Posted on Apr 21, 2013 in Blog |
April 21st – I have accepted The Health Activist Writer’s Month Challenge to write daily about my disease. #HAWMC @wegohealth
I just re-read my very first blog posting in 2009 about my journey to get to the Lyme Disease Diagnosis. I thought it was worth reposting . . . .
The Initial Few Weeks
Note from Sharon: By verge of reading this page, you know that I have been diagnosed with Late Stage Chronic Lyme Disease and not Lupus. But the initial Lupus diagnosis is part of my story, so if you want to know the story from the beginning, we have to start with Lupus this past July. . . . .
July 17, 2009
Two days ago I was diagnosed with Lupus. Auto-immune is about all I knew about then. I left the endocrinologist’s office with strict instructions to see a rheumatologist as soon as possible.
When I walked out of the office, the sun was beaming down, humidity was low, so the warmth wasn’t suffocating. I called my sister, the nurse, and told her.
“I am so sorry, Sharon,” she offered to me.
“What’s your ANA ratio?” followed quickly afterward. Yep, she’s a nurse. She needs facts, details.
“1:340 with a speckled pattern. It means I’m in an active phase of Lupus,” I answered. I didn’t even know what I was saying; rather just regurgitating what I was told. I gave Gayle the other data I had and I answered a lot of her questions with “I don’t know.” It was a starting point.
I called the rest of my immediate family and gave them the information. It’s still not sinking in.
I find myself smiling. This means I don’t need back surgery!! I think this may be the best news I have had in weeks. It’s strange to think that Lupus is a better reply. But I will take it for now.
So God, what’s my lesson with Lupus?
July 18th, 2009
I went to a meeting this morning and shared my diagnosis with the group. When I say, “I just found out a few days ago that I have Lupus,” it feels as though the dis-ease is out there, separate from me. I keep thinking it hasn’t sunk in yet.
Many of my friends have responded with, “I am so sorry.” And I just emotionally disconnect from them. I don’t want to be in that sorry category. I want to Live with Lupus, not Suffer from it. By God’s grace, this resolution is easy, quick and simple for me.
I am resolute in not entering chat rooms, looking for worst case scenarios, reading horror stories . . . . I am not going to let this disease rule me anymore. It has tortured my body for at least five years. It took me 18 months to get a diagnosis.
Actually, I am relieved. I finally have a diagnosis and it doesn’t include surgery! Now that I know what I am dealing with, I can move forward from here. The past 18 months have been more like twirling in circles, getting dizzy and falling down; then getting up again and twirling again. I suppose it eventually led me to where I am, but it sure felt like I was getting nowhere.
Honestly, it’s a relief to know what it is and that within the next few months, my pain will recede and life will become manageable. I know I have some big decisions to make about my life as stress is a big no-no with Lupus. But I don’t have to make those decisions today. Today, I get to write and see what emerges from the paper. It’s discovery time!
I am trying to write down the symptoms that I have had, their date of onset, dates of flare-ups that I can remember. I am trying to figure out which strains of Lupus I might qualify for. I’m also recording which doctors I saw when and what medications they gave me. I want to be as prepared for my appointment as possible.
A friend, Sue, gave me flowers today. Three big sunflowers and other wistful, delicate flowers (sorry, don’t know their names) include a “cat’s tail!” Jennifer gave me delicious chocolate cupcakes. Fresh flowers and chocolate are my dream combination on a day that could contain self-pity.
It is amazing what simple gestures do for my soul.
Tomorrow, I am meeting with Jennifer the trainer to see what exercises I can do without causing more damage or pain to my life. If she can get me started on something, then I think my fear level will lower and I can start feeling better with some exercise.
Monday, I am meeting with Carolyn to talk about what she has gone through and where she is. I am so grateful for others’ willingness to talk about their disease and how they live with it
Stretching – for the first time in my life, I am unable to touch my toes in a straight leg reach. First time in my life . . . . hmmm . . . . I realized the quickness of this disease’s progression has taken in the past 18 months. Last March, I could touch my toes. I am going to do this stretch every day until those toes are touched again.
July 20th, 2009
When I woke up this morning, I was excited to try the new stretching exercises that Jennifer had shown me yesterday. I was excited until I realized I could not even lift my back off the bed for a “bridge.” Lying there, my brain telling my muscles to tighten and lift, and seeing nothing happened . . . it started sinking in what “this” is.
I don’t want to call it a battle because then I only picture myself fighting. And I don’t want to fight. I want to succeed. Not win, not conquer . . . why is the word choice so important to me?
This dis-ease is not something I will take a pill for and have the symptoms dissipate in a few days or weeks. This is a long term assignment that has multiple steps and stages. So I need to, as author Anne LaMotte says, “take this bird by bird.”
When I get out of bed these days (and for the past few months), I am leaning over at about a 90 degree angle. I place my hands just above my kneecaps and slowly walk them up my thighs to my hips. The last little part of standing straight comes anchored with a deep breath and followed with an audible grunt of pain and misery. It is, simply, excruciating.
This morning, with that grunt came the thought, “I can’t keep doing this. Is this what my life is going to be?”
“Danger, danger Will Robinson.”
This thought process takes me only into bad neighborhoods filled with negative energy and fear. I don’t have the energy, time, or fortitude to go there. I have been there plenty of times before and it has never been a place of growth, inspiration, or insight. I have to find a new way to think about this.
I have turned that statement of misery and self-pity into a list of goals that I want to achieve. Instead of focusing on what I can’t do right now, I have to make a list of things I want to do again.
1. Lift my pelvis and back off the bed.
2. Get out of bed without excruciating pain.
3. While sitting in my make up chair, lean over and pick up my hair dryer off the floor.
4. Sit on the toilet without touching the grab bar or countertop.
5. Lift five pounds in my left arm as high as my right arm can.
6. Wash the dishes without leaning on the counter.
7. Sit up straight while driving
8. Get into the car withOUT using my hand to lift my leg and place it on the floorboard.
That’s my list so far. I am sure I will add to it, but I don’t want to make the list too long for now either.
The past few days, I have heard, “Listen to your body; listen to what it is telling you.” I don’t know if I am becoming a better listener or a hypochondriac. I think it is a combination of better listening and giving my body permission to feel sick. I tend to ignore things sometimes, in an effort to push through and get the work done that lies in front of me. If it’s not on the schedule, it doesn’t get done and that often includes being sick — until my body collapses.
But I am becoming more aware of the pains, the tightness, the blurred vision, the headaches, the exhaustion. God is teaching me listening skills, acceptance.
I thank God everyday I can work on the computer from a prone position!
I got an earlier appointment with a rheumatologist for July 27, 2009. I am excited about this. I just want to get moving forward.
The Washington Post came out with an article about a drug trial for Lupus that is looking very promising. I know someone in that trial and she has felt great for five years. Currently, there is no drug made for Lupus. Doctors have instead found drugs used for other illnesses that happen to work for Lupus patients. There have been no new drugs developed in 50 years . . . .
Jennifer and Carolyn have warned me that I need to develop a deeper level of patience when dealing with this dis-ease.
So what is God teaching me? Patience?
July 27, 2009
Well, maybe I’m not Living with Lupus. Right now, I don’t know what I am living with. If I listen to today’s rheumatologist, I just have a bit of bursitis in my hip and he can’t explain any of my other symptoms. He never smiled; he never asked me if I had questions. He gave his explanation for a possible “false positive” on the blood work, but that’s about all he gave.
Oh yes, well, he did give me my first absolutely painless cortisone injection.
“Why did you let him give you a cortisone shot?” Jeff asked me.
“Because at this point, if a cortisone shot will relieve some of my pain, I’ll take it,” I replied.
The doc ordered bloodwork and told me to come back in, oh, about six weeks.
Yes, I have another appointment with a different rheumatologist on Wednesday.
It’s not that I want to have Lupus. I just want a viable diagnosis that explains all of my symptoms; heck, most of my symptoms. It’s very hard for me to accept that it was a false positive with no explanation of all the other symptoms. But, I can wait for bloodwork results. And I suppose I will have to wait a bit longer for some pain relief.
I find it extremely difficult to believe that a “little bit of bursitis” in my hip is the cause of this sometimes excruciating pain.
I have gratefully collected so many people’s names and numbers to call who are each Living with Lupus successfully. Thank you for tremendous support, suggestions, insights, and prayers. At this time, I am choosing not to call anyone else until I know a bit more. I stopped researching the web after running into too many scary things that I didn’t want to see any more of. And I stopped talking with people after I heard from two people that their symptoms weren’t alleviated for six months after initial treatment.
I refuse to allow this disease, whatever the heck it is, to suck me dry of my physical, emotional, or spiritual energy. I will not allow it to make me sicker. So, yes, maybe some will call it denial; this week, I will just label it compulsive knitting. Stephen is happy; he got a new afghan out of this!
What I have learned, again, is the generosity of our Neighbors, family and friends. I have people who don’t even know me call and offer their support, their lessons learned, anything that might help me. It is very humbling to receive such compassion and kindness of this magnitude. It is also very comforting.
I am trying NOT to ride the rollercoaster. Rather, I want to work each day, knit each day, write each day, and play each day. I will continue to live each day with gratitude for God’s gifts to me. That includes each and every one of you.
August 1st, 2009
I met with another rheumatologist and am quite impressed with her. She listened to me for almost an hour, asked questions, examined me. She took blood and I meet back with her on August 10th to discuss my symptoms further.
I feel much better with her than with the first one this past Monday. It’s so much about chemistry for me. . . . .
I have so many incredible people giving me permission to do less, encouraging me to take naps, praying for me, offering their support, love and guidance. This is very humbling for me. I know I said that earlier, but it remains so for me. I am trying to remember this and open myself to the love that is being sent to me on a daily basis.
I am also meeting with an osteopath next week to see how he will incorporate into my wellness plan. And, next week, I am getting some reflexology work done (if you have never done this, you HAVE to try it, at least just once in your life . . . ).
And next week, I am meeting with a Doctor of Oriental Medicine. I need developing my Wellness Plan and I think these physicians will be of great help to me.
Morning is still my most painful time of day – thank God for stretching exercises and patience. I no longer hop out of bed. Instead, I try to start it more gently and more leisurely, adding in some meditation as I help my body awaken and prepare for the day.
This week was a bit crazy for me and I spent two of those days feeling boldly aggravated. I had trouble accepting life on life’s terms for those two days.
Today is better. My house is clean and quiet – my head is not crowded with anxiety or panic. I think I may write some more later today for my book.
And, it’s my husband’s birthday on Monday. We are having a family birthday dinner tonight, a small BBQ tomorrow, and then his actual birthday on Monday. Jeff generously asked people to donate to the Lupus Foundation of America in honor of his birthday . . . . I love being married to my best friend.
I am a lucky woman.
August 10, 2009
I know everything happens for a reason. I also know that I may never find out the reason.
I received some of my bloodwork results today revealing “inconclusive” information. The rheumatologist (the one who listened) said there wasn’t enough to go on to create a treatment plan. She suggested I go see the neurologist and neurosurgeon, let them run more tests, and then if nothing is discovered, come back to her.
I emailed my family the results, telling them what she said. The first response I got was from my uncle. My aunt died a few years ago at the age of 57 as a result of Lyme disease that was diagnosed too late. For my uncle, my process of diagnosis discovery cannot happen quickly enough. He responded with incredibly detailed data showing I need to get more specific tests; another physician consulted. He told me the whys and how tos. I am so grateful to have several people like my Uncle Troup on my “team.”
I am still a bit in limbo land. I have had some fairly rare medical things happen to me in my lifetime. In fact, when I am diagnosed with things, the doctor will usually refer to it is “fascinating,” “very rare” or “most interesting.” S/He will often have consulted with other physicians about my case of whatever.
I have held great respect for the medical practitioners throughout my lifetime. They have saved our son’s life, saved my husband’s leg, and many more.
My “plan” during this phase of my dis-ease has been to continue working with medical professionals and then to add in some holistic elements to my recovery as well. That remains my plan. But my perspective has changed a bit.
For two weeks, Freddi loaned me her Nikken magnet systems.
Some of you are ready to stop reading here and some of you are steadfastly encouraging me along . . . this is not a Sales Testimonial. I have never believed in the power of magnets to heal anyone. But Freddi is a close friend who has known me for years and is well acquainted with my physical, emotional, and spiritual life. She begged me to try; just to see if I noticed anything.
Reluctantly, I agreed. She was loaning everything to me for two weeks; I didn’t have to pay for anything. Ok, it’s two weeks later, and I am purchasing the system. I don’t think that the magnets necessarily heal me; but they do seem to help with my balance (not falling so much) and pain management. And I am fairly certain that it’s not just a placebo effect. Though my dad chuckled and laughed, asking, “Who cares if it’s a placebo? If it works for you, go for it!”
Also, in the past few days, I had an osteopath and doctor of oriental medicine both take my medical history. Independent and unaware of each other, they both suggested that I might have an enzyme issue. They want to pursue things relating to my small and large intestines. The osteopath also expressed concern with my lungs (my asthma has worsened in the past five months, but I had not told him of it) and pancreas (I had pancreas problems in the past).
And then, today, I received Reiki and Reflexology. Afterwards, she told me what she perceived (again, without knowing what anyone else has said or suggested): your small intestines are really putting up a fight; are you having difficulty with your lungs?; spine is still unbalanced . . .
So the spooky music comes on in my head, and I think to myself, “This is INSANE.”
Honestly, I don’t know what it is, but I don’t believe in coincidences and I do believe that we are beings holding and emitting fields of energy. If this helps, then I will continue it. I have never planned to develop a treatment plan exclusive of one type of healing process or the other. I do believe they are interconnected and entwined. I just didn’t realize the depths at which it might be.
I had five days last week, feeling almost entirely pain free; my first time since April. That in itself, was miraculous to me.
I also believe in the power of prayer and know that many of you have me on your prayer list. Thank you. I have been blessed to witness and receive true miracles throughout my 46 years for members of my family and for me. I believe those miracles can and will continue. But the spooky music is still playing in my head.
September 19, 2009
It’s Not Lupus; It’s . . . . .Bartonella, a co-infection of Lyme Disease. I will spend about two years in treatment primarily with various types and levels of antibiotics and I am not sure what else. I do know that this physician will treat me in the most appropriate manner for what I have.
Finding the RIGHT doctor
I have spent the past two years trying to find out what is wrong with me, going to internists, gastroenterologists, endocrinologists, chiropractors, orthopedists, neurologists, neurosurgeons, dermatologists, urologists, osteopaths, and then three rheumatologists. There are probably more specialists, but I can’t recall them right now.
In the midst of my two-hour appointment with Dr. M this past week, he also found other health issues that need to be addressed that no one else has acknowledged or treated effectively.
Dr. M was also able to trace this infection back about five or six years at a minimum. I had an endoscopy done with a biopsy that tested positive for another type of co-infection of Lyme disease. If only this gastro guy had been educated enough to know this.
He changed a couple of my current medications, suggesting that within the next two weeks, I may experience a 20% reduction in my symptoms.
This isn’t just a message about my journey. This is my sharing of my own experience so that maybe I can help someone else out there who is in pain, suffering on a daily basis with a misdiagnosis.
Trust my gut
In May, an orthopedist told me that I needed back surgery within the next six weeks by a neurosurgeon. I went to Neurosurgeon #1 – he never examined me or looked at the MRI. He read the report and said, “Let’s wait six months and see what happens.” A voice inside of me said, “Get a second opinion.” I got a second opinion. Neurosurgeon #2 gave me a thorough exam and talked with me at length. He wasn’t sure I needed the surgery, but was very concerned about my peripheral neuropathy. The back surgery would not be simple, not be minimally invasive. I would spend the entire summer recuperating.
My gut was saying, “Keep going, keep trying.”
I went to my endocrinologist for a regular med check for my thyroid. I said, “Let’s play a game of Mystery Diagnosis.” After hearing about the most recent few months of symptoms, he is the one who suggested I get tested for Lupus. The result was positive.
I emailed my family about the results. This is where it gets really personal.
My Uncle Troup emailed me back immediately and told me to also get tested for Lyme disease. His wife, my Aunt Betty, died in 2002, at the age of 57, from complications from Lyme disease that had been diagnosed too late. I promised him I would.
Rheumatologist #1 tested me for Lupus again and also Lyme, by my request. My Lupus test returned Borderline; general Lyme results showed two DNA bands positive for Lyme. But this physician said I didn’t have Lyme, didn’t have Lupus and she couldn’t help me.
I sent my results to Uncle Troup who again immediately wrote me back and said, “Find another physician. You have Lyme. You need to be on antibiotics.” His comments were followed with case studies and research with other Lyme patients.
Rheumatologist #2 told me I had bursitis in my hip and gave me a cortisone shot. Including the time for the shot, I was in and out of his office in 11 minutes.
I tried an osteopath. He took blood, sent it to Igenex lab in California with a more thorough Lyme test. It came back with four DNA bands positive for Lyme. After waiting a week for him to call me (I had the results faxed to me upon their arrival), he spent seven minutes on a Friday afternoon telling me that my test was negative for Lyme. I asked him what we do from here. He replied, “We just treat you symptomatically and hope the peripheral neuropathy doesn’t get worse. I guess if it does get worse, we’ll have to run more tests.” I brought him back to the Lyme, “Is it possible to have a co-infection of Lyme?”
“Well, yes, it’s possible. But it’s so rare, I just don’t test for them.” That’s what Aunt Betty’s internist said about Lyme.
Of course these things are going to be rare if they never test for them!!! And these are physicians!!!
By now, my family is tangibly apprehensive, fearful, and frustrated. Please don’t make this a repeat of Aunt Betty.
Every time I had more tests run, I sent them to Troup and he responded with objective evidence. This was not an emotional plea; he had numbers and case studies to back up why he was urging me to continue in my search for a competent physician.
I was also talking to other Neighbors who have Lyme. I showed them my results. They agreed; I needed to find someone who would diagnose and treat me for Lyme.
I found Dr. M in a roundabout way from three different sources. I know now that I don’t need to look any further.
I thought I would feel elated or bittersweet or be in tears. I am not any of these today. Today, I feel calm, relieved, safe. I know I am not crazy; there is a genuine medical cause for all these bizarre, fluctuating symptoms. And, I know I can be treated and hopefully cured. I wasn’t sure I would ever be able to say that.
So, now I begin the journey of researching Bartonella and Lyme disease. Evidently, I may still need to go gluten and dairy free, so I’m definitely open to suggestions, insights, and anything else anyone wants to offer (as long as it’s positive; I still don’t want to hear any nightmare stories).
My suggestions for anyone in pain, suffering on a daily basis with bizarre, changing symptoms:
1. Don’t give up
2. Trust your gut
3. Ask for help and ask for support
4. Accept that help and accept the support.
5. Talk to others. Suggestions, connections, and insights will come from the strangest of places that you may never expect.
6. Advocate for yourself; don’t let anyone push you around, put you down, or ignore your symptoms.
7. Get a 2nd, 3rd and 4th opinion if you believe that’s what you need to do.
8. Keep a copy of each and every test result and medical records.
9. Don’t give up.
10. Don’t give up.
11. Don’t give up.