"Happiness is a Choice." quote taken from an interview of Drew Barrymore by Kevin Sessums

Monday, August 16, 2010

Where the Hell Have I Been?

As some of you know, my parents made a two week visit to our home which was unexpected but very pleasurable. For the kids who love their Nana and Papa, it is unconditional love and fun just to have them around. For me it is therapeutic and supportive. As I have said before, Mom has PsA (psoriatic arthritis) so no doubt she understands the ups and downs in pain levels on a level that is beyond what I have experienced.

That said, however, I am having more and more days of unpredictable pain. Plans are being cancelled, new arrangements to be made and, of course, there is always disappointment. Most of the time this is pain I wake up to in the morning and even in this incredibly hot Dallas area weather, I have a heating pad on my back to try to help with the pain.

So I am trying to get my “act together” to resume my blog and continue the saga of my lab results…..so hang it there. I will be back!

Thursday, August 5, 2010

Lab Work Results Part II – Is My Near Death Experience Part of the Problem?

In previous visits, Elizabeth has said that I am practically a carbon-copy of a few women she also treats for RSD. We have several things in common: our age, our general health, our lab results, our weight and our body type. The one thing we also have in common is we have all had a near death experience. Our medical files are so similar that she and the other doctors who she meets with don’t believe that this is a sheer coincidence.

Elizabeth understands that because I had this near death experience in Namibia, there is no way that I will be able to get accurate medical records. Many years ago I attempted to do this and the medical notes were very skimpy and sometimes completely inaccurate.
Elizabeth explains that the reason why a near death experience can literally change a person’s life is because of what it does to the hypothalamus. As defined to Wikipedia, “The hypothalamus (from Greek ὑπό = under and θάλαμος = room, chamber) is a portion of the brain that contains a number of small nuclei with a variety of functions. One of the most important functions of the hypothalamus is to link the nervous system to the endocrine system via the pituitary gland (hypophysis).
The hypothalamus is located below the thalamus, just above the brain stem. In the terminology of neuroanatomy, it forms the ventral part of the diencephalon. All vertebrate brains contain a hypothalamus. In humans, it is roughly the size of an almond.
The hypothalamus is responsible for certain metabolic processes and other activities of the Autonomic Nervous System. It synthesizes and secretes neurohormones, often called hypothalamic-releasing hormones, and these in turn stimulate or inhibit the secretion of pituitary hormones. The hypothalamus controls body temperature, hunger, thirst,[1] fatigue, and circadian cycles.”
In layman’s terms, Elizabeth explains that the hypothalamus is the “computer” of the body. When someone has a near death experience, the hypothalamus is “reprogrammed” and, as a result, sometimes the person experiences changes in healing, energy levels, body temperature and metabolism. She asks me how I felt after I had healed from my c-section and I admitted that I never felt the same again. I began to gain weight, my energy level was incredibly low and my sleeping patterns changed. I just assumed that all of these changes were a direct result to being a new Mom (and consequently having another child), getting older, working, and moving around a lot. It never occurred to me that the pain in my legs and exhaustion had anything to do with an auto-immune disorder. Elizabeth honestly believes that when I nearly died, this opened the door for RSD to slowly develop in my body over time, masking itself as other ailments as it normally does until my accident in July was so dramatic that the diagnosis was finally made. Yes, I lost my “mojo” when I had that c-section and I have never gotten it back. Problem is, once you lose your “mojo” to RSD, especially almost ten years ago, is there any hope at all to get the “mojo” back?

Wednesday, August 4, 2010

Lab Work Results Part I – Re-Examining the Past

When I arrive at Elizabeth’s office, I am immediately brought into Jeff’s normal exam room. Tiffany says that this is a consultation visit only so I don’t need to be in the regular room. Tiffany tells me Elizabeth will be in shortly as she closes the door.

I know in my gut that I don’t have cancer and I am not dying. I know that these labs were ordered to evaluate my overall health beyond the RSD…….vitamin levels, cholesterol, glucose, etc. My cholesterol and glucose levels have always been low, so that can’t be the problem. What in the world could be the “new” problem?

Elizabeth comes in with my chart and several pieces of paper. She sits down directly across from me and uses the examination table that sits in the middle of the room as a desk. She asks me to pull up my chair to the table. She leans forward and puts her hands on the paperwork and looks at me directly in the eye. She tells me that she needs to ask me a very important question and she apologizes for asking it because it is not normally a question someone asks another. I tell her to come out with it……ask it. She takes a deep breath and asks me if I have ever had a near-death experience.

Although the question surprises me, the way Elizabeth is looking at me you would think she asked me if I had led some “secret past” involving drug or alcohol abuse. I answer “yes” and she looks both relieved and upset all at the same time. She asks me what happened and I tell her. What I told her is the “cliff notes” version of what I will share now.

In 1997 I was 29 years old. I had never been married and had no children. For many years I tremendously enjoyed my single life by attending college, traveling alone and with friends, living on my own, writing poetry and short stories (with some of them published in the United States, England and Australia), working various jobs and dating, dating, dating. Although like most people I had dated a couple of duds, I was really blessed that I had dated some really terrific men. Many of my friends who had already married were either divorced within a couple of years or were still married but miserable. Some of them were already on a second marriage and others had sworn off marriage altogether. So needless to say, I was very leery of getting married.

A friend of mine suggested that join a “chat site” that had nothing to do with dating; it was a “pen pal” site dedicated to making friends around the world sans the snail mail process. It seemed like a fun idea so I signed up and entered the site. After being online for just a few minutes, a “Michael” from South Africa came online. Michael was considered one of the original members of the site “family” because he had been on that site since it began. But none of that mattered to me; by the end of our “introduction” on the site, I knew that somehow, some way, Michael and I would be married. I can’t explain even today how or why I knew this; I just did.

Within a matter of months, we had exchanged photographs, were openly discussing our feelings for one another and then began chatting on the phone. By this time, we had chatted almost everyday on this site plus we were sending each other pages and pages of emails. Then during one conversation, Michael asked me if I could come to South Africa for the Christmas holiday. Originally Michael thought that here in the States, we had the same three week holiday “break” that they had in South Africa. When we discuss the cost of the airfare and the amount of time I would have to take off work to be in South Africa during this break, I simply told Michael that if I went to South Africa, I wouldn’t just do it as a trip. After a pause, Michael told me that if I flew out to South Africa, he would want me to stay. So when I asked him what he meant by that, he told me that if I flew to South Africa, he would want me to stay and have us get married. It may have been an awkward marriage proposal, but considering the circumstances, it wasn’t like Michael had any experience asking a woman who lived thousands of miles away to marry him. I immediately said yes and then wondered how in the world we could make this happen.

As it turned out, I flew out the day after Thanksgiving in 1997. Although I was now 30 years old, it is putting it mildly that some of my friends and my family thought I was completely crazy and concerned for my safety. Others however were caught up in the “romance” of it all and how old-fashioned in some ways it seemed; rather than developing our relationship on looks and material things, it was developed on conversations, emails and chatting. I asked my family to have faith in my decision and with great hesitation, they did.

Some people might have thought that I would come home in a matter of days with my tail between my legs, but that was far from the truth. On January 9, 1998, we were married at a pastor’s home with one of Michael’s sister and her husband as witnesses.

We wanted to begin a family immediately and this proved to be an incredibly difficult and emotionally painful experience. In the States, I was already diagnosed with psoriasis and it was suspected that I also had polycystic ovarian syndrome since I had several of the symptoms although I was not “officially” diagnosed with it until years later. I had no difficulty getting pregnant, but once I found out I was pregnant, I would lose the baby within several days. The last time we attempted to get pregnant in South Africa, I lost our baby on Mother’s Day and was hospitalized for five days due to an infection. Michael and I were heartbroken.

Then in December 1999, we had an opportunity to move to Namibia. Michael was born in Namibia which was called South-West Africa back in 1968. Once Namibia became an independent country, everyone who was born in the former South-West Africa had dual citizenship. So in December, Michael received a call from his oldest sister who asked us to move to Namibia and we did. While Michael sorted out his paperwork (getting a copy of his “new” Namibian birth certificate, getting a Namibian passport, etc.), we lived at his sister’s home. Despite the fact I didn’t know Michael’s sister, we hit it off immediately and I am eager to help her run her meat and fish shop that is attached to the back of her house. She is also aware of our previous problems having a baby and she encourages us to try again. Michael and I agree, but I tell him that if we lose this baby, I just can’t try again.

Within a couple of months, we learn that I am pregnant and decide to keep the news a bit quiet. Sure enough within days of learning of the pregnancy, I begin to bleed. My doctor tells me to go to bed immediately and raise the bed up at the end with bricks. The bleeding stops quickly and several days later the doctor confirms that I am still pregnant. We are delighted and we begin to let more people know, including my parents, that I am pregnant. A couple of weeks later, Michael and I get our own flat and I find a new doctor in our new town. In my second trimester, I have some severe cramping and after a brief few hours in the hospital, I am released. In my third trimester, I am put on light rest.

When I am at 40 weeks, I have an exam because I have no hint that I’m going into labor. After the exam, I begin to bleed so I am referred to a hospital in Windhoek, the capital of Namibia. After an ultrasound and general exam, I am still bleeding so the decision is made to induce. Although I have horrible back labor pains, my cervix does not dialate. Several hours later, I am given a second dose with the same reaction. I then fall asleep and when I wake up, the right side of my abdomen is at least twice as larger as my left side. An emergency c-section is scheduled and as I am signing a bunch of forms and trying to talk to Michael at the same time, I am being prepped for surgery. Now my life and my unborn baby’s life are in jeopardy. The sisters (nurses) ask me if there is only one opportunity to save me or the baby, whose life should be saved? With absolutely no hesitation, I tell them to save the baby. Michael absolutely freaks out, saying that we can have another baby. I can’t speak for other expectant mothers, but to me my “role” as Mom is to sacrifice for my child. I have lived a life and it has been a wonderful life. I will not deprive my child to have a life to save mine. As I am wheeled into surgery, I accept the fact that I will die to save my child.

Since I was put under a general anethestic, I can only tell you what I heard from the doctors and Michael afterwards. Because OUR situation was so dire, my incision was literally from hip to hip. When our son was born, he was dead. For some bizarre reason, Michael was asked to come into the surgical room while Jared was being revived and I was on the surgical table. Michael was brought in seeing blood dripping from my feet. I don’t know how long my surgery lasted, but I do know that I nearly died. Although I heard that I nearly bled out, I was also told that I didn’t receive a blood transfusion. After the surgery was over, Michael was asked to visit me in recovery because I would not wake up. Someone asked him to say something that would grab my attention and all he could think of is tell me that we had a son. I know I heard it and yet it still took several more hours for me to fully wake up after being pumped full of drugs. I know I asked about our son and I spoke to my parents on our cell but I don’t remember the conversation.

Our son was in the NICU because although the doctors confirmed that he was full-term, he only weighed four pounds. The theory was that at some point my placenta stopped feeding him. I was released from the hospital seven days later and our son remained for another two weeks. When our son was discharged, all the nurses and doctors who were there told us we were the “miracle” family. They honestly said that they never thought either one of us would leave the hospital alive.

Elizabeth looks at me and is clearly stunned. After thinking for a moment, Elizabeth tells me that she believes that this near-death experience ended my life as I knew it and it opened the door of life with RSD. Now we are both stunned. How can a near-death experience almost ten years ago have anything to do with my RSD?

Tuesday, August 3, 2010

A Move Forward

My next visit with Elizabeth is to focus on moving forward with the dorsal column stimulator and to order the lab work. Elizabeth knows that I have wanted to try water therapy first, but I have been unsuccessful to find a therapist for it and it will cost too much money anyway. My pain levels have been rather consistent the past few weeks as constant, aching, burning, pins and needles. As before, my pain levels are always higher in the early morning and in the evening. The cold weather plus standing and walking makes my pain worse. Being warm and still improves my discomfort. Elizabeth is frustrated that my left ankle and foot is STILL swollen.

Although Elizabeth knows that I want to discuss the “pros and cons” with the dorsal column stimulator, she feels that Dr. Lew can answer my questions completely with literature and a CD to take home. I agree that despite my previous reluctance to pursue this avenue of pain management, I’ve reached the point where I must be open to this possibility. Before I have always been resistant to this type of pain management and yet I can’t really give her any good reasons as to why. Maybe it makes my RSD that much more real?

As Elizabeth and I end our brief visit and I am told that Dr. Lew’s office will call me to make an appointment, I am given a large list of labs that need to be drawn…….a total of seven vials. I leave the office and go next door for the blood work.

Several days later, I receive a call from Heather, asking me to come in that day, despite the fact that my next appointment with Elizabeth is tomorrow. Heather can’t hide the urgency in her voice. What I learn shocks me to my core.

Monday, August 2, 2010

Time to Put My “Big Girl” Panties On

Sometimes when you fall, you fall BIG TIME and have to literally climb yourself out. Other times you just need to get your ass up and dust yourself. After many weeks of feeling sorry for myself and focusing on what I can’t do rather than what I can do, it is time for me to do just that and put my “big girl” panties on. Yes, money is tight. Yes, it hurts to sleep in my bed. Yes, I’m not doing the therapy Elizabeth is asking me to do. Yes, I am resistant to listening about the dorsal column stimulator. But all in all, I can only control what I can control and let the rest of the nonsense and guilt go.

So I make a commitment to tell Elizabeth at our next appointment that money is tight and it will remain tight due to this economy. I can’t blame Michael for the cut in pay when his corporate office is making these decisions. I will open my mind to listen to the pros and cons of the dorsal column stimulator in lieu of physical therapy. I tell Michael that yes many of a morning my body hurts like bloody hell to sleep in our bed, but for the sake of our marriage and to regain the intimacy that we’ve lost, I will sleep in our bed again.

I also decide to meet Michael part way with my PTA responsibilities and instead of being a vice president on the PTA board, I will take on another lesser responsibility the following school year. I will let Michael and the boys know what household chores I can and can not do so that we can plan how to keep the house cleaner. I will ask friends for help when I need it and not feel guilty about it. I will own it when I hurt or I’m upset and when I feel relatively good, I will “celebrate it” by cooking a special meal.

What seems like a high-five for pulling my “big girl” panties on, my brother phones and says that he and his family want to come during spring break for a visit. My parents then make plans to arrive a day later than my brother and stay a few extra days after my brother leaves. For the first time since Christmas time, I am feeling a weight lift from my shoulders and feel okay about seeing Elizabeth again without the guilt. I’ve embraced a new way of thinking and look forward to learning more about the dorsal column stimulator. It is a new day and a new way of thinking and for the first time in a long time, I am happier.

Sunday, August 1, 2010

Family Snag

When I was first diagnosed with RSD, my husband Michael went right to the internet and downloaded on his computer and mine a booklet about RSD so that we could intellectually understand what RSD is, what can cause it, and how to possibly treat it. We both read it and made comments to each other about it. Yet as the days since my diagnosis turned into weeks and months, it was clear that no booklet could “educate us” on the effects RSD would have on our family and our marriage.

For the first couple of months, we stumbled along like I’m sure most people do. The expectations of me being a stay-at-home-mom remained the same in Michael’s mind even though I knew that some things were difficult for me to do. My interest in cooking due to the standing and repeat motions like opening cans and stirring things immediately waned. I found this activity that I once loved taxing and when we were receiving the dinners from the PTA moms, it was an absolute relief. When I had to make food, I was finding myself making sandwiches and spaghetti and heating up soup…..the simplest things to make. We were flying through the deli meat, cheeses, bread and tinned soup, but I didn’t care. As long as everyone got fed, that’s all I cared about.

When my parents arrived in December for the Christmas holidays, my folks helped a great deal with keeping the bathrooms cleaned, vacuuming and the laundry. Dad went with me to grocery shop as he always done before. Dad bought an electric can opener to ease my wrists. When they left, I not only missed them, but I missed the help with the ins and outs of running a house. Despite their own aches and pains, they jumped in as always to help with whatever needed to be done.

January and February are difficult months. Here Michael is working a full-time job, the kids are in school and have homework and projects to do and all I want to do is be on the couch. It isn’t just because I am depressed…..it is because I hurt…..A LOT! I don’t know how to manage my daily household activities without my body screaming and my daily wardrobe is my pajamas unless I have to leave the house. The house is now looking like a bomb has gone off (at least compared to how it normally looks) and Michael and the kids are making comments about the mess. Elizabeth wants me to be in physical therapy yet the type she wants me to do is not available and even if it is, I can’t afford it. Michael’s overtime has now been cut to an “as needed” basis and so now money is tight for even our most basic of expenses.

So when I tell Michael that Elizabeth would like me to exercise by doing water exercises at the athletic center, we both know we can’t afford it. Even though the monthly membership might be paid in part by our health insurance, we don’t know when and how much. Then there is expense of the extra gas for my car due to the commute back and forth to the athletic center which is at least 15 minutes away. Michael thinks that I need to stop my PTA activities and responsibilities immediately. After all, how can I volunteer for the school and yet struggle to vacuum, clean the bathrooms or cook a real dinner? I argue that it is my only social outlet that gives me the opportunity to see friendly faces and makes me feel like I am useful AND capable of doing things that ultimately benefit our children. Michael simply can’t wrap around his mind that PTA activities don’t hurt me physically to perform and the household chores do, particularly at the latter part of the day. I realize that my sleeping in the living room for more comfort is adding to this problem. We are no longer living like a married couple because we aren’t sleeping like one. We are communicating and yet we aren’t listening or appreciating what the other is saying. The failure to get anything done to anyone’s satisfaction, including mine, opens my depression pit wider and wider and I fall.

Thursday, July 29, 2010


Through out my life, I have noticed that you truly learn who your friends are when you are in crisis. The first time I experienced this since being a mom was when our oldest son suddenly became incredibly ill during our younger son’s birthday party in June 2005. Our oldest son has asthma and yet it was clear that what seemed like a mild cold the day before was suddenly much, much more. It was a Saturday, but his pediatrician was on-call. After speaking to his pediatrician twice and reporting his increasing temperature, he got irritated with me and said that if I was that concerned, I should take him to the ER. So in the middle of the birthday party, Mom and I took my oldest to the ER and immediately was he admitted with pneumonia. When we called Michael and told him what was wrong, I then spoke to a couple of adult female friends who were at the party and asked him to pack some things so I could sleep with him at the hospital. After the party was over, Michael brought the packed items and then went home with our youngest son while I stayed at the hospital. The next evening, I came home so that my husband could take a turn at the hospital while I returned calls and got some much-needed sleep. One of the calls was to my best friend who was also the godmother to both boys. I was exhausted so the conversation was short, but I told her how he was doing and I thanked her for helping pack things for me and also helping to pick up the house after the party. We made plans to talk again the next day. I left messages over the course of several weeks and even spoke to her mother who she lived with her and asked if my friend was sick or mad at me. No, she wasn’t sick and her mother didn’t know why my friend wasn’t returning my calls. To this day, we have not talked since. She hasn’t answered one email, one card, or one call. Recently my mom even called and left messages, one even with her mom, and still no return phone calls. Here I thought my best friend and the godmother to my sons would be there for me when one of my sons was desperately sick and instead she disappeared with no warning, no communication, no fight, nothing.

So when I was diagnosed with RSD, I was bracing myself for how people would react. My parents were upset because Mom knew exactly what RSD is and explained the diagnosis to my father. My brother was also upset and was also educated by my mother. They were taken aback that a woman who was always a tomboy and had bumped and bruised her way through life was suddenly a RSD patient. Yet despite everything, they have been by my side and have listened to all the highs and lows I have experienced throughout this journey.

But when it came to friends, word spread quickly among our school’s PTA that I was now ill. A dinner-delivery sign-up was put together by a PTA member and several dinners were indeed delivered to our home. Some women who barely even knew me signed up and indeed delivered some of these dinners to our home. Others who I knew better did not sign up and at the time I figured that they were too busy, didn’t want to cook, it was the holiday season or money was tight. I never took personally who didn’t sign up, but was incredibly grateful to those who didn’t even know me and yet brought these incredible meals.

So after the holidays were over and I continued to be symptomatic, it was amazing to see who called, who asked how I was and who even asked if there was something they could do. A couple of closer friends did all of these things initially and even suddenly dropped out of sight. Again, calls don’t get returned, emails are ignored and I don’t see them at all. It hurts me like crazy and I wonder if this is about the RSD or if this is just the way they are; they make friendships, dump them and then move on.

What has surprised me the most is that some of them were not what I would call “friends”; we didn’t have get-togethers beyond play dates and didn’t socialize outside school-related activities and yet I figured we had enough in common for them to at least check on me, ask if I was okay, or did I need anything. It was disappointing that they wouldn’t do the simplest acts of kindness.

However, what was surprising was how many people who I barely knew did indeed do these simple acts of kindness and, as a result, have become friends. It is not so much the act itself that makes it so special; it is the fact that they THINK to offer or THINK to call that makes this kindness extra special. It is nice when you don’t even have to ask because they offer instead.

Unfortunately it happens all to often that when someone is diagnosed with an illness, some people act is if it is “contagious” even if it isn’t the case. I’ve seen this happen to people who I have been literally at death’s door and I’ve seen this happen to people who have something that is permanent yet not fatal. Regardless of whether the person who does this is an acquaintance, a friend, a family member or a best friend, the pain caused by this “desertion” is indeed devastating. I wish people who have behaved this way recognize that indeed they could have done more for their friend in need and I also hope that this never happens to them. People need to learn that these acts of kindness not only help the person in need, but helps those who do the act learn more about themselves.

So to those who have been there by my side the entire time since my accident to now, thank you. To the friends that I am making now as a result of this blog, I understand how it feels if this has happened to you and you are not alone.