Thursday, March 10, 2016

Ferritin, Anemia, Lyme's and Struggles

  • About the picture below: It does not match the post and yet it does...I took it on a day I was feeling better and wanted to remember that I can celebrate captured essence, seeing what my kids see, selfie, smile wrinkles (man they are getting deep!), dimples, lines, perspective, and because black and white is more forgiving.
    I was worried I had dementia. My memory has struggled to keep people's names, events and schedules organized. In the past I have struggled with memory due to executive functioning fails and also sensory overload triggering trauma which also erases memory. I have had memory loss due to hormone imbalance and insomnia but I had not experienced the level of memory struggle that the last six months have entailed. I brought it up to my doctor and therapist and apparently it is from lack of REM deep sleep as well as chronically low Ferritin.

Memory affects all areas of life. I was starting to feel depressed. I realized I was repeating conversations with people that seemed completely new to me. In the span of an hour I would ask my husband the same question five times. When he said I just asked him that five minutes ago, I could not recall ever mentioning anything or saying my own words. Struggling to communicate effectively and have the retention for important details is a crucial part of everyday life that I previously took for granted.

Recently, I had my first good sleep, thanks to my therapist's strategies. The following day I caught up on chores, chatting with four different friends, and visited with my grandparents. On the way home from grandma's house I started feeling edgy. My thoughts were mixed up and I could not explain how I was feeling. My husband checked in a bit and tried to get me to come into the present, but I just couldn't. My brain checked out. In the early morning hours, after he was finally asleep, I started coming back to myself. I felt horrid for being so out of it and I could not explain what happened. I had a good day after all. So I googled "burn out." It wasn't specific to my journey because I have a fairly commitment free and stress free life. I googled "physical burn out" instead but my life circumstances still did not match, so I typed in"physical exhaustion" and of course iron came up again. Anemia is my ever present health condition that I trivialize and forget how important it is to normal functioning.

Anemia is my "normal." I fluctuate in my levels and often it's just a fact of my life. Whenever I end up on a site that explains the dangers of it, the seriousness of chronic loss, and potential organ damage with low Ferritin, I am shocked. Every time. Which is baffling because I think I look it up about every three months when I am near the end of my rope again. Why does it shock me? 

A normal day for me consists of many breaks to lie down to catch my breath. I need about twenty minutes for every couple hours to re group and feel like my body can function again. If I don't take these breaks I start to feel nauseous, muscle tightness, out of breath, and slightly panicky. I don't think much of it until I have a busy day and have to skip my normal rhythm. If I am sitting down for hours I am wasted. I need to actually lie down for everything to function optimally. One would think that the seriousness of anemia would not shock me when my day has to be like that, but it does, because it's simply my life. My life is set up optimally for me to be "sick" or "chronically ill." I home school my children and my husband is the main provider. I also provide by applying for certain programs, tax rebates ect. but he is the one who goes out of the home everyday. I am lucky because I can be weird, odd and quite sick and it all goes under the radar. I can effectively school my children and on my horrid days they school themselves or take a break. They also are my chore support which I think will aid them in their adult days. They know how to do each chore. I do have to go over most of them, but they take the brunt of the exhaustive ones like mopping. I can't mop because if I do I feel desperate for oxygen. While I am a feline personality and can laze around comfortably for hours, I am not lazy. I LOVE cleaning my home on most days and I LOVE to do lists. I am not type A but I am not a slouch either. My bohemian ways enable me to be accomplished and able to BE. However, sometimes the health factor throws my rhythm off balance.

Truthfully, it's a roller coaster ride. Some days are "normal," some are awful and the rest are spent in a limbo land of fluctuation. It affects every area of my life but it gets redundant to think about it or talk about it with others because it has been YEARS of my life. Yet, there are some moments when it all catches up to me and I want the world to know about Anemia to prevent it in themselves and to give me the consideration I need to cope with life.

The Dementia like symptoms scared me because untreated Lyme can cause Dementia, Alzheimer's  ect...My Lyme is untreated. I can not afford the treatments and frankly, the Anemia is enough for me to deal with. I often pretend I don't have Lyme because what is the point of reading about it if I can't do anything about it at this time? It just scares me and makes me stressed. Plus, most of the treatments are not a guarantee so why go through the expense and the trauma if it's not going to pay off? Yet, research and various professionals have told me that Lyme may be what is causing my Anemia as well. If that is the case, I will always be in this struggle. I actually can not talk about Lyme disease or read about it. I declined a fellow Lymie's help and offer to share her journey with me. I just can't deal with it. I am pretending I don't have it...until some days I am in so much pain or have a typical Lyme attack and then I sort of have to face it but it sends me into panic so I fall back on denial. My husband even forgets I have it because it's not a topic that is welcomed in our home right now. Actually, I can't write about it anymore, back to Ferritin...

"Ferritin is an iron storage protein that the body synthesizes, FREE iron can be toxic to our organs. To prevent iron toxicity the body regulates the level of ferritin (synthesis) to accommodate different levels of iron. Ferritin is stored in the bone marrow and organs. Ferritin is used (called on) when the need for iron intake increases to build the Hgb so that you do not become anemic. When the iron stores are depleted, iron is then pulled from the organs, this is a more dangerous stage. When your total body iron is high ferritin is usually high, when total iron body is low, ferritin tends to be low as well. ~Iron deficient people~ tend to have a ferritin less than 10 whatever the bottom of your range is. My Hematologist says under 10, there is no iron remaining. The end stage of the ferritin stores is IDA iron deficiency anemia. So until the iron stored are used up you will not become anemic. Anemia MAY not show until your ferritin is 5 or below around this range anyway. It is different for each person." (taken from HERE

I have wondered lately why I have no energy for people or any desire to join in most activities. I don't care about most issues that I should care about. I don't care about my looks and it takes so much energy just to shower. By the time I get to my make up counter, eyeliner is enough of a feat. My thinning hair is often pulled into a nineties' messy bun and I usually wear what I wore to bed most days or grab something if I have to go out. On days when the sun is shinning I do both better and worse. I feel a little zest of energy but not enough to do much so then I feel contained. I want to go out sometimes. I want to care. I want to look pretty...but I don't want these things enough to actually do them. I am just too exhausted. My writing is less cohesive and creative at times (although that fluctuates too.) Some days, I feel like my brain is dying. Other days I feel like it's my body that will kick the bucket sooner than later. On all days I feel a tad annoyed that I feel that way at all. I know I am lucky. I am also very grateful for what I have and who I am.

It's a strange paradox. Chronic illness has taught me a lot about letting go, BEING and what makes me worthy. I am a stubborn person who fights for the good in everything. However, some days, like today, I just want to complain a bit...or say that frankly, it sucks. There are downsides...ha, even stating that makes me feel a bit guilty. I feel like I should be a better advocate for all those that struggle out there, providing hope and lessons to make it positive. I am that counsellor sort of type and to actually complain about it makes me cringe.

Here is my redemption for today...let me help you... because that is how I feel I can turn my situation and perspective around. Ferritin monitoring is an important indicator of health and one I did not know about until three years ago, even though I have a history of Anemia. When my blood levels go up over what's considered being Anemic but my Ferritin is only up at a six, my organs do not have the storage they need thus I need to stay on supplements. Hair growth and lack of exhaustion will not improve until I reach at least a 70 consecutively for six months (which does not seem hopeful considering that it took me a year to get from a 2 to 6.) During heavy menstruation years, ladies should have their iron and Ferritin checked. If you are struggling with exhaustion, hair loss, chest pain, dizziness, shortness of breath, organ dysfunction, paleness, cold limbs, ect. get checked. I hope I can save others from going undetected like I was for nine years! My ferritin has been less than 8 since my last baby was born but because I didn't have blood work for awhile and my iron hemoglobin didn't start dropping rapidly till a few years later it went untreated. A "normal" red blood cell count isn't enough. Please get regular bloodwork. Men can also be anemic but they tend to actually have iron overload (which is VERY serious) luckily simple blood donation can take care of most of that issue. I am also putting this out there for self understanding and for anyone else who is going through this. Check out my label on Anemia for more. There are better articles in my archives.

Thanks for letting me complain a bit. I hope to pass on some inspiration, quirky creative posts or something worthwhile in the future. For now, I am going to try to BE.

Song Choice: For some reason Amy Whinehouse's voice has really soothed me during this time. I watched her documentary and was both saddened and awed at her talent. She was off my radar because I was birthing kids at the time and out of the zone. This song makes me happy:

Also this song gives me a little burst of energy too. My children just watched the new Peanuts movie. I enjoyed the sweet innocence:

And even though it clearly does not sometimes feel spectacular to be alive ~ it's still good. I like being alive:) This song helps me with my gratitude list...


Quiet Contemplation said...

I'm sorry to hear that you've been having a hard time. It's such a coincidence, because I was just thinking about writing a post today about chronic illness. I still have not quite wrapped my head around how my life has changed, and how I need to do things differently due to a couple of new medical diagnosis that I've had this last year. Like you, I tend to find the good, and positive, but today was not easy to do that.

Thanks for sharing.I know your post will help others.

Kmarie said...

I am sorry that today you also struggled. Also sorry to hear about new medical diagnosis...a new journey is always hard to adjust to and overwhelming. Chronic has some beauty but pain and I feel for you.

Thank you for your encouragement. I appreciate the kind words. I hope it does help others:)

Ashe said...

I concur, regular blood testing is very important. And depending on your insurance or income it is fairly cheap for a comprehensive blood panel. ABA, A1C, TSH, all that good stuff. 'Cause symptom overlap is a pain in the patootie. Bloodwork will let you rule out the easy-to-verify stuff like thyroid issues, vitamin and mineral issues like the various kinds of anemia, diabetes, and goodness-knows-what-else. As for other issues that cause those deficiencies and surpluses, eh, gotta hope for a good physician that knows how to see the big picture. Sometimes excess potassium is simply an extreme adoration for bananas rather than a processing problem. :P

From what I can gather from listening to others and from personal experience, your own chronic nuisances are always normal and everybody else's are scary. I guess it's just a matter of mastering the daily dance you must perform. And once you work out your rhythm, your dance is a piece of cake. It doesn't change the hard facts about the demands of a forced lifestyle and anybody with proper sense won't shame a person who discusses those hardships honestly.

Kmarie said...

Ashe: Yes very important...we don't have to pay for our bloodwork here...but I would still if we had to! I try to get my kids done every few years...

That is a very good is a matter of mastering our own individual daily dance. lovely points:) Thank you for your support!:)

Unknown said...

Hey, you've got this. Everyone has a natural rhythm whether it's the driving beat of a mambo or the flow of a plaintive sarabande.

World Domination-How To: Kagamine Rin and Len
Hitorinbo Envy: Hatsune Miku
Sympathique: Pink Martini
Pon Pon Pon: Kyary Pamyu Pamyu
World's End Dancehall: Luka and Miku
(Look for dubs by SirHamnet and JubyPhonic.)

Kmarie said...

Thank you very much:) And the songs are excellent suggestions...I appreciate the thoughts:) I hope you have a great weekend:)

S said...

I also have memory problems, that too, since childhood. Among chronic illness, I have thyroid issues and I used to have hormonal health issues. It takes me a long time to recover compared to other people and I have seen that I never really quite recover fully, some symptoms stays on even if the doctor tells me that I am ok now. I have a friend who is suffering from chronic illness since childhood. She loves to read and write just like you. I get a lot of inspiration from her. I have tried a lot of coping mechanisms, and I am learning something new each day....Support is very important but when there is no support/inadequate support, it gets difficult...then I turn to my friend ( who lives far away) with the help of long distance calls...her words soothes me and helps me to heal, if not physically but spiritually... Thanks for writing about your experiences, we need to share our stories with each other, it provides us with strength,
take care,