by Tamara Sperling
I have been diagnosed with Lupus, Sjogren’s Syndrome, Interstitial Cystitis, Celiac Disease, Osteoporosis, Fibromyalgia, Raynaud’s Phenomenon, Ulnar Nerve Neuropathy, and a Thyroid Nodule (that we are pretty certain isn’t Cancer).
I have had many other major illnesses and 2 heart surgeries along the way as well. But, like YOU ALL, I choose to forge ahead!
I was diagnosed with all of these over the past 2 years (while I was waiting for SSDI).
Although, I complained for at least 8 years and was told that it was all in my head. What VALIDATION that it’s NOT! I got to the point where I was sleeping in my car at lunch and going through two Dunkin Donuts Extra Large Turbo Hot coffees a day. (Because of the espresso shots, that’s the equivalent of about 6-8 cups per day.)
I went to bed as soon as I got home and had to sleep one weekend day away. I kept missing more and more work. I was far from the gym rat that I used to be. I had to admit that I needed help and while it was hard, I am SO glad that I did it!
I left my career as an Accounting Manager, which was the hardest thing that I ever had to do because I worked my way up from a Teller. (Yes, I was a former workaholic. It helped to drown out the things that I didn’t want to face.) When I realized that I was very sick, I took my part-time hobby and I created my business for Dog Training. Even if I was never going to be able to schedule a client, just the realization of that dream was what I needed.
During my childhood, my father was abusive to our dogs and killed one of them. I ended up really connecting with our other two because of this and taught myself how to train them when I was 10 years old so that they would be “good” for him.
Today, I pray to be able to have enough energy to work my doggie magic, if only one pup per month.
I have gone through rounds of all the meds. Because of chemical sensitivities, I have struggled with that. I also have thrown out all household cleaners and commercial toiletries and that has helped IMMENSELY!!!
I am facing HAVING to take Plaquenil because we need to put a lid on the damage that’s going on. We are trying it for the second time, but at a lower dose than what I couldn’t handle last time. Your prayers are appreciated as I go through this treatment. I am going to try to give it 6 months, unless the side effects are unbearable.
I was a military wife and traveled the world. I loved it, especially Okinawa, Japan. But NOT the company! Hence, the HEAVE-HO!!! Unfortunately, I was a very young and naive bride twice in my life, at 20 and 23.
Those were both TERRIBLY abusive relationships. Having gone through them, I have the ability to connect with other victims and help them to see that they DESERVE to be LOVED and RESPECTED!
For those of you out there that are dealing with the pain of rape and sexual abuse, I know what you are going through. It is a long road to healing, and I will share more of my story in the future. Just know that happiness and a feeling of safety CAN and WILL return.
Before my diagnosis, I had the privilege of being a “Step Mom” to 4 children. They were 10, 7, 5, and 3. They lived with us half the week. When I started to be less and less “productive” because of fatigue and infections, their father told me to leave.
I will always cherish the time that I had with them. Simple things like removing a splinter, or being led to a “Mother’s Day” breakfast with my eyes closed and a crown made out of paper sitting on my head. Beautiful.
I never had kids in my marriages because part of me realized that the fools weren’t good breeding material. Too bad my entire warning system wasn’t operating properly. But, I wouldn’t be the woman that I am today without what I have gone through.
When I was going through early diagnosis, with no income, my parents turned their backs on me. (Even though my father was diagnosed with Lupus a year and a half before me.) They kicked me out and told me to go to the local homeless shelter. Which I shouldn’t be surprised because of the HORROR MOVIE abuse that I suffered from both of their hands as a child.
They had a devoted 2″ wide wooden dowel that they used on me bare bottomed from the ages of 2-13, with a duct tape handle for grip (and so they wouldn’t get splinters), and the word “OUCH!!” written on it in black magic marker. Each of them taking turns, over a dozen full force blows, about 5 times per week.
This was punishment for making simple childish mistakes. Returning “home” after my relationships failed only brought me back into the dysfunction.
The pain that they chose to inflict on me (instead of dealing with their own pain) has given me compassion for those overcoming childhood trauma. I still pray for a reconciliation with them someday, but only with true remorse on their part.
So, I found myself sick and homeless, and the guy that I had dated on and off for about 8 months wouldn’t even answer my calls once he found out what happened.
Here comes God’s plan: I met someone at the Endocrinologist’s office the day that I thought that I might have Thyroid Cancer. He just so happened to have landlords who had taken people into their spare bedroom in the past. Before me, was a woman with severe diabetes.
Before that, was an immigrant in a wheelchair. They told me to call them Mom/Dad or Grandma/Grandpa.
They are my true, God given, family. My Sis and I get together twice a week. I could go on and on about them. They are such a blessing to me and showed me exactly how God wants us to love and care for each other.
After 6 months, my disabled housing was approved and it was a tearful goodbye. I miss the daily hugs and “Good Mornings/Good Nights/I Love Yous” the most.
My housing is wonderful though. Grab bars in the bathroom, no stairs, trash chute…a complete answer to prayer, with even a waterfall in the backyard, park-like area.
I learned what it was like to go from not even flinching in the Starbuck’s drive thru, to living on only $200 a month in Food Stamps and $25 in assistance for toiletries. I was given rides everywhere that I needed to go and never had to wait for the bus. That was a God send, especially in the Winter.
I had come to realize that the things that I thought were important, really weren’t. Even after having to file for bankruptcy, I made it through and now I have transportation again! I want to kiss the steering wheel every time I get in.
Six months after my move, I met the most wonderful, supportive man through an online dating site. His father has battled Celiac Disease since 1994, so I didn’t even have to explain that at all. He even looked up Lupus before we met in person. He always tells me how strong that I am and goes with the flow as far as my good days and bad days.
I can’t say enough good about him. He’s truly the most patient, caring man that I have ever known. We are engaged and look forward to joining our lives together in the future.
He decided to try my diet and lost 60 pounds in 6 months. I’ll share a Before & After pic at some point. What is this fantastic, fat shedding diet, you ask? We are on a Vegan, Gluten Free, Anti-Inflammatory diet. With no preservatives, no additives, no chemicals, and no sugar. (If you can’t pronounce it, or it isn’t in its natural state, we don’t eat it.) It has also helped me a lot.
I was MUCH worse off before I made these changes, which took 2 years of eliminating foods one by one, noting the improvements, adding them back in, and seeing what I reacted poorly to. My hunny’s sleep apnea has improved with the weight loss and he has no more stomach distress. I have less migraines, less nerve pain, and less stomach distress. I will share more on this at some point.
Before I properly dealt with all the trauma in my life, I did find myself using crutches for a 7 year span, from 23-30. I smoked a little over a pack a day. I have been smoke free since July 21, 2006. Woo Hoo!!!
When I was going through my divorce from the man who said, “I could kill you and the cops would never find your body because there is nothing that a 50 gallon drum and a bunch of chemicals couldn’t fix.”, I turned to “social drinking” on the weekends. I am glad to say that I kicked that habit too. And, I loved wine…and Vodka…and hard ciders.
Now, I have no taste for it anymore. BLAH! I did have a time where I randomly smoked marijuana, but I never really liked how it made me feel, so that was not really anything to pull away from in 2006 either. But, I know what it is like to WANT or NEED the escape from reality. My reality is so wonderful now that I don’t want anything to alter it. How awesome is that?
I thank you all so much for your support. I had to share a “Good Day” picture because I look pretty rough in my “Lupus, Lupus” rap picture. That’s Bonnie with me. I rescued her from the shelter back in December after losing my 12 year old Min Pin the Summer before. Bonnie is a wonderful dog and has learned a lot very quickly. She has had some abuse in her life, but we are working through it and now she sees that people and dogs aren’t as scary as they have been in the past.
To sum it up: Even though at one point, I felt like I lost it ALL when I became disabled, I have more peace and joy than I have ever had.
God has seen me through some very tough times and it has shown me that He will always find a way to provide for my needs. He will never let me down.
I was mad at God for many years because of all of my physical and emotional pain, but my Lupus journey has actually renewed my faith. Now, God and I go together like “Copy & Paste”.
I look forward to sharing my research on Natural Living and its positive effect on Autoimmune Disease and Chronic Illness.
I am also going to write about Healing Our Souls and Trusting in God. Your prayers are welcomed as I will need strength for this process.
I thank you for taking the time to read about my life. Feel free to share this with others so that they know that there is hope.
You can follow Tamara on her website: http://decidingtoheal.com