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Haven't Blogged for a While

Wednesday, April 03, 2013

It has been almost 2 years since I last blogged. Folks have been commenting recently on my old blogs so I thought I would stop by and leave an update. I haven't been using Spark much recently. I have switched to Face Book. FB has a rich Plant Based, No Oil Community and a few of my Illness communities that I am involved in on a daily basis.

My health has been pretty stable. I have been diagnosed with yet another autoimmune disease. This is a rare one. It is called Cryoglobulinemia. Silly name which means that my blood gels when it gets lower than 37 degrees C (body temperature). So living in Ohio is hard in the winter. It is a form of vasculitis, which causes destruction of blood vessels.

I continue to eat a healthy vegan diet, no added oils. I follow the advice of Dr. Esselstyn, McDougall and all those guys and that is what is keeping me as healthy as possible. Many of the folks who have as many autoimmune diseases as I do are much more ill than I am. Because the tendency of their bodies to get other diseases. I keep my body healthy in these other ways... with healthy food and no bad fat at all.

Blessings to all of you out there. Toni

  Member Comments About This Blog Post:

DS9KIE 4/5/2013 2:55PM

    Glad your back

your doing emoticon emoticon

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    Glad to hear you are staying strong. You give me hope to be able to live with my own medical conditions. Thanks

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LIV2RIDE 4/3/2013 10:12AM

    I'm glad to hear you are doing well. I love how a healthy diet helps with the different issues you have. I know it can sometimes be difficult.

I have also not been on Spark as much and have made FB a much more inspiring place. It's amazing some of the groups you can become part of and pages you can like that changes it from a very negative place to someplace very positive.

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PRETTYPITHY 4/3/2013 9:43AM

    Glad to hear you're doing well!

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SNS1968 4/3/2013 9:35AM

    Welcome back!

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Hi friends

Monday, June 13, 2011

Just dropping by to say, hi to my friends and team mates on the veggie forums.

I am too fatigued to write any more than that. I am reading my team posts and do respond from time to time, but my illness is not letting me do more than that right now.

Hopefully, my energy level will increase soon and I can post on my teams again.

I have promised a few people that I would help them with meal planning, but I am not able to work with them now, maybe in a month or so.

See you guys again soon.

  Member Comments About This Blog Post:

JENJENWH 6/22/2011 9:15AM

    Hang in there!

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BUELLRIDER 6/20/2011 1:57PM

    I wish you all good things. I know it's slowly but surely. Hang in there.

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PATTK1220 6/20/2011 12:32PM

    Glad to see your post! I hope you're on the mend and will be back soon. Wishing you good health and happy spirits!

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SUNNYH99 6/15/2011 12:21PM

    I just stumbled on your blog via a SparkFriend, and I just learned of your health challenges and treatment. Sending good vibes your way, and wishing you all the best now and in the days to come,

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DS9KIE 6/15/2011 9:30AM

    emoticon emoticon hope you feel better soon

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WINACHST 6/14/2011 10:06AM

    emoticon Hope you get better soon.

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LIV2RIDE 6/14/2011 6:33AM

    Sweetie you will be in my prayers. I hope you get all the rest you need. Hopefully your body will rejuvenate and feel much better after this rest period. emoticon

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Social Security Disability Approved!

Thursday, May 12, 2011

Hooray, I just heard from Social Security Disability that my application was approved on the first try! This rarely happens. Most folks are denied several times and then have to go in front of a judge.

The sobering thought is that I am very ill and will not get better. I will not die from this chronic illness but I have to get used to the idea that I can not do what my brain tells me that it wants to do. I was a very active person. I ran, I rode my bike, I coached youth baseball and travel softball teams for 8 years. I was the person who taught my sons and daughter how to catch and throw and hit. I was the one who would go on the waterslide rides at the amusement parks and walk around for hours and hours at Cedar Point. I planted a big veggie garden every year and tended the crops and made big, beautiful healthy meals for my family. I am mourning the fact that this energy level will never return to me. I have to plan my days around my fatigue level.

My hope now is that this new set of IV medicines will restore some of my energy so that I can enjoy some of my former active lifestyle just in small bursts. I know that if I go for a bike ride, that I will not be able to cook or garden for several days. If I want to go to the fair, or a Cleveland Indians ball game, I will have to use a wheelchair to get around the park.

But there are things I can do to have a full life...It is not at all what I had planned, but there is joy to be found in life,,, just at a much slower pace.

So for today, I am going to Home Depot to buy veggies for my garden. The middle school boy down the street is my personal gardener. He comes and takes care of my heavy lifting needs and my husband does the rest. All I need to do is monitor the garden and every once in a while pull the weeds.

emoticon emoticon

  Member Comments About This Blog Post:

WIO_ALISA 4/2/2013 10:34AM

    Congratulations on getting approval first try. I have heard how difficult that is.

Sounds like you have a great support system. Blessings.

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GODZDESIGN95 4/1/2013 9:43PM

    good for you!!!!!!!!!!!

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HICKOK-HALEY 4/1/2013 9:18PM

    That's great there is a kid in your block that will help out. That seems to be getting rare these days. Having a garden to plan and work in can be so relaxing. A plus right there. I also hope the new meds work better for you. Have you thought of purchasing a two seater bike? You can ride with your Hubby. That way you're not doing all of the work.
Hang in there!! emoticon

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TIME2BLOOM4ME 4/1/2013 8:39PM

    I am really glad you got approved !!!


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LIVINGFREE19 2/9/2012 8:42AM

    I am so glad you got yours right away!
I went to court once and got denied, now I got a lawyer that specializes in disability (and knows MS), so now I think I am on the right track!

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DS9KIE 5/14/2011 11:31PM

    I'm glad your approved and I hope the medicines will start to work for you and you have more energy.

You have a great attitude emoticon

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SACREDAMULET 5/14/2011 7:35AM

    I hope that some of my tips helped with getting SSDI!!! I too got it on my first try. They gave it to me literally 3 months after applying. The SSA gods were smiling on me!!!

That's awesome that you're choosing a healthy lifestyle over being a victim of your illness. I admire your tenacity, and wish you luck in the future!

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JENJENWH 5/13/2011 9:10PM

    Glad you were approved. Sorry you are struggling with a chronic illness.


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PATTK1220 5/13/2011 7:33AM

    So glad to see your application was approved. Like Marcia said, don't overdo it. I love your attitude! It isn't easy to have to adjust to major lifestyle/health changes.


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LIV2RIDE 5/13/2011 6:18AM

    I'm so glad for you! One burden lifted!! My mom always said gardening was therapeutic. I hope you enjoy yours.

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BUELLRIDER 5/13/2011 1:15AM

    It is always nice to have a garden. What veggies did you get? They are always so much better eating then from the grocery store. Now, don't overdo it and take care of yourself. You can always monitor the garden from a swing or chaise-lounge with a big glass of ice water.

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KOKOEK9 5/13/2011 12:28AM

    Hi I am glad to hear that, keep on plugin your blog gave me inspiration. I don't know what is wrong but I am suffering from a severe balance problem and much fatigue, it can be very discouraging. good luck Mike

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IV Therapy Finished....Now we wait.

Tuesday, May 03, 2011

If you have been following my blog, you know that I have been making weekly visits to the Cleveland Clinic for IVs every Friday to try to help with the symptoms of a blood disorder. Well, I am done! My final scheduled IV was last Friday. It took 4 1/2 hours, which was typical but after I was disconnected, the nurse wheeled me down the hall to a big bell, gathered all the available nurses around us and instructed me to read aloud a plaque on the wall and ring the bell three times. I can't remember what the plaque said, something about finishing a tough time in my life and persevering and hoping to never come back and do this again. Then I rang the bell.....

It was touching. I really didn't want to do it, though. It felt embarrassing to me for some reason. But I decided to do it. I believe in the power of ritual and positive thinking. So I made myself ring the damn bell and recite the quote on the plaque. I am glad that I did.

My blood levels on the final day of therapy had dropped, which was disappointing. I was hoping that the drugs were going to start working by now. But for some people the drugs don't start to show a change for 4-9 months. In the meantime I have to take a lot of medicine, with horrible side effects to keep my platelets at a safe level. I was hoping to taper off of the drugs soon. But that is not going to happen until my blood levels start to rise.

So, I just have to wait, eat well and not get sick. I have no immune system right now so getting a virus could set me back.

Great news though... About a month ago, one Friday as I was connected to the IV at the Clinic, I decided I needed a vacation.

So at the end of the month I am going to the beach for a week. I want to sit in a beach chair, under an umbrella and feel the ocean breeze on my skin. My husband, 3 children and spouses are coming too. It will be a lovely family vacation.....

I can hardly wait. It certainly has to be warmer in Myrtle Beach, SC than it is here in Cleveland, Ohio... at the end of May....

emoticon emoticon

  Member Comments About This Blog Post:

BRIGHTSPARK7 5/4/2011 11:27PM

    I'm celebrating with you that your IV treatment is over. How wonderful to honor your intuition to go on vacation and feel the ocean breezes. Enjoy your time away and come back even healthier. Sending healing prayers for your flourishing and wellbeing.

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LIV2RIDE 5/4/2011 9:13PM

    emoticon emoticon emoticon I'm so glad you decided to take a vacation. It's awesome that your family is going to share that time with you. emoticon

I'm glad your IV therapy is over. You will be in my prayers I hope you celebrated that milestone.

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ELINTY 5/3/2011 11:45PM

  I hope you continue to do well with your health my prayers will be with you and have a blast on your vacation you deserve it after all this

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Thursday, April 21, 2011

It has been a long month. When I last blogged I was beginning Lent with trying to give up unhealthy snacks for the 6 weeks between Lent and Easter. I did okay, but struggled along with good and bad days.

Right after I blogged the last time, I became incredibly ill. I had been feeling bad for a few months, I caught a nasty cold that I couldn't shake and with my other illnesses the Dr. was really concerned so he sent me to another specialist.

I saw a Hematologist in early the middle of March. He did a blood test and discovered that my platelet count was dangerously low. He sent me immediately downstairs to the Taussig Cancer Center here in Cleveland for something called an IVIG. It is basically a 5 hour IV of a blood product to boost my platelet level. I did two of these treatments 2 days in a row. It did boost my levels, but they plummeted back down in about a week. So the next step was a bone marrow biopsy and the beginning of another type of longer term IV treatments.

Well the biopsy showed that I have a form of Lymphocyte Proliferate Disorder, called CLL. (Chronic Lymphocytic Leukemia.) I do not have all of the markers but most of them and the Dr. said that this has been smoldering in the background of my illnesses making the other autoimmune stuff I have worse.

No wonder I am so fatigued all of the time, huh? Here I was thinking that my several autoimmune diseases were the culprits.

You know, I knew something else was going on. I could just feel it. I eat such an exemplary diet most of the time. I know for sure that I eat better than 98% of people in America. I eat fruits, veggies, whole grains (90%) of the time, beans and legumes everyday. I eat low fat (my goal is 10% of calories). I don't buy processed junk foods very often even though I keep pretzels in the house, and will have a cookie from the store now and then.

Everyone always talks about the increase in energy that they got when they went vegan and cleaned up their diets, and I am so sad that it didn't work for me. I am always paralyzing fatigued, every minute of every day. I do know that I would be much more ill if I at burgers and fries at every meal, and ate donuts and ice cream. I am doing everything I can to give my body proper nutrition.

The good news is, this IV therapy has a good chance of knocking out the rogue cells that are causing my platelet crashes, night sweats, mouth sores, nose bleeds, and rashes. I have 2 more IV treatments to go and then they say it takes several months for my body to replace the unhealthy bone marrow cells with healthy ones. I am back on high dose prednisone too and my belly and face are getting moon shaped again. So I just don't look in the mirror anymore and I can pretend that I look the same.

Sorry about this blog everyone. I needed to say these things aloud. I feel that my friends (who are wonderful and supportive) don't need to hear me complain about how I feel anymore. I don't want to be that person that people feel sorry for. It is strange to get together with a group of friend and old colleagues from my work and they have so much to talk about. I have been disabled now for 2 years and don't have much to add to their conversations. Because I DON"T DO ANYTHING! ARG!

God Bless you all for listening.... I am going to try to get out of the house today. On the days that I feel the absolute worst. I make myself go for a drive and walk around a store for a few minutes and rest at the food court. So I feel incredibly weak today, so off I go. I will be in horrible pain later, but I need to see the world and move my body around.

  Member Comments About This Blog Post:

GODZDESIGN95 4/1/2013 9:42PM

    OMG I am sorry. praying for you. emoticon

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TIME2BLOOM4ME 4/1/2013 8:40PM

    Hugs. emoticon

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ZAEZAE 5/3/2011 3:27PM

    Thanks for sharing your struggles. I hope things are going better. You've been a positive support to me and I'm so grateful you are here on SP.

Keep feeding yourself the best fuel possible! I envy you!!

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PUG-GIRL 5/2/2011 6:53AM

  I'm glad they were able to give you a diagnosis. I will be thinking of you and praying the IV treatments do the job.

While I understand the frustration you feel at not being able to add to your former co-oworkers conversation, I can say, for my part, you definitely DO SOMETHING! I am only beginning my vegetarian journey and when I scroll through the threads seeking answers, YOU are there giving advice, encouragement and support and for that I emoticon

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DS9KIE 4/28/2011 12:10AM

    sorry your always sooo tiered from your illness, but I'm glad your finding a solution with the IV's emoticon

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BUELLRIDER 4/26/2011 2:18PM

    I was wondering why I haven't seen any activity on the E2 team from you. At least you know why you've been low energized. It sounds like you are handling it with a good attitude. Getting outside is a good idea. It is encouraging that the IV therapy will help. Stay strong (plant strong) and take care. We are here if you need us. emoticon

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SACREDAMULET 4/22/2011 11:17AM

    I'm so sorry to hear about your medical issues. It seems sometimes like for every step forward, we have two (or more) steps back. Sometimes it's the other way around, with two forward and one back.

I'm disabled too, and have been for 5 years. In these 5 years I've tried to work and be "normal", however even though I give it my all my symptoms return. I'm on a good medication combination now and hope for success.

I understand your feelings about how you don't do anything. I feel destined to do nothing; sometimes, I feel like my only social outlets are SP and my husband! Well, it could be far worse.

I hope that treatment helps you. You're in my thoughts.


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TRAVELNISTA 4/21/2011 5:16PM

    emoticon and emoticon

Comment edited on: 4/21/2011 5:16:55 PM

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TRAVELNISTA 4/21/2011 5:15PM

    You are in my prayers. I hope the IVs will do the trick. I admire you from the posts you write that your eating is impeccable. You of all people should not be going through this. emoticon emoticon

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LIV2RIDE 4/21/2011 11:59AM

    Well I guess the good news is that now you finally know what is going on. Hopefully you and your doctor can come up with the very best form of treatment for you and your lifestyle. Being vegan will help (I think) and can only ensure the best for your body. Don't ever apologize for a blog like this. We are all human and have bad days. You are entitled to have a bad day along the way as long as you don't wallow around in it for too long. It's good that you are getting yourself out of the house today. I hope that it is as sunny where you are as it is here. Finally the rain clouds have lifted and the sun is shinning. Peace & Love to you! emoticon

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PRETTYPITHY 4/21/2011 11:59AM

    No need for apologies! We're here to listen. I'm sorry to hear about your illness but glad to hear you are still taking great care of yourself in the face of it all. It is brutal being fatigued all the time and I think you're handling it with strength and bravery. emoticon

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