Officially an Old Woman

Today I thought of my Granny as Daddy pushed me in a wheelchair through the produce section of Walmart. When Granny was having radiation for her cancer, she became so weak that Aunt Joyce got a wheelchair for her to make it easier to get her where she needed to go. I would sit in Granny's wheelchair and roll around in it. Granny said if I ever had to sit in one it would not be so fun! Once again Granny knew what was true.

This was the first time I let my pride go and rode in a chair except for at the hospital. It isn't fair when your parents have to push your chair. It is not the natural order of things. I cry as I type knowing how low I have gotten.

Today was my cardiology visit, and ... another old woman sign... nitroglycerin pills. I expect to wake up some morning soon with gray hair! My friend Kay says my hair is as pretty as ever, so at least I have one thing going right.  Of course my cardiologist truly believes he can fix all that is wrong and turn me back into the old Cindy Lou. Every doctor I see believes that, and I hope that one of them is right.

I sit and look at gardening supply catalogs and dream of what I will grow next year if I am well. I dream of going to work every morning. I dream of sitting on a beach watching the sun rise. I even dream of being able to cook a meal. Maybe someday...

A Day with Elizabeth

Today was a day where I didn't feel good, but not as bad as usual. I decided to spend the day with my friend Elizabeth Zimmermann. Elizabeth died before I ever knew who she was, but she is one lady I would have loved to have met. Today I reread the Knitter's Almanac. I laugh out loud at Elizabeth's opinionated statements. Today's readings had me chuckling about Grandmother ideas. I love the statement that all Grandmothers know that no daughter-in-law knows how to properly wash wool. I also loved the one about mothers in "this day and age" insist on yarn that can be machine washed and dried. Elizabeth's answer was that soon she supposed that they would make babies that can be machine washed and dried.

I enjoy knitting Elizabeth's patterns, but her books have given me hours of enjoyment in just reading. My friend Louann and I love to pop in one of Elizabeth's DVDs and pick up our knitting. Our husbands shake their heads LOL

A day that could have been a boring, feel bad day was saved by Elizabeth. In my idea of heaven, I will get to sit down and knit for a spell with Elizabeth.

A Good Thanksgiving

We were able to spend Thanksgiving with both girls, making it a very nice holiday. I ate tons, none cooked by me.

We had a very nice family day. It was very tiring for me, but very good all the same.

I spent my Black Friday doing some online Christmas shopping. I was never much of a shopper anyway so I don't miss any of that. I am also working on several hand made gifts as much as I can. I hope that I will be able to finish them on time, but some days it is just not possible to do any crafting.

I have improved some since last weekend, but still have a long way to go. Next week is a busy week - 3 doctor's appointments.

Misconceptions

If you are sick, please wait until you are well to visit. My real friends are afraid of making me sick, but the ones who do make me sick never take the hint. If I never smelled you in the past, you aren't going to make me sick. If you are a fan of highly scented products, you probably will. If you ask me, I promise to tell you the truth.

For an update on how I am - miserable. I am tapering off meds and it is causing flare-ups of symptoms. Diarrhea has always gone along with anaphylaxis episodes, but the past 2 days have been really rough. Even after tapering off the medicine that everyone was certain was causing my rapid heartbeat, it continues to race if I am even slightly active (as in walking to the bathroom). I am very weak, tired and am having terrible cramping in my hands, feet, legs and back.

I am very sick but it doesn't mean you can't make me laugh. Making me laugh is the best thing you can do for me.

Just Too Weak

Sorry I haven't given an update sooner. I am still very weak and tired.

The good news is that my heart condition will not kill me. It may make me very sick but it is not something that kills. The electrical part of my heart is messed up. My doctor said usually some type of trauma or extreme stress causes the heart to set itself to a higher rate. He had not heard of anaphylaxis doing that but he is researching it.

For now I am on some new blood pressure medications. My blood pressure and pulse go up and down with activity, but also as the medicine wears off. It makes me feel really bad.

On the anaphylaxis issue, I am still trying to taper the steroids down at least enough to get my flu and pneumonia shots. I am afraid that I will get the flu. I get a flu shot every year.

I am really looking forward to Thanksgiving. It is one of my favorite holidays.

I'm home and exhausted.

Check for an update tomorrow!

23 Hour Observation

I'm back in the hospital again. They are monitoring my heart. It is a really bad day.

Long Days and Nights

Decreasing my meds has decreased my sleep. Adding hours to my days has left me bored and restless. Activity causes me to be very short of breath, possibly because of the heart disease rather than my medications.

Since Scott has taken on my chores in addition to his, there is never really any time just for us. He is always busy doing something or asleep.

Is the medication adjustment making me feel better? No. The only differences I can tell are less sleep and my resting heart rate is slightly lower. It goes right back up with the lightest activity.

My cousin sent me Seasons 1 and 2 of the Waltons to watch. I still have my Netflix and Ipod. What I would really like is to go mop my kitchen, and go to the grocery store. I want to be normal.

I Hate Medication Changes!

Yesterday I went for my immunology follow-up appointment. As usual, it is time to try and decrease a medication. Last night I took the reduced dose, and this afternoon I have to use epinephrine. I understand the process and that the medications are possibly causing some of my other problems, but it is becoming terrifying to change a dose. Feeling bad is better than being DRT (a rescue squad term for "dead right there"). I really don't want to hear the boys singing "she's going home in a body bag, doo dah, doo dah". My apologies to those who don't appreciate dark humor. Sometimes it is all that gets you through.

Other than changing medicines my appointment was another pep talk. Respect the medicine. It is doing what it is supposed to do.

Maybe I am becoming more cynical, but just one time I would really love to hear just one piece of really good news. One day they will be able to isolate the antibody that triggers my problems. I am selfish and want it to be today. I also realize that I have a very rare disease and the bulk of research money goes toward more common diseases. It may not be during my lifetime that the antibody is isolated.

The Idiopathic Anaphylaxis Support Group has been very helpful. There are other people all over the world that have the same disease and the same feelings that I do. The group shares news of the very latest research, plus all the daily difficulties we experience. Knowing someone understands and feels the same way makes things just a little easier to bear.

Roy's Surgery Went Very Well

He was even able to go home today. That is very good news! Dr. Jones was very positive! Thank God!

Not Appendicitis

Kristen's CT came back fine.

A Really Bad Day

Today is almost as bad as October 27th, minus the chest pain. I can barely make it to the bathroom without completely giving out. I'm ok, but feeling very sick.

We are waiting for CT results on Kristen. She may have appendicitis. No word on Roy's surgery yet.

It is a hard day all around.

Time Change

I keep forgetting that we "fell back" last night. I have already taken my before supper insulin and blood pressure medication. (at least it is a valid excuse for a snack).

I am a creature of habit and a small change throws off my whole routine. Weekends really mess with my usual day. It isn't that anyone does anything to throw me off, but the usual coming and going is out of sync.

I really over did it this morning. Anytime I feel semi-human I want to do everything possible because I don't know when I will feel well enough again.

I have a prayer request also. My mother-in-law's brother Roy has had a 4th recurrance of his bladder cancer. He goes in for surgery on Tuesday. I pray for God to give him peace. He isn't feeling very well now. He and I have the same urologist, and I know Dr. Jones will take excellent care of him. Having watched my Granny die from bladder cancer, I am concerned about his pain. I know all cancer is bad, but the ones that you have gotten up close and personal with always seem worse. Knowing what is to come breaks your heart.

My Granny died 12 years ago tomorrow. It seems like yesterday. There was a relief that she was able to leave her suffering but I miss her so much. She was the last of my grandparents to go. Those last few years were a gift. I often imagine what she would say about the state of the world today and have a good laugh. She was a very opinionated lady. My brother seems to think I am just like her! :)

A Day in the Life

Today is a fairly good day so far. My heart rate was below 100 when I got up the first time for my 5AM medications. I had my snack so that the prednisone didn't eat away my stomach and went back to bed.

I woke up with the "ax in the top of my head" headache at 9. I never had a headache like that before all this stuff started happening to me.

Scott went for a haircut and brought back my favorite Iced Mocha. Since my sister-in-law is planning to come help out this afternoon, I got the bright idea to try and get some clutter out of her way. That resulted in racing heart and shaking like Michael J. Fox.

After a rest I decided to get dressed. Scott will assist with my shower before bed so just washing up required another long rest. I was gasping for breath before I got my pants halfway on and had to lie down. At this point I am so sick that Scott gets me a shirt and socks and finishes dressing me.

If you just see me, you would never realize I am so sick. You would probably think I am just fat and lazy. In reality, I can't even enjoy most of my hobbies. I rarely am able to spin. It takes too much energy. Scrap booking and card making are the same because of the going back and forth to get things. I can knit some of the time, but now that cold weather has hit my joints hurt, plus sometimes it is just too much to try and hold my hands up. My hands are wasting away. They are just bone and skin.

If it were not for my family, I would have to live in an assisted living. I never dreamed how helpless I would be. Friends ask me to come have lunch with them and have no idea the feat they are asking of me. Just to get dressed to go somewhere is an Olympic event for me.

Books and my Ipod are my friends now. I listen to audiobooks and read lots of free digital books from www.gutenburg.org. Amazon.com also has several free books for for their Kindle app. We have a Netflix account which allows me to watch movies and shows instantly. I have caught up on several TV series.

I feel like a pet. I do about the same amount of useful activities as Carmen. I know my husband loves me to tolerate all this.

My mom and dad keep me fed. Daddy comes up twice a day while Scott is at work to be sure I am doing ok and have eaten. Mama makes me all kinds of treats.

It is Saturday afternoon and is everyone's "day off". Scott left for a few hours to visit his dad. Mama is gone to a baby shower and Daddy is catching up on the farm with Mike's help. Maryann will be along in a while to babysit me.

You never realize how hard things like this are mentally until it happens to you. Sitting and staring at dust that you just don't have the energy to clean can annoy you beyond belief. You get so angry with your body and it's inabilty to function properly. Your mind still dreams big.

An Attempt at Explaining my Illness

Scott and I have realized that people still are not able to understand what happens to my body. I will try to explain in the easiest way that I can.

What happens to me is my body fighting something within itself. I am not suffering from a typical allergy that causes problems when you are exposed to something. Something in my body went haywire and it is nothing that I did or that anyone did to me. Yes - if I am exposed to something that I am sensitive to it can cause my body to continue a spiral when my immune system is triggered. For example, you come to visit me in the hospital. You are using scented products that you don't even smell on yourself because you have become accustomed to that scent on you body. That scent may be an irritant to me, which starts my immune system and then can spiral into anaphylaxis for me. That does not mean that your scented hair spray caused me to go into anaphylaxis per say, but it did irritate my body which can trigger a problem. The heart problem may have been brought on by my autoimmune disorder but my heart is not causing my anaphylaxis.

Many of you want to pray for me, which I welcome. Understand that I want to be totally in God's will and ask that you only pray for God's will to be done. I know that I am exactly where God wants me to be. This is all part of his grand plan.

We do feel a need to ask that if you are wearing anything scented that you please not visit. I have been taken off one of the medicines that helped keep my airways open and have become even more sensitive to scents. I would never hurt anyone on purpose but it has become a real problem. If you have an allergy attack that makes your face ache, you probably go take an ibuprofen. I cannot do that. When I get mucus congestion in my sinuses, I can't go take a Sudafed and Mucinex. When I have pain it stresses my body, which raises my blood pressure. Both stressing my body can - once again - trigger my body to go into anaphylaxis.

I can barely comprehend all of this myself and certainly do not expect you to either. On a lighter note, I do not have any problem tolerating body odor! LOL! So feel free to visit me when you think you stink! HA!

Many people ask if there is anything they can do for me. Yes - there is. Pray for my family to have peace with what is happening. It is so much easier for me to be the sick one. I cannot fathom how I would feel if this were happening to one of them. Pray for my doctors and nurses - it is so discouraging when you can't "fix" what is wrong with your patient. There are so many residents and medical students that God has already used my body to teach them. I think that all of us enter the medical profession with the idea that we are going to make people better, but in reality you help people deal with what they are destined to bear. I have met some very special people on this journey. Nurses and doctors have cried with me, prayed with me and laughed with me. My purpose could be to teach them how to show that love to a patient. It is not for any of us to know or question.

Again - I would never hurt anyone on purpose. I love your visits. Just help me stay safe.