thought today was going to be pain free, but I was wrong. I am thinking I may have to take some pain meds before bed. We will see how long it takes me to fall asleep first. On a happier note, I am getting a new lens for my Nikon, and I'm super pumped about that. Anybody watch Grey's tonight? Man it was something. I am exausted now!

happy birthday to me!

Today was a really good day. Best one in a while. I had very little pain today, which was great. My mom fixed me a great G free salad lunch. We had chicken salad, my favorite green salad, fruit salad, and I brought a rice pasta salad. My sis made a gf angel food cake, and we had strawberry shortcake that was YUMMY! Then we went to the annual rodeo parade. It was hot and redneck city, but it is a tradition and part of raising Cooper here. Then for super I ate with my sis, and we made gf and dairy free brownies that were great. I will share the recipe soon! Hubby just walked in from work with a dozen white roses. It is been a good day. Oh and I forgot to mention, I gave Cooper a peice of my cake. It was made of all safe foods except for egg whites, and it seems to be a success. If so, he may just have a bday cake this year after all! Here's a pic of me and my lil man. He totally was trying to get out of my lap, but whatever, it is a picture of the 2 of us, which is few and far between!

Interesting

So my dear friend Erica shared this link with me today, and I thought it was interesting enough to share with you. It confirms it for me about the Celiac thing. I mean I just have too many symptoms for it to be anything else. Check it out if your interested
http://www.celiac.com/articles/21636/1/Gluten-Sensitivity-and-Bladder-Disease/Page1.html

Also, I have another endo friend who is in need of thoughts and prayers. Jenifer is struggling right now, so just think of her. This endo is an aweful disease. It can easily control you life and take away your spirit. She is much to precous for that! Hang in there girl. I know it sucks and sure aint easy, but I'm praying for you.

My birthday is tommorow, and my wish is for a pain free day. Will you wish it for me too?

Why do you hate me?

Today has been a day. I was accidentally glutenized this weekend and have been paying for it all day long. Ok, so I think I failed to mention that I can no longer tolerate wheat/gluten ever since going off it to nurse Cooper. I am self diagnosed Celiac these days. I fit all the symptoms, but can't get a positive diagnosis because I have been off gluten for too long. I know I have some sort of gluten intolerance, be it Celiac or not, so I am living the G-free life now. Eating food that I didn't prepare and packaged foods with hidden glutens all weekend long caught up to me today. My energy was gone, I have a headache, and I have the lovely tummy issues that comes with the territory. I think it's almost over though. I have got to be more cautious and more prepared.

Here's my question though... Why does my body keep attacking itself? What is off? How can I fix it. My chiro believes that there is a cause for everything, something out of line. So what is out of line with me? My body attacks my hair follicles, and makes my hair fall out. Alopecia. I am lucky to have post pubescent onset though, so only a few bald patches that are easily covered. If I do in fact have Celiac, then when I eat wheat/gluten, it causes my body to attack itself. I believe that endo and IC are also auto-immune. My uterus produces a lining as it should, but instead of staying in the uterus, it grows on my bladder, ovaries, uterosacrels, and then bleeds when I cycle. My body doesn't like this bleeding, so it reacts. With the IC, my body causes irritation in my bladder, for no known reason and can even produce ulcers as a response. So, I can't help but wonder, why? What is causing this? I will probably never now. I'm ok with that, but life would be easier if I could figure it out.

the question

"Are you guy's going to have any more?"

I can't tell you how much I hate this question. I don't know how to respond to it. Really, I don't, no matter how many times it is asked. I try to think of something witty to say, prepare myself for the inevitable, but it never comes out the way I planned, and it always catches me off guard. There are several reasons why I don't know what to say. Honestly, I don't know the answer. I mean, really, none of us do, but we generally think we do and have a plan. But, right now, I don't. I don't know if I want to do the whole IF crap again, and we only tested the waters before, never had to dive deep into them. There isn't an RE within 3 hours of here, and I won't do anything with a gyn. They don't monitor as closely and I got OHSS with Cooper, so I wouldn't want to take that chance. I don't know if we would be able to get pregnant on our own. My RE seemed to think it was unlikely. If we can't and we decide not to go the IF route, then we won't have anymore. Then there is the issue of carrying a baby. My body has been through a lot; my uterus is weak. I was put on bedrest and meds at 24 weeks with Cooper. What would that mean for next time. My uterosacrels have been cut, more than once. I carried Cooper so low, because they weren't strong enough I believe. I had an xray at 31 weeks and the 2 techs thought he would be born anytime because we was so low in the pelvis. This scares me. What if next time I can't carry to term, despite medical intervention. Having a baby in the NICU 3 hrs away while having a little one at home is an overwhelming thought. So, maybe there is a part of me that is fine with just one. Happy and satisfied and done. I think there is, but the other part of me is bigger. The part that wants for Cooper to have siblings. I am so close to my own, I can't help but want that for my own child. Then there's that part of me that is in pain. The part that says, just get rid of it, be done with this all, have the hysterectomy. It is going to happen sooner than later. I have been told it would be done before 30. Somedays that terrifies me, then days like today, when I'm hurting, it can't seem to come soon enough. It is so final though; that is the scary thing. Today, I was holding my abdomen; I didn't even realize it, but I was; I was hurting. Someone asked me "Molly, are you having more babies?" At first, I thought oh great, this dress makes me look fat. I responded, "Oh no" and she replied, " I thought, oh poor think, she must have babies kicking in there." This took my breath away, knocked the wind right out of me. Babies? Poor thing? I would love to have babies kicking me, it would not be poor thing. It was one of those moments that pulled out the one in me that wants more. For a moment, I wished I could've replied happily, "yes I am." But, I'm happy today with one, not ready for another yet. But, I still think about the future, the what ifs. Don't we all? My best friend is pregnant right now. I couldn't be happier for her. Her road was not the short, fast one either. I took her maternity photos on Saturday. She is glowing, so happy. Her nursery is perfect, and ready for baby girl. Her belly is big and beautiful. That made me want more. I want to take maternity photos, I didn't do it the first time. I want to have a perfect new room. I'd love a little girl, for Cooper to have a little sister. (I'd love a little boy just as much) It is those moments that make me hang in there, fight through the pain, because I don't know where will go in the future. I just don't think I'm ready tho take the option off the table.

So, I smile, I giggle, I say "only God knows." But inside it tears at me a little. It starts a battle between my two sides. See why I hate that question?

Where I am now

Cooper's life has been filled with trials we never could have imagined. He is one tough little boy who has been through so much, but seems that he is finally making his way over the hill and turning into a healthy, thriving boy. I thank God everyday for healing our son the way He has. I finally have some time to look at my own health now.

My cycle was suppressed while nursing Cooper; it was so nice, but I still had pain. It varied from time to time, but there was one particularly awful time when I worried I might have an ectopic pregnancy. Not sure what that was about. I got a shot of toridal and quickly recovered. I have seen my RE once since delivering. He told me he wanted for me to be either pregnant, trying to get pregnant, or completely suppressed. He never wanted my cycling, because if I am, it is inevitable, endo will grow. Of course I believe that the Lord is capable of healing me of this, but am fulling accepting if He does not. I asked about our future of conceiving and if he believed I could conceive on my own. He said, it would be fine to try a few months on our own, but would put me back on injectables in a heartbeat. As soon as I got my cycle back after weaning Cooper, I started on continuous bcp. I have only had one cycle since and it was difficult.

During my pregnancy, I had a boat load of issues. I had pre term contractions early on due to a kidney stone. It blocked my kidney at 31w, and I was forced to have a stint placed inorder to renew kidney function. It was awful. Once delivered, I had lithotripsy to break up the stone, then had the stint removed. My bladder has never been the same. I had multiple occasions with symptoms of bladder infections (blood in the urine, flank pain, ect) but no infection present. I would empty my bladder, stand up, and need to go again. I can go some time without a bathroom break, but once I go, I need to go over and over. I have pain often, with all sorts of activities. I stumbled across IC, and began to see how I fit all the symptoms. I mentioned it to my obgyn, and he kind of wrote it off at the time. He suggested I try pelvic physical therapy to retrain my muscles and bladder. I only went a few times; I think it could have helped, but it was hard to find the time with an often sick baby.

I have come to realize that I have some degree of gluten intolerance. I believe it is Celiac, but am not officially diagnosed. I am completely gluten free and vastly dairy free now, which can be helpful for endo. My pain has recently gotten increasingly worse, and I haven't had a lap since Oct 06, so I decided it was time to schedule one and see what is going on. Before I could get it scheduled, I had a bought with severe pain. They had me go for a urinalysis. It came back with lots of blood present. That explained it, I had a raging infection. But the culture came back clean. There was no explanation for the blood. I told my obgyn and asked if this could be from endo on the bladder. He said it was possible, but felt that it was more likely from irritation in the bladder, aka IC. He is wanting to find me a urogyn. I am tentatively scheduled for a lap on June 11, but have an appointment on May 22, so things could change.

That's where I am now. I'm in some sort of pain every day. I can't wait for that appointment. I am trying to learn what I can about IC, and work through my emotions here. It is hard to think of another diagnoses that doesn't have a cure. It is also hard knowing I can't just get rid of my bladder as I plan to with my uterus and ovaries. The good thing is, I far as I know, this won't further affect my fertility, but I don't know what our plans are with that anyhow. That is for another post though. I'm trying to deal, and remember that God is sovereign. That this is only for a season, even if that season last the rest of my life. I will one day be healed. I have to remember that. That is what keeps me going.

What happened next

He brought us into his office, sat us down, and gave it to us straight. Before that moment, I was naive; I didn't think I was naive, but I was. He gave us a plan. Really a plan??? I kinda just thought I would get my period, chart a cycle, and then, ya know, and it would happen. Ok, so I wasn't that naive, I knew there was a chance we would need help, but I figured we would at least get 6 months on our own. No such luck! He gave us a plan to start injectable gonadotropins, followed by an hcg injection, and then 2 IUIs. Before that, I would have a HSG and dh would have a semen analysis. We checked our insurance to learn that we had coverage for testing but not for treatment. I left the office in a state of shock. My life would never be the same.

We had our testing, I ordered my meds and set up an injection lesson. I was scared but excited. I was naive. I had my baseline ultrasound and got the all clear. Dr. S dosed me for the first time. I went shopping that day with my sister and the kids. I bought myself a new eyeshadow set from Sephora, I guess as some sort of memento or something, then 6 'o clock came, and I walked into the Nordstrom lounge, gritted my teeth and did it. My life would never be the same.

Morning after morning, day after day, I would go in for early labs, to check estrogen levels, afternoon vaginal ultrasounds for follicle checks. 13 days of injections and things looked good, we had our IUI, and now for the wait. Did I mention it was Christmas time. I just knew I was pregnant. It had to work. I was naive. A few days after Christmas, I got a phone call. It should have been happy, and it was, but it was hard. It was my sister-in-law. She chit chatted, talked about God's plans for our lives, bounced around the reason for the call. I got this lump in my throat, this empty feeling in the pit of my stomach. I knew what was coming. I felt so bad for Tracey for even having to tell me, but she was gentle, so kind. She told me she was expecting. This would be her third; they thought they were finished; this was very much a surprise. She apologized, I told her it was fine and I was happy for them, and I was. But oh how it stung. I have never shared those feelings before, because it is hard, and I don't want any hurt feelings, but that's what this blog is about. MY feelings. We went home for Christmas, we looked at the calendar together, discussed dates, and how close our children would be, if indeed I was pregnant. I knew I was after all. Things were just great that cycle. I was already feeling ill. Bloated belly, nausea, all good signs. Christmas came and went. I POAS daily continued to see one line. On New Year's Eve, it was official. I wasn't pregnant. Happy freaking New Year! My life would never be the same.

I went in for my cd3 u/s to learn I had a lovely residual cyst. My doc said there was no way I could do injectables that month. If you know me, you know that patience is not one of my greatest qualities. He wanted me to go on bcps, but I asked if we could possible try clomid that month, so it wouldn't go to waste. He said if the cyst got small enough, he'd be fine with that. The cyst shrank, and I began clomid. I didn't really respond so well to it. I eventually got one mature follicle and ovulated. The dr didn't think it was worth doing an IUI, so we tried naturally that month. Not to anyone's surprise it failed. I went back on injectables for the next cycle. The cycle was slow, response was crap, so Dr. S decided to push me a little more. Things started to look up. Then, I was slapped in the face by the witch that is infertility. My ovaries decided to start doing what they were supposed to do, and follies grew like weeds. Since we were openly opposed to reduction, the cycle was canceled. It hurt so bad. Every injection, every lab draw, every ultrasound, every penny, all for not. That was the first time the doc mentioned IVF. He told me he felt it was time. He worried with my being so "tricky to medicate" and history with quickly growing endo, it might take to long to go the IUI route. That was the first time I cried in his office. I told him it wasn't supposed to be this way. I told him we had no coverage and no way could we afford IVF. He told me he would work with us and would put us on a study wait list. He agreed that until then, we could try one more cycle. He hugged me before leaving the room, told me he hated to see his patients to leave without a baby, and expressed how he truly desired it for each and everyone of them. He was so human in that moment. It was a great moment in a horrible day. I left confused, overwhelmed, and unsure of the future. My life would never be the same.

My body was eventually ready to cycle again. This was it. One last try at least for a while. I was so scared and had no expectations of it working. I began to throw myself into the IF world and learn all I could about IVF. I found IVF connections and met wonderful women in my area who had gone through infertility hell that no one should ever have to suffer. The cycle was crap. It was slow, my e2 wouldn't rise, lining wouldn't thicken, follies wouldn't grow. I stimmed for 15 days. I remember them having to get a second sheet for my dosage because they only went to day 14. I finally was ready for trigger and IUI. Things looked good; he gave me high chances. Then came IUI number one. Sperm was crap, basically bad enough not to even use, but he reminded us it only takes one and hoped for a better sample the next day. IUI 2 was better. As I lay on the table, I prayed for a baby. I wanted it so bad, I needed it. The wait was on. About 10 days in I started having symptoms of OHSS. It was bad, painful, but a good sign. OHSS is more likely in conception cycles. 11 days after my IUI I saw what every IFer hopes to see, 2 lines. It was faint, I rushed for a digital. I was pregnant. I could write for days about my pregnancy, but I won't. After a trying pregnancy, our beautiful baby boy, Cooper Jack, was born on December 21. My live WILL never be the same.

I have to take the time to make an important point now. My suffers with IF were nothing compared to many out there. I know so many in blog world that struggle beyond belief. Take my IF friend Larisa for example. She has endured more than anyone should in her journey for a baby. I never want to make my situation seem worse than another, because it's not. In the IF world, I was a lucky one. I know that. I am so thankful for that. But I still suffered. It still hurt. It still does. It was still hard. It still sucked! I had to walk the road, and it still changed me, even though I am a lucky one. I don't know what the future holds, but I do know I'll have Coop by my side, and for that I am thankful beyond belief.

Where to start...

I guess the beginning. I have suffered from pain as long as I can remember. I remember waking in the night in awful pain. I went to my parents room, doubled over, telling my mom my stomach hurt. I didn't know how else to describe it. The next day I got my first period. I was 12, and my life would never be the same.

From then on I had pain from month to month, often missing school. At 14, the pain was severe enough to land me in the ER. I could barely walk. They found blood in my urine, but no infection. I was sent to a urologist for a possible kidney stone. He performed an IVP... no stones present, he checked for a hernia... no hernia, he said, "I think she has endometriosis." My life would never be the same.

I remember crying in the parking lot. What did this mean? I was so young. I fought the pain for a couple more years, going on rx anti inflammatories and pain meds. Then, at 16 I finally went to the gyn. She was awful. I didn't feel comfortable. She agreeded that it was probably endo and prescribed celebrex and bcp. The celebrex never helped. The pill helped a little. I eventually went on the pill continuously and saw some relief. I missed a lot of school, but made it through. I was scared. I struggled a lot. I turned 18, moved out of town, and found a new gyn. While seeing him, I got off the pill and had my first lap. Extensive endometriosis. I remember that. I don't remember much, because I was groggy, but I remember that. It was on my bladder and ovaries. The recovery was hell. Every time I peed, I thought I might die. It was official, I had endo... my life would never be the same.

He suggested depot Lupron, I googled it and said, "no thank you!" My first period after that lap was some of the worst pain of my life. I remember lying in the bath in my apartment; I could barely move. I remember calling my mom in tears, hardly speaking. I was doped up on vicodin. I missed class after class. After that I got engaged to the love of my life. We would marry in May. Cycle after cycle, I was in pain. I didn't know what to do. The cycle before my wedding fell 20 something days before my wedding, meaning I would be on for my wedding. That would not do. We had this beautiful wedding planned, and a Mexican honeymoon. I wouldn't even be able to make it down the aisle. I went back on the pill, and started searching for a new doctor. My sister was looking as well, and she had found someone. Following out wedding, I had my first appointment with Dr. Silverberg, a reproductive endocrinologist... my life would never be the same.

He was wonderful, knowledgeable, and a little arrogant, but I didn't mind, he deserved to be. He scheduled my second lap, just 10 months after the first. He found endo on my ovaries as well as nodular (or a tumor as he worded it) endometriosis on my uterosacrel ligaments. He excised it, sent it for biopsy which came back as endo, no surprise. At my post op he urged me to consider Lupron. He was confident, and said "what are you so worried about?" The truth was, I was worried about everything. I was going to be in menopause. That is not normal. What would this mean for my new marriage? What would this mean for my future? I figured, I didn't really have any other options. When I went to pick up my first injection from the pharmacy, I bought a fancy box of chocolates. After all, I was putting myself in menopause the next day, I deserved it. I went to the RE's office, evil injection in hand, and my sweet nurse Jen gave me the shot and an rx for hormone replacement therapy... my life would never be the same.

The side effects were tough. Hot flashes, mood swings, low libido, all that fun stuff, but the pain was less. It was a relief, for the first time, in a long time. I continued to do the monthly injections until I felt good enough to give bcp another try. It didn't last long. The pain returned. I went back on Lupron after a few months off. In Oct 06, I had another lap. One of my ovaries was adhered to the wall, there were a few patched of endo he removed, as well as removing portions of my uterosacrels. Recovery was easy. I went to my post op; he gave me "the talk" letting me know it was time to consider having a baby, if it was something we wanted. I was game, but dh would need some persuasions. I got one last lupron shot and set up a fertility consultation. The consult came... my life would never be the same.

I will leave it at that for tonight.