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My First Blog Post

INVISIBLE BUT STRONG!

HOW I FIND STRENGTH FROM MY INVISIBLE ILLNESSES

Be yourself; Everyone else is already taken.

— Oscar Wilde.

This is the first post on my new blog. I’m just getting this new blog going, so stay tuned for more. Subscribe below to get notified when I post new updates. In this Blog, I want to explain why I feel like my illness has made me better in so many ways!

To understand me you need to know my biggest belief “EVERYTHING HAPPENS FOR A REASON!!!!!!!” it is that belief alone that has tought me that for everything I go through, teaches me a lesson I need to know for the next event in my life. I truly believe that if I hadn’t ended up with these illnesses, had the past I’ve had and lived the life I have that I wouldn’t be the same person TODAY as I am. I wouldn’t be in the position to help others, I wouldn’t be strong enough of handle the challenges I’m currently faced with.

I hope through my blogs, emails and support that you too, will be able to face your challenges with strength, courage and knowledge that YOU are NOT ALONE!!!!

Featured

MY ILLNESSES & ME

Hi, I’m Tiahana I live with an invisible illness… well quite a fair few! Where to start… I have:

POTS: My heart rate goes through the roof when I stand up, among other fun symptoms

COSTOCHONDRITIS (replicates the feelings of having a heart attack… FUN.. NOT!)

ENDOMETRIOSIS: Infertility We’ve been trying for our first for 4yrs, oh and LOTS of PAIN!

HYPERMOBILITY SYNDROME: Extra flexible = more strains, sprains and dislocations!

MIGRAINES: Pain, pain oh and the vommiting! EXTRA FUN in BRIGHT LIGHTS! (NOT)

ASTHMA: Definitely not fun with the country on fire!

SILENT SEIZURES: Still being diagnosed, slowing in the brain showed on last EEG.

COELIAC DISEASE: No gluten 😦 Thankfully I’ve found lots of great GF recipes to share!

NEW DIAGNOSIS’S AS OF JANUARY 2020

ADENOMYOSIS – Abdominal cramping and infertility

POLYCYSTIC OVARIES – More abdominal pain and heavy periods, infertility as I have 22 follicles on the left ovary and 20 on the right

CARPAL TUNNEL – Tingling in the hands and arms with cramping, dead arms if i lift above my head!

STRESS – Apparently its causing my seizures, abdominal pain and infertility even withthe above diagnosis its the stress causing the cramps not the diagnosis’s themselves !!!! Seriously… some doctors!!!!

So Just a few things my body has going on, I’m sure I’ve still missed something due to the life of BRAIN FOG and daily PAIN.. which I’m sure I’m not alone with and that you suffer too, which may be what has led you here… or you know someone else living this crazy life

I’m here to help you understand your not alone and share everything I have learnt.. one blog at a time. If there is anything in particular your curious about send a message and I will respond or post a blog on that topic!

Feel free to check out the page, comment and email your questions and feedback and together we can be strong!

#invisiblebutstrong #Invisibleillness #StayStrong #zerotohero #YouAreNotAlone

Seeing a new specialist when chronically ill

I thought I would make a post about preparing to see a new specialist.

It’s an emotional experience, the hope, the wonder, the excitement and fear. The mental preparation of trying to create a balance of hope and anxiety of having them not listen once again.

The best advice I can give in this area are as followed.

1. Gather all supporting documents, create (or contact me if you would like a template) a list of all your symptoms, what they feel like and when they started along with anything that eases or triggers your symptoms.

2. Allow yourself 15mins of worry time a day and set an alarm, think best case and worse case and how you will handle each. Once the alarm goes off move your mind onto something more productive.

3. Don’t let your previous experiences with Doctors pose on your next experience. Not all Doctors are arrogant no it alls… although there are a lot. Give the next one and the one after the benefit of the doubt as you need to trust them to be completely open and they are more likely to help and listen to someone open to trusting them then someone closed off and hostile.

4. Bring a list of questions and write the answers as you may forget to ask or what was answered.

5. Bring a friend or relative as it may help with nerves as well as give you the support and a partner or close friend or relative may be able to help you explain symptoms more clearly if they have witnessed them or add in details you may forget or not realise you even do.

I hope these tips help you, they have helped me when seeing my new specialists latest being my neurosurgeon regarding my suspicions of having a CSF leak after many previous doctors tell me it’s just stress, or it’s in my head. This specialist has actually listened and believes I have a CSF leak without my suggestion. Finally listened to and heard after many previously have let me down. I hope you all have the chance to follow these tips and obtain great care from the medical world.

Till next time, rest up and take it easy!

My heavy heart – A poem from the conflicted.

My heart so heavy, such a tangled web inside.
For so many reasons..yet I still don’t understand why?
I know what’s going on in my mind, yet my heart… no clue!
It’s the reason why I lay awake, I don’t know what else to do!
So many questions, so many unknowns to tick!
Like why so insecure, why so sick?
My heart sleeps heavy yet shines so bright
As my strength and courage continue this fight
In my shadows and deep within lay quiet but loud all my fears..
I question should I keep smiling or at last break down and curl up in tears?

My heart beats way too fast, like me it doesn’t know how or when to slow down!
I wish I wasn’t alone all day and could be just out like everybody working in town.
I feel guilt, I feel like a burden and have no known purpose anymore
All I know is each day is a struggle, I’m now insecure and oh so sore!

I may seem lazy to others, I may seem like a bore
Every little thing I do now seems like a chore!
My heavy heart please give me a rest
Because I’m just doing my very best!

The end

I’ve been working on this drawing for quite some time now adding to it every couple of days and although I’m still not finished I thought I would share as it inspired this poem tonight , I’ve named it
“Heavy hearts burn the brightest.. the exploding web of imperfection, that is out heart 💓 “

I hope this helps inspire others to write and draw to help work through the hardships illness throws our way! We are stronger than anything that comes our way, our heavy hearts always do make us shine brighter in the end!! 🌟

What exhaustion feels like when chronically ill!

I remember when I used to finish a 12-15hr day at work and come home feeling to exhausted to make dinner so would chill and watch TV and order take out… that’s what I thought exhausted was, I was wrong!

Now I have good days and bad days and on my bad days the exhaustion is the worst. After just having two good days when I pushed myself to clean and sort our spare room I ended the day with multiple seizures at night then insomnia to follow through the night even though I was so exhausted I could barely stand.

Today now it’s so much worse as normal after good days. I’m so exhausted I can barely get out of bed, the very thought of needing to go to the toilet makes me tired let alone the thought process to gather enough energy and strength to make it 5m there then back without collapsing and having a seizure, the pressure in my head hurts so much more when standing that dealing with the pain of being upright is just too hard. I tried watching TV this morning but that was just too loud and took too much concentration too… I never you I could be to exhausted to watch TV!!

Food is too far away and the idea of getting up is just to complex, as I know how much pain it will bring, how much energy to make food not to mention the process my body has to go through to eat and digest it. So I don’t eat until it’s a necessity as hunger is easier than the struggle I need to go through to eat.

When this exhausted all symptoms seem to flare, even on medication my heart rate jumps to 135bpm just on standing, being upright can bring on a seizure, the headaches are 10x worse that my head feels like a giant heavy water balloon that’s about to explode as it’s so full, my heart skips more beats, my muscles ache everywhere, I get short of breath just by walking a few metres and my eyes strain over the easiest of things.

I go through this after each good day that I push my self even the tiniest bit, but I still do because on those good days I feel like the me I used to be, the me I have been grieving and having 2-3 bad days in a row are worth it to have 1-2 good days! Because my good days I feel worthy, i feel useful, I am happy and… I can get things done like washing and shopping, the daily things that any Healthy person can do easily … and accepting that that’s pushing myself, well I haven’t come to that acceptance yet.

So I now have an understanding on what real exhaustion feels like, I would give anything not to know as it’s absolutely the worst. When breathing is too exhausting you know your chronically ill! So when you have bad days like mine today, know your not alone, be great full for your good days, follow your bodies needs on your bad days, if that involves staying in bed all day like me today just do it! Your body needs it as it works so much harder than the average healthy person as it’s hosting a daily battle inside! Be good to yourself, you deserve it!

Dealing with stress with chronic illness

Stress can wreck havoc on anyone’s body at any stage healthy or not, it’s just what it does and so many doctors do just jump on it as a diagnosis as I’ve previously written about. But today I wanted to write how it affects someone with Chronic illnesses.

Currently someone from my past has come across my blogs, someone I’ve made it clear to that I want nothing to do with. Not knowing how he found me or why has caused me to stress more than I normally would, it’s sent all my symptoms into a flare as others in the same boat would understand!

When faced with such illnesses you lose the ability to control your thoughts, depression is a side effect of many medications for chronic illnesses which I do blame for the loss of control of stress as I was always so happy prior and had more control, I’m not depressed but the lack of control is definitely not great either.

My seizures can be triggered by stress, tachycardia and irregular heart beats happen more so when stressed causing even more symptoms or the same symptoms just worsening…. I don t know which is worse!

It makes recovery time longer, every day seem harder and every symptom more unbearable!

So please if you know someone with chronic illness, ask what you can do to ease their stresses, do they need a lift or someone to talk to etc. If you suffer from chronic illness like me, take a deep breath when needed, find a stress release that works for you whether it’s over riding your thoughts with positive ones, yoga, breathing exercises or distraction (that works best for me, puzzles or art are great) and lastly if you are the person from my past that has found this blog, send me a message that you’ve read this, how you found me and that you understand that you’re only making things worse for me and that you will stop reading my blogs, and will stop looking me up and will just back off forever! (It’s been 13yrs!)

Once again thank you to everyone for your ongoing support it’s been amazing, I created this blog to help others going through similar issues and the messages I’ve received knowing I’ve made a difference is why I do what I do! You’re not alone and I’m here to help in any way I can. So please feel free to share any concerns or questions or ask what you would like my next blog to be about! Thanks for reading!

Invisibly ill poem

Outside I may look all pretty, outside I may look calm

But on the outside you can’t see my own body causing me harm

Outside I look happy, on the outside I hold a smile

But on the inside it feels like I’ve just run a mile

My heart is always racing and going way to fast

While Doctors dismiss saying “ it’s due to stress from your past”

I know it’s not stress because I know MY body best

Which then made me feel better when proven on a test

But each new diagnosis, comes with a new pain

With that, can only come a new life lesson to gain

For everything happens for a reason, this much I know to be true

But knowing that doesn’t help me to know how to feel or what to do

No known purpose, no way to purposely fill each day

Who I once was, now changed in almost every way

Days now filled with chronic pain & hope some days lost from fears

Worrying, hopes crushed & insecurities ending in tears

Some days aren’t so bad, then not over doing is the challenge at its best

Yet most days are so bad and painful, that all I can manage is Netflix & bed rest

The hardest part of this life, are doctors that are mistreating and condescending

That’s why we have to self advocate, for our bodies we are continually defending

Otherwise we are lost to misdiagnosis & wring medication

These doctors need to have constant empathy & compassion education

They see us on the outside, when the red to look deeper

As they are paid to be the illness and answer seeker

Although having an answer helps a lot, it’s also after care we need to know

To which way our diagnosis can end up, which way our health & mind can go!

The downside to it all is our health changes so fast

That all we can think of and want is now in the past

We start losing friends when our life gets to complicated for them to deal

But shows who your “true friends” are… or maybe that’s just how I feel?

All I know, is that I wish this was a bad dream & that this life isn’t REAL!

Chronic illness, the constant battle against yourself!

I remember getting an ordinary cold before all this and feeling like I was on deaths door and how I missed being able to breath or smell properly… and that was only after a few days! I would never of and could never of imagined life changing so much that a cold would seem like nothing and that every day would become a challenge but it did, and now I just have to accept it although still challenging it!

It’s the constant battle of having to remain in control of your mind set, as negative spirals can easily get out of hand, but so can hope and positivity and one will generally lead to the other. So fighting to keep a balance is a must although a lot harder then expected.

It’s a battle of challenging yourself so you progress not decline but not pushing yourself so you make things worse ( still working on this one as I lay injured on bed rest from causing more damage )

It’s a battle with Doctors taking you seriously and fighting to be heard and treated with respect.

It’s a battle against the population and the discrimination and abuse for not “looking sick“ and having to feel like we should explain ourselves when faced… although it’s nobody’s business! We are treated like we are lazy when it takes us 3-10x more energy just walking then the average healthy person! No wonder why we can’t clean or work often if at all! If only people understood how it feels to live in our body for even a day!

It’s a constant battle of finances, everything costs so much but yet we can’t work so have to rely on our partners or the government payments which then adds guilt and more discrimination. Not to mention the shame of having to ask how much each test or appointment will cost so you can see if you can get enough together or have to go without till you can afford it and live longer in pain!

It’s the emotional battle of grieving the loss of who we once were and the things we can no longer accomplish, the loss of identity and having a purpose in life… the career, the future plans that have to change, the stress of deals with each symptom on a daily basis and the stress of each new symptom and how to handle it. The stress in general of all the above would break most “normal” people!

The toll that chronic illnesses have on relationships, romantic , family or friends. It’s a battle within of what to share and what to hold back! Losing people who you thought cared and feeling like a burden or a negative Nelly when opening up.

The battles we face on a daily battle is astonishing and horrible! So if you’re reading this and you’re lucky enough not to be faced with chronic illness please understand what we go through before you judge someone with chronic illness as there is a lot going on within…. or just every day people on the street, you have no clue what’s going on inside.. because we don’t “look sick”!!!

If you’re reading this and like me are facing daily battles due to your illness…. please remember… YOU ARE STRONG, BRAVE, FIERCE AND TOUGH! Hang in their, keep putting up the good fight as each battle won is extra strength to help you have the determination to win them all! But also know it’s okay not to be okay and to ask for help when you need it as we often do because YOU DESERVE IT!

Take it easy y’all! Xo

What I wish my Doctor would of told me!

I often look back on how everything went from so good to when it all went down hill and how I wish I had been told what life was going to be!

I wish I was told that having one condition of the autoimmune nature would mean that there was a good chance it wasn’t going to just stop there, maybe then I could of been more mentally prepared! I wish I was told not to push myself on my good days or it would take anywhere up to a week of hell to get back to my normal hell rather than having to learn the hard way and had been given tips on how to stop myself from pushing myself as it’s so easy to do.

I wish I was given the option of treatment or told who specialises in my conditions not just left to deal with it on my own and not have any of it all explained. I wish I was told how bad it can get on bad days and how to manage. It’s only through my own research and the words of others I’ve learnt advice on what to do during a flare, things I wish I had known from the start!

I wish I was listened too, believed and made to feel that everything will be okay! I wish I was shown compassion and empathy instead of judgement.

I wish I was told that outsiders would judge me as I look well but am far from it so I could prepare to deal with the stigma “that I do nothing all day when I should be working” and given the advice that a councillor would be of great help in dealing with the diagnosis and the mental exhaustion that comes with it.

I wish I was told that my mind would become a maze as I live each day alone with my thoughts, and how to overcome living inside my head!

I wish my doctors made sure I was prepared for the financial burden being unwell would put upon us. That there would be many costs for ongoing scans, regular specialist appointments (that cost an arm and leg), medications, walking aids and devices to help with everyday life!

I wish I was told to prepare financially as I wouldn’t be able to work or drive if/when things got worse and how to prepare myself mentally when feeling like a financial burden on my husband (although he assures me I’m not, it’s how I feel inside). I wish I was prepared for my independence to be taken away without choice!

And I just wish I knew what life would be like, I wish I savoured every moment before becoming ill more, before it was taken away so suddenly!

Doctors seem to just diagnose and expect us to know what will come or do the research ourselves (which then they ridicule us for) or think that due to the symptoms we first have we know how life will be already! Most illnesses generally progress from how they began at the start! I know mine has especially more so since having new symptoms and then new conditions. No one states, “watch out for….. as these are symptoms of conditions that may happen due to having……” we aren’t warned things will get worse before they get better (if they get better)

No one asks about the mental health of people living with chronic illnesses and daily pain! Why? Don’t we need it most? Most are too shamed to speak up, it should be regularly offered!

Doctors need to take their time, explain conditions upon diagnosis, explain what is to come or what could come up/warning signs for other pre disposed conditions, how to deal with it, who to turn to, and give support throughout!

Our medical world needs an upgrade! It needs compassion and it needs understanding!

THE ISOLATION FROM CHRONIC ILLNESS

One of the many parts of living with a chronic illness, is the isolation. Although it’s not something we want, it’s just another thing this wicked illness does to us, it takes away our energy, our strength and our health when we need it most. Plans made weeks in advance end up canceled as we can barely get out of bed let alone get all showered and dressed up, we don’t have the energy to fake the smile and good health that we look on the outer to others. We get the reputation of being a bad friend, when friendship is all we want, we want the outings, nights out our bodies just don’t agree.

The more we cancel, the more friends we risk losing but it is a test to see who is a true friend and who is only with you during the good not the bad.

The days are lonely and hard to fill as being productive is hard and outings seem nearly impossible. Netflix becomes a friend and you keep up with your friends via Facebook. You find yourself wanting more in life and feeling more and more isolated each day. So very much experienced in this area I felt like I would put together a list of ways to be less isolated whilst not putting yourself under strain.

  1. Phone calls with your friends 3-4 times a week
  2. Skype chats so you can stay more up to date with friends and family (more personal touch & seeing others faces will help you feel less alone)
  3. PJ parties/movie nights at home! No dinner prep needed just put some pop corn in the microwave. Little energy needed, if your already watching Netflix make it a group activity!
  4. Online games with chat. Keep your mind active whilst socializing online, make resting up more fun too!
  5. Enjoy each moment with friends and family, savor each moment so it lasts till your up to the next! Take photos & videos to remember each moment.
  6. Take vitamins and supplements to help give you more energy so you can have more time with friends
  7. Use a walking aid to help get out of the house for small outings at a time.
  8. Engage a councilor, this one is not so easy for most to open up to but rest assured having someone to talk to about everything in your life will help you. It will give you an outlet for when your down. This will help your friendships thrive if we don’t lay ALL our negatives on our friends, as this can way them down over time. I’m not saying don’t tell your friends how your feeling, just don’t ONLY give them the negatives. A councilor will help you find the positives to talk about too. Keep conversations balanced!

I hope this helps and if you have any other tips to share please leave a comment below!

The “It’s just stress” go to diagnosis for incompetent doctors & the effect on the patients.

As the title states I want this blog to be something most of you can relate to when going through medical investigations whilst trying to get a diagnosis, or even seeing a new Doctor who doesn’t “believe” your diagnosis.

The way it makes us all feel is just wrong! This is something that needs to change!

I’m writing this as this is something I am currently experiencing whilst in the process of trying to figure out what my body is doing. After 3 days in hospital with intense abdominal cramping, vomiting and non epilepsy seizures(that’s as far as we’ve gotten with that diagnosis is ruling out what it’s not!)….The neurologist had finally arrived to see me, I had seen him once before and he seemed like he was going to be great, but when he came to see me in hospital he was the rudest by far. He couldn’t believe they had me on oxygen or that I would be in hospital for such thing! After completing the 2nd EEG he had ruled out epilepsy…in which my former specialist had already done and had already given him a letter requesting further testing as she believes I have a build up of pressure around the brain. Now you would think a fully qualified neurologist would know that epilepsy isn’t the only cause of seizure activity, I’ve done only a few months of research and know that, however he continued to give me the “Its caused from stress and it’s in your head ” speech that most doctors turn too when they are out of their depth!

I was in shock! I didn’t fight back, I didn’t ask many questions, I was just devastated… I had my hopes up that this great doctor I seen last time was finally going to be seeing how bad my condition has gotten, from 1 every second day, to daily and now 2-4 seizures a day! I was looking forward to him coming and treating me as an inpatient so I wasn’t alone all day whilst having seizures risking my safety at home and that he would be able to test to get answers and treatments…… All that hope and desperation was just gone!!! I was just silent, no words to describe how I felt, besides belittled and infuriated!!! I had put my trust in him only to be disappointed in the biggest way possible. I was discharged with no answer other than stress and no treatment besides “go talk to a Councillor until I can review you in a few months” and feeling like I would never get answers. That I would have to keep living like this with no hope, as he is the only neurologist in the area.

This feeling we get is so wrong, feeling like there’s no hope or that we won’t get answers needs to stop, we need to stop feeling embarrassed because that’s how the doctor who we trusted should be feeling not us! We shouldn’t feel shocked as it happens so often. I’ve had it happen multiple times and been strong but in that moment I lost that strength and lost my conviction to do what was right for me. Shortly after he left I regained my strength and called on my doctors and nurses for direction and their opinions, they too after seeing my seizures first hand all knew he was wrong and told me to see my GP to organize further testing and a second opinion from the nearest city.

I then got my determination and hope back, I realized we need to take back control!

We all need to fight back, to put our foot down, question their reasoning and to be our own advocate! We know our bodies better than they do, not everything will be a “text book case”, we need to do research ourselves, not feel ashamed, as we know they are wrong! I had to do so when I was covered in hives daily and no doctors would listen, I kept getting told “just take an antihistamine and calamine lotion” or that “it was an allergy” It took me seeing 7 different doctors dismissing my pain, constant itching and impacting my life for me to do enough research which took 3 months to then contact a London based doctor who wrote most of the research I could find on Auto immune urticaria, I emailed him back and forth and he emailed me all the tests my doctor needed to do. Out of the 7 doctors, I seen the one I knew who would run tests for me as she was just apologetic for not knowing what it was instead of belittling me. Thankfully I was right and the test result came back positive! Now yet again faced with the issues of these seizures, I seen another GP to organize some further testing and a second opinion after my hospital visit, after once again being belittled for questioning a neurologist who he automatically defended, without listening to me whatsoever and lecturing me on how little I know and how many years both the neurologist and himself had to study and train for. I decided once again that I was not going to let an incompetent doctor stand in my way of further testing, so I argued back to the point I was in tears, even though he kept dismissing my ideas, and even the letter with results from my previous good specialist (unfortunately we moved or I would still be under her care), plus him pulling my husband away whilst I was having an seizure to tell him it’s just stress and he needs to make me understand that! After all the fighting I got through to him well enough that he has organised the MRI I need to give me answers even though it was only to shut me up and said it’s a waste of my money… In which I replied, I will take my chances and if we do all further tests to no result only then will I accept it’s stress that’s causing it as it isn’t a coincidence it started after a brutal massage with neck manipulation and that I can even bring on a seizure from simply looking up or pressing a certain part in my neck (he didn’t want to hear a bar of it). He even suggested that I should just go back to my previous specialist which I ended up sending her an email and will have her CC’d in on my results. But in the end, I won because I stood up and fought for further testing and hope it will show him that I like many others aren’t textbook and need to be heard, listened to, acknowledged and shown compassion!!! I hope I help him to become a better Doctor so he can save more lives, through doing those simple things!

Although the illnesses we are dealing with already make us feel weak we need to find the strength to fight back, teach the doctors that not all of us are text book cases, that they don’t know EVERYTHING, that they need to listen and show compassion instead of arrogance! We need to stop feeling ashamed, belittled and wrong because that’s how they should be feeling for mistreating us.. their patients!

I am not in anyway stating stress isn’t a cause for some illnesses and it is most definitely a trigger in almost all illnesses in which the two should never be confused! But until all other testing is done to rule out everything else it should never be the “go to” diagnosis for doctors, that is just lazy and incompetent and could cost so many people their lives via misdiagnosis and suicides. I hear too many stories of others waiting years for a diagnosis, not wanting to go to the doctors due to how it makes them feel shamed, too many peoples lives on hold because they can’t do what they used to but have no answers… And too many people that give up on life as they don’t feel like they can go on living in daily pain with no answers! This needs to stop, and I hope it stops here because we stop feeling the shame and belittlement and start fighting for our rights, start teaching these doctors one by one that they HAVE to listen to do their jobs RIGHT! I’m hoping I can help you to find the strength you need to do so, because this world won’t change, this cycle won’t change until we all do our part! So let us all start fighting for change, fight to be heard and treated as human beings!

As always I’m here for all of my readers and would love to hear your thoughts and your stories and help you in any way I can. So please feel free to contact me if you are in need of any help or advice, anytime!

#ItsJustStress #Changingtheworld #IncompetentDoctors #TeachingCompassion #InvisibleButStrong

TRYING TO CONCEIVE WITH INVISIBLE ILLNESS

Welcome to my blog about my journey so far with trying to conceive with invisible/chronic illnesses….

My journey started 4 years ago after we got married, I was SOOOOO EXCITED to finally start trying for a baby, a baby I’ve wanted for so long but had decided to hold off trying for until we were married and in more of a financial position. At long last we were FINALLY going to have a baby soon.. well at least that’s what I had thought…

I previously fell pregnant when I was younger several times with my ex but all had ended unfortunately but I was young and it had taken it as it just wasn’t meant to be and he wasn’t the nicest guy so I had told myself I had miscarried for a reason and that this time would be different as I was older, financially stable and married o the love of my life who is the sweetest person you could imagine. Unfortunately things weren’t as I hoped.

I was in my late 20’s but had discovered I have endometriosis a few years prior so once again I had yet another laparoscopy as the first few months of trying nothing had come from it. I really hope I never have to have another laparoscopy as the 1st one in 2013 it had spread throughout my organs, which I had no idea it could do and due to complications I was on bed rest for 12 weeks and gained so much weight and lost my metabolism so had to say goodbye to being my old 58kg size 8 perfect body as I was now a size 12 with 5 horrible scars and couldn’t lose the weight regardless of what I tried. My next surgery in 2016 was better besides the medical staff issues… I woke up after I had my surgery and was told by my Fertility specialist/surgeon that my tubes were clear, all endo was removed and that we were just now waiting on biopsy results from what was removed, unfortunately for me he then went on holidays for several weeks without doing his paperwork and which meant no medicare refund until he returned (which wasn’t the issue) but he wrote in his entry that no Endo was found or removed??? I couldn’t believe it when I had my next appointment and he had said that, I was roppible that all was forgotten, did he remove what he had previously seen and shown me on scans? The chocolate cysts were they gone? Did he write about the wrong patient? So I made a complaint and changed fertility specialists as anyone would do!

At this point we were now at the 6 month mark with no positive pregnancy test, so we decided to try getting some help, firstly with just the fertility specialist monitoring my bloods every second day along with those horrible internal ultrasounds to check when I was going to ovulate so we new when to “try..” after a few unsuccessful months we then tried medication to assist… hormones!!! Clomid was the first point of call to help create more “targets” for the sperm (great analogy from the fertility specialist) for those of you who have taken Clomid my heart goes out to you!

Clomid, whist it did it’s job of creating 2-3 targets a month for the 8 months we had tried it all up, I have to say the side effects were horrendous! Talk about bloating, cramping, headaches, nausea, becoming a hormonal witch to my poor husband, food cravings and aversions… the amount of months the side effects made me believe I had to be pregnant was probably the hardest when finding out I wasn’t , it broke my heart each month, I was putting my body through all this and yet nothing!! There was a month that I was even late, ended in a heavy cycle to the point they thought I may of had a chemical pregnancy but no positive test to confirm either way only negatives. The side effects were crazy as not only did it give me side effects, it made all my daily symptoms worse!! talk about having a constant flare up, it’s an understatement!

After so much heart ache we decided to try IUI’s or more commonly known as artificial insemination, This also meant more hormones then previously! I was having to inject myself daily with GONAL F to help get more “targets” and then inject myself in the stomach once again with HCG to trigger ovulation. I have such a fear of needles this was horrible to do, I did get my husband to do it but it seemed to hurt moreso so I stood up to the plate and did it myself, unfortunately no luck yet again! More heart break, break downs and nights of endless tears, I lost all hope. I was feeling horrible from both side effects and symptoms flared beyond belief.. I was a mess, all of these things going wrong whilst still working 12 hours a day, 6 days a week. So we decided to take a break!

Once again we tried naturally once we were ready, but nothing again, so we decided to do one last round of IUI, my specialist was on holiday so I had another lady stand in instead and she tried a different combination by adding a progesterone pesserie to the mix of all other hormones the same as last. This month was by far the worst month of them all, the side effects, the horrific cramps, the works!!!!! I was a week late though and had my hopes up like crazy, I had never been this late before, I thought it all must be worth it, but the tests kept coming up negative until it was without a doubt another unsuccessful month. I was broken, shattered into pieces and decided to no longer focus on trying for a baby and throw myself back into work instead!

This was June last year 2019 that I had given up hope and decided to focus on life instead of on creating a new little life. Little did I know the impact the fertility medication had done to my body, 2 weeks later I ended up with severe chest pains and was short of breath. With my hate of doctors and hospitals I had just planned on going home and sleeping it off. It was 5:30pm so the day was almost finished anyway but my fellow workmates could see how pale I was and how much pain I was in so insisted I was to go to the Doctors across the road. So reluctantly I did, my heart rate was at 140bpm whilst sitting, my oxygen very low at 92%, baffled and worried my doctor ended up calling an ambulance.

After a weekend in hospital and sooo much blood taken, they couldn’t figure out what was wrong with me, my stats were fine … because i was lying in a bed! They released me on the Sunday and after doing some research I found POTS suited all my symptoms and as I couldn’t even walk or stand without falling from the dizziness and shortness of breath but was fine when laying down.I went back to the doctors who did some more tests to find I was right! As POTS is more common in teenagers, pregnant women and those going through menopause, the hormones must of been the trigger, after running a bunch of tests we also discovered I had Coeliac disease (Thankfully only early signs of damage during the colonoscopy & Endoscopy were found along with a polyp that was removed) and a name finally put to another condition I’ve always had which was Hypermobility syndrome. So now I know why I can dislocate joints easily!

Unfortunately due to all the heath issues added on to previous health issues the Doctors have stated that I can no longer use hormones to assist. Well not until they can get the current conditions under control at least…. Which seems to be taking forever!

Fast forward to December 2019, after only trying naturally again after a short break not focusing on ovulation (just taking it as it comes) whilst we finished renovating and sold our house, moved interstate and I finished up work due to more added heath concerns of seizures, we decided we needed a break and went on a cruise!!! Only a short holiday but it fell during the time of ovulation, on the cruise we had a couples massage, I tried fertility accupuncture for the first time (never before due to the fear of needles), I corrected my posture from a health seminar on the cruise which helped my sciatica and knee pain, I was relaxed, I even tried a month of fertility meditation and visualisation. This month I got my first faint POSITIVE pregnancy test!!

I wasn’t surprised as I felt like I just “was” since 3 days past ovulation I had feelings I had never had before, burning nipples daily, vivid crazy dreams, sore tender breasts to the point of having to wear a bra to bed each night, cramping mostly one sided but towards the end it started on both sides, I had cravings for milky drinks… banana smoothies, teas, chocolate milk and yet the smell of food made me dry reach!! This was it I just knew it!!

Fast forward to now, I have booked a doctors appointment but cant get in until next week, after being late and a faint positive I ended up bleeding once again, huge clots like never before, intense cramping 3 days prior to the bleeding which is still hurting but not as bad thankfully. 2 days of heavy bleeding followed by 3 days of spotting on and off. Too scared to take another test, I have read stories of those who lost one baby and not the other, those who experienced the same symptoms and yet continued on full term after believing they had lost it, and those who unfortunately did lose their little one and miscarried 😦 I sit here not knowing as I write this whilst awaiting a scan!

Whilst I believe all stories must have a happy ending, although unknown at this point, I chose to believe that this is a happy ending in the way of I DID CONCEIVE AT LAST!!! With no hormones, just us! I really hope there is a little fighter still holding on inside, I had so many dreams of twins and I myself was a twin but my mum had miscarried and thought she had lost her baby and then later found out I was there and it was my twin she had lost. So until the scan I hold onto hope. Each day is still hard, each time I have a seizure I wonder if that’s effecting my chance of having a healthy baby or is part of the reason I have issues conceiving now, I’m so short of breath when upright I cant run or go for walks to lose weight. There are so many factors and stresses and heart break in my mind, but for now…. I choose to be strong, I choose to be positive, I choose to hold onto hope for now! Whatever the outcome, this whole journey has made me strong!

#Invisiblebutstrong #NeverGiveUp #NeverLoseHope #TryingToConceive #TTC