Our Update

It seems a little funny to be saying “our,” but that is my new reality. First and foremost, what is going on with my daughter and then what God is teaching me through my own issues as well. I’ll be completely honest. It has been very difficult and almost overwhelming! But the God who made me, knows exactly what I need, when I need it! I finally have very caring doctors and nurse practitioners who are able to help  me because they listen! How unusual that has been in my life until I moved here. So I am very thankful for them all.

That said, let me tell you about my daughter and how she is doing. Her PET scan showed that the cancer had not metastasized beyond the breast and two lymph nodes. Apparently there had been a good chance that it had gone to her brain, but again, it has not. She started chemo the middle of November and we had a “Shave the Head party” the night before Thanksgiving at my other daughter’s house with all the family gathered around. How brave she is!! There were no tears, except for mine, when I escaped to the bathroom for a few minutes. That was a hard thing to watch, but she didn’t want to go through the hair falling out and they had promised her that by that weekend it would start.

The hardest thing about the chemo is the bone pain. This was totally unexpected, at least on my part. I’m not sure about her’s. They usually tell her what to expect, when. Still, she said this is the worst pain she has ever experienced in her life. Whatever bones it is hurting, if it’s her knees, as an example. She says it’s like she has been beaten with a baseball bat and her knees have exploded! She asked for specific prayer on those days when she was expecting the bone pain. I put out the word to my Bible study class, Sunday School class and whomever I spoke with. And believe or not, the pain is much easier and she is better able to handle it! Only God could make this happen! She has one more of this particular kind of chemo treatment the day after Christmas, then they start adding other chemo meds in too. Again, we are asking for prayer that she can get through these treatments. 

I have known so many women who have gone through breast cancer chemo, but none shared the details of what they have actually gone through. It’s ugly awful. The other prayer we are asking for is that the tumor will greatly shrink through these treatments.

As for me, I will start neuromuscular physical therapy in January. I have no idea how it will be different from regular PT that I have had before and didn’t help. I am still riding my recumbent bike and doing the stretching exercises with the big elastic band. But none of that has helped with the balance or kept me from falls. I fell twice over Thanksgiving and injured my left hand and wrist and am now wearing a brace, grateful I didn’t break it! But oh my, it hurts!

 I have discovered a new research program which believes they have discovered the “why” of Parkinson’s, Parkinsonism, MSA, ALS, etc. I did sign up to hopefully be a part of their drugl next year. It is not supposed to have any placebos with any patients, or side effects. What they have done so far is remarkable and really could represent a “cure.” That would be pretty awesome for so very many people!

I hope you all have a wonderful Christmas and New Year! Happy Birthday Jesus!

Cindy

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My Youngest Daughter Got Married!

On September the 2nd, our Laurel married Jeff Chaney. He is a young man we are very happy to welcome into our family! It was a lovely wedding attended by close family and friends. If I can ever figure out how to take the pictures I’ve been sent and download them into my picture file, I’ll add one of the bride and groom to a post. It was obvious to all how happy and in love and loved they were!

So this is some of why I have been silent for a little bit. I have been away for the wedding and preparations. I was also still seeing several doctors and visiting emergency rooms beforehand. I think we have my heart figured out now. It’s just a lot of angina, due to a lot of small arteries that can’t be stented. That causes the pain. The good news is I have a new medicine name Repaxa, that I take regularly now for the pain and I don’t have it anymore! So thankful. I got it before the wedding weekend started and that helped so much. Just because I have Parkinson’s doesn’t mean I’m giving up on life, y’all!! I have an appointment with the head of the neuromuscular clinic at U of Florida in November. I will see him and 3 different therapists to help me through this challenge. They will send the info to my doctor and everything will be followed up here with the appropriate therapists. I am very happy that I can get this help. I do think it will make a big difference in the quality of my life!

Some of my dearest friends and family have agreed to be prayer partners and be on an “on call” thread text in case I suddenly need prayer and don’t have time or ability to do anything but alert by me or my husband saying “pray” on the thread. How neat is that. And I am getting devotionals and you tube notes, Bible verses, all kinds of encouragement. Thank you all.

Cindy

NEW CHALLENGES

I know that I have said time and again how faithful our Lord is, but this summer again in particular instances, He has shown once again how loving and involved in each life, He is! As I speak with people each day, I am still astounded at how He leads me to certain people who either need Him or know Him and we can rejoice together! As usual there have been physical challenges as well, part of the reason I haven’t written as much. I have found that most of the time it has been all I could do to do my work for the day. I had thought that after I had back surgery to remove a cyst off of my spine which had wrapped itself around several nerves and caused me great pain and difficulty walking, was really past the bad stuff! I have had blocks in my neck before and I did need that before we were finished with everything. Unfortunately my problem is at C2/3 and they cannot fuse it or I could never move my head again! So I was told the best thing was to burn the nerves and that would take care of the pain. The problem though, has been an extreme side effect called Ataxia. You lose the control of your legs.  Sometimes I am walking and it is just as if I don’t have any legs at all, they give out on me. So I fall or just sit down abruptly. Most of the time, when I am walking, though, my legs just look spastic. My doc has assured me that this will clear up within another week! I hope so. So far, it has been 3 weeks today. What I have read, says 7-10 days. Physical therapy will start working with me this week and see if we can speed up the process.

My other issue is spiking blood pressure. It goes very high and then will get down to a reasonable level. We are working with new meds on that! This is a problem that my mother had. Hers would just go up and down and up and down too. Its very weird. I have a great internist though and like I said brand new medicine to take.

So any of you who know me would know that I would go straight to my Lord God about all this. He has set my path. I know this like I know the back of my hand. Yesterday, He reached out to me through my devotional. Many of you know I read Jesus Calling by Sarah Young. So yesterday was talking about the human body and inevitable effects of aging. That even if I were a superb athlete, which I am NOT, most cannot maintain their fitness over many decades. But this is specifically what it said ” Do not be anxious about the weakness of your body. Instead, view it as the prelude to My infusing energy into your being. Though the process of aging continues, inwardly you grow stronger with the passing years. Those who live close to Me develop an inner aliveness that makes them seem youthful in spite of their years. Let my Life shine through you, and you walk in the Light with Me.” Isn’t that beautiful? And of course the first scripture verse was Psalm 139:14 I will give thanks to Thee, for I am fearfully and wonderfully made. This particular scripture is one that I have really gone to the Lord about many times in my life. If you’ve read my stories, you know that I don’t have a perfect body according to human eyes, human thoughts. What My Lord has taught me through all of these things is that I must depend on Him for my very breath and heartbeat; that the people he has me meet through the issues are put there for a purpose. So please pray that I will be mindful of these things as I recover!

I mentioned that God had been faithful, oh so faithful. I cannot begin to count the ways and He wouldn’t want me to! But He has just blessed us so incredibly this summer in ways we never would have dreamed. Still, our Lord knows our heart and our deepest longings. I believe that if we are faithful to Him, He answers us!!! One of the ways I can talk about is my business that finally it seems that it is coming together. I know that I am going to get better as God even went before me and has arranged a business trip (short) to Houston in 3 weeks. I have been wanting to go for a year and now it has all come together in perfect timing for everyone. I know my Lord. I will be ready.

One last thing I will leave you with is from my devotional today. “The Lord gives and the Lord takes away. Blessed be the name of the Lord. Remember that all good things-your possessions, your family and friends, your health and abilities, your time- are gifts from ME. Instead of feeling entitled to all these blessings, respond to them with gratitude. Be prepared to let go of anything I take from you, but never let go of My Hand!” Psalm 139:23-24 Search me, O God, and know my heart; Try me and know my anxious thoughts; And see if there be any hurtful way in me, And lead me in the everlasting way.

Believe me, this is a truth from the Lord. I have had this happen. But He has restored everything. Now, I have to hold onto the lesson.

June 13th Was My Birthday!

As many of you know, I consider it quite an accomplishment when I get to celebrate another birthday! And so it was this year too! First, I should count my many blessings: my husband of 34 years whom I love so much! My wonderful kids-actually grown women now and son-in-law, and 3 fabulous grand girls! Then there are all of my extended family, my 5 siblings and their families. I have such great sib in-laws, and nieces and nephews and 2 grand-nephews. Then there are my cousins and their families. I look back through the pictures of my life and it has passed so fast so far! I have so many wonderful memories. Not that I plan on stopping making memories, but today I feel very blessed. The picture which I will attach and am going to try to change on the Gravatar is what we took last Friday night. I was full of fresh oysters, shrimp and pompano (a wonderful fish)! All fixed at home, so far we do it better than anybody we’ve found locally! And I do make this wonderful salsa to go with the fish and shrimp. Marvelous!

As I have said so many times, it is the Lord’s blessing that I am here. We do believe that we are living in Paradise on earth anyway, back in FL. I have been able to find some genuinely caring doctors who have gone above and beyond to see to my care. I thought that I would simply see a breast reconstruction surgeon when I got to FL as that was what I was cautioned by my oncologist. I had a lump that was needle biopsied after an MRI couldn’t tell clearly what the lump was. When I brought the MRI to the FL surgeon and we discussed the lump, he said he wasn’t as concerned with getting that out as he was with the picture of my other breast. He showed us that it clearly showed the implant was millimeters from pushing through my skin! This would have been catastrophic on many levels he said. Immediate overwhelming infection, and less so, they couldn’t put the implant back in for 6-12 months. He emphasized the need for immediate surgery which I couldn’t believe they got approved so quickly with my insurance company. Once he got in, he said he found a mess. The previous breast surgeon I had after my double mastectomy had put in silicone implants, one that ruptured. When he replaced it, he never bothered to clean out the silicone. So it’s been flowing around loose in my body for all these years. It probably has something to do with the immunity disorder that I have as I have read that the silicone ruptures did lead to immunity issues in people. All I can say is it’s a good thing he is retired!!! Because of all the mess, it took 3 hours to do my surgery.  This surgeon has been incredible. I asked him about his bill and he said I would never see one. I asked if he was sure that Mentor would pay for my implants, he said absolutely. The hospital care was great too. Even his follow-up care has been above-board. He saw me in the office on a Sunday last week because of course, I have some infection. But he wanted to check me himself instead of sending me to the ER. Can you believe that? And he had already driven an hour out-of-town to do military stuff for 9 days. He is the only guy they use!!

Today I had another block in my back after seeing a neurosurgeon who wants to do a sacroiliac join fusion which he thinks will help my pain hugely. But the catch is being off of my right leg weight for 6-8weeks and I live in a townhouse. I need a stair lift and right now that isn’t doable anymore than more surgery is–maybe late this fall? In the meantime, I have a great pain management doc and he schedules me really fast. We saw him Wed and I had the block today. I have no pain at all in the joint. It usually takes a few days for the muscle going over to my hip to get the medicine to, but here is hoping it works for a while!

I have had the most difficult of business weeks. I don’t think I could have managed without my devotional and all of the scriptures from Jesus Calling. Please pray for me that next week goes well as it is a very important week of interviews!

So now we have been here 3 months. Slowly making friends with our neighbors and people at the church. It’s been hard with me being down, but I hope to start having people over for dinner! And I can’t wait for Bible Study to start in the fall. Bible Study and Sunday School that’s where you make your best friends.

so I think that is enough of an update for now.

Cindy

 

Surely God Is My Salvation; I Will Trust And Not Be Afraid, Isaiah 12:2

The verse in the title came from my devotional this morning. I should finish it…  “The Lord, the Lord, is my strength and my song; He has become my salvation”. The Lord told me that hardships come my way as part of my journey. He is careful as He allows them and exactly how hard they are! But He said to not retreat in fear from the afflictions, since they are among His most favored gifts.  This was from the book JESUS CALLING  by Sarah Young.

Now let me tell you why this was so very important to me this morning. Last night, we had gotten home from a short visit to the Panhandle of Florida (more news on that later) but I had been short of breath and my chest had hurt increasingly as I coughed or laughed. So I had used my nebulizer, taken my other meds and just gone to bed early. I knew there was no way that I wanted to go to the ER on a Saturday night in Atlanta! I slept most of the night propped up on multiple pillows and had a neck pillow for my head.  My husband had thought a heating pad would help, so I used that too. Still we woke up early, not having gotten a lot of sleep. It was a rough night! Oh how much I prayed about NOT going to the hospital again! I prayed in the early morning, really having a running conversation with the Lord because by then, He had told me to go. I begged and pleaded not to have to or even just to go to Immediate Care, but no, He was so insistent. I can’t laugh, because it hurts, but I think now back on our conversation, He was very gentle, but like I said, so compelling me to go there!

So off we went. Everyone thought I had thrown another clot. I kept saying, ” I don’t have sticky blood!”, but the symptoms were there. The problem was that they needed to get an IV in the crook of the arm area. NOT the best vein area for me. I have the tiniest veins! It took 2 IV nurses and a sonogram machine to get the IV in a vein that didn’t blow! I have bruises everywhere else. The good news is/was that it wasn’t another clot! The bad news is that it seems I have pleurisy-and oh my goodness, does it ever hurt! They treat it with steroids, just like my asthma, so once they kick in, perhaps I’ll feel better. Steroids generally gave me energy and took away my RA pain. I certainly pray they will take away the lung pain. I have to admit to being pretty miserable with it.

And yet, I truly can say, thank you Lord! Thank you for the check up which I apparently needed. Yes, He knew that. And yes, I can praise Him through the pain as He is my Strength and my Song. Still, I would appreciate your prayers as I recuperate.

MY ARM UPDATE

I have progressed to being able to type  for short periods. I don’t have to use all caps, can use punctuation, paragraphs and the sort so I thought I might finally be ready for an update.

I had the MRI of my shoulder that I had said I would have after Thanksgiving. Unfortunately, it showed that I had fractured my shoulder-and 4 weeks later not healed and that I had 3 tears in different places including the rotator cuff! When I saw my doctor, he was surprised about the fracture as I was, not so much about the rotator cuff tear but the others absolutely! He said “No wonder you hurt!” And I said, ” Did you think I was faking?” He of course did not, but thought that I was in an inordinate amount of pain for what he had thought I was dealing with! Actually I think the fact that I manage with the pain that I deal with at all is a miracle and be able to work too. So now that the shoulder is so very complicated, he has decided to pass me up/down to “more qualified” surgeon doctors in his practice! I guess I should be thankful as my daughters thought. I really liked him though, and now at the end of the year, I have to start all over with a new doctor. He knew I wasn’t happy about it, but advised me that anybody would insist on the fracture healing before operating.

So on to my next challenge! I had to have GYN (female) surgery on the 19th. This is NOT SOMETHING I AM GOING TO DISCUSS HERE! Surprise! I know that I have been really open about my foibles and life and all, but except to say that if I had not had this surgery, that sometime in the near future, my life could have been at serious risk. That being said, it also was terribly painful! The doc said, oh, it will be like you had a baby. Ok that wasn’t so bad except that’s when I found out I was allergic to iodine. They used to put it in a spray on solution for episiotomy incisions. THAT was much worse than having the baby! So I thought, it couldn’t be that bad! WRONG!! This is 62 like having a baby! God did not make us to have babies at 62 except as He has reminded me Sarah at 100 had Issac -in the desert and with no drugs! So I guess i need to quit complaining except that I don’t seem to be healing well here either.

Why have I shared such information now with all of you? Because I know you pray for me. So I am asking for all of your prayers… it has made such a difference in my life before… I need to heal. I know I have the immunity issue, but I wouldn’t have thought that would impede healing, maybe it is, I don’t know. The Lord has not told me He will not heal me, he has just offered comfort in other ways. My dear husband is doing his best to feed me nutritious things that will promote my healing… but like I said, the shoulder fracture was still “very fractured” at 6 weeks, so I only know to go to the Lord in prayer. 

I remind Him of all of scriptures on healing like the familiar Isaiah 53:5  …and by His wounds we are healed… This is important for all of us though James 5:16 …pray for each other that you may be healed… and 1st Peter  2:24 …by his wounds you have been healed.  But I do think the key is praying for one another. So while I am praying for ya’ll, please be praying for me!

Goodnight and God bless!

BURNED NERVES!

 

Well, I had so hoped that my life in the fast health lane and quit for a while and I do still have high hopes for it, but today, I suffered through the burning of the nerves in the facets (joints) in the vertebrae in my lower back. I had 4 nerve blocks previously, but nothing lasted very long. Having had to endure all kinds of pain in my life, I still say that nerve pain is the worst. So when I finally saw Spinal Pain Specialists associated with my hospital and introduced to me by my daughter when she was getting her own block for a herniated disc issue-totally different from mine, I was amazed by the exam  and their conclusions. And really so far the treatment has been borne out by where the last 2 blocks that they did were placed.  I just would like to change positions –in bed, in and out of a chair,  and regain  my ability to stand or walk for a while. The doctor says I will get all of this back! and Without Surgery! Today I just had some Twilight sleep, they call it. What I hadn’t expected was hurting when I woke up! I didn’t with the others,  but to burn nerves, bigger needles are used and go through muscle and  so the “side effects”. But if it works…WOW!

Prayer requests oh so many and I don’t exactly know how to write them so that they are anonymous-prayer for a dear one that all that needs to be remembered and done-in other words keep all the balls in the air at all times, so that absolutely nothing falls. for another dear friend, continued healing, someone’s dad diagnosed with cancer, for all the planned Bible Studies that will start up when school starts back, including my beloved BSF. For us to find a church home where God wants us, for my daughters-one a new job and the other a solution to her “back” problem. And for our nation, I am with Billy Graham, America can come back to God! All we need is for God’s people to pray!

G’night and God Bless!

Cindy

 

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