Monday, February 21, 2011

I hate depression

I'm depressed again. I don't know when it started but I'm fully entrenched in it now. I don't want to get out of bed, I'm irritable, I don't shower everyday, I go to work grudgingly, I don't enjoy my hubby like I should, I don't enjoy much of anything. I'm unhappy with my body (I've gained weight recently) and hate choosing what to wear in the morning, yet I don't want to workout. I'm tired of picking up the house. I've been struggling with the issue of childbearing (see previous post) and the sadness that comes with my decision not to have a child. I'm moody. There is nothing there when it comes to intimacy either. On the weekends, I sleep a lot and don't bother to get dressed. Lately I'm not even brushing my teeth. Ugh. It's affecting my relationship in so many ways that I'm concerned, yet I feel powerless to do anything. It takes so much energy and work...

Some days are better than others, but I inevitably want to do nothing by the end of the day but go to bed and forget everything.

I recently went off one of my meds thinking that I don't need it all year. I was taking lamictal to supplement the Cymbalta when I go through my yearly depression in August. Figuring this phase only happens then, why should I take yet another drug that I might not need except for a brief period each year. I've been off for at least a month after tapering down. Today I took my first dose to see if it will help (doc ok'd this strategy).

Depression has been with me since I was a teen. My dad has it - might even be bipolar. Is it genetic? Is it related to EDS? Is it just me? I've had two major depressive episodes in my life, with one ending up in the hospital (checked myself in; slipped through the cracks in the medical system - long story). I've been on some sort of med since 1999, but it seems my body is able to defeat the effectiveness of it. I know I need to seek counseling, but it takes so much effort to find someone that fits right. How many therapists have I seen in my life - too many. I know from experience, though, that the combo of meds and therapy are the most effective for me. It can't be too inconvenient for me to go to the therapist or I'll stop going so I have to find someone nearby home or work. Hypnotherapy works well for me to shut off my self-critical conscious mind. Sometimes I wish I could just hypnotize myself out of my problems! Ha ha! Maybe I should ask...

I'm getting up to make the call to a therapist near my work now. I can't let this get too much farther out of control. Depression sucks.

Baby on my mind

"You have to want it more than you fear it." - unknown

I've always wanted to have a child of my own. I seemed to only find men who didn't want children, though; or, if they did, they were just not the right guy. What was up with that? Then I met Mr. Right. A few dates in, I learned that he had decided not to have any more children, that his two beautiful teens from his previous marriage were sufficient. However, I was falling for him and had to decide whether to end the relationship and continue to search for the right man to have children with, or give up that dream and take a risk that a life without my own child could be very fulfilling. I had a heart-to-heart with my mom, mother to three children, and we discussed the pros and cons of my possible futures. I decided to continue dating Mr. Right and today we are happily married. I love his children as my own.

Six weeks after we married, I was diagnosed with Ehlers-Danlos Syndrome (Hypermobility Type), a painful genetic condition. My husband told me that he had been prepared to ask me about having children because he loved me so much, but this new diagnosis and all the uncertainties that we faced nixed that idea. Genetically, there is a 50/50 chance of having a child with EDS, and then the manifestations are different person to person. I also struggle with clinical depression that also seems to have a genetic component, though it's possibly related to the EDS. In addition to the risk to the child, it's possible that the damage to my own body from the relaxin hormone released during pregnancy could leave me disabled. This hormone is what enables the pelvis to relax/spread enough for vaginal birth. For some women with EDS, their pelvis is never the same.

So, life has been fine without a child in the house. We travel a lot; I can sleep in regularly; and we enjoy eachother's attention without much distraction. Yet I have this emptiness deep inside that I've been struggling to keep quiet. Am I making a mistake by not asking my husband to have a child together?

My two best friends have very different baby stories. One friend had an unexpected pregnancy that ended in an amazing, smart little boy who was intensely loved by his single mother. The boy's father was not in the picture until he was a toddler and even then, my friend didn't want him around. The father was dangerous and took unnecessary risks in life, so it was inevitable that his son would get hurt. My friend tried to limit contact and even took court action but they favored the father. At 5 1/2, her son died in a tragic accident caused by his father. She has never been the same. Though I knew her since she was pregnant with her son, she and I only bonded after his death. She's not able to have another child due to age, but she's considered adoption. However, she is also taking into consideration that she's enjoying her life as is, with no child or husband.

My other friend just had a beautiful baby boy a month ago. She never wanted kids but she married someone who really did. She said the other day that if she hadn't had a child, it would have been a big mistake. She's totally in love and will be an amazing mom. It's neat to be around a newborn too. Could I handle a newborn?

So, DH and I finally got around to the subject and he just doesn't see how it is possible, especially since he'd have to have surgery. He's also of similar mind to me that this world is pretty f'd up. And then I saw the quote above on a friend's Facebook page. She actually wrote, "When it comes to making big decisions - you've got to want it more than fear it." That struck a HUGE chord with me. At this point in my life, I have way too many fears about bringing a child into this (crazy) world. I think I'm done.

Although I know I'll have more moments in life where I regret not having a child, I now have this saying to look back onto. I don't like to succumb to fear, but this is one decision that will forever be ruled by it. If I were younger and unaware, I could have ignored my fears of the world we live in - who's to say we wouldn't have the world's next Nobel Peace Prize winner, or president; plus being a good mom is one of the best jobs ever. EDS is too big for me to handle. Plus, what if we had a child with autism or some other disability - yikes! I don't know how those moms do it on top of handling their own disability. At least EDS is familiar. I guess you do what you have to do for the loves in your life.

So, I will be the best mom I can to my two beautiful grown-up kids and will spoil my future nieces/nephews like crazy. My bff has also granted me honorary auntie status for her little guy. I am so grateful for these younger people in my life.

God works in mysterious ways...

(Do any of you deal with these worries or issues? I'd love to hear your perspective.)

Friday, January 28, 2011

2010 New Year's Resolution achieved

I'm not sure I've ever taken New Year's resolutions seriously since the joke is that they are always broken. However, I publicly stated two last year and actually achieved one of them, to my surprise!

I planned to get my pain levels under control and succeeded. It's been several months since my last serious post but I know I blogged about my stress over switching pain medications (click here). This change was one of the best decisions I've made in a long time though. I can say that my pain is generally now ~2-4 on the pain scale on a daily basis. Of course I have my days, my injuries, and seasonal/hormonal issues that impact my general well-being, but I feel more in control of my life and less anxious about long painful days.


Sunday, January 9, 2011

Obligatory "it's been a long time" post

I guess I got writer's block, or blog fatigue, or just lost interest since my last post. Really, I think I got EDS overload at the last conference, in a good way, but I also got socked with one month of insomnia just after the conference, which didn't help my desire to write on my blog. Got me off track.

Lots of changes happened at the EDNF since July that I'm still at a loss to understand, and I've felt a bit removed from it since it changed hands. Perhaps once they get the message boards going again I'll feel differently - more connected.

You know how bears hibernate In the winter? I think my hibernation period starts in August. I always get a little low around that time of year for some reason. Not like people with SAD because I perk back up in November. It's weird.

We went to Australia in Sept/Oct and yet I still didn't feel inspired to write. When we got back, I had a major work deadline for end of Oct. Then post-grant recovery. I found out two of my friends have breast cancer (one a rare type and the other has metastatic bc)- a heartache. Then we hosted Thanksgiving. Decembers flew by! I did most of my gift shopping online this year - wow, great feeling to avoid the malls! Went to my parents house for Xmas. At in-laws for NY holiday.

Now it's 2011. Time to start afresh...

Thursday, July 1, 2010

Gray matter atrophy?

I've been bothered a lot by my cognitive changes over the last 10 years, which seem to get worse daily. I'm almost 40 so I shouldn't be having much, if any issues with memory, etc. However, those of us with EDS (and people with Fibromyalgia) know that it is all too common to lose thoughts, feel foggy, forget everything, and generally feel stupid. It is very frustrating to me that I cannot remember things that were once very important to me - for instance, I hear something interesting on the news (NPR) and then can't bring it into a conversation later that day. The only condition in which my memory doesn't seem to fail me as much is when there is a visual cue attached to it, which is very helpful especially when I need to find something I misplaced! At this point, how much of what I feel is from the pain, from the meds, or from EDS?

Anyway, because of where I work and my general interest in reading scientific literature, I've heard a lot about gray matter atrophy and chronic pain lately. Basically, the outer part (gray matter) of the brain shrinks and loses volume - it ages prematurely. In depression, treatment with anti-depressants can reverse some of the damage/shrinkage in the hippocampus. Is there anything that can help with pain-related damage to the gray matter? One of the articles below seems to suggest that pain management might be helpful.

I wish I understood this topic better and hope there is someone out there who can alleviate my fears of losing my cognitive skills/function at too early of an age. Maybe there will be someone at the EDNF conference this month who can address this issue? Without hope, there is nothing. 

"The function of gray matter is to route sensory or motor stimulus to interneurons of the CNS in order to create a response to the stimulus through chemical synapse activity. Grey matter structures (cortex, deep nuclei) process information originating in the sensory organs or in other gray matter regions. This information is conveyed via specialized nerve cell extensions (long axons), which form the bulk of the cerebral, cerebellar, and spinal white matter." Wikipedia

"As gray matter decrease is at least partly reversible when pain is successfully treated, we suggest that the gray matter abnormalities found in chronic pain do not reflect brain damage but rather are a reversible consequence of chronic nociceptive transmission, which normalizes when the pain is adequately treated." J Neurosci. 2009 Nov 4;29(44):13746-50. 

"Local morphologic alterations of the brain in areas ascribable to the transmission of pain were recently detected in patients suffering from phantom pain, chronic back pain, irritable bowl syndrome, fibromyalgia and frequent headaches. These alterations were different for each pain syndrome, but overlapped in the cingulate cortex, the orbit frontal cortex, the insula and dorsal pons. As it seems that chronic pain patients have a common "brain signature" in areas known to be involved in pain regulation, the question arises whether these changes are the cause or the consequence of chronic pain. The in vivo demonstration of a loss of brain gray matter in patients suffering from chronic pain compared to age and sex-matched healthy controls could represent the heavily discussed neuroanatomical substrate for pain memory." Schmerz. 2009 Dec;23(6):569-75.[in German]

Sunday, June 13, 2010

Crying out for Purpose

I sometimes feel like a "Jill-of-all-trades" with just a job, not a life work that I love or a true calling. I have several people close to me who have that sense of having purpose and have been able to pursue their passion. I don't know what mine is, and I'm almost 40.

There have been times in my life where I thought I knew what my purpose in life was supposed to be, but I've never followed through (like next level of schooling) for a variety of reasons. I got my BA in Cultural Anthropology but never pursued anything in that field. Some things I've tried: acupressure, herbalism, nursing assistant with the intention of doing hospice care, basic dance instructor...

Past Pursuits
Acupressure: did very well at this for several years but struggled at the end with lack of continuing education and mental/physical fatigue (did I mention my high level of empathy as well as my EDS?). I can go into this more at a later time - loooong story.

Herbalism: I entered a group apprenticeship for a year and left after ~4 months in complete frustration. The teacher was not teaching anything that was promised and got sidetracked by another student to focus on flower essences, which I just couldn't believe in. I wanted the true, traditional herbalism and this teacher was supposed to be reputable. This coincided with one of the biggest mistakes in my life - I turned down an interview with the National Park Service for a guide job at Mesa Verde in Colorado because I had enrolled in this apprenticeship program. Made the feelings of frustration and being cheated even worse.

Hospice home-health aid/nursing assistant: My beloved grandmother died and was in hospice care at home. I was so impressed by the hospice workers, plus my interest in healing, that I tried to find a meaningful direction in that regard. I enrolled in the local nurses aid training program and did well throughout. I got a job in the facility where the training was done (nursing home) in the dementia wing. I planned to log some hours there and then go on to the home health-aid program. One of the things that drew me to working with the elderly is listening to them and treating them humanely. I say this because too many nursing facilities are horrible. I discovered two problems in my new job: a) I was rushed around so much that I couldn't possibly treat anyone like a human (and most aids didn't!), and b) I had a bad reaction to something that caused my hands to welt up and itch like crazy for a few days. I took those days off and then quit.

Acupuncture: So, with my ideas and skills in tow, I thought I had made up my mind to pursue a career in acupuncture with a focus on pain management. I was excited because one of the best schools in the country was in my State! I was working on my prereqs for a Master's program when life happened instead - let's just say that it was the worst year in my life. I ended up moving 3000 miles away to start over again. I got married and settled here. Since I was now irreversibly thwarted from that path, I've felt lost.

Motherhood: I also felt strongly that I was meant to be a mother. I always thought that meant that I would have a baby; however, God gave me two beautiful, older step-children. Weird how that works. Sometimes the sadness of letting go that dream of having my own baby is overwhelming, but it gets easier with time. Realistically, I could not raise a baby now that my EDS is a challenge. There is a young woman I know who just got pregnant and is so thrilled! She just glows. It makes me wish for the ignorance of my 20s, but that would have changed the course of my life and who knows what shape I'd be in now (plus I would not have met my husband - not acceptable!). Again, I have felt a bit lost since that dream is never going to manifest.

Teaching intrigues me and is what my grandfather has wanted me to do since I was young. I am scared that I will not be able to complete the training in a full classroom because I simply don't have the physical energy and cognitive strength I used to have in my 20s. I like the challenge of learning and I've been told I have a gift for teaching. Some alternatives to full classrooms are tutoring and ESL classes. If I got my Master's, I could teach at the Community College level as well. First, I have to take the GRE's and I am terrified! I cruised through the english part of it in the study guides I bought. Then I got to the math section and couldn't get through the first page!!! I think I have to take a math class before I can take the GREs. :( Did I ever mention how much I hate math and that it's always been hard for me? When we get in a better financial place, I'll sign up for a dreaded class. I don't think the GRE study classes, like Kaplan, offer math classes/tutoring so I'm looking into the community colleges around here. Yikes!

And then there is the healing ministry I feel called to. I want to sit with people who are dying and are alone. I want to listen to those who are challenged by life. I want to help others while helping myself. I also enjoy being an advocate for EDS. Our local area doesn't have a support group and I think it's possible to organize one.

My great concern is that I will let my energy get sucked away by those in need and I will overextend myself. I have a full-time job with a commute that take most of my energy. I sleep most of the weekend to get enough energy for the next week. Where is the balance?

Have I missed the boat?

What is your purpose in life? If you weren't born knowing it, how did you figure it out?

Sunday, March 28, 2010

"One that won't go away"

I meant to write an update to my Resolution and Lent post but wasn't in the mood until now. 

1) Pain management: I've been taking a short-acting pain med for 4 years now. It lasts ~3 hours and then the pain and mental dysfunction/cloud comes back. So, I had a light-bulb moment - my pain med is not making it through the night so I wake up in pain (duh!). I guess taking control of my pain since January has led to brilliant deductions I never thought of before. Feeling stupid? Yes.

2) Morning wake-up time: Well, this change is not going as planned (sorry Jesus). Some of you, including hubby, would say 'of course not', but I was determined. So, I did well for 2 days of the first week then I got sick for three days. Early waking worked for another 2 days and then I overslept two days. I tried for another week or thereabouts and then gave up. Not a good thing to choose for Lent, I guess, but I thought such a motivator would kick my butt into gear. Turns out my butt needs the gear it is already in. 

Early into the second week after getting sick, I had an acute care appt with my MD due to that bug. While she was seeing me for that issue, we talked about my pain problems during the night. I've tried everything short of waking up every 3 hours to take pills, which would be ridiculous considering the level of fatigue I have. So she said we need to try a longer acting medication. I was not happy about the options, which are both in the controlled-substances category. Better way of saying it is that I was scared of the options. 

I'm not afraid of the med, I'm afraid of the name. Morphine. It seems unreal to need something that we are taught as very potent and used in major cases of pain. Granted, I am on the lowest dose, so there is a reality to the situation that I am not severely ill. But still... I am more likely to call my new medication by its brand name than the generic we are so familiar with. It doesn't seem to be a stigma issue I am dealing with either. I know... I think it also has to do with the looks people give me when I explain to them I have a chronic painful disorder (if I am wearing braces or am limping, etc). I don't like the sympathy and immediate concern they feel they have to express, though I am guilty of doing the same to others who might struggle with other stuff. I am not ungrateful, I don't like the attention. Add to that the sound of morphine and the concern doubles. It is hard to explain, I am finding. So, I suppose there is an internal and external level of anxiety about the new drug. I don't want the attention that comes with other people's perceptions of what I must be going through if I am on morphine, and it is hard for me to acknowledge that I cannot control my body/pain. It comes down to quality of life, ultimately. 

When I was initially diagnosed in 2006, my doctor at the time discussed the different types of pain medications with me. I was anxious about opiate meds so I accepted tramadol, a short-acting med that helped tremendously in combination with OTC naprosen. The doc called tramadol a "baby"-narcotic with a similar action to the big guys. The naprosen helps with inflammation that the other meds don't cover. 

For pain, there is no huge difference with how I feel on this med vs the tramadol; I just don't have to take pills every 3 hour, which is very nice. At the follow up that I had, we discussed my pain status after 4 weeks on the ms contin. The new med lasts the 12 hours and helps bring the baseline pain down from a 5/6 to a 2/3. Add tramadol (and aleve if needed) to that and I have a 0.

The only problem that doesn't go away with the ms contin is the brain fog, which typically manifest as confusion, spaciness, forgetfulness, and word loss. Tramadol makes me feel like my old self before the constant pain. I can't explain how horrible it is to feel like you used to be moderately intelligent and a good, reliable employee, and now you are incompetent, unreliable and mentally clumsy. So, my doc asked me several questions and suggested that I take the tramadol when I feel this fog come on; that it is that 2-3 level of pain that is still distracting my body/mind from working optimally. It really does help to combine the drugs as she suggested. The only concern she has is the level of seratonin inhibitors in my system between the cymbalta and the tramadol - that I should back off tramadol as much as possible, which is the benefit of adding the ms contin. I went from 6-8 tramadol a day down to ~3, as needed. 

So, I am doing well on my New Year's resolution to manage my pain properly, even though I might be having adjustment issues. Next year, I'll try cutting back on chocolate or some other temptation for Lent. Though difficult, I will have a much easier time managing my chocolate intake than my sleeping schedule (insert big smiley face here). You lose some, you win some.