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