Wednesday, December 6, 2017

Catch 22 in Health, Low Ferritin, Lyme, Autoimmune and Anemia. The Dangers and Experiences of Iron Transfusions. The Valiant search of Women Warriors for Low Ferritin Answers.

You may have clicked on the label and are looking for this specific post on Lyme. I included a few more posts where I reference it but this is the one I actually talk thoroughly about Lyme Disease:

POST UPDATE: I tried the Flintstone Vitamins ( the hard non gummy ones with iron ) and they are disgusting. They are as hard as rocks and have a bitter/ petroleum rubber aftertaste. Upon looking that aspect up - I found other people mentioning this aspect of the newer vitamins. I don't think I will be taking them now. Scratch that- I will be throwing my bottle out- I can't handle it.  It was worth a shot but something that tastes that chemical ish can not be good. I wish there would have been negative reviews when I bought them about this but I will leave one. Now I am going to concentrate on probiotic gut biome instead to see about absorbing my iron instead. That said, Maybe they do work? Maybe my taste buds are off or I am reacting differently? Anyway I am going to try a enteric coated probiotic with a minimum of 8 strains daily and increase my vegetables and fermented foods.

*This post is for those unlucky souls who are in a catch 22 of health. Where an attempt to correct or to cure causes irreparable damage....yet it can not be helped. It is a helpless place to be in, even while one fights for their autonomy. I also dedicate it to the women on health boards and Instagram stories that I read about regarding low Ferritin. ALL of you inspired me. ALL of you made me feel less alone and gave me tips to approach my own decisions. I saw many photos of women warriors taking corrosive material into their blood, so they could be the best they could for the people counting on them. I heard strong tales of struggle, heartache and questioning. I saw beauty in the raw tales of blood and loss. I heard the upsides and downsides. I saw the results in others lives (or lack thereof.) Thank you for telling your stories.* *As usual, any medical advice should be taken with wisdom, assistance and talking to a professional who knows your condition, before you make a choice.*

Last night I spent a horrifying few hours reading stories on my husband's Instagram with the hashtag #ironinfusion or #ironinfusions or #bloodtransfusions or #lowferritin. The only redeeming aspect of this was finding out I was not alone. This fact also was a catch 22, because I would almost rather be alone. I hate knowing that hundreds of others suffer from the same issues and many of them are still asking for answers after many years of searching. The commonality in all of these fellow warriors was that MOST did not know what their cause was. The most common cause known for low Ferritin which was cited was Chrohn's disease or previous surgeries or bowel tests causing bleeding or ulcers. The minority knew for sure what their cause was. The rest were still searching for THE reason their Ferritin would not go up or they had the ambiguous hashtag #lyme.

Lyme disease is a very tricky beast to figure out, cure or even diagnose (speaking from experience) and even though it is related to low Ferritin, most doctors do not know how to approach it, nor do the patients. It's a guessing game where the patient becomes the dissected trial. A vast majority of low ferritin sufferers were also runners or high intensity work out patients...oh and all except three of the hundreds I scrolled through were women. For some their cycles were blamed but most knew that was not the root of the issue. Men naturally have more iron in their systems and often will have the opposite issue of Haemochromatosis, which is serious, so I urge any man reading this to get checked or at least donate blood if you can. Donating manages this risk.  Most of the women were trying out infusions because they were so tired of being tired.

Here are a few posts (with the names cut out for privacy) to give an idea:
What stood out from this was the nurse stating, "Well you know, it's a corrosive heavy metal that we are pumping into you. It's very hard on your veins, your entire body, and it takes awhile to recover."  That is another catch 22. The body needs a certain amount of iron to function but even taking iron in the pill form has it's risks. Iron is not broken down well from the liver which can cause complications later in life. It also can feed cancer cells and up the chances of cancer later in life. For Lyme patients this fact is even worse- Iron FEEDS bacteria which then increases Lyme regression, attacks, and worsening of the body's condition. BUT, if levels of iron in hemoglobin are dangerously low, cell size has shrunk, or ferritin is almost non existent, there are risks of death, heart attack, stroke and numerous other conditions. Thus, another catch 22. It feels like the patient is screwed either way.

Recently my iron went from a point of two to a nine. I felt WAY better (CLICK HERE.) Nine is the highest I have ever managed to attain in ten years. It fluctuates. For it to jump that high in a month due to Ferramax and help from my Naturopath was a big deal. But then, this last month right after, I dropped two points to a 7 (CLICK.)  And I felt the difference. My Haematologist was not happy. My life has been reduced to numbers. Well, not completely, but that exaggeration feels true sometimes.

Another commonality I found in all low ferritin sufferers was their mental strength. Most of them had horrid experiences, not a lot of improvement even after their infusions, and a general bone weary exhaustion in life and yet they seemed to be like myself... they were fighters for the bright side of life. They often would use phrases like, "One day at a time right?" or "I'm so so tired..." followed by "but I'm grateful."  These are women who don't know from month to month how life will shape up for them. They can't make plans in advance. They trudge through their days wondering WHY they feel the way they do. They hope the next doctor will know. Many are at the mercy of guesswork. The lucky few find an insightful, brainiac doctor and find their way back to 'normalcy.' ALL of them had chronic conditions like Fibromyalgia or Lyme or Celiac or Crohn's Disease or Colitis or...ect. ect. Many were not sure if it was the chicken or the egg? Some speculated the years of low ferritin caused the autoimmune response while others believed the autoimmune diseases caused the low Ferritin. Who is to say? All were searching for more answers of healing. 

I love the post below. I found that this lady had amazing perspective. It resonated because she uttered statements I have said before like;
 "My doctor says I'm quite the conundrum." 
"What am I going to do with you? He is not the first to ask that question."
"Because I have worked so hard on my health and fitness." (Amen sista!)
"I'm always tired, though. So tired that my tired is tired."
"I don't actually remember what it is like not to be tired."
"It will be interesting to see what normal feels like, whatever that is."
"I'm slightly annoyed by the inconvenience."
"I'm really so fortunate to be as healthy as I am."

Her last statement and comparison to Chemotherapy is unfortunately a common comparison. I have read multiple boards of women who will say that. While it is good that we can acknowledge worse circumstances and are grateful for the health in ours, and have compassion for cancer patients, it's actually doing a disservice to both parties to compare. I read a study that cited low ferritin as the same level of exhaustion and some of it's treatments as the exhaustion from chemotherapy. However, Ferritin patients are lucky to escape the rest of the cancer complications…though some of them are patients of both unfortunately. I am very grateful that even though my situation is precarious, I am not yet projected to be fatal. I have immense empathy for all the sufferers in the world. There are WAY worse conditions in life. Cancer IS one of them. I am still functioning almost like a "normal person". My hidden illness is both a blessing and a curse. However, I DO believe it is important to keep perspective. Not comparison. To realize the beauty and gratitude in my situation. When I can, it is important to support the awful situations of those I love and to see their differences without allowing them to negate mine or other's experiences. I will do my best to show up, how I am able. I love that the woman in the post above was using her walk past the cancer ward to enable her perspective. It is why her post stood out to me, as well as the other statements she said that sounded a lot like myself, but I wish to include the caution that perspective does not mean comparison. It still sucks to face risks of another sort in another condition.

"Anemia is being more than just tired or cold. The symptoms that a lot of people don't talk about is the fast heart rate, struggle breathing or pica...I couldn't remember passwords, family members bday, and my own social security number. I had to relearn things that I would have known before. Nothing could have prepared me for this journey... I don't understand why I have to go through this but I know I am strong enough to handle this. I have an amazing support system." - I feel the same way. I think most of the women I came across had similar sentiments. I especially have empathy for the low ferritin sufferers/anemics who have no support at all. My husband will often bring me heat bags when my feet or hands are so cold they are in pain. No amount of rubbing or blankets or even putting my feet on his torso will change my condition until I either jump in a hot shower for a longtime or use a heating bag. Although when desperate and with no other option, he will lift his shirt for me and I will put my hands or feet on his warm torso or back, because I am almost crying from the cold pain. My pits do not work because they are cold too. My own body heat does not work in these circumstances. It probably looks hilarious but my children are used to it. If he is not home and my heat pack can not be found sometimes my children will take my hands and put them in the folds of their elbow until I can feel my fingers again. That's just one small aspect of low ferritin/anemia that is inconvenient on a daily level. I can not imagine having no one for support with the other symptoms. It is a family effort to keep our lives ongoing and the chores done with my level of exhaustion. I do a lot for my condition but I am ready to admit that my support system is integral to my fight.

I was searching for stories late last night, because I was considering infusions. That quickly changed as I scrolled through the many stories. Most were not too successful. Some were for awhile, only to be back in the same boat months later, after going through the trauma and side effects. That is not  worthwhile incentive for me. After listening to the personal posts, I read a few peer reviewed medical studies along with medical sites that promote infusions. (Insomnia at least has a perk of loads of research time!) The post image below gave a good summary of the common side effects I found from iron infusions:

In summary, there is a strong history of anaphylactic shock which is why they enforce Benadryl in the IV as well. If you get past that point, it is similar to the flu but worse. Iron is corrosive. It is hard on the body, blood and veins. It is VERY hard on the system and takes days to recover. The side effects are prominent and often include vomiting, immense abdominal pain and cramping, muscle cramps throughout the body, pain down the limbs, lack of saliva and a metal taste in the mouth for weeks, anxiety ect. Some of the women were still experiencing side effects months later. One story had a woman whose iron fell even more after the infusion and she experienced diarrhea that still was not fixed three months later. That symptom began after the infusion.

Basically, I read enough to know that I would have to be KNOCKED OUT cold on the floor with no hope of waking, to be forced into an infusion. No thanks. Yes, I do realize I am choosing to die slowly instead, if my ferritin does not improve, but it literally will be my last resort and ONLY if I am unconscious and my husband chooses it for me. That sensory onslaught plus being at the hands of medical staff when I already feel out of control, plus the risks, plus possible long term and short term effects does not sound appealing to me. Some women chose it and said it was the best choice they could have made. It truly depends on the person. I know myself to know that it's not going to be good. It most likely will backfire. I have suffered more from secondary complications of medical procedures in the past to know this. Unusual things. Doctors didn't believe it unless they witnessed it. For example, when the scope was inserted up my nose, I would not let them finish because I felt something weird. They were SO mad at me. I said it was unnecessary anyway because it was an appointment for a nodule on my thyroid that was already confirmed via ultrasound. There was NO reason for the ENT to be up my nose. When I fumed out of that office, half an hour later on our 3 hour drive home, I noticed a lump the size of a mini goose egg forming above my nose. I immediately called in and they said it was unassociated and 'impossible.' It was clearly from the procedure and I had a headache for days after. My nose also was in pain. My husband witnessed it and I took pictures, I wrote in and they dismissed me. They were rude after being initially kind in the office, because I was unusual. Almost a full year later, a skin tag/mini lump inside the nostril they went up is still there, and it appeared after that appointment. These are small side effects from a very small, not even finished, procedure. I have had this happen with immunizations (luckily Benedryl and the epi pin was administered right away) and other procedures... I can not willingly walk into a situation that could potentially carry those risks.

Surprisingly, in my reading, on three different boards, I found that some women improved their Ferritin stores through the Flintstones Children's Vitamins with Iron. Which is weird because they only have 4mg of elemental iron as opposed to Ferramax which has 150 mgs in every pill. Yet these women swore their ferritin went up after quitting normal iron and taking Flintstones. I promptly ordered the Multi Vitamins and am going to use them in conjunction with my Ferramax. I figure that is worth a shot. That is basically the only answer I came across in my reading that was new to me. Which was depressing. Finally at 3 am, I realized I am only harming myself by reading any longer. It wasn't serving me well to concentrate on the queasy anxiety of the 'Catch 22.'

Many of the women I witnessed on forums and posts were around my age with young families, or they were previous runners and health fanatics. Most even looked a bit like me... with my body type, make up tendencies, and how I take pictures...which I found interesting. Almost every single one of them "looked healthy." Yet, they were fighting for their lives to exist on a level above exhaustion. Most had struggled for years on and off and if I scrolled through a few pictures (cuz I am creepy like that- if it' public- it is available) I found that a lot of them would have photos of them hooked up to a transfusion but in the next few days they were running or on the beach or smiling with their family... In photos previous to their infusions or health updates, they often looked normal, balanced and healthy. There were a few occasional hashtags of #chronicillness or #spoonie or #exhausted with dark circled eyes and a few marks or rashes on their faces.

One of the articles I read spoke about the gut being related to Anemia (which we all know is true on some level. Everything begins in the gut, the second brain of the body.) Often anemic patients with low ferritin have zit like rashes around their mouths and on their necks. The bowel specialist said this was from the body trying to get rid of the toxins unsuccessfully. The toxicity of the extra iron in the supplements plus the bowel configuration of autoimmune patients usually results in a lack of good gut flora and bacterial balance in the body which then makes absorption impossible. Yet another 'catch22'. Fermented foods, yogourts, kimchi and all the usual gut healing options were mentioned...and no gluten or sugar even when you are not celiac. I already do all of that. Although I found out a product I was consuming from last January to August every morning (my granola) had wheat in it- I somehow missed that! I thought my mono at the time was causing my gut pain and I even asked for a stool sample because I could not figure out why I was stomach/gut sick every day. Luckily, I ended up scrutinizing all my usual foods and in August realized I was consuming gluten regularly. As soon as I stopped the granola, two weeks later all my gut symptoms disappeared. My absorption could still be affected from my villi inflammation during this time. Know your foods. Know what you consume and what makes you feel sick. This information matters. This information is also both validating and depressing. Those who are chronic illness sufferers of any type, often know their condition inside and out. If they have suffered, they KNOW what will help, the latest research, the diet suggestions, what options there are ect. and YET they are still in their predicaments years later. This is one of the most frustrating aspects of chronic conditions.

I don't have any answers for this. Each time I think I have an answer, a few months later it is disproven. OR I obtain mini answers like diet related aspects, but I still end up with my fallen ferritin levels. It's a constant cycle. A roller coaster of information overload. It is a mixture of doing and being. There are many moments that I just give in or give up and ignore that I have anything...until the thoughts I push to the back of my mind remind me that ignorance can be dangerous. Or more often then not, my symptoms force me to face myself. Then I face it all over again. The worst parts about most of the information are the 'Catch 22's.' The constant circles. One damaging result causing another but if that result doesn't happen, another just as damaging condition will take it's place. It's loads of laughs...Hysterical laughs... or half sobbing laughs...or worse, being unable to laugh. There have been multiple moments on bad days when I am unable to laugh hard or cry...because it takes too much oxygen and energy. In fact, I find often that my moods are repressed by iron intake. I don't actually have as much ability to FEEL things as deeply. Or if I do feel them, to have the oxygen output to express them effectively.

I guess, my 'answers' for fellow sufferers could be summarized as encouragement. Maybe you have researched in circles too? Maybe you have found things that work short term and that matters! Even if it is undone later it still buys you time! My diet was one of these aspects. Maybe you need to ask for more support? Maybe the iron infusion will be the answer for you? Maybe you need to decide to NOT take the infusion? Regardless, I am putting this out there for you to know, even though it feels isolating, you are not alone. You are not the only one frustrated with the Catch 22's of Chronic illness. And keep sharing the small steps that make life better, because maybe like the Flintstones Vitamins- someone like me will try something that COULD work for them? (P.S. I checked with my Doctor first to ensure I wasn't overloading my vitamins.)

On and off, I get stronger. I have been on the treadmill for 7 weeks which is also a catch 22 as long term exercise depletes Ferritin according to multiple studies. But I love it and feel great for that 40 minutes every day. That matters to me. Also, in the mind, I think I am stronger than I was in previous years. I AM stronger in spite of and maybe because of this journey? It's a paradox. I'm both stronger and need to do what is best for myself, yet at the same time I need help from my support system, good medical professionals, and my friends. It's a mixture of both (which I will leave two songs for that portray both of these opposing emotions.)

May you find both your strength alone and strength within supports. Keep fighting fellow warrior. Also, rest well. Surround yourself with warm blankets, sip hot, cinnamon topped tea or cocoa, and indulge in your favourite happy books or shows. Try to balance your low energy with beauty. Balance your hardships with joy. Allow yourself to BE in your genuine walk.

POST EDIT: I also found this article...I don't know how legitimate it is but I will be researching it more and bringing it up with my regular doctor and functional health doctor:
Help - the Beatles ( I LOVE this video from Glee. This is one of my favourite episodes- see THIS post for why...but this song and the way they bring rivalry Glee clubs together for an epic proposal is so fun! Plus it has Supergirl and The Flash amongst the Glee clubbers.)

Help!- The BEATLES 
 "Help! I need somebody
Help! Not just anybody
Help! You know I need someone

(When) When I was younger (When I was young) so much younger than today
(I never need) I never needed anybody's help in any way
(Now) But now these days are gone (These days are gone) and I'm not so self assured
(And now I find) Now I find I've changed my mind, I've opened up the doors

Help me if you can, I'm feeling down
And I do appreciate you being 'round
Help me get my feet back on the ground
Won't you please, please help me?

(Now) And now my life has changed (My life has changed) in oh so many ways
(My independence) My independence seems to vanish in the haze
(But) But ev'ry now (Every now and then) and then I feel so insecure
(I know that I) I know that I just need you like I've never done before"

Stronger- Britney Spears "I'm stronger than yesterday..."


S said...

First of all, thank you for writing about the two most important and puzzling subjects, that is always on our minds, i.e. health and the currently available medical cure/treatment. This post will be immensely helpful to those people who suffer from any auto immune condition, low ferritin or any other chronic illness. Helpful, in the sense that a paradox will seem less of a paradox when most of us have gone through it or witnessed it. I am also on the same journey with similar illness but I have not tested my Ferritin levels yet. I might do as well soon. I have read somewhere that ferritin and hyperthyroid is related and I have both hyper and hypo thyroid issues and in my case, it always starts with hyperthyroid.
Anyways, I am also with you in this puzzling journey of ours, and I also tend to balance my low energy with beauty-yes, thats what I do exactly during hard times ! I hope you feel better in the coming days and I hope we reach a point where less medical intervention and more healthy foods/natural solutions will be a common theme of our lives !

Kmarie said...

S: The current medical culture should be vastly more advanced then it currently is considering our other advances...but I guess the same could be said of religion and ethics. I am glad you found this post helpful and u r right- paradoxes are easier to live with when you know you are not alone... Yes you should check your Ferritin as you are right-- they often fall with hypothyroid...and thyroid issues...I also forgot to mention Lupus can be another common one to have low ferritin in.
I think that is the best approach in hard times. I also hope you feel better in the coming days too..and I agree that would be a hopeful future indeed:)