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.
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.
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....
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.
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