Sunday, October 22, 2017

The Difference Between A Blood level Ferritin of 2 to A Ferritin Level of 9. Envy, Gratitude, Friendships and the Surprising Benefits of LOW energy.

*In this post I speak about Ferritin which is different from standard Anemia of low Hemoglobin. Do a quick google search if you are looking for more information on this key definition.*

The difference between a Ferritin of 2 and 9 feels like being on the cusp of death and finally being able to begin to LIVE. (I will get into the actual medical details for any fellow sufferers later.) The operative word is 'begin.' I'm still struggling with many issues YET for the first time in months I feel a dangerous hope. To help people who have never struggled with Anemia or low Ferritin understand, here is the difference between a few tiny numbers of the stored Iron (Ferritin which is different from Hemoglobin numbers) in the body's blood system and what it can mean on a personal, outward level;

*I have begun to read again. I wasn't able to tolerate more than a few books a year (I have always been a voracious reader and was often able to gobble down at least four books a week. At least.) I remember my Ferritin getting to a 5 before. That year I was also able to read a few more books. I can also now read out loud a full chapter to my children without being drained or gasping for breath! When I am their teacher this is an incredible feat, and I have had to find creative ways of teaching the last two years and relying on other people. But now I am slowly getting back into reading. I can't do it regularly yet but I am beginning again. I treasure this! (My daughter snapped the picture above because she walked in with her ipad and called it a "Pinterest moment" after she captured it. I am so grateful to her because I felt frumpy and yucky and didn't want her to take a photo of me make-up less but looking at it from her perspective it truly was a beautiful moment I can now have to look at - and I LOVE how our moment was captured through her lens.)

*I borrowed a Treadmill from my parents and I can actually sustain a mild pace of walking for a forty minute episode of Glee. This feels like a HUGE feat. Before I could only walk fifteen minutes and had to lie down for an hour to recover. Before I felt like one more step and I could die. Possibly. For real. It was a dramatic feeling. At a Ferritin of 9, the mild treadmill pace ( I only average 2.5- 3.7 miles per hour) still feels quite fast and it DOES take it out of me, but it's a start. I feel accomplished. Moving around also helps in other ways and I feel honoured that I am finally able to take these literal steps.

*I feel I have a little more time for friends. Not much- but I do think I am initiating slightly more or thinking of others with small gifts or notes when I am able. I thought my Introversion was simply reaching epic levels. I was slightly worried for myself- not much- but a little on what it means to have no desire for anyone- even if I love them. Turns out the Ferritin has A LOT to do with this. Apparently, the Specialist says that I can not judge what my healthy normal is until I reach SEVENTY. Will I still be a hermit? Who knows. It's been a decade of declining levels. I will always be attracted to Hermit status, however, my tolerance for even the people I love was/is so so low. At a two, breathing was enough output for the day. Having to use words beyond speaking to my kids was exhausting. Texting often hurt. I hung on to my small Instagram like a lifeline and posted on there, because I could hit a core group of people I cared about with intimate details, in one go...It was my support and desperately needed...which brings me to my next point...

*I quit Instagram three days ago. My Ferritin reaching a 9 enabled me to form new habits and have the oxygen in my brain to implement. I knew something was different so asked my family doctor to do early blood work. I found out last night that it had increased to a 9. Which in hindsight explains a lot. Last week I made quite a few changes and I know this is not coincidence. I felt I needed a break from social media to figure out my new life choices, to get into new habits and because I was starting to feel frustrated with it. I go with my gut on these feelings. I allow myself to be flaky on certain aspects of life because as an INFJ I will often take the responsible, strict route. I may go back to Instagram eventually, or start fresh, or maybe I never will again, but I needed to take a break. I cried actually. It was hard. I still go to press the App ALL THE TIME. I think about what I could share or who would appreciate certain glimpses of my life. But then again, I have also had more time to recover, to process, and to give to new habits.

*I am eating LESS. Yup you heard right. For the last few months I was eating more than I ever did before, which my best friend still says is piddly, but I was trying to get energy hits. Coming off of Mono (That with the low Ferritin was enough to make my year akin to the year and life of a Zombie) I ate more chips and quick carb choices I normally would not eat because I was desperate for any sort of energy hit. It never worked but gave me an illusion of control. I gained even more weight. Which CAN be an issue with Anemia and especially low ferritin due to energy levels but also the fact that the Mitochondria are not getting enough oxygen to burn fat. (Short version.) At a 9, I am noticing a slight change in my energy cravings. I have hope that if I ever pass 20 I will feel like Superwoman!

*I have a little less ADD symptoms. I have ADD anyway. I was diagnosed years ago. I don't think it's relevant and believe it's just a secondary part of Autism. Plus, I manage it well. I'm quite self controlled...but I was unable to focus on anything for more than a few minutes. I still am at Hummingbird status, but I can now sit through some of my shows and only multitask for half of them instead of for the full episode.

*My words are beginning to come back. I thought I was in the beginning of Dementia. I watched the flick "Still Alice" and could relate to everything but the random wetting. It scared me. Often the words I want in life don't come to me, due to my different wiring, but losing words has been on an entirely different level the last few years. I tell my children to wash their arms because I can not remember the word 'hands'...and I know they will get what I mean. They have adapted to my weird language. Even in writing, where I tend to thrive, I will have to sit and think of an alternative word to the one on the tips of my fingers. Or I will have to google, "That thing that happens when you can feel air coming into the nostrils." I feel a hiccup of "I KNOW this word" but it won't form. For anyone curious about the result, the word was 'breathing.' I don't even have the right description in these moments and am amazed google tends to give me what I need regardless. This still happens to me regularly but I have noticed a tiny decrease in my need for translations.

* Every day no longer feels like Ground- hog day. For a year it felt like each day bled into the same day all over again. Even if I KNEW my life was beautiful and good, I could not shake this feeling. My husband told me he felt like that up until two months ago due to mono and his Mono began this time last year. Mine was diagnosed in that sounds about right. Maybe this was a lack of Mono effects and not Ferritin improvement but it's worth a mention.

Brief Medical Background and Notes:

Since my youngest has been born (about a decade) my Ferritin has hovered around 3, often going down to 2, and sometimes going as high as 7...even with iron therapy. Awhile ago I saw an Internist whom was also a Hematologist. He was greatly alarmed at my "death like levels." His diagnosis of me was, "I think you have Fibromyalgia ( which isn't news as I was diagnosed with it twice in my early twenties) and if that lump in your neck you are ignoring- we will ignore too for now, because the most pressing issue for me is your Ferritin levels. I am surprised you have been functioning this long. I feel most of your symptoms come down to this. You should be on regular IV's and I will order the iron IV's after this appointment. If that doesn't work a blood transfusion. Most Doctors will say that Ferritin can range from as low as 12 to over a hundred. As a Hematologist who works with blood as my specialty I can tell you that we want you up to at least 70 and most people will not feel optimal until their Ferritin levels are well past this point. A goal for patients should be over fifty at the very very least. 12 is unacceptable. You are at a 2. I believe your issues of memory, lethargy, anger, gut and suffering of all general symptoms are increased by this low oxygen level inside of you." To which I replied, "That's validating and thank you. I have been told to do both the IV and blood transfusion before but am hesitant due to the side effects and my research- is there another alternative?" I don't think most doctors are fans of me...he finally consented to me going on a higher dosage of Ferramax (the type of expensive iron I tolerate best) for a trial of 2 months but if I did not show improvement I have to take the steps above without any choice.

I'm only 3.5 weeks in to my new regime and my Hemoglobin has raised from low into just the normal range and my Ferritin has gone from a 2 to a 9! NINE. I'm a little apprehensive to get excited about this because when I got to a seven before, despite valiant efforts it fell again to a 2. However, I am doing a few things differently this time. I am taking an absorption aid called BC-1 from my Naturopath under my tongue along with 'Medi C Vitamin C with L- Lysine formula." I admit the first two weeks I was "pregnancy sick."  I had a massive clawing in my gut, cramping and nausea all day long ( the worst being an hour after consumption.) I still deal with side effects but I am glad I stuck through the torture of adjustment. I still am not on the dosage that was recommended. I just can't tolerate it, but I am taking more iron on a schedule I can manage.

With my current levels I am no longer considered "Anemic"due to "normal" hemoglobin range yet because of my Ferritin levels, my Hematologist still considers me "in danger and serious." I no longer look at energetic people with envy. Because now I understand how they have energy. The difference from a 2 to 9 put this into perspective. It feels like when the Doctors put the oxygen nose tube on my face and that extra boost of relief in the very cells of my being. I know without a doubt, when people without chronic illness or health reasons, complain about being tired, it is not my level of tired. I can't imagine what a "normal tired day" will feel like, but I am looking forward to experiencing one. If my levels ever reach past seventy and my hair grows back and I can work out, I can guarantee I will feel like Wonder Woman. I finally see that there is a reason why I can't do what others do. Because if a jump of only 7 points has given me enough improvement to hope again, to walk, to wish to engage with those I love- imagine that multiplied by ten!!! I am no longer envious of normal people because they have a boost I don't. There is nothing I can do about that other than keep on the treatment I am and hope for the best.

About Struggles with Envy, Choices and Therapy;

My therapist and I had an excellent appointment the other day. Before I knew my Ferritin had gone up we were discussing my envy of energetic people who put whatever they wish to eat in their grocery cart and flit from one thing to the next. Or those women who have it all together and care about putting effort into their looks, plus do things for others, plus manage their families. I moaned, "I despise being envious. Normally I don't struggle with jealousy unless it involves my husband...I'm just not the type because I love my differences and my wonderland approach to life...but I KNOW it's a problem and I am angry at the luck of the draw in health that people who do not give much thought to life are healthy and happy. I don't wish to be that person. How can I stop being envious??!?" To which he replied with something akin to, "There are benefits and downsides to everything. You know, some parents end up sitting in the bleachers cheering on the game for their kids but do not have regular conversations on a deep level with their children. They think cheering them from afar in their chosen, individual activity is quality time. In a way it is. But it is not the same as what you do. It can not be compared. Because of your low energy level you have made integral choices for your children that have benefited them. You see your children 90 percent of their lives. You are always there to talk with them, you witness all their milestones and you teach them almost all they know. That is HUGE. That is also because of your low energy. Yes some years they learn less than other years due to your health, but do you think you would have chosen homeschooling if you hadn't run into energy issues to sustain all that formal school involved (the interactions with other parents/playdates/making lunches/pick up times/ drop offs/extracurriculars/homework...conformity- ha ha those were my words not my therapists) ? Your slower pace also keeps you from taking on too much and the stress levels involved with that. Many patients I have had over the years in their later ages who had high energy output with their families have different negative effects, varied diseases associated with stress, and regrets about their choices too. What you have to see is what you are capable of- and what benefits have come with that. Then the envy will melt away. You won't think of yourself as higher than these people either but instead see it as a range of choices and circumstances that can not be controlled ( like certain health conditions or different mind wiring) with downsides and upsides."

This resonated with me. When I found out last night that my Ferritin had improved enough to breathe easier, and it wasn't just an illusion, I realized the truth in this. Circumstances DO matter. Natural health plays a large role in choices. I can see now that "normal" levels of blood to me looked like Superhero women simply because it has been years since I have felt that. Actually, my Anemia started in grade six after menstruation and I have never had a Ferritin level of 70 that I can recall how it felt. Even if I do get a level of 70, I am STILL an INFJ and Autistic. Thus, I will never be a go getter in the social realm. Nor, will I make conventional choices. However, I will probably (hopefully) be able to follow through on choices that I WISH to make...a bit more time with people outside of my family, less crankiness due to depletion, more fun trips where I don't spend the time regretting the "fun" and faking it to make it, and more time to be active.

Thus far the benefits of having low Ferritin have involved:

*Knowing who my friends are. I know, by the responses, who actually fits into my life. If a person responded with, "Oh I have had Anemia and it's not that bad." Yet they had no idea what Ferritin levels were I knew that my case was being negated and it was time to move on to a better support system. Of course, I always give a chance for understanding, but if that wasn't acknowledged...

*With this, having friends who could accept my low energy output without pushing too much but still being available in my life. I know this is sort of unfair...but life is unfair and so is my condition. Thus I try to make it up to them in varied ways and I DEEPLY appreciate their willingness to see value in being in my life.

*Learning boundaries. I was forced into boundary learning in my mid twenties because of my Autistic brain, INFJ soul and my health. I think the health forced my hand more than any other difference. I will be forever grateful for the hard lessons involved but the massive life improvement on all other levels besides health.

*Making energy conservation choices. Even if/when I have "normal" energy/oxygen levels again, I think I will carry my values and lessons into not doing more, but sustaining quality in a few extras that life may give me.

*Compassion. I can not stress enough, how I have learned to sympathize with all chronic condition sufferers. For me there is hope that a large aspect of my health will get better even if I have two other chronic conditions. But having this low of energy helps me to understand others. I know it doesn't compare to terminal or massively deteriorating conditions, but it has given me a long lasting bitter taste of moments that feel similar on a lesser level. I can empathetically put myself in their place and know how a fragment of that life feels.

*Less Judgment. I know I have judged energetic people out of envy but I also know that I usually give people the benefit of the doubt. I have a personality type which my observations and life choices sound like judgment, but it's just me...and my best friend and husband will testify that I am one of the least judgmental people they know. I have a lot of grey areas which tend to bother people more than if I had extreme black and white. I am a natural perspective taker. Yet, this has been taken to EPIC levels due to my own circumstances. I now look behind the scenes even more. If my cells tell a story of exhaustion that can not be seen, what about everyone else? What about that energetic lady? Maybe she goes home to recover for hours just like I do? Often people think I am normal and smiling. I see my pictures. I look normal in them...happy, healthy, young ish, energetic...I take multiple selfies because this always baffles me. I want to see what the world sees and look at myself from that angle as well. So maybe, this applies to everyone on some level?

*No regrets. I had a family member say to me recently, "You will regret that decision. What about *insert anonymous child name here* and if you never see them again. You would never forgive yourself for the boundaries you set." This gave me no pause because I realized this person did not really know me on a deep level, if this is what they think. I may have short regrets and a few bigger ones but I do not wish for life to be any other way. I would not be the person I am today without those experiences. I am thankful for them. A lot of good came out of them too. I just can't work in black and white. They may be partial regrets but they are not encompassing feelings of depression. If it came down to never seeing that said child again, I would be upset and it WOULD be a loss. But I would be more worried about how it affected the child. I know I would adjust and be fine. I can love from afar easily...sometimes painfully and people can assume I have no love at all when I do. If I get a chance behind the scenes to make someones life better who is out of my life- I will take it. I would do all I could outside of that child's life to make it better, but if the chips fell that way, I wouldn't feel like I made the worst decision.

We all make decisions that have both good and bad. We also make them where we are at...without the information of the future. We must try to make the healthiest, best, most loving choices, but what that looks like for one person, may look like a horrid decision to someone else. I won't ever judge myself for making a decision in the past. It was what I did and what it was. Also, I believe in human frailty and the gifts of imperfection. I WILL make some choices that could have been better...we all do. However, we make what we do at the places we are at. There is grace for that. It seems ungraceful to the uneducated but actually think about the ripple effects involved with that sort of self acceptance and love. My ill health has caused me to have even less time to dwell on regrets or to wallow in the past. The past is gone for better or worse, and maybe in the future it will be redeemed in surprising ways? Right now is all I've got...

*Which brings me to my last point- Nothing brings home gratitude and making good life choices like the hovering of possible death or the threat of life declining fast. Every day I am reminded of what I have, what I have lost, and what I could gain. EVERY DAY. Every outing I am reminded of my mortality. Because being drained from low oxygen in every cell including the storage cells can feel like a slow drain of death. Like a balloon deflating. In each choice I make, I see quickly how it benefited my energy or drained it. Which makes me more careful about all the little choices. I have realized my children in organized sports ( they still experience the benefits of being active or part of a team in varied ways) is not a priority but time with them IS. I have realized what matters to me on small daily levels and what matters ultimately with my children. They may have a long healthy life or they could pass away in an untimely way- I want them and myself to know if that happened, that they owned every second and had valuable, connective, life choices. I feel deeply grateful for the days I CAN walk or go on a short outing without major recovery after. I feel grateful for the friends who understood on a deeper level and for the friends who may not have but supported me or spoke in my language despite this. For the space received and lack of judgment for needing it. For the many movies with friends because it is easier for me than speaking for hours. For deeper conversations when I am able and the ability to cancel when I am not. For small moments of connection and large times of witness. It ALL matters. What taught me some of my best life lessons were my "differences" and harder life moments. Chronic illness, being a minority in personality and a definite minority in brain wiring forced my hand in some ways and gentled it in others. I am beyond grateful even if I have had some tough, tough moments.

Life is still hard despite improving levels. I still have a lump in my thyroid I am currently ignoring, dental work that has been going on since August averaging three times a week ( that is getting to me but I am thankful for my team and have given them gratitude gifts because of their care), and other life circumstances that are not always easy. Yet with a few points in Ferritin, I feel like maybe there is hope to rise to these occasions with more fortitude. It makes a difference. It's amazing how one seemingly tiny factor in health can be the difference between healing and deterioration. I hope each person can find theirs, whether it is a vitamin deficiency or a tweak in diet, or some sort of blood discovery ect. Because getting help after ten years of suffering feels like a miracle. I don't know if it will last, but I am glad I kept fighting to be heard. I am relieved I wouldn't back down from my statements of "something is wrong here and it needs to be addressed." Keep fighting, keep Being,  or as Journey croons, "Don't stop believing.":)

*The song that best describes this journey is also mine and hubby's new song for the year. It describes us to a the point that I have a post that has been sitting in my drafts folder with all the lyrics and a tribute to him...if I ever get around to it. "It's kinda Complicated" by Scott Helman. My fav lyrics are, "There's a dictionary page dedicated to us. It says some days we're gonna shine, and some days we'll rust. But they left out the meaning, didn't give it a name. 'Cause they couldn't find a word for our kind of insane... And I overheard them saying that we got a disease. But I only got you, and you only got me. There's a moment when I'm smiling, and I'm shiny, and gold. Or a bad, bad feeling creeping in my bones. And I like it that way, 'cause I'm weak in the knees. But when it's not half-amazing, well, it kinda looks bleak...

Yeah, I only got you . And you only got me
I got from frustrated
To feeling liberated
(Oh, oh)
We're kinda complicated" Link HERE


Anonymous said...

Great to read and "catch up". What a journey!! It's pretty exciting to hear a thread of hope and light. Happy for you my friend. -D

Kmarie A. said...

D: Thank you! Yes those threads are always amazing. I hope many for you too:)

S said...

Thank you so much, Kmarie for writing this post. I have chronic illness from a very young age and the day I found your blog, it was a great relief and comfort for me. I can relate to almost everything that you have written here and believe me, in my real life , I have not met anyone who is going through similar issues and therefore, it was ( and still is ) difficult growing up and carrying on with life. The day I read your blog posts, you know what ? I received a great solace for my soul. I need your writing and your voice to feel less lonely in this world. In my real life, people either do not understand me or have not gone through similar issues, and therefore, sometimes reality hurts.
Thank you for sharing your health updates. It is a confusing and difficult journey. Depression can set in anytime. More so because it is a lonely and unique journey. Chronic illness changes our life. It makes us into something who we may not want to be in the first place. It is not our choice. It makes us lonely and misunderstood. We develop coping strategies only for ourselves and sometimes, we have to leave the whole world out. Again, it is not a choice and when something is not a choice or something we cannot choose, we feel helpless and angry.
It teaches us many new lessons along the way, lessons of boundaries and compassion, lessons of endurance and hope and of course of finding beauty even in the smallest day to day things ( that's why I want you to be in Instagram once again !!). Actually, our illness/ disability/personality makes us into who we are ( although we may not want to be that)- A very real person and with a unique perspective. People may judge us because of that, even we may judge ourselves because of that but at the end of the day, we have to accept our lowest lows and highest high. Just because we are "not able" in certain things/areas of our lives does not mean that we are not enough. Maybe not enough in the eyes of others, but to ourselves we belong completely because from a very young age we have learned to accept the extreme of both ability and disability, of both pleasure and pain. Going between these extremes have made us into what we are today, an unique individual who have experienced a wide range of emotions-negative,positive and also bland.
Healing for us is not only getting better or coping better but also "being" in our painful body, just being there, of course hoping for the best but being there and witnessing and enduring also without giving in to the judgment of others.
Sending love along your way,

Kmarie A. said...

you always make me so happy...that for days I walk around with a little smile and then realize I never wrote back! It happens every time- I am so satisfied with your comments that I close the browser happily replying in my head and then when thinking on it days later realize I didnt actually write you back! Thus my ALWAYS late response to you. You just make me that happy...:)

Thank you for the wonderful compliments of solidarity and encouragement. It is nice to have company like you in a unique journey of being a minority in body, spirit and mind. It is so nice to have such a beautiful presence speaking into my life and I am SO glad you found me. Yes depression can be real from feeling misunderstood which is why it is so good to understand ourselves. It does teach so many new lessons. I DEEPLY miss you on instagram and your regular feedback...But I am not ready to go back on yet just because I am finding time is opening up for me in other ways but lets continue to stay in contact please! Maybe you will start writing again too as your posts always calmed me:)
Ability and struggles to be 'enough' will always be a battle for most. It is hard...but you are right- we get an added layer of understanding and compassion.
I love your thoughts. very lovely.