IF YOU WERE STILL ALIVE

At the age of 30, sadly the day of, I found out my dad had cancer, a few weeks later I’d come to know it was late stage, and near my 31st birthday I was gifted the knowledge that his colon cancer would very soon take his life.

There is no way to downplay it, no looking for the good in it, the keep the memories alive BS or he lived a good life consolation prize.

But today as I reflect on all I am going through in my own life and health, I have this eerie thought it my head, DAD, what if you were still alive.

Although many of us think that same thought when we have lost a loved one, and how many times I’ve thought oh if you were alive you’d be so happy or even at times, disappointed, is countless.

Today I ask myself this very question and it’s a hard one to answer to myself.

As an only daughter, the first born of only two, I hurt watching my dad slowly fade out of my life.

I hurt for myself as his daughter, for my brother as his son, for my children and his future grandchildren.

But if he were alive today and had to watch his only daughter, first born of only two slowly fade away would his hurt be even more unbearable then mine was then?

Many times I cry out alone needing to hear his voice on the other end of the phone, to comfort me through all this.

At the same time I cry out alone for the universe to ease the pain my own children feel watching me fade away.

Which is more painful? I hope I never know, as I hope my children never know either.

I believe the agony of watching a child suffer trumps any pain in the world, physical or emotional. I know I can “take” anything thrown at me except watching my children suffer or worst, ever losing one.

If my dad were alive today, I truly believe all this would rip his heart apart.

He was a man who rarely cried (I remember him crying when nana passed and when he walked into the ER room after my accident and broke down) but he always worried about me with even the smallest of things even as I was well into adulthood, like the flu, and with my kidney problems, and then when panic attacks plagued me, he was by my side helping every chance he could.

If his pain would be anywhere near the pain I imagine I’d feel over my own children, I am glad he is not alive today.
The look on his face when he saw me nearly dead in that ER room is a look I carry with me for life, it’s a look I can’t say I’m Sorry for causing enough times, and it’s a look I never want to have come over my face with any of my children.

I had a Follow up Dr. appointment on the 11th of September, 6 months previous blood work revealed my iron transfusion did not work to put me into anemia remission, and this appointment was to check in and re run blood to see if I had plummeted below bare minimum to qualify for another transfusion, or so I thought.

I left the office with blood work for the iron, as well as to be tested for Lupus, as my symptoms pointed to it.

This was not the first time I had heard this, nor been tested for it, but it punched me in the gut all the same. I was also being tested for muscle damage and my blood sugars for diabetes. I almost wanted some of these tests to come back positive, because then I’d have answers as to why I am so severely anemic and feel like I am dying nearly every day.

I booked my blood for a week and a bit later, to give myself time to let it set in, and prepare myself for the worst. Also to allow my son’s 20th birthday to not be a date life’s events scarred as well.

I briefly told my oldest, while part of me wants to shelter them from it all, I remember how angry I was when dad kept things from me. He is the oldest as I was then and if need be he and my hubz can be the rocks the rest need.

Unfortunately my kids read my blog and this will the first time some will be aware of any of this once they read it here, also my close friends and family. I’ve become seclusive with all of this recently, I think I am just tired of talking about it, so I write it down, throw it out there and retreat again.

My blog while mostly fun and up beat has inserts like these, as the years pass I want to look back and see how far I have come, hopefully. At best it is a foot print in my life for my children to look back on.

If anyone reading it can relate and reach out to me or vice versa, posts like today’s are well worth it.

 

 

My blood work is back today, I get it online which is a blessing and a curse, every time I have it drawn I am up all night checking for the results.

Test for Lupus -negative

Blood Sugars- in the at risk zone, but I can’t even begin to worry about this, I don’t smoke or drink often, even though I am not perfect, I eat healthier then most.

sugars

Iron 3 yes THREE not 30     ( Canadian values for “normal” are 5 to 272, optimal is 90  this is as of the past year before that the lowest value was 10)

My blood values were also analyzed and right down the board they are mostly below range, this time around my report has been stamped with a features of iron deficiency anemia by the pathologist. I have suffered from low iron for years ( near 5) and my hemoglobin has be on the lower side as has the other values but never below range, 100% never this many below range at the same time and my ferritin never this low, lowest has been 9. I am waiting on a call from the doctor, I don’t know what this means but I am scared, frustrated, and depressed at this point with it all.

My B12 has slowly crept its way down over the last few years as well, it is still well above minimum, but also far from optimal.

My son advised me to stay off google, as I have no idea what things like few eliptocytes and ovalocytes,  slight hypochromasia, moderate microcytosis, or increased polychromasia are and have been searching it all night and day. From my understanding it is the colour and shape of my blood cells, not normal over all.

 

blood count

stamp

iron

Thyroid -within range ( thankfully a few years ago when my meds where increased for a fourth time I have been able to maintain with in range and even optimal values)

 

As for the Muscle Testing, no surprise there, I have muscle “damage”, “wasting”, if you ever witness me trying to climb a set of small stairs or trying to get up off a couch or bed these days you would equate it to the sight of a senior citizen or very over weight person ( which I am neither of) trying to do so.

Now to figure out if the anemia mixed with Hashimotos, fibromyalgia and being an amputee is the recipe that lead to me being less active and with the muscle damage, or is it a separate issue or the inability to move a symptom of something else causing damage to my muscles.

After seeing 5 different doctors during this journey ( not my choice, they treat me and and when they see no improvement refer me to another), I don’t think I will ever get the answer, from some of the doctors and my own education on it all I believe once you suffer from an auto immune disorder it snow balls from there!

 

muscle 2

muscle1

 

I jotted these thoughts down the day of my appointment and the days that followed, sitting here today publishing it I am left thinking, if you were alive today, you would not be the angel I’ve needed during these tough times.

Someone,possibly someone plural, is watching over me, all I am dealing with physically and emotionally would not be “humanly” possible “alone”. Even though I want answers and these test results have spun me down the rabbit hole of uncertainty and sadness, I am grateful it is not worse.

Now I sit and wait to hear from my current doctors and see where we go from here.

Thanks for reading through my ramblings. My hubz said something to me today that for a second lifted me up, I am stubborn and so strong, many would have given up or just laid around “lazy”

My son too said mom you still get things done, while maybe not the same and not easy you still continue to “live”

I don’t want to disappoint any of them or myself, so I push myself, I just honestly don’t know when my physical self will win over my mental self, one day all my “strength” just wont be enough.

 

8 comments

  1. Oh my gosh, this is all scary. I hope you start getting answers soon and someone is able to help you figure this all out. It is hard to loose the ones that were strong when you are weak, but they are watching from above I believe. Hope you get better soon. Oh and listen to your son, stay off Google, it will only freak you out.

    Liked by 1 person

    • I stepped away from the google a few hours ago. But sometimes I feel we need to be our own advocates and also feel so helpless that ai grasp at whatever i can for answers and comfort. Thanks for reading

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  2. Poor sweet friend. Hugs & 💖’s. I totally understand and can relate on so many levels.
    Watching my mother in law waste away and pass from cancer at 42 was terribly difficult but watching her mother go through the witnessing of it and losing her child was far more so. I too shut down when going through difficult times and like you, I grow tired of having to talk about it. The not knowing is far worse than bad news. I get that too. At least, when you know, the mystery and wondering are over and there’s a clear path and ability for action. I’m so sorry friend that you are going through this. I pray for an answer for you.
    How strange this life is. My brother suffers the exact opposite. He has hereditary hemochromatosis. It’s what his grandmother passed away from.

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  3. Thank you, 42 wow! I am 43 i can not imagine a my parents have to lose me even at that age nor my children. I had to google the condition your brother has. Wow! The body and life is such a mystery. I am hoping for answers or a break through in a treatment that even half works

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  4. I’m so sorry for your loss of your dad. Cancer is awful. And you make a great point. I don’t how my mom would have internalized my illnesses. As a chronic illness warrior herself I think we would have just felt comfort in knowing we weren’t alone. I can’t be sure though.

    I’m so sorry to hear about your labs. So frustrating. I’ve been there, and am currently putting black strap molasses in my oatmeal as well as drinking organic bone broth daily, as well as taking sublingual iron. Labs next week, fingers crossed. I’m sincerely hoping your body begins to respond to some form of treatment. My homeopath said the body can adjust to some level of anemia. I don’t know if that’s true, but hopefully it is. Sending you hugs 💕

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    • I am sorry that both you and your mom suffered. My family doctor is worried my kids may follow mom as I have some odd issues and was really young, he has insisted they kids get tested routinely but even the 2 oldest are yet to have blood work. I just pray this wont be inherited.
      My doctors started to worry when I was in the 30s for iron ( the blood counts then were all in range) they began to panic in the 20s and in the teens and just below minimum they shuffled me to new doctors for help, even my natropath.
      Here i sit at pretty near zero traces of iron in my blood and not in range blood counts, the time to adjust for me has long gone, this summer my mind caved and decided no more adjusting and no more giving up even more, but I had my break down, dusted myself off and “lived”
      whats the alternative? until I get answers and some kind of half treatment I think emotionally I am depleted as I am physically but I’ll keep trying until I have no choice

      Liked by 1 person

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