Tuesday, August 21, 2012

On Losing a Mother

Mother - she is the one with whom we experience our very first relationship. From the moment of conception we are bonded to her.

She is the first voice we hear.
The first face we see.
The first touch we feel.
She loves us unconditionally and without reservation.

So is it any wonder when we lose our mother that the loss runs so much deeper than we could imagine.

I lost my mother on July 18, 2012. She had reached the marvelous age of 87 years and 8 months.

There still are no words to describe the loss that I feel on having her ripped from my life. I was her primary caregiver for six years - helping her with all her banking/financial needs, taking her shopping, attending to all her medical appointments, ensuring her medications were properly counted and in the last year arranging for her pharmacy to use convenience packs and deliver her medications to her door. I was her liason to the outside world. If there was a medical emergency, I was there day or night. I spent one day every week with her and enjoyed a lunch at the retirement home where she lived. I even got to know her friends and enjoyed their company too.

So when she suffered a catastrophic fall in the early morning hours of July 9th, I was called to the hospital at 3:11am.We had just been at the hospital on July 7th for pain she had been suffering in her thighs for a few months. It has escalated to a point that she could not bear it any longer, so after spending 7-8 hours in emergency with no real answers, she was discharged with a prescription for strong narcotics. I remember questioning the doctor on call - would she be alright to go home where she lived alone on such a strong drug? She had already been given quite a lot at the hospital and was in and out of consciousness from it. He reassured me that she would be fine and signed the discharge. I took her home and stayed with her until the following night when I was so exhausted I had to get home for some sleep. I left her in bed, then called her at 10:15pm to ensure she was still in bed and alright.

Then came the call at 3:11am from the management where she lived. The story was sketchy, but she had fallen sometime between my phone call and midnight, suffered shock and crawled around her room looking for the emergency pull cord which she finally found around 2:00am. The fall tore chunks out of her right forearm, put her into acute renal failure and rapid onset dementia. She also was put on oxygen full time as her saturation levels would drop the moment it was removed.

So the next 11 days were spent with her writhing from the thigh pains which brought on muscle spasms every minute or so. She beat her legs begging God to take her life, then in the evenings she "sundowned" which is a term for nightly delusions/hallucinations and rather surprising bouts of strength in a dementia patient. She would call for help as she thought she had been kidnapped and insisted that we get the police to come. She would try to get out of bed, tearing at her clothes. It left me feeling so helpless, so angry, so overwhelmed with emotions I could not control myself. To witness this - my mother in such excruciating pain, such confusion, delusional and in and out of consciousness was overwhelming for me. It became so unbearable and emotionally draining for me that I too begged God to take her and stop her suffering.

Finally on July 18th, she suffered a setback and the doctor suggested to me that the family come in if they could. She was lucid enough that she was able to spend a little time with us, but slipped into unconsciousness around 6:30pm and then passed at 11:40pm.

I sat with my two sisters, my brother and my husband as we watched our mother take her final breaths. I watched as her breathing became more shallow, watched as her aura turned black. I held her hand as she took her last breath. As she left I could feel my breathing stop when she passed that moment of transition.

Was it real? Had she really died? It seemed like a dream when the nurse came in and pronounced.

Now four weeks later I am angry. Angry at Oshawa Hospital's emergency department for not keeping my mother in the hospital after administering such heavy narcotics and sending an 87 year old woman home on this same narcotic every four hours. Even the head nurse who helped me get mom into the car said, she should not be discharged in her condition.

Would she have suffered the fall and died if they had kept her? I don't know. Christians believe that our day to depart this earth is predetermined. If that is so, then maybe she could have experience an easier death under different circumstances.

Now I must look ahead and move on through the grieving process. I still wake up most mornings, sometimes in the middle of the night crying. But then life takes over and I put those tears away to get on with my days. Sometimes I want to curl up like a child and just cry my heart out for my mommy....

She was a good woman. She was a good daughter. She was a good wife and she was a good mother. Strong of character, loving and supporting only one man (my dad) for her lifetime. She loved me, nurtured me, taught me right from wrong, taught me through example how to be a kind and compassionate woman and instilled in me the ability to make beautiful things.

Thank you mom.

"If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart ... I'll always be with you.” 

Wednesday, February 22, 2012

Important but Seldom Discussed Disease

Lichen Schlerosus

A post warning. This post deals with information and graphic descriptions that may offend some readers.

Have you heard of this incurable skin disease? I hadn't either until recently, after suffering for over a decade, I was diagnosed with it.

Here's a brief description of this rather nasty disease...

Lichen sclerosus is a skin disorder that can affect men, women, or children, but is most common in women.

It usually occurs on the vulva (the outer genitalia or sex organ) in women, but sometimes develops on the head of the penis in men. Occasionally, lichen sclerosus is seen on other parts of the body, especially the upper body, breasts, and upper arms. The symptoms are the same in children and adults.

Early in the disease, small, subtle white spots appear. These areas are usually slightly shiny and smooth. As time goes on, the spots develop into bigger patches, and the skin surface becomes thinned and crinkled. As a result, the skin tears easily, and bright red or purple discoloration from bleeding inside the skin is common.

More severe cases of lichen sclerosus produce severe scarring that may cause the inner lips of the vulva to shrink and disappear, the clitoris to become covered with scar tissue, and the opening of the vagina to narrow.

My problems started a few years after a total hysterectomy. First with discomfort and burning during intercourse which proceeded to frequent tearing. Then a few years ago the tearing moved from my perenial area to my anus and was diagnosed as anal fissures. I underwent two cauterizations for them with no positive results, still frequent tearing and excruciating bowel movements. The more I tore, the harder my bm's became. So then I was also struggling with severe constipation. It wasn't long before intimate relations with my husband became impossible. even wiping after urinating caused tearing. Every time I saw my gynacologist, he said, " this is a normal part of aging, thinning skin, learn to live with it". I should at this point have pursued another opinion as I have since discovered that not many doctors are acquainted with this disease.

Thankfully, one day at my hair stylist, we got chatting about female problems and I asked her if she was having problems with the dryness and tearing. She also had undergone a total hysterectomy. She said no, but had been diagnosed with LS years ago for which she was referred to Dr. Shier. Turned out she did not have LS, but she was impressed with him and suggested that I see this doctor. So I thank God for Catherine who steered me in the right direction. I had never even heard of LS, but needed to do something as the incessant itch with this disease was driving me to the brink of insanity, not to mention the tearing, bleeding, pain, etc...

I have recently joined two chat rooms to talk with other women suffering with this disease, which has been of tremendous help to me in coming to terms with this disease. It also makes me feel fortunate as I have not experienced the horrors that some of these women have gone through - for example surgeries to open a totally fused vagina. My fusing seems minimal compared to this.

One other side note here - it is believed by the medical communiy that LS is caused by an over active immune system. The alternative world believes that it is the toxicity in the liver that is to blame.

I am still working to control this and also to decide how to proceed from here. The doctor at Sunnybook Hospital who diagnosed me, immediately prescribed Clobetasol (a strong corticosteroid) to be used generously twice a day to reverse the fusing which is common with LS.

Wanting to try a more natural approach I did use the steroid for approximately one and one half months before switching to Perrins Complete http://www.perrinsproducts.com/ which I faithfully use twice a day.

When I went in for my followup, the fusing had reversed on my inner labia, but my clitoris is still under scar tissue. When the doctor found out I had stopped using the steroid, he emphatically stated that my use of Perrins and not the steroid was the reason for this poor progress (in his opinion) and then walked out of the office. His nurse said Dr. Shier's instructions were that I should be monitored every six months by my family doctor. He refused to see me again as I was not following his protocol.

While I empathize with his position, he did not take my feelings into account whatsoever or even ask why I decided to stop using the steroid. I struggle regularly with a massive overgrowth of gut candida, so does it really make sense to be slathering generous amounts of steroid creams on my genital and anal area? Yeast loves and thrives on steroids! Not to mention that cortisone thins skin and I already have precariously thin skin that tears so easily. It's interesting to note, that most of the women that I chat with all use the cortisone very sparingly due to the side effect of thinning the skin.

So now, my dilemma is - how do I find a doctor who can monitor me? This disease puts me at a higher risk for vulvar cancer, so do I continue to sparingly use the steroid? Do I only use the Perrins which has given me some relief? Do I follow the toxicity screening ($400.00 charge) and liver cleanse suggested by my naturopath?

My journey to health over the past few years tells me that steroids are dangerous, but the results shown in studies by this doctor on women with LS are outstanding. And at this point I can't say whether the steroid or the Perrins is responsible for the reversal in fusing and healthier skin tissue.

I don't feel that this is something I can afford to fool around with due to the seriousness of the outcome of neglecting it. Plus I saw how quickly it professed with me before I was diagnosed.

The journey continues......


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