Friday, August 20, 2010

And I wait

So my laparscopy was going to be in August, then I received a call that the doctor was booked that day, so it was to be September 21. Yesterday I received a call saying I have been bumped to October 5. My daughter will be a year old before I even begin to get some kind of diagnosis on what went wrong when she was born.

I don't think I can make it to October 5.

Tuesday, August 3, 2010

YWG

Being married to a pilot I have learned two things, I have to sleep alone at some point almost every week and my husband no longer speaks English, but rather sounds like an eye chart when he talks. So for those of you who don't know, YWG is the airport code for Winnipeg, Manitoba, Canada.

I was in Winnipeg recently for a teachers course at the Royal Winnipeg Ballet School. I was given a heads up by a friend that your rear end gets sore from sitting, as most of the course is observation. This was true to some extent. On the first day I explained my situation to the Pilates teacher and she was wonderful at modifying the exercises for me. I did not have the nerve however to explain my situation to the head of the school yet though. While in her class that afternoon, I took part in a basic barre routine. BIG mistake! Just a few minutes and my pain was made much worse.
Day 3 of the course found me not at the school but at Emergency in a nearby hospital.
The process was much more quick and pleasant than I had anticipated. They ran a urine test and blood work but basically said there was nothing they could do for me since I would not be in town long enough. So doped up on Atasol 30's with my prescription in hand, I made my way to the drugstore and back to the hotel for the rest of the day.

I had an appointment with my doctor last week. I am on the list for laparoscopy. Hopefully next week! I'm sitting on pins and needles waiting for the phone to ring to tell me my appointment time. She did say that there is still a possibility that they may look inside and see nothing. At which point I replied, "Then admit me to the psych ward! Everyone already thinks I'm crazy, this will confirm it!" However, she was very good to follow up with the idea that if nothing is found, we will try other avenues.
Thanks for not dismissing me, Doc. It means a lot!

Monday, July 5, 2010

The Pill

So, thinking about my monetary situation, or rather, lack thereof, I am trying the pill first. It's been eight days now and so far no luck. I am still in tremendous pain and now I also have bad skin too! If I didn't know any better, I would say I'm ovulating. After nine months, I feel as though my incision is still going to burst open. Is that even possible?
Sigh. When do I get my life back?
A colleague of my husband who is an MD, suggested the only real way to sort the problem is to have a laparoscopy. He also suggested, that for legal reasons, I'm best off having the MRI done in Canada and not the US. He said if I want to go that route, he can get me one within a week in Toronto for less than $1000. Ouch! Now that hurts!

Baby Girl is growing and thriving! She is very mobile and without a doubt will be walking soon! It's so hard to keep up with her. I want to run around with her, take her for walks in her stroller, play around on the floor with her. It just hurts too much. But her smile can always make me feel better. She's like Christmas morning every day!

Thursday, June 3, 2010

Surprise!

Well, I just came from my doctor's appointment. I was armed with websites of information I had found about endometriosis from cesarean, along with the web address of this blog and the address of an MRI clinic in the US.
I really like this doctor and she has a good bedside manner, but it was hard to get the courage to discuss the information with her. Many doctors do not appreciate outside research or people giving them their opinions. Fair enough. I hate when people tell me how to do my job, but in this case I'm not so much telling her how, just look at this info, could this be my problem. Other doctors like when patients educate themselves. I didn't know which way this was going to go. I have taught many doctors over the years and they are the hardest people to teach! They know it all, even if it's not in their field of education!
Just before she entered the room, my insides decided enough was enough! By the time she came into the office to see me, I was writhing in pain and reduced to tears. She did examine me again. Not much to feel though apparantly. She did agree that it could be an endometrial problem and suggested birth control pills as a way to supress ovulation.
Then I got the nerve to show her my info and discuss my thoughts. When I asked if an MRI might be helpful, she said possibly, but it will take some time to get an appointment. When I followed up with the fact that I was ready, willing and able to travel south of the border and pay for it out of my own pocket, she seemed quite surprised! Yes Ma'am, I am willing to do this because the pain you see me in now has been my life for the past 8 months! So she did take my sheet of websites, blog address and MRI clinic info. (Hi Doc if you're reading this!) then said she would see how long it would be to get me an MRI here and would go from there. I have the birth control pills now. Going to wait until I hear back before I take them.

The thing I have learned during this entire ordeal, is that you have to be your own advocate in your healthcare. I have great doctors, but they have so many patients, I am just a blip on their radar. They don't have the time to do the research. I heard her secretary say to a patient today, that the doctor was triple booked all next week! That's crazy! We really need more doctors and nurses in this province, but that's a whole different conversation again! Plus, I'm not in the mood to talk about "our Danny" anymore either! He gets too much press as it is!

So now I wait.......

Wednesday, June 2, 2010

On pins and needles

My next appointment with my doctor is tomorrow morning. I have my literature ready to present to her. I really think I may be dealing with endometriosis from the surgery. From my research, it is more common than thought, but often only diagnosed in 1 - 5 patients out of 1000! No wonder my doctor said she was baffled and has never seen a case like mine before. She is a young doctor and not every birth is cesarean, so she probably hasn't seen this before. Apparantly, she's not the only one.
I have read the stories of other women going through exactly the same thing as me. Same symptoms, same negative test results, and same opinions from doctors. Many aren't diagnosed until many years later. I really hope I'm not years sorting this out. I will lose my mind! I am going to ask her for a requisition for an MRI as well. Perhaps that will show something. I will have to shell out the money and get it done in the US though. (If it's good enough for "our Danny" it's good enough for me!)
I wonder if he will let me stay in his Florida condo?

Wednesday, May 19, 2010

Symptoms, symptoms and more symptoms!

So, you may be wondering what exactly is it that's bothering me so much. Good question! Here is a list of my daily life.

~PAIN! On a scale from 1 to 10, I'm usually hovering at the 8 or 9 mark. Some days, (especially during ovulation and my period) I'm a 15 and literally cannot stand, sit or walk.
~Burning and tearing sensation on the inside of my incision.
~Strong, abdominal contractions that I have no control over.
~Hot flashes. Extreme sweating in my chest area. I can literally cup my hands below my breastbone and the sweat will pool there.
~Thirst. Perhaps from all the loss of water through sweating?
~Pain when voiding my bladder or bowels. A deep pain in the groin area.
~Swelling of my abdomen. I look very pregnant!
~Nausea.
~Tender stomach. To the point I sometimes cannot even have clothes on, it hurts so much.
~Lack of mobility. Use of my abdominal muscles is painful. Do you have any idea how much you use your abs for without even realizing it? It's crazy!
~Impact on relationships. With my husband (will we even be able to have another child?) and daughter (I just want to roll on the floor and play with her and take her for walks in her stroller).
~Depressed mood. All this pain and not being able to live a normal life will get you down after awhile. Especially when doctors make you feel it's all in your head. You begin to think you're going crazy. (If it's all in my head, how do I imagine swelling?)

Making a profile of all these symptoms has lead me to believe in a couple of possibilities.
Adhesions from the surgery and/or endometriosis from the surgery.

I will tackle these one at a time later. Right now, it's time to deal with my pain. Somehow.

I can't tell you anything different...

So my day finally arrived! My office appointment with the doctor who performed my operation. I really like this doctor. She happened to be covering my doctor's patients in her absence. The nurses said she was a triple threat! A good doctor, very good person and beautiful too! I was only interested in the first of the three, really, but it is easier when your doctor is a nice person. (I'm all about the bedside manner!)
So I see her and dissolve into tears quite quickly. She is still perplexed as to why I am still having pain. She says she has never seen this before, and can't really say anything that the other doctors haven't already said. My worst fear came out of her mouth, "I'm afraid I don't have any answers for you either." I then realized how much of a pedestal I had placed this woman on. Why did I think I could just go to her office and she would magically cure me? After all, she did examine and treat me in the hospital and had no answers then either. Why did I think that would change just because I called her office and got an appointment? However, she does examine me (something I had to beg other doctors to do) and suggests several options to rule out. Could it be gastrointestinal? Perhaps see a pain specialist.
Over the course of the next three months I began to eliminate other possibilities.

It's not gastro. I was treated for irritable bowel syndrome and had a barium enema. (THAT was tons of fun!)
Not an infection. I went through yet another round of antibiotics.
I am now on my third medication for nerve pain. Which she said could take up to three months to notice any difference. It's been that long now, and nothing.

My doctor's plan was to rule everything else out before having to go inside via any kind of incision. I agree with that. Since the first one has been so difficult to get over, more would probably make it worse.

At the end of all this discussion, she agreed to see me again in six months.

I will be seeing her again the beginning of June. After only three months.

Tuesday, May 18, 2010

Mom, can you stay please?

So, apparantly, I'm fine. It hasn't been six weeks since my operation and the tests all came back negative so what's the problem? The problem is it hurts to move, breathe, void my bladder and bowel, eat, feed my baby, pretty much live!
My husband is a pilot so he is often away from home. This isn't the ideal situation, but I am just thankful that he is in a safe job, I can speak with him every day and he's home at some point every week. I couldn't cope with this situation if I was a military wife with my husband in an unknown land for months at a time in such a dangerous situation. These families are courageous in more ways than one.
Fortunately for us, my parents and my husband's parents live close by. Both my mother and mother-in-law are retired nurses. While hubby was at work they would do "shifts" babysitting both me and the baby. Mom usually stayed overnight so that if I couldn't get out of bed to see to the baby, she would. Many a time it would be both of us up with Baby Girl. I must say, it was a very special bonding time for all three of us.
We don't have many sleepovers anymore, but I still get tremendous help from both of my moms.
During a "shift change" one morning, I couldn't handle it anymore. It had been two months since my operation and I wasn't seeing any improvement. With both mom and mom-in-law with me, they convinced me to call the office of the doctor who performed my surgery.
NOTE: I live in Canada, so we do have universal health care (thank the Lord and Tommy Douglas) but that means often times wait lists. You often need a referral to see any type of specialist, including obstetricians. So cold calling a doctor's office seemed as difficult as flying to Mars.
However, I calmly explained my situation to the secretary and that this doctor had performed my section and seen me in hospital. Voila! An appointment in two weeks time! Yay! There was hope on the horizon!

I didn't make it to six weeks

Ah, the six week benchmark. "You will be back to your normal self by six weeks" "No heavy lifting for six weeks, even if you're feeling fine. After that, you're good to go." Words of wisdom from doctors, nurses, other patients and every know it all around.
I didn't make it that far. By three weeks post-op, I was still in agony. During my second trip to the emergency department I was happy to see that the doctor who performed my surgery was on duty that day. She admitted me. I figured I would just be in overnight since it was late and they wanted to do some tests.
Seven days, two ultrasounds, a CT scan, two courses of antibiotics, and far too many drugs placed in every crevice of my body later, I was discharged while still in terrible pain and still no answers.
I was happy to be home. I missed my family. If I was going to be miserable in pain, I would rather be in my own bed! So what's the problem?
While in hospital, my OB/GYN who followed me through my pregnancy (not the surgeon) thought it would be good to get a pair of fresh eyes on this. Perhaps another doctor may see something she missed. Sound reasoning. I agreed.
Our local hospital is a teaching hospital for the medical school at the university. Meaning, a resident doctor examines you first, then the MD. A few times when I had to see someone for women's health, I always asked if the resident was male or female. If it was a man, I declined the resident and just saw my female doctor. My main reason for this was because there were several of my male friends from high school in med school at the time. Knowing my luck, one of them would walk in while I was laying down, feet in stirrups! Awkward! Not the best way to reunite with old pals!
However, now I was in so much pain, I didn't care who examined me. I had a male resident and a male doctor see me. Now my thoughts are "No ovaries, no opinion!"
It was clear that this man thought I was making all of this up and wasting his precious time and a hospital bed. I was discharged the next day. What do I do now?

Just to clarify

My intention in writing this blog is not to oppose Cesarean section births. For myself, it did seem to be the only option. It was not an elective surgery. I understand that many women recover well after the normal six week period. Some take longer, others not as long. However, my case seems to be quite different from the norm.
The many doctor's I have seen are either genuinely perplexed by my situation or thinking it is all in my head and I just take longer to heal, can't tolerate pain, etc.
I am just searching for answers as to why I am having so much trouble almost eight months post operation. Finding other similar stories or information has been difficult. This is my story which is shared because perhaps it is your story too. There is safety in numbers.

Monday, May 17, 2010

Staples are for paper

Aren't they? The thought of having staples in my skin still gives me the hee-bee-gee-bee's! The week after my surgery whenever I washed, I had to get my husband to wash my incision. I could not even look at it.
The nurse came to our house to remove the staples. This was the day I had been waiting for! I just knew once those awful pieces were out of me I would feel that much better!
It was not to be. She put some sterile strips across the incision and told me they would come off in 5 days or so. They did. I still wasn't feeling any better.
Breastfeeding was still a struggle so I kept up with pumping my milk as I had done in the hospital. Like any new mother, I was bewildered and exhausted! I just couldn't get over the amount of terrible pain I was having. I knew recovery from a section would be a much longer process, but I didn't realize what was in store. They say that you are usually back to yourself after six weeks though. The countdown was on!

Hit by a Mack truck

Apparantly, that's how you're supposed to feel after a cesarean. My nurse broke it down like this,
Week 1: You feel like you've been hit by a Mack truck.
Week 2: Truck turns into a bus.
Week 3: Bus becomes a pick-up truck.
Week 4: Pick-up becomes a compact car.
Week 5: Car becomes a motorcycle.
Week 6: Motorcycle becomes a guy on a bicycle.

Day 1: Drugs are good! Feeling very little pain and when I do, they give me more! In and out of sleep. Baby girl is in the nursery and because of the catheter, I don't even have to get up to pee!
Drugs are bad! Why am I here? I had a baby? Where is she? She's crying and I can't get to her! Damn catheter. How am I supposed to breastfeed like this?

Day 2: Not only did that Mack truck hit me, I think he backed up and ran over me a second time! Gotta pee....much more difficult now without the catheter. Why are these people coming to visit me now? PAIN! If I didn't have my baby in my arms, I would swear she was still in my belly! Something was moving and kicking in there! Gas?! Walk it off?! You're nuts!! I can't move!

Day 3: So here I am walking the halls and drinking hot water, whatever they tell me to do to get rid of the gas from surgery. My kingdom for a fart!

Baby girl won't take the breast. She either screams or falls asleep. Meanwhile the pediatrician is giving me heat because the baby is being supplemented with formula while I'm waiting for my milk to come in. What am I supposed to do? Let the child starve right after birth? I'm tired of all these breastfeeding "experts". Especially the little nurses fresh out of school who have never had a baby! More people have squeezed my breasts in the past 72 hours than I can count. According to pediatrician, I'm already a bad mother. Great! When does baby girl publish her tell-all book "Mommy Fed Me Formula"? My hormones and sanity can't take it any longer. Fight or flight senses kick in and I yell at everyone in a hospital uniform to get out of my room! I think this crowned a new nickname for me at the nurses station. Who cares!

Meanwhile, it finally happens! Just after midnight I pass the gas through my back passage! So happy I want to call everyone I know and wake them up to share the good news!

Day 4: The OB/GYN that performed my surgery pays me a visit, says I can go home! YAY!!! You never saw a post-op patient pack so fast!

We bring baby home, hurting and exhausted. She won't settle at all. Won't take the breast, spits up what she gets from the bottle and just screams.
Finally at 6 AM, she's asleep! I think we may get an hour! Insert Murphy's Law here: The fire alarm starts yelling "CARBON MONOXIDE" You've GOT to be kidding me!
By 6:30 AM the fire department is going through our house and gives us the all clear. Oy vey!

PAIN! I will feel better next week once my staples come out. Right?

Let's start at the beginning...

It was Barack Obama's inauguration day, January 20, 2009 when I learned through a home test that I was pregnant. It was exciting and scary all at once! We had dreamed of this, but I was still a fan of the "ignorance is bliss" theory about pregnancy, labor and delivery.
My pregnancy was pretty textbook, except for the awful migraine headaches that plagued me from month 3 until the end. I do suffer from migraines, but normally one or two a year and due to stress. Therefore, I was not prepared for the four or more headaches a week I was suffering! But I got through.
Many times during my hormonal episodes, my husband would find me crying in the shower. "I can't do this!" "I can't push this baby outta there!" "I'm scared!". But he re-assured me and when that didn't work, just told me flat out "You don't have a choice!" Ah, reality!
As much as labor and delivery scared the hell outta me, it seemed a much better option than surgery.
I have learned not to guess or say anything out loud anymore. I had three things I kept repeating during my pregnancy:
~I'm going to go early
~I just don't want surgery
~I'm convinced it's a boy
On September 30, 2010, at 41 weeks, I was called to the hospital to be induced
Let the games begin! I was calmly getting ready to go and said to my husband, "When we return home, we will be three." Reality was rearing it's head again.
So, they used the cream on me. It didn't work the first time, so after round two the contractions began. Not as bad as I had feared! I could do this! Just don't think further ahead. My mother had told me to take one contraction at a time, then when it's over, you never see that one again, it's gone. That started out fine, until my contractions were coming fast and furious without any pattern. Four and a half minutes each with maybe ten seconds in between! Even hubby was tired, as he was massaging my back through each one.
Many hours, a change in date (it was now October 1) and an epidural later, the doctor, not my regular OB/GYN, asked if my doctor had explained to me about dialation in women who have had cryotherapy in the past. No she hadn't. When I went to my doctor appointments she simply took my weight and measurements and listened to the heartbeat. That was all. So because I had cryotherapy about 10 years previous, the scar tissue around your cervix stops it from stretching normally. Therefore, you can dialate, but instead of gradually getting to 10 cms, you may go from 2 to 10 instantly when the scar tissue lets go. Oh, joy! So, we waited.
And waited. And waited.
After 18 hours of very hard labor and not progressing past 3 cms, it was time for the operating room. I was having major back pain and shakes from the epidural. To prep for surgery usually takes 15 minutes, it took over 30 with me. Hubby was very worried and scared (I learned later).
Remember my three things I said earlier, well I had surgery, I was a week late and the nurse introduced me to my beautiful baby girl!
And so it begins........