NAKED & RADICALLY HONEST…

For all of you who have called and emailed and are wondering, I am hanging in there. I am sorry I have been so poor at returning calls.

I am having migraines, which I blame on the fact that the day I checked into the hospital they wouldn’t let me take OR give me my migraine preventative med…. ya know.. 4-5 days without that is just long enough to bring them on!  My neck hurts very bad, reminds me a lot of the last time I had a tube for surgery - I swore they must have tried to break my neck. Same thing all over again, hurts like they tried to twist it off! My tummy hurts, the muscles and wounds are healing. I have 7 incisions and lots of stitches. It makes all kinds of funny noises whenever I eat or drink anything. I pretty much just drink, little bits at a time, and have eaten some jello and that sort of thing. OK OK OK so I did manage to eat a little piece of chocolate on Easter. It went down just fine, thanks :) :)  Sleeping is difficult because “rolling” is hard and I am not a back sleeper at all….. but it gets easier every night. I am VERY happy to be home in my own bed!

I take my pain meds, walk, sip, nap, walk, sip, nap, and take more pain meds. That’s about the extent of my days so far. I have managed to lose a whopping 27 pounds already!!  And no they don’t suck anything out when they do this procedure either so that is actual weight lost - there was not actually anything “removed” to make me lighter. I can see weight loss in my face and I can feel it in my legs and feet (they don’t hurt so bad when I walk now). Tummy a little too swollen yet to really notice anything there.

Everyone else in the house is pretty much sick, Matt is the worst. He took this week off to take care of me and he has ended up very ill with a cold/flu thing. He and Charleigh have bonded A LOT by laying on the couch, cuddling, freezing, sniffling, together. She pretty much won’t leave his side now. It’s pretty cute but she is sure going to have a hard time when he goes back to work.

OK well almost time for American Idol so time to go! Gotta go watch my David Cook!! My MP3 player with all his songs on it really got me through the miserable hospital stay so I gotta repay him by watching and voting. :) No, he is not the 16 yr old and no, he is not the ex-stripper. He is the awesome rocker one (the one plastered everywhere on my page!!!). Just so ya know.

OK Happy Day everyone!

I will tell you this much. It hurt. It’s been 5 days. I was miserable, completely miserable for the first 3, semi-miserable on the 4th, and now I am “ok” IF I stay on top of the pain medication. My stomach hurts quite a bit, but my neck and back might hurt even more I think. Rolling over to find comfort is only now becoming an option, and I have to do it carefully. I don’t remember a whole lot from the first day. The morphine was good but it made me sooo sleepy I just wanted to close my eyes the whole time. But I stayed on that PCA like crazy! No way did I want that stuff to wear off. Everytime I fell asleep I would wake up like 20 minutes or a half hour later in pain realizing that I hadn’t pushed the button (legally only the PCA user is supposed to push the button but if wasn’t alone I guarantee I would have had my hubby pushing it every 10 minutes for me so I could rest). Speaking of not having my hubby with me, he had to be out of town for work and I couldn’t even reach the phone to call him. He was worried sick all day until he finally called the nurses’ station and asked them to release enough info to let him know I was alive!! I was very very lonely without him there to help comfort me so that was hard. It was harder than I thought it would be. The nurses and CNA’s were nice, but, they didn’t go none too far out of their way to be really COMFORTING and helpful. I wasn’t terribly impressed there.

So I checked in on Tuesday night and they said I couldn’t take any of my meds anymore right. So no Yaz (birth control pill that I am trying to see if I can avoid having a yucky period every two weeks). Why am *I* the only one who can see this coming?? I am not a doctor OR a pharmacist, why didn’t they (doc or nurses) see that this would happen….  Day two after surgery, in dire pain, still have a catheter in - oh yeah, fun - can’t move myself around hardly at all even to just find some comfort in the bed and BAM. Here comes Aunt Flow (period) aka menses aka huge pain in the rear. Two days OFF the Yaz and the period shows up, cramps, clumps, and all. WHO NEEDS THIS when they just had their guts rearranged?? And why didn’t they do something to prevent that like, I don’t know, let me stay on my meds??  I won’t even get into how badly it feels to sit there not knowing when the blues are going to hit even harder because they won’t let you take your zoloft and wondering when the migraines and palpatations are going to strike because you’re going through withdrawal from the migraine prevention med which just so happens to be a med that your body gets used to and can’t just be taken off of cold turkey. ARGH. It was hard. Alone, no hubby, dire pain, NICE, but not terribly helpful or comforting nurses, period, blues, and then MIGRAINES. Sum-beach folks, it wasn’t cool I will say. IF I could do it again I would say to heck with what they say and I am staying ON my meds even if I have to crunch them up into powder and sneak them.

So, got the period and the catheter, wow, how nice. They did give me a pad. Which just made it even harder to move anywhere in the bed and find comfort. Catheter was removed and I was told to go to the toilet, which hurt BAD but had to be done. Imagine this though. Trying to wipe and stay clean while reaching over a tummy that is sore sore sore and then trying to put a pad on and pull up the underwear so the pad stays in place all while hooked up to IV’s and in loads of pain. SHEEEEEEEESH.

The answer to the migraines for them? Take me off all narcotics. They decided that it was the morphine causing the migraine, not the fact that I stopped taking the migraine-preventer cold turkey, causing the migraine. I agree narcotics can irritate migraines for me but hello — the cause was the fact that they took me off that med cold turkey. I am not even a brain scientist and I figured that one out. But the nurses decided that I should have zero-little morphine and maybe try tylenol instead. So they bring me these little cups of syrup like you give kids and the nurse said “It’s pure sugar”. OK, my first thought, just had gastric bypass and going to be injesting PURE sugar?? Does dumping happen right away? Because if it does that does not sound like a good idea to me. That’s when something goes right through you, causing pain and diahrrea, and you know  never to eat that again. The thing that they pretty much KNOW causes it is real sugary stuff. Well at that point I was just in pain and needed help so I took it. And 4 hours later I took more. And after that second dose of sugary tylenol syrup I ended up on the toilet. Not only did I have a period but now I had diahrrea too. OH THE JOY OH THE JOY OH THE JOY!!!!!!!!

and again I ask, WHY did THEY not know that was going to happen?

Well my husband got back into town and rushed to the hospital, only to find that they wouldn’t even tell him IF I was there. That’s another story I will tell you about. In the meantime, he found me, and he looked awful. Absolutely awful. At the time I needed him most he looked like he couldn’t hardly do anything other than try to care for himself. He hadn’t eaten, he was stressed, he hadn’t slept, he had a migraine and a fever… here he had gotten sick.  ARGHHHHHHHH. He was with it enough to tell me to get back on my meds and stop listening to all the crap advice I was being given. He offered to get anything I needed and crush it up and sneak it to me or whatever!! First thing…… migraine preventative. It went down fine BTW although I am NOT saying that I recommend anyone try to swallow a pill until you know good and well that you are able. He massaged my back and neck and started pushing the morphine button until I was comfortable and sleeping.  He came back the next day and helped me take a shower (you’d think that was the nurses job but guess not) and helped me get clean and comfortable, brushed through my hair for me which was horribly tangled up because NO ONE had been helping me at all. He didn’t stay long because he was again very sick and had sick kids and my poor mom taking care of them all….   My recommendation there is, if your husband is going to be out of town, reschedule. I didn’t want to wait, but, in hindsight, I should have. I did not know that the nurses and nurse aids don’t take care of you in hospitals anymore, not REALLY, and I didn’t know that the “experts” would be so stupid as to basically know that I would probably be getting a period, migraines, and diahrrea and not help me to prevent it.

My niece came up to see me the first day because I was unable to make any phone calls and everyone was so worried. So she talked to me and then called my mom and my husband and let them know I was okay, and she proceeded to ask for the sign that goes on the door asking visitors to check in with the nurses before coming into your room. This was because I was SO MISERABLE. She then asked the information desk to also call the nurses station rather than just give out my room number to anyone who stops by. Well, what happened was they then TURNED AWAY flowers that were sent to me. Just rejected them. And visitors, and phone calls. They made it appear like I wasn’t even there. Tell me …. where is the logic in that?  My children sent me multiple emails and I didn’t get one of them. They print them out and deliver them but, they rejected them on my behalf. WHAT A BUNCH OF CRAZINESS I TELL YOU. All we wanted was for a nurse to come in and check on me BEFORE people came to visit. That’s all. And, well, whatever……………….

So this is really turning into one big huge bitch-fest isn’t it?? I don’t know folks. While I think I would do the surgery again I can’t say that I would choose the same hospital next time. I honestly don’t think I would. I was not impressed. I liked my surgeon though, and like I said everyone was “nice”…  but it all just turned into a real circus and the main attraction was my pain and misery. I didn’t appreciate it much. I used to be a nurse aide and I will tell you that when I did it I went SOOOOOOOOOOOOO much farther out of my way to assist people and be of comfort to them when they needed it.

I am glad it’s over and I am well on my way to better health and much happiness. I will keep you posted!!

As some of you may know I had surgery on the 19th. It was pretty major and A LOT more painful than I was prepared for so I have been in the post-op ups and downs (up when the pain is under control, down when it’s not and wondering what the heck I have done to myself). Everyday will be better and better and pretty soon I will be back into the swing of life and feeling really great about it all - I am positive about that. So anyway, I am home, in a lot of pain, on some good pain drugs, and my whole family is sick with varieties of the cold and flu.

JOY JOY JOY!

I wish you all a very happy Easter and spring!

There are risks to WLS and I am scared. There was a lot to consider and think about over the last year since I decided to do it. I have had to balance the risks against the benefits. People keep on telling me about “someone they know” or someone their neighbor’s dog’s uncle’s cousin used to know in a previous life…. someone who had complications and died. YEEEEEESH. Let me say this. I did not take this decision lightly. I had to research, take classes, meet with doctors, dieticians, even shrinks!! I know the risks and I am walking into this with no blinders on. The risk of dying is real, however, I have a better chance of winning the lottery. Any surgery is a risk, but people die for many reasons… Obesity without surgery, with all the co-morbidities, is a far greater risk for me. One thing that I don’t think people really understand is that people who are having this type of surgery are at a greater risk of dying regardless of surgery or what kind of surgery. Obesity itself puts you at higher risk of dying from many different diseases/conditions. What I am saying is, there are risks to having this surgery, but there are also risks to NOT having it. Risks including diabetes, heart disease, high blood cholesterol, high blood pressure, bilary calculosis, respiratory insufficiency, nocturnal apnoea, arterial hypertension, arthrosis of backbone and of lower limbs, fertility anomalies, cancer… Obese women are more likely than non-obese women to die from cancer of the gallbladder, breast, uterus, cervix and ovaries. One study found that gastric bypass surgery reduced the total number of co-morbid conditions of participating patients by 96%. Many surgeons recommended bariatric surgery as a treatment option for type 2 diabetes. In some cases, resolution of type 2 diabetes occurred within days of the surgery.

Let’s not forget emotional suffering. That may be one of the most for me. Depression is also linked to being overweight. A meta-analysis stated that several studies found that bariatric surgery patients felt better, spent more time doing recreational and physical activities, benefited from enhanced productivity and economic opportunities, and had more self-confidence than they did prior to surgery.

I lost a friend recently. It has been such a shock that I haven’t even posted about it yet.

I met Helena when I became involved in the world of PCOS advocacy and awareness in 2000. Helena was one of the first women I met. Very friendly, very knowledgeable, very unforgettable. At that time she was dating her long time sweetheart and soulmate. They got married and started trying to conceive immediately, and as with most women with PCOS, they needed some fertility help. They were blessed with triplets…. beautiful children - two girls and a boy. I met Helena and Andrew in person in NY in 2004 and so pleasantly found that I liked her as much in person as I had online all those years. Andrew was such a kick too - a very highly intelligent man who shared all of my political views. Andrew and I went round and round and round about politics. I never has so much fun talking to anyone about it. Helena didn’t agree so it was fun to kind of pick on her. But let me tell you she could handle her own. She was a spunky gal. She smelled so good. That is a memory that will stay with me… her smell. I know that probably sounds strange but I am one who will ask people everywhere what they’re wearing for perfume because I love good smelling people. ANYWAY… I got to meet Madison, Zoe, and Jonathan too. Helena and Andrew had such a lovely family.. and such a great story of how they got their family despite infertility problems.

A year later, Andrew, far far too young to die, had gotten sick and died from a virus. What tragedy! Helena was now a single mom raising triplets. Helena always sent photos of them and kept in touch with emails and blogs about what was going on in their lives. Helena was very supportive when my sister died and she gave me strength, after all, if she can raise 3 kids by herself after losing the love of her life, I should be able to go on after losing my sister. She wrote to me after watching the slideshow I had made, with my own singing, to tell me how beautiful it was, how it made her think of Andrew and made her cry… cleansing tears.

The other day I checked in on a support group after a few weeks only to find that Helena died. Aneurysm in her heart. She had gotten ill, flu-like symptoms (which is also what happened to Andrew). She had pain in her chest and was rushed to the hospital, but it was too late. She had bled out in her chest and passed away 2 days later. Their triplets are just going on 6 years old. My heart is absolutely hurting for them. I can’t even begin to imagine…

There are so many stories that Helena told about raising kids and marriage and life in general. She should have written a book!! One story that sticks out in my mind, and has since the day she told it, was about when Zoe got new braces for her feet. Helena wanted to turn it into a HAPPY event. They got green and purple braces (fashion colors!) with butterflies, and then just the two of them went out to lunch. To make it extra special they went and bought some new shoes to match the braces. What an awesome mom she was.

Helena wrote, “The cashier said how pretty Zoe was and asked her if the new sneakers were for her. I said yes, that they were for her to wear with her brand new braces and that we couldn’t wait to get home to show them to her brother and sister. When the cashier saw the braces, she asked me if the other two at home were “all crippled up”, too. It was a horrible ending to a perfectly nice day. I wanted to scream and cry and punch her in the nose. How can people be so stupid and so ignorant in this day and age?”

I cried…

The last signature Helena had on the emails she sent out read, “Life is short. Break the rules. Forgive quickly. Kiss slowly. Love truly. Laugh uncontrollably, and never regret anything that made you smile.”

I hope and pray that they rise up from tragedy and end up as Nobel Peace Prize winners or something, and, with parents like Andrew and Helena, I BELIEVE that they will.

SPECIAL ALERT - PROJECT PCOS BOARD OF DIRECTORS

A Special Message from the Board

To the Project PCOS Community,
Over the past year, The Project PCOS board of directors have been reviewing and defining the needs of our community. As such, Project PCOS has begun to change our focus and mission to better serve these needs.

As the definition of polycystic ovary syndrome continues to transform, so must Project PCOS. Until this time our focus has been patient advocacy, as women and girls who suffer from PCOS need current information, support, and connections to medical professionals who understand and successfully treat this syndrome. Patient advocacy has been and will remain vital to Project PCOS.

At the same time, while a standard diagnostic criterion for PCOS is available, more and more PCOS patients are finding their medical professionals lack an understanding of the syndrome. The leaders and board members of Project PCOS believe this lack of knowledge has created an urgent need for our focus to be educating the medical professionals who are diagnosing and treating PCOS patients.

Going forward, Project PCOS will be concentrating much of its effort on educating the physicians, reproductive endocrinologists, family doctors, obstetricians, gynecologists, nutritionists, medical professionals, and alternative healers about the syndrome through a series of events, partnerships and educational materials.

Project PCOS will engage PCOS patients in this new mission to help educate and inform medical professionals. With the help of our community, we will get up-to-date information and research into the hands of those working directly with PCOS patients.

Please continue to visit the Project PCOS website, PCOS message boards, PCOS Today Magazine and the many PCOS advocacy and informational sites available for updates about this new focus. Exciting times are ahead as we push PCOS awareness forward! It is only through education and awareness that PCOS will gain the attention it needs to be understood.

Sincerely,

Linda Harvey, CEO and Member, Board of Directors

Branden Simbeck, IT Director and President, Board of Directors

Ashley Tabeling, COO and Treasurer, Board of Directors

Tammy Dolak, Director, Lifestyle Management and Secretary, Board of Directors

Tarra Hartl, Member, Board of Directors

Stephanie Scrites, Member, Board of Directors

Friday night we went out to eat dinner. Well we were sitting and chatting and waiting for our food. People always stare at us. Yes we have SIX kids. That’s SIX. 1, 2, 3, 4, 5, SIX. You counted right. They’re all ours. !!!! So, we are sitting there getting the usual stares. Ya just get used to it. Pretty soon Charleigh (who turns 2 next week) started to wave at an old couple sitting near us. And she waved and waved and waved…. They were laughing and smiling and thrilled and waving back. We got our food, ate, visited, laughed, and started to get ready to leave when this man comes over to our table. He must have been 80 - very elderly. He said, “I wanted to compliment you on your children. You have the most beautiful and well behaved family I have ever seen. It has been a pleasure to watch you.” We said Thank you repeatedly and he said, “You deserve it. You’re doing a good job!” Both Matt and I were probably about ready to cry at that point, it was such a sweet thing of that man to come say. Our kids ARE good though and they ARE fun to hang out with. While we sat there Madison was playing (calmly) with Charleigh, entertaining her, sharing her food and drink with her (Charleigh had her own but, she wanted some of everyone’s). The kids were taking turns reading trivia questions from a book at the table. No one was screaming or crying or trying to run around the restaraunt. It was really a fun evening and it was made even more special by that nice man coming to tell us his thoughts.

THANK YOU nice man… you made my day!!!

Well 18 days and counting to surgery day.. the first day of the rest of my life. I have changed my plans from lapband to bypass. I have not told many people about it but, there are a few reasons. Success rate is higher, especially for women with metabolic disorders (PCOS) or inflammatory conditions (PCOS). It is the “gold standard” in WLS (weight loss surgery), the tried and true method. If lapband doesn’t work then they have to take it out and do bypass anyway, after fighting with insurance all over again. With my co-morbidities I am just better off taking care of it immediately. I hurt so bad, I have high cholesterol, I have headaches, knee problems, hip problems, foot problems… I just need to get ‘er done at this point in time.

Since I knew that I was approved for surgery (about 2 weeks now) I went off of my glucophage and kind of off of my whole “diet” — wasn’t really dieting but watching what I ate and trying to avoid the no-no list. You know, when you can’t hardly lose weight no matter what you do you just think, who cares? Nothing is helping anyway. WRONG. Off glucophage and off of the IAAP plan (which I was not following 100% due to lack of willpower but was following it at least 50%)… I have felt like poopy. My head has hurt everyday. I have GAINED almost 10 pounds. Seriously, this is rediculous. But… oh it’s a long story. Have to switch from XR to regular because after surgery gotta crush or break up meds (can’t do that with XR versions) so I went to regular metformin and….. sheesh. Ended up having a few uh-hem… GI issues. Yikes. So, I went off of it altogether. I won’t comment on all the rest of my failings as of late… at least not right this minute… Let’s just say that the NEW DAY is on it’s way and I cannot wait!!!!! I have a lot of hard work ahead but I am so ready for it.