Hello Darlin'

...it's been a long time. :)

Live continues in pretty much the same way. Anaphylaxis continues...

I am on a new immunosuppresive drug. It is making me significantly anemic and I stay so tired. My dosage was doubled on December 5th. We are hoping my white count stays above 4 and that my platelets remain at an acceptable level. Before anyone says something to do for anemia... this isn't a deficiency. It is a result of bone marrow suppression caused by the drug I am taking. I can eat liver until it runs out my ears and it won't help (not that I would eat liver anyway - yuck!)

I still knit some, make some cards and scrapbook when I feel like it, and read. I just started watching Upstairs,Downstairs on Netflix. I am amazed at the subject matter they showed on BBC in 1971.

Bentley had his first visit with Santa last night. He is growing up so fast.

Your Eyes Are Not Deceiving You!

You really see it...my right leg. I have come out of the cast boot. The fracture lines are still evident; so much so that I could see them across the room on the computer screen in x-ray. I thought when I saw it that I was in for bad news, but when Shawn, PA came in he said I could come out of the boot. The bone has healed a lot for me. There is some callus formation. The rod keeps my bone from moving, so here I go.

I must admit I have had quite a bit of soreness in my leg. My calf muscles were pretty much flab so I have a way to go to build them back. I have aching at the fracture site too, but I hear that will always be with me at times.

In other health news, I am slightly improved on anaphylaxis - maybe every 3 weeks for the past couple of months. I fear that when the heat really sets in I will have more frequent issues. I have been having lots of rashes and itching. I don't tell someone every time I have a little symptom anymore - it stresses everyone and me being stressed is quite enough for this world.

My Irritable Bowel Syndrome is reeking havoc on my life. I went for about a month with constipation, which is miserable, but I am now back in diarrhea phase. Ugh.

I also need to thank my friend Ruth who sent some money to help out with expenses during the winter that I had previously forgotten to mention. My cousin Pam sent me a Cades Cove Mystery to read on my Kindle. I have to admit that I have not been reading much lately. I never knew before IA that you could be too tired to read.

Bentley started walking at 8 1/2 months. He now runs. He has several words in his vocabulary that we can understand, but he talks quite a bit in words that we don't understand. I am sure he knows that they mean because he gives me a very serious Bawbaw look when he talks to me. LOL

We are going to be bad this weekend! Bratwurst and hot dogs! Yum! Obviously they are not fat free hot dogs, but Nathan's hot dogs. Ah - a heart attack on a bun when you add Valleydale chili. Scott does try to soak up some of the fat in the chili with paper towels, but it still has plenty of yumminess.

Happy Memorial Day!

Easter

Bentley had a wonderful Easter. He loves eggs, so he has enjoyed pickled eggs, Mexican deviled eggs, Easter deviled eggs, regular deviled eggs and Easter eggs. He has been in egg heaven. During Easter lunch, he had an egg in each hand. Our little boy is the main attraction.

We had a wonderful family Easter. Bentley loves his Daddy, Pops, and Bawbaw so much and he had all three of them there. By the end of the day he was reaching for Uncle Mike too.

Kristen colored Bentley some real Easter eggs. We were anxious to see what he would do with them. The first he dropped and broke. The second he tried to bite into it with his little teeth. Jdub took them away so he wouldn't eat the shells. LOL

My stomach has calmed down a bit so I was able to eat a small meal with just some stomach pains. It is so hard when you have all that yummy food in front of you to just have a tiny portion of your favorites.  I am really happy that I got to eat as much as I did. Food is such a wonderful thing.

What A Relief

Yesterday was my hearing with the Administrative Law Judge.
Scott and I went on to Kingsport on Thursday night because we knew I would not be able to handle the ride over and then meeting with my attorney and the hearing. It is impossible to find an inexpensive motel in Kingsport. We ended up staying at the Jameson Inn off Exit 4. It was very nice and very clean.

I have been having tummy issues for a while, but Thursday night was the worst in quite some time. I ended up being up most of the night with severe cramping. When I saw Dr. Litchfield earlier this month he doubled the medication for "colon spasms", but it did not touch these. I fell in the bathroom, waking Scott. No serious injuries to me but Scott was very alarmed. LOL

Friday morning I could only sip water. I had been in this condition in December when I was admitted to the hospital.

We arrived at the Social Security building a bit early. My attorney went over all the questions he would ask me during the hearing. He said that the judge would also ask questions. A vocational expert would also be questioned by the judge.

Mr. Desparti explained that the vocational expert would be listing jobs I would be able to do. He told me not to panic, because when he questioned her that he would show why I was not able to do those jobs.

As Scott and I waited, we saw other people coming from their hearings crying or very angry. Only one of Mr. Desparti's clients looked upset. When he came to get me for the hearing to start, I was very nervous.

The room was nothing special. The judge was not wearing a robe. The court reporter came over and told me if I was unable to sit that I was allowed to get up and walk around. She said I could sip my water when necessary. My mouth was so dry that my tongue would stick to the roof of my mouth - I was very dehydrated.

The judge swore me in, and Mr. Desparti asked the questions we had gone over. The judge told me that all of my doctors thought I was unable to work. He asked if I agreed. Of course I said yes sir.

He then asked the vocational expert based on a hypothetical person with the medical information in my file, what jobs she would be able to perform. She answered none sir. Oh boy! This was not what I expected. He then asked her based on my testimony if this were a hypothetical person of my age and training what jobs that person would be able to do. She answered none sir. At this point I felt sure that I was going to pass out right there!  The judge asked the vocational expert what led her to come to that conclusion. The first thing she answered was unexpected anaphylaxis. She listed off almost all of my problems.

The judge then said that I would be receiving a letter in about 60 days with his ruling but he was going to give me a favorable decision. Wow - I could not believe that after all the fighting I have done since August 2010 that it would be this simple. The judge refused to make a decision based on my medical records 5 times, but now he gives a favorable ruling without even asking any difficult questions. I was in shock.

The judge did ask me to explain why I had wages after the last day I worked. I told him it was the vacation time I had left. He said that is what he thought and that we were dismissed.

In the hallway Mr. Desparti reiterated that it would take about 60 days to receive the official ruling in the mail, but that since I knew the ruling that I could put all of this behind me.

I got to the waiting room and had to sit down. Got to the chair closest to the door and had to sit down. Then I made it to the car. We were  parked right in front of the door, so it wasn't very far. When Scott got in I told him we got a favorable ruling. We were thanking God that this fight was finally over.

Does this mean I will now have more money? No. My long term disability insurance will pay me the amount above what I get from social security to make up the difference through October. My social security check will be a great deal less than my insurance, so starting in November we are going to have to tighten up on the budget. I will be eligible for Medicare in January which will be very nice. It is extremely expensive for Scott to carry a dependent on the NC State Health Plan.

I thought once the hearing was behind me that I would feel much better. Wrong! Scott got me a diet Dr. Pepper. I couldn't drink that. He then got me a vitamin water. I could drink sips of that. We went by Scott's dads house and I rested on the couch. I kept feeling worse. Scott asked if I wanted to go to the hospital - no! I promised that if I was not better by Monday I would go to the doctor. On the way home, I felt like my blood sugar was bottoming out, so I asked Scott if we could get a snack.
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LOL. We went all the way back to Valley Forge to get me a hot dog and diet strawberry lemonade. I ate the hot dog and felt better, but it made me very nauseated, even with Zofran and Phenergan. When we got home I went to bed. I got back up around 8, and Scott asked if there was anything I could drink. I told him nothing fizzy, so he made a pitcher of my favorite cherry-pomegranate drink mix. I couldn't drink it either. I went back to bed.

This morning I am drinking my Diet Sunkist and eating crackers. Go me! Things are looking up! Scott asked if I wanted the steaks he got last week on sale for supper. The thought of them didn't make me gag, so we will have those. I am hopeful that my stomach is settling.

Bentley is walking! He started taking a few steps at 8 1/2 months, and at 9 months he is on the move. A smile from this little guy can make me smile on the worst days.  At my suggestion, Casey and Jeremiah did Baby Led Weaning with Bentley. He eats everything we eat. It is wonderful not to have to worry about baby food. Bentley loves everything, but his current favorite seems to be broccoli. He can even find it at the grocery store.

I haven't stopped reading, but did stop trying to keep up with all of them for the blog. If something is outstanding I will let you know about it.

Knitting is slow - I can't hold the needles for very long.

It's Been A Long Time

There isn't much new to report.

My stomach issues are less frequent but more severe when they occur. Sometimes the medications just don't work.

I am now allowed to put full weight on my leg with my brace on, but the bone is still showing minimal healing. The rod holds the bones in place allowing me to walk on it. I'm thankful that I was able to have the rod placed. If not I would still be no weight bearing.

The IA remains about the same. I also have the weakness, shortness of breath and extreme fatigue still. For the past few days my blood pressure has been extremely low even without my blood pressure and heart medications. I am going to keep checking it before taking the medications and see what happens.

Bentley decided to help his Mom bake a few days ago. He got into the flour container by himself while she was busy with other ingredients. He took 3 steps unsupported last week. He is exploring everything now.

Variety

My reading has a touch of variety on this post. (Just a touch)

The Frontiersman's Daughter is about early settlers in Kentucky. The main character's life goes from childhood to adult. It is a romantic book. I give it 4 stars. I read this free from ebookfling.com

The Devil's Peak is about abuses that occur in long-term care facilities. It is told from the viewpoint of a man who they believe to be brain dead, but he is actually aware of everything that goes on. This is an excellent book and tells the truth about things that happen, having worked 2 years in long-term care myself. The author also worked in long-term care. I give this 5 stars, and I think everyone would enjoy it. I got this for free from ebookfling,com also.

The Healing is about a family who moves from Pennsylvania to the Amish country in Kentucky. It is also romantic, and I give it 5 stars. It was especially interesting to me because I have an uncle who lives in that area.

Health wise, my stomach issues are much better. I have had a few episodes, but nothing like before.

I hit my broken leg on the toilet getting out of the shower last weekend. I have a bruise that is about 6-7 inches long and have been having increased pain. I had hidden the bruise from Scott until this morning. He said, "Why didn't we take you somewhere?" I said, "What are they going to do? They already put a rod in it."

Bentley is enjoying a week at the beach. He has tried all sorts of seafood, but he still likes kiwi better than anything else. He tried to taste sand but it fell out of his hand before he could get it to his mouth. He loves the pool too.

Not Much Happening

My stomach has settled down for the past 4 days - knock on wood. I ate Chinese with no problems last night.

I finished this novel on my Kindle. It is another Amish story. It was very entertaining and had very little knitting content other than the knitting group they had weekly. This is a good book for the women. 

Medical Updates

Let's get the good parts first. I finished The Mercy, the last book in The Rose Trilogy by Beverly Lewis. I really enjoyed these books, and it is disappointing that there is not another. I give all three of these books 5 stars.

On to doctor's reports...

The ulcer on my heel is healing very nicely. The open area is down to about 1/2 inch. I am to keep up with the dry dressings since they are working so well.

Unfortunately, my x-ray shows no improvement since my last visit. The bone is just not healing. They assure me that we don't need to worry yet. They expected this to be a long road because of my medicines and diabetes. My weight bearing is still 60% on my right leg. 

Nephrology says my last labs were great but she doesn't trust just one lab report due to the possibility of an error in the lab. She also restarted my Lasix due to my having so much swelling in my feet and legs. I have labs in 2 weeks to see where we are then.

I'm fighting to stay out of the darkness. Here is what is keeping me  somewhat sane.

Lots of Reading

I have been reading lots the past few days. I am really enjoying reading this trilogy.

I am looking forward to my orthopedic appointment on Monday, hoping that I can get rid of my walker. I  flipped it over and it hit my foot this morning making a nice bruise.

No Bentley today. Casey and Jeremiah are both sick with sore throats.

 

Weather leg?

I'm not sure if I have put too much weight on my leg today or if we are having some bad weather come in. My brother broke his tibia almost 19 years ago and he can tell when bad weather is coming in by his leg pain. Either way, I filled up my hot water bottle and have my leg propped up.

I saw my cardiologist this morning. Dr. Haddadin feels my pulse and blood pressures are high but not high enough for invasive treatments, so I will be continuing my current medications. He also said he would help with my disability claim in any way that he could.

I didn't manage to get over an hour total of sleep last night, so while I was up anyway I read The Thorn by Beverly Lewis. I had missed this series, and I am glad I can get 2 more when I want them. I got this book from ebookfling.com. Beverly Lewis fans won't be disappointed.

ebookfling.com

I have been a huge fan of booklending.com, but when I added my Kindle books to ebookfling.com today I already have 10 credits. It is easier to navigate booklending.com, but easier to add books to ebookfling. ebookfling.com also loans Nook books. I will be going to ebookfling.com first from now on.

For Time and Eternity was a booklending.com loan. It is about the wagon trains going west, but this is a Mormon wagon train. At that time polygamy was still practiced by the Mormons, and it shows the viewpoint of the 1st wife. I liked this book.

We had a very nice visit with Bentley and Casey yesterday. After leaving our street, someone on Sunset Drive was driving in the middle of the street and would not move over causing Casey to break the mirror on her Santa Fe. It is so common for people to do that on Sunset. We all need to be more aware. I was guilty of not paying attention myself when I was still driving.

After Casey got home, she was making Quick Vegetable Soup, a family favorite. Bentley got into the potato bag and was having a little snack before she got to him. He moves so fast now that it is hard to keep up with him.

WooHoo!!

We didn't get our mail out of the box until tonight. My long term disability has been approved again. This makes me feel so much better emotionally. It is terrible to be so sick and have someone on the other side of the country saying you are able to work.

I haven't read much lately but I did finish The Telling by Beverly Lewis. It is the 3rd of a series and I enjoyed reading all 3. My mom loaned me this book.

Thanks again to all who have helped us survive the 2 months that we were without my disability check, and to all the doctors who wrote letters. Without help we would not have made it through this. 

Good News

I had lab work done last week. I got results in the mail today and my kidney function has improved by 20 points since my nephrologist took me off Lasix! I now qualify for some of the drugs we had wanted to try for my IA.

It is so good to have something positive to post for a change ;)

More of the Same

I re-established with my previous immunologist yesterday since Dr. Krishnaswamy has taken a year leave of absence to care for his aging parents. He changed some of my medication doses, but nothing new. We went through all the drug suggestions and I explained why we did not use them - my poor kidney function.

It was a beautiful day to get out of the house. Sunny and warm all day. Ir is gloomy today but my sunshine is coming to visit. Bentley brightens the day no matter how dreary the weather may be.

Thanks to my parents and my son-in-law and daughter for the financial help. Also so much thanks to my mom who makes me breakfast every weekday morning and also comes up and helps with cleaning. My dad brings my breakfast and lunch to me everyday and drives me where I need to go. Without my parents help, Scott would have to miss more work than he already does.

ASU has a shared leave policy that allows other employees to donate some of their leave to other employees who have family members who are sick.We usually don't know who gave time, but thanks to Angie who donated 100 hours and to Larry for his donation. It is so nice to be able to ask Scott to stay home or to come home when I am having a really bad day.

Scott does everything for me. He changes dressings, helps me bathe, cooks and cleans. Anything I need he does. If I have a bad night he is up with me, and then still goes to work the next day. He does all this even with the severe pain he has. It is true love.

Casey and Jeremiah got me Wishes and Stitches for my birthday. I loved it. There is a lot of talk about knitting, but it is also a great story. I think even a non-knitter would enjoy it.

Cold and Snowy

Things are looking like January here. There is snow covering the ground and it has been very cold. I really hate winter.

I listened to The Confession by John Grisham on Audible. Excellent book! 5 stars from me. It is about an innocent man on death row just 4 days from his execution. Scott heard a few minutes of the book as he was making dinner and had me download it to his iPod. Scott is not an audio book fan, and he rarely reads fiction. It must be good if he wants to listen LOL

As I listened I knit some. I made covers for my Kindle and Mama's Nook. They are just simple little bags. My secret Christmas knitting was hot water bottle covers for our dads. The hot water will warm their feet but won't burn them like a heating pad.. They are both diabetic and getting a burn is dangerous for them both.