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!”
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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

Full Disclosure

I had my heart procedure yesterday and guess I wasn’t up to writing this when I re-read it this morning. I have corrected my writing!

The last few times I have written I have alluded to more health issues than I wanted to go into. Last Thursday, I got my DaT scan from Mayo. It is the definitive test for Parkinson’s or Multiple System Atrophy. I have Parkinson’s. Mine seems to be the slow growing kind, thank the Lord. Some people have the aggressive kind and degenerate quickly. My local doctors once told, both said that now everything about me made more sense! All I know is that the brief amount of time that I’ve had to read about it, I do fit with the symptoms. Some I didn’t even want to acknowledge. But they are all there. I don’t shake much because I take an awesome medicine named Primidone that really works for me. I do have some bad days where I seem to shake a lot, but up until now, I’ve just taken another pill. We always thought it was Essential Tremor, but when I read about that, it’s only on one side, one limb. Unfortunately for me, without meds, my whole body shakes. But all the other things you’ve read from my writings, the dizziness, the falls, the fainting, the orthostatic hypotension, post orthostatic tachycardia, and other things I won’t mention are all a part of this.

Everyone has been asking me how I am. I am completely fine, actually relieved! It’s nice to know what’s wrong with you-that you aren’t nuts!!! Even 3 years ago when I wrote about the Ataxia, that was a symptom. I don’t why the local docs didn’t put it altogether, but I am ever so glad for my neurologist in Panama City who did and who has now moved back to Mississippi! I will meet one of his associates for the first time next week and we will decide where we go from here. One wonderful thing is that Mayo has a huge research center for Parkinson’s and they are looking for volunteers-don’t know if they’d have me of course. But at least they have Parkinson specialists there. Another note is that Parkinson’s is a muscle disease. Lungs are muscles, so no wonder I have more trouble with my lungs than just asthma! And the heart is a muscle too of course. I guess that’s why I have trouble with it too.

Tomorrow I am going to the Cath Lab for my second time in less than 2 years. The doc admitted that I have serious heart disease. Not my fault, it’s genetic. Both parents and all four grandparents had heart issues too. Plus I am allergic to the Statin drugs for cholesterol and mine is sky-high regardless of diet.  It will be strictly the Lab, I can’t be carried off to the operating room even if I need it. My lungs won’t stand that kind of operation. So the Lord is going to have to really do some work on me-miraculous work. Say a prayer for me tomorrow ok? The procedure is a 7 am Central time.

So how did things go? I did have complete blockages in some very small arteries  that they couldn’t stent. I also had a partial blockage in a larger artery, but apparently not enough of one to stent. Still all said, enough to make me have the chest pain and breathlessness that I have been having. The doc said he’d be prescribing some additional meds for that. To me, things came out great! I certainly didn’t want to add to my stent count! But it was a wake up call that I need to get back to my physical therapy and recumbent bike riding.

One Psalm that kept running through my head through all of this was Psalm 100:

Shout joyfully to the Lord, all the earth. Serve the Lord with gladness; Come before Him with joyful singing. Now that the Lord, He is God; It is He  who has made us and not we ourselves; We are His people and the sheep of His pasture. Enter His gates with thanksgiving, and His courts with praise. Give thanks to Him; bless His name. For the Lord is good; His lovingkindness is everlasting. And His faithfulness to all generations.

Cindy

 

Squeezed In A Visit To Atlanta!

My baby sister had her 50th birthday last weekend. Her husband decided to give her a very big bash and so many friends and family joined in the celebration. 

We arrived on Wednesday so that I could lunch with my younger daughter who has her wedding to an awesome young man happening Labor Day weekend. She had a list of things for me to complete/find for her still as well as getting to go to her dress fitting and alterations. So thrilled!

On Friday, we met my sisters for mani/pedis and massages and lunch! It was so awesome because Laurel needed commitments from each of them for help for the wedding day set up. Of course she got it, but she had been anxious. I am so excited that she is seeing that adoption has nothing on blood when it comes to times like these. We are family!! (for more information refer to my blog post Child of My Heart)

Friday night we had a big family dinner at my first-born daughter’s home. Even my nephew/his wife/children and my niece were there. I couldn’t help but be euphoric the whole night at everyone in one place, celebrating Holly, my sister, but also my daughter’s wedding to come. Just enjoying being together as family.

I realize that so many families do not celebrate each other. They are not close at all. If you are one of those, then know that you are part of God’s forever family. WE would have welcomed you in that Friday night or Saturday night at the official celebration. Because of my brother-in-law’s careful investigation into our family genealogy, we found out that our family history goes back quite a ways and some people might consider it quite stellar. I on the other hand, could only continue to say “thank you God that I am in YOUR family, no other family matters!”  Because in truth, that is so! All that is really important is who we are in Christ Jesus. WE ARE HIS RIGHTEOUSNESS, He says. I don’t think I am sour grapes on this, just looking at heaven, because the things of this earth are a whisp of smoke. I believe I’ve written that before too! I do believe it!

So scriptures tonight are abundant as many spoke to me during this time.

Psalm 42:1-2  As the deer pants for streams of water, so my soul pants for you, O God. My soul thirsts for God, for the living God. When can I go and meet with God? 

Philippians 2:15  So that you many become blameless and pure, children of God without fault in a crooked and depraved generation, in which you shine like stars in the universe.

Proverbs 3:5  Lean on, trust in, and be confident in the Lord with all your heart and mind and do not rely on your own insight or understanding.     

Isaiah 30:15  For thus said the Lord God, the Holy One of Israel: In returning [to Me] and resting [in Me] you shall be saved; in quietness and in [trusting] confidence shall be your strength. But you would not.

God says “Remember, I made you in My Image, and I hid heaven in your heart. When you yearn for Me, it’s a form of homesickness, as heaven is your true home. Seek ME and you will find me. (Jeremiah 29:13) 

G’night

Cindy

Back Home!

We were gone for 12 days! I can’t remember being gone so long from my home before! Yet, it was a renewal in so many ways for us as a couple, for me to see God’s continued faithfulness, for me to expand my abilities physically. 

When I last stopped writing (because I was having trouble with posting on my IPad), we were to visit Chimney Rock the next day. Still on oxygen and my walker, we were told I would have to walk almost 2 complete football field lengths to get the elevator from where the shuttle had dropped us off.  All I knew was that I had to try!  So very slowly and carefully, across uneven terrain, I finally made it to the area where they had built an elevator shaft into the mountain to take us up to Chimney Rock…as we went out to the site and I saw the river below and all of God’s great abundance of creation, I was almost brought to my knees! It was so beautiful! And how Chimney Rock is carefully placed upon another smaller rock and balanced can only be something God did! My husband was able to climb the stairs to the top of the Rock and see everything. Still, when he came down, he told me that what I had seen was the same view as he had!!

As we slowly made our way back to the shuttle, another couple with children who had apparently watched my progress up and down with interest, asked me, “Was it worth it?”  “Of course it was,” I answered, so proud of myself that I had accomplished so much (for me) and that meant I could have future goals too. (We’ve already begun to set them by the way–I intend to live a while, the Lord willing)

So my devotional that day was about self-pity!!  This little bit I will add to this post: from Jesus Calling by Sarah Young. Your only hope is to look up and see the Light of my Presence shining down upon you…You can reach up and grasp My hand. I will pull you out into the Light again. I will gently cleanse you, washing off the clinging mire. I will cover you with My righteousness and walk with you down the path of Life.

 Scriptures:  Psalm 40:2-3 he lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord.

Psalm 147:11 The Lord delights in those who fear him, who put their hope in his unfailing love.

More coming,

Cindy

SEEING GOD’S GLORIOUS AMERICA

I am traveling on a trip that God has been so gracious to give us. I have to admit the first couple of days were hard. My husband was so very tired that except for going to the top of Lookout Mt. we cancelled our other plans. We did have a fabulous dinner last night downtown in a little Bistro I found online. Fresh trout grilled smoky with some grape tomatoes and herbs. Probably the best way I’ve ever had trout!

Today we traveled through the gorgeous North Carolina mountains. Everywhere I looked I could see our Lord’s creative hand! For the next 3 days we are staying in Asheville. There are so many places to see! Tonight we were referred to a Grill  to too far away. Dennis had a 14 oz prime rib! I haven’t seen him eat that much meat since before his heart surgery 11 years ago! And I had really great lamb chops! I ate more meat than I ever do. It was like we were starved for meat.  Great meal.

Today we go to the Biltmore Estate. Sometimes I guess it’s good to be disabled and senior. Our tickets were so much more affordable. A blessing! Looking forward to our day!

Today my scripture is from Psalm 89:8  “0 Lord God of hosts, who is a strong Lord like unto Thee? or to Thy faithfulness round about Thee?”  See everywhere in scripture it speaks of our faithful God. I am living proof of that as are so many, many others.

Have a great day!

Cindy

A BROKEN WRIST…

…Is all I suffered when I fell almost 2 weeks ago! I was on a short step-ladder, hanging my beloved pictures we have collected from our travels. I was coming down and got my foot tangled in the second step! Back, I went on the tile. I hit hard on my tailbone and my left wrist and arm. Just glanced my head! Off we went to the hospital. I was so protected in this fall. I could have broken my neck, my spine, or damaged my arm worse. 

When I can see past the pain of the wrist, I am reminded of all the service people in our armed forces who come home permanently without a limb. Being left-handed, it has been extremely difficult to fix my hair, do my makeup, take notes for my job, just being on the phone and trying to type at the same time! But at least my wrist will heal, my tail bone will eventually heal, our wounded warriors sometimes never do.

The apostle Paul said in writing Romans 8:18 “I consider our present sufferings are not worth comparing with the glory that will be revealed in us.” I am trying to remember that.

Cindy