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    SEDGEY   25,736
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Living with Pernicious Anemia

Monday, January 24, 2011

Finally my promised final installment about Pernicious Anemia.

As I alluded earlier, I wasn't having much of a life before I started getting treatment and regular Vitamin B injections. I was fairly literally sleeping my life away. I was also so physically fatigued that it was difficult to get much exercise. Whenever I did feel well enough, I did go out hiking but I really wasn't able to maintain any type of regular activity. That year of inactivity has really played havoc with my general health.

Now that I've finally got my B levels under control, I usually have a normal amount of energy to get through the day. Actually since I started with SparkPeople and have been exercising more regularly, I've been able to reduce my injections from an average of 3 per week down to 2 per week. I'm confident that I'll be able to get down to once a week soon and eventually once a month.

So what am I doing? More of what I've always enjoyed doing which is hiking and yoga. I'm also doing some of the strength training as guided by the Fitness Tracker. I also use the Nutrition Tracker, but I'm not on any particular diet beyond trying to minimize simple carbohydrates and make sure that I eat plenty of fiber. Too much according to the Tracker, but it doesn't cause
me any problems so I'll stick with what I'm doing. Since the lack of Intrinsic Factor leaves the stomach without much acid, I'm also trying to make sure that I incorporate some acidic foods daily. Citrus is a good choice at this time of year, but yogurt, pickles and vinegar-based salad dressings also fit the bill.

I also take supplements. I'm sure that I have very expensive pee, but my Naturopath thinks it's a good idea and it gives me some piece of mind. I take a daily multi, Vitamin C, Calcium, and cranberry. For my arthritis, I take 4x 1000mg fish oil, Vitamin D and a glucosamine-chondroitin-MSM. I've also recently started with SAM-e since it works with the B vitamins and when you're deficient in one, you're most likely deficient in the other. Since I have trouble sleeping, I also pop a melatonin each night. Even with Costco, it still ends up being expensive pee.

I still suffer some of the effects of Vitamin B deficiency. When I need a shot, I have incredible hip pain, a sore tongue, numbness in my arms, and fatigue. Because of arthritis, I often have some sort of pain going, but it has just become part of the background noise of my life. I try to not let it stop me and just adjust my exercise to not impact whatever joint is aching that day. Exercise is good for arthritis after all!

Another problem that hasn't reversed itself as quickly are the larger-than-normal flattened blood cells. I can't see that, but I can sure feel it. Since red blood cells carry oxygen, I often feel winded and can't catch my breath even when I haven't worked that hard. It can be frustrating to be out hiking and huffing and puffing right from the start before even having a chance to get tired. I'm hoping that this corrects itself with time.

My hope is that with the incredible support that is available here on SP, I'll be able to drop the pounds, become better conditioned, and ease my joint pain. If there was enough of us, it'd be nice to have a SparkTeam for Perncious Anemia sufferers. If there are other sufferers out there, just leave a comment on this blog and maybe we can get a group going!

(DISCLAIMER: I'm not a nurse, doctor or vet nor do I try to play one on the internet. I am just relating my personal experiences with this condition. If you wish to engage me professionally, I will have to draw you a road or bake you a loaf of bread.)
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SEDGEY 9/15/2013 1:54PM

    Howdy Mtn_Kitten! Getting caught up on SP emails so today I saw that you'd posted here.

I'm down to a weekly injection, sometimes even 10 days although that is pushing it, and I do take sublinguals occasionally when I need the boost at work.

I have migraines so I do get stabbing pains in my head, but probably not PA associated. :)

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MTN_KITTEN 8/12/2013 5:01PM

    I just found your post ... I am new to SP.

Are you still injecting B12?
Have your tried sublingual B12?
Do you are have you ever gotten a stabbing pain in the top of your head?

I would love to hear from you.

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SEDGEY 1/28/2011 3:05PM

    What a sweet thing to say, Carrie. I really appreciate it. I'm glad that I've been helpful to you too.
This is a great site. I've not moved the scale yet, but I know I'm building muscle. I'm not freaking out. YAY!
WE CAN DO IT! emoticon

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CARRIE_DIGITOUT 1/28/2011 2:12PM

    Sounds like you have got a good hand on your situation and your doing everything you know to do to overcome this battle on your body! I'm here to cheer you on to continue battling! You are ahead of the game I believe. Keep up the good work and keep us informed on your progress. I just want to let you know that you are an encouragement to me and have helped my progress in getting my life turned around in losing weight and being fit once again. Thanks!

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SEDGEY 1/25/2011 8:17PM

    Thanks! I wanted to do my small part in telling people about this problem. It only affects about 1 in 2000), but it's commonly misdiagnosed particularly in the elderly where it is mistaken for the onset of Alzheimer's and/or Parkinson's. So many more people could be living a normal active life with a simple supplement. Most don't have the absorption issue so it's just a matter of taking a pill. Simple, but easily overlooked.

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THINRONNA 1/25/2011 4:20PM

    You have done an amazing job getting this situation under control. I had never heard of Perncious Anemia so I thank you for enlightening me! You certainly are being proactive and it seems doing everything you can think of to work through this. Please keep us updated on how it is going. I agree with you...SP will help.

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