Friday, December 31, 2010

Out with the Old

The end of 2010 is not a sad thing for me. This has been the worst year of  my life.

It hasn't been all bad, and I have learned so much, but I am ready for a new beginning.

Goals for 2011:

Read or listen to more books.

Try to do a little more every day to regain my strength.

Have some fun every day.

That isn't too much - hopefully I can accomplish this small list.

Happy New Year!

Monday, December 27, 2010

A Snowy Birthday

I finally see some blue sky outside after 2 days of snow. There is 8-10 inches of snow here and my driveway is a mess, so we have postponed my birthday party.

As for my ongoing drama - I dropped a block of cheese on my foot yesterday and I think it is broken. It is a lovely shade of blue across the metatarsals, swollen, and aching. I made through Christmas without a cast boot this year at least - I had one on the past 2 years. Dr. Hare is back in the office tomorrow so she will get me fixed up. 

Other than the foot thing, I am enjoying a peaceful birthday. Scott brought me some biscotti with real sugar in it. I love biscotti! It is ok to cheat on your birthday - right??? Off to fix a cup of herbal tea and enjoy.

Saturday, December 25, 2010

Sights and Scents of Christmas

I sit in my recliner watching the snow fall outside, with the smell of turkey deep frying outside drifting indoors. It is such a heavenly scent and sight. My little dog Carmen is curled up on top of the sofa where heat comes up from the vent. All is peaceful and quiet.

I can't imagine God giving us a more beautiful day. Soon we will be off to my brother's house for an afternoon of gluttony and merriment. I can't wait to see what heavenly treats my sister-in-law has made this year.

Three of my uncles are spending thier first Christmas in Heaven today. I have sweet memories of them and envy the birthday celebration that they are having. Rest in Peace C.L. Edwards, Harold Matheson, and Willis Walker. You are missed.

Friday, December 24, 2010

Merry Christmas

Each day I hope to be well, but so far it just hasn't happened. I push myself to do more, and I have gained a baby step, but not any significant progress. Nitroglycerin is now a better friend than Epipen.

Even on my high prednisone dose I have had a couple of rashes but at least there was no swelling to block my airways.

Despite my illness, I am very blessed. So few people have a loving and kind family who is willing to give so much of themselves. I could not have survived without the help of my family and friends. Every thing that each of you has done means so much. Things may seem small to you, but when it is a major undertaking to do anything, even the smallest thing is such a blessing.

I wish to be well for Christmas, but if it cannot be I know that God has a reason for my illness. I have learned to trust him for all my needs.

Wishing all of  you a very happy Christmas.

Thursday, December 16, 2010

It's a Boy!

My little grandson turned his butt up and spread his legs! He is just shy of 3 inches long. In one picture he is holding up his left fist. He is already beautiful! He also has his Mimi's big belly. I will post the ultrasound pictures as soon as I get a copy.

This baby gave me a reason to live. I was ready to stop fighting until I found out about him. Now I fight to get better so I can rock him, bathe him, and hopefully play in the mud with him someday.

Doctors Visits:

Cardiology - Pulse is still too fast. He increased my medication to maximum dose. I am to push myself with exercise to see if I can build any stamina. (Already doing that!) ;(

Immunology - Dr Krish is leaving the country. Stress tends to bring on anaphylaxis in patients like me, so my prednisone is now at an all time high dose through the holidays, especially with the stress of knowing he is in India. I can be in contact with him by email, but it is still stressful knowing he is gone.  My kidney function is too  bad for any of the other drugs, so we have to use prednisone and Plaquenil. After the holidays and Dr. Krish is back in country we will try to bump my prednisone back down to where I am currently. He says Plaquenil will take 3 months to build up to a point that we can safely try to drop the prednisone further.

Dr. Krish stocked me up with emergency antibiotics and Tamiflu, and my Internal Medicine doctors are aware, so if I get into urgent trouble they can help. I did get my flu shot, but Dr. Krish says it will only be about 30% effective for me.

I am also being referred to Nephrology to see if they can improve my kidney function. This is different from my Urologist. Nephrology deals with the filtering system - urology deals with the drain system. Hopefully they can do something to improve my function or at least stop it from getting worse.

All Christmas knitting has come to a halt - sorry to those who will be cheated. I'm off to cast on something for our little boy!

Monday, December 13, 2010

So Much for Feeling Good

Yuck! I woke up this morning with a stuffy runny nose, watering eyes and scratchy throat. I don't know if it is a cold or an allergy attack bit it is no fun.

We have about 8 inches of snow on the ground with more coming down. I'm spending the day with warm drinks and watching Food Network.

Sunday, December 12, 2010

Pretty Good Weekend

As long as I keep myself parked in a chair, I can forget that I am sick. As soon as I move my heart races again. I'm not complaining. I can sit and knit. I sat in the truck and went across the two mountains to visit Casey. Being able to feel well sitting around is a big improvement.

Other than one episode of a rash, there has been no anaphylaxis in 10 days! Hopefully things are finally changing in a positive way.

Snow is pouring down outside. I just talked to my brother who was going to put chains on the fire engine so he could go in the snow if someone has a fire.

We got to tour Casey's soon to be new home. The area is beautiful and will be a paradise in the summer. The house is very roomy, with a nice big kitchen. Scott and I loved it. It was warm and cozy with plenty of room for the growing family. There is a big yard with a small creek beside the house, and it joins the National Forest.

Casey's tummy looks like she has a cabbage under her shirt - not a big one but she does look pregnant. She is changing - she is really starting to sound like someone's mother talking. :)

Thursday, December 9, 2010

More of the Same

I did better for a few days with the medication changes but I am back to having a racing heart even sitting still. I am thankful for the nitroglycerin tablets which take the chest pain away, but I still get very short of breath and weak.

Unfortunately I have no good news. My kidney function has gotten a touch worse and is being watched closely. I don't feel very well.

Santa's workshop is not making very much progress. I think this elf may need to be fired. I am hopeful that I will have enough good days before Christmas to finish a couple of very special gifts but I know the recipients will understand if I cannot get them done. This is a busy time for me normally, making cards, treats and knitted gifts. I am truly thankful for all the great years when I could work all day and craft half the night. This is a year of change.

Sunday, December 5, 2010

Before and Now

The first picture is a few weeks before the first anaphylaxis on 4-23-10. The second is Thanksgiving Day. The medications are taking a toll with the horrible side effects. The only option other than the drugs are death, so it is an easy choice to stay on the drugs.

Today I am so swollen that I cannot get shoes on my feet at all. I have no energy and no appetite. The Gastrocrom that I started on Friday is helping some, but it takes time to build up. The same is true with Plaquenil.

There is about 2 1/2 inches of snow on the ground with flurries still falling. It is a good day to just sit and watch the snow.

Saturday, December 4, 2010

Saturday with My Baby Girl

Casey came over and spent the day yesterday. She is glowing. She took me to the hospital to get labs and then home for the day. It was nice just to spend the day chatting.

Friday, December 3, 2010

21 Medications

Today my 21st prescription medicine was called in to the pharmacy. That does not count my PICC line supplies. I really should be full from just medicines without having to eat food.

Last night I had another anaphylaxis - this one quite a bit worse than routine with some new symptoms. A bit scary!

I have a had a pretty good day today. I have been up most of the day. I have made a few cards and did several loads of laundry. I love a good day! They are so rare that they are precious gifts. I wonder if I can manage 2 in a row??

Thursday, December 2, 2010

Two Steps Back

Remember the old saying - take 1 step forward and 2 steps back. I feel that is what I am doing. Today was my Immunology appointment.

I wanted to try to get in the Xolair clinical trials for Idiopathic Anaphylaxis but I have to be totally off prednisone to be considered. Dr. Krish feels that I am prednisone dependent and probably will never get below 20 mg per day. He is adding Plaquenil to my drug regime and hopes this will help me lower my prednisone dose a little bit more. I am also going to start taking Gastrocrom for the gastrointestinal symptoms that I get with anaphylaxis.

Remember the dreaded doxepin that everyone that I thought was the cause of my tachycardia???? Remember that no one would listen to me when I said it was not the problem??? I start back on it tonight. LOL When will doctors ever learn to LISTEN to the patient. I was on doxepin for months before the tachycardia started! Doxepin is classified as an antidepressant, but it has H1 and H2 blocking properties, anticholenergic properties (for my tummy) and helps me sleep better. I really felt no big side effects from it other than drowsiness, and it isn't a lot better off it because I was still taking huge doses of Benadryl around the clock. If it works, don't fix it. The only down side to doxepin that I have is that it does increase my appetite. Dr. Krish said I was too fat today. NO JOKE - I have a mirror! I have averaged gaining 1 pound per day this week and I have not been eating very much.

Plaquenil is known to cause problems with the eyes, but since I checked out very well with the Opthalmologist a few months ago we are going to give it a try. It has less side effects than some of the more commonly used drugs to control IA.

Our long term goal is to get me to no more than 1 anaphylaxis per month. Does anyone know someone who would hire a person who might go into anaphylaxis once a month???? If I were an employer I would not. You cannot be very dependable with the dark cloud of IA following you around. Tomorrow I will call my Long term disability case worker and run that by her.

I am having a PVT with LV DLCO with and without on Tuesday. That is a fancy PFT with an inhaled contrast. They are looking for some lung problem that will explain why I can't breath. Cardiology thinks I have pulmonary hypertension. I have a message to call them also, probably to be scheduled for a right heart cath or a Swan-Ganz catheter. It is put in through a vein in my thigh or neck and ran through my heart into the artery going to my lungs. They can measure my blood pressure there to see if that is the problem. My internal med doc told me yesterday that they might be doing that test it is the best test to determine if pulmonary hypertension is the problem.

As for everyday life, such as it is, I haven't felt like doing anything this week. No knitting, not even TV. Cuddling up with Carmen is about all I can handle this week. It is odd but I actually feel better mentally since Dr. Krish is not so upbeat and positive. I am a total honesty kind of girl. If this is as good as it gets, tell me. I will deal with it and adapt. When people tell me I am going to fully recover and I feel so bad I can only take 3 dishes out of the dishwasher at one time before resting, I feel frustrated and angry with myself. Please just give me plain simple truth! If it gets better than expected HURRAY! If not then it is no surprise and my life will go on as "normal" for me. I've seen this happen to patients during my 21 years of nursing. People with incurable cancers think they are going to get well because doctors don't give them plain and simple truth. My favorite memory of a truthful doctor is Buddy Clayton. He is a Family Practice doctor who now works in Urgent Care. I worked with him for several years. Most patients loved him, some hated him. If his patient was on the downward path he just sat down and asked if they were right with God. If they said no, he told them they had better get that way because they were going to meet him soon. If they said yes, he said good. That is what I want! Tell me!

Wednesday, December 1, 2010

Oops I did it again!

19 days with no anaphylaxis, but IT"S BACK!

I saw my Internal Medicine doc today and told him I wanted my flu and pneumonia shots because I was finally down to a low enough dose of steroid to get them. He wanted me to wait and have Immunology give it tomorrow. UGH!

At least they can't say the flu shot caused the problem.  Such is the life of a person with Idiopathic Anaphylaxis.

Yesterday my coworkers from Blue Ridge Ear, Nose and Throat sent me the most beautiful card with the kindest wishes and a hand full of cash to pay on my bills. They are the most incredible group of people I have ever met in my life. Not everyone fits there - I don't why - but when you stay for more than a year it becomes just like your family.  I felt that way long before I was there a year, but it does take some people a touch longer to mesh. They are my brothers and sisters - we are a family, a church and there for each other. I thought that would go away when I had been gone for a few months, but they reminded me that I am still part of them. I love them all so much.

I had another big adventure today. Scott and I went to Food City. He pushed me in a wheelchair of course, but I did get to go to the grocery store. I am so easily amused.

As for how I am doing - the shortness of breath is getting worse. It takes even less activity than before to set it off. A trip to the  bathroom is about the max before shortness of breath sets in. The docs are going to pull out my echocardiogram films and review them again. They are now suspecting pulmonary hypertension in addition to the other problems. I looked it up and the symptoms fit. We will wait and see.

In 2 weeks we find out if we are having 1 or 2 grand babies. There are twins on both sides so it is a possibility. Casey's belly is growing fast. We are having lots of fun making up names - all are vetoed by the parents. LOL

Monday, November 29, 2010

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...

Saturday, November 27, 2010

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.

Friday, November 26, 2010

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.

Monday, November 22, 2010


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.

Friday, November 19, 2010

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.

Monday, November 15, 2010

23 Hour Observation

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

Sunday, November 14, 2010

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.

Thursday, November 11, 2010

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.

Tuesday, November 9, 2010

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.

Sunday, November 7, 2010

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! :)

Saturday, November 6, 2010

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 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.

Tuesday, November 2, 2010

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.

Sunday, October 31, 2010

More of the Same

It seems I have gone back to exactly the way I was a few days ago, only now there is no pain with it. The only way my heart doesn't race it to stay very still. If I don't move around I can keep it at about 100 beats per min. I'm not obsessed with it; if it gets up to 115 I feel it in my head and my ears.

I tried breaking my new med in half and taking half at breakfast and half at lunch. It also changed nothing, but did let my blood pressure go high again.

Not much else is going on up here on the knob. Most of the leaves are off the trees so it is easier to see the squirrels. Louann is spending the day with me tomorrow so I know we will find something to laugh about - no matter how bad things get we can always find something positive in it.

Saturday, October 30, 2010

Good Morning World

I feel so much more like me. When Scott and I were filling my medicine trays last night we saw how messed up they had my medication at the hospital. My body went into rebellion.

The hospital only carries 1 drug out of a class. Ex: Protonix, Nexium, Kappidex, Prilsec, Aciohex ... That is good in theory, but in real life one medication doesn't always work as well as the other. Basically the only medications identical to my routine were Benadryl and Prednisone. With someone like me, small differences make a big difference.

I slept like a log last night. This morning I feel much better than in the hospital.

Coming home with the PICC line has been a challenge. It is hard to track down all the supplies you need to care for something like this. Multiple trips to the local pharmacy that carries home health supplies have already been made, and Scott will have to go back today to get the chlorhexadine impregnated disc and stat lock for my dressing change. Sometimes living so far out from big cities is a challenge.

I have finished my early morning snack with my meds and am going back for another nap!

Friday, October 29, 2010

I'm Home

My heart is racing, I am freezing, I'm dizzy, and oh so tired. No chest pain!

This is all I can do for now.

Thursday, October 28, 2010

Wide Awake Again

I had about 2 hours of sleep last night and just woke up after that much tonight. My arm is sore from the PIC line placement now that the numbing has worn off.

Radiology cane in and did a chest X-ray to rule out pneumonia. I had coughed a little but didn't realize my lungs had anything going on. My oxygen saturation was a little low, but my blood pressure and pulse were fantastic. No fever either. ????

Right now I really want to go home. When people are here with me it isn't bad but when everybody goes home and Scott goes to sleep this is the lonliest place on earth. At home Carmen stays with me all night.

I'm looking forward to morning. Louann is bringing me breakfast. We have both been sick so we haven't seen each other since June or July. We are so much alike we could have been twins separated at birth.

Why is there nothing on a TV with 120 channels???? Scott says watch TV but at home I watch Netflix and always have what I want to see. There really isn't anything but garbage on regular TV anymore. Are people really watching this stuff???? I want to see The Waltons

Correction. PIC line is in

We opted to go ahead with the line just for emergency meds and blood draws. It was super to have Dr. Ford right here to advise me.

The echocardiogram shows my heart pumping well. I am on a nitrate for angina to open up my small cardiac vessels and an ARC to lower my blood pressure. I will be wearing a Cardiotex monitor for 21 days - 24/7. My heart will be monitored over the internet and my cardiologists can do med changes with me comfy at home.

We don't know what started the heart issues but we do think that the oral albuterol that I was taking was making this worse.

I had lots of labs yesterday morning that aren't back yet. Hopefully we will have news from those next week.

I feel super after they give me happy juice but when it wears off I go back to my normal yucky state minus the palpitations. I am still a challenging patient. I will update here as often as I can but will be here at least until morning.

I have told everyone that I am getting addicted to all this attention. Just joking, but it is nice to have people to talk with all day.

I will feel ok until my Versed and phenergan wear off. I will post more news as I can.

Out of cath lab

I avoided the PIC line. A Mtn. City girl popped an IV right in.

My large coronary arteries are completely clear. Small ones may be causing pain. Docs still bickering over drugs. I still have to go for an echo but I'm doing great.

Rise and Shine

I have had my 2 hours of sleep, my morning EKG and labs. Wake up docs so we can get on with this show. I'm ready for my coffee!

Wednesday, October 27, 2010

First Triponin levels elevated

This is a sign that something cardiac is happening.

I had a rash that lasted for just a few minutes and faded away. Everything is going well so far.

Sleep well everyone!

My Luxury Penthouse Suite

Tonight I am writing from the 7th floor of Johnson City Medical Center. I had an extravagant ride across the street in a Washington County EMS ambulance.

I was originally scheduled for a cardiac cath for Tuesday, but I became unstable in the few hours between my cardiology appointment and my immunology appointment. Everything was moved up, but because contrast can trigger anaphylaxis, there was a great deal of discussion put in on what contrast and pain meds would be used. They found the most hypoallergenic contrast that is the least toxic for my kidneys and set the schedule for 8 am tomorrow.


No one can get an IV large enough to handle the contrast for the cath.


I go early in the morning to have a PIC line inserted before they can do a cath.

Hopefully I will have something repairable so that tomorrow I will be my normal fidgety self! Worse case senario is that nothing is wrong with my heart and all of this is part of my autoimmune disorder. I know it sounds weird to hope something is wrong with your heart, but that is fixable. Anything that can be fixed is good at this point.

I started my two new cardiac drugs here tonight so that if something goes wrong it can be fixed. It is in a small way comforting to have help just outside my door.

And for good news....

I am going to be a grandmother!

I have to get out of this bed! I have to prepare for spoiling my grandchild just as my grandparents spoiled me. This is going to be one little spoiled child. I have named it Guha after my immunologist. Casey isn't impressed but I have a feeling this child will be Guha for the rest of my life. :)

I must get in a nap before my 1AM triponin blood draw.

Say a prayer for God's will to be done and for God to bless my poor internist who has already been called 5 times about me since my admission.

Check back for updates tomorrow.

I do have a pediatric size IV cath in place for emergency drugs. I had so many nurses around my bed I felt like a queen on my throne with a court around me. It took those poor souls hours to get enough blood for my labs and to get an access for emergency meds. They have all been so kind.

Obvoously my cardiology appointment did not go well. I adore my cardiologist. He is the kindest man.

Tuesday, October 26, 2010

Another Bad Day

Two more episodes today. I am totally wiped out.

A Big Scary Night

Last night was one of the worst episodes I have had in a few weeks. The difficulty swallowing lasted for hours.

What does this mean? I really don't know. I have no idea if this is because of the decrease in Prednisone or if I exposed myself to some trigger yesterday. Since my days are pretty much the same, I really don't see how I was exposed to anything new.

This morning is better - I still have lots of mucus and my throat still feels funny, but otherwise I think I will be ok. I will be staying close to my friend, Mr. Epipen, today.

Sunday, October 24, 2010

The Great Sock Reinforcement Experiment

About a year ago I made a pair of socks from 100% merino yarn. I had read different opinions on reinforcing the heels and toes with nylon thread. I decided to do a pair each way and see what happened. I wore these socks at random, not having a certain sock for a certain foot.

The answer is:

Don't reinforce. The wool wore away on the toe of the reinforced sock. The other is fine. The nylon did make it easier to darn the sock, but I would rather have them last longer on their own. (Yes, I do darn my socks!)

On the health issues -

It has been a hard weekend. I have had swollen red joints and have not been able to knit or spin. I am not allowed to take ibuprofen so I have had no way to get any relief other than my parrafin bath and heating pad. I've had to use my nebulizer some, and have had to use several doses of insulin.

Those who know me well know that it is torture for me to not be able to be doing something with my hands. Carmen and I have napped off and on, but it still makes for a dull life with no action for the hands.

Scott has been cleaning out the garage so that the cars will fit in there and the door will close. Hopefully that will keep the house a little warmer this winter.

Thursday, October 21, 2010

More of the Same

Today I had another Immunology appointment. Some small changes were made - changing to less expensive drugs mainly. I get to decrease my Prednisone by 10 mg every 4th day.

I had abnormal labs but those labs don't tell us what is wrong, just that something is. My kidney function is low. I am iron deficient. I have a very high sedimentation rate and my antibodies were high.

My best scenario is to be able to get off prednisone and start the cyclosporin. As of right now, my kidney function isn't good enough. I also have to slowly taper off prednisone if possible. Some people with idiopathic anaphylaxis are steroid dependent and can't stop them.

Dr. Krishnaswamy is repeating all my previous labs and doing more along with a complete kidney work-up.

Next week I see a cardiologist to see if they can determine why I am having the episodes of rapid pulse and high blood pressures.

We ate lunch at Pizza Hut. I wasn't thrilled with the food today. Hopefully I am losing my appetite!

Tomorrow is the first day of the Southeast Animal Fiber Fair. Louann and I had so much fun last year. Neither of us are healthy enough to make the trip this year, but God willing we will be there next year with all of our fiber friends. Maybe next year I can convince Scott that I need an angora rabbit.

Saturday, October 16, 2010

A Change of Scenery

Today I actually left the house for something other than a doctor's appointment or a funeral. I went with Scott to spend the day with his dad.

We had a good day and before we left we even had Elmer playing his guitar a little bit. He seemed to really enjoy the company. It was also good for me to leave my nest for a little while.

Thursday, October 14, 2010

More of the Same

This morning I woke up to another rash. Today has been a day of racing heartbeat and shaking. Hopefully tomorrow will be a better day!

Tuesday, October 12, 2010

New Things to Think About

Today I saw one of my immunologists. I suppose if you have more than one immunologist you should be bright enough to know that is not a good sign. Both my immunologists met together and went over my case. The last round of tests also gave no answers so we are very near the "idiopathic" diagnosis.

Dr. Kazmier told me to start thinking about using " cyclosporine ". This is an immunosuppresive drug used for transplant patients. It will keep me alive, but with serious possible side effects. These side effects may possibly be worse than the side effects I am currently having from my current drug regime.

How do people decide how far they want to go to assure that they stay alive? Did God give us the science and knowledge to create these treatments, or is it against God's will? How much suffering are people willing to endure to stay alive, and is it worth it??? The medical answer is always "there is a chance you might get better".

I have time to think - time is one thing I have.

Friday, October 8, 2010

What is going on???

My body is in rebellion. No rashes, but I get very hot, my heart races, I start shaking,sweating and I get nauseated. What the heck is this??? I'm so tired of all these little ailments. I have things I want to do!

Wednesday, October 6, 2010

Not Many Changes

Nothing out of my ordinary has been going on for the past few days. No news is good news.

I have been completeing lots of forms for disability, and sending corrections to hospitals that cannot seem to get my insurance information correct.

I finally turned the heat on today. I either had to have heat or wear a hat indoors. It was only 64 in the house at lunch time.

Saturday, October 2, 2010

Mirror, Mirror on the Wall

Prednisone has many side effects. Today I looked in the mirror and saw a classic "moon face". Prednisone causes a redistribution of fat, mainly to the face, abdomen and upper back. It also causes fluid retention concentrating in the head.

This is not my face but I do have the same shape now. I have avoided looking in the mirror as much as possible but today Scott asked me to go to a funeral with him. In order to try to not embarrass him, I was forced to look in the mirror to get ready. Somehow prednisone side effects have crept up on me without my realizing it had happened. You can't see the lady's eyes, but I have bags under mine that are a nice shade of blue

When does all this end? Is the treatment worse than the disease?? The mood swings, shaking, sweating... All this on top of the zombie like state that comes with all the histamine blockers.

On a more positive note - I received a letter from Congressman Phil Roe notifying me that my application is in Nashville with the Disability Determination Board. I don't know anyone who would want me to be their nurse in this state, so I am hopeful that I will get a temporary determination. As we drove down Main Street today, I realized that I can no longer remember what stores were in the empty buildings. I remember what was there in the 70s but not what was there last. People who don't know me well may not notice a difference, but it is certainly scary to me.

Friday, October 1, 2010

Little Angels

Today had been a terrible day emotionally. Days off of steroids are hard, but today had been particularly trying with abdominal pain and GI upset. Some days are just bad.

I had been a bit weepy until I checked

Those little angels made my day. The Mastins have been through so many painful events and they still care about others, sharing their joy and their pain. Seeing the twins posed in their little hats brought my first smile of the day. Thanks Neil and Bekka for sharing your joy.

Thursday, September 30, 2010

Sleepy Time

Starting yesterday, my steroid dose was cut in half. Now I am back to sleeping all the time. Even at half the dose I am still on more than double what I was taking before seeing Dr. Krishnaswamy.

My hands still shake, I am still very hungry, but so far no rashes or shortness of breath. Yesterday I went ahead and slept most of the day. Today I have fought it, and have managed to keep myself awake. So far I have been up for 8 hours.

The leaves outside my window have started turning golden yellow. I love watching the colors change.

Tuesday, September 28, 2010

A bad day yesterday.

No rashes, no shortness of breath, but a very fast heartbeat that I could feel pounding even in my feet. My pulse was running 110-120 most of the day and I was shaking like a leaf in the wind.

Today is better. My mom and I both had appointments in Johnson City today. I went to my Allergy office and she went to the Eye surgery center. She is having pain and watering in her eye and blurred vision, but we expect that to be better very soon. Pray for her to be able to see well again!

Today is our wedding anniversary. It is an unusual one - we usually try to celebrate by going out of town, but this year will be just a quiet night at home.

I haven't been able to get much information from my disability insurance - they are waiting for my physicians to send in paperwork. We are trusting God to provide for our needs, and so far he had done a super job of that! It is very hard for a person who needs to be in control of everything to let go and live on faith, but I have developed a peace that I never had in the past. My favorite verse was always "consider the lilies" - now I can say it absolutely is the truth.

I know my grammar is most likely driving some of you insane - sorry. Right now I am just putting out my thoughts and feelings with no attempt at proper grammar. Maybe I can get a volunteer editor??? (Hint - hint: to the cousin who is studying to teach).

Luke 12:27
New American Standard Bible (©1995)
"Consider the lilies, how they grow: they neither toil nor spin; but I tell you, not even Solomon in all his glory clothed himself like one of these.

King James Bible
Consider the lilies how they grow: they toil not, they spin not; and yet I say unto you, that Solomon in all his glory was not arrayed like one of these.

Sunday, September 26, 2010

Finally Fall

I really enjoyed the nice cool air today. It was nice to go outside and feel autumn in the air.

Today had been a reasonably good day, which gives me hope that this new regime of medications just might work. I still have tremors and am very tired, but I made it through a day with no itching or rashes.

Saturday, September 25, 2010

Yesterday was a long day.

Two trips to Johnson City was a bit much. The early morning eye exam went well.

I was back home for about 4 hours then back to Johnson City to the sleep lab. I had no idea how many wires were going to be attached to me. The goop they use to glue the wires to your head is similar to a heavy build up of lanolin in a fleece. Washing my hair the same way I wash fleece did the trick!

I have another sleep lab appointment next month, and I am going to go with dirty hair next time! Why bother washing in advance to be greased. LOL

Thursday, September 23, 2010

Rough Day

In spite of my tripled steroid dose, I have had 2 of my episodes today. The first one was only a rash on my face, but the second was a bit scary.

After using my nebulizer and extra Benadryl I believe the danger is over, but I am too shaky and weak to do anything more than TV or reading.

Pray for a better day tomorrow!

Wednesday, September 22, 2010

Is it Idiopathic?

If no other diagnosis can be made, I will be diagnosed with idiopathic urticaria (rash) or idiopathic angioedema, or idiopathic anaphylaxis. What does that mean?

Idiopathic is the fancy medical word for "we don't know." Idiopathic anaphylaxis first was described in 1978. It refers to unexplained anaphylaxis that implies a risk for death whether by shock or upper or lower airway obstruction. Most episodes of anaphylaxis are not fatal. Anaphylaxis can also be non immunologic - meaning it has nothing to do with allergies. 25% of anaphylaxis are from unidentified causes.

What this means for me is that I will be tested for every possible cause and if all those tests are normal, then I am labeled as Idiopathic.

Not having a "diagnosis" makes me feel crazy. When someone asks what is wrong and you say they can't find the reason, people really look at you like you are psychologically impaired.

Having to file papers for disability is devastating. I am the person who never wants to take off a day because I am sick - I have went to work with IV fluids running in my hand. All the little comments people make about keeping up the deadbeats becomes personal. I don't want to need help! I want to be well.

Scott and I have taken a trip every year for our anniversary. This year we are going to visit ETSU Internal Medicine Associates. I can't imagine being more than a couple of hours away from the physicians who know my situation and how to treat me.

Being chronically ill is devastating to your self esteem. It makes you feel useless to society and your family. You feel dependent on someone for everything. I have been shopping one time since July 22nd. My mom took me to Michael's to pick up some of my snazzy reading glasses and to Walmart to get some toiletries. Every bite of food I put in my mouth is food that someone else brought into the house. I can't use the stove when no one else is at home because I forget about it and cause fires. Scott checks every email I send, every check I write, every bill I pay online, because we can't tell sometimes if I am really coherent. I might talk to someone and not remember. When I come out of a doctor's appointment, all my paperwork goes to whomever drove me there because I will lose it. I will forget that I got a new prescription.

My knitting has become a new adventure. I was working on a simple shawl. Sometimes Scott goes to bed before me and I sit up and watch TV or knit. I picked the shawl up the next day and I had dropped about 1/3 of my stitches! It was the biggest knitting disaster I have ever seen!

Scrap booking and card making give me some good laughs too. I have things so crooked. The problem is that at the time I am doing these things I have no idea that they aren't perfect.

This is enough of my crazy tale for tonight - it is almost time for another medication dose and another few hours of adventure.

Until tomorrow - live each day as if it were your last!