Saturday, April 30, 2011

Feeling Better

The nausea is gone. Diarrhea is gone. Muscle cramping has decreased. YEAH!

But I had forgotten how easy it was to get my heart rate high enough to cause chest pain on diltiazem. So even though I feel good just sitting around, it is extremely difficult to do anything without getting short of breath and chest pain. It is great to feel good when I am sitting though. :)

A very sad post was on the IA support group board today. A 14 year old girl was diagnosed. She was asking how to deal with the fear of dying. I really don't know how to answer a question like that to a 14 year old. I know that everything feels so much more intense at that age. She is at the point I was about a year ago, and it was devastating to me. Dr. Ford helped me so much - he told me how I was going to feel when I was still in denial. This poor girl goes to a school in Illinois where they don't even have a nurse. She has to administer her own Epipen and call her mother. I don't know many teenagers who could administer their own Epipen. Keep this girl in your prayers - her name is Amber.

Thursday, April 28, 2011

A Day with the Docs

Good one first - Casey's checkup went great. The little guy was moving around like crazy and doing well.

For me - nothing good.

Immunology - I had read about another immunosuppressive drug that had been tried on 6 steroid depended IA patients, with 3 being able to come off steroids completely. It was a study done in 2003. Unfortunately Dr. Krish does not feel; 1) that I am stable enough to try anything experimental, 2) that it will work for me, 3)that the side effects are worth the benefit. He added Allegra to my meds and I am to stop trying to further reduce my steroid dose.

Cardiology - Due to the side effects, I am off Multaq. I am going back on diltiazem. You may wonder why I am going back on a medication that didn't work the first time. 1) My blood pressure did better on it. 2) I felt better overall on it than any other med we have tried for the tachycardia.  We doubled my Lasix dose because of my continued swelling and also doubled my potassium dose. - What next? Pray that for some reason the diltiazem miraculously works this time. Other options - possibly trying other antiarrythmic drugs, but side effects may be a problem. Amiodarone is still an option if I am just not doing well enough on diltiazem.

Overall this means I can expect really no significant changes other than hopefully having less rashes with the addition of Allegra and less swelling with the increased diuretics. Dr. Haddadin says that I may have built a tolerance to loop diuretics because I have been on them for many years. If increasing doses of Lasix doesn't work then he is going to try Demadex.

We made it through the storms with no damage to our trees. It is amazing to drive through Doe Valley. Trees are down everywhere.

Saturday, April 23, 2011

One Year

Today is the one year anniversary of my first hospitalization for anaphylaxis. Things sure have gone down hill from there. I think I could deal with the anaphylaxis if I could just get to a point that I was able to do things for myself again. It is discouraging that a whole year has gone by and I am further from being well than I was then.

Book 11 of 2011 is St. Dale. It was a very entertaining book but if you know nothing about NASCAR I don't think it would be very interesting. It is set in the Southeast with visits to many local racetracks. This was a loan from my sister-in-law who is a huge fan of Sharyn McCrumb.

Thursday, April 21, 2011

Bad Days

Days of nausea and fatigue - when will this end!

I'm too sick to do anything but read, so I finished Book 10 - Served Cold. This was a page turner. I put it down only to go to the bathroom and eat. This was a gift from my friend Kay, who knows Peggy's books are my favorites. I only wish they lasted longer.

Tuesday, April 19, 2011

Nothing New

Just a quick update to let you know nothing has changed. No better. No worse.

I finished book 9 - Chicken Soup for the Soul All in the Family. Some of the stories made me laugh out loud. Thanks Linda Clark for the gift!

Saturday, April 9, 2011

The Enemy We Can't Fight

My brother described my illness as the enemy we can't fight. That is the most accurate description I have heard.

Today is a day when my fingers are drawing into my hands in odd and freaky contortions. My whole body is cramping. I feel my heart beating in my face, and see the pulse of my heart as a shadow in my vision. This is a day when I am trapped. I can't do anything. My hands are shaking. Brushing my hair left me short of breath. 

On days like today, all I have is my friends and family. Knowing that you care gives me what I need to get through days like this and hope for a better day tomorrow.

Saturday, April 2, 2011

April Fool

My body played another April Fool on me last night causing me to have to use Epinephrine again around midnight. I wish it were a joke, but it is true.

What does this mean? Is it the medication change? Am I allergic to Multaq?  Who knows?

We did get some fantastic news today. Epipen now comes in generic! We saved $25! That is over half a tank of gas in the Toyota!

Friday, April 1, 2011

The End of a Long Stretch

I had gone 23 days without having to use an Epipen! I had rashes and itching but was able to stop them with extra prednisone and Benadryl until today. This was the longest I had gone since I started having anaphylaxis last April. I am hopeful that this is a coincidence, but I am worried that it is from having to change one of my preventative medications to start the Multaq. I tried going off that medication in the past with poor results.

I  saw orthopedics yesterday and got an injection of steroids into my hip joint, and it is feeling some better already. I have bursitis. I have had it several times before and getting the injections usually do the trick within a couple of days.

Casey had an ultrasound yesterday and the baby was sucking his thumb. All us going well with the pregnancy.

I want to thank all of those who sent cards and visited me last month. It is so nice to hear from people. Thanks also to those who contributed money - without help we would be in a serious situation. We appreciate all of the kindness so much.