I'm having a SC crisis. It's a new and improved version on it because of the changes I've made to my diet, and it takes me longer to recognize what is actually happening to my body. Sometimes, I just think of it as pain. Normal pain. Which is something I'd almost never experienced before my dietary changes. It's been 3 years and my life has had a complete turn around. Okay, so details. The weather on the east coast (anyone else from NYC out there reading this blog? Shout out!) has been quite funny, as it varies from being warm/hot to chilly/windy/cold in the same day. I CANNOT handle these strange weather patterns and quick changes in temperature that all happen within the same day. My body does not like extreme weather. On Tuesday (it was hot) I went shopping with a friend, and we went to two locations, a shopping center and a mall. The sun was hot in the car and the mall was cool/cold. After we'd finished at the mall, the weather had cooled down and was getting cooler towards the evening. I went out twice more after she dropped me off home, and the second time I went out, I had to wear a jacket (note all the temperature changes in one day!). The next day, I spent most of the day on Tylenol Extra Strength in bed because my body was in crisis mode. By the end of the day, I was feeling mostly better (well enough to have dinner with a friend ;) ). Today, the weather was nice. It was warm for the majority of the day and again I went out with a friend. This entailed hopping on public transportation, which blasts the AC, heading back outdoors, heading indoors where it was cold, back outdoors where it was warm, repeat, repeat, repeat... In other words, it was a recipe for disaster! Aka another SC crisis. Such is life with SC. Temperature changes such as these are the bane of my existence. The sun literally burns my arms (my most susceptible to the cold body part... they're so skinny!) when I'm in it for too long and it hurts. Even in the summertime I have to carry 1 to 2 extra layers with me, either to cover myself from the sun or to keep myself warm when facing ridiculous AC subzero temperatures. It's a difficult season to deal with. I used to think that summer was the best season because it was warm all around and I didn't have to worry about winter making my bones ache. But summer hurts just the same as winter. The main difference is that in winter I can wrap myself up more and adequately prepare for the killer cold. In the summer, it's a double-edged sword. I get hot easily AND I get cold easily. Not only do I need to dress for the heat, but I have to consider the cold as well. My body can't handle it very well either. I'm doing everything I can and yet SC still is attempting to kick my butt and keep me down. But we are warriors, aren't we? The pain doesn't keep us down for very long and as soon as we can get up we can, don't we? It's not all roses, in fact, there are quite a few thorns along the way. This is the reality of life with SC, and I am keenly aware of the fact that there are many, many others out there whose symptoms are much worse than mine, who deal with more pain than I do, often on a daily basis. I write for them as well as myself. I write because I have a new hope and I want to share that with others as much as possible, that others too might now that there are life changes that can be made to help their health. It's not easy for sure, but it's life, and life, by definition, is not easy.
Showing posts with label living with sickle cell anemia. Show all posts
Showing posts with label living with sickle cell anemia. Show all posts
Saturday, May 30, 2015
Doing More Harm Than Good? Royal Jelly Update
There have been points along my journey where I've had to stop and take inventory and wonder if the new thing that I've added to my diet hasn't been doing more harm than good. Currently, the thing that I'm wondering about is the Royal Jelly. It's a super-food and has many beneficial properties... however, it doesn't seem to be benefiting me as much as I thought and hoped it would. As I wrote in my original post about Royal Jelly, I was hoping that it would be a cure for my ulcers. However, during the first week I took the Royal Jelly, I started experience stomach pain again! My sister said that I should continue taking it for at least another week to notice its effects. However, we ran out and I was a bit reluctant to continue taking it, as I wasn't sure what the side effects were.
After my body began having all these strange pains and I began to feel those asthma symptoms again, I began to wonder if whether or not I would be better off without taking the Royal Jelly. I took it for a few days more and then I discontinued its use entirely. Having taken it out of my diet, my overall health began to return to its new normal. So, it was a failure of an experience for me. I think that the ginseng also contributed to the symptoms I was feeling, however, I was still getting those symptoms on the regular Royal Jelly. The point is, I tried. Maybe I should have done more research before trying. I'm just thankful that the outcome wasn't worse and that I was able to put 2 and 2 together quickly enough about what the Royal Jelly was doing to my health. I no longer take it, but I think that it may actually have benefited my stomach to some extent, because it is now the end of May, and I no longer feel like my stomach is as much of an issue as it was. Also, I no longer take Cayenne Pepper daily for my stomach, only as needed. So something along the way, or multiple things along the way, have helped! My stomach still gives me the occasional pains, but I can live with it!
http://www.ncbi.nlm.nih.gov/pubmed/8835130
So I took the Royal Jelly for about one week, beginning on March 20th. And let me just say, I started by taking like 2 TABLESPOONS of the stuff at a time. I really really wanted my ulcers to heal. I was getting some weird types of reactions from my body, like with my stomach hurting and also I felt like my asthma symptoms were starting to increase. Adding Magnesium to my diet (which I did around January or maybe the end of December) has greatly helped reduce my asthma symptoms as well as my monthly cramps, to the point where I rarely ever use my inhaler anymore. Before January/December, I was using my inhaler quite often, and taking lots of pain killers each month for my cramps. After adding the magnesium, I noticed that my need for the inhaler decreased overall, as well as my monthly cramps. Jump to the end of March, and I started to feel again that I was having some difficulty with breathing at times (but not enough to necessitate the use of my inhaler again. That stuff has side effects too, it's a steroid! I only use it when necessary.). This need would arise especially when I was coming up out of the subway after taking a lot of stairs and when trying to run to catch my breath. I thought it was strange, but it took a while for me to connect this problem with my intake of the Royal Jelly. I stopped taking the Royal Jelly around March 27th, partially because I was wary of it, and partially because we were running out of it quickly because I was gobbling it down. On April 2nd, we received the second shipment of Royal Jelly that my sister ordered. This time, what was ordered was the regular Royal Jelly as well as one that had a mixture of ginseng in it. I resumed taking it that same day, and again I started to feel those asthma symptoms as well as tummy trouble. I had looked at many different websites talking about the side effects/benefits of Royal Jelly in the interim period of not taking it, and also continued my research after I resumed taking it. Some of my sources are below. One of the best pieces of advice I found on a website about Royal Jelly was that I should have introduced it to my diet slowly, and increased the dosage from there to avoid any side effects of it. After reading that, I decreased my dosage to about 1 TEASPOON at a time. On April 2nd, I had started with about 1 and 1/2 teaspoons, but afterwards I decreased it. I began to notice that soon after taking the Royal Jelly I would feel like I had to go potty (diarrhea :( ), so of course I did more research about it. One article I came across said that Royal Jelly could send your body into "crisis mode" as it begins clearing out your body, with this crisis mode including the need to go potty. So I started thinking that maybe that's what it was. However, I was also beginning to get chest pain again in my sternum, which was also a big problem for me before I began taking the magnesium. On Sunday night into Monday, my body was feeling kind of strange, but I also have to add here that I have not been eating very well lately, and that has been negatively affecting my health as well.
After my body began having all these strange pains and I began to feel those asthma symptoms again, I began to wonder if whether or not I would be better off without taking the Royal Jelly. I took it for a few days more and then I discontinued its use entirely. Having taken it out of my diet, my overall health began to return to its new normal. So, it was a failure of an experience for me. I think that the ginseng also contributed to the symptoms I was feeling, however, I was still getting those symptoms on the regular Royal Jelly. The point is, I tried. Maybe I should have done more research before trying. I'm just thankful that the outcome wasn't worse and that I was able to put 2 and 2 together quickly enough about what the Royal Jelly was doing to my health. I no longer take it, but I think that it may actually have benefited my stomach to some extent, because it is now the end of May, and I no longer feel like my stomach is as much of an issue as it was. Also, I no longer take Cayenne Pepper daily for my stomach, only as needed. So something along the way, or multiple things along the way, have helped! My stomach still gives me the occasional pains, but I can live with it!
Tuesday, May 19, 2015
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. :)
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. :)
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