Pernicious Anemia

Pernicious Anemia is an autoimmune disease. I have noticed that many people that have Sjogren’s also have low B12 counts. I always wondered if there was a connection. Now that I know it is an autoimmune disease I am almost sure there is. Most people who have one autoimmune disease tend to get others. In my case I have Sjogren’s Syndrome, Fibromyalgia, and Raynaud’s, and as my doctor told me yesterday Pernicious Anemia.

Pernicious Anemia is an autoimmune disease that attacks the intrinsic factor. This is a type of protein that helps your body absorb the B12 in your stomach. The body needs the B12 to make red blood cells. If you have a B12 deficiency it does not mean you have Pernicious Anemia. There are tests done to diagnose you. Some people just don’t eat the proper foods to get the B12 in their system. These people can take B12 supplements. If you take supplements use the liquid or the ones that dissolve in your mouth. For people with Pernicious Anemia we need to bypass the stomach and make sure the B12 goes right into our bloodstream. I give myself shots to keep my B12 levels up.

I have read that with a B12 count of 600 or less you can start showing signs of memory loss. For many it doesn’t start until around 400. In my case I start to notice it between 600 and 700. Due to our standards many doctors believe that you must have a count of 200 or lower to be considered deficient.  Each person is different.

I was diagnosed with low B12 5 years ago. I didn’t know exactly what Pernicious Anemia was. I finally started doing more research this past week. Even with giving myself monthly B12 shots my B12 levels are still decreasing. I am now down to 303. When I was first diagnosed through a bone marrow biopsy my level was around 290. I don’t remember exactly what it was since it has been so long.

When I was first diagnosed I had really bad shakes, itchy neck (not listed as a symptom but I know others that have this as well), extreme memory loss (brain fog), bruising, irrational behavior, gastro problems, fatigue, ADD symptoms, depression, vertigo, tingling in my hands and feet, shortness of breath, confusion, nominal aphasia (forgetting names of objects), mood swings, insomnia, arrhythmia (fast heart beat), and vitiligo )white patches that develop on the skin). I’m sure there were less severe symptoms that I had but these are the ones that I noticed on a day-to-day basis.

Almost all of these symptoms are back now that my B12 is getting so low again. As I was getting ready for bed last night I had a few things to do around the house. It would pop into my mind and I’d tell my husband that I was going to do this or that. I’d start to walk off and forget immediately. It’s good that I told my husband because I had to ask him every time what I was doing.

In the past I was told I had ADD and given medication for it. It made me extremely hyper. They decided that  it was not the cause of my brain fog. My blood work was off so they thought that I might have had leukemia or lymphoma. That is how I ended up having the bone marrow biopsy. Trust me the simple blood test for B12 would have been much better!

Once I was diagnosed I did 1ml shots for 7 days, 1ml shots every week and then I started them once a month. I felt a difference once my levels started going up. I realized that I wasn’t crazy and that I could be normal again! I really thought I was losing my mind. When I would talk about something and go to say a word like pencil I’d say turtle instead! I would then not be able to think of the word that I was trying to say. One day I was talking to my mom about something. I don’t remember what it was but I do know the word started with a B. All I could say was “blueberries” over and over again. Again this was one of my crazy moments!

When I noticed my B12 levels going down this time around I asked my doctors how this could happen when I was doing the shots. They did not know. I had to take it upon myself to research and try to figure out what was wrong with me again. It turns out that some people just need more injections to keep it stable. I printed up the research and brought it to my doctor yesterday. I did convince her to let me do more shots. My plan was to do the same thing I had in the past but she would not let me do them everyday. I will be doing them every week for a month and then go to every two weeks. We will monitor my levels and see if they are going up, staying the same or still going down. I am hoping they will go up and that I can get back to normal.

 I don’t understand why some doctors won’t let a patient take the shots. They have been told what is normal for B12 levels and they won’t budge on the matter. You can not have too much B12. It can not harm you. Many people have to fight to get the shots. It turns out that my mom has low B12 also. She has many of the same symptoms that I have. She had the test and the doctor told her it was normal. I made her find out what her B12 level was. Just because a doctor tells you it is normal it may not be. Hers was in the 300’s. I had her ask the doctor for the shots and lucky for her the doctor did prescribe them to her.

If this post jumps around I am sorry. I am having trouble concentrating but I did want to get it out there. I have read that many older people who have dementia actually have low B12 levels and by taking it they can be normal again. I hope this helped in some way.

Some helpful links:

PubMed Health

Pernicious Anemia Society

Warm Weather is Here!

I know I haven’t posted in forever. I have been having some flares that have put me down. They haven’t been too bad. A few days at the most. I also got to go on bed rest after my visit to the emergency room. I thought I was going to die. I thought I was having a heart attack it hurt so bad. No, it was pleurisy. I’m not disappointed it is most definitely the better option! LOL! It’s another one of those things that go along with Sjogren’s and Lupus.

Have a wonderful day!

Winter Sowing

I got this great idea from Kevin Lee Jacobs over at A Garden for the House. He starts his garden in the winter in milk jugs! I did mine on January 31st. Basically you take milk jugs cut them open and poke holes in them for drainage. You can get the tutorial over at his blog.

Here is a picture of mine. I bought some seeds and gathered some from my plants in the yard. Since I have never gathered seeds I wasn’t sure if I was actually getting the seeds so I ended up just crumbling the flower buds up in the dirt. 🙂 I know I have amazing talent!

Seeds I bought: Red Hot Poker (Tritoma), Blue Fescue, Echinacea

Seeds(?) I’m experimenting with from my garden: Purple Phlox, Black Eyed Susan, Marigold, and Mini Pink Roses (can you get seeds from the roses?)

Most of the seed packets said they take a few weeks to sprout, but since it is still winter I didn’t expect to see any for a bit. One of the flowers that I tried from buds were my marigolds. I had no idea if they would grow since I used my awesome skills of obtaining my seeds. To my surprise I went outside today and guess what I saw??? I have baby marigolds!!! I’m so excited! One less thing that I have to buy this year! 🙂

Here are my babies…

Aren’t they cute!

I am still collecting milk jugs since I have more flower buds to experiment with. If you have any send them my way!

Craft Room Almost Done!

About a year ago I started work on my craft room in the basement. My Hubby put up the drywall and my mom got a coat of mud on it. It took me forever to sand it since I get worn out easily. I finished sanding and mom mudded again and I sanded again. I got the primer up and found my paint color and flooring. Today I finally painted the room.  Between two naps that totaled 7 hours.

Paint craft room… CHECK

Separate meat from Sam’s and put it in freezer bags… CHECK

That was the extent of my goal list for today. I’m glad it wasn’t longer. I may have fallen asleep in the middle of something. 🙂

Here are a few pics of the paint color and the one floor tile that I have.

Now Stephan needs to get the flooring in an it will be ready!

Green Onions In My Window

I guess I’m a bit behind on posting. A Sjogren’s flare has kicked in and I am tired all the time. I can’t wait for this to end so that I can get my energy back!

I have been doing things between naps. A few weeks ago I saw a great idea on Pinterest. Putting your cut green onions in water. I love finding new ideas!

I got this idea from Homemade Serenity.

Basically after you have cut the green off of your green onions DON’T throw away the white part! Take it and put it in a glass or jar of water. These were cut down to the white about 2 weeks ago and look at how big they are already! I love this idea. I use green onion a lot and hate it when I realize I don’t have any. Now I have them all the time!

Update 1/9/16 – I still do this! You do have to change the water and rinse the roots out every few days. After a bit I  do toss them out and start with new ones. This summer I just put them in my herb planter on the deck and that worked well also.

Tears

I know we all cry at some point in our lives. It may be that we are lonely, depressed, frustrated or we don’t even know the reason. As you cry your tears stream down your face and you try to hide them.

Many of us can’t do that. I’m not talking about hiding them. I’m talking about crying. We may have those feelings but no matter how hard we try we just can’t cry. Our eyes do not produce tears. You may wonder what is so bad about that… Those if us with Sjogrens wish that we could cry.

When my grandma passed away I couldn’t cry. I felt the same sadness, but the tears wouldn’t come. At the time I didn’t know about Sjogrens. I thought that something was terribly wrong with me that I couldn’t cry.

Yesterday was not the best day for me. No matter how positive I am about my illnesses and my life I still have my bad days. Yes, I was crying last night… It was only out of one eye. The one that still produces some tears. It’s things like that make you step back and realize that you are different. This is my life and the only one I know.

Cleaning Away!!!

Update 1/9/16 –I realized that I am a bit lazy when it comes to making cleaning supplies. I now use vinegar and baking soda for most of my cleaning. I just don’t toss in all the other stuff. (That is the lazy part) My husband got a job way back when so I’m not to worried about the money part anymore but I still rather not buy all that crap. I do still buy 409 because it’s just awesome!

 I found a bunch of wonderful recipes online to make my own cleaning products! It was fun making them and decorating my bottles. I used bottles from all of my store-bought cleaning products so I’m reusing!

Update 1/9/16 – After using this for about a year my whites weren’t all that white so I went back to store bought. The first one that I made was the Liquid Laundry Soap from The Duggar Family! So far it I love it! It works great. I’m not sure if I did something wrong since it set kind of clumped up into think solid balls of gel with liquid. I smashed them up and put them in my old laundry bottle and I just shake it well before use. It still works great!

Update 1/9/16 – I got lazy. I toss in baking soda and vinegar or buy some. The next thing I tried out was the toilet bowl cleaner from Everything Homemade. This product works really good also! It got my toilets really clean. I didn’t have liquid castille soap so I took a bar and dissolved it in a gallon of water and added some tea tree oil.

Update 1/9/16The Best Homemade Bathroom Cleaner Ever is also from Crunchy Betty. I love love love this stuff!!! When I moved in to our house a few years ago there were some stains in the bumps of the shower floor. I have tried everything… I mean everything to get them out! None of them worked so I figured I was stuck with them for the rest of my life or we’d have to buy a new shower. My husband has enter us in the DIY drawings many times for new bathrooms or for your house and as of yet we haven’t won. 😦 I took this cleaner to the bathroom and decided it was time see if it worked and guess what happened??? Did you guess? HUH? HUH? It got those nasty stains out! I was so excited with how it worked! I haven’t tried the 2nd best yet so I don’t know how well it works.

Still using this one – Now at this point I have to tell you I really love Crunchy Betty! She has great ideas! Next on the list is the Daily Sparkly Shower Spray. Now it is daily and I just cleaned the bathroom, but so far it seems to be working great. I need a little bit longer to be sure, but since it’s from her site I’m sure it will work great!

Still using this one Update 1/9/16 – I have to say that I DO use this one still. It is still better than Windex! One more from Crunchy Betty! Her Alvin Corn Glass Cleaner. Now I will say that I have always been a Windex snob. I have tried others and they steak and I just feel like the mirror is not clean. Saying that I have to tell you that I didn’t go into this one feeling hopeful. To my surprise it worked great! I was amazed! It may be better than Windex! It was clear that I felt a little strange looking at my reflection. It was so freaking clear!!! I felt like I could just step through to the other side. Hehe!

After making and trying out all of these homemade cleaners I can say that I truly recommend all of them. All of the items were easy to find and pretty cheap. When you think of how little you use for each recipe it’s wonderful! Think of how long it will last you for CHEAP!!!

Many of the sites said to spray vinegar in the dryer to prevent static. I started doing it and I haven’t had any static! I think vinegar is one of my favorite things. It can do soooooo much!

Speaking of vinegar there is one thing that I’m not happy with… I started cleaning my floor with it awhile back and it leaves a film on the floor. I don’t get it. It’s vinegar!!! I have tried it straight. I have tried it mixed with water. I have tried heating it up! No matter what I do it leaves a film. When we walk on it you can see all of out foot prints. If we slide something you can see the tracks for it. Many others swear by using vinegar to clean their floor, but for some reason my floor seems to not like it. I have a darker laminate floor. If you all have an idea for what I should do please let me know. I’m about to go buy a floor cleaner. My brother has one and his floors always look great. I hate the idea of buying commercial cleaner! Ugh! I may have to turn to the dark side…

I am almost out of my dishwasher detergent so if you have one for me to try leave the link!

Happy Christmas Eve all!!!