Gardening with Ramsay Hunt Syndrome and coping with the madness

I am learning to garden with Ramsay Hunt Syndrome and coping with the madness of this affliction. I use to think nothing of gardening all day long happily hauling 50lb bags of soil or manure. I use only the best ingredients. Up until 4 months ago, I had 4 major clients that I loved doing their displays and home arrangements. I can no longer work for more than 15 minutes at the time. In fact, my brain is sick from this affliction and completing a thought can be impossible. I have cried a bucket of tears over this mess. I love to write….write about all sorts of things…..and now it’s very hard. My arms don’t want to cooperate and neither does my brain. Why? what happened?

If you had chicken pox as a kid then the virus lays dormant in your system until a particular stress causes it to reactivate when you are around 50ish. That’s when your resistance runs out from when you first had it. Getting the booster at 50 will lessen your second bout of this virus but I did not get the booster cause no one told me to.

Along came a real stressful time in my life 4 months ago and the chicken pox virus reactivated in the nerves of my face. If the virus activates in other parts of your body it’s called shingles but when it activates in the nerves of your face it’s called Ramsay Hunt Syndrome…RHS. RHS is extremely painful causing deep ear and jaw pain. It can cause sores around and in the ear or inside the mouth. I had sores in the mouth. The sores ran along the chew line and on the right side.

On August 8th, the worst pain you can imagine began way deep in my ear and jaw followed by total face paralysis on the right side. The full paralysis lasted two months. I was shopping and felt my tongue go numb and went straight to my dr. She said my blood pressure was sky high and sent me to the emergency room where they ran bloodwork, cat scan, and mri. Everything came out ok except I told the dr my face felt numb. He said I was just anxious but I insisted something was wrong so to appease me……he sent me home with antivirals and steroids in case I was coming down with Bells Palsy.

The next morning after the ER visit….I woke up with a paralyzed face and in so much pain I was vomiting. I called my family dr and she got me in asap. She said I was on the right meds for Bells Palsy and sent me home with pain meds.

After a week, I wasn’t getting better and a dear sweet neighbor who worked for a neurosurgeon became concerned that I wasn’t getting better so she called my husband to discuss me seeing a neurologist. I owe her a lot for paying attention to how I was doing and insisting to my husband to get me further treatment. She helped us get an appointment with the top neurologist in the area and that dr knew right away that I have Ramsay Hunt Syndrome. He also said I was not responding to the antiviral I was given so started me on another which did work after two refills.

Dr. Hill said…girl….you got a long road ahead of you but we will fight this together. He said you have a bad case and it’s going to take lots of steroids and antivirals to get you  through. It’s now been 4months and there have been some ugly complications which have greatly altered my life and that of my family—and especially my gardening career. I am weak, slow thinking, and pain has persisted along with vertigo.

RHS attacks the nerve in your face that runs down past your ear…..across your cheek…and up around your eye. RHS attacked every bit of mine. Nerves only heal at 1 mm a day so think of this as at least 2 years but I know of others in their 11th year still with permanent damage.  I will be on steroids, neurontin, topamax, and xanax for at least 2 years. Because of the nerve death I have a secondary complication that is very serious called Giant Cell Arteritis–GAC. GAC is death of the arteries in the afflicted area of the dead nerves. GAC caused decreased blood flow to my right eye and reduced the vision by 75%. They don’t think I’ll get that back. GAC also affects blood flow to your arms and legs. It’s a nightmare and just plain insane but my strong faith helps me meet each new day with hope and to God be the Glory.

GAC and RHS make you so tired, make you depressed, make you fight for life every day. The meds make you a crazy person. I am puffed up from the steroids something awful to the tune of 30 extra pounds. For 4 months, I have sat on my sofa and slept or roamed the internet looking at gardens. Thinking of how one gardens when they are recuperating from something that robs your energy. Not gardening is out of the question.

I know plenty of people who would help me garden but that would take the pleasure out for me. Honestly….I don’t know anyone who gardens like me. I’ve been told I’m an artist in the garden and that pleases me to no end.

So… I am…in the midst of being very sick…sleeping upwards of 16 hours a day…and using precious hours to plan gardening. Would you expect any less of me? My husband just rolls his eyes.

I have scaled back. The GAC and RHS make my arms and legs feel like jello after about 30 minutes of work…so I will really have to plan this wisely–and rest on my swing for long periods surveying the work as it grows….inch by inch. I have started a to-do list for my husband which starts in January. I will have him put down manure and compost in the planting areas—and the vegetable garden. He can do one area per month and that won’t aggravate him to death. He hates a long to-do list.

I am planting more variety this year……instead of planting whole flats of flowers…I will do smaller areas with a variety of six packs===a perennial or two here and there. I will have a raised bed vegetable garden out back. My yard is sloped so I’ll do hay bail gardening and make a big square or several small squares with three hay bails in the back and one in the front….cause that will make it even across the top. It will be fenced in with a screen door. Probably will have a top on it too. Last year the squirrels stole my tomatoes and took one bite just to be mean.

So….how does one garden while so sick? Well….you just plan and do what you can–and what you can’t……you just let it go……..just let it go……

The photo above is from the front garden display at June DeLugas Interiors in Clemmons, NC. I had to give up her gardens this year and that broke my heart. She was my very best client and is one of my greatest friends. Made me very sad.

29 Comments Add yours

  1. Susan says:

    I too had Ramsey Hunt…….in fact we are very similar in our disease symptoms and severity. Please take heart and know that even 2+ years after, I am still improving. I have some long term/permanent changes but I am definitely regaining my life back too. please feel free to contact me if ever you wish to chat.


    1. Thank you Susan. It’s almost two years for me now and I’ve had good improvement this month. I may even get back to blogging and writing stories about the South. I am left with nerve damage and I’m still so tired. I’m sorry you had this also. It is so brutal.


  2. Anna I have been following your story on FB and am glad to see you are making some progress…your faith and fight are amazing and I am also glad you blogged about this. I work closely with my DR to make sure my immune system is up to snuff….vaccines are not good for me and I generally react worse, but I did talk this over with my Dr when I first read your story….so I will keep my immune system healthy and think good thoughts and send prayers for your continued healing…


  3. Debbie McMurry says:

    Anna so glad to find you here posting. I was so worried when I saw your fb turn off. I emailed dear Mary and she told me to come here for your posts.
    I am so sorry you are still so sick with this and pray that you get your strength and wellness back soon. Gardening isn’t the same without reading your tips and seeing your beautiful gardens. I know you will be back at it in the Spring and all your new ideas sound wonderful. Your in my thoughts and hugs to you.


    1. Thank you for catching up with me Debbie….I love that you did. I’m just not seeing well enough right now to get back on facebook. This is a much slower pace. I am really enjoying the quiet of my home and the comfort of my blog again. I had let this sit for awhile but will be writing quite a bit from it as it is now my place of voice. I am grateful you want to keep up with me and be a comfort to me as well. I need to get on the ball with my spring ideas already cause time is a wasting……lots of hugs to you


  4. My gosh, I do remember you were sick, but I had no idea of how bad. I too am glad to hear from you again and sincerely wish you the best. You did a wonderful service by posting on this. How many doctors would get the right diagnosis? I too had chickenpox, but like latebloomersshow, do not trust the vaccinations.


    1. Yes I’ve heard from many who don’t trust the vaccine and it’s a hard decision to make. I don’t judge either way but I would sure choose it over what I’m going through. I got the worst case imaginable my dr says and some recover more quickly. My immune system was wrecked for three years now since they took out my gallbladder. I just haven’t been able to get my strength back. So when that stressful time came along 4 months ago it was the perfect time for it to rear its ugly head. If you take Lysine daily…I’ve heard that can ward off shingles pretty well. I’m taking that now.


  5. Reading this now, Anna, and realize that RHS is what my part-time housekeeper’s husband, Rene, a gardener, had a few months ago. He had told me it was shingles, but, it was in his face. They were not told it was called Ramsey Hunt Syndrome. I guess he was lucky and didn’t have a bad case. He still has a little jaw pain, and mouth sores, but, he’s pretty much over it. Unless, it flares up again, which from your description, sounds likely. YIKES. I had chicken pox, as did both my sons. This is not something I would wish on anyone. However, I am very ambivalent about vaccines and don’t trust the drug companies (who are in bed with chemical companies). I wonder what causes it to go to the body or the face? What was your weight like before? Is that a factor? Rene is carrying a lot of extra weight. This past week, he was hit with pneumonia. He thought he was having a heart attack. Of course, they have no insurance, because our health care system in this country is so bad. I am assuming you have insurance, and I can see you are fortunate to have a husband who will support you through this and even put down manure for you! 🙂 With all you are going through, I appreciate that you have read and responded to my blog. I just pray your system — keep the thought in the forefront of your mind that our DNA is programmed to self heal — recovers it’s equilibrium so you can reduce the drugs and the side effects that come with them. I find garden planning clears my mind from stress, and I can now direct my thoughts away from despair and into my garden, which has been a gift. God bless you! – Kaye


    1. Kaye, I so much agree with things you say. I come from a long line of healers in my family back when they weren’t cast out of the church. They just knew the body and what to do or what would naturally heal itself. To some are given that ability. I have a healing touch to others when I’m around them. anything from the soul to the sole of the foot–I can generally massage or put a salve on and get the person in a better state of mind. I think that is why I am so strong through this sickness. I am doing a lot of mental work to get my body thiking straight. Nothing better than garden plannning to fix that. You ask about my weight….well…I had lost quite a bit and was in a normal range but steroids have put on 30 very uncomvortable pounds and caused a dowget’s hump on my back. Once off steroids, I think the moon face, upper belly fat, and dowger’s hump will subside. Right now I don’t have the strenght to walk or do arm exercises. I have to wait on the GAC to quit flaring. My immune system is attacking my arteries and inflaming them. I started a high fiber diet with loads of fresh spinach. I can feel that pulling some toxins from my system.

      Today’s eye dr appt is very disturbing so am hoping I can claim some victory over that if possible. I’m looking at 1 year on the right eye and up to 5 years on the left unless my new eating habits and positive attitude prevail. I give God the glory no matter. I stand strong for a reason even if I don’t know the reason I’m being tested. I hope to prove faithful.

      Hugs Kaye and thanks for the good conversation.


      1. Lila says:

        So sorry to hear this FG.I pray the blood of Jesus on you now dear and His mighty,mighty name restore you and HEAL you according to his riches in glory!..Psalm 91.Read it every day outloud and let it penetrate deep into your spirit.God’s word is ALIVE and there is power in it…sweetheart Steroids can destroy your eyes and lung tissue,they affect the thyroid etc…you need to get off of them.They messed up my thyroid and it’s taken YEARS to get the weight under control,they also affected my adrenal glands,that’s why you have no energy.I was even having trouble braething,they where destroying the very thing it was supposed to help! I was SO mad when I found out and No ONE had told me! The drugs that traditional medicines prescribes can do more damage than good.There are non steroidal anti-inflammatories.Curcumin is amazing it’s natural w/ no side affects and actually HEALS it’s also good for pain,MSM restored and REPAIRED my lung tissue and 5000 units of Vitamin D-3 daily repairs DNA! (this is ALL scientifically documented)but most Dr’s just follow standard protocol and don’t even think about it esp since Big Pharma reps push them to prescribe the “money making” drugs which have the worst side affects….go to Nutrition and clk on “Articles” tab and you can get a wealth of info by “searching” the illness or condition there you can also get the Linberg newsletter.This lady Judy Lindberg is a woman of God and has founded this supplement Co. You can even call her and get a free phone consult,she will even work w/ your Dr. or get you a Dr. who practices Preventive Nutritional medicine and is a not just a DRUG dispensary.There’s also Don Colbert MD and DrBrower these are REAL MD’s and they specialize in natural healing too they have written books and have a history of success in thier medicall practices.Millions of people have found healing but since there is no profit in natural alternative medicine you don’t hear about it in the media,except when they try to malign us since we are a THREAT to Big Pharma…I think God has provided healing for us in nature too and we need to be educated for his word says ” My people perish for lack of knowledge”….{{{hugs]]] and love fr a sister in the Lord.God wants the BEST for you.Never settle for anything less!:)


        1. Thank you for all the information Lila and prayers. I will look in to this and take it to heart. Hugs back to you.


  6. Your gift in sharing this experience with us has made something so ugly like Ramsey Hunt into something beautiful in the way you turn things over to God and the way you fight! I am happy to report I just had my shingles shot and it is because of your story. Thanks you for helping so many of us avoid this horror! I wonder how many you have actually effected?? Best wishes to you, Anna. I hope every day is a little better. Greg and I are praying for you and asking for a full recovery.


    1. Teresa and Greg thank you so much. I really do covet your preyers and especially today. I just got back from my eye dr and there is further damage to the arteries to that eye. The dr thinks blindness is certain within a year. They are trying straight prednisone drips in the eye as well as some anti inflammatory drops too. 6 drops a day in each eye. The prognosis is not good but God is greater so I solder on for the Glory of God. Thank you for being part of that. I am so appreciative for the following and well wishes but especially the prayers.

      I purchased the rose food you recommended and it worked marvelously. I also followed your advice on cutting in the spring when new growth just came out on the knowkc outs—I had flowers all summer long. Best advice on roses I’ve ever been given. I will write a post on it soon and give you credit. Hugs to you both.


      1. We are praying. Hang in there. Hugs!


  7. So sorry you are so sick. I will be praying for a speedy recovery. May your garden this spring be truly a healing garden. There is healing of the mind, body and soul while working in a garden. I find it comforting just looking at my garden magazines.
    Rest in God’s arms as you heal. Shirley Towe, Toccoa, GA


    1. Shirley…that’s beautiful and thank you. I am surely resting in God’s arms and reading my magazines too. I love that you said that. thank you for stopping by


  8. marymirabal says:

    It’s so nice to see you post again Anna. Have missed you friend. As a fellow gardener, I know how frustrating it is to want to be out in your garden “playing in the dirt”. It’s hard to let someone else do the work, but you must for now. Hopefully Spring’s renewal will find you once again back in your garden feeling blessed and well. Take care!!


    1. Mary, thank you—–and I am so ready to see dirt beneath my fingernails and little sprouts growing. I wanted you to know that my best friend loved the little teacup holder you gave me. It’s in my guest bath with the soap in it—and she just loved it. I might just have to order her one…shhhh….don’t tell.


      1. marymirabal says:

        So glad you’re enjoy your whimsy. Don’t worry, your secret is safe with me. Let me know if you find one you’d like for your friend.

        Take care friend.


  9. diane rincones hess says:

    prayers and healing sent your way


    1. So much appreciated Diane….prayers are the very best gift to give. I am so appreciative that you took the time to tell me so.


  10. So good to hear from you. I thought of you so often and wondered how you are doing.


    1. Thank you Rebecca….it’s going to be a long road to recovery but not so bad when friends such as yourself wish me well….


  11. Mary says:

    Love you, dear Anna. I was worried when I saw that your FB page was turned off. I knew it must be because you’re not feeling well. You are so often in my thoughts. I’m so sorry that you are having to endure this ugly condition but appreciate that you have shared your journey to help others. My best to you and your sweet hubby.


    1. Oh Mary…so good to hear from you. Yes I can’t keep up with facebook right now. I will return when I feel stronger. Many hugs to you and Dave. I always love when you stop by–always.


  12. Joan macary says:

    Please feel better, I’ll be praying for you as well.


    1. Thank you so much Joan. I really do need the prayers and it’s the only thing making a difference right now.


  13. Joey Randall says:

    Beautifully told sad but hopeful story, dear Anna. I could go on here but you well know my heart. Enough to say you are an amazing/strong/beautiful woman to artfully tell this tale while feeling so ill.

    Spring will find you well and bursting with energy, dear heart. This is my healing prayer. For the meantime, like our winter gardens, rest and heal. In forever friendship and love.


    1. Thank you sweet Joey and I love you for leaving this comment. You are so encouraging and have been following my struggles over the last three years with so much love. I have temporarily shut down my facebook page till I feel better. I needed my energy to be put to healing. I adore that you noticed I posted this today. I have not posted in such a long time. So precious that you know what gardening means to me. Yes…let us put our gardens to rest as we rest for the next season. Hugs to you.


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