The rainbow

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I want to do so much with my life, sometimes it’s hard to see past the rain and look for the rainbow, I am trying to remind myself to do so every day. This illness has beat me up, threw me down and left me on my ass but it is slowly starting to teach me things. It really can make or break a person and it can be challenging to not let it break me.

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What my illness has taught me… so far :

1) Not to be judgmental. I know I walk around with a big smile on my face but inside I feel like I am dying. I not only struggle so much with my illness, but with self esteem and mental disorders as well. Never judge a book by its cover.

2) I can make it through anything. I wake up everyday thinking I will not make it through the pain that has been thrown at me. But somehow, each day I live and go to bed and wake up and do it again.

3) I am a spiritual being. I do not believe in God himself. I believe in prayer and the thought of something greater. I believe it is within ourselves and that we are our own God. There’s been many times where I have asked to get through this day or that day.

4) Live everyday you can to your best ability. I have to admit I am quite the couch potato but it wasn’t like that before my pain really started. I am going to be working on this step in the up in coming weeks but my pain free days are becoming less and less, I try so hard to make the days I am pain free enjoyable and happy. (I will get more into this in a bit)

5) Love your family. They really are the only people who are there supporting me through everything.

6) The power of music. I have ALWAYS, always loved music. I used to think I would be some hot shot producer in L.A when I was younger.. how wrong was I? Well anyways, I just have to put in a G.Love CD and sit outside and all my troubles and worries are gone for that moment in time. 

7) I have more on the list.. but I can’t think anymore.

 

 

My goals in life to make myself happy : 

1) To have my career. I want to be a lawyer one day, starting with baby steps, focusing on rape victims and similar situations. I will start

2) To live on (or very close to) the beach. I adore California. Everything about it is what I want. I love how everyone is so laid back and friendly. I love the views, how you can live in a shack and no one judges you. I want to be the girl that lives in the shack on the beach with tons of surfboards in her front yard, sand all over the furniture. It’s just too damn expensive there. Lower your prices California!

3) To learn how to surf and learn how to do it well. I have always envied people who can surf. It’s such an amazing sport. I want to get the feeling they get when they are in a huge wave just cruising along. And I want to surf everyday.

4) I want to swim with dolphins. The thought of dolphins make me incredibly happy, what could possibly be better than swimming by their fins or getting a dolphin kiss?

5) I want to learn to be happy. Happy with myself, happy with my life, happy with others around me.

6) I want to have more happy days than painful days.

7) Get married and have a family. I don’t want a huge wedding but I want it to be full of love and passion. I want to write our own vows and be hopelessly in love. I want to have another baby or two and then hopefully get all my lady parts removed.

8) I want to retire somewhere tropical. I am such a beach babe at heart and stuck in Maryland. Marylands great and all, but not if you don’t have a boat.

9) Just like before, I am sure there is more.

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All I need is love…

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I’m such a good person, have a big heart, always put other people in front of me. Yeah I am moody and don’t know how to control my emotions half the time but not only am I a female but I am a bi-polar female going through menopause. I listen to everyone else complain and try to give everyone else advice and be there for everyone else, but who is really here for me.. not judging me, not making me feel less than perfect. I strive too hard for perfection, why do I always feel 100% less than that? Why do I feel like I give so much of myself to other people and get so much less in return? I shouldn’t have to try so hard with everything I do, I shouldn’t have to be judged for everything I do. All I want to do is cry and be heard and not judged or told to “just be positive”, “everything will be okay”. All I want is to be understood. I’m tired of being criticized for how I think and how I act all the time. I am different and I will always be different. I am sick and I will always be sick. I can’t help it, I just want someone to understand me. Anyone. I’m tired of feeling like I am so alone in this world. Yeah, so I am not a social butterfly, yeah I have social anxiety and I am way too over critical of myself. Yeah, I think too much about what I am going to say, what I am going to do. But maybe if people weren’t so quick to judge, I wouldn’t be so set back. Does anyone realize how amazingly funny I am? That is probably the most overlooked thing about me because I am shy and no one takes the time to get to know who I am because no one cares to try. Sorry I don’t open up or light up a room with my smile like I would like to. Sorry that people ask “is she always like this?”, sorry that excuses have to be made for my behavior sometimes. It’s not easy, not easy being me at all. Does anyone realize how many thoughts and emotions run through my head every day? Does anyone realize half of me is thinking of how much pain I am in and the other half is trying to hide it while trying to think of what to say? Does anyone realize that menopause at 24 is extremely hard? On top of deathly pain? I’m just so so tired of everything. Of the pain, of the heartache, of no one understanding, of trying so hard and getting no where, of trying to show my love and affection, of trying to hide my pain, of trying to impress everyone, of trying in general.

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I don’t think people realize how much love and affection really help a person heal. Thats all I need. Nothing makes me happier than my son showing me he loves me. He came into my room this morning and woke me up by saying “Mommy I just want to cuddle”. How could I ever be mad at that? I don’t ask for much really but I think I deserve it. Love and affection is all I need.

5 months in…

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This has become awfully hard on me. This is my 5th month of Lupron. I’m not sure if I have felt worse or more drained, physically, mentally and emotionally. If you didn’t know me (and even most people who do know me) you would think I am fine and not ill. I try and hide my pain, I hate people feeling sorry for me, or even worse, thinking I am just making this up. You aren’t sick, you don’t look sick, how can you be in so much pain all of the time? I keep all my pain and worries inside, I don’t want to be a burden on anyone. I feel so alone and when I do complain, I feel even worse. Like no one is listening to me or they are tired of hearing it? I just want to cry, all the time, but I don’t.. I can’t. What almost 4 year old would want to see their Mommy cry all the time? Whens a good time to let go?

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So much is going on right now. These last 5 months, I have been in and out of what I would say has been the worst pain. So tell me how is this Lupron helping? I am constantly nauseous, I have migraines almost every day. My side, lower back and lower abdomen feel as though someone is constantly stabbing me. Pain pills don’t help, heating pad doesn’t help. My knees are killing me and my hip is starting to act up now. It takes everything I have to walk up the steps to my apartment. My hair is like straw and is starting to fall out which is really scary to me. I’m trying to use every product I can but it’s not helping. I thought I just had really dry hair until I did some research and the drug is doing this to me. I haven’t told anyone that because I don’t want anyone to freak out. I’m depressed and I feel horrible about myself. I am not me anymore. I am not fun. I don’t want to go out and do anything. My legs constantly hurt and really all I want to do is lay down. I am so tired ALL THE TIME and I can’t drink coffee anymore (I used to drink 3 cups a day and suddenly the smell of it makes me want to run to the bathroom). I just want to scream and cry and scream some more, my hormones are all over the place.

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I have been on this for FIVE months, FIVE. And now my doctor wants me to do at least EIGHT. WHAT? How could you say six months and change it to EIGHT? I can’t take much more of this. Yes I know my endo is severe but can’t we find another treatment? I’ve been to two specialists who say this is the best option for me. I just don’t understand how this drug could be okay for people to use. It’s killing me, in every way except literally. I’m so miserable and I am almost positive I am going to have osteoporosis. I am just having a really hard time with this.

That’s all for now. No funny or witty post. Just me complaining.
Thanks for listening.

An update

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Wow, sorry I haven’t written in so long. I’ve been a busy busy bumblebee. Well more like a depressed, menopausal, sweaty bumblebee, same difference. Ooovay! I have been a boiling pot of emotions just ready to explode. I have felt so depressed, lonely, sad, been picking myself apart constantly. This has all been really bad on my depression. And the WORST part is everyone thinks I am handling this so well. I am so good at keeping things inside and wearing a smile, I think I could win an award for it. Literally, all I want to do is cry, all the time. I drop my pen and I have to wipe away a tear before I start balling. I’m setting up an appointment to start talking to someone again and get my crazy pills back, which is the one thing I told myself I would control since my last meltdown, but hey, shit happens, just hate letting myself down and feeling like I am this crazy person.

I went to a pelvic pain specialist on Wednesday and he did all sorts of crazy tests and one hell of a painful exam and turns out I have a few more things wrong contributing to the pelvic pain. I am being treated for endometriosis already, now I have about 180 other things to treat. I still don’t know and understand everything but here is the list my doctor gave me of all “17 current problems” along with my notes. Still don’t understand what anything is BUT this has been quite a learning process. Here goes (please note : some of these I already knew I had obviously)

Endometriosis of rectum and bowel
Leg length discrepancy (right leg is longer than the left leg, lol)
Inflammatory vaginitis (inflammatory skin condition of the vagina which causes pain, discharge, irritation, itching)
Interstitial Cystitis (inflammation of the tissues of the bladder wall causing pelvic pain and urinary pain)
CPP (I think this is just Chronic Pelvic Pain?)
Chronic pelvic pain (name says it all)
Ovarian cyst (have these quite often and large and muliple)
History of recurrent yeast infections (gross I know, sorry)
Bipolar disorder (Yes, yes I am crazy)
Depression (trying to keep this under wraps, not working so well)
Internal endometriosis (umm, isn’t this the same as the one below this arggg)
Endometriosis
Dyspareunia (this is a fancy word for painful sexual intercourse)
Ilioinguinal nerve neuropathy (this is damage to the Ilioinguinal nerve, still working on this one)
Obturator nerve neuropathy (entrapment of the nerve causing groin and thigh pain, weakness with leg adduction, which I could feel VERY strongly during the awesome exam)
pudendal neuralgia (“a painful neuropathic condtion that is cause by inflammation of pudendal nerve”, still don’t understand this one either)
Pelvic Floor Tension Myalgia (Myalgia is muscle pain, so this explains itself).

So new treatment plan is continue the lupron and letrozole (yay?), add gabapentin which relieves neuropathic pain, add Elmiron
which is for the IC, Femhrt for my HOT FLASHES and nightsweats (this I am excited for, that has been a rollercoaster) and a yummy cream for the vaginitis (sorry, gross again). Then I will be going to physical therapy and to see a counselor. And add one some more pills, yipee.  And last but not least, a new diet. Cutting alot of trigger food and drinks out, which is going to completely suck.

That’s all I got for you today, just an update. Life is crazy, this has been quite a rollercoaster ride but I am determined to get better!

 

Raging Bitch

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I have gone from a vibrant 23 (I think) year old to a cantankerous Betty White like old lady in a matter of a month. This lupron really is not a joke. I have done the normal (maybe on the slightly mental side) amounts of researching this drug, and I have to say not much was positive about it. I took into account that this was the FIRST doctor willing to do something about this pain and hey, everyone’s body is different. It’s been exactly a month and really it hasn’t been intolerable yet. Hot flashes aren’t exactly a walk in the park but it’s nothing compared to other pains, plus what’s so bad about taking off all your clothes and walking around naked.. depending where I am of course. The night sweats really do suck, but again, what’s so bad about talking off all your clothes? I know my boyfriend doesn’t mind. So back to the old cantankerous rex (pardon the rex part, it sounds like a dinosaur to me). My joints. The stalkerish research I have done on this drug and talking to a few different professionals about it, “joint or muscle pain”. And really, I didn’t think anything of it at first. I was carrying my 3-year-old monster and my knee gave out. I thought, wow, this little guy really put on a few pounds what am I feeding him? But a couple of days later, walking up the steps, carrying nothing but my 10 pound purse and BAM! My other knee. It’s been a struggle trying to keep myself balance and my knees from giving out. It’s quite embarrassing, I am 23 years young trapped in the body of a middle-aged woman going through menopause, LITERALLY! What’s it going it be like when I really am going through my NATURAL menopause.

(I love this picture, this is exactly how I feel everytime)
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Not only are my joints giving out (today my shoulder is starting too by the way) but I have a medicine container with the days of the week on it, a regular sized one, and the worst part is.. I need a bigger one. The only reason I didn’t buy the “extra-large medicine box” was there was a picture of an 80+ man on the cover with 20 pills in each day. I don’t want to be him, but in a sick way, I am him. For now I have my letrozole, black cohosh, fish oil, calcium, magnesium and zinc and my multivitamin. Oh vay! Not to mention the pain pills just floating around my purse and the medicines I keep at home to take at night. So not only am I 100 years old, but my bipolar seems to be flourishing. That monster is already hard enough to control on its own but now it’s a real raging bitch. Have you ever felt like you were in a twilight zone and you aren’t really there but rather you are looking down at yourself acting a fool. I don’t even know who I am anymore or what I am saying half the time. And I like to think I am taking this treatment very well but sometimes I wonder, sometimes it doesn’t even feel like I am here, that this isn’t me and this isn’t my life. By the time 3 pm rolls around I am beyond tired, like fall asleep at any second tired.

 

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Just one more thing before finish this update, I am so, so SO very lucky to have such an amazing man in my life as my biggest supporter. With everything we have been thrown with over the past couple of months he has stuck by my side and loved me and hugged me and held me through all the good and all the bad. I don’t think this is something the average couple could take on but we have managed to take it on and in a way make lemonade out of it.  Whether I am a raging bitch or a loveable sweetheart, he is there with open arms. I have never met a man like him, he is my rock.

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Oh my lanta, oh my gosh (insert any curse word you can think of and time’s that by 100). This pain, holy cow, this pain is horrific. I just want to cry, a good shower cry, with Norah Jones blaring on the bathroom sink (I am very fond of these kinds of cries). Up until today, everything has been quite bearable. I’ve had the hot flashes, night sweats quite often, very random dreams (I would go into detail but I would need to change my blog to rated M, although these dreams could have something to do with reading ‘Fifty Shades Darker’). Stomach pain that at times has been out of this world bad but I am used to that by this point. But today, TODAY just seems like a bad dream and at any second Steve is going to wake me up because I am sweating, kicking and screaming. My legs, my legs feel like they are 500 pounds each and no I haven’t been working out. They are so crampy that they hurt, hurt badly. I remember laying in bed when I was younger and not being able to sleep because my legs hurt so bad and everyone always said they were growing pains, well these are like that, except worse. It pains me just to walk to get water which is 30 steps. And I can feel my back, shoulders, arms and hands going down hill too. I feel like I could pass out at any second. How I am at work today beats me. It feels like my ovaries are being engulfed in cysts right now, at least this is how it has felt in the past but how am I supposed to know if this is cysts or the medication? I believe there is a world war going on in my uterus and each ovary is chucking grenades at each other. I want to cry, no I NEED to cry. I’m so emotional right now I dare anyone to do any wrong today. I feel like I should go running to the ER but we all know what that is going to do, hours of sitting around to hear, wait for it, wait for it… nothing. My body is so out of whack, is this what menopause feels like? I don’t know, this is all so new to me. So many changes are occurring right now, and now I can feel them, in full force.

 

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I need to change the name of my blog. Before, honest to god, I thought this wasn’t a big deal. It’s so common for women to have this, I thought, oh it will be over and done with and I can move on. Relieved that I FINALLY had some answers for all my pain. Boy was I WRONG, there is no END. I will be stuck here forever. So I really need to change the name. Any suggestions?

 

Spread the word

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I always, always knew something was wrong with me. I know having extreme pain everyday wasn’t normal. But I really thought, I would never be normal, I still don’t think I will be. Until I was officially diagnosed with this, I didn’t realize how LITTLE is out there about it. How people just think this is “normal” for women to feel this way, how it’s just a “bad period”. How people not suffering through this don’t know how much pain we are in, how much I cry, how much I yearn for the pain to go away. Having a high pain tolerance, I can endure anything, I can walk around all day with a smile on my face, radiating all the happiness in the world. But no one sees when I break down, when I stop being strong and start showing my pain. It’s hard to explain to people about this in a world that doesn’t see it as important. You know, I get tired of hiding, sometimes I want to scream out all the pain I am enduring for the world to see. I guess I have been doing that lately. Seems like once you know exactly what is hurting you, it isn’t as hard to tell people. Before telling people you have been in extreme pain since you can remember but no one knows what is wrong with you makes you seem like you are faking it, at least to me. Now I have an answer and it’s much easier to tell people.

With all that being said, I want to start something. I know things won’t happen overnight but I want a REAL awareness campaign, throughout the state, the country, the world. I know there are small ones, but how often do you hear about them? I want people doing something, I want to see people who are suffering come together. I want to make t-shirts, slogans, bracelets, car stickers, the whole nine yards. I’ve already learned SO MUCH about this the past 2 months and I have been on a search to find people who are suffering for support not only for myself but to be able to support them as well. I know it’s hard to talk to people who don’t suffer the way we do.

I started a group on facebook last night called “Endometriosis Warriors Maryland”. For just starting this page yesterday we already have 24 likes. My ultimate goal with this is to find EVERY sufferer in Maryland and eventually the surrounding areas and bring us together. I want to hear and share stories, share laughter, share courage. I want to make this group big, HUGE actually. I want to eventually put together events for these warriors, put together awareness campaigns, have our own slogan, our own shirts, our own logo. So far, with this blog and the new group, I have found so many great people who are just like me and that is very important to me. As I said before, it’s hard to talk to people about something they don’t understand.

I plan on spending a lot of my time on this and I hope people are with me. I have an entire lifetime ahead of me to make a difference on this.

-Stay Strong

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