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!”