Thankfulness

Sunday was an incredible day. I had 3 birthdays to celebrate and the day ended with Ron inviting several friends over to give me a blessing. More on that to come. My BFF growing up, Kate Date as she is affectionately known. Kate lives in Texas so I never get to see her. She is an incredible musician. She plays the piano and has a beautiful voice. But my favorite is her mastery of the cello. We grew up playing together, she on the cello and me accompanying her. Our mom's even made us matching dresses and bought us matching red shoes when we were in 4th grade for some performance somewhere. I love you Kate Date!

My baby bro, Stephen Preston, turned 45. He is 8 years younger than I. We were very close. Nils' middle name is Stephen, after my bro. Steve lives in Boston and I rarely get to see him. He has a beautiful wife and 4 gorgeous children. They came to visit this summer and it was so great to see him. I marvel at his fathering skills. He and Heather are such great parents. Love you Steve, and I have got to get back to see your new home!

The 3rd b-day is our baby Andy. He was born 16 years ago. He is always in the back of my mind, but the beautiful fall time of year, brings him to the fore front of my thoughts.

The Sunday meetings were all so uplifting and motivating. But the one thing that stood out, was the beautiful closing prayer that was offered in RS. It was a sermon in and of itself. The Spirit was so strong. We were all taught well.

The day ended with Ron inviting several men over to give me a blessing. It was so powerful and strong. I am trying to remember and record the thoughts I had. I had such a powerful feeling of peace. I wasn't told I would get well, but was given counsel on dealing with this life changing adventure.

One of the women suggested that Curtis have a blessing as well. I will be forever grateful for her inspiration. Many of his hero's were there, his young men's leaders. He so loves and admires them. Ron asked Greg Fawson, his scout leader to offer the blessing. Greg has been through an incredible last month and a half, with his darling Chantel. Chantel should really not be alive. They have been through so much, and I can only imagine the alone times Greg had as he could only witness the pains his sweetheart was going through. In a nutshell, she has had a chunk of her skull taken out, and her brain operated on to fix the problem. Everything about this experience has been nothing short of miraculous! Anyway, one of the first things Greg said to Curtis, is that there are guardian angels surrounding him to bear him up. I know that Curtis' special angel is his big bro, Andy. Thank you Greg, for your righteousness and inspiration.

Curtis and I were lying in bed talking the day over. He expressed thankfulness for living in such a great neighborhood with so many great friends. The Priesthood blessings that were offered, brought him, and me, so much needed comfort and peace. I am so grateful to the many adult examples of Christlike living. I am so grateful to his great friends, and to their parents. Thank you for looking out for my son.

I am so grateful for the gospel of Jesus Christ. I know He lives. I know He loves me. I know He knows all the thoughts and feelings of my heart. I know He knows the physical and mental pains I am going through, and that I will yet go through. He can succor me and bless me. He can show me the way. I am so grateful for the plan of salvation so I can live with Him again. I am a very blessed woman.

I have so much to live for, so much to look forward to. And through all the love and support coming the Nelson's way, I am going to be OK. And so will the rest of our family.

Thank you.

I hope and I pray

Ron, Jess, and Curt are running a 5K tomorrow. It is fun listening to them talk about the event. There are races every weekend. That is what I used to do. Connie and I would look at the race calender and plan our Saturday's around those races. We loved it! Even if we didn't, we did. My dream was to run a race preferably a marathon, with my children. Now they are all running and I am sitting on the sideline. I don't like my new spot as a spectator.

Last Thanksgiving, my dream came true. My whole family, including Ron and I, got up early, and ran a 5K! It was perfect! I was in heaven! Why do I love that so much? I felt good as well. I was still on pain pills, and the thought is that they were masking symptoms of this disease.

I've had a really tough week. I try to be strong and not let on too much how I'm really feeling. I'm scared, as I feel my body being ravaged. The methotrexate really kicked my butt! I am trying to figure what days would be best to be sick and plan the dosage accordingly. I think I will try Sunday night so I can be OK by mid week. I will make sure I don't run out of the prednisone again.

I hope and pray that the meds hurry and do what they are supposed to do. I hope and pray that this unwelcome intruder will hurry into a remission. I have a race to get ready for this Thanksgiving!

Good Morning

I ran out of my prednisone yesterday and it is amazing the difference taking that medication from hell, makes. I'm only 1 pill behind yet I woke up in the middle of the night in quite a bit more pain. And, I am much more stiff this morning. Not to worry. I will get more today.

Though I woke up in pain, I was SO grateful I didn't need pain pills to get me going. Back in addiction days, that's what I would do first thing in the morning. Take a pill. If not, I would feel quite awful.

I would so much rather have the pains I have now than all the pains that come with addiction. I don't know what the future has in store for me, but whatever that is, I will face it with a clear mind. I am grateful.

That's all.

Midway

I would like to comment on my appointment with my rheumatologist yesterday. I would like to tell everyone my experience with the lab tech, as she was such a dork. Instead, I am going to get positive and write about something much more important, my weekend of cheering for Jessica and Ron as they competed in their first triathlon, having my g-babies stay over night, and my sleep-over with Jami and her doll babies at the Zermatt in Midway.

Ron and Jess have trained for many months, swimming, biking, and running. They both are inspirations, as they worked and worked and worked to achieve this goal. overcoming many obstacles and set backs, but never, ever giving up! Way to go you two!

Jami and Dave got to go on a much needed and deserved get-away to the Zermatt in Midway, Utah. Ron and I used to do that all the time, and they were great! And, I got to have Tolman and Addison. Sunday after church, I couldn't find Addi's bink anywhere. I was exhausted and finally plopped on my bed and said, "Addi, I can't find your binki anywhere and I'm too tired to look any more." She burst into song singing, "Don't stop. Just keep on trying. Don't every give up." I laughed and laughed, but still didn't get up to keep looking! (PS. I finally found the bink stuffed in the bottom of her pillow case) This little 2 1/2 year old is so dang funny! She has such an adorable, quirky personality.

I drove the kiddos up to meet Jami and spend Sunday night with her, as Dave had to be back to work early Monday morning. I can't explain how great it was on all levels. Ron's father bought a little home on main street Midway about 40 years ago. They worked and worked on that little home for years and years, renovating and restoring it until it became a little piece of heaven, where I would often escape to with or without friends. I fell in love with Midway! I wish I had the talent of writing so I could describe the beauty, and the feelings of my heart when I entered Heber Valley. But I don't, so I will just say that any worries, anxieties, fears, or insecurities, all but disappeared whenever I would go, and I went often.

I loved driving Tol and Addi by the historical home on main street. I loved telling them about the birthday parties their mommy had with all her friends. About the big back-seat -of -a -car swing the neighbors had. Tol wanted to go see it, and possibly swing on it as well, just like his mom did when she was his age. I drove by the Timp Freeze and told them of the great soft-serve sherbet cones they had, with little plastic monkeys, and other animals, that they would put on top. I wanted to drive the 12 mile route where I took Curtis on a walk when he was 5 months old. He and I stayed there for a whole week! I ran my very first race, a 10K at Swiss Days, probably 25 years ago. Midway introduced me to my love of running. I wanted to jump out of the car and run it again. When Ron and I were dating, we would make a picnic, get a blanket, and go eat it by the river. I think we made out some as well. No, actually, I know we did! I don't know. Maybe we read scriptures. Yeah. That's what we did, I'm sure. Fun times!

Ron's 3 brothers bought the home from their dad and his partner, many years ago. We were not able to, as we were not in a financial position to do so. I never went again. My heart ached as I tucked my little sanctuary deep into the place where sacred memories reside.

The Zermatt is an A #1 classy resort. Many of the restaurants have won Best of State, and the food was delicious! But more delicious than the food, was being with Jami and her children. My heart was filled with joy as I watched my baby mother her babies! I loved watching the children pull the shades up and down, playing in the jet-tube yelling, "Gram! Come and watch me!", going out on the deck with heart shaped cut-outs in the wood railing to look at the little goats on the hillside, and the beautiful flowers in the window boxes, riding on the carousel, and purchasing milk-bone dog biscuits to feed the little goats.

After checking out, we played miniature golf. It was Tolman's first time. He got the hang of it and had a great time. Addi did her own thing with the ball and club. She loved holding the putter upside down, and putting with the handle. After the golf, we bought some yummy gelato to enjoy. Addi got the pink flavor. She loves anything pink and princess!

It was time to go home, as I as meeting Ron down town, as he was going to Logan with me, to my doctor's appointment.

I'm going to end this here, as I will get to the visit with the doctor later. Thank you Jami, for letting me experience the joy of memories from the past, and memories made for the future. I love you so much.

My bucket list..

I woke up this morning ready to tackle the world. I even put my running shoes on. But, my body had other plans. I have started methotrexate, a medicine that was commonly used for chemotherapy, thus many of the chemo side effects. i think that could be my problem today. So, I did what I always do when my body is being stubborn. I took a hot bubble bath.

I sat in the bath, closed my eyes, and went on some wonderful adventures. I dare say that pictures with a camera could not have been more beautiful! I came back to my bubbly retreat and started my new bucket list. Here goes:

1. Make a sanctuary of my master bedroom and bath, simply by just that, simplifying. And painting some soothing colors. (K, maybe more of a goal)
2. Have a private piano recital. I have always wanted to do that.
3. Run, jump, jog, walk, crawl, whatever, however, the St George marathon when I turn 55, 2 more years, with some or all of my children. Can you think of a better way to celebrate? Not me.
4. Learn a foreign language, preferably Italian or French, though Spanish would be more practical. Who cares about practical!
5. Go on an Alaskan cruise, but only if we could go on adventures off the ship for days at a time. Or, just go to Alaska without the cruise.
6. Visit all the beautiful castles in Scotland and Ireland, and visit Lewelyn's grave. I fell in love with the history, especially the incredibly strong and courageous women in the historical novels by Sharon Kaye Penman. You can borrow them if you want. (Thanks Connie!)
7. Go on a biking tour of the New England States, or Canada.
8. Hike to Havasupai.
9. Go skydiving without someone strapped to my back. (Kind of scared for that) I promise to open the shoot Ron!

I think that's a good start for now. I'll add to it later. But I better get busy. I need to go practice the piano.

The man in the hole

Yesterday was very humbling. I had lots of friends and family fasting and praying for me. The bishop also announced in church to keep "Sister Nelson in your prayers..". It was also announced in Relief Society. And to hear my name in a prayer was very humbling. And I must say, I learned a great lesson. It is so much tougher being on the receiving end of service. I was uncomfortable being prayed for publicly. But very grateful, for I know that there is power in prayers offered in unity.

So the latest diagnosis is going down a direction called mixed connective tissue disease, or MCTD for short. I don't know much about it other that what I have read on the Internet. I think the concern will be the extent of damage to internal organs. I think they are fine. I will be finding out with more tests I'm sure.

I am feeling many different things. Of course I am sad. Sad for what I thought my life after pills would be like. But mostly sad for the toll this is taking on my family. I can deal with what comes my way, but I keep thinking it isn't fair for my children to have to go through yet one more trial. The girls grew up not knowing or thinking that their dad would live to see his 50th birthday. I didn't either. It was very hard on them. They had so many responsibilities not put on too many children. I sometimes wonder how much more they can take. But, they became so close as a result. They have had so many trials other than family illnesses. They are tough. They are strong, But more important than anything, they all have been taught about the Atonement, our Savior's love for them and that there are not any trials we have to go through alone.

There is a story I am stealing from my friend. It is about a man who fell into a deep dark hole. Try as he might, he could not get out. A doctor walked by and saw the man. He wrote out a prescription and threw it down the hole. A preacher walked by and threw down a prayer. Another man came along and jumped in the hole with him. The man said, "Oh great! Now we are both stuck!" The other man replied, " No, I have been down here before so I can show you the way out."

The Savior can show us the way out of any hole we my be in, because he has literally been there. He conquered, and he can show us how to conquer if we let him. How much tougher our trials would be if we didn't have this knowledge.

And for that knowledge, I am so very grateful.

The summer of sick

So many thoughts swirling everywhere in my brain. Trying to organize them seems rather impossible at the moment.

How funny that this getting of pills blog has taken a huge detour. I haven't written about pills for some time as they have not been on my mind at all. Until yesterday. It is very clear to me why getting of pills has been next to impossible in past attempts. Even when I was in rehab. I never felt good. Not only that, but felt quite bad. I always wondered why, when everyone else was on many kinds of drugs and much more potent. I'm not a wimpy person. What was going on? I was older they said. What about the 82 year old alcoholic? She did amazingly well. She wanted it more. She tried harder. She complied. That is what they said. I didn't know how to try any harder. I didn't know how not to be sick. I kept going. Until I got home and had to go back to work. I wish I knew the number of times I told my doc. Something isn't right. Hypochondriac was his thought I'm sure. Run some routine blood tests. Always normal. I was sick in the head. More pills will get her out of the office. More refills as well. That way he wouldn't have to deal with me for many months. I don't blame him. Most of these tests are very rare. A doctor has to be very aggressive. Maybe my symptoms were just too vague.

Getting to the bottom of all this has been quite the journey. I'm OK. Nothing scares me. There are miracles happening everywhere. I'm grateful I have had this summer to be sick. Knowledge is power. Now that i have the knowledge, I can fight and fight and fight and fight.

Bring it on!

The phone call

I got a call from the doc today. It went something like this: Hello. Hello. Is this Sharon? Yes it is. We got the results from your tests Your ANA test was high which means you have an auto immune disease The Doctor wants to start you on Methotrexate 4 pills once a week Do you take vitamins Could you hold for a minute The doc is also going to have you take a perscription of folic acid What pharmacy do you use Do you have the phone number You also need to go in for more tests I have worked for Dr Walker for 3 years and I am not familiar with these tests but I'll ask him what he is looking for We need to see you in 3 weeks.

I didn't hear much of what she just said. ANA. Auto immune disease. Methotrexate. 4 pills once a week. More tests. I asked her if she would mind repeating what she just said. She did. I thought I listened. I asked her for a third time to please clarify what she had just said 2 previous times. Her nice voice had a little edge to it now. I don't blame her. She had a job to do. More victims to call.

I had so many questions. Why more tests? What is he looking for now? Folic acid? Prescription? I didn't know folic acid came in a prescription. What about rheumatoid arthritis? Lupus? Scleroderma? What? What about my elbow that won't bend enough to let my right hand reach my mouth to eat? or brush my teeth? or take off an earring? or necklace? That just started yesterday. Just double up on your prednisone. Can I take the prednisone with the methotrxate? It's just fine. Fine for who? What about long term? I'll get back to you on the tests. Come to the lab on the 3rd floor. I am from South Jordan. Can I get them in Salt Lake? Go to IMC, the Eccles building. I faxed the order in. It may take up to 2 weeks to get the results. He is looking for Lupus. Does that rule out scleroderma? I don't know what that answer is. I hope and pray they aren't looking for that, or that it was ruled out. It is bad. Deadly bad.

The great thing about being down is that there is only one way to go. Up.

Lessons

There was a fascinating 2 page spread in today's SL tribune. It was the story of a man who was critically injured in a bike accident last November. He is basically a quadriplegic. This man was a professor of English at the U of U. He loved the out of doors spending much of his free time surrounded by it's magnificence and beauty. He took nourishment and strength from the lessons that only nature can teach. He loved pushing his body, past it's limits sometimes, in all kinds of adventures. That all changed in a split second.

He told of the many lessons he has learned from being very independent, to now being dependant for even each breath he takes. He was asked if he would trade dressing, feeding, breathing, walking himself, you name it, in place of the lessons he has learned. He said, "I'd give up physical autonomy . I have learned the depth of compassion and friendship."

My honey and I went on a 2+ mile walk around the lake last night. It was great on so many levels. Ron told me of all the running routes he takes and how many miles they are. He stopped several times to assess yardage from point A to point B.

I also felt somewhat sad, as that is what I used to do all the time. I used to have sooo many running routes with all of the corresponding mileage. I asked Ron if he thought I would ever run again. He isn't sure. I'm not either I guess, as my feet, ankles, knees, even toes, were cramping up.

Would I give up lessons learned from trials experienced? Interesting. Because of my addiction, my children are all very cautious, paranoid almost, of taking any medications. I'm grateful for addiction. Our children had to lean on each other during the years and years of their dad's illnesses. They all support and love each in all they are and do. I'll take it. Losing Andy brought us Curtis. You all know the answer to that. With that came an empathy for women who can never have children. Corneal transplants blessed me with a deeper understanding of the atonement. Jami's car accident brought a dependence on the Savior I had not had. My prayers for my daughter, and a mother who lost her son, were never so fervent. I learned a better way of communicating with Deity. Having a daughter in turmoil to the point of contemplating suicide, taught me the deeper meaning of unconditional Christlike love.

There are other lessons I have learned from other experiences, and other experiences I have yet to learn from.

I don't know what I'll learn from RA. I am still in the denial stage. Do I wish I didn't have it? Yep, I do. The lessons will come later.

Side effects...

Methotrexate..."Methotrexate is also used along with rest, physical therapy and sometimes other medications to treat severe active rheumatoid arthritis (RA; a condition in which the body attacks its own joints, causing pain, swelling, and loss of function) that cannot be controlled by certain other medications. Methotrexate can be well tolerated, but also can cause severe toxicity which is usually related to the dose taken. The most frequent reactions include mouth sores, stomach upset, and low white blood counts. Methotrexate can cause severe toxicity of the liver, kidneys and bone marrow, which require regular monitoring with blood tests. It can cause headache and drowsiness which may resolve if the dose is lowered. Methotrexate can cause itching, skin rash, dizziness, and hair loss. A dry, non-productive cough can be a result of rare lung toxicity." PS..It takes about 3 months to start working. Until that time, prednisone, another toxic miracle drug. oh joy.

Hum... I was able to get into a rheumatologist on Tuesday. The reality of this disease hit me between the eyes! I start the above mentioned medication next Tues., after the results of my blood work comes in so he knows what dose I can handle. After feeling the adequate sorrow of my newly discovered bodily malfunctions, it is time to go to work.

New goals, new dreams, new everything. Chalk it up to another adventure called life.