What A Hard Year It Has Been!

I know it seems like forever since I have written anything. It feels that way to me too. Still, keeping up with what was happening with my daughter and myself and trying to work has been almost more than I could handle. Some days I said, “Lord, are you sure you have the right person here, to accomplish all this?” But He says I am to stay the course.

So here we are just before my daughter found out about her cancer last year. She and her husband had just married Labor Day weekend. What a joyous occasion that was for both families-close and extended! I am so proud of my daughter! She is a very strong woman. She has gone through the chemotherapy and the radiation and the surgery like a trooper. All of it was really horrendous. Most breast cancer survivors never share the nitty gritty of their walk with the general public, so they don’t know how very, very difficult the treatment and hope for a cure is. I couldn’t be there for much of it, but she called most days and we talked and prayed through it. Still, it was so very hard for her. My heart hurt so much. I wish I could have done more, but of course my own disease continues eat away with symptom after symptom. And all one can do is try and treat every symptom. 

Sometime this year, I decided if my daughter could be so strong and get through her illness, then the least I could do was to fight through mine even if I can never win the battle. And so, I have begun to treat aggressively every symptom as it appears so that I can live to fight another day! Since last March, most of my fighting was the Bronchiectasis lung disease. I would have exacerbations every month, take 10 days of steroids and antibiotics and then be well another 10 days, before it would start up slowly again. Not fun at all. My heart was giving me fits as well, so I was in and out of the hospital for that because I have severe heart disease. (the heart and lungs are muscles too). Then in late June to mid July I had four heart episodes I called them. They were like mini heart attacks. I used a lot of nitro, but didn’t go to the hospital. I really didn’t think there was anything to be done. But I have found that when I am going down for the last count, God always gets control and sees to me. I had another Bronchiectasis exacerbation and had to go back to my wonderful Primary doc. (He has treated MSA and Bronchiectasis patients up in VA where he moved from. ) He is part of the Sacred Heart System that all my docs are part of and is right around the corner and miracle of miracles, sees me the same day I call him, sick! So when I was seeing him for my lungs, my BP was high and he asked me about my heart and any pain. I told him I had four episodes in three weeks and described them. He was the one who said they were like mini heart attacks and I had to promise to call my cardiologist. I did the next day, Friday. They said they would see me in the Cath Lab on Tues!. I had THREE STENTS put in the remaining major arteries of my heart which were 95% blocked. So now all of my major arteries have a stent in them. It definitely makes a person stop and think! God has gone to a great deal of trouble to keep me alive! When I have to tell people that I have had three strokes, three pulmonary embolisms, been blue twice from asthma, once in respiratory failure from the Bronchiectasis and now have Multiple System Atrophy, everyone wonders how in the world I am still alive! I know He is simply not ready or done with me yet! I am still His Voice in the Wilderness for my fellow MSA patients online all over the world.

So I said we are treating the symptoms. If any of you are that interested in finding out all the things that go wrong with us over time, feel free to google MSA. I’m not going to go back to the things I’ve experienced in the first two years, which have been many, but I do want to talk about the things we’ve found out this week by the Grace of God!

I have always had trouble with my ears, even as a child. As an adult I have had multiple tubes put in my ears because my eustachian tubes never grew up to adult size. Then a couple of years ago, I didn’t pass my hearing test, and I got a hearing aid. Still, I have problems understanding what people are saying when I am straining to hear them. And my ears stop up a lot, one has tinnitus which is very annoying at bedtime. I found a great new ENT with great references, unfortunately an hour away, but it seems that most all of them are. I saw him two weeks ago. He set me up with his Balance Center and his audiologist doctor. First, let me tell you that I have had balance testing at Mayo. This balance center was so much more than anything I have ever had in every way. I can’t even begin to explain unless you have had balance testing, so that you would have a point of reference like I did. It was shocking to find out that my ears do not work with my eyes in anyway to help me walk or balance. There were many tests performed to confirm this. Then we also found I have positional issues. (I had suspected that-had it before) But this time their testing so complete that they could show me that my eyes don’t work well together either. This is new, I hope. They say it can all be fixed!!

Then I saw the audiologist. Of course my hearing is worse. It has been two years. But even worse is that my ears don’t work together. I have asymmetric sensorineural hearing loss. Big words I know. But bottom line is that when one has that condition usually one has a tumor on the brain stem. So next is testing for it on Friday the 27th, then if it is positive an MRI right away. I understand that most all are benign and called an acoustic neuroma, vestibular schwannoma, or a meningioma. OR my MSA support group informed me, this could also just be MSA cranial nerve pathology.

If anyone else had gone through all of the trials and tribulations I have gone through without Jesus, I am sure that they would be crazy or dead by now. I still have to say, “Thank you Jesus, for thinking I am up and worthy of this.” Believe me when I say, this is not anything I would have chosen for my life. I have prayed so much for healing each time something new came into my life, but now I just think, one more thing. I thank the Lord for carrying me through this when I am so weak I can’t talk, hardly breathe, or hurt and now am so dizzy. In the last exacerbation, I think I fractured the same rib as last time, but we didn’t do anything about it, because the docs don’t. I just try and suck it up and take Tylenol and hold a pillow when I am coughing now.

Continue reading “What A Hard Year It Has Been!”

A Quick Note…

My husband and I will be with my daughter Laurel and her husband Jeff for a time starting next week. She has her cancer surgery on Thursday. Please pray it will go well and that they will get it all! And pray for my husband as he tries to care for me and Laurel’s need’s while her husband is working so that their insurance will continue. This cancer treatment is very expensive and they are only insured through his insurance!

Last weekend as I enjoyed my  time with my girls,  something happened in my body overnight Saturday night. I woke up with severe onset Ataxia again (spastic limbs) and my shaking tremor greatly increased. I had a CT last week to see if whatever it was in my brain. Or it just could be another acceleration of my MSA. I know many of you are praying I will get better. Unless God does a real miracle and cures me, I won’t get better. I will continue to go down hill until He takes me home with Him.

I may not have written of this, but I told my kids and my husband and others in my family: when I was so sick a month ago, I really went to the Lord and asked again, “WHY must I bear this, Lord?” He said, “I was to be the voice in the wilderness.” You see, not many of my group, have Eternal Hope, have faith. He said I was the only who told anyone who was crying out for help in desperation, how to come to know Him. Everyone else is praying that has faith, which is great,  and maybe why I am here. I am God’s answer to their prayers. I told Him it was too big of a job for me, for one person, and me sick too. He replied, “In your weakness, is My strength.” And so we go on. Now we all know exactly why He has kept me alive all these years. I am very privileged and honored, but as you can imagine just walking on faith. Kind of like the movie with  Harrison Ford as Indiana Jones having to step off the cliff in faith, and the stones came up, one by one to take him across the ravine to the last Knight, who was guarding the sacred chalice. You probably know the film and the story, “Indiana Jones and the Last Crusade”.  I understood what he was doing right away as I felt I had been living like that for a long time. Au contraire! I had no idea…


Something I was sent …

I hope I can upload the link:   https://www.crystaltwaddell.com. Yay! This tech challenged old lady did it. One of the best sites I’m come across in a very long time. I highly recommend you check it out!! She has many guest bloggers, many different subjects, but most importantly is a HOPE writer, like me.

Please check her and her many guests out as you have a chance. I have really been blessed.





What A Month!

Last time I wrote, I was begging for prayers! We still need them, but I wanted to tell you what God has been doing, because He is listening to all of you. I thank you so much and so does my daughter.

The last week of February, my regular asthma and Bronchiectasis really kicked into high gear and I was in the ER twice. I have  also been hit very hard with low thyroid numbers all of a sudden. Yes, the dreaded MSA has attacked it. It is an organ too! I had no idea that the thyroid controlled so much of a person’s well-being (heart and lungs, but also extreme fatigue, the arteries and veins in your legs working well/or not!) I was sleeping 14-16 hours a day and it wasn’t enough. It was scary. I spoke with my provider and found out that the medicine doesn’t even start working until you have been taking it for 6-12 weeks! I told him I might die by then. I hated being so dramatic, but I have never been so weak and that was scary.  But then, last week I finally was able to see my pulmonologist and he put me on a higher and longer dosage of Prednesone than the ER had done. So far, that has been great. Lots what my husband calls false energy. Whatever, I’ll take it. I have been able to work again, finish up my doctor’s appointments and tests, even go out to lunch with my Sunday School ladies (which is a rare thing). Loved it! 

As for my daughter, she let me pray for her last week while we were on the phone before her last chemo appointment. What a privilege it is to pray for our children, really all our loved ones. They tell her the tumor has shrunk dramatically. I say Hallelujah to that! Now she is resting her body and getting ready for the major surgery she has to have on April 4th.  I would ask that you all circle that date on your calendars and keep her in prayer please? This is a long, very involved surgery. I don’t want them to find any surprises and it to go well!!

She and I had a rather long conversation on the phone today. We were able to speak of so many subjects close to both our hearts, I think.  It’s amazing that we are sharing a lot of the same symptoms too, even though our issues are so different. Still, I can’t help but remember 2 Corinthians 1:3-4  “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort; who comforts us in all our affliction so that we maybe able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God.”

I may have mentioned that I am involved in an online Bible Study through Bible Study Fellowship International. I haven’t been able to attend since moving to the Panhandle because the location was so far away, even when I did drive. We have ladies of all different ages and backgrounds and places in the US that wanted a Monday 4 pm study like I did. I am so grateful for them as well. They have been so faithful to pray for me and for my Laurel. When we have prayer requests in our group, we actually do pray them and guess what? God Answers! What a great blessing it has been to see our faith and prayers in action come to fruition.


Please Pray!!

Laurel had truly bad reactions to her chemo drug last week, so they are starting her on a new one this week. Please pray that she won’t react to this one. She needs the chemo to kill the cancer cells. The tumor is shrinking, but not enough yet.

I have been praying that God would reveal her purpose in this to her, but she has to listen to hear Him! She knows that so far, she has been blessed and it hasn’t been as bad as many others have had it. Still, this one drug is so important.

So please pray with me that she will be still and listen and that she won’t react.

Thank you!


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!


What A God Of Miracles!

The last time I wrote, my youngest daughter had just been diagnosed with breast cancer. Since then, in very short order, she has seen the breast oncology reconstruction surgeon and today, the oncologist. They’ve told her that even though it is stage two, it’s a very aggressive cancer. She is going to go through 20 weeks of chemo which will be very strong with two different meds. The first month to eight weeks every other week they will be letting her body rest between sessions. If she is holding up well, they increase to every week until they are done. Then she rests her body for a month, before having the first of several reconstructive surgeries. Once they are done, she has 12 weeks of another medicine she needs and then she starts radiation. The doctor told her and her husband that she thought they would be done with this before their first anniversary next September!  Yes, that is a long time, but they have to get the tumor smaller and she will also have a PET scan this week to see if the cancer has moved beyond her breast. Once all the work is done, she will take Tamoxifen for five years.

So you may have read all this and wondered at my title. It is literally true though in that the lump was found about a month ago. I know it is just about impossible to get a mammogram, then an MRI, and a biopsy and a meeting with the top breast oncologist reconstruction surgeon in Atlanta–who also told her it would take a week or two for her to see the oncologist–but somehow, three business days later she is meeting with the oncologist who wants to start her life saving treatment next week! This gives her time to have a port put in (surgery tomorrow) a brain MRI, a PET scan and an EKG!

Yes, it is going to be a hard first year of marriage and of treatment. But I know my Lord who gave her both physical and eternal life has her by the hand and will be walking, sometimes carrying her through this. And then through the following years with meds and follow ups and tests. It is hard. I walked a similar path long ago and I didn’t have anything like she has, but you still wonder has it come back every time you have something wrong with you again. AND YOU KNOW I ALWAYS HAD SOMETHING GOING WRONG!

As for me, I just know that somehow God will keep me together for her. For the first time in years, “She needs her mama.” So I am working hard on my physical therapy and have asked for speech therapy help. It will help me with my swallowing and choking problems when I eat and well as some voice issues. Just part of the disease…

What I am asking for–begging for— are your prayers for my daughter, first and foremost. Then secondly that both of us as her parents will also hold up and be able to be there for her and her husband.

Thank you,


No Good News Today!

My youngest daughter, the child of my heart called me tonight to let me know the results of her breast and lymph node biopsies. I am so sorry to say that they called early this evening to let her that she has cancer. I knew this was coming because I spoke with God about it last week and He told me that He and she were going to walk a hard path for a while. Still, you hope and pray for a miracle!

Her tumor and the lymph node are large and very involved. She said that the doctor wants to do chemo and radiation before taking anything out. Frankly, she is scared to death! I understand. She is only 42 and newly married. 

Still, I told her that God is on HIs throne. That she had to turn to Him for comfort and understanding and peace. There is NO PEACE without Jesus Christ! She has faith, but I tell you from experience that this is a different, harder walk than anyone can imagine except those who have gone through it. If it were not for Him, I would have NEVER survived all that I have!! And believe me at this moment, I would take her place so that she wouldn’t have to go through this. But God said I mustn’t interfere in their relationship and how it will grow and be close like mine and His. I would never sacrifice all the lessons I have learned through my own trials to get to the point of our relationship too.

This morning’s devotional said that the more praying we have in our world, the better the world will be and the mightier the forces against evil everywhere. Prayer for me is just talking to my Abba Father as He promised to be when He took my dad to be home in heaven with Him. Believe me when I say that since this started 10 days ago/2 weeks? I have been praying constantly, either by voice or Spirit. All I am asking of those who read this post that you be praying too. Her name is Laurel.

Some Things I Learned Recently

This is a very hard post to write. I’ve learned some things recently that are being taught in Bible classes and churches. As a result, I have done a study on what exactly the Bible says about each idea. I realize I don’t have a lot of time to perhaps keep your interest if this isn’t for you or you don’t agree. But I am compelled to write this. I don’t get up easily at 5:30 AM unless God won’t let me sleep any longer. This is one of those mornings.

In studying the Bible, of course I have learned of God’s “predestination” of the saints. I don’t believe that this means He chooses some to be His and some not to be. He has given EVERY created being free will. WE ALL HAVE TO MAKE A CHOICE. FOR HIM TO BE OUR GOD, TO ASK HIM TO FORGIVE US OUR SINS, ACCEPTING WHAT HIS SON JESUS CHRIST DID ON THE CROSS, (DIED FOR EACH PERSON WHO WAS EVER BORN) AND AT THAT MOMENT THE HOLY SPIRIT OF GOD COMES AND LIVES WITHIN YOU. John 3:16-17 says “For God so loved the world, that He gave His begotten Son, that whoever believes in Him should not perish, but have eternal life. For God did not send the Son into the world to judge the world; but that the world might be saved through Him. When I look up the word world, that means everyone who has ever been or ever will be born. EVERYONE. So as some would say, there are elites or chosen, that really no one has a clear choice at one time in their lives to choose for Jesus Christ. The Word of God says everyone has a choice, over and over and over. To not have a choice means that taken to their logical conclusion, that even hell and all who suffer there eternally are foreordained by God. God is so rendered morally ambiguous at best and a moral monster at worst. I believe that it is everywhere free will is assumed in the Bible. It is necessary to preserve human responsibility for sin and evil and it is necessary to preserve God from being responsible for sin and evil of any kind. 

Some will say  “Well, if God created all things, He must have created evil.” NO!! A thousand times no! To say so is to take away the impeccable nature, the pure righteousness, infinite love and grace of God. So where did evil come then? You may remember the story of Lucifer, the created angel of light. He wanted to be like God and have the power of God. So he chose to lead a rebellion in heaven with many other created angels, who also chose to follow Lucifer. There was a battle, but of course God and His mighty angels who chose God won as they will every time. Lucifer and his band were cast out and HELL and the Abyss was created for them. God did not create it for people, but in His foreknowledge, He knew that some day people He would create would not choose to accept HIM as their God or His Son as their Savior. It is not that HE chose, but that we all make our choice. So God allowed the entrance of sin and evil into His good creation but did not cause or coerce.

I believe that it is very important to write this as some might believe that God has sent evil or just bad things in my life to bring me to Him. I would say to that, “Absolutely not!” I have said many, many times how my Lord God has taken care of me in spite of my hard headedness and strong will. Yes, I do believe that things, many things really bad or hurtful in so many different ways happened to me because HE allowed them as way to make me see I am absolutely nothing without HIM and how much I needed HIM as my Savior and my God. Sometimes, little children come to God and they don’t go through all these things. However, I know how stubborn I was.  I didn’t want anyone including God to tell me what to do. I could have turned away from Him in anger and hate with all that has happened to me. I chose to go to Him. He always knew that eventually I would. He is God and knows all things including the future. But it was my choice. It is still my choice every day whether I follow Him by studying His Word, by speaking and listening in prayer. But He has given me the  peace I can have regardless of how sick I am, what is happening in our family or extended family or my business world or the world as we know it today. I know it is there for me, but I have to reach out in trust and thanksgiving to Him. He never leaves me. It is me, when I am in sin, that walks away from Him. Again, my choice.  But how wonderful it is, when I walk back to my Savior and say I am so sorry. I know I have already been forgiven of every sin I have ever done or ever will do. That work was done on the cross by Jesus shedding His perfect blood for me. Still, the Lord expects us to be salt and light to the world. How can we, when we are behaving as the rest of the world does? Sometimes that is my sin. I want very much to be salt and light to the world He has given me to speak to and participate in and with. But again, every day I make that choice. Doesn’t mean He loves me any less or more bad comes my way, but you see now that I have tasted of the Source of Peace, I can’t do without it.

If you disagree with me, I would urge you to ask God to show you all His scriptures concerning our choices. In every case where it talks of God wooing or drawing, there is text above or below that talks about choice. Read the whole thing. Don’t just take a scripture here and there and make a doctrine about it. The books of John, Romans and First Corinthians are great starting places.


Asthma and a Hurricane

In case I haven’t ever said, I live in the Panhandle of Florida. That’s right! Where we had a tremendous hurricane last week. From what we have seen of pictures south/west of us and then east, we know that we were truly spared. Foolishly, I thought since my home that was God-given and was only two years old, it would sustain against those winds. I was shocked to read this morning of the different building codes in Florida. Only South Florida is required to build houses or buildings to stand up to such powerful storms!! If ever a storm enters the gulf again, that even looks like it’s coming close, we are going to be smart and evacuate! We are not in an evacuation area, or flood zone, but obviously with the damage done by this storm, it would not have mattered. I know there are still a lot of people missing, especially in Lynn Haven and Mexico Beach. Please pray that they are safe. The first responders are still finding people in desperate circumstances every day.

I also mentioned my asthma. Hurricanes brings low barometric pressure which apparently my lungs don’t like at all. I couldn’t quit coughing, my blood pressure was up and down. The week before, it had been extremely low. Now it was fluctuating, but my highs were on the bottom, which I know aren’t good and hurt my head! I was so thankful when my home healthcare service called and said they were sending a nurse to check on me. I had tried to reach my doctor, but his office was in Panama City by the hospital and I don’t know if it is still standing.

This was a new nurse to me so she had a lot of questions. I just kept coughing. When she finally listened to me and couldn’t really hear me moving air, she insisted that we go to the hospital. Last thing I wanted or felt like doing. My regular hospital was only taking trauma or stroke victims then. So we went. I have to say that first rate healthcare is something we take for granted in our country and we should not. At least I have always gone to a great hospital that could see to me right away. If I had not had my own oxygen, I don’t know what I would done as it was 2 hours before I got any treatments-even a breathing treatment! I hope I don’t have to go back. I am grateful for the medicine I did get. I did have to tell them what to give me though. What an interesting experience. It certainly made me thankful!! And thankful that the nurse made me go as I was sicker than I thought.

That was last Friday. Today of course is Tuesday night. I was finally able to see my new PA with the office where I get my Xolair. It too had been delayed by the storm, so I don’t get it until tomorrow, three weeks late for many different issues! Something else that definitely contributed to this. I have to say that she was one of the most thorough PAs or doctors that I have ever spoken with. She checked every one of my medicines for interactions and for cardiac issues. It seems that my heart isn’t a whole lot better than my lungs unfortunately! My husband has congested heart failure and with Entresto, they have been able to get his heart refraction up to 50%. I was told that mine is 57% from my last Echo Cardiogram. So now we know why I have the overwhelming fatigue! Between the two, I definitely don’t get enough oxygen anywhere! 

STILL, I must say, my LORD GOD is in control! I am not panicked. I am at peace. I can work a little as a I get better and I can continue my Bible study and my writing. Even more, I can love and pray for my family and friends and extended friends.