Sunday, March 8, 2015

Never Saw This Coming

by Leann

For those of you who do not know, I have been battling several "invisible" illnesses for a long time. Late in the 90s, the diagnosis was fibromyalgia, then came Chronic Fatigue syndrome (which has a new name to eliminate the idea this isn't real and is abbreviated as ME). Research now shows both of these are neurological in origin (NOT psychosomatic), but no one has the answer--despite plenty of snake oil salespeople saying they can cure these illnesses.

About 2005, a blood test hinted at Lyme and then a comprehensive test sent to California confirmed it. I also had multiple co-infections and ended up being on antibiotics for almost two years. The side effects were awful, but I thought this was the answer. My blood tests were below "symptomatic" levels for about a year and then they weren't. Back on antibiotics. So why didn't I feel better? Why did I have so much pain and so much fatigue? And why, when I had my gall bladder out, did I nearly die? (That was super scary and the poor care I received in the hospital has made me phobic. I never want to go under anesthesia again!)

But the fatigue and the pain kept getting worse. This past year, I developed double vision, trouble swallowing and terrible neck pain. I thought it was the Lyme or one of those other mystery illnesses. Then I went for my yearly eye test and mentioned the double vision. (It was intermittent, but was happening every day for short periods.) My nerdy (wonderful) optometrist was able to create the double vision in the office by making my eyes work extra hard. She promptly sent me to a neurologist. I had many tests, most of them inconclusive, but the neurologist felt that I might have myasthenia gravis. He put me on the medication that has been used for this autoimmune disease for almost 50 years.

Trouble is, this medicine is very hard on the stomach. I had to gradually increase it and take another medication along with it to combat the side effects. (Almost everyone has the side effects, not just me). The good news is that my neck pain is gone, the difficulty swallowing is gone and the double vision has been reduced dramatically. I have been unable to increase the medication to the correct dose yet. So perhaps in the future, all the symptoms will go away. The fatigue is better, too. But it's still there, always lurking.

This is a story of never giving up hope that one day, all these problems would go away. Have I seen my share of quacks? Oh yes. Have I felt like some doctors don't want to deal with this? Yup. But here in a small city, I found two doctors who were willing to go the extra mile and work on finding answers. That has been uplifting after years of disappointment, pain and confrontations with folks who wanted me to just go away. So, if you have a problem, my advice is to never give up. I never gave up on getting published, either. I guess I'm just stubborn, but I stayed true to myself. This is why I only write one book a year. And now I have one piece of my own very personal mystery. Thanks for reading my books. Writing has kept me sane!

68 comments:

Aurian said...

Thanks for writing them Leann! And I do sincerely hope one day you do find the right cure for whatever it is that is ailing you. I hate those medicines where the side effects are worse than the illness they are treating.

Anonymous said...

Oh Leann, I'm so sorry you've had to go through all this agony. But I'm really glad that you found two very caring docs who took you seriously and really tried to figure out what is wrong. How you can go through all of this and still take care of high-needs fur babies is astonishing. By the way, how are all of them? Haven't heard in a while. Cordella

Jen Scott said...

Leann, I am so glad you found doctors who were willing to go the extra mile to help you. It is terrible you had to go through so much. I hope you find more ways to combat the illnesses and side effects of the medication. You are a fighter! :)

Gram said...

Toni Bernhard has a wonderful blog on living with a chronic illness. She also wrote a couple of books. A former lawyer and law professor she has not been able to work since a "virus" never went away.
Chronic illness is not always understood as it doesn't "show". Good for your neurologist!

Historical Reminiscing with Marilyn said...

I sympathize...so many things are caused by multiple problems and undiagnosed for years...way too late...Acupuncture is something I found that wasn't snake oil and really revs up your immune system...
Marilyn

Alison Marable said...

Thank you for sharing this. Hopefully this posting can educate others about "invisible" illnesses and the stresses of navigating the medical system.
I am more than happy to wait a year for each one of your new books. It is well worth the wait!

Laura K. Curtis said...

As another sufferer of neurological ailments and undiagnosable autoimmune disorders, let me say to you what one of my brothers said to the when he was finally diagnosed with Parkinson's: "welcome to the broken brain club."

It never ceases to amaze me how many of the very same people who would test three brands of plastic wrap before selecting their favorite simply accept what the first doctor they see tells them, even if it makes no sense to them. Good for you for your persistence and refusal to settle.

Congratulations on having a name and a medication. With a little luck, your body will learn to tolerate the med and you'll be on your way to a semblance of normalcy.

Teresa Kander said...

So sorry that you've had to go through all of this for so long....but glad that you are finally getting some relief and some answers. Hang in there! Makes me thankful that, although I've had a rough couple of years, at least I've always known what I was facing!!

Diane LaBrie Leverson said...

I'm so sorry you have been going through all this for so many years. It sounds like these new Dr's well not rest until they can help you. One book a year is fine with me. Your health is the most important thing. Bessie, my cat, says Hi to all of your babies.

Leann Sweeney said...

Thanks Aurian. Yes, this is a tough medicine! After writing the blog, I upped the dose a quarter of a tablet without it causing me any side effects. I will keep trying! (while I stay very close to a bathroom!!) LOL.

Leann Sweeney said...

Thanks Cordella. They are doing awesome. I got a new computer so I haven't quite figured out how to post pictures yet, but I'm getting there! Lynley, who is ADORABLE gets snipped tomorrow. Poor baby!

Leann Sweeney said...

Thanks Jen. I have been a fighter since I was a kid, but it's funny how that story plays out for decades!

Leann Sweeney said...

Thanks Gram. That's why I am so happy I can still write books. Had to take early retirement from my day job in 2005. I was so fatigued, I was afraid I would make a mistake that could cost someone their life. It was the right choice! Thank for the info on the blog. I will check it out!

Leann Sweeney said...

Thanks Marilyn. I did try acupuncture, but I think it didn't work because at the time, I had so much going on and didn't realize it was my brain that was being affected. I might just try it again!

Leann Sweeney said...

Thanks Alison. My "adventures" with doctors could probably take up about 5 blogs. But it's all been a lesson in listening to the voice inside that says, "No, you are not crazy, even if some people think you are." I was a very high energy, do everything kind of person before this all started. Maybe I can get back there with these doctors' help!

Leann Sweeney said...

I am so sorry Laura and I can say with complete honesty I know what you are going through. Our bodies tell the truth and sometimes I believe it's the most honesty I have every encountered, even if brutal!

Leann Sweeney said...

Thanks Teresa. So sorry for whatever you have had to face. Our bodies sometimes tell us the brutal truth even when a doctor cannot take the time to work away at whatever it that truth is!

Leann Sweeney said...

I have truly been amazed at their dedication and willingness to try EVERYTHING! Say hi to Bessie for me! Lynley, Wexford and Rosie are busy playing!

Jeff Cohen said...

Oh, for goodness sake--fine! You can have your chair back!

Carol B said...

I'm glad to hear that you now have a (hopefully correct this time) name for what you are dealing with, and one that seems to be responding, even if not just the way you would like for it to. I'm sure all of us who love your one book a year are glad that you are such a fighter! I wish you continued good luck with your new medication!

Marlene Ezell said...

I am sorry also that you have had to go through this. I am very glad that you chose to write and share your talent and imagination with us, the readers.

Mary Holshouser said...

That's why they call it the "practice" of medicine. So glad you were finally able to find someone willing to do more than "practice". It's very frustrating when doctors won't take us seriously. Hope you feel "all better" soon.

Leann Sweeney said...

Love you Jeff.

Leann Sweeney said...

Thanks so much Carol. Readers and facebook friends have always been there to make me smile. You have no idea how much these friendships mean to me. :-)

Leann Sweeney said...

Thanks Marlene. Writing and wonderful folks like you have kept me sane--because there were times I thought I was losing my mind!

Leann Sweeney said...

Thanks Mary. I had one doctor who was about to take away a pain medicine that was helping--not a narcotic, but it worked. He was so condescending and mean. Then the Lyme results came in and he ordered a damn anesthetic for me--ketamine, one of the drugs that killed Michael Jackson. I never took even one. He was an idiot and I changed doctors after that. Pain I can handle. Idiots are another story! :-)

Linda Murray said...

Leann, thank you for telling your story! You are an inspiration. I understand a little of why you write. Those of us who deal with chronic illness or pain often find a way to escape (it's a way to sort of change our world for a little while). For me, it was art. A way to express what existed underneath the pain, because the pain or illness is something you have to deal with, but it isn't YOU! I wish more people could read your story and gain strength from it. You are in your own way a wounded hero!

Linda Kish said...

I'm glad you finally have a diagnosis that fits, albeit a tough one, and can start on the road to stability in your condition. It's always tough with chronic illness. At least you have providers that listen and care.

Anonymous said...

Thank you for sharing and for never giving up! You are an inspiration! Please keep us posted. Take care and may God bless.

Leann Sweeney said...

Thanks Linda. I'll bet your art is awesome! I hope people will read this and gain a little insight. Everyone has SOMETHING they are dealing with. But we need to talk about it!

Leann Sweeney said...

Thanks Linda. It is a life sentence but at least there is medicine for this one and it's actually working. I am so grateful to my nerdy, sweet optometrist. She sent me to the right place. It took 2 minutes in her office to see there was a real problem with my eye muscles. 2 minutes!

Leann Sweeney said...

Thanks Pat. I will be just fine!

Annette N said...

Leann, I appreciate your stubborness. I appreciate your one book a year. I appreciate you. And since you have found the path to help, I hope your adjustment to the medication does not take too long. I understand about dealing with some doctors. I believe most are dedicated to healing, but there are some who have begun to believe that they are God. Too bad we are unable to call down a handy lightning strike when we need one. Take care and God Bless. I am going to ask my prayer group to pray.

Leann Sweeney said...

Thanks so much Annette. Folks like you have carried me through some pretty dark times. I am in such a better place now knowing someone actually cared enough to look beyond the obvious. I am feeling so very grateful and if I don't get completely well, my heart healed a little bit thanks to the doctors here in this small city.

Zena Weldon said...

Thank you for sharing your experiences. I've often wondered why doctors seem afraid to say "I don't know. I believe you. I'll do my best to get you the help you need." I'm glad you've found the help you need, and pray for a time when you are symptom free.
Your sharing is read by many and perhaps some will come to realize that just because the symptoms aren't always obvious (having a cast, cane, bandage, cough), they aren't fake. They are real and change a person's life. You are strong and courageous, tenacious. Good for you!

Michelle said...

Leann, you story sounds so familiar to me, like it's my story. Thanks so much for sharing, many people hold on to their unknown and suffer in silence. To find that one doctor that will not give up is a rarity, but I have that one doctor also who would not give up on me because she knew my symptoms were real and my crazy blood tests results were real also.
I have battled a unknown autoimmune disorder for the better part of 12 years. My doctor had contacted other physicians pretty much all over the country and finally decided that I needed to go to the National Institutes of Health in Baltimore, Maryland. There I got the diagnosis I searched so long for, just knowing that my illness had a name was worth the travel. I was diagnosed with Adult Onset Still's Disease, a form of Systemic Idiopathic Juvenile Rheumatoid Arthritis that only occurs in Adults. It's a difficult disease but at least my doctor and I finally had an answer. Unfortunately there is not much known about AOSD, it's on the registry for Rare Disorders, but we are getting by treating symptoms and take the bad with the good. Thanks again for sharing your story. I love everyone of your books!!!

Kay said...

Thanks Leann for sharing your story with us. I'm so happy you finally got a diagnosis (not happy you're ill, but at least you know what you're dealing with) and are getting medication you need. Side effects suck. Seems there are so many of us that go through years of doctors, ever-changing diagnoses & horrible meds that make us worse rather than better. I'm still on that merry-go-round and about to discontinue some meds causing more problems than helping. In the midst of all that a malignant melanoma diagnosis last year, started the year with a surgery each month for the first three months of 2014. Thankfully that's all stable at the moment. I'm still undergoing frequent checks but with a history of bad sunburns and both my parents having had melanoma, it's more a matter of 'when' not 'if' we find more. Hang in there, I'll keep you in my prayers. HUGS!

ezreader said...

Leann, I have several physical issues also. One is pretty disabling. Right now I'm in a wheelchair. I'm glad you talked about your problem. It helps to share it, and helps those you share it with. So many of us have illnesses that no one sees. It's hard when people look at you and think you're just fine. I'm glad you were able to get a diagnosis and treatment. I get really depressed because I think about what my future may be. I'm thankful for the wonderful books you and other authors write. It takes me away to another place where I can lose myself in the characters world for awhile. Take care of yourself.
Kathy Meik

Rachelle21 said...

I just heard of a man getting tested for Lyme disease because his wife had it and it turned out he had a milder case. He was lucky to find a doctor who knew the symptoms. It sounds like you found a doctor who listened to your symptoms and made a good diagnosis. The illnesses you have been battling are not invisible to those who read this blog. Good luck with you treatments.

Leann Sweeney said...

Thanks so much, Zena. I sure hope this somehow helps others.

Leann Sweeney said...

Thanks so much, Michelle. I totally understand what you are dealing with. And I am SO GLAD you have a doc who was willing to go the extra mile. It means so much just to have someone believe you. Take care of yourself and a cure sure would be nice!

Leann Sweeney said...

Thanks Kay. I sure hope things remain stable long enough for you to catch your breath. You have been through so much! Hugs right back at you!

Leann Sweeney said...

Thanks Kathy. You have been through so much and yet here you are sharing your thoughts. I am very thankful for that. Hugs for you my friend-gentle ones!

Leann Sweeney said...

Thanks so much Rachelle. Lyme can be a sneaky illness. And myasthenia gravis was NEVER on my radar and yet all the symptoms I've dealt with for a long time fit that diagnosis. I just didn't present as a "dramatic" case. I feel lucky to have found one piece of the puzzle.

Mary E Tyler said...

Leeann, I am glad you are able to write your one book a year. That makes me want to weep. I have very progressed Fibromyalgia also and three chronically ill children, and a husband with PTSD from military service. Between all my disability, all the side effects from the meds, and all the care-giving, there is little left of me and nothing left remotely to even approach writing. I don't know that I will ever write again. That makes me weep.

At least you can still write. I am going to go cry now.

Mama Cat said...

Leann, I'm amazed that you are able to write with all of these health challenges! I have had fibro for almost 15 years - just months after hubby and I tied the knot. For almost 2 years now I have had RA, so I just love all the meds...Thankfully at least these things can be diagnosed now, and hope one day for a cure for all of the neurological and autoimmune diseases so we can return to functioning like ... well, as we would like to! It is little wonder how much you love your cats, as I do - they are God's gifts, especially to those of us who need them as much as they need us!

Fish Mom said...

I feel for you. I know this time around I have been sick for over 2 months and I am sick of it. I too am always tired no matter if I sleep 12 hours I'm tired. I am glad you found answers and hope you continue to feel better. Love the books by the way.

Mama Cat said...

God bless you, Mary! I feel so blessed at this point, even though I've been turned down twice for disability and am waiting for a hearing. I work as a caregiver still, 4 mornings a week, and that is about all I can do. My husband helps me through the really rough days, but he needs me to do what I can around the house, also. I pray that one day you will be able to write, and oh the stories you will write! Writing you could not have done without enduring these trials...blessings!

Leann Sweeney said...

Mary, I am so sorry. You are doing so much with so little energy. I found it was very important to grieve over losing the old me. I cried a lot myself. I just hope people read all the comments because folks like you are suffering. It's mostly women who suffer and very little research is being done. I hope you find relief and joy again. I believed at one point I would never laugh again. Take care of yourself and those you love. You are in my thoughts.

Leann Sweeney said...

It's been a lot of years for me, too. I hope you don't suffer too much from side effects from the meds. Sometimes they're worse than the illness. And what in the heck would we do without our fur friends? They are the BEST medicine!!

Leann Sweeney said...

Thanks Fish Mom. I hope you can get some answers. Waking up as tired as when you went to bed is not how it should be. I was like that before I finally decided to find out what the heck was wrong. It has been quite a long journey and I think there is more.

Mama Cat said...

Thanks, Leann. And that you for writing to Mary about grieving. RA kicked the stuffing out of me when in tandem with fibro. While it has been almost 2 years since my life had major changes - I still grieve for who I was, especially when I had 2 calls this winter to return to my old career in construction admin. It broke my heart to say no, or only part time at most, and admit why. I don't have many side effects due to taking folic acid to avoid them, but I am so tired all the time. Even occasionally fight dozing off when driving, so I drive only when really necessary. Yes my fur babies are a constant source of entertainment and love - life wouldn't be the same without them!

Sharon Braswell said...

I too want to thank you for writing your books Leann! I don't know how you do it , with all you have to deal with..but THANK YOU!! I hope you find a cure for all of your illness one day very soon!! My daughter has "Chronic Fatigue Immunity Syndrome" also and it's a shame it's name has kept changing in order for the illness and it's sufferer's to have respect..Ironic also that there is still no cure.. I (thanks to being rear ended in a car wreck while on the job) have Dystautonomia aka POTS which also doesn't have much in the way of a cure. My grandmother like you, was finally diagnosed with Myasthenia Gravis also. Perseverance is the only hope sometimes, and in your case I am so glad to hear it is paying off. Keep the faith and please keep writing as you are able!! <3

Melanie Backus said...

Leann, My hope for you is that one day there will be no more pain, fatigue and any physical difficulties whatsoever. Until one suffers physical pains of one kind or another, they just don't understand.. Good health is wonderful and I wish that for you. Thank you for sharing and thank you for your wonderful books.

Dana said...

Bless your heart Leann! I've known for several years that you were dealing with some of these issues but I'm so sorry to hear about the latest. I hope that the medications can keep the symptoms at bay and you can tolerate them and maintain your lifestyle. It's amazing how far we've come in medicine and then again still know nothing. You'll remain in my thoughts and prayers and keep writing when you can! All the best to you.

Leann Sweeney said...

Thanks so much Sharon. I have probably had the myasthenia for a very long time--and your grandmother, perhaps, did too. I just have a more subtle form. I hope your daughter finds the answers that have eluded me. I have never heard of POTS. So hard to deal with something people do not understand! But now I am off to educate myself! Stay as well as you can and I hope your family finds relief.

Leann Sweeney said...

Thanks so much, Melanie! I could deal with the pain but the fatigue is what really frustrates me. It's like a really mean trick that someone played on me. I was always so busy--always had some project going. Now, I have to concentrate my energy on my writing. And that's okay.:-)

Leann Sweeney said...

Thanks Dana. I think this latest diagnosis really explains a lot. I have probably had this for a very long time and no one had it on their radar. The double vision was really driving me nuts and now I don't have a problem except when I first wake up (when all the medicine is out of my system.) I feel very lucky to have finally found a puzzle piece.

Amanda said...

I'm so glad you haven't given up. Your an amazing writer Leann. The Cats in Trouble series, is a series I look forward to reading each year when there released. I hope you will be able to find a medicine or some type of treatment, that will help with all your medical problems. Take care.

Duffy Brown said...

Hang in there, Leann. My son has depression and other issues and it is amazing how they’ve come up with things to help him. I think his hope is that if his son has the same affliction the medical field will find even better ways to help him.

Leann Sweeney said...

Thanks Amanda! I will never give up hope that there will be answers in the future. For now, the myasthenia diagnosis is a step in the right direction!

Leann Sweeney said...

Thanks Duffy. I hope your son finds a treatment that lasts forever!

emilia.m said...

Never ever give up :)
and a book a year? some authors that do not have health issues are doing just that :) as long as the new is coming - it is great!!!
wishing you lots of health!!!!! :)

Dawn said...

Leeann God Bless you and I hope that someday this is all just a memory. Thanks for your books and for sharing your pretty little kitties with us all!

Leann Sweeney said...

Thanks so much Emilia! I don't think I have any give-up in me--and that's a good thing! :-)

Leann Sweeney said...

Thanks so much Dawn! They are pretty kitties for sure!

Kay Bennett said...

I am amazed at all you are able to do. I know for me i was just happy to have a name for everything that was wrong with me. It sounds like you have been on a very scary ride and you have definitely come out on the other side stronger. I am so glad you have a name for what is going on and are finally starting on the right medicine. I was finally diagnosed with ms and it has been a long road. I was just saying today that because of ms I became a cozy mystery fan. I had severe cognitive issues but was determined not to give up my passion for reading. A friend gave me a cozy and I was so drawn in I had to read it. It took a long time and a lot of rereading, but I got through. Now I read a book every night or two and couldnt be happier. It took a long time, but I came thru. Thank you from the bottom of my heart for sharing something so personal. Bless you always

Leann Sweeney said...

Thanks Kay. I know a little of what you are going through and when there is actually a name to put on what you are going through, it is a relief. MS is tougher than myasthenia, for sure, but they are both neurological. I have trouble to this day reading words on the page--but this medicine should definitely strengthen my eye muscles over time. I am so glad you found cozies and found this blog. Take care and thank you for sharing your own problems. There's a lot of us out there!