adoption, TR transracial

Racism, Every single day

http://sfist.com/2013/07/12/ktvu_names_asiana_pilots_ho_lee_fuk.php

Racial slurs…
Despicable and so disrespectful. There really isn’t a day that goes by that I can’t find an example of a racial slur. I struggle with- Do I point it out or tell my girls (8 and 9 AA girls) EVERY time I come across one OR do I pick and choose what I think they can handle- which is kind of silly to think I can insulate them forever (my instinctive protective reaction as their white adoptive mom) I imagine if i was their black mom I wouldn’t be as protective as I would be instructive- I think I’d really know- having lived it- that i need to use these examples to educate while they are young. Having raised some ither kids- I learned that my parenting style was effective when it came to role modeling, sharing values as a family, educating my kids on how to think- and at times what to think- this period ends at 11. After that there are SO many other influences to compete with!

Though Ive learned a NEW reaction instead from working with THIS amazing group of ‘TR’ – transracial – families. I NEED to SHOW my girls how to manage it. SO hard when Ive lived with white privilege. At times, I walk away and think- if my child made this transaction or had this encounter with another person ALONE- would it be different for them because of their race.
Yes. Because my eyes are wide open as I pay attention to all the people around me and I watch that we are treated equally, but we often are not.

I don’t love to be confrontational but I am when I find it necessary. It’s just in the matters of race- I find that I’d be fighting about one instance or another- every SINGLE day. If you experience racism, It must be either utterly exhausting – Do I stand up and make an issue about this or not? OR mind-numbing – where you just choose to ignore most of the hate and ignorance that is around you. It’s living halfway- always being on the alert, ready to be disrespected. Because you are- often, being treated differently. I suppose you choose your battles- what’s worth fighting for? Everyday?

When can you truly RELAX? (I imagine that’s why it’s still hard to break into the clique at church:) The superhuman, strong bonds of the black women at a church I’ve been attending for 9 years. Its a cultural thing to be relaxed in numbers. And their trust needs to be earned.
But I’m persistent, in a nice way, and I’m tougher than my 8 and 9 year old. I suppose I’m going to have to feel out how THEY FEEL- what to take a stand on and what to leave alone. But doesn’t that take guidance from me- and I’d be so subjective- but I’m still their WHITE mom.

Everything in this world will be different for me than it will be for them.
I might take issue with something that a black mother might not or vice versa. In fact- it might be pretty clear in their racial group – how to handle various situations. THOSE nuances of parenting a black girl are why I need so much help:)
I often wonder, if I was a black mother- would I be expecting my girls to handle things in a different way than I do as a white mother?

So for instance, I assume that if they take a racial situation to the principal- I would expect them to be heard and some disciplinary action taken.
Without my knowledge or presence, however, I think they’d get patted on the head and sent back to the classroom. As their white mom- who is accustomed to being heard and respected, I would be upset by the latter and I would call out the principal about how this was handled.
Now does a black mother handle it differently? That’s only ONE of the LENS I often use.
Would a black mother expect to make waves or would she want to avoid or ‘ignore’ such situations?

It’s SUCH a hard way to live- feeling disrespected so often, in so many blatant and subtle ways. And until the adoptions if my two youngest girls, Ive walked by it for most of my life, knowing of it but never truly FEELING it. It’s shameful for me now as I believe because I did nothing to affect ANY change, I was a part of the problem. And what a life of wasted time, that I didn’t use my time to raise up amongst us, those that were not on equal footing. I have no right to be here and live in a world where there are such vast inequities. Unless Im here to help create more balance. So I have a debt to pay, work to do- which has nothing to do with the goals, dreams and plans I have for my kids.

It’s the most painful experience – to feel discrimination through my kids. Several times- as my child has grown to not hold my hand or be constantly by my side- I’ve witnessed derogatory behavior from a shop owner, passerby, and salespeople. I’ve always called them out on it. Hoping that just drawing their attention to their poor behavior would correct things- but I know Im not winning the battle over things like this.
I’m really just teaching my kids to recognize when and if they are being treated differently when they should be treated equally. Would they call out the shop owner? If they have brave, strong personalities- they might…

I’m often shocked about how ignorant I was to the racial tensions that exist in our society. The sheer weight of it overwhelms me.
I now see racism daily. And for those who experience it, I imagine they’d scoff at my new awareness- as they know of racism every hour and every encounter of their day.

Since I believe I really can only command my kids full attention for a couple more years – I think we’ve got to talk about what I see, what they see and hear- about racism- several times a week!

I can hear my white privileged friends (and I DO know why the term is so offensive to them…another post!)
complain and suggest that all this attention to racism may place a chip on my young children’s shoulders before they may have experienced it on their own. Perhaps there won’t be these issues in a few years, they don’t see it do much anymore. Haven’t they always said that they don’t see color?

Doesn’t leave too much time for having an easygoing childhood, but helping my girls develop their instincts about people, learn to be aware of their surroundings, what actions can be taken in various situations- it’s NOT TOO EARLY to learn. At 12,13- they will be distracted- parents have LESS impact just due to kids and their stages of development. They also begin to need and use other guides, friends- and their parents, coaches and teachers and they consult them as well, even unconsciously. Then, our parental opinions are weighed along with these other influences. We have competition!

We think we will be around for helping them handle everything until they move out- and we CAN be ‘around’. But the influence we hope to have on them for a lifetime is really planted and nurtured in that first decade. We love and build trust, provide experiences and education- and THEN we get to bond through our shared beliefs and values- which is easy in the absence of other beliefs and value systems!

I suggest we take the time we expect to be actively parenting – 20 years or so and cut it in half. We get the first half to get it all in there- our values, our beliefs, how to love and respect and help and work – they are watching us SO closely in those few early years.

What I take a stand on, the racism I chose to see or ignore matters so much. And that Ive taught them to handle themselves despite the inequalities that glare at me everyday- this will be my greatest parenting challenge.

All this thought and worry and working outside of my ‘white girl privileged’ box- wont even show up in my children until the next decade or two. If they have respect for themselves and for one another – I think I will have worked this out right!

Standard
chronic pelvic pain, interstitial cystitis, vulvodynia

Vaginal WHAT?? Just another monologue…

Very PERSONAL post, yet everyone knows a VAGINA, so perhaps it’s of interest to more people than I realize?

So- today I got a question about vaginal Valium- a new ‘to me’ form of therapy. And though I was effusive in my PERSONAL reply, I hesitated sharing my news with other medical support groups etc. and I had to think why this was so.
This stuff is PRIVATE. The VAGINA stuff. But should it be?
Truly, my response to this therapy was SO successful I should shout it from the rooftops! Of course, my husband knows, and I think my grown children have heard enough of my ‘pelvic issues’- a term I created just for them. And the youngest ones tell their school chums that their mom rests afterschool because her ‘back’ is hurting. Yet, I have GIRLS – and when and in what settings- are we finally going to be able to talk about our vaginas? Vagina, vagina, vagina…
Especially – as I would never want another woman to share this painful experience, if it could have been helped or prevented by more knowledge and information about Chronic Pelvic Pain, Interstitial Cystitis and/or Vulvodynia.
This will be the place I refer other women to. Vaginas.
In response to another woman’s questions about what medication I have found to be helpful, how I learned of it, how I got a doctor to understand it- because it is NEW, and often poorly understood…
I take •mg lorazepam/•mg baclofen and 2% Lidocaine AND can take 2x/day, though I hardly need to – IN A SUPPOSITORY. IN MY VAGINA.
I only take it at night, when I also take Elavil- so it’s hard to tell what makes me sleepy. If I’m in pain, it’s rarely enough to make me sleepy or keep me asleep more than 2-3 hours anyways. BUT I do feel more RELAXED- DOWN THERE, where it counts! It’s exactly what I thought it might feel like. To have meds relax you in a specific area.
When due to trauma, an injury, a medical condition- you just CAN’T do it yourself.
And yet- people say ‘RELAX…’ as if I could, because I’ve had chronic pain for so long I don’t remember what ‘relaxed’ feels like.
It’s SO frustrating to get most people to understand. These people DO SLEEP most nights, EAT and DRINK as they like, don’t have CHRONIC issues like IC, VV, etc. which means they DON’T have to be ‘chronically’ AWARE- take meds, make doc appts, etc., they HAVE sex for the closeness and stress relief, and they can have an alcoholic bev ANYTIME -just to relax!
SO THEY CAN’T IMAGINE the state we are in, looking for meds to put up our vaginas! Relaxing is so easy for them, but not for us. And from chronic sleep deprivation, pain and desperation – it seems as if we’d try ANYTHING.
If only they knew how much time and research goes into finding solutions for ourselves. (I’m so PROUD of us.)
To report- The last 2 weeks have been amazing. TOTALLY worth my perseverance and I appreciate that this opportunity to write about it reminds me of that:)
THIS POST IS NOT GIVING MEDICAL ADVICE. The meds/dosages could very well be outdated and inappropriate FOR YOU. The intention of this post is to help a patient by sharing experiences, offering encouragement- not suggesting meds, dosages or treatment. Everyone is different. With love- Figure it out for yourself!
I asked my compounding pharmacist about the dosage just yesterday as he called to check in with me. We tried the ‘standard’ Valium suppositories with Baclofen at a •mg, then •mg dose and then we tried Valium orally INSTEAD. We learned I don’t respond to Valium either way. But using the lorazepam has made ALL THE DIFFERENCE. It makes sense- really.
I KNOW the risks of addiction/dependency that can happen with a benzo… medication so I had my concerns as well. He told me at THIS dosage of the lorazepam, I should not have any concerns. I even asked him if it was meant to take for a short period of time – like 2 weeks or a month- like my PT wanted things to loosen up to do more therapy and then THAT WAS IT? And back to pelvic floor pain:(
But he reassured me, I can take it long term- it’s a med to be watched like any other BUT this med and it’s delivery has helped me more than any other – Including some opiate medications I have tried.
It’s working so well for me that I’d be SO sad if I had only these weeks to enjoy the benefit of this form and type of medicine. I take no other meds in this category, and my dosage of antidepressant/ Elavil is very low at ••mg. and acting as an agent with other pain medicines. I can take a long acting opiod that I have a script for but the VAGINAL suppositories help me more.
A few days ago, I realized that because I had already been on the suppositories for three days, I had not felt the pain from clenched pelvic floor/ airplane travel, hours in the car…and when I arrived and settled in- I had SEX! – the intercourse kind:)
If anyone were to ask, I’d say we have a healthy sex life- we’ve worked so hard to do so- BUT we would go long stretches without intercourse because it was not comfortable for me:(
My husband has always been great and creative but I missed that part of our life and was really sad at how painful it had become again – 6 months ago. So we stopped, and he was otherwise satisfied- he did not realize how long it had been for ME. Since I was the one who had kind of ‘dropped out’ I didn’t want to also whine about it- But I was counting the weeks that went by that I still felt it would hurt and it was upsetting.
And so to have SEX, was a huge, stress-relieving, intimate thing!
How does one properly EXPLAIN the need for a sex life to one’s doctor or pharmacist?
Having sex again is so healthy! I still have bladder pain- the chronic, irritated kind and have had only one food-related, very painful flare while on vacation. I have noticed it’s much easier to figure out what works for me and what doesn’t- while on vacay as I have no other distractions- so I recommend THAT for everyone!
I never used lorazepam before and started at •mg- which does NOT sound like a huge dose, according to both of the doctors I had asked.
I think that my uro suggested I try the oral Valium (that a new doc had prescribed a month’s worth as it was new to me) she said ‘vaginally’, to see if it would help before switching to suppositories- SO many of her patients had Valium work for them. This was a ••mg oral Valium. She said there’s no harm in trying this med vaginally, what I would take orally. Unfortunately, after a few months of trial, we determined it was the Valium that didn’t work- but the delivery method- vaginally in suppository form made SO much sense that I called my gyne and this compounding pharmacist and asked them to work out SOMETHING ELSE to try.
I mentioned the articles I had shown them about vaginal valium. And I reiterated how we had tried valium and various dosages of it and it didn’t work. I also asked my pharmacist to take his time and ask around professionally, perhaps there was another doc who had encountered this before. Of course there was:):)
I liked the delivery as it wasn’t something that I took through my whole system. Another option besides Valium is Lorazepam- it’s in the same family- but I CAN’T believe the difference it makes for me. And yes- it helps with relaxation and sleep for me. It feels like it eventually gets absorbed overnite and has given the rest of my system no trouble (mine are compounded in a vegetable oil base and are absorbed well.)
Its important to be cautious- I don’t know what other meds someone else may be taking and their pharmacist should be/may be concerned with an interaction? Thats why you need to talk with your pharmacist. The Baclofen in mine is considered a muscle relaxant and I DO appreciate that being a part of the suppository as well. But maybe there’s a muscle relaxant that works better for you.
Taking Flexeril orally at night just made my whole body feel loopy and then constipated. So I never realized that there WAS another muscle relaxant I could take in a different way.
I don’t find Lidocaine to have all the pain-relieving properties that so many other people get from it- and my uro/gyne said not to worry. It’s in SO many things of mine but doesn’t come close to managing my pain relief. It’s in a lido cream I can put on my vulva before physical therapy, it’s in my instillations that I do because I’m trying to have the heparin do its job on my bladder lining, the lidocaine offers some cooling but NOT pain relief. But for some people lidocaine is amazing.
Keep in mind, this is my third go at this- and I’ve talked to seven pharmacists- only a few compounded though, and I asked them what they knew or had heard about this stuff. When they didn’t know much- I moved on. The pharmacist I’m working with these last 2 months- I had asked him if he’d heard of treatment (vaginally) like this for women.
I told him- ‘Imagine if a woman broke her pelvis and she needed PT for many months as things were healing…’ INTERNAL PT can be excruciatingly painful, but very necessary and I, the patient knows this, but has continued to endure PT for two months without any pain relief.
I then described that I did not work the following day, spent much of it in an ice bath or with ice packs to reduce the swelling, did not sleep well, etc. I mentioned the 4 docs I was continually under the care of- the uro/gyne, the gyne, the pain doc and my primary.
I ALWAYS mention the 2 big organizations that supply the world with the best, most current information available- the ICA http://www.ichelp.org and the ICN http://www.ic-network.com and ASK the pharmacist to take a look. I also asked him if he COULD ASK AROUND with other pharmacists about what they use, etc. and call me back in a few days/week.
Finally- we are in SYNC!!! and I talked to him yesterday- he was SO pleased I had a good result.
Perhaps YOU could appreciate how good- travel, sex and sleep? This is the best I’ve been in 6 months. And YOU probably appreciate this more than any of my healthcare providers do.
I’ve since learned that there are people who take meds rectally – very quick absorption of meds (and I’m talking about doc’s recommendations, not illegal drug use), it’s funny what I never knew about – such a prude- until I got sick. I would have never imagined meds in my vagina.
And given my pelvic floor issues, that I found the therapist that I had worked with 10 years ago- we had a great easy relationship- I imagined it would be easy to get back on track, but it wasn’t. We were both stunned, sad and frustrated that in a similar amount of time, I was not making as much progress as we had hoped.
I NEEDED SOME MEDICAL INTERVENTION- and these suppositories will be KEY for me in continuing PT. As painful as it was, I kept continuing to the point of being exhausted. I was so glad to go on vacay and get a break from PT.
I did not know that the SUPPOSITORIES I had just begun were going to change the quality of life on this trip:)
I’ve learned since- while I’m on vacay, my PT has moved, I’ve had some spine issues, I found a new therapist (she and I also worked together 10 years ago- she is a 2 hour drive/ride for me, but in these 10 years she’s now become an expert:) – that all the meditation, prayer, exercise, diet, etc. is no substitute for medical intervention.
It will be worth getting my PT’s opinion on why I’m still stuck with a few things- and because of the suppositories, I won’t need to endure so much pain from the PT and the travel.
So I’m again hopeful- and that’s the biggest part of getting well. You have to imagine yourself already there.
I sure wish I could be more helpful. Perhaps that’s why I shared so much with you. Hoping that my experiences can be helpful? I think the conditions and the therapies/treatments/meds that relate to these PELVIC disorders are still new and there aren’t many docs/pharmacists who are well-versed on the WHOLE PICTURE. It’s up to us- most often- to put answers together for ourselves. Frustrating it is then to THINK WE HAVE the answers but then have to tip toe into the docs/the pharmacist and gently suggest/inform/cajole them into agreeing with our thinking about our OWN bodies!
Eventually, I have guided the treatment to be the way it works best for me and I know I won’t even talk with a doc who doesn’t EXPLORE options.
There are too few gurus around that can dx any of us completely- it took me a long time to figure out that what Ive learned about IC and VV is more than most docs know- as so few specialize or can afford to in this and I can can spend all-day, all winter to figure myself out.
I certainly need their help and I value their opinion BUT I ONLY see docs now, who also value MINE:)
I would start out- make a bit of a diary about your responses to it (this will be your proof! If you need it) – then bug them if it doesn’t work after 10 days as that is more than adequate time and you don’t have time to waste.
Don’t wait until script runs out or until the next appt. CALL in and report if its NOT FULLY helping, and JUST A LITTLE BIT does not count.
You really don’t have time to waste- as I think it becomes more critical, more depressing, more quality of life, more life or death- the longer you struggle with this invisible illness- that involves your VAGINA. It’s SO important that you don’t live with this much longer.
When I knew this WAS WORKING, I cried on and off for 2 days- just from the relief of it! I also laughed spontaneously, sang out loud, hugged a little more, felt like – LIVING!
I realized that in all that time in PT trying to get my ‘floor’ to relax- that I didn’t KNOW what it FELT like- to have it be relaxed, it had been so traumatic, everything relating to it, it had forgotten how to be at ease, it was guarded and it had been SO LONG!!!
I’m hopeful too- that now that I know again- at night after it’s taken affect – I try to memorize the FEELING, so that I can someday- on my own – get to that relaxed, pain-free state again.
THIS is so critical, I think, for those of us getting therapy and/or having CHRONIC pain.
Regard this experiment with vaginal suppositories as one you expect to have an absolute solution to within a matter of a couple months! I feel SO much better- especially with two-three additional hours of sleep each night. I feel like a new person- not cured, but not exhausted, desperate and weary.
Hoping the same good health for you- I’m so happy that you’ve started- Hoping for perfect result for you:) and I’m hoping we ALL get more comfortable with these kinds of discussions. I hope my daughters or any of their young friends don’t experience issues with their pelvic health, but odds are- they will. And the focus is NOT YET on women’s healthcare- down there- below the waist- so it’ll be some time before this stuff becomes common knowledge, as it should.
WE need to do the work- the research, the trials, the appts, the conversations. And I propose we do a whole lot more talking about our vaginas. Your vagina. My vagina. Our vaginas.
-Jamie

Standard
interstitial cystitis, vulvodynia

Progress notes on Health for FB friends

Hi there- About MY HEALTH issues-
Interstitial Cystitis and Vulvodynia

In the last few weeks, I’ve had less pain- I’m feeling more hopeful and so I shared with a few people, hoping not to jinx it:)!
There is a beauty to FB and connecting with others who share a similar physical ailment. I know few people in person who have the same disease. But a couple of private FB groups, have saved my life. With nearly every treatment suggestion, came some hope or laughter. And it got me through and I will continue to learn through others in this way.
So I told the FB world – Hey, for the first time in 6 months, I’m in MUCH less pain today! HUGE! and my FB world understood:)

I’ve since been asked by many friends, many who may have similar diagnoses, to share what has helped me turn the corner.
And despite what could be the very private nature of this info, an overall FB status is just a shortcut to responding to everyone individually. And I’m so short on time:)

After 6 months of many tests and procedures, many off label trials, meds and treatments that often had only a 30% success rate, Im feeling more like Im healing.
Thanks for all the good wishes- very helpful with feeling better.
Hope you are all doing well and enjoying the weekend!
Don’t feel you need to read or care:) any further. It is probably TMI for the regular folks:)!
DO NOT READ ANY FURTHER UNLESS YOU DON’T MIND THE INTIMATE DETAILS.

My approach is usually pretty systematic, so that I know for sure what’s working but for the last 2 months, Ive concentrated ONLY on health and Ive consistently, routinely thrown EVERYTHING at it- so Im glad to be turning the corner.

Ive used Eastern and Western methods and anything that made sense to ME.
I researched heavily.
2 months ago, I either started or had already been addressing my pain and I am now continuing with these meds and methods. I hope to get a total remission of symptoms ( No, Im clearly NOT cured and there are still a whole bunch of issues to contend with until there is a cure.) but for me, pain was the most debilitating factor and any relief from that has me rethinking the possibilities my life may have again:)

The various things that really continue to help ME…and it’s a part-time job keeping consistent with all of them…

REST and DISTRACTION.
I was broken. After a huge period of denial, i finally gave in and rested properly. My previous remission was over. I was angry and upset until I accepted it.

I set myself up with the tools I needed for good SLEEP HYGIENE- so that I could sleep, even if for only a few minutes- whenever my body would let me.

I was in such pain, I could barely read. Not being much of a TV watcher, I tried it just to focus on something when in great pain in the middle of the night and you are waiting and praying for something to ease up!
I seriously caught up with pop culture! Whole seasons of excellent programming existed unbeknownst to me.
And I think we need DISTRACTION from our pain and at the time, I couldn’t handle too much movement. Still taking recommendations:)

DIET- My diet is impeccable- for me- GF, whole, often raw, organic, (little meat, if any), no dairy, lots of greens- but I have to watch greens so that Im not doing too many oxalates. I try to keep as alkaline as possible. I follow a weird combination of three diet lists- one for GF, and one each for IC (low acid) and VV (low oxalate). And Ive sorted out through Elimination diet early on which foods Im allergic to, so that reduced flares immediately.

SUPPORT- good to know others with similar issues. Good to have friends that still care, though you’ve dropped out.
YOGA my practice has changed, but my mat will still go with me everywhere.
FOAM-ROLLING- releasing fascia on my own. Recently heard that its easy for another person to roll me. Interesting? Can’t wait to try to see if it helps:)

MEDS-
SELF-INSTILLS – didn’t think I could- now I can in less than 8 minutes. Cathing is unnatural- our body doesn’t respond well at first. Took a ton of time to learn how to get those meds in me and save a two hour ride every other day to go to the specialist.
Not knocking those who do it in docs office- but it really is awesome for me to be able to do it at home.

ELAVIL- tiny dose, takes nerve pain doen a notch- now I have 12 extra pounds in 4 weeks- so there’s lots to be frustrated about- BUT I’ll still celebrate a nearly pain free day! The side effects are awful, it would be the first med I’d like to remove- when Im better down the line.

Vag suppositories- Valium is common but has NO effect on me. Tried and failed others. But this delivery method makes more sense to me than using all meds systemically. So this time it’s a combo lorazepam/baclofen and I finally know what it is to have a more relaxed pelvic floor.
I had been tense SO long I didn’t know what I was working towards. Now the med has helped me FEEL what relaxed is. After a few more weeks of PT- Ive gone 2x week for 14 weeks, I think I’ll be able to ‘find’ my relaxed state so much easier- and then my aim would be to stay loose and relaxed without the aid of the suppository at the end of the day.

I started a longer acting opiod for the first time in my life. I had always used a 4 hour. Which never helped me sleep long when having a painful flare- I’d often be up at night in pain- then waiting, hoping , praying for it subside within a couple hours so that I could get another hour of sleep.
This longer-acting opiod at a very low dosage had helped me sleep 6 hours in a row. I have not slept that long in at least 5 years. Imagine, little to no REM for that long. No wonder a body can’t heal!

PT- VERY painful during and often a full day afterwards, but helpful in the long run towards less overall pain and in keeping the rest of my body functional and flexible.
It was as if my PELVIS was BROKEN.
And we could work on the outside of my hips, but we also needed to work on the inside as well as with my pelvic floor. It’s a lot for most people to wrap their brain around. Not easy stuff. Professional, educated and experienced makes the difference in a therapist.
I consider PT to be one of the most important factors in my health now.

PT – at home exercises to relax pelvic floor- lots of tips and tricks I learned from my PT.

ICE/ HEAT. Get a heated mattress pad, water bottle or heating pad or blanket- or all of the above.
Get a circulating icepack machine. Best tool EVER.

No DRIVING for months- as this has always exacerbated my symptoms. I just really needed a break from driving until I was better. Missed the independence terribly but was SO grateful to the people who helped shop, drive kids, etc. I could not have gotten through this period of trying to heal, if I was still driving/riding. It still is a HUGE trigger for me.
Drove this week for ten minutes for the first time in several months! So far, so good. Baby steps!

ACUPUNCTURE- had really helped make the transfer off of the morphine that was necessary for a couple months. Now I use acu to keep the pain under control.
Dr. Chin has also taught me postures that help keep my spine supple and NOT as compressed as well as pressure points to massage along my kidney/bladder meridian.

MASSAGE. I’ve only gone 2x in 6 months. For SO long I was in such pain I couldn’t bear to be touched. But I learned that I wasn’t helping myself by avoiding touch- I was really just getting frozen.
Seeing a massage therapist- who knew my issues and avoided painful places- reminded me of parts that could FEEL GOOD. I had forgotten how good it felt to have my shoulders relaxed.
It’s like when a part if you is in pain, it becomes your primary focus- but it’s so important to not let it take over all your thoughts.

PRAYER- especially from other people, which surprised me. I’ve always been very spiritual but very private and I respected other people’s beliefs. But as I learned people were praying over me, I couldn’t help but feel cared about.

SPINAL epidural injection into my right-side nerve roots in my sacral/lumbar area. An MRI, a few months into treatment- showed that I had much compression of the nerves that feed my bladder. I’ve heard that this technique works best after 2nd shot – next week. And that I may never need such treatment like this again.
It makes sense to me that my back could be affectingly chronic pelvic pain. I have never had back pain however- so I had no reason to suspect it as a contributory factor. Until further testing.
Just goes to show that though you have IC or VV, you are not IMMUNE to other issues. (Schedule that mammogram, get the Pap.)

BOOKS
(Though it may not seem like IC is someone’s issue, I’ve found that many IC/bladder books are full of info about Chronic Pelvic Pain and so they are worth a read. Many also have exercises and diagrams for the pelvic floor, so very useful to people with a vulvodynia diagnosis. Just a thought.)

There are a few IC books, a list found on IC websites- which always have great concise and current information! As well as support forums, and publications specific to IC and pelvic pain.

The organizations are the ICN and the ICA
www. ic-network.com and http://www.ICA.org

The IC Survival Guide
Amy Stein has a Bladder book
The Better Bladder Book

Ending Female Pain- by Isa Herrera ( this one is mostly focused on pelvic pain of all kinds!)

The Miracle Detox- just a good read about nutrition, keeping alkaline – most ICers eat a very low acid diet as advised anyways, and because of other pelvic pain I watch that I don’t eat too much food high in oxalates. It’s a balance.

MEDITATION. Belleruth Naperstek is an amazing guide. There are some YouTube ones. Not really very good- the tone etc. but its a quick way to check ot out.
THE BEST are the ones on ITunes- she’s excellent. I started meditating 25 years ago through Shakti Gawaiian. It was nice to try it through someone new to me like Belleruth. I also do much meditating, positive self talk – on my own.

VITAMINS and SUPPLEMENTS-
It can be tricky to get all your nutrition from your food with these diets so I think some supplementation can be helpful. (But Vit B or a multivitamin is an automatic flare for someone with IC. I’m lacking in it. Going to try gentler methods of getting it into bloodstream.
Vit D- could not believe the increase in energy (and pain saps energy) after just a few weeks!
And because my Iron was so low- Ive started bc pills- Ive never used them for bc before- we are using them now so that I can abstain from at least 6 months of periods and keep my iron.
I was so low, any supplements would not be enough, according to my doc.
I also use quercitin without citrus!! (Bromelain, etc) am and pm.
Magnesium helps keep everything regular.

EXERCISE
It’s tough, because I have to regulate THAT too. I’ll no longer run or weight train like I did. The natural production of lactic acid messes with my bladder and its lack of lining- so the days after exercise are sleepless and very painful. I have to be careful to keep lactic acid very consistent and dilute in my system. Lots of water, but not overworking my bladder.
I’ve begun walking after this long term period of mostly bedrest.

JOYFUL HOBBIES
I sat to play piano pretty comfortably yesterday for the first time in months. In this last 6 months, I couldn’t sit well for more than 10 minutes, if that. Happy that I remember how to PLAY!:) – (some humor as Ive played since I was 5). But then Id never NOT played for so long, so I was kind of glad I hadn’t lost it!

BATHS- salt baths

COMMANDO- NO underwear possibly ever again- SO weird for me at first. But I was so pain sensitive that the seams hurt me.

TENS unit- an electrical neuromod device. You are not supposed to sleep with it. But it helps me GET to sleep on a continuos setting.
I also use it during the day at a modulating setting, to help retrain my brain from its old constant chronic pain loops.

HUMOR- sick humor, from other people with IC/ VV. You’ve got to laugh at the craziness of it or you’d lose your mind.

I’m trying hard to not leave anything out. Hoping this list can help somebody. I gathered SO many ideas from fellow sufferers and I just got to the point where I realized I NEEDED to use IT ALL.

I can’t say WHICH thing it is, if it’s one. And I may have left out something?
But I don’t care WHICH it is. I still feel better than I have in 6 months. It’s worth living:)

Wishing good health for all of you. One good day does NOT make me whole- yet.
But it’s encouraging:)

Thanks for all the kind wishes!
J.

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ASD, Wandering

Endless boundaries? Endless Worry! – My Wandering Child

Today, I heard of some young children lost – and then, gratefully- found. I found I could barely bring myself to finish reading. I connect so strongly to this issue and I have NO SOLUTION. It’s not like me to have not figured something out. Especially an issue that seems as endless as ‘wandering’.

As I read, I burst into tears as I realized that THIS is STILL my biggest worry/nightmare/stress-inducer. And something about Summertime, with our windows flung open and new outdoor sounds, she is beckoned by some ‘force’ that is stronger than my sensory system, or ‘mom’s radar’. I need only to turn around, to pee OR to change my clothes and she’s vanished. Every single day, caring for the ‘moment by moment’ needs of a preemie infant was EASIER!
Now, I cannot tie her to me- she is nearly my size. But I think of it, a string?a ribbon? and I wouldn’t care about the looks bestowed upon me- the over-VIGILANT mom.

There have been so few public outings and social occasions- where it didn’t end with my heart in my throat because someone in our party let go of her strong hand. She exudes confidence, it’s easy to be fooled. And she’s beautiful, kind, a mover, full of life but a pensive thinker. She was the child of my CHOOSING- it was special how she came to me. We have a beautiful and strong bond and much love for each other, but we don’t match. I am Caucasian and she is African American.
I carry a picture ALWAYS- imagining that I NEED the picture as I’m calling for help to find her.
I’ve dreamed I’m at the store and I’ve lost her and people keep bringing to me these children they have found- a redheaded girl, a fairskinned boy- and I’m trying to communicate to them that she doesn’t match me, that she looks like THIS! That she is MY daughter and I want her back. (AP have nightmares too:)

And at the festival, in real life- the apologies come from the adults, her name shouted over and over, the soft, but hysterical crying of the other mothers, the other children upset as the search becomes frantic, authorities alerted and then- thank goodness- relief as she’s been found!
Except I’m the one- relieved for ONLY the MINUTE she’s found and simply terrified of the next time.

Outdoor festivals, days at the beach, small crowds or none at all- she has ALWAYS, since toddlerhood, explored to the very edge of any safe boundary. It’s not Cute, it’s frightening. And at 9, she’s not just Curious, she’s unwell, restless and potentially unsafe. She walks and talks- so there’s a very FEW people who understand this different part of her brain.

And yes, there are tools, alarms, GPS, locators, etc. – NONE of them WORK good enough for a child that resists being held back as she sees it and so, at this age- I’m supposed to get her consent? Please, wear this. Really?
I need an unbreakable, unremovable, extra barrier to her getting ‘lost’ and a velcro bracelet linked to my cellphone is a very poor option. And the expense anyways, $500. So, for that money this year, we’ll try more supervision this summer…from every waking moment.
As she decides before the house is awake, despite the alarms on doors, to get up to get an egg from a neighbor. Within a minute of any alarm- she can be out-of-sight. And it’s harmless? (NO!) to just leave the house because you thought of pancakes and wanted an egg before you could use the stove and the new neighbor’s car was in the driveway, so why not ask there? At 6:00 am.

Oh – I can’t begin to understand the thought process. I’ve been through SO many mazes like this- for 5, 20, 40 minutes- trying to imagine tracing her steps. How does she think, what drives this in her, how can I keep her safe?
8 other children, so I’m familiar with some parenting issues, methods and techniques. THIS issue is new to me. Having parented before, I had confidence. I was experienced, self-assured. I could at the very least, keep my children SAFE.
But I’ve lost my confidence in regards to these ‘special needs’ far more often than I’ve lost her because its on my mind all the time as I have not yet found a solution.

I also know enough about how her brain works, that she won’t remember the discipline when she wakes tomorrow with a taste for sausages and she remembers that there are some at her girlfriend’s house, across the street, around the block, in their fridge.

Disciplining on this issue is lost on her. It’s a practice of hers that is brain deep and primal. Children don’t know the world to be potentially dangerous, until it is.

When she is just a few years older, I know I’ll get even less understanding. It’ll be thought that she just needed to get away- perhaps from me- her exploring companion as well as her protector up until now- I’ll be a teenager’s mother THEN and people will want to assume she’s runaway for the night, crashing on someone else’s couch or borrowing someone’s car for a ride. This ISN’T my fatalistic thinking. It’s a REAL behavior.

School will end – 2nd grade- in a few days time and for 16 hours a day, this will be my primary concern- again this summer. I’m sure some other ‘special’ moms have similar concerns.
I’ve found no other help or ideas. I just hire as much supervision as I can afford- even so- it often fails. If the sitter/supervisor is confident, it’s just that the supervisor hasn’t finished out the day and lost her yet. On the way to the bathroom, out the back door, inside a friendly neighbor’s door, around into the next block where we don’t know everyone.

The territory just widens…invisible disabilities such as this ‘wandering’ is the one thing I have not figured out how to manage and it’s the one thing that could have the very worst consequences.

How do people deal? With a 100 lbs of random, curious, naive, fearless behaviors such as this? Any ideas?

I’m keeping EVERYONE who has this silent issue to manage, in my prayers.
Thanks- I think this worry has been bottled up a while…
It’s going to be an Endlessly worrisome Summer:(

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Uncategorized

Guilt. Empathy. Adoption.

Awesome. Real. True for me. Words like GUILT – though we visit so often with birth family, though she was removed from their care- BECAUSE we adopted her, she is forever different and will never quite fully fit- there are no CLUBS for biracial Black/CC girls, with too much ‘family’ to explain, parents old enough to be her grandparents, siblings that don’t look the same or share a name, who were hurt in ways that take a lifetime to heal.

– what SHE knows and feels about all of that, even at 8, is that it’s ALL MY FAULT. And as any mom- it’s a pair of work boots you put on and trudge through this mud from time to time throughout their lives. 
Another child of mine, a teen, feels so strongly right now that she was TAKEN BY me, FROM everything she thinks is missing and that she might have, could have had…and it’s heart-breaking that it’s not true- she was literally ‘left’, had no time to make any memories with her birthmom, didn’t ask to go to orphanage, the US, a family, another family, an RTC and be ‘left’ over and over- SHE didn’t ask for ANY of that, but because we ended up together- it’s ALL MY fault. 
And because I’m seasoned and worn a bit through older children who also- for NO traumatic reasons at all- claimed it was ALL MY fault- I’m cool with it. It’s a bit hard on me but none of it can EVER compare to how hard it is on them. 
I’m safe. No matter what happens today, I’ll get up and love them all over again tomorrow for my lifetime- and it’s heart-breaking because THAT STILL will NEVER be ENOUGH. 
This kind of shouldering the bad stuff must bring empathy to all our family members or our relationship and child may not survive. 
And despite ALL the therapy, talks and efforts- I WILL NEVER KNOW how it feels to have managed the challenges in their lives that would break most adults to bits!
But like the author said SO WELL, that guilt keeps me trying. Overflowing with empathy, though I don’t know if my empathy ALONE could possibly heal them. They NEED empathy from the WORLD- and I can’t make that happen fast enough:(
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