Pages

Tuesday, November 28, 2017

The Specialist

This post is raw and yes I use a few choice "raw" words, just a heads up.

 I️ can’t decide how to feel 

On one hand I️ have so many questions answered now On the other it’s opened the door to a whole new world of worry. 
Exactly how long waiting is going for be worth it? 
How the hell can it cost more than my husbands 4 years of grad school living allowance for one surgery? 
I️ never want to be pregnant again. 
I’ll be able to walk and not pee. And run and have fun
I’ll be able to orgasm again. 
I’ll be able to empty my bladder. 
I️ will be out of commission for weeks. 
I️ will be better off for longer. 

I️ have a torn pelvic floor. I️ have 3 misplaced organs. I️ have been led to believe the things I️ am experiencing are just what happens to women’s bodies. 

And in the words of my doctor “that’s bullshit. This IS a big deal!”
 I️ am 29 years old. 
I️ can not stand up without my bladder leaking. Let alone, pick up my toddler, lift heavy groceries, exercise, cough. 
All the kegels in the world will NOT help my condition. They will not hurt to strengthen my muscles. But the parts that are torn? Will not get stronger or function properly withOUT surgery. 
To prevent recurrence I️ can not keep my uterus. This is something I’ve known from the beginning, but I️ kept hoping I️ was just being overly anxious. I can’t help but wonder if it’s taken so long to get straight answers because I️ needed to come to terms with that. 
I️ also wonder if I’d gotten the help I’ve sought sooner maybe it wouldn’t be so bad? 
Questions I won’t be getting answers to. 
That’s ok. 
What I️ know now is how far gone some parts of me are. I️ can not empty my bladder on my own. I️ can not keep my uterus inside of my body. I️ can not strengthen my muscles on my own. 
The recovery for this surgery will be intense. I️ will be unable to lift more than 5lbs for 6 weeks. Then 10 for 5 more weeks. From there I️ may slowly increase my actions. 
This has not been what I️ found prior to this point. The info I’ve found previously is for mild to moderate cases. Not Stage 3 cystocele, Stage 3 rectocele and Stage 2 uterine prolapse.  I’ve seen with my own eyes what has happened to my body. However I have found a specialist who can help me. 
I️ just can’t afford him. By about $100k   

I️ do not think I️ was led down this path in vain. I️ mean the odds of going from one specialist to a secondary specialist and getting in to see them on short notice... is amazing.
My visits with these two doctors were very long, about 2 hour + appointments. They were both as thorough as they could be. The first appointment in Great Falls I was feeling hopeful, after all I'd waited a few months to get in and my doctor even called them to help me get my appointment while I was in his office. I'd researched the clinic online to see that they offered hystero plexy surgery (procedure that strengthens the \attachments holding up the uterus). I had called the Office billing department and got a general cost idea of what the procedure would cost me as a cash patient. And it was affordable. However I had merely self diagnosed that this was the particular procedure that I needed.
What could I do? I had read about it in multiple books, and online articles and a few studies of "younger women" who've experienced similar issues (granted these "younger women" were still older than me by 20 years). The procedure was stated to have great success. It however did not mention anything about the other issues I was facing. Which I neglected to take into account, but I'm not the doctor and that's why I still sought specialty care.
Anyhow at this appointment i got my exam, and she brought in "the pessary cart" there are many different styles and sizes, and she wanted me to try a few before giving up on the idea. Every single one i tried fell out. Yes I did cry with frustration and feelings of doubt and discouragement; Which left her very confused. She further examined and stated "Well this is unusual indeed"
Great just what everyone wants to hear about their lady bits...

"It seems you have unusually stretchy tissue. I can not see anyway to help without surgery"
Well I'm glad we came to the same conclusion I entered this office with...

She went on to explain that I would need more than just the hysteroplexy and that a Urogynocological specialist visit was in order. She gave me the info for one in Billings in case I was going through there during my trip (which I'd planned to but over a weekend on my way home) 
Distraught I left. I messaged my mom on the chance that she knew somebody.
She did.
By the time I had his contact info the office was closed, so we went on with our vacation in Utah and seeing so many long lost good friends as we could in approximately 36 hours of daytime. Monday morning I called the Specialist my mom had recommended.

Turns out another friend of mine knew this particular doctor also as she had worked as a prep/recovery nurse for him! All had great reviews of his skills and knowledge.
Being such a great recommendation I felt that surely I wont get in to see him while I am in town during a holiday with only 3 business days to fit in. They had an appointment the very next day that was open.
Joy.

I took it. It wasn't cheap but I took it.
This time I brought my husband with me, I needed the support. It was long, had lots and lots of waiting for him. However it was an eye opening experience for both of us. He took measurements of just how far my organs have slipped, I wont get too in depth but of the 4 main organs in the pelvis, bladder, vagina, uterus, rectum none of them are basically where they should be. Not because I pushed to hard birthing babies necessarily, not because I got back to activity too soon and not because my kegel strength isnt 5/5. These organs have fallen because my muscles have torn and parts of them simply do not function as they've been disconnected. Which means surgery.

There's more than one option when it comes to surgery, but to get the best results to keep from having to go through this all over again in just 5 years, the more invasive one is recommended. Which has longer recovery time, more intense recovery and takes longer to preform. Which skyrockets the cost. 
So I can't really do that at this point.I get to keep waiting.
I should be better at waiting by now since It's what I do all the time :) Waiting for checks to be mailed, waiting for weather to let up, waiting for tantrums to end, waiting for daddy to get home ;)
all sorts of waiting games.This wait just feels heavy.
I am to avoid intense exercise, which I enjoy so that will be difficult, I can stick to walking, biking or yoga. So I have some options at least. No more weight training, Cardio Kickboxing, Running, Elliptical etc etc for a while. Which made me cry. Exercise has helped me overcome my post partum depression. Having to let go of so many types of it feels like opening the window to let that cloud back into my life. I will try to keep it away. Work on my nutrition and overall functions that I can.
i am also meeting with my physician here in Canada; to see if this new and official diagnosis can help expedite the wait for a specialist visit here. Lets face it I'd be able to afford more of the care while here with the socialized medicine system. It's a great system, just known for its wait times.

I don't have cancer. I am not dying. Just peeing an awful lot, and bleeding when I shouldn't and having to work really hard to pay attention to what Im eating to maintain better gut health (something that should be done always anyhow). I got home from this trip with so much on my mind, intense pain from being on my period, and then I started throwing up. Both ends.
Today I am feeling way better, whether it was a virus or I just made myself sick agonizing over all the what if's in my life right now. 

I have some amazing friends and family who have offered their support and help, and I am so grateful. I just don't always know what I need help with. I do need help learning to say No. Lets face it I've always had that issue! For now i will be working on training my toddler to not need me to pick him up all of the time, getting down to his level to offer comfort, making him walk up the stairs on his own, basically redoing out bedtime routine and trying to transition him to either his own room or sharing with one of his sisters.
Trying to focus on the things that I CAN DO. The things that are in my control, because lets face it that is mostly just our own actions and reactions. My husband has been working tirelessly to find solutions, he's applied for second jobs and put feelers out for opportunities he can do from home or during down time at the office to help us save up for these expenses. It is also expensive that I wont be able to massage. Maybe some light work here and there but full body hours are out. I might find myself a part time job around town to help our family, and maybe having jaxon have some time away from me regularly will help him see he is doing great and doesn't need me to hold his hand every moment now. Or maybe it wont.
I do know I will be approaching this holiday season with more and more prayer and focus. A time for centering my life and that of my families on the Grace of God and the tender mercies that so often get overlooked everyday.

This is all I can do right now. I'll probably be working on some quilts too though, cuz those are good for my mind, and I can't be as exercising  as I'd like so I gotta get creating!
(making up words is fun isnt it?)


If you made it all the way to the end wow, thanks friend for walking down this path with me. I'm glad you're here, not sorry things got so personal; lets face it we're friends forever now. 

Thursday, November 9, 2017

P.O.P. Pt2

     If the last post was TMI for you then don't bother with this one. 'Cuz things don't progress with out help; Just when it seemed like it wasn't getting worse it was staying the same, it changed.There is good news in sight though.


Here we go....


 Last post I left off with the fact that I am still waiting. Which is true. Last week was rather difficult in the fact that I haven't had to take pain meds for over a month and last week I just couldn't make it without. I hate taking them.  They make me sleepy at first and then when they wear off I feel itchy/tingly, they also cause constipation. Which is terrible in my current state.

Some of you may know my mom had Colon Cancer at 34. Because she was so young all of her children have been encouraged to get early scans to be preventative. I got my first scan last year, I had 10 polyps at the age of 28. They removed them all and none of the biopsies showed anything negative, it just meant I was to return in one year for another scope. I was also referred to a geneticist for some genetic testing to rule out some other possibilities (the results of which I should be hearing back about in the next 4-6 months now; remember all the waiting...). In the meantime I am on the books for annual scans until they don't find anything, as well as watching my diet making sure I get plenty of dark greens, fibrous foods and stay hydrated. Now I am not perfect at these things by any means, but I have been improving a lot. At this years scope I only had 2 polyps, and will meet with the doc again in 6 months to basically schedule next falls scan. Reigning Youngest in the scope line title will continue to be mine for a few years yet. 
How is that related?

It means I'm more easily constipated than some. So taking the pain pills it's very easy to lose regularity which I've been working to gain for the last couple years. This increases the pain levels I have, as there is more causing pressure. The lowest I have ever been was last week, I literally had to move my uterus out of the way in order to have a bowel movement. 
Little degrading.
Come on this doesn't happen in real life does it!? Isn't that a stories from the ER sort of issue?
Ya'll that's the lowest I've been since beginning my fight back against the PPD cloud that came into my life 2 years ago.
I can't live like this anymore.

I went to the doctor a few days later, as soon as I could get in basically. It is not in my nature to be a squeaky wheel, but this occasion calls for it. I went in, I had someone watch my kids so I could focus, and my husband even came with me.
The Doctor walks into the room, and all he said was "so How can I help you today?"
cue the tears.

This is why it was good Jesse was there with me, to help make sense of the words I was trying to get out. He is my backup. Always.
Explained everything recent, and is there ANYTHING we can do?! We are willing to pay out of pocket to get help.
While we were there he called an office in Great Falls, Montana with us in the room. He was asking if they had received the referral he had sent 2 weeks prior, apparently it got lost. They gave him the specific fax for the doc I need to meet with, his assistant even called to make sure the fax was received.
The next day I got a call from them.

Cue the Joy

I have an appointment to meet with the doctor who does these repair surgeries regularly. I have an appointment that I only have to wait 1 WEEK for! Next Thursday we will be meeting with him in Great Falls, sorting what needs sorting, and scheduling what need scheduling.

The adversary is so scarily real.

Today I received the most exciting phone call. After two years of waiting there is finally a light at the end of the tunnel I have been stuck in. I have an appointment to meet with a surgeon next Thursday. A surgeon willing to take me in as a cash patient.
The price quotes I got from his billing department were much more reasonable than I had anticipated.
But now that there’s finally an end in sight. An end of the pain and embarrassment, and end to the complicated menses, an end to peeing when I walk too fast or run or jump or laugh or cry or sneeze or cough. And an end to needing to physically move my uterus out of the way so that I can have a bowel movement.
And all I can see are the giant dollar signs all around me. How much it’s going to cost as a procedure, the exchange rate, in time I can’t solely take care of my family, and how long I’ll be unable to work. How much it’s going to cost, and all the other things; The car needs winter tires, the van door is broken, there are literally cabinet doors falling off dressers and cupboard like it’s an epidemic! I have prayed and fasted to know if this surgery was the right course of action. If it will really help, if it’s worth the attempt. And I know it will be. But for some reason all I can see are blasted dollar signs.
Christmas is coming
The Us exchange rate is not in our favor.
My family can’t really travel here to help me
My husband has a clinic here he works at, as well as one in Arizona that he needs to regularly visit and pay money towards expenses until it’s more stable in bringing in its own income.
I know this is the answer.

 I know it. 
So is that why all I can see are the reasons to wait?


Shut up Anxiety; cuz you are a liar.


There is still a lot of questions I have, and I will hopefully get some answers next week, as long as I write them down so they don't fly right out of my mind when I walk into the office! I am not in the clear yet, but the light at the end of the tunnel is glowing brighter, which means it is getting closer.
I know I have a great support around me, I have Fox family nearby that I've grown so close to since moving here. I have more friends here no than I often realize. I am not alone. There are people willing to help me get through this. Whatever "this" ends up being. 

Just gotta have Faith.

Saturday, October 28, 2017

Pelvic Organ Prolapse Pt.1

Hey friends, remember me? I used to blog...then I had a little boy and I haven't so much as thought of my own blog since my last post with his birth story. Lots of things happen in two years. I struggled greatly to breastfeed my son. So greatly in fact that after infections and literally regrowing my nipples I no longer have feeling in many of those areas. Nerve damage. You see that is a whole different post, and I will write that at another time. This is a very personal post. Nitty gritty things my friends, if you don't want to hear about it, you've been warned and can visit the blog another time for cute family photos or yummy foods I love so much I share. This is all from my personal journey, do not use it to diagnose yourself, or others, if any of it sounds like something you could be affected by approach your doctor about it, its a real thing.

Thats not the only physical battle Ive ben fighting since the birth of my son. He was born at home, and very swiftly, so swiftly that it was compared to bungee jumping into the world. The difference with actual bungee jumping and his birth jumping is that umbilical cords are a lot different than bungees. As you can probably imagine.
You see while he was making his expeditious entrance into the world his "bungee" was still firmly attached to my internal organ. At the time, we didn't think much of it, i had an extra long cord wrapped extra tightly around my little boy. Once he was breathing I did not think of it again, until 5 months later.
September 2015
Oh goody my period returned...one of the many bummers to stopping breastfeeding so early. Anyway I tried to go about things as I normally did prior to having a baby. It just went horribly wrong. I placed a tampon and went about my morning, until I could feel the warmth going down my leg. The one so many women are familiar with, you know the one we don't talk about unless someone asks to hear an embarrassing story and we are VERY good friends already with this person... That dripping.
"It has only been like 20 minutes this cant be happening..." sure enough my under clothes were in ruins, and my leggings did a great job absorbing... upon removing the tampon it was completely untouched by the blood, except for the bottom portion. WTF?! I also had a 3 year old at home, and a 5 month old, so as bothered by all of this as I was I couldn't take much time to think about it and just figured I must be really out of practice at this, put on a pad and new clothing and went about my morning.
By nap/quiet time I had a few minutes to myself and figured I'd try my diva cup, its easier to deal with. I couldn't get it in the right place. I felt so beyond ridiculous! "whats wrong with me?!" was all I could think, then I tried again;  only I felt why it wasn't working. Something was in the way.
Now I mentioned before this is a very personal post, but Im not sharing personal photos or anything, I do plan to show some textbook type photos however because my descriptions with words are limited.
what do you do when something is wrong down there? grab that hand mirror...boy was that freaking weird. SO I did the next thing a girl would do, I called my mom. For those that do not know at this time my mother was also not in the best place, she was recovering from a surgery that went awry and was attached to a woundvac that was keeping her stomach organs from falling out as her body tried to heal itself. as it turned out she couldn't talk as she was doing her IV meds for the day. So I googled and planned to call back.
As anyone who has googled symptoms knows, it can be terrifying. pretty much convince yourself of imminent death or cancer in a matter of minutes. Once I at least knew the better words for "I think my uterus is falling out" I called my midwife.
By this point I had been technically released from her care, but lets face it, when you help someone catch a baby in the tight space of a half bathroom, then stitch up their broken lady parts, and help them find a new normal as they try to keep a new human alive, you're pretty much friends for life. She helped me calm down. Eased my fears that this could be helped and gave me a phone number to a clinic with a physiotherapist that deals with pelvic floor issues.
I went about my day. There's something that can be done; this is NOT the end of me!
I called my doctors office for an appointment which I went to. I sat in that room wondering how I could put this story into words...Hey good talks on Sunday at church right..how are you kids? so anyway I think one of my organs is falling out of my body but its probably no big deal, right? I should just get going... is basically how it was about to go down. Besides I had 3 kids in the room with me! Somehow I found the words. (Praise the Lord; whom I know placed them there)
I remember the look of hidden shock. This isn't something that happens to 27 year old women. But here I was a kindergartner, a toddler and infant in tow asking how in the world this happened and what do i do now. I got a referral to a Gynecology office in lethbridge and I would just need to wait until I could see them.
November                           
December
January
February 2016
I got in! I saw a doctor, who examined me and knew what to look for. Guess what I left with? a prescription for antidepressants and the same phone number from my midwife.
So I'm a little crazy and just need to do more kegels. Some women just deal with it until they get issues with the cervix getting scabs or scrapes from activities at which point they try a device called a pessary. They can push the uterus right back into place between puts on the golf course, I'll be fine.
Not the words she said but that is how I felt. Yes I also suffer from post partum depression, it was a traumatic birthing experience. I have never felt so badace as when I had a frickin baby in my house! But my mom was in a coma, my baby was bruised purple mess for the first few weeks and breastfeeding HAH. I needed the help. I was a textbook case of take these for a little while and then you wont need them anymore, "you just need help getting back to your normal balance"
So I dealt with the depression, I fought and I fought and sometimes I still have to fight it (that's right I'm not out of the woods with it yet but I am so much better than I was). I saw a counselor and I did what I could to improve my state of mind, to better care for my children, myself and all those other lovely folks I love.
54
Fast forward to the next fall.
By this time I was feeling severe pain, I was able to get an MRI and that didn't really help much. I went to see an acupuncturist. I went once a week for 90 minute sessions for 7 weeks straight. And somehow I was able to afford it. In December of 2017 is when I finally saw the physiotherapist. She tried to be optimistic, but she also told me that I shouldn't expect to see any improvement in the first 6 months at least. I wanted her to be wrong. I wanted it so badly. I did my exercises, I did the research she suggested I read several books about the health of the pelvic floor proper sitting, movement and breathing techniques. To no avail.
By the next February things were worse. At this point, even doing everything they told me to, I didn't lift heavy things, I did my exercises I was body aware when I moved the slightest.
That's when I saw my cervix outside my body for the first time without the assistance of a mirror. Yep. I looked down and there it was. The organ of my body that is what makes me most female, the organ that grew and nurtured 3 beautiful healthy babies. That same organ was hanging halfway out my body.
 To say i was shocked would be an understatement. I was beyond. I happened to be visiting my family in Colorado; Meeting my new nephews. I waited until I got my kids to bed, then approached my mom. I felt as if I was 13 again starting my period for the first time. Humbled, I in fact did NOT have any answers myself. My mom is wonderful and gave me some ideas and things to say to my physicians to get more help. I needed more help. When I got home I met with my doc. He found a loophole and got me into see a gynecologist in Levern just the next week! When I met with her and explained all I have done, all the specialists I've seeked, the books and articles I've read; she told me what I didn't realize I needed to hear.
"This is not something we generally see in women under 50, or those who haven't entered menopause. I am going to help you find answers."
I needed to feel that someone believed me, that it wasn't all in my head. Because it is NOT in my head, in fact its only half in my pelvis and that is the problem! Upon further examination she made some other suggestions but ended  with "I know surgery is the last thing you want to do, and I encourage you to try everything you can, but based on what I see and feel, it's inevitably going to be in your future at some point"
okay.
I can deal with that.
Here is what she found
Prolapse Image
I have Enterocele. Yep everything involved, this is why Dr. A said surgery will be in my future. I have come to terms with this now. It took a while, I prayed a whole lot, asked for insight and in research have found the confirmation I sought. The pain I am experiencing comes from compression on the nerves by these falling organs. That is the running theory anyway. Thats why sometimes its worse than other times.

There is a lot of waiting in socialized health care.
My info has been sent to the Pelvic Floor clinic in Calgary, and I should expect to hear from them in 9-12 months.
That's what they said when I called anyway.
Meanwhile I still try to stay active and keep up with my ever growing 2 year old boy (he is 35lbs now! And still wants to hold me always). I can not always do this. I teach a kickbox cardio class a few times a month to a great group of ladies that stay active together and our kiddos play. It has been great. There have been a few instances where I have last minute had to cancel; because sometimes I just can't do more than is absolutely necessary. I can't run anymore, I can't really jump anymore. There are many things I miss, but I know that this is not permanent. I now know there are possibilities ahead that I will be able to improve my current state. I will not always hurt, I will not always feel like something is sitting where it shouldn't, I wont always pee if I try to run, jump, play with my kids!
There is just lots of waiting right now.