High Hopes

Today I start on an antiarrythmia drug, Multaq, for my heart. This is a slightly safer form of amiodarone that I talked about 2 weeks ago. This drug can be started at home. It may take about a week to work. If it works and I don't get bad side effects I should be feeling better next week.

The downside is that I am going to have to go off one of the medicines I take for anaphylaxis prevention.

Here is to hoping for the best!

Election Day

It is election day in Mountain City. My uncle Willis Walker intended to run for mayor. He was a good and honest man, and he would have had my vote. I didn't always agree with him - actually it was maybe half - but I do know he was honest and he did what he thought was best. Today I voted for the candidates I knew he would want me to support. I voted for the candidate who is honest and fair.

Today is an achy day - it might be the weather - it might be the disease or the drugs - I don't really care what causes  it or why anymore - it sucks. There are so many things I should be doing but just getting into the high school to vote wore me completely out. There is nothing I wouldn't do to be better.

Kristen asked me to read a book - Number the Stars by Lora Loway. I was blown away by how good this young reader book is. It is about two families during World War II in Copenhagen. It is really amazing. It was my 9th book for 2011.

The Rodney Dangerfield of Rare Diseases

I just love this blog post written by Candace on the IA support group. It is so true! http://iainfoctr.com/blog/2011/02/27/the-rodney-dangerfield-of-rare-disea


Our disease does things to our bodies that we can't explain. The drugs we take to stay alive destroy our bodies. How many people who know me had ever heard of this disease before I was diagnosed. I worked in health care for over 20 years and I certainly hadn't heard of it, and many of my doctors have admitted that they had not either. Outside of the support group, very few people comprehend how miserable we may feel on a certain day, and that there is no rhyme or reason as to why it is worse one day than another. Misery loves company. I am so thankful for the support group.

Casey and Jeremiah were married on Sunday in a private ceremony. "Jdub" is a trooper. The second time I met him he was visiting me in a hospital room, bringing me carry out from Outback. He knows the way to Mama's heart. LOL    We welcome him to the family with open arms. Casey wasn't the only one who fell for him fast. He is just like my own child.

For me medically, things are about the same. With the changes in my medicines I had some rough days until we got the doses adjusted.  I am now back to my baseline normal. My feet are swollen but at least I don't have pitting edema up to my knees and my heart rate is back down to around 100 at rest. I have been feeling really bad - tired, aching, chest pain - normal for me but a little worse than average. Next week I go back to cardiology and to orthopedics. I am also having a DEXA scan to see if my osteopenia is getting worse. We expect that it is since I have been on prednisone for nearly a year and off hormones for that long. I really don't know that anything can be done if it is worse - we know I can't go off steroids.

Tomorrow will be a day out of the house for me. I have fasting labs, then we are going to see Casey, pick up Kristen, and then home for Scott to spend the weekend smoking pork barbecue. My mom is making red slaw to go with the pork. I sure hope my cardiologist doesn't read my blog - I am going to have a fat and cholesterol binge. I am also going to have some cake made by my sister-in-law. I don't know if she adds some secret ingredient, but her cakes are the best.

A Very Difficult Day

There are things that I have not been sharing. Scary things.

I have been having episodes of "waking up" having no idea how or when I got somewhere or why I am doing what I am doing. Last Saturday I was in the kitchen counting silverware! ????  I also have times when I try to write but what ends up on paper looks like a 2 year old scribbling. I type texts but the are jumbled letters that make no sense.  We were reassured today that I do not have Alzheimer's Disease even though I have been convinced that this is January. Dr. Krishnaswamy thinks these things are related to my migraine headaches and partially to my dear friend prednisone. I must write a poem someday in honor (or horror) of dear prednisone - the drug that keeps me alive but sometimes make me question if I still want to be.

I shake pretty much constantly now. The prednisone is weakening all my muscles. My father-in-law had already told me that since he has been taking it much longer than I, but I chose to ignore him. I have developed that special hearing that patients get - you only hear what you want to hear.

As for cardiology - I have had a long cry.  My legs and feet are swollen so badly. Skin is peeling off them in sheets. My heart still races, I still get short of breath, and everything is just getting worse instead of better. Dr. Haddadin has decided to try a different drug in the calcium channel blocker class just to see if a different one might work a little bit better. If this drug doesn't work, things look grim. The last drug we are going to try is amiodarone. It has serious side effects and will be the last resort before invasive measures. I asked Dr. Haddadin if this drug wasn't worse than the ablation and pacemaker placement but he thinks it is not.  Here is a link to the side effects. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000870/  He said if I were 86 he would not hesitate to use this drug but it is not a drug you give to someone who is 46.

So life goes on and God sends blessings. I came home to find the most beautiful card in the mail with a gift that I know was given from the heart. I won't disclose the names of the couple who sent it, but they are true angels. It seems every time I am ready to give up God sends someone like them to give me the will to fight. This particular family has been such a blessing in my life.

Tomorrow, if I am up to doing it, I will start on my Social Security Disability appeal. The Idiopathic Anaphylaxis support group has been a huge help with making me feel like I am not alone in this. Someone pointed out that they may not even know what IA is. I am going to send every article I can print about the disease along with all the medical documentation. I have to write a hardship letter asking to be allowed to see a doctor because of the possibility of getting exposed to a trigger if I have to go to a hearing. You can also request a private hearing if I understand correctly. Most everyone on the support group was approved on the 2nd or 3rd appeal.

I am trying to remember that tomorrow is St. Patrick's Day and that way I should know that it is March. If not, don't be surprised to get a Valentine from me next month. - You have to keep laughing. :)

Discouraged

This has been a hard week for me emotionally. I got a denial letter from Social Security disability. I expected it but it made me feel hurt and angry.

I don't fit into a typical category. Everyone in the IA support group had told me exactly what to expect, and some of them got the exact same comment on their letters. My reactions are not frequent or severe enough to make me unable to work. Today I am able to chuckle about that just a little.

There is nothing to do now but get up and fight. Dr. Krishnaswamy has offered to help me in any way he can so we are going to have to get everything lined up in medical records. I have been advised to have friends and relatives write letters about how IA has affected my life and send them to SSA. (Social Security) I am going to start taking pictures of my reactions and my swollen feet. I am going to send examples of my illegible handwriting because I shake too much to write. I am going to send everything I can to show how life as I knew it was taken away.

I have to go to an orthopedic to get an injection in my hip to help with the pain. How I miss Dr. Mike Kimbro! I know he is doing good work in Peru but it was so nice having him here and being able just to take care of things like that. 

As allergy season gets into full swing, I have been told to expect more problems. Tree season is my worst allergy season and it is starting up with a bang. When my immune system gets triggered by anything it makes me more likely to go into anaphylaxis.

I am enjoying the sun being out. I am looking forward to the warmer weather and being able to sit outside some.  These walls get boring, but boring is safe. Going anywhere outside my home is scary. Someone can walk by me with perfume on and I have to use inhalers. I have become a prisoner of my house and automobiles. The porch will be a nice addition to my safe spots.

The thing I miss most this week is traveling. Scott and I usually made a trip to the coast in March each year. Last year Scott couldn't go so Louann and I went to the beach. That little fix of warm sunshine helped get me through until the nice weather arrived here. I cherish the good memories from those trips. and if I had known how my life would change, I would have went and did more. Take time to have fun while you can. You don't know what tomorrow will bring!

Father-in-law Update

Elmer's hemoglobin is up 3 points after 3 units of blood. His creatinine level is coming down and they plan to let him go home tomorrow.

I had an episode of high blood sugar and pulse last night but am doing ok now.

Snow arrived today to turn us back into a winter wonderland. Yuck!

Blessed

My father-in-law gave us quite a scare. He was taken to the hospital by ambulance on Thursday night with a blood sugar of 30. He was admitted and has had 3 units of blood so far, and is feeling better. We are so thankful that he is getting well.


I have recovered from the flu. After getting the PICC removed I have stopped having the strange reactions that were occurring with the flushes. The blood cultures were negative so we assume the reactions were autoimmune in some way triggered by the flush. Dr. Krishnaswamy says the PICC may have to go back in but we will keep it out as long as possible.

My pulses are running some lower on average. This is great. The bad part is that my blood pressure keeps bouncing from high to rock bottom. The changes in blood pressure make me dizzy and weak. It is hard to keep it at the tight level.

I am still averaging about 1 anaphylaxis per week. We have raised my prednisone dose back up some but I have stopped Plaquenil. We could see no change with it and it has too many bad side effects to take it unless it shows real benefits. I am seeing Immunology every 2 weeks now because I am considered unstable.

My cousin asked me to explain what all the medications I take do - I am still trying to figure out how to explain it. I worked in allergy for 6 years and went to many classes on the immune system. It is very complex and hard to understand. In order to explain what is wrong you really need to understand how the normal immune system works. Some of my medicines suppress antibodies. Some block histamines from attaching to cells. Some block leukotrienes from attaching to cells. Some stabilize mast cells. I also have medicine to slow my heart rate, lower the amount of acid produced by my stomach, cause my body to hold in calcium, remove fluid, and reduce inflammation. It might be easier to say what I don't take. There is very little information on Idiopathic Anaphylaxis, even in medical textbooks. Some of my doctors had never heard of it until I was diagnosed.

Scott continues to have severe back pain. He can no longer feel his feet. It has been a couple of years since he had an MRI to check the status of his tumor. For those who don't know, he has spinal lipomatosis. It is a fatty tumor growing inside his spinal column which compresses the nerves causing pain, numbness and weakness. As the tumor grows, the symptoms get worse.

I really don't like writing all these negative things, so on to some positive...

My little grandson is right on target with everything. The picture is his 21 1/2 week ultrasound. Casey and I have decided he looks like my dad. He kicks all the time, and if you poke his mommy's belly he will kick you. Casey got moved into a new place with more room for all the baby supplies. We are quite baby obsessed.

Kristen likes going to school at Tri-cities Christian, but is still leaning toward home school for next year. She is rapidly turning into a teenager.
Knitting is flying off the needles - mainly baby items. This is mostly because Louann and I are knitting together again. We aren't physically together but text or message each other while we are knitting. We miss spending time together so much. We haven't both been well enough to see each other since October. I haven't been able to spin because of hip pain, but am planning on getting my wheel back out and trying to learn to treadle with my left foot. It is strange that my feet seem to be like my hands - I am very right handed and right footed LOL

Overall, things are much better for us than for many other people. No matter how bad it gets we always see some other family in much worse shape. We continue to ask for God's will in our lives and the grace to accept whatever that may be.