I've been told lately that I'm not the person I used to be. I'm not sure if it was said to hurt my feelings, though I suppose it was as the tone was rather hateful, but it got me to thinking. You're damn right I'm not who I used to be. And how could anyone expect me to be? Life means changes. And these changes bring about changes in people - sometimes good, sometimes bad. I guess it depends on your perspective. If I'm not as trusting as I was before, I have reason. If I'm more self involved right now than I've been in the past, I believe I deserve to be based on current circumstances. As long as I'm not hurting anyone, I think it's okay if I don't remain a static personality. Change brings growth. And I've had plenty of reason to grow and change. And I believe if you care about me, you can learn to accept me as I change. Unless your motives are selfish. Then I can't help you. And, quite honestly, I don't want to.
In my lifetime, I’ve encountered a seemingly ridiculous number of hardships. These hardships have shaped me into the person I am today. That person is very different from the one you might remember if you haven’t seen or spoken to me since, say, high school, college, or even early adulthood. Even just the challenges of the past three years or so have changed me yet again.
I think it’s normal to experience change through chronic illness and pain. In order to deal with these things, you have to alter your actions, reactions, and perceptions. Beliefs alter as do relationships. It’s inevitable that dealing with a seemingly endless streak of “bad luck” would change my personality. But what you need to understand is that I’ve survived. And I continue to survive. In the past 25 years I’ve survived:
· A horrific marriage that included physical, as well as mental and verbal abuse by a drug addict & alcoholic who stole my innocence, my life’s savings, my belief in the justice system, and my health during a difficult pregnancy.
· An even more stressful divorce where justice was not served and the best interests of my infant daughter were traded for the “right price” by a woman who used her wealth to buy her son’s way through a corrupt court system.
· Twelve years of unmentionable horror where I had to abide by the law while my ex did not. Twelve years of trying to get my daughter extricated from a complex web of deceit, lies, lawlessness, drunkenness, lewdness, abuse, neglect, etc. etc. etc. Imagine having to let your 6 month old baby go away for three days and two nights never knowing if you’d see her again and if you did, what shape she’d be in. This continued for twelve long, agonizing years during which she nearly died at his hand multiple times. The judge’s response, “Well, she didn’t die, did she?”.
She was subjected to so many horrific things that I refuse to revisit here. Suffice it to say, no child should ever have had ANY contact with that man, his mother, his sisters, his cousins, his “friends”, etc. There are many people I believe should be living out the rest of their lives in jail for what they did and others who should pay (and I do believe will ultimately pay) for sitting idly by while witnessing these things & doing nothing. The atrocities that were allowed to happen to a small, innocent child while my hands were tied by a flawed and inhumane “justice system” took their toll, not only on my beautiful daughter, but on me as well. Which, I believe, was his point all along. My daughter suffered in order to cause me pain.
· By the time a new judge had taken seat and my ex had nearly (once again) killed my daughter, I was able to FINALLY extricate her from Hell. And, at that time, I began to have the leisure to finally notice some of the odd physical problems that had been plaguing me for years. Fevers of over 105, repeated cases of pneumonia and pleurisy, “infections of nearly all the organs in your body”, hair falling out, etc. I thought these were symptoms of the constant stress of my situation. I also didn’t have health insurance, though I’d kept it for my daughter at all times, with no child support being paid, I couldn’t afford to insure myself, so I’d let a lot of “weird” symptoms slide. Once the constant stress of every other weekend and holidays passed, I figured I’d feel better. In fact, I began to get much worse.
In hindsight, it’s clear that those years of stress helped contribute to my health’s deterioration. It took, in total, ten years to get my diagnosis of Lupus. They thought I had pernicious anemia due to my blood work & symptoms. Weekly B12 shots didn’t really help. They then were sure I had Leukemia due to my white blood cell counts, easy bruising, constant fevers, etc. I endured a bone marrow biopsy (in the hip bone – very painful), but was negative for leukemia.
· That was when they finally discovered the Lupus. By the time they did, my kidneys had been damaged to such a great degree I had to undergo some of the most noxious chemotherapy in order to save my life. Six months out of every year for 5 years I underwent Cytoxan therapy. It saved my kidneys. And gave me bladder cancer.
· After 5 years of chemotherapy 6 months out of every year, the worst side effect comes true. The doctors discover bladder cancer that has formed due to the toxicity from the Cytoxan. I undergo surgeries to remove the tumors & start on a different protocol of chemo – this time to treat the cancer. At least this chemo is covered by insurance. The loophole of using chemo for a non specified disease had resulted in my insurance company not paying for any of the Cytoxan treatments and associated costs for the past 5 years. Each infusion cost roughly $17,000. This disease had stripped me of my health, and systematically stripped me financially and ruined any credit I had.
· A year later, the cancer returned – tumor markers show that it has left the site of origin. Small tumors are found in my lungs. I undergo radiation & chemo for the metastasis. The cancer is now considered “chronic” and I am told they cannot “cure” it, only treat it. The cancer is considered to be “arrested” after 30 rounds of radiation & 6 courses of chemo.
I continued to work full time. I had not missed more than 4 days of work at a time due to chemo side effects and had gone more than six months during treatments missing no work at all. However, this is not seen as a great feat, rather I’m always on edge that I will lose my job. I get low reviews based on my illness, not my abilities. I’m encouraged to miss fewer days of work. The added stress is not good for my health, but I need the insurance that comes with the job.
· The following year, a CT Scan shows lesions in my brain. After further study, it is determined that these are not cancerous, but are leftover scar tissue from Lupus CNS involvement. But, then in December, the cancer shows up in my bones. Tumors are shown in my ribcage. More radiation. Through the course of six years, I undergo every treatment protocol they can imagine to rid my body of cancer. In December of 2009, they finally tell me to contact hospice as they can no longer help me. I turn to alternative treatments that I had studied throughout the years & in six months I am cancer free!
During the past three years, I’ve deteriorated in so many ways, the doctors are perplexed. But a recent visit to the physical therapist shed some light on the situation. He said, “The doctors don’t know what happens to someone in your situation because most people who went through what you have, died. You lived. And there’s not much we know about what comes next when that happens.. You have to expect that 10 plus years of basically poisoning your body to do some damage. Only time will tell what kind and how much.”
· August 6, 2011 – I went blind. You can read more about this horrifying experience in tomorrow’s post. Suffice it to say, it was one of the most terrifying things I have ever gone through. I was completely blind overnight as a side effect of a drug I was on to treat the chronic migraines I was suffering. The drug’s name is Topamax. It is a rare side effect. But it is one that has left people permanently blind because they did not get help in time. The drug causes acute angle closure glaucoma. This can cause irreparable damage to the optic nerve, as well as other parts of the eye. I will not keep you in suspense – I am no longer blind. Well, legally blind, yes. But with glasses, I can see. Something I will never take for granted again.
· In March 2012, I underwent an emergency full hysterectomy due to uncontrolled hemorrhaging and the presence of precancerous cells. It turns out my uterus was 9 pounds of fibroids, tumors, and scar tissue. I was lucky to have it removed when I did. But the sudden onset of menopause and the healing from the surgery were no fun at all. I went back to work two weeks early because they told me it was critical to the new system they were rolling out that I be there. They took another six weeks to roll out that system. And then I worked overtime and stayed in a hotel near work because of several weeks of intense, stressful work rolling out a new computer system world wide. We were the test site and I was one of only 2 people who were working like crazy to get it up and running. This was a highly stressful time. We finally had all the kinks worked out by mid August.
· In September 2012, I had to have a long put off surgery to repair damage to my nose. The damage was so severe that my oxygen levels were getting dangerously low & even my CPAP couldn’t get air through on the 100% blocked off right nasal passage & 60% blocked off left passage. So, I had a septoplasty & turbinate resection surgery to correct that. It was painful! But it worked, and for the first time in 23 years, I was able to get air through my right nostril.
· From May through October of 2012, I began to lose the ability to use my left foot and right arm. What started as ankle pain quickly and drastically became foot drop and paralysis of my entire left leg. During this same time, my right hand began to experience severe numbness and tingling and I was losing the ability to grip. The pain in my shoulder and arm had been ongoing for years, but I had been told it was mild carpal tunnel. Test after test finally showed that I had degenerative disc disease in my lower back and neck with herniated discs, spinal stenosis, and bone spurs. I needed surgery. STAT. The longer the nerves were cut off, the less likely a full recovery.
· So, in January 2013, I had a lumbar laminectomy followed by a month of inpatient hospital rehabilitation. When I came out of surgery, I had no use at all from the waist down on my left side and minimal use of my right. My left hip flexor had atrophied and the physical therapists spent 3-4 hours with me daily working to get my left leg back to minimal assist status. They showed me how to stand, sit, bathe, get dressed, etc. I basically had to relearn how to be. They had a difficult time with many of the exercises because I still couldn’t use my right arm to help support myself on the walker. I had to use a platform walker. They did amazing things to bring my hip flexor back. They showed me how to reteach my body to walk using my brain, even though my leg was numb. I was able to leave inpatient care to go home for a couple weeks before my next surgery.
· In March 2013, I had cervical fusion surgery on my neck to fix the problems in my right arm & hand. This was also followed up by inpatient rehab. The same therapists worked with me daily for 3 more weeks.
This was followed up by outpatient physical & occupational therapy through August 2013. My foot drop is still there and muscle weakness is still present. I have a complete surface loss of sensation from the waist down on my left side. I have chronic nerve pain from my lower back down to my foot, but when they use the needle like devices to press against my skin, I feel nothing. I still have to think “pick leg up, set leg down, etc.” when I walk since my leg doesn’t receive the signals like it used to. I can somewhat wiggle my toes. I can just barely move my foot to the inside and outside. But the foot drop remains & the loss of reflex remains. My right hand is less numb. My grip has improved, but is still weak & weakens rapidly with use. My ability to pinch is gone. But I keep working at the exercises, hoping to get more ability back.
· Before I broke my right ankle on August 31, I was receiving a series of treatments at a pain management center for extreme lower back & hip pain. They believe I have nerve damage of the facet joints in my spine as well as my sacroiliac joints in my hips. They also suspect the years of prednisone may have left me with avascular necrosis of the hip. Which would mean a hip replacement. Eventually. I was recovering from the medial branch neurotomy when I broke my ankle. So, I’ve been pretty much bed bound with my leg elevated since & haven’t been able to get back to the pain management stuff. Sigh.
· I had gotten to the point of using my forearm crutches to get around short distances (<350 feet). Now I’ve been back in my wheelchair since I cannot use my left leg to propel myself without being able to put weight on my right leg. It’s a mess. I’m hoping I do not lose the ability to walk again once I am able to put weight on my right foot. I’ve tested it a bit, but I’m clumsy and am scared to go more than a few feet with my husband standing guard in case I fall. I cannot afford to fall again.
So, for now, I am in a wheelchair & I have to deal with what that entails. Unless you’ve been reliant on one, you don’t know just how inaccessible this world really is. Including my workplace. But that’s a different story.
See what I mean?
I spend an inordinate amount of time lying down as that’s the position with the least amount of pain. I cannot sit or stand for more than 30 minutes, anyway. One of these days I’m hoping to find an end to the pain. And if not an end, at least some coping methods that work.
In the end, I’ve been shaped by the pain, the hardship, the challenges, the losses (relationships, financial, physical). No one is immune to change. And a body under constant pressure will submit to that pressure. So, when I hear “You’ve certainly changed a lot” it’s usually in response to my being more direct and speaking my opinion. Sometimes it's because I have to put my own needs ahead of others. I have come to the conclusion that people say this when they don’t like that you’re not fitting into some preconceived box that you’ve been locked into for some time. Yes, I’ve changed. In many ways for the better. In some ways, you might say for the worse. But I am who I am. At least for now. Wait around awhile; I’ll probably be changing again.
Daily A-Moose-Ment:
In the Halloween spirit of things - I give you this poor little pup-moose! LOL
