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Tuesday, October 21, 2014

Second Angelversary and Wave of Light


Today is Jesse's second Angelversary. For a while now I've been seeing pregnancy tests in my timehop since I took the pictures with my phone. Boy is that hard, but I don't have the strength to delete them. This morning I watched my niece for a few hours and she was pretty fussy. On one hand it was distracting but on the other it just hurt. Still I think this year has been easier than the last. My husband got me some root beer and Little Debbie brownies and that has definitely helped! After my mom took my niece I took a nap and just woke up a little while ago. I plan to take it easy the rest of the night and cuddle my puppies close. I may not have cried as much as last year, but grief is still exhausting.



The 15th of course was the Wave of Light. We went to the ceremony put on by the same group as last year, only this time it was in a church instead of a park. It was nice because we could sit down, which is helpful when you are so emotional.

 I got this shirt from I Am A Mother To An Angel, they have a website but I saw it advertised on their Facebook page. It's a little big because when I ordered it they didn't have women's sizes yet just men's/unisex. The words on the pink side of the heart are from a poem called This Hole by Lacey Harris-Willoby. I love it and I plan to wear it often even when it's not October anymore. You can still buy it but only for the next six days. I also had on my awareness ribbon paracord bracelet with colors for endo and PCOS.

I was glad this year we had a name for them to call out when it was our turn to light our candle. Last year it was just "Baby Lastname". I know it probably seems weird to name your baby over a year after they died but I'm happy we did. I just wish we had decided to do it sooner!

The image I posted on the 11th about the Wave of Light I also posted in a Sims 3 forum I frequent. (The picture was taken in the Sims 3 with my simself and simhusband if you couldn't tell.) I was a bit worried about bringing in such a heavy topic but everyone was really supportive! Other angelmoms spoke about their own losses, or the losses of friends and family. Most had never heard of the event but pledged to light their own candles. I am happy I could help raise awareness for something so important to me. I kept an eye on the instagram hashtag #waveoflight and there were so many more pictures this year than last. Almost 11,000 all together! I can't wait to see how many more there will be next year.

This is off-topic but I didn't want to make a separate post just for this. I found out the blood work my doctor ordered will be almost $500. That means with the injections and sleep study that visit will have cost us $1300, $1100 more than expected. This doesn't even include my follow up visit tentatively scheduled for the first of December or any subsequent tests and medications once he gets the results of these. We simply cannot afford it so at this time I won't be getting any blood work and will probably cancel my follow up appointment. I was hoping for answers and treatment but have resigned myself to constant pain and lack of sleep. My mother set up a gofundme campaign for me but so far it hasn't raised any money. I will post about it if a miracle happens and we somehow get the money.

Monday, October 20, 2014

From Left to Write: The Goddess of Small Victories by Yannick Grannec


So I know I'm super duper late with this post, but I finally feel up to writing it! And I have at least two more blog posts in my head I need to find time to do after this... I still haven't finished the book, but I feel like I've read enough to post about it.

The Goddess of Small Victories is about Kurt Gödel, a famous mathematical logician and philosopher, as seen through the eyes of his wife Adele. The story starts in 1980 with Adele in a nursing home, reluctantly opening up to Anna who was sent to befriend her by some historians who want access to her husband's archives. From then on every other chapter is told from Anna's perspective, and the others from Adele's point of view as she meets and falls in love with Kurt in the 1930's.

One thing that is mentioned often enough is that Kurt and Adele have no live children, Adele having miscarried their only child not long after they were married. This obviously struck a chord with me as I can see myself in a similar position. I doubt one day historians will be as interested in the life of my husband (not that I think he's boring or anything) but it's very possible we could remain childless throughout our lives. It's something that hurts to think about, especially this time of year.

I have a few friends who are childfree by choice. When people find out they don't want children they get questions like: "But who will take care of you when you're old?" I know for them it can be as annoying as people asking infertiles why they don't just adopt! Even if you have live children, there is no guarantee they will look after you in your old age. Even if they pay for your care they might not visit often. Without kids there are still options, like nieces and nephews, godchildren, family friends, but it is still something that I think about.

Wanting children for me isn't just about having a cute baby to dress up and cuddle. It is about a lifetime of interactions. Being with them in their first moments of life until the last moments of mine. A childless life isn't inherently worse or better than one with children, it just depends on your personal wants and desires. Adele doesn't seem to mourn the absence of children the way I would. I can't even comprehend how much I would lose out on by not having children in one way or another. Reading about someone without children at the end of her life reminds me that this dream is still worth fighting for.

This post was inspired by The Goddess of Small Victories by Yannick Grannec, a novel about brilliant mathematician Kurt Gödel as told from his ex-cabaret dancer wife’s perspective. Join From Left to Write on October 16th as we discuss The Goddess of Small Victories. As a member, I received a copy of the book for review purposes.

Wednesday, October 15, 2014

Health Stuff

I don't know if I've mentioned it here for not, but for a while now I've been dealing with flu-like body aches. At first I figured it was due to hypothyroidism, and it might have been or still could be. Last time they checked my thyroid my levels were fine and I've been on meds for that quite a while now, but I haven't seen any improvement. Other symptoms (like chills) seem to be better. Along with that I've been having an awful time sleeping because it hurts. It feels like my whole body is bruised, and it gets worse the longer I put pressure on it. So I toss and turn a lot trying to find a way to sleep that hurts the least. I never feel rested when I wake up and am often quite stiff. I also keep having these sensations where it feels like I've walked through a spider web or there is a bug crawling on me.

I went to see my primary doctor about it and they ran a few tests, one I know for lupus, but they came back fine. I was told they didn't know what was causing it and to see a specialist. My first appointment with the rheumatologist was yesterday. I was told it would be $200 which is a lot but it's important. I walk in and literally everyone else in the waiting room was at least twice my age, which always makes me feel good about myself. I'm tired of hearing "you're too young for __!"

The receptionist, nurse, and doctor were all nice though. The doctor seemed to take me seriously. I'm always afraid of being treated like it's all in my head, I'm a hypochondriac, I'm a drug seeker, etc. He asked a lot of questions and pushed on a bunch of body parts, most of which hurt. Then it became a game of "which is better, this or that" like when they show you the films at the eye doctor.

I have no idea what he suspects is going on but they gave me two injections, one on each side of my bum. I'm supposed to keep track of whether they are helping and if so how much and how long it lasts. So far I don't know because the injection sites hurt quite a bit. I think my back doesn't hurt as much, but it could be a case of my brain focusing on the new pain, you know? Body aches seem to be just as bad. The injections didn't hurt nearly as much as lupron thankfully but I couldn't sleep on either side or back and it hurts to sit too. I think I'd be okay if it was only on one side or the other. I was also given an ultrasound and I have to do a sleep study Thursday night.

On top of all that he's ordered 15 blood tests. Parathyroid hormone, Vitamin D3, angiotensin-converting enzyme, Erythrocyte Sedimentation Rate, Ferritin, Human Leukocyte Antigen B27, Thyroglobulin AntibodyThyroid Peroxidase Antibody, Thyroid Stimulating Immunoglobulin, Vitamin B12, BUN:Creatinine Ratio, Sjogren Antibody Panel, Celiac Disease Comprehensive Panel, and Iron Saturation. I think my primary doctor was mostly going by my TSH as far as my thyroid goes, so it seems like he wants to investigate that further. I know what the vitamins, iron, and celiac are. The other stuff I have no idea.

I really appreciate being taken seriously; I cannot stress that enough. I'm glad he wants to be thorough. I'm not glad I finished my visit to find out it cost $800. Eight hundred dollars! I was expecting $200, remember, and that is a lot for us at the moment. They let me pay half but I'm sure they will want the other half before my follow up which is tentatively scheduled for the first week of December. This doesn't even include my blood work! I have to go to a lab for that. This is just not doable for us, at all. It's impossible and I'm not exaggerating. We do not have the money, we don't even have a credit card we can put it on. Since graduating and finishing his internship DH has been looking for a better job but hasn't had any luck so far. Any friends or family I'd be comfortable asking for help aren't doing much better than we are.

Plus yesterday morning I found out getting my records to send to the endo specialist in Atlanta will cost $1 per page. I don't even want to know how many pages it is, and they can't tell me until it prints. Once it prints I have to pay for it even if I don't want everything no matter how much it costs. I already knew we couldn't pay for surgery, but they will keep your records for a year. I know other people who have done fundraisers to pay for it, so once we got an estimate I was going to look into that. But I can't get the records review and estimate without any records!

So yesterday was just a bad day. Can't do anything about my endo. Can't do anything about everything else. I just hope these injections I payed so much for do help and last for a while. I feel like saying if they don't I will cry, but that's a bit disingenuous since I'm crying already. Add in the Wave of Light tonight and I'm a total mess.

Today my From Left to Write post is due for The Goddess of Small Victories by Yannick Grannec. I've read about a forth of it so far and it's really good! If I could ever sleep and feel rested enough to pay attention to a book I'd have finished it. I've only read 10 books this year because of such problems and it's so disappointing. I don't know if I'll be up to writing a post on it today. They send you the books for free because you agree to post about them on time, and if you don't hold up your end of the deal you are less likely to get books (which is completely understandable). I hate feeling so unreliable.

Saturday, October 11, 2014

Wave of Light


For those that don't know, almost two years ago we lost our baby Jesse Quinn. I participated in the Wave of Light for the first time that year to support my friends, not knowing I would miscarry myself a week later. If you have lost a child you can light a candle in their memory. If you haven't you can light a candle in memory of the children lost by your friends and family.

Miscarriages are devastatingly common. Approximately 1 out of every 4 pregnancies will end this way, yet it's something we aren't supposed to talk about. You aren't even supposed to announce until the "safe zone" of the second trimester, so if you miscarry the rest of the world can stay ignorant. It is almost guaranteed that one of your friends or family have lost a child although you might not know about it. By lighting a candle you can show support and let them know "I am here for you" if they need a shoulder to cry on or a caring ear to listen.

Monday, September 15, 2014

From Left to Write: The Underground Girls of Kabul by Jenny Nordberg


I feel lucky to have grown up in this country, in this time period, with my mom. I never felt pressured to act like my gender or give it up completely. I could play with my tonka trucks and ninja turtles in a frilly Easter dress, or ride my bike in heels. I could play with barbies and my toy kitchen wearing pants and a plaid shirt. I could cut my hair or leave it long, whichever I preferred.

I spent a lot of my teenage years with teenage boys and felt like "one of the guys" without having to discard my gender and literally become one of the guys. I spent countless days alone with one or more boys, often in their bedrooms, without it impacting my reputation. And I didn't need to pretend I was also a boy to do so! When I started dating my husband he could ask me about my sexual history (or lack thereof) directly and believe me even if there had been gossip saying otherwise.

One woman in the book states that it is the wish of ever Afghan woman to have been born a man. When the biggest difference between men and women is freedom who can blame them? I too have often wished I had been born a man but for completely different reasons. So many of my health problems throughout the years have been female exclusive. If I was a man I would not have PCOS or endometriosis. I wouldn't menstruate at all, let alone as heavily and painfully as I do. My weight probably wouldn't have shot up as soon as I hit puberty and it would be easier to maintain or lose whatever weight I did gain. I wouldn't have a dildocam shoved up one of my orifices several times a year or need multiple surgeries to burn and cut off the tissue that causes terrible pain more days than not.

If becoming a bacha posh could have saved me from this I would have done it in a heartbeat, and in that way I can understand why these girls do it. Really I think, more than wanting to have been born a man, we wish being born a woman would not be so disadvantageous. More than once Afghanistan has been ruled by groups wanting to bring feminism to the middle east, and yet so little has changed. If you think about it not much time has passed since our own country has become more female friendly. I must have hope that one day things will change for them, and for me.

This post was inspired by The Underground Girls of Kabul by journalist Jenny Nordberg, who discovers a secret Afghani practice where girls are dressed and raised as boys. Join From Left to Write on September 16th as we discuss The Underground Girls of Kabul. As a member, I received a copy of the book for review purposes.

Saturday, September 6, 2014

Why so finicky?

For the most part things are going well in the colitis department. I'm back on my normal diet other than a few adjustments and have been doing okay. The other day I had my favorite Mongolian barbecue from the best place ever and was perfectly fine. Then a few days later I have steak (which was the meat in my Mongolian barbecue) and some french fries (which I've also eaten without problems) and completely relapse. Yesterday I stayed up for about 36 hours because I couldn't stay out of the bathroom long enough to fall asleep. After half a day of not eating anything at all I was finally able to sleep. This morning I had some toast and jam, something I've eaten a LOT of since I was hospitalized, and apparently even that is not good enough for my body right now.  Grrrr. I suppose I will have to try a liquid diet again for a bit and see if things change.