Thursday, June 09, 2011

tuning in

{fyi, this may be a doozy of a post with TMI offered up as a side dish, just saying}

This may appear to come out of left field but it has been on my mind for years now. How well do you know yourself and your body? I mean really know what is normal for you and your physical self? Growing up, I did a lot of taking care of myself. My mother had Lupus and was more often than not, sick. From a very young age I learned how to fix myself breakfast, get dressed, amuse myself and take care of her as well. I knew when she needed to take her meds and which needed to be taken with food. I knew which tea helped her and when she needed something more substantial. I also learned, as I grew up that doctors don't know everything, nor should they. They are, after all, only human.

At the time of my mother's diagnosis (on the heels of far too much trauma one family should ever encounter) not much was known of her disease. She was in fact, given a death sentence and a time-line of two more years. My childhood was defined by the fact that I never knew if my mother would be "awake" the next day and I grew very attached and insisted on falling asleep in her room, even as a teenager. At least this way, I would know when she came to bed and yelped at me to go to my own room. I know it is not normal to define your sleeping patterns by waking up every few hours or so to make sure your loved one is still breathing. I still do this. Not healthy, I know but it's what keeps me from a bigger panic (poor mr. a-go-go).

Back to this whole business of knowing yourself and doctors. My mother shrugged herself into her disease and let it settle over her like a well-worn bathrobe all quilted and pilled and pink. It became a crutch of sorts and I knew it terrified her and it makes me angry on many levels. Angry that she allowed it to control her, angry at the medical world for not encouraging her in any way and angry at those outside of the Lupus world to understand the physical pain and limitations the disease caused.

The year before she died, I spent a lot of time with my mother and her disease. I mean this in a positive manner. I bought and read as many books as I could. I urged her to see a therapist (she refused) and I worked on her to communicate how she felt, inside and out to me, my siblings and her doctors. Being a person of no income who relied heavily on the state for her care she was one of those who slipped between the cracks and felt that she had no right to argue for better care. I began to argue for her and made demands and questioned when doctors failed to follow through with their own directives.

When she was hospitalized, it was both awful and a relief. A relief because we thought she would get some rest and real care and awful because that is not at all what happened. Cutting to the chase, her death was unexpected and we had enough documentation to pursue malpractice (we didn't, many reasons, a good many and with regrets as is normal). Through it all I learned to make sure to listen to my own body and self. Not to undermine what a medical professional could do but to tune in and listen to my own body.

Tuning in, I have discovered many things. Each small discovery was shared with a care provider and each one was met with a shrug and a "there is no connection" comment. I refuse to accept that. I take notes. I know that many things happen coincidentally. Sure. But I also know that even though there is a measure of normal out there, I don't think we can all fit within that measure. Take my weight. I've gained a lot of weight these past ten years. Too much to be happy and comfortable in myself even. It's not the number that freaks me out, though it is kinda shocking but more the placement of the fat on my person, attractive, no? That said, to fit within the BMI I need to lose about 40 pounds or so if not, I remain labeled as MORBIDLY OBESE. This is shocking to me and frustrating. I am aware I am fat though I prefer fattish and I am aware I need more activity to lose weight but morbidly, really? I've also been told I have Hashimoto's Syndrome and that being hypothyroid makes it difficult to lose weight which I have encountered. And...before you lecture me or point out that the previous post was all about cake batter fudge, know that while I do enjoy baking and cookies and sweets I don't eat nearly as much as I make (the mister is like a vacuum in that arena). Thank goodness for a household of people. I also do not spend my day snacking on bread and soda or even juice for that matter. I drink coffee with milk, no sugar and rock the salads and low carbs and healthy fats and drink so much water I could burst. Yay for nuts!

So I am told all this by my docs who want to put me on the normal range of every spectrum they have. Or they measure by this spectrum. And I think how is it possible to fit me, a square peg into such a tiny round hole? There is my DES and the nasal polyps, the wonkily-crooked jaw and cranial deformation (I have that on paper even)! There is the infertility and the thyroid and the menopause that appeared in my thirties and the allergies that manifest in the worst asthma attacks I have ever encountered. All of these fit together in some way, not that they are connected but they are all a part of my person, right? So I take notes and am aware of how MY body feels when I feel right and good and healthy. Seriously, I take notes.

I know that my normal body temperature is 97.4 and that if I ride my bike or hike when there is a high pollen count I will be extraordinairely sleepy, sluggish and lethargic the next day and if I don't drink hot tea and suck on my way too expensive inhaler and allow myself to sleep I will end up in urgent care and on an awful dose of prednisone just so I can breathe and if I am taking the prednisone, I know I cannot go out in public or be around people because the germs will flock to me, move in and squat until I am in urgent care again and the cycle begins anew.

I also knew to question my thyroid issues. Before I began swallowing those little yellow pills I felt fine for myself. I showed no symptoms of thyroid other than weight gain but that could be due to my fear of pollen and going outside. I had blood work done to determine my infertility (without considering the DES) and was immediately on the carousel of determining the dose I needed. About six weeks after I began those damn pills, I developed symptoms. Symptoms I was told were coincidental and merely side-effects of the meds. Symptoms that actually mimicked all those symptoms I never had before. There was another weight gain of 20 pounds!!!! My asthma problems quadrupled, I lost my period, my hair began falling out, my skin became dry and I would hit a crushing fatigue in the middle of each day. I developed hot flashes and mood swings (swingier than normal) and felt miserable. And so I asked, could my thyroid levels maybe be normal for me? And I was told nope. And eventually not only did my period run away, I was awarded top prize in premature menopause.

And still I wrote notes and questioned and tuned in. But in all my research there has been a great show of fear in trusting yourself and not trusting doctors. I don't think doctors are bad, I think they can only hold so much info and have to work within the realms of your insurance plan. I asked my doctor if I could see a nutritionist because of the weight gain and was told I was fine that I looked normal. I asked for a mammogram because of the DES and was told I was too young. It took forever to get an HSG to determine the damage to my girlie bits and then that doctor offered up a solution of egg harvesting, invitro and all that even though I exhibited a full on tiny womb a la DES which usually results in miscarriage. When she told me I was menopausal she offered me estrogen even though as a DES gal, estrogen could be the death of me.

But I was a dutiful patient and soldiered on taking my tiny pills, sucking on this inhaler and that inhaler and then came the road trip. Before the trip, I worked really hard on making sure I could get all the meds I needed and as many as I could. I begged and pleaded for six months worth of refills and then shelled out major moolah after our insurance ran out. I became fearful of what would happen to me and my asthma once I ran out of inhalers and so I researched and tuned in some more. I made changes in my diet, small baby steps nut they seemed to help and then I took the plunge and dropped my controller. I felt no difference and so I took the plunge and dropped my thyroid. I still have two months worth of pills but when those run out, they run out so why not now?

Within four weeks I began to feel better. The texture of my skin has prettied up and my hair, while still partial to fleeing my scalp, has shined up and remained more on the noggin than not. The crushing fatigue went AWOL as well as my hot flashes and the kicker of kickers? My period has made a return. A real return, fully committed complete with the tell-tale sore throat I would get ten days before. And THAT actually pisses me off because what if, WHAT IF,  the damned thyroid meds pushed my body more into infertility than not? What if my chance of pregnancy andd mama-hood was there, right when we were trying but took a vacation once the meds moved in? And I know all of this could be coincidence but what if? What if? What if?**

While all of this was and has been happening, I have been hiding out from the pollen monsters. My sniffer had gone on holiday and the wheeze has returned with a vengeance and I only have one magic inhaler left so I have been researching and taking more notes. In response to the sniffer not working, I dropped my nightly allergy pill realizing that it helped more with hay fever than chestiness. Along with it, I have worked extra hard at remembering to take my vitamins and sure enough, three days later the sniffer has kicked in and my morning cup of coffee is much more exciting now that I can smell it. So tuning in and writing it down even and being aware has helped me, at least I think it has.

And now I need to battle out the allergy problem because the vicious circle of my weight and inactivity are all tied in to being able to breathe. And I like being able to breathe only a leetle bit more than I like fitting into a smaller sized jean. I'm still a work in progress and am discovering more every day.

**seriously, PISSED.


  1. You have every reason to be pissed about this situation! I agree that doctors are often trying to help, but I sometimes wonder if people rely too heavily on pills instead of listening to their hearts. It's amazing that you listen so carefully to your body.

    Do you think it would be safe for you to have children now? Or are there other complications?

    I have to admit to being wary of veterinarians based on previous pet hospital situations. I feel bad second guessing any doctor, but sometimes knowing your pet/person can make a world of difference!

  2. Thank you for your post and its honesty. I don't think a lot of people realize that doctors are not gods who know everything. I have had doctors who were complete incompetants and some who (like my doctor now) are wonderful. He listens to me if I say I have something wrong and he also councils well if there isn't but I still don't feel right.

    My mother too died from lack of decent medical care, she didn't go to the doctor often enough because we too didn't have money but they missed her condition. Instead of being bitter I too do as you do and keep a good eye on myself. I have a very one of a kind medical condition thats been documented plenty and yet also told well you're unique now go home we can't help you by the medical establishment. Self advocacy when it comes to your health is paramount. Especially with what meds do and do not accomplish when you are told to "just keep taking them". I actually lucked out and the blood pressure meds I was given by doc actually made my condition a lot better. That isn't always the case. I've also had other doctors try to give me stuff I knew I absolutely shouldn't (and didn't ) take. I applaud your efforts at taking the best care of yourself including knowing yourself enough to do whats right for you, even if it flies in the face of what a doctor says is "fact".

  3. Holy moly. Different diseases/afflictions but much of this sounds very familiar. It's starting to look like surgery may be out and meds may be my only option and - I'm seriously thinking of passing on them and enjoying the life I have as I know it, because sometimes, the treatment is worse than the disease.

  4. Darlingest,
    This is sincerely your BEST-written, most thought-out post you have ever written on this subject. I love you, and am so proud of you and your note-taking and tuning-in. I LOVE that you are making you weller.
    And again, while I KNOW I KNOW I KNOW it's neverever-no-way-not-ever going to be a consolation, I personally cling on to the idea that between the DES damage at a chromosomal level and your family's medical history any eggs that mightmaybe have been harvested would likely have just broken your beautiful heart.
    Remember, traveling in my TARDIS, I leave world leaders alone, and make waffles for 5 year-old you -- or better yet switch your mom's pregnancy meds for vitamin shots.

  5. thank you for listening to your body and taking copious notes!!!

    we are battling this odd cough with 3 kids in the neighborhood and the dr immediately prescribed allergy meds for 3 and 4 year makes me want to scream.....why mask the problem....we want to know what it is caused by first!

    I wonder if those nasal bandaid strip things.....that help me breathe at night when traveling....might be useful in the exercise dept for you and me....i am trying them on my hike monday!

    I know it all costs money, but what about accupuncture? chinese medicine? massage? reflexology? i think sometimes the cure is just finding the threshold best fit for you....and I am no dr....nor a skinny minny, but i think the worst I have felt is from drugs/iv/medications and their after effects.

    keep on listening!!! my grandfather swore by the belly breathing of yoga and he was active and healthy!

  6. ALWAYS trust your gut! (I'm so glad your period came back....seriously!)

  7. Greeblygreebly12:47 PM

    Been there, or at least in the neighborhood of there. Spent 14 years misdiagnosed with an ear problem that was really a nuerological disorder because one nuerologist who saw me twice and spent less than 15 minutes with me each time decreed that was what I had. 14 years of every doctor I saw taking his word as gospel. The only reason I was ever properly diagnosed was because I had an MRI for an unrelated problem that found the lesions in my brain. Once diagnosed with MS the new nuero put the fear of sudden blindness and/or inability to walk into us and got me onto a medicine whose side effects were worse than the disease. Didn't want to take me off of if even though it is a medicine that is known to work in 30% of cases. And in me it primarily made me very ill several days a week. Even then it took me two years and a new nuerologist before I was brave enough to get off the medicine that didn't seem to do anything for me aside from making me very ill. Sorry to be long winded but good for you for listening to your body and doing what you need to do to be well. It takes a lot of guts to do that. Good luck on your continued journey to better health!

  8. I am so opposed to medicines. I know they can do more harm than good, and such seems to be your case. I have a friend who takes 14 meds, and I know they create more problems than they are solving as she is now nearing kidney failure.

  9. I'm sorry, I'm just a random blogger who enjoys your recipes, etc., but I am so sorry to hear about your mother, and all the hardship you've faced.

    I don't know if you believe in this or not, but acupuncture, I think, could be really, really helpful for you. Acupuncture works with the body as a whole, interacting etc., rather than western medicine which focuses on the "local" if this makes sense. (it sounds a bit like what you were discussing in your post)

    at the very least, I think it could really help with your asthma and hay fever. I used to have hay fever that kept me locked in doors all spring (and even so, i would be feeling dead/sneezy/swollen/couldn't breath/generally miserable). It was literally like 24 hrs a day of bad allergies. I tried out loads of pills, but they did nothing but make me more tired. I just started acupuncture this spring (all it takes is a couple visits) and my allergies are actually gone.
    Also, many health care plans cover acupuncture.

    I hope things start to turn around from you, and I wish you all the best.

  10. I don't know why I'm surprised when the most cheerful, liveliest folk share harrowing tales. N. and I are always in support of getting off the meds if one possibly can. Seems like docs most human weakness is trust in meds and, when they don't work, more meds. But that's great news about the progress you're making, I salute you. Hope to see you and Mr. A-G-G before long...

  11. Sweet girl...I feel we have so much in common, NOT everything, but lots. I will write to you personally, if that's okay? Don't ever, EVER stop listening, or loving, or being you. You don't fit in (yea!!!!) (neither do all the best people!!!!) and you are loved.