Sunday, May 15, 2016

Not My Normal Cliche..

by Patti Vanderbloemen

Yeah...it's been a while since I have blogged.  And, I am not going to revert to my old cliche of "been too busy"... "not much going on".  

I am not one who tends to voice her opinion via social media.  Political diatribe?  Not for me.  I rarely even "like" those types of posts on Face Book. I tend to keep my opinions about the political arena (it is a stage..right?) to myself.

My blog has almost exclusively focused on jewelry. I am always excited to share new designs.  But, there has not been too much coming from my studio lately.

So, today's post is very different for me. I thought I would share what has really been going on with me. I will probably never bring this subject up again. So, here goes.

Two years ago, during a routine physical with blood work, I was diagnosed as having Hypothyroidism accompanied with Hashimoto's Disease.  It's a good word - just means that my thyroid is confused and is literally trying to kill itself.  It is a very common disease and is treated with a pill.... forever. 

Last Summer, I began to have bouts of dizziness/vertigo, along with a terrible neck ache, a weird rash on my neck, and total exhaustion and fatigue.  So, I went to see my Primary Care Physician. Hypothyroidism can cause lethargy and dizziness. But, my doctor was concerned with the degree of fatigue and vertigo, along with my other symptoms. In the months that followed, I have seen more specialists and had more tests than I thought possible.


  • Extensive blood tests - including Lyme Disease, which were negative.
  • Ophthalmologist - I have been seeing an ophthalmologist on a regular basis and advised her of my vertigo - she found no issues with my eyes.
  • CT Scan - normal
  • Cardiologist - EKG, ECG, Echo Cardiogram, Heart Monitors, Stress Test.  Except for slightly elevated cholesterol - everything is hunky dory.  And yes - I am now on a low dose cholesterol medication and my levels are back to normal.  While I am grateful that everything going on with my heart is fine - it was a long, 2-month testing period that literally scared the life out of me as I did not any answers until the very end.
  • Physical Therapy - I went through two solid months of PT for my neck, twice weekly. While the PT helped during the actual treatment, the neck pain always returned.  The Physical Therapist - who I actually liked - thought that I could be suffering from Anxiety and suggested I contact a Therapist.  Although I did not believe I had anxiety, I was willing to try anything. Well, that proved futile--I attempted to contact three separate Counseling office.  Not one single return phone call or email. So much for Mental Health Care in 2016.
  • Orthopedic Surgeon - I had an X-ray of my neck, which showed normal deterioration of cartilage, etc...for my age. In fact, this was the worst appointment - lasted a total of 3 minutes! Once I said "I am not looking for surgery as an option", he basically shooed me out his door. Shame on him.
  • Dermatologist - The rash is simply the result of sun damage  -- probably from a bad sunburn I had when I was 8 years old. Typically, I avoid the sun like the plague - I remain pale and proud!
  • Ear, Nose & Throat Specialist - Vertigo is typically associated with an inner ear ailment.  So, I had multiple tests that all proved normal. I even had my hearing tested just for grins, which I am happy to report, is perfect.
  • Endocrinologist- He simply confirmed my Hypothyroidism and associated Hashimoto's Disease and that my Primary Care Physician is doing everything correctly (blood work check every 2-3 months).  My TSH level is is on a constant roller coaster ride of high and low - and my medications are adjusted accordingly. Once the TSH level achieves a normal rate, they have a mind of their own and tend to rise.  So, luckily I do not have an aversion to needles and blood tests, as this will continue forever.  And he reaffirmed that these with the thyroid are so very common and can cause some dizziness, and fatigue,  He reassured me that every patient has different experiences. And, that I am not nuts.
  • Neurologist - EEG of the brain, MRI - without and with contrast - everything is fine. However, she ordered a certain blood test to check for Anti Nuclear Antibodies (ANA). This is a blood test to check for a variety of auto immune diseases.  The results were returned with a flag - so I went to my Primary Care Physician, who ordered a subsequent comprehensive ANA blood test. The results of this blood work also came back with a flag for a horrible autoimmune disease called Scleroderma. I DO NOT recommend doing a google search of this disease, as it is awful. I was referred to a Rheumatologist.
  • Rheumatologist - My abnormal ANA test was probably due to my Hashimoto's Disease and Hypothyroidism - NOT Scleroderma. Basically, it is a disease that affects the skin (rash is an understatement here), and I had zero symptoms. He also stated that the abnormal ANA Level for Scleroderma was not all that high - but to have my Primary Care Physician perform the same blood test every 6 months to a year. 
I am sure I left something off of this list. But, 10 months later....I still have all the same symptoms from the beginning and there are days where I do not get off the couch or out of my bed. It is not every day - thank goodness.  

Through all of this mess, I have gained many valuable lessons.

  • I have to be the advocate for my own health. Doctors do not know everything. Some are good - and some should rethink their career choice. 'Nuff said.
  • If I am going to use the Internet for research on health issues - take every word with a grain of salt. The old adage "a little information is dangerous" applies. 
  • My symptoms and ailments are real - I am not a paranoid hypochondriac... no matter who insists they are imaginary.
  • I count my blessings every single day. It could be 100 times worse than it is, and I am truly grateful that it is not.
  • I have always had empathy for those who suffer with chronic illness - now, more than ever.
I did not write this post to gain sympathy - I wrote it mostly for me and for the very few people who have contacted me via email or Face book...wondering where I have been (a sincere thank you to those lovely people, too!) There was a point during these past 10 months where I questioned my mental health, as I was not getting any answers, the time between making an appointment with a specialist and actually seeing the doctor was ridiculously long, and quite frankly, I was depressed, But I am not depressed anymore. I have learned to deal with everything and rest when that it what my body is craving.

And on those days where I am symptom free - there is metal, hammers, fire, and beads waiting for me in my studio.  For that, I am forever grateful!



If you hung in until the end - thank you for listening. And, as always, thank you for stopping by today! Next time...I promise...the post will be back to jewelry!



XO

Patti


9 comments:

  1. I have been wondering why we've heard so little from you, so thanks for this update. Also, I think this can be helpful to people going through something similar. Not having a diagnosis when something is clearly wrong is awful. I'm glad that at least you've ruled everything else out, but I hope you start having more good days than bad.

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  2. I am so glad that everything is fine (not that having a chronic disease is fine but it's livable). Sounds like you have the best attitude. Just take it one day at a time and really enjoy the good days.

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  3. I have also been wondering where you have been.... Thought perhaps it was something like this, but of course , I did not know all the things you have gone through...It's hard to be ill, in Sweden we have a "proverb": "You have to be healthy to be sick" ... I can only say that I appreciate that you update us in this. I also hope that your good and healthy moments are much more numerous than the bad. As you know, I appreciate all your beautiful jewelry, those I have myself and to look at all the others you have made. I also think it's so nice when you take the time to share with us your tips and tricks, I really appreciate it! Good luck in everything you do and hold on to your patience. I look forward to your next blog post:) Hurray for the metal, hammer and beads! <3

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  4. Patti I am so sorry to hear that you've been going through this! all those tests, not knowing and all the while having these pains. I hope that your stretch of good days continues to grow wider and that you are able to spend your days creating all that beautiful jewelry. Be well my friend

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  5. Hi Patti, I am sorry to hear about your health issues. I am glad that you shared them with us. Please know that if you need to vent it is ok. I have admired you fabulous creations and I hope you are able to continue creating because you are so good at what you do. My wish is that you have many more good days than bad days.

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  6. Sorry to hear you've been ill, Patti--and sorrier still that you've found no answers to why. You have more stamina than I do if you're not anxious having gone through all of that! Here's to rest when you need it--and getting back to the hammering whenever you're rested enough. Take care.

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  7. I'm so glad you shared this. I feel like I really know a person when I learn about not just their triumphs but their troubles as well. Both make us who we are.

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  8. Hey, Patti - catching up here! I knew you had thyroid problems but didn't realize it's still ongoing. Ugh. I feel your pain, girl. My doctor tried for a year to regulate my tsh and other numbers with medication but had no luck. I finally did the radioactive iodine and now am on the hormone for life, BUT I do feel better. They can regulate that. Hope your solution comes quickly. (((HUGS)))

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