I’m a Machine!

Over the last few weeks if there is one thing I have realized, it is that I have a bazillion things going on at one time, and somehow I am equipped to handle it all. Whether life is hard, or it is running smoothly, this body and mind of mine are a machine. I am a machine.

Update on the PET Scan and results: My oncologist said that the one node that is concerning in my neck near my jugular vein cannot be biopsied because it is too risky, but that is the only way to diagnose Lymphoma. He wanted to take a wait and see approach even though he cannot explain the crazy levels that seem to only be present in Lymphoma. Dr. Wonderful (my primary) is not satisfied with this wait and see method. She referred me to a local cancer specialist. I have an appointment on Monday with a Lymphoma specific specialist. Hopefully I will get answers other than “let’s wait and see if Cancer will deveop and spread through your body before we have a plan of action”.

Update on Mickey’s Not So Scary Halloween Party: We had an amazing time with our friends. We trick or treated through the Magic Kingdom, rode the carousel, saw the end of the parade, watched the castle show and fireworks (which were the best fireworks I think I have ever seen at the Magic Kingdom!), and we got to see some really cool characters that we don’t normally see (Jafar, Lotso Bear, all 7 dwarfs, and Mickey dressed in his Halloween best!). We also got lots of comments on our homemade costumes.

and last but not least my running progress: I shaved THREE minutes off of my original mile timing! I ran two miles yesterday and two miles the day before. My most recent run yesterday I had a 13:27 minute mile, and the second mile was 14:10. I am still so shocked at what my machine of a body can do. I also have had a cold thanks to the lovely germs that Lucky Charm brings home from school – so I can’t imagine what I am capable of when I am feeling normal (as if that EVER happens!)

My weight is dropping slowly and steadily but I feel good overall. My bleeding has finally stopped for the last three weeks and I am praying this is a sign that my hormones are starting to regulate now that I have lost a chunk of my body weight. As of now I have lost 50% of the weight I have to lose. This is incredible in just four months. Gastric bypass has changed my life. I could never have accomplished this on my own with all of the health complications I have been plagued with.

That’s enough of a crazy sporadic update for now! Hope you all are well and making progress in your life journeys.

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Healing

Yesterday I was working from home because I caught a bit of a cold, and Dr. Oz was on in the background. He had a segment about Crystal Sonic Therapy and how it can do wonders for healing clarity, pain, relaxation and sleep. I decided to download one of the CD’s on itunes to see if it helped me any, and I have to say it is VERY relaxing. I am sitting at my desk listening to it with headphones and it really is amazing how powerful it is. If you are struggling and you can take the time to listen, I highly recommend it even just for relaxation because I’m not sure I’ve personally experienced any other benefits from it so soon.

My lucky little family and I are starting therapy on Friday. It is going to be good for us. Mr. Lucky and I have some things to sort out stemming from our infertility and growing our family. Mr. Lucky really wants me to get pregnant. If you didn’t know by now, I’m infertile. However, weight loss surgery changes things for some people. The sudden weight loss can make people who were previously infertile, very fertile. For that reason, my surgeon and nutritionist have recommended that we use protective measures to avoid pregnancy for the first 18 months after surgery. When I told him this, he was bothered by the fact that I would want to prevent pregnancy after all we have been through. The truth is, I really don’t want to ever be pregnant. I am ok with building my family through adoption, I’m even ok with Lucky Charm being our one and only. He isn’t. He keeps talking about me getting pregnant after the 18 months and we really need to get this resolved. I don’t like to continuously disappoint him, but isn’t it time to put my own needs and health first? When we were going through fertility treatments, it was my body that was violated and attacked by hormones, not his. Nevermind that I am still bleeding profusely so the opportunity to get pregnant is NOT there. It is going to take alot of time for my body to re-adjust to hormonal changes, but hopefully soon I will get a break from bleeding.

I am finally below the weight I was before we started treatments (270). My next goal will be to be below the weight I was at our wedding (228). I really don’t ever want to be back here again, and the thought of pregnancy and gaining weight after all of this hard work scares the pants off of me. Nevermind having been through an incredibly painful back surgery and recovery.

Cruella

I have officially named my pouch, Cruella. The “pouch” is the new stomach created from the gastric bypass. Cruella is very temperamental.

CruellaSo far, she does not like cottage cheese on a regular basis. She also does not like sandwich meat. Then she decides on and off to like or dislike foods that she may have had the opposite opinion of the last time it was eaten. She is confusing, and causes me much grief!

Another thing that causes me grief these days is the scale. I have lost only 4 pounds since the last time I wrote. I am grateful for any loss, I just feel like living off of 600-800 calories per day deserves more. I know that people are noticing differences in my face, and I can no longer wear my work pants, so I am celebrating those small victories instead. I know where I can improve in my lifestyle and I plan to make those adjustments.

As of 5 weeks post surgery, I have lost 37 pounds and have dropped one size.  I am free of all diabetes related concerns and medications, and I am off the Diamox for the Intracranial Hypertension. Right now I am taking a few medications; zoloft, thyroid meds, and prevacid for the issues with the pancreatitis. Oh, and my bariatric vitamins.

This week was supposed to be my last iron infusion for this round. They cancelled me last week because I developed hives two days after one of my treatments. So I will meet with the hematologist this week to determine what the next step is. Of course, since I have come off the iron treatments my bleeding has increased ten-fold and I can be safe in assuming that my levels have probably tanked all over again.  As much as I wish the bleeding and anemia had resolved by now, I am grateful to have the diabetes and IH symptoms gone.

As far as my workouts are concerned, I am hitting between 6,000 and 12,000 steps on any given day. I track my steps using Jawbone UP and I love it. It also helps me track my sleep (which is a mess!). 10,000 steps translates to roughly 5 miles. I am looking forward to the start of my running routine. I am confident I can handle the training, but I am not looking forward to running in this heat!

Lucky Charm is also having a bit of a rough time lately. She is starting to comprehend (as much as an almost 3-year-old can) who her birthmom is. We have short conversations about her, and she has spoken to her on the phone. She has also seen a picture. She speaks of her as if she is HERS (she is!) and she is very proud when she talks about her. I don’t know if she is processing her loss, or the trauma she experienced, but after my hospital stays she has been having a very hard time sleeping, and she is acting out quite a bit. Some of her contrary behaviors I know are probably typical for her age, but the aggression is hard. I wish I knew how to handle it better. I contacted a therapist who specializes in adoption and I hope to get some insight.

As far as my career change, I wish I could say I had positive news. I contacted someone about this potential career shift and they did not have positive information for me, but I won’t give up. It has just left me with the thoughts of, what in the world do I want to do with my career? What field can I work in that will give me the pay and satisfaction I desire of a job? What kind of certifications can I get to make me more valuable?

So far, I am coming up empty handed. So yes, I am in limbo mentally with SO many things right now.

Until next time.

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Carrying The Weight of my Health on my Shoulders

After my Intracranial Hypertension (IH) diagnosis, I was cruising along with the adjustments of adding Diamox and it’s lovely side effects into my life. Things were going somewhat normal, my back pain was improving, and physical therapy was complete. One night in June, I had pizza for dinner, and woke up in the middle of the night nauseated and in a ton of pain (abdominal). I tried to take a vicodin to relieve the pain, and I tried a bath. The pain continued to worsen over a couple of hours so Mr. Lucky took me to the ER.

While in the ER, they told me that my liver enzymes were ALL off, indicating something was going on, and my CT scans and ultrasound showed fatty liver, but no kidney stones, or gallstones that were visible. They sent me home strongly emphasizing that I needed to be tested for Hepatitis based on my liver counts. (Which all ended up negative)

I followed up with a GI doctor, who recommended an Endoscopy. He mentioned that the Diamox could cause increased liver enzymes/chronic liver failure (yep – that’s right now I am 28 with a chronic liver failure diagnosis too!). The Endoscopy came back completely normal and the doctor suggested it indicates more of a gallbladder problem. I was instructed to schedule a HIDA scan as part of my post-operative instructions. (Which I still haven’t done – I’ve been dragging my feet because it’s a pain in the butt!)

During the ER visit, it was also discovered that I had some pretty severe anemia, so Dr. Wonderful told me to take Iron supplements. I took them, and burped them up a million times per day. My iron levels still weren’t improving because I was still bleeding heavily. (When am I not? The times I am not bleeding = probably 6 weeks out of a year total, and I rarely get more than one week solid without it) So she then referred me to a hematologist for iron infusions.

So I began my quest at the local cancer specialist who does the iron infusions, and started with them once a week on Fridays. I was not permitted to drive because apparently there is a chance of allergic reaction to the medication so they pump an IV full of Benadryl first. The first infusion was uneventful (other than being a hard stick for ANY bloodwork or IV’s). I slept through most of it, and noted that I needed to bring a blanket next time because the room was cold. The nurses were very nice, and the patients were too. There were many tv’s on in the room to help pass the time. I was there approximately 3 hours for each infusion. The Benadryl made me so groggy I would often sleep the entire day away which made it difficult to care for Lucky Charm. Thankfully, my sister and Mr. Lucky were around to help pick up the slack on these days. I went for infusions for 6 weeks. At the end my iron levels were one number below the low end of “normal” but they said it should continue to go up over time because of the infusions.

Eight weeks later, I went in for a re-check, and they are low again. The nurse practitioner tells me we need to really buckle down and get to the bottom of the root cause (my bleeding) and that a hysterectomy would be necessary to alleviate this and the anemia. I told her it wasn’t that easy, but I was frustrated with all doctors at the time. How can I just go get body parts removed when there is no good explanation for why this is all happening, and how they all have some relation to one another. Where do you start first?

This led me to the discussions with Dr. Wonderful about weight loss surgery.

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The Tortures of my Uterus

Now that we are getting into our Adoption Journey, I can catch you up on what’s going on with my health.

As a WARNING – some of this can be a bit graphic so if you are squeamish you may want to skip around.

At the time of applying with our agency to adopt, I had only been diagnosed with PCOS and the thyroid conditions.

I was already overweight though. I always have been. Its genetic, its emotional, its environmental. I’ve never known a life different.

Before our wedding, I had lost over 50 pounds with the help of the points system program. Mr. Lucky even did it with me leading up to the wedding.

After fertility treatments, and the emotional roller coaster that took us on, I gave myself an excuse to eat whatever I wanted, whenever I wanted, and the weight slowly crept back on. I was approximately 30 pounds heavier before starting IVF, and after IVF 50 pounds heavier – so I was back to where I started before we got married.

After the IVF failed, I didn’t bleed for several months. It was approximately May or so of 2009 when I started bleeding, and it was horrendous. I had NEVER gushed blood the way I was. I had never experienced the clotting that was being purged from my body. I expected “my normal (far from normal normal)” period of three weeks. After all, before fertility treatments I could go a year without bleeding, and then bleed three weeks, and then I was done for another year or so.

The bleeding didn’t really stop, so I tried hormones to stop it at my ob/gyn’s advice. It didn’t work. Nothing they gave me would stop the bleeding. Sometimes the hormones would work for a couple of weeks, and then the faucet turned back on.

After our daughter was born, our hearts were so full with joy that we were ok going back on birth control for a short period of time to stop the bleeding. Well, that didn’t stop it either.

Just so you can get a clear picture of how bad things were, I would bleed through a pad in 30 minutes, and when I stood up it would gush so I could feel it pouring out. Often, I would bleed through my pad, panties and pants. I have had to stop to buy several pairs of new pants because of this. I ran to the bathroom every 20 minutes to change supplies, and I tried to enjoy every waking moment with our daughter. The pain that went along with it, was sometimes excruciating.

One day, I was in so much pain I could hardly stand it. I had already been in the ER once, and I knew they would do nothing for me. I spent the day on the couch lounging with my little girl, and trying to keep her happy and occupied. That night, I was experiencing the worst cramping sensation ever. I would try to go to the bathroom, and it didn’t help. My last resort was a hot bath. I was so uncomfortable I couldn’t stand it. I called my mom crying after the shower because I knew I needed to go to the ER again, but I was afraid that they would send me home saying the SAME thing, but I knew something was wrong with the way I was feeling. It was pain like nothing else.

I frantically tried to reach Mr. Lucky, and a friend of mine to come over and watch the baby until he came home for her. I couldn’t reach either of them, and I almost called an ambulance. Thankfully I was able to finally reach my friend and she and her boyfriend came right over. She stayed with Lucky Charm, and he drove me to the hospital. He kept asking me if I was ok, and I was. The pain had finally subsided, but it had been so bad I still needed to get checked out.

After checking in at the ER, I was called back into triage before I could even take a seat in the waiting room. As I was walking with the nurse, I felt something coming out of my body, I told her in a panicked voice that something was coming out of me right now and I needed to get to a bathroom. She asked if it could wait. SERIOUSLY?! I am telling you something is coming out of my body and you want me to wait?! I told her no, that something was really wrong, and I started crying.

When she let me in the restroom, I didn’t lock the door because I was afraid of what would happen if I did. I could feel my body contracting and continuously purging matter into my pants. Disgusting, I know. But it was seriously HORRIFYING. What fell out of my pants when I made it to the toilet was even worse. I had lost so much tissue on the floor of the bathroom (it all just fell out) that I started crying hysterically and hyperventilating. More was coming out into the toilet. There was blood everywhere. My pants were SOAKED. There was matter the size of a football (if you combined it all) on the floor of the restroom. During my hysteria the nurse was asking if I was ok through the door, and I kept saying no. She opened the door and the look on her face was of horror. She couldn’t believe her eyes either. She reassured me that if we could get me cleaned up, they would come clean up the restroom. I was hoping that they were going to take some of the matter for testing, but they didn’t.

She brought me back into the triage room, and afterwards asked me if I was ok waiting in the waiting room for a room, and I broke down crying again. I was literally so soaked in blood that she had to lay down sheets on the chair to soak it up. NO I wasn’t ok with that. So she had someone get a wheelchair and get me into a room right away. When I explained the situation to the physician it was as if he didn’t believe me and thought I was exaggerating. I thought surely the nurse told him, or someone how bad it REALLY was. I should have taken photos. I was horrified though. I was scared and alone, and I thought I was DYING. After pain meds, an exam, and an ultrasound, they determined again, there was nothing they could do for me but manage my pain, and that it was all hormonal and I’d need to see my doctor. So I did.

Mr. Lucky managed to get out of work in time to pick me up AFTER I had been discharged. I was furious with him for not getting there sooner. It was the worst experience of my life going through that, and being there alone.

At my follow up it was determined that my next step would be a D&C. The ultrasound in the ER noted that I still had significant levels of endometrium built up, but it wasn’t anything “awful” according to whatever standards they use. This was my first surgery, and I was nervous. It was long, painful and awful, but it was worth it. The doctor had estimated a 15-20 minute procedure, but there was so much tissue to remove that it took almost an hour. After the D&C my bleeding stopped for a good portion of time, which I was grateful for. I was going to focus on getting my weight down, and try to control my cycles (using progesterone therapy to induce a bleed on a regular basis so it wouldn’t get out of control).

When I met with my doctor for a post-op visit she informed me that I woke up two or three times (I can’t remember now) during the surgery and she was sure I remembered it. I told her I had no idea. It explained why I had such a sore throat afterwards, I must have tried to pull out my breathing tube.

She also said that she left the room feeling 100% sure that my biopsy results were going to reveal cancer, because she had seen cancerous tissue before, and mine was worse. My biopsy results however, were clear, and she was amazed, but happy to report this news.

Most amazing of all, every doctor that I saw was always amazed that I was never anemic with all of the blood I was constantly losing. My hemoglobin was always fine.

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