Last month of the year

12/1/19

Happy December everyone!  Again, while I don't want to wish my life away, being close to 2020 means graduation is just ahead of the corner and I am so excited.  We came home from the cabin yesterday because I was having too many problems trying to get the programs to be compatible between my MAC, PERRLA, and my PC.  As it is, I continued having problems that I won't bore you with. But let me assure you that there were many, many tears yesterday.  I went to upload my very last assignment only to find my professor never opened the link. So now I don't know what to do. They don't typically accept papers through email. I'm leaving tonight for Mayo Clinic and cannot guarantee I am going to have a chance to upload the paper from down there. I hadn't even planned on taking my computer as its just one more thing I have to worry about. I really hoped this was it for the semester but it seems to never end.

I broke down and took Ativan last night and did manage to get 4 hours of sleep which was truly delightful. I went to the 0900 church service this morning and came home and wrapped Christmas presents. I am so very tired.  No possibility of a nap though because I need to be at Granny's a bit early for her birthday party.  Holly went over and did a day of pampering for her which is super sweet. She gave her a pedicure and curled her hair.  I plan to do more of that for Granny during my school break.

We finally have snow!  It sure is beautiful although I was just saying yesterday that I didn't miss it at all.  

12/3/19

There has been a lot going on since Sunday!  Granny's birthday party was a success.  She felt loved and pampered.  Holly went over earlier in the day and gave her a pedicure and manicure as well as curling her hair.  Granny enjoyed the spa treatment for sure.  I am going to make a point of doing that once a month at least.  I started to say once a week, but I tend to overbook myself and stress out, so a monthly goal will be much more reasonable.  I enjoyed visiting with my extended family.  Since I skipped out on the Thanksgiving get together, it had been a while since I had visited with them. I had some really fun conversations with my younger cousins. They are all such sweet and different human beings and I adore them all.

Things went exceptionally well with my travels.  I flew through TSA security without a hitch, my bags all stayed with me (or my plane) and there were no big delays.  I sat next to a lovely young lady from Anchorage to Portland who is working on her bachelor of criminal justice. We had some interesting discussions about addiction.  She shared that her older sister has struggled with meth addiction and how it has affected familial relationships, especially because her parents are raising one of the sister's children.  We both admitted we don't know the answer but we do believe people should stop being so judgmental and more interested in helping others.

I got to Rochester just fine.  I should add that I SLEPT ON THE PLANE!  I took Dramamine and got more sleep on the plane than I had in weeks!  I was still very tired yesterday afternoon and more than a little depressed at being here alone.  I laid down for hours but couldn't sleep.  Finally about 7:30 PM I made myself go get some dinner. I hadn't eaten since an early breakfast sandwich in Portland.  It dawned on me that my beloved Red Lobster restaurant was close by and since Mom was coming in tonight, I should eat there since seafood is off her diet due to Gout issues.  I told the waitress I hadn't eaten since early morning but I wasn't really hungry. I ordered two types of shrimp, mashed potatoes, and a Cesar salad.  It came with their famous biscuits of course!  I ate ALL of the food!! I did only eat one biscuit but really that was a lot of food!

I came back to the hotel, worked on my paper again because of the formatting issues, and then picked Mom up.  We finally went to sleep about 0100 and I have been awake since 0230 with intermittent awakenings prior to that time.  God gave me an idea in my sleep so at 0230 I was eager to try it.  I figured out all my technical difficulties with my paper and I JUST SUBMITTED MY FINAL ASSIGNMENT FOR THE SEMESTER!!!! I feel like jumping up and down and screaming, but instead, I am in the bathroom with the door shut so I don't disturb Mom with my typing!  I am high as a kite right now with thankfulness to God for showing me how to do this in my sleep. What a wonderful relief it is.  Now I can just concentrate on taking care of me and my medical concerns.  I do have four classes to log into this week but hey, I can do that!!!!! I don't sleep anyway so what does it matter?

I am so very, very, very, extremely very grateful to our loving God.  He is faithful and just.  Yesterday when I was feeling so depressed, two friends reached out to me to check in with me.  These two aren't friends I hang out with on a regular basis.  I have known one of them for many years but we don't stay in constant touch. Her reaching out was incredibly meaningful to me.  The other lady is a sweet lady I have known for a few years. She has also had a tremendous medical history and understands the emotional and physical toll on the mind and body.  I am also grateful for her support.  Comments left on this page (ANITA) bless me immensely.  Just knowing I have people in my life who love me and care for me brings me great hope and joy.

I had a wonderful phone conversation with Casey yesterday too.  He openly shared with me and it blessed me tremendously.  I pray our relationship continues to be blessed and he continues to do amazingly well as he seeks God's direction in his life.  Oh, God is so good.  How I love him so!

 12/5/19

I am taking the lazy way out and copy/pasting from my FB post so I don't have to retype.

 

I know many are wondering how things are going. I don’t really know how to answer that right now. I saw my transplant doctor yesterday and they are now trying harder to get me into the specialist that I knew I needed to see before who doesn’t have an appointment available. If you want a specific thing to pray about, please pray they can get me in before I leave on Friday. I need answers. They did a skin biopsy yesterday to test for GVHD. Evidently I have scaled skin? Perhaps reptile-like? I don’t know. They put a rush on it so we should find out by Friday. I’m having other tests later today so I won’t be able to eat till probably 3 PM which is no big deal except I do have Type 1 diabetes which is always challenging to manage.

My transplant doctor dropped my Prednisone dose in half so I’m now on 60 mg instead of 120. That’s fantastic, but when I dropped to 80 mg last week I started having symptoms again, so it’s good we are doing it while I am here to monitor. In the past, this has caused adrenal insufficiency, so they need to be monitoring me for that.

They want to put me on a $6600 medicine to help protect me better from mold and fungus, but the insurance doesn’t want to pay for the medicine.

My Anchorage provider told me I didn’t need to be on penicillin anymore and my transplant doctor wasn’t impressed and I was immediately put back on that. I was also told by Anchorage doctor not to worry about my Pantamadine treatments- also false... Mayo has no appointments available for that breathing treatment so they are trying to figure out what to do there.
I’ve been awake since 0130, but did get about three hours of sleep so I will be good today.

Biopsy was sent to Mayo in July and they diagnosed me with GVHD in my gut. They can’t find that report THEY did in their system. I had to call my Anchorage GI to ask them to fax the report Mayo sent them. The Anchorage fax is down and they don’t know when it will be fixed.

My Mom and I are enjoying our time and we’ve centered our time around all the great restaurants here that we love. Tomorrow we will go to our favorite Vietnamese restaurant. I cannot get their chicken noodle soup out of my head!

That about sums it up! Please pray all the appointments I need will be available so I can come home on Friday!!! Thank you for your messages, your concern, and mostly your prayers. ❤️❤️❤️❤️🙏

OU my faithful friends, made a miracle happen. I just now was told they made an appointment with the GI doctor tomorrow! I can hardly believe it, but I don’t know why I ever doubted the strength of prayers from all of you! I am thanking GOD and YOU right now! And thanks to a friend who confirmed I can get my respiratory treatment at Providence as an outpatient. I have my doctors here contacting the doctor in AK to arrange it. Wow, this is all coming along nicely!

AND IT GETS BETTER!!!! This is Casey's post I copied. I am praising GOD for him tonight and every night. He is now an official volunteer firefighter and is so excited and filled with purpose. God is so good and amazing.

I have an opportunity to serve my new state and community! Tonight I officially start my journey with the volunteer fire department.
PS: The guys have already given me the nickname Spanky. It was crucial to get my nickname declared almost immediately, due to the fact the Chief's name is also Casey. so, Being the new guy in the department, I am no longer Casey Marre.... I guess I’ll have to navigate life with the name Spanky... just one more opportunity to rise above my circumstances I suppose 👌👍

I really don't know why I am surprised that God answered our prayers for my situation and for helping Casey overcome his addiction.  Why am I surprised? We serve an amazing God and people have been praying. Miracles DO HAPPEN!!!!! Thank you, Jesus!

My mom and I have been having such a wonderful time together. I feel bad because she has to wait around for me 7 hours plus a day at the clinic. There have been some LONG days!!!! Yesterday was 7.5 and the day before was 9 hours. Tomorrow it will be at least 6. We are exhausted.  Our highlight has been shopping and eating lol.  We have a favorite restaurant in Rochester- PHO CHAU.  At least it's mine and I come every time I am in town. Last night we had an enormous bowl of chicken noodle soup and egg rolls. Tonight we are going back and I'm having the shrimp lo-main.  I also went to Red Lobster before Mom got here and got my shrimp and biscuit I love so much.  It's all about the food here which is hilarious because I don't usually get so excited about food!  I also bought my usual sugar-free malt balls.  Rochester Apache Mall is the only place I can ever find them so I only get them when I am at Mayo.  We did our usual Dollar Tree shopping when I load up on cards. I pick Granny up some too so I ended up with 73 cards this time!  I may have overdone it?? In the end, it does save money. The poor cashier wasn't impressed though....