The Reality Is...

Yes it's hard. Yes, life sucks sometimes. Yes, sometimes the pain is so bad you want to just leave this life for the next one. Yes, it's difficult for people to understand what you're going through. It's a nightmare at times and it just seems to keep repeating itself. Sometimes, that is the reality of Sickle Cell. Thank God for the people in our lives who are there to care for us, carry us when we can not walk (sometimes literally, other times mentally, emotionally, physically), love us through our deepest trials and pains. Some of us out there don't even really have a network of people to lean on and we are wading through this life just holding on to any help we can get. I know what it's like. Just because I have changed my diet and I have seen great improvements in my health, doesn't mean that I've been cured. I still get pain at times, pain that seems to want to take over my body and have my life stop being my new normal. Right now, my right ankle hurts. Yesterday, it was my left ankle. A bit earlier, my stomach was hurting, and I think about how it was the painkillers - that I only took to manage the pain brought on by the disease - that ruined my stomach in the first place. I was just remembering how it was my oldest sister who ran downstairs and got honey and mixed it with Cayenne Pepper on a spoon and made me take it when I was curled up on my bed with stomach pains from the damage the NSAIDs had done to my stomach. I DID NOT want to try her stupid home remedy. Does she know she helped save my life that day? I remember how my second oldest sister, time and time again tried to get me to try Cherry Extract when I was suffering from hip pain which made me nearly immobile - kept me from getting out of the house and from going to work or school - and I couldn't deal with too many stairs for years after I had my hip crisis in the Summer of 2008, which I believe left part of my hip muscles infarcted. Finally, in September 2014, I tried her stupid Cherry Extract. And found out that it worked. Both of my sisters' stupid home remedies actually worked. They helped to restore my desire to live, they helped restore me to health, and helped me get on a path to desiring to live instead of being ruled by the pain, by the emotional, mental, physical, sometimes spiritual turmoil that sometimes comes with it.
I share my story and these resources and the things that I do to remain healthy because I know it makes a difference. People may not comment on these posts, but I see the number on the bottom of this page rising, and I know that there are thousands of people out there who have benefited from these words. So I will continue to post them, whether I get comments or not, as I am able to. I just want people out there to know that there is hope. No, I'm not talking about a cure, I wish I was. But, I am talking about natural treatments, natural things that you can add to your diet that can help you live a better quality of life. You may not see immediate changes. Don't give up hope. Incorporating these changes takes time. Give yourself time. But don't be afraid to try something new. Don't just read and forget about or dismiss these stupid home and natural remedies. Read them and let them stick in your life. Try them and see if they work for you. I have failed along this journey so many times. Royal Jelly? Epic fail. Nattokinase and Serrapeptase? Epic fail. Trying to treat my ulcers with red cabbage and aloe vera? Super epic fail! Beets? I can't eat them anymore. But... I haven't given up. My diet is pretty limited now... but... I haven't given up. I thank God for the people who have been there to care for me and encourage me along the way. I couldn't have done it without them. Because of these people, I am still here today. Because of these people, I can offer you encouragement. There is hope. There are options. Try, try, try. Read, share, and try some more. There are resources out there besides painkillers and I want the whole world to know so that the suffering caused by Sickle Cell can be decreased. So, please. Read, try, share, and read some more. I hope that this helps someone, God bless. :)

Be Careful with Painkillers!

One of the sad things that I've experienced as a result of having this disease is the abuse of painkillers. From the time I was in high school to about a year ago, I popped pills like they were candy. Whenever I felt some aches and pains coming on, I hopped right on them with a painkiller. I didn't know how else to manage the pain, and I was doing what the doctors had told me, which was to drink water and take painkillers whenever necessary. Living with this disease has been incredibly difficult, and there were times when I would take some painkillers and drink my water and just go to bed, hoping and wishing that I wouldn't wake up and have to deal with any more pain. Mind you, the pain wasn't always severe. It was just the constancy of it that was wearing me out. I knew that taking many painkillers would damage my body, but I didn't really have much of an alternative. That's one of the most difficult things about this disease. One cannot function with the pain, and yet the painkillers are slowly wreaking havoc upon one's body. And Sickle Cell pain isn't normal pain. It's the kind of pain that can start as a little pinprick and explode into the kind of pain that lands you screaming in the hospital because the painkillers they're giving you simply aren't strong enough.

The best thing about these natural remedies is that they help the body to produce blood cells normally and help the body to make up for what it lacks, especially the Thiocyanate. What I've experienced with various painkillers is this: When I take Tylenol or Acetaminophen, I notice that I have trouble breathing afterward. I have asthma as well as SC, and though my asthma is mild, the Tylenol and Acetaminophen that I used to take in great amounts have grown to aggravate my respiratory system. I developped ulcers as a result of years of taking Ibuprofen (anti-inflammatory) and Aspirin (blood thinner). I knew that I was doing damage to my body when I was taking them, but it was between choosing to live with untreated pain that was driving me to suicide's door, or taking the damaging painkillers to help make life more manageable. I was taking such doses that people who are more sensitive to painkillers would be a bit worried when they noticed what I was taking, but it couldn't be helped. Until now. Now I take painkillers much less frequently, and I hope that my body has become more sensitive to normal doses of painkillers (though I'm not very certain about that.) I am determined to stick to this diet and to this natural way of treating my disease, and I hope that this blog can be an encouragement to others who are dealing with it.

Starting Serrapeptase

2 January 2013

Just got my Serrapeptase and took my first capsule. It’s 120,000 iu. I figured I might as well go for the stronger one because from reviews, some people say that they take 2-3 of the 40,000 iu ones daily, and multiply that and you get mine. I’ve been feeling good lately, but that also makes me a bit scared because this disease is entirely unpredictable. Last week I was having the pains around my joints and this week a tiny bit in my bones, but it’s gotten a lot better and much, much less frequent. I suppose that’s a good sign. Today I am going shopping for plantains to round out my diet and make it more full of the bigger Thiocyanate containing foods. I also haven’t had plantains in a few days though I’ve been eating lentils. I am thinking of turning this into a blog, that way other people who have SC can see my progression and my also draw information and perhaps inspiration from it. Hmm.

A More In Depth Update

30 December

I feel like I’ve been having mysterious, almost Sickle Cell pains since I started drinking the Chlorophyll, or maybe a tiny bit before that. It’s weird. Maybe my body is incredibly tired? I cannot wait for the Serrapeptase to get here!

Since I don’t know what’s going on with my body and since it seems like the mysterious pains may be linked to the chlorophyll. I think I will take it every other day. Or what if the pains are because I do not have enough thiocyanate in my body? I really wish there was a greater wealth of information out there for me to judge my experiences by!

Maybe it’s not related at all to the chlorophyll, perhaps it’s the way I fell from ice skating on Thursday. In any case, I will keep taking the LC because it provides what my body needs and I don’t want to discontinue it’s everyday use so soon.

I must note that I was getting pains in my eyes a bit last week and the week before. I have to keep track of these and have an appointment ready with Dr. Svitra when I get back home.

27 December

I’ve been feeling like there’s a bit of inflammation above my left knee at night the past 2 days and I’m wondering if it has anything to do with the chlorophyll? I am so excited for my Serrapeptase to get here! 

I decided to discontinue purchasing carrot juice (I had purchased it on a whim in the first place). From research I did about carrot juice, it is best to have it freshly juiced as it does not keep well in the fridge. I bought mine from a huge supermarket/department store, and the only ingredients were carrot and lemon juice. However, from research I did, bottled carrot juice doesn't keep as well and may not contain as many nutrients. Perhaps it does have benefits, or perhaps it is more like orange juice (all the oxygen is sucked out and flavour is re-added through flavour packs, so it's just colored water by the end of the process.) In any case, since I don't have enough knowledge about the actual benefits of the carrot juice I bought and based on the research I did, I decided to discontinue purchasing it. Plain old carrots are good enough for me.

26 December

Bottoms of my feet are no longer yellow as far as I can tell. Received my chlorophyll today and had my first tablespoon in a cup of water. It was incredibly green. I hope that it will help my health! Here’s to greener pastures! (pun intended)

23 December

The bottoms of my feet are yellow. I wonder if it is because I have been drinking carrot juice recently. Yet another thing to worry about.

A Second, More Informed Decision to Change

21 December

         I have been eating a diet high in thiocyanate, mainly lentils, chickpeas, plantains, and bananas, but I have also been feeling quite tired. I suppose I haven’t been eating enough greens so I will remedy that later today by buying String Beans. I have also been eating a lot of eggs because they are packed with nutrients. Yesterday I did some research[1] and came across a blog where a woman talks about taking care of her son who has SC. I commented asking what she uses and below is what she described.

Hi,

Have you had any crisis while eating this diet? I just find the herbs work so much more better for my son. I give him Liquid Chlorophyll, Nattokinase-Serrapeptase, I get LC from Sprouts or you can also find at Whole Foods. I get the Nattokinase-Serrapeptase from one of the local natural health stores in the neighborhood. I also give him Folic Acid/B6/B12, this come in one bottle and dissolves in your mouth, I get this from the natural health store as well. And lastly the Beet root juice, i get from Sprouts. So LC helps raise hemoglobin, increases oxygen, builds red blood cells, detoxes the kidney and Nattokinase prevents the blood from clotting up and sticking together. It helps the blood to flow in the most natural state, getting rid of all the bad protein and toxins in the blood. the Beet juice is good for the blood and raising hemoglobin as well. I've had GREAT success using this combination. I can rely on only food right now with my son because he's just 4 and he's not going to eat enough leafy green vegetables that will prevent him from having crisis so it's easier to put in his juice, this way I know he's getting all the nutrients he need to prevent crisis. Also we stopped eating processed foods, we eat lots of fruits and veggies but that's good you are eating the foods you are eating by all means still eat those foods but you may need more herbs to completely help the situation..

Take care.

         I don’t know about finding these things in France, but I will try to get my hands on them. I feel like my whole life has been a quest for normal living, and my diet now feels more normal, but I would like to be even more normal. I will keep searching, keep trying, and keep documenting. Natural is definitely the way to go. If I had listened to my doctors, I would definitely have been dead already because the pain is just unbearable at times, and for them to have told me that drinking lots of water and taking painkillers when necessary was the only thing I could do was incredibly false. I should also try to get the word out as much as possible about Thiocyanate and eating a healthy diet because this is changing my life for the better and I want those changes to continue and to expand for everyone suffering from this horrible disease.

         Here’s the plan. Today I ordered Liquid Chlorophyll from Amazon.co.uk. I will add this to my diet and keep it for a month. Seeing how I feel from there, I will look into adding Nattokinase-Serrapeptase to my diet. I will keep record, maybe not daily, but will keep record of how I feel. Right now I feel tired, as if my eyes are half open, as if there is a bit of a strain behind my eyes. I am hoping that will clear up in a few days, and I am sure I feel that way because my diet is not varied enough. With these results in hand, I will begin to share my findings with others who have sickle cell, especially my cousins in Florida who are often sick.

         Today I am adding carrot juice to my diet, and will be eating a more variegated diet from now on. I may keep a record of the foods I eat.

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[1] http://www.sicklecellsupportgroup.org/Dioscovite.html, http://ssnaturalhealings.blogspot.fr/2012/12/hydroxyurea-side-effects.html?showComment=1356075690769