I have had several people ask me questions lately about what it is that I go through now. What are the symptoms I speak of? What is the illness really? Why do I speak more details about what I have gone through then what I currently go through? So, I decided to write this. This will give you insight to my illness and my fears, my every day life and how I get through.
Let’s start with the illness itself. The easy name is Addison’s Secondary Disease (not to be confused with Addison’s Primary Disease or Addison’s). This is when there is a tumor on or in one of the glands in the brain, mine is on the Hypothalamus. To make it easy, things start here…hormones and vitamins and things that control sleep, thirst, hunger, fatigue, and so on. Then they release and follow the system down to the Pituitary Gland where they turn into something else you need, then release and travel down to your Adrenal Glands where they turn into something else your body needs and releases it all into your body. Along this path is where you get your Vitamin B12, Iron, Cortisol (Which is the main thing you need in order to live), ACTH, DHEA, FSH, LH, Progesterone, Estrogen, etc…all hormones your body needs in order to function and survive. Unfortunately, because of the location of my tumor, it prevents any of these things forming in the first place and nothing can pass by and travel down this system so I need to replace all of these things and am being kept alive by taking Cortisol and replacing the other things on a daily basis. Because of this, the symptoms in which I experience are great and I’ve been told will simply continue to get worse (not that I believe always what others say, because I believe in my heart that some day I will be cured of this and it will be something no one will be able to explain 🙂 )
Symptoms…they started with a handful and have continued to multiply as time has gone by. It has been 3 years now living with this but I can probably tell you dates of when all of the symptoms started taking place. In any case, my symptoms started out as extreme fatigue (I slept more than a new born baby), issues going to the washroom, extreme headaches, salty cravings, memory retention of about 30 seconds to 3 minutes where my short term memory was gone, chocolate cravings, and incredible leg pain. Over the past 3 years they developed and progressed. They gave me medicine to help with my memory so it’s not near as bad anymore (but still not great…well not great for others because I simply don’t know what I forgot so life for me is great 🙂 ), the leg pain has worsened and somedays I have troubles walking and typically cry myself to sleep 3-4 times a week because of the pain. I get visions of people or kids dying, my kids, or others, in a horrific way…it’s like having a nightmare when you’re awake that leaves you paralyzed (and it all depends on how the tumor is laying.) Sometimes, I see things and believe things that aren’t true…things about family or my husband and I have to tell myself “I’m being crazy” and not listen to those thoughts. I often get very sad for no reason at all and I can’t tell you why I am even crying. I now have problems with weight gain and my thyroid bounces between each end of the scale regularly, my sugar levels drop and increase frequently, my tongue is constantly swollen, although my body is fatigued and I suffer from exhaustion I now have problems sleeping, and my headaches have gotten less frequent but more severe when I get them. More recently we discovered through a very rough time of not being able to breathe very well (and still currently although better so if you see me or you are speaking with me and you see me take “weird” like breaths it because I simply can’t get enough air.) and troubles eating that my esophagus is not working properly as the muscles are always flexed so food and air have problems passing and although the cause is the lack of proper vitamins and nutrients as my body doesn’t produce them, the medicine I need I can not take because of the illness. Because of the medicines, my stomach can not digest things very well and I have an issue with acid..to the point where even the back of my throat is burned. They also found a Hiatal Hernia due to all of the physical stress my body is under. These are the majority, although not all, of my symptoms. I try to take only natural “medicines” but it’s not always possible. So to keep me alive and keep me going on a daily basis I currently take a minimum of 6 things, a combination of natural and western medicine (depends on the day and the symptoms as sometimes it’s a lot more than 6) multiple times per day throughout the day, which is better than the 11 I was on only 2 months ago.
And now for the reason I don’t talk about it as much. Well, I never really thought about it but the truth, as I think about it and as I said I would expose myself, is the feeling of not having control. See when I had cancer, or the house fire, or the death of my best friend I simply made the decision to overcome. The decision to live. I believe that having that mindset and NEVER giving in or giving up or loosing hope but staying Mind Strong is when you can win and overcome. The thing I face today is, I’m not always in control of my thoughts anymore, sometimes the illness is. Those times when it makes me believe things that aren’t true or to see things that aren’t really happening (even though it typically only lasts a minute or two), I’m not in full control. It’s probably the first time in my life that I don’t feel like I have the power, the control, I need in order to overcome and be 100% sure I will. I won’t lie, it’s scary at times. I cry in my husbands arms because not only am I tired of being sick but I am afraid. BUT here’s what I do and what I have come to realize…the way I need to live. See I can be weak and afraid BUT I CAN NEVER GIVE UP! It’s ok to have those moments of weakness and cry, but it’s not ok to give up. It’s never ok to give in and allow this illness to control me or what I do or what I accomplish. It won’t control how good of a wife or mother I can be. I can’t let it determine how or when my life will end.
Because I have My Hero Within and she is strong, I KNOW with certainty that I will win. That when it’s my time, no matter when that is, I will have been the best I could have been in every aspect of my life and I will have simply lived and it will be on my terms and not the illness’s!
The age old question…are things fate or coincidence? I have had many things in life happen that make you question. However, I do not believe in coincidence. I believe you are where you are suppose to be. I believe things happen the way they are suppose to happen. You tell me….
When a family member was diagnosed with brain cancer, the neurosurgeon said “Be grateful it’s not an Addison’s tumor. They are the most dangerous.” About 8 years later I walked in to the same surgeon and said “I have an Addison’s brain tumor.” After looking at all of the reports, he said he only knows of 2 others in the entire country (Canada) who has one as it is so rare. I said I know and asked if he remembered what he had said 8 years earlier to my family member. He just about fell over. He remembered telling my family that as he said he had never told anyone that in his life and he didn’t even know where it came from. He had never said it again. He said he had just looked at our family who seemed so desperate for some hope and that’s what he said. He thought it would give us some comfort and hope at the time and he could not believe that the one family he has ever said that too, that the same family would walk into his office and actually have this type of tumor as it is the most dangerous and rare tumor….. and yet now I have one……..Fate or coincidence?
As soon as we accept that we are where we are suppose to be and the things that are happening are suppose to be happening to us, we can be excited and enjoy life. Celebrate everything as it’s what makes you YOU!