Cowgirl  Down

Dear Cowgirls,

I just read my last post from March 2. Wow! 4 Months ago. What a ride this has been.  Not too long after that last post, I had what I thought was a mental and physical break down.  I felt like I was broken in two. Now I know what it was. Lyme Disease. Borrelia.  Borreliosis.  The stealthy bastard.

Here’s my story, Part 1.  Brief as I can make it.

July 2016: I’ve had chronic pain issues for a long time, but it was somewhat manageable. I didn’t talk about it much. Most people my age and stage in life have pain.  But now it was becoming unbearable. I felt like my body was under siege. But this was getting to be debilitating. Migrating pain. Feet, legs, back, neck, shoulders, hands. But it would come and go. I finally “hollered whoa”  made an appointment with a doc in town. My regular doc was out on maternity leave so I saw her associate.

August 2016:  I told him my symptoms. That my body was under siege. Pain all over. I couldn’t say whether it was muscular, skeletal, or nerve. I asked about Lyme disease. Everyone who lives this cowgirl-life gets tick bites. I was embarrassed to tell him that I had googled my symptoms on WebMD and that’s what came up. He dismissed that and ordered blood work for things like lupus and MS etc. He asked me if I was depressed. Of course I was. Then he told me that depression causes pain and changed my prescription from Sertraline(Zoloft) to Cymbalta effective immediately.  He did not ask for a follow-up unless I didn’t feel better. He thought I was overweight (I was) and some weight loss would help. I got a call from the nurse a week later that my blood work was all normal. I started the Cymbalta. What a mind-F*ck that was. I wanted it to work. I thought the pain was improving and it did for a while. The side effects from the Cymbalta ( probably Lyme) were horrible. Dizzy, sleep, nightmares, foggy head, tired. I consulted the pharmacist a few times about it. After 3 months he said that was probably as good as it was going to get.

September – December 2016  My pain and anxiety kept getting worse and worse. Add dizziness and brain fog.  I was having dizzy spells, depression and balance issues. I felt like something was seriously wrong but I didn’t tell anyone. I attributed it to the Cymbalta and being overweight. (now I know it was the Lyme)  The pain was moving around. It was in my neck and shoulders, then in my knees and feet, then in my lower back or hands. I was having trouble getting on and off my horse which I need to do to take care of my cattle.  I was getting a weekly massage with no relief. I had good days and bad days. It was confusing.I just toughed it out. I was angry. Anger out of proportion to situations. I was trying to hold it in.

January-March 2017  I still felt like my body was under siege. I could not believe how far I had deteriorated in such a short time. I attributed it to age, weight, being out of shape and depression. I hired a trainer and started working out at the gym 3 times a week. (Oh yes I did!)  I could not believe how hard that was. I was getting more depressed and anxiety ridden. I was not loosing any weight. I knew my thinking was getting to be off.  Searching for words. Forgetting things.  I had debilitating fatigue, anxiety and pain. I thought it was because of the Cymbalta so I asked my pharmacist how to get off of it.  Which I did. I weaned myself off of it over 2 weeks.(I don’t recommend this)  It was horrible. Sweats, nightmares, very dizzy, balance issues. Cymbalta kicked my ass.  Lyme almost did me in. I thought many times how this was not going to be a sustainable way to live. If this was what getting old feels like, then deal me out.

April 7, 2017  After being off the Cymbalta for 2 weeks I had what I thought was a major depressive/anxiety episode. Now I know it was the Lyme.  I felt like it had broken me in two.  Unrelenting, debilitating pain.  Weakness.  Anxiety affecting my ability to function. Anger. I was crying a lot.  I could  not get on or off my horse. Struggling to get up the stairs. Debilitating fatigue. I got in to see another associate  in my Doctors office. I was again re-diagnosed depression. I was started me back on Sertraline (Zoloft). Don’t get me wrong, I was very depressed. I welcomed the return to my old friend, Sertraline.   I specifically asked about Lyme again because of WebMD.  I was told that was “Chasing Unicorns or Zebras”, a metaphor that made no sense to me. My annual pre-scheduled appointment with my regular doc who was back from maternity leave was in two weeks and then we would see how I was doing.

April 27, 2017   My depression was better after 2 weeks back on Sertraline. I told her about the past year. I cried. Debilitating pain, fatigue, dizziness, brain fog, crippling anxiety. I asked about Lyme Disease without reference to Web MD.  Explained my lifestyle. Ranch, livestock, etc. high risk.  She was “all-in” on the Lyme.  She ordered the same panel of blood work I had last August  plus the vector born diseases. She also thought the pain might be from back issues. I agreed to an X-ray and MRI even though I knew I didn’t have back problems.

May 8, 2017  I got a call from the nurse that Lyme test was positive!  Duh! I was actually so relieved. Started 28 days of Doxycyclene. Maybe I wasn’t just old, crazy and lazy after all.  I  finally allowed myself to rest.

May 17, 2017  I had a follow-up appointment for Lyme and depression.  I was feeling better. She tried to educate me on Lyme but, believe me, I already knew more about it than the simplistic CDC handout she gave me. She said if she had a diagnostic code for “Bad Ass” she would use it. (Thank you? I think?)  She said I had some back issues but I would not address them. My back was not, nor has it ever been the problem. I still I didn’t know what their long-term plan for Lyme is. She said it depends on how I feel. After the 28 days of doxy they would just treat the symptoms.

 

My thoughts now:  Today is July 14, 2017.  A year after first seeking help. I’m still trying to gain some perspective. I took the 28 day course of Doxycylene ending June 5th. I feel much better, but not normal. I don’t know what the Borrelia (Lyme)  has done to my body, but I don’t feel the same. The pain is mostly gone. The fatigue is better, but it is still too much.  The brain fog is gone until I get too tired. I’m not sure about the memory issue.  The dizziness is gone, and my strength is returning. I’m able to saddle and ride my horse easily. Lyme has effected me emotionally as well as physically.

Over the winter and spring, before I knew it was Lyme, when I was in so much physical and emotional pain, my world became pretty small.  I did what I had to do around the ranch to take care of the cattle and that was all I had energy for.  People were distancing themselves. I was getting lectures from family members about my weight, behavior and anger issues.  I didn’t want to see or talk to anyone.  I did not discuss the extent of my pain and anxiety with anyone. Not one soul.  I was trying to tough it out.  I feel traumatized by the whole experience. Hardly anyone noticed how much I was struggling. It wasn’t sustainable. I felt like I couldn’t go on.

I was ignored by the first two doctors I saw. Looking back, with what I  now know about Lyme, I realize that I was symptomatic since before the summer of 2016.  I am angry that the docs didn’t really listen to me. They made me think it was all “in my head”.  I think I was dismissed because of my age, gender and stage of life.  I’m angry at myself for not being a better advocate for myself. I still have a little resentment of some friends and family even though since the Lyme diagnosis they have been more supportive. A counselor told me that telling my story and talking about it will help the healing process.  I have made a conscious choice to educate myself about my health in general and Lyme in particular and to  be a better advocate for myself and others.

 

This is the end of Part 1.  Stay tuned. Don’t worry, there is a happy ending.

 

Love Cowgirl-Red   aka  Terah.

 

P.S.  My purpose in telling this story is to heal myself mentally and physically and to encourage and support others who are on the Lyme journey. Please comment or email me.

** P.S.S.  Cowgirl Down is a take on what the rodeo announcers say when a cowboy gets bucked off a bull or bronc in the arena and get’s knocked out or doesn’t get up. “Cowboy-Down”.

 

 

 

 

 

 

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Comments

  1. You are one tough lady! Prayers that you will start to feel like your old self !

  2. I’m so very happy you persisted. I’ve seen the dismissal of many people, especially women, when seeking help for symptoms like these. I’ve been dismissed and gone through much of the same thing as you, my friend. Including detoxing from antidepressants. Brain zaps are not fun. I agree with you 1000% that sharing your story will help you heal and help others do the same. I’m wearing my virtual spurs for you, Cowgirl Red. I’m looking forward to reading part two. I’d love to interview you for a series I’m doing on my website to help others. I’ll send you an email, Terah. And, of course, I’m sending you continued healing and strength as you get back on the saddle of life again.

    • Thanks Lille Diane! Yes, the brain zaps. Oh my gosh! Detoxing from Cymbalta was horrible. What an awful drug. Looking forward to your email. I found one of my ‘gratitude rocks’ the other day. Made me smile and think of you!! xoxoxo Terah

  3. Oh, Terah! I am so sorry you have had to go thru this alone! I’m sorry I wasn’t there for you as a friend ……. some friend I am!!! I’m glad you are feeling better! I’m glad you were finally able to make someone listen to you! Hugs to you & I hope to see you again some day!

  4. I had a similar experience with doctors misdiagnosis of asthma. Three months of every other week seeing my gp. I couldn’t breathe. I’d have coughing fits so bad I had incontinence. I was in my early 40’s and had gained 60 lbs in four months due to the fact that I couldn’t do anything. I’d climb into a car, drive to work, come home, go to bed.

    Finally went to a different Doc after two minutes she diagnosed me, got me on asthma mess, within 20 minutes I could breathe better than I had in months.

    During this time I also had brain fog and memory issues. I thought I was going into dementia- what it turned out to be was vitamin deficiency I was so low on B-12 and D3. After starting on those vitamins, within a week I was functioning normally.

    I was terrified I was dying during the months I went through my ordeal. I felt like the original doctors didn’t treat me well because of my age, sex, and weight. The doctor who finally diagnosed me was a female who is older than me with a few extra pounds.

    I wish you well on your journey.

    • Thanks Nicole. What a horrible ordeal you went through. I’m glad you are doing well. I too had a D3 deficiency once. I had probably had it quite some time. Getting on the vitamin cleared up a lot of things for me. Bless you and I wish you well. Stay in touch. Terah

  5. Oh, sweetie! My heart goes out to you. I’ve had osteoarthritis (almost everywhere–even jaw) and fibromyalgia plus a variety of other issues for about 16+ years. Even when I got diagnosed with the fibro there were people who didn’t believe it was real. I have been housebound for almost 14 years. I am so glad you at least were finally diagnosed and treated. I am off to read part two. 🙂

  6. I had my first full day of feeling better! No nap today! Hoping I don’t have a melt down tomorrow!

  7. Thank you for being so real, Terah. Your story may help so many others, not just with Lyme but those who need to be an advocate for themselves. You have given them permission plus a practical reason – their very lives. Love you and am proud of you, Cousin.

  8. Kelly Brewer says:

    Terah – what happened to you is all too common w/Lyme and other tick borne infections. It occurs without regard to gender, age, race etc…We started down the same path w/my 19 yr old daughter 5 years ago. First Dr refused to test for Lyme and put on an anti-depressant. It took us 15 months to find a Dr that would test and treat appropriately. It took another 3+ years to find out that she had a 2nd tick borne infection when we sought a 2nd opinion b/c she never fully recovered. Because you want undiagnosed for a while it will likely take longer for you to recover, so stay on the antibiotics until you do and do all the supportive measures to regain your health. Consider 2nd opinions especially w/a Lyme literate Dr and also additional testing for other tick borne infections like Bartonella, Babesia, etc. Best lab for testing is IGenex in Palo Alto, CA(for Bartonella its Galaxy in NC). Don’t accept less than the full recovery of your health as being normal. You are one Bad-ass cowgirl and my daughter is one bad-ass Yankee!!

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