Unsteady

I haven't posted in awhile, actually I don't think I have posted since I went back to New York. I will say I am extremely grateful for the surgical team that took care of me and will take care of me when I return. There is a lot going on and I know most know that I am typically an open book but right now I am going through yet another health bump in the road. Basically we are looking at it as precautionary but I haven't met with the other doctor. I am kind of avoiding it because I want my life back. With everything going on I actually have one hell of a poker face. I started physical therapy and it's pretty tough but I love pushing myself. They say do 20 I do 30. I was always pretty good at pushing myself physically, there was a time where I was actually quite the rockstar in the gym. That was also 10 years ago.

I am slowly getting back into a routine, which is me rushing home after work and throwing myself into bed at 1. I barely can keep my eyes open on the ride home. Clearly I don't do well with surgery recovery, which basically means I am getting old. Pain wise, I am still in some pain, mostly back and sharp pains but I tend to tough it out with some ice cream.

So who knows whats next for me on this journey. I am not ready for more doctors, honestly I may just wait until I go back to NY in 6 months for rescans. I haven't died yet and I'm pretty sure I won't die anytime soon, so anyone that's on my will, sorry...

slob and max

its been a rough 24 hours. Nausea still continues and I’m very uncomfortable. Tonight as I’m laying in bed I look and see slob in his spot on the bed and max no where to be seen. I walked into the living room and there he was all alone. It made me think of when I first moved out and wanted a cat, I had a list in my hand of all these cats and stumbled upon slob. He was tucked back into the cage but as soon as i stuck my hand to the bars he walked up and sniffed my hand. The list went in the trash because I saw him and I just couldn’t believe that someone could give a cat up like that. His one page file basically made it like they abandoned him. I took him home and didn’t realize that he was fully infested with fleas and ear mites. He had to be dipped twice. He’s been battling since I’ve gotten him. A few years after and yet another move and he had issues with his ears and teeth. Now thank god he’s okay just has the funniest ears but he’s been with me for all my surgeries. Like my first one when my boyfriend at the time was supposed to stay overnight to make sure I was okay (doctors orders) but he bailed. Every time I would get up or move slob was right there. Fast forward to two years ago when I really wanted another cat and saw how expensive maine coons were. I reached out to a cattery in Hudson mass, and the breeder had one of her cats that was currently being boarded at a vet because he messed outside his litter box and they were going to make him and outdoor cat. They didn’t want money for him which I mean who can pass that up? So myself and my friend kim made the treck
After heading to the big e and picked up max. The poor guy was stuck in a cage for a month at this vet and his owner (who was a vet) had a housefull of animals and kids so yeah I would pee outside my litter box too! Poor guy freaked out on the two hour drive home, poor kim cleaned out his poop filled crate on the side of the mass pike. It took him a good month to get situated and then finding out that he has cardiomyopathy has been a journey. But seeing him alone in the living room made me emotional (thanks hormones) how could people give up on animals? Yes I’m a super cat lady I guess but I have a huge heart and I can’t have children of my own so yes these are my kids. I’ve been alone for a long time, fighting for this disease for a long time, friends have come and go but these two guys laying at the foot of my bed will never let me down. Plus they are cute so that helps

Week 2

Here we are, week 2 post op. Tonight is rough for sure. I have a fever which is something that never happens I’m always 98.0. Puke bucket is beside the bed like when I was a kid and cold compress on my head. I will say I’m pretty good at taking care of myself. I mean what guy would honestly stick by someone like this? None of my exes would for sure. I know my body is angry at me for running around cleaning and running to the dairy farm to get my coffee milk. So for the next week until I go back to see the doctor I’m resting. I re jail broke my fire stick again and I will make use of my TV. I just hope this fever goes down I do not want to go to any hospital around here

Pain in my... kidney

I’m a week post op. Currently hanging on by a thread but that’s the beauty in healing.
Surgery day was like every other surgery except I walked in and waited for my mom to get water, and I walked away because I couldn’t eat and the smell of food was tempting, anyways, Doctor Seckin and Doctor Goldstein came through the doors and I was greeted with a hug by Karli and Seckin. I needed that more than anything. In New York I feel like everything is different hospital wise, I walked into the OR, all my other surgeries I went in on a bed hooked up to IV’s. So I walked in to the OR suite and got up on the table and then I could see people walking in and out setting up and all I could think of was should I make a run for it? The last I remember is the anesthesiologist hooking up my  IV then I woke up after in the ER when it was done. Craziness. I remember the post op nurses coming in and checking my incisions and I did not want to even know what went on down there.

Apparently my ovary was raised up by a string, I had a stent to hold my Ureter in place and endo was excised from anywhere you could think of.  I spent the night in the hospital, slept Sunday, and Monday had post op and dragged myself home. This whole week has been hell. I took myself off pain meds on Tuesday and switched to ib profen. This stent is the most uncomfortable thing ever, I pee like every hour and my back is so stiff and throbbing. I have two more weeks left with this thing. I’m going to lose my mind for sure.

Life Changes

First off, thank you to the 289 people that read my response to Dr. Zahn. Sometimes it better to put all of your anger and disgust into written form.

Some of you may already know but some do not, but next week I am heading to New York. I went a month ago and met with Dr. Seckin who is pretty much a surgical legend in the world of Endometriosis. After an MRI and yet another ultrasound, it was determined that I have to have another surgery. This time it requires a team of surgeons to excise the endometriosis. The thing that I like the most about him, is his technique of the blue dye contrast. He invented it and it will show the endometriosis which to me is brilliant. I honestly don't know what he will find, he didn't like what he saw on my MRI, hence the team of surgeons. I will have to have a bowel resection, so there is that. It may seem like my head is in the game but I am scared. I usually walk into these surgeries like a badass but something about going under again within a year is quite scary. I just want this week to fly by at work. I just want to get the pre op stuff out of the way... Also I don't want to die.

Dear Dr. Zahn.

Dear Dr. Zahn,

I am one of the 176 million women with Endometriosis. I just read your reply to the petition that over 6,000 of family, friends and fellow Endometriosis sisters have signed. 6,000 is a huge number. That is 6,000 voices that are now disgusted by your response. When you replied you replied to 176 million women. I reiterated that because I don't think you understand how many women you have dismissed in your response.

I will give you a little snapshot of my history with this disease. I was diagnosed at 22, after being in pain since 11 years old. My first doctor I ever came in contact with was a pediatrician who told me I had bad periods and to take naproxen and put me on birth control. That obviously didn't even touch the pain or the periods that would last for well over a week. At 16, I met with an OBGYN who again put me on various types of birth control, diagnosed me with IBS and put me on narcotics. At 16! narcotics?! I missed the majority of my senior year and almost did not graduate because of absences. At 21 I found another doctor (we are now at doctor #3), who talked about possibility of endometriosis and that we would have to do laparoscopic ablation and then I would be back to resume normal life. At 22, I had my first ablation surgery. I woke up in worse pain then I did before surgery. A year later, another doctor, (we are up to #4 in case you lost count). This doctor explained how ablation is the best course of action and also an IUD should "fix" everything. Well, surgery #2 at the age of 24 and again the same situation, pain was far more worse this time, to the point that I was out of work every month during my period and some days beyond that because the pain was too much to even function. At 26 I had excision and at 31 a hysterectomy from adenomyosis. I gave my uterus to this disease. To tell someone at 31 that you can't ever have your own children is not only devastating, it's heartbreaking. 

I am now faced with yet another surgery at 32 years old. There were symptoms that went unnoticed by different doctors. So if you count all the surgeries this is #5. This surgeon is out of network and out of pocket. It would have cost me $7,000. Even with out of pocket deductibles from insurance. I got United Healthcare to approve a Gap Exception, and they listened to me talk about Endometriosis. I had an insurance company understand Endometriosis and approve me in under 24 hours. You couldn't even give us a proper letter and explanation? I know that if I had a proper diagnosis early, as well as a trained and skilled expert that was covered then I wouldn't be where I am today. 

I am 1 in 10 women that are waiting for change. I will not stop until you listen. We are awaiting a more valid response.


Respectfully,

Allison Monteiro

15 days

I am 15 days away from my 7th surgery in my lifetime. 4 just for endometriosis. Now 4 becomes 5. There are many women that have had more. I want this to be my last. I am praying that this will be my last. I remember my first surgery vaguely. I wasn't really scared I just went about the motions. The same feelings for the rest of them, I just walked in and did what I had to. This one however is different. I am afraid of dying. I was filling out my health care proxy, and it said burial or cremation? I said to myself,do I want to be on a mantle or in the ground? Then came the feeding tube questions. I've never in my life had a health care proxy. But this surgery is going to be huge. I won't lie that I'm scared. I trust my doctor more than anything and I know I'm in good hands. Also there is the mindset of healing. This time I'm out of work without pay. Which stresses me out financially. I want to push myself to get better as fast as I can but I did that last time around and went back too soon. So much to think of. It's in gods hands for sure. Just take the wheel and make me better. I'm sick of being sick!

1925..

Today was an emotional day. We took my Pepere out for his birthday dinner. He will be 92 tomorrow. He still drives and takes care of my uncle that is mentally retarded. Looking at him, I could see how old and frail he is. I know that he isn't going to be around forever and I just wanted to cry seeing him. 1925 was the year he was born, and my dad's mom. My grandmother passed in 2003, which is easy for me to remember because I graduated 3 month's after she passed and I think of her every single day. Day's like today are precious because those days you can't get back. I regret not spending as much time as I could with my grandmother. I wish I paid more attention when she was around instead of just grumbling that we had to drive to see her. That's why today I was fortunate to see my Pep. I pushed all my problems and B.S to the side because family is important. Happy Birthday Pep. I hope you are around for many more birthdays.

Sorry not sorry

The title should speak for itself but you aren't a blogger with just a headline and nothing in the body of the post so here we go.

I have been a moody, miserable, bitch lately. Yes lately. Many are probably saying it's been like that forever but hey that's your opinion so go for it. I am not going to apologize for it. I would've hoped to have my life back after it being destroyed at 22, but unfortunately I now have to see a doctor in New York who is skilled in advanced endometriosis. I honestly love Dr. Kip and I am thankful for him everyday and he is a skilled surgeon but right now my endometriosis has taken over vital organs (I don't have too many of those left, LOL), and I need to figure out what to do. I am scared because I know what the outcome is and with the outcome faces many challenges financially and emotionally. I will do what I can to get my life back I am still somewhat young and I know I am a warrior and I must fight. It is just incredibly hard when I have to face the potential of being out of work unpaid and such. We don't pay into TDI and because I have a "pre-existing" condition I can't get TDI on my own. I know I am thankful to have parents that could help me out but I don't want them to. They do enough. So that's an issue weighing me down and the whole toll that surgery takes on the body. I have done well prior surgeries but I'm afraid for this one. I worry that my body won't handle it and the cat's will be homeless living on the street. So yes I will not apologize for being moody. It's tough because I don't take my pain meds, I try to handle it without it, and right now I can't eat without getting sick. So I know that meeting with Dr. Seckin may be my Hail Mary. So I'm not sorry for acting this way, this is my life..

Hysterversary from hell

So one year ago today my life changed. I wasn't nervous I just walked in and went through the motions of giving up my chances to ever have my own children. I thought I could be strong, but lately I have hit such a wall. I keep wondering why me. I don't know what I did that was so wrong In life. I wonder where I would be now without endo. Would I be married with kids? Would I actually not have any worries? I know people try to reassure saying oh you can adopt. Please don't... because it's not the same to someone who wanted to feel someone inside their belly. The only thing I've experience is having a uterus and cervix being pulled from my vagina. I guess you can say I gave birth to my uterus. (SARCASM). I feel like I just need to escape my life. I just want to scream to be honest. Endo keeps chasing me and I just keep drowning deeper and deeper. I will say I am pretty good at acting. Especially when I come into work and just go through the motions. I honestly saw myself in a bigger better place than this. It's difficult to date, all anyone wants is sex, and no one wants to date the sick girl that sometimes can't get out of bed because the pain is too much to bear. Yes those types of men seem to exist and for some reason I attract those types. Lucky Me.

So yes, happy hysterversary. All I got out of this day is a iced tea from Starbucks and a long 8 hours of work.

33 before 33

I will get to the headline shortly, but here I am my last day being 31. This time last year I was cancelling my trip to the Dominican, and finding out I had to have a hysterectomy. Both were two huge decisions that I never wanted to really do at the time. It hasn't been an easy year. After my hysterectomy I was out of work for 6 weeks. A little over 2 weeks was unpaid so I had that going for me. I have felt off for a few months after it. There was one week where I was at home crying, I was looking at the dilauid and the Appleton estates rum and thought to myself why not? I can't have kids, I'm fat, no one want me, I'm in debt up to my eyeballs, and what more do I have besides Slob and Max. Well, I hit my LOWEST point. I actually was going to do it. I haven't told a soul, the only person that knows (well now the cats out of the bag) was a kind voice from the hotline I spoke to. I know I'm not the only one that has been there. Having this chronic illness can effect everything from your body to your mind to your heart. I became a hobbit for the months passing. It wasn't until this year that I actually started coming out of my shell. Yes there are times I am like FML but I will never ever try to hurt myself. I may not have a giant amount of people in my life but the few that I do have care and I would not want my cats to be homeless. The entire time I was thinking about Poppy. I thought that what would she think? How would she remember me? I know she is not my child but I care for her so much that I want to be there for her when she needs someone. Anyways that was how 31 went for me.

So to explain the whole 33 before 33 thing. I was laying around after vacation thinking that I need to do something, so I started making a bucket list of things to do before I'm 33. I took out the breaking a piece of wood with my head because I don't need any more surgeries. I just think it would be fun to do these things. After I do them I will cross them off my list. I actually just got my palm read tonight so that is off my list. Maybe I am starting a yearly tradition but whatever it may be, here's to the next year of my life, whatever it may be.

33 things to do before I'm 33- in no particular order 

1.Swim with wild pigs

2.Run a 5k

3.Go without makeup for 2 weeks 

4.Take voice lessons 

5.Skydive

6. Finish a 1,000 piece puzzle 

7.Go to Canada 

8.Get another tattoo

9.Ride in a hot air balloon

10.Knit a scarf 

11. Drink a gallon of water daily for a week

12.Have my palm read

13.Learn how to sew a button

14. Learn to love myself 

15.Go wine tasting 

16.Make fresh pasta

17.Learn Spanish 

18.Unplug for 48 hours 

19.Achieve my happy goal weight 

20.Ice skate

21.Fly in a helicopter 

22.Watch the sunrise

23.Hike

24.Graduate with my degree

25. Go to a movie alone

26. Read the Bible 

27.Learn archery 

28.See a musical

29.Let go of the past 

30.Meditate

31.Go see Statue of Liberty 

32.Go apple picking 

33.Find my soulmate 

Enough is enough

My heart aches tonight for Allison. She was reaching out for help for some relief from this demon of endo and these doctors did NOTHING. So this warrior, this angel took her own life. How many more of us are going to do this? How many more will it take until someone does something. This disease is not a joke. These are people's lives! Compassion is needed for chronic illnesses. Education is needed and dedication. All we need is someone to listen and hear us. I am absolutely crushed. My heart can't take any more hurt.

Hey June

What a month! I barely know what to start with.

So, next month is my hyster-versary. It's been one year already! I wish I could say I'm doing okay but with the endo possibly back and the ovary not functioning plus a cyst it's been hard to swallow it all. This time around I'm refusing surgery, I'm going to do what I can without the cutting apart my insides. My doctor described endo as cancer. He said because it grows and spreads and endo has nerves and such. So crazy to see it like that. My mental state has changed so much this past year. I'm more open with everything and I say it like it is. I won't settle for less than I deserve in life and even if it means I will fly solo forever so be it. I know what I want and if they find me they find me. I'm not looking for someone to save me, I've saved myself many times. I just want someone to be real. That's the thing about pain, it changes everything.

I will say I'm grateful to those that have stuck around and been there for me. I am lucky for that. I am also grateful to be finally getting away. I may be a little self conscious about my fat ass in a bathing suit but whatever. I won't be seeing these people after vacation and to be honest I just want to get some sun, clear my head, flirt with some cute guys, and drink. I deserve that. So this time next week I will be sunning it up.. I will say life is getting there. Some speed bumps on the way but I keep on driving over those fuckers..

Let's see how the rest of the month rolls out.. keep it classy!

The struggle continues

I haven't felt this low in a long time. I can't believe my body is trying to yet again kill me. You figure with my stomach is knots and not being able to keep much stuff down that I would be losing weight. Yesterday I had the endo bloat which resulted in me looking 7 months pregnant. I finally reached out to my doctor. Everyone always says, why don't you just go see your normal doctor, or just go to the hospital. Well let me drop this down a notch. If I go to my regular doctor she will not understand Endo and make me out to be a moron. If I go to the hospital then they will again be uneducated in the disease and just push morphine. Dr. M has helped me when I have fallen down and was giving up hope so here he comes again to sweep me up. I honestly thought after the hysterectomy that this would be the end of ally problems. I can't believe how naive I was. This stupid beast is rearing it's head and attaching itself to whatever I have left. So off I will go for yet another surgery. I am a pro at this. I know this low that I am feeling will surpass, but for right now I am just exhausted. Waving the white flag....

Mind wandering

I tell you the drive home from work was very blurry. My mind went through a million thoughts as it does pretty much daily. Yes, I have more lows than highs lately and I feel so overwhelmed. The pain I felt when I was only 22 is back. The pain when I had a uterus is back. Why? What did I do to piss someone off ? Why am I dealt the shitty hand? Obviously there is not much to be done it's something I've lived with and there is not much more they can take from me. Believe me I have faked the happy face and the brave face when the pain is so intense, when the pain feels like barbed wire shredding my insides. But lately I'm done being brave and faking that I'm okay when to be honest I'm a mess inside. I can't even pee without wanting to scream because I get sharp pains shooting down my legs. Even laying here in bed being still as a corpse and it's like someone is taking a knife and repeatedly jabbing my cul-de-sac. This pain is real. This pain is endometriosis. 

On the way home I kept saying to myself I can't do this anymore I'm just done. Then this song blared over my speakers saying please don't leave quite yet. Listen, I would never kill myself so let's take that right off the table. I'm just saying I don't know how much more I can take how much pain and hurt and loss I can take. I'm out of my mind right now begging for some relief. I'm not who I was before. Pain changes you. Pain makes you bitter and cold. Yes I'm so bipolar lately and I will slap on my I'm okay face In public but it gets old real quick. I hate you endometriosis. I want my life back, I miss being allison. I miss me.

April showers...

They say April showers bring May flowers. I hope that refers to life itself. So much going on. My doctor wants me to try to have my eggs frozen before I get my ovaries removed. So I found an amazing place and want to see how much surrogacy would be because if everything with the egg retrieval goes well then I could have my own child if the price is right. So I am looking into that as well. I love how supportive my boyfriend is and the fact that he's trying to understand endometriosis. That's a huge deal. So maybe thats my may flowers.

My April showers is just life in general. I'm the type of person that lets stupid petty things bother me. Normal people would shrug stuff like that off. I on the other hand know my worth and know how hard I work. When you feel under appreciated and fed up new opportunities come forward. Even the nicest person has their breaking points.. 

The lonely hour

My heart is so heavy right now. I hate that I may have to have yet another surgery. I mean what's one more right? Yeah no. I don't want to go through it all again. With any chronic illness, you have good days and bad. I'm at the bad days right now. Also not being able to see my boyfriend for 2 weeks is just adding onto it all. I feel very alone and just emotionally drained. I am also blaming the rain for this mood swing from hell. (Sorry milli vanilli) I am all for staying positive but when your doctor calls and says we will do whatever we can to avoid surgery but I'm not sure how much more pain you can take. Well doc, I am not taking pain meds, I refuse pain meds, so therefore I can just push through. What I want is my uterus back I want it to be replaced with a healthy one. If I could have one wish that's what it would be!

Ugh

And it keeps coming back.

Well, as I knew deep down that my endo would come back, my gut was true. I also knew that my hormones were all over the place and that is because my endo has made its choice to hang out on my
Ovaries. Honestly, everything that was said to me in the last 24 hours is a blur. Bits and pieces flash forward around me and I'm left again with the pain inside my soul. My heart is shattered again. Here I go sweeping up the pieces. Surgery is a no. I can't put myself through another surgery.  I will find other ways to deal with the pain. This time is a bit scary, the dizzy spells, back pain, shooting pain down my legs, and other added bonuses. Some of which I've never experienced until now. For now my focus is on doing what I do best, pushing through the pain. I'm not this huge god person but I know there is a reason for all of this and I have yet to figure it all out, but I know he most likely knew that this was something I could handle. I just wish he would've waited until after I attempted to freeze my eggs. Which again, maybe he wanted me to adopt. I would've totally made some amazing babies in fairness. I am trying to be strong but when I am laying here alone in my dark room, that's when my thoughts start to wander. I've gone through this for a good part of my life I should be well versed in all of this. I just need to hang on tight.

8 months later and...

Here I am 8 months post op. It's crazy how time moves so quickly. I honestly think having a hysterectomy has changed me a bit. Some good and some bad. I am the same ole me but there are parts of me missing and parts I have gained back. I have a huge problem with trusting someone. I put my guard up so I don't get hurt because I feel like I give so much of myself to everyone. My heart has been destroyed and I've been used. To think back on how immature I was back then and let people walk all over me. I felt
Like I never had a voice. I am starting to get my voice back. I believe that being blatantly honest is something that you need to do especially in a relationship... yes I said relationship. It has been far too long since I've said that word. To actually open up to someone and let my guard down is a scary thing. Starting a new relationship scares the shit out of me. I don't remember what it feels like I feel like I need a handbook for something. Oh and when it comes to showing feelings or getting compliments, I can't tuck and roll fast enough. Okay maybe I'm being a little dramatic. I am starting to trust again and feel comfortable with someone. Who would've thought after the last 5 or so years that I would make it to a second date? So maybe it took having my life flipped upside down to start being who I was before. I guess the old me never left and it was always there. Sometimes we have to do what scares us and we have to let our guards down. Not every is a stupid jerk face cheater.. (see what I did there?)

So for now, let's see where the wind takes me