Thoughts from Mother’s Day, and I’m making progress

I wrote this on Mother’s Day, and thought I posted it, but it didn’t post:

It is a day to honor mothers. Most years, I only notice honoring of women who have given birth to children who are still here. This year, maybe because I was vocal on facebook about my motherhood status, I have seen more acknowledgement of mothers whose motherhood doesn’t look like the regular, expected kind. It feels validating, and that’s nice.

I was anticipating a very difficult day, since my only children are gone. Therefore, it was a difficult week. I cried and moped quite a bit.

I also had hoped to find out this week that I was pregnant, but once again, I found the opposite. It hasn’t been that many months this go-round, but it being the sixth time trying to get pregnant, with no births and four deaths, every month of failure, of delay, is another reminder of what I do not have. Of what I don’t know if I will ever have. My child; to hold, to raise, to see grow, who will call me mom.

Meanwhile, my therapy is going really well. I’m learning to be mindful in everyday life. To pay attention to my emotions, where they come from and what they are urging me to do. To decide to act in ways that are more effective. I’m learning a lot of different ways to tolerate distress without hiding myself in the basement zoning out in front of the TV, or eating way too much, or both. The ways are mainly distracting myself until it gets better.

Most importantly, the skill I’ve learned from my Dialectical Behavior Therapy is what’s called Radical Acceptance. I had read a little about it pretty soon after I started DBT, and I was certain it was never going to happen. I mean, just accept that all my babies were dead and pretend it’s fine? NO.

It’s way more nuanced than that. It is complete acceptance, but not saying it’s ok, or that I like it. It is the acknowledgement that the things that have happened are my reality, and they cannot be changed. My being angry and bitter that my children are gone was never going to bring them back. There is no way to get them back. My anger only served to cause me suffering. So, it started to seem like maybe it wasn’t the best thing to keep in my head.

I feel so much lighter. The world is not as dark and terrible as it was. A lot of things still suck, but a lot of things are good, and it’s ok to enjoy them. It’s not a betrayal of my children. I will always believe that the last five years would have been happier if I had gotten to keep them with me, even one of them, but nothing can ever change what has happened and what is, I can only change how long I let it keep me from living a life worth living.

Feeling sick and desperately sad

Getting out of bed is so incredibly difficult. I just want to go back to sleep. And then sleep some more.

Falling asleep at night has been tough because the cramps are terrible this month. I haven’t had debilitating cramps like this since before I started birth control 13 or 14 years ago. I’m also having crazy back pain, almost all of it hurts. I tried yoga, but that made me hurt all over; and a massage, which helped for a couple days. The thing that helps the most is baths that are so hot my skin hurts, but more than one of those a day seems ridiculous.

I saw a doctor on Wednesday, and the result was pretty much – I don’t know what’s wrong with you, have some Vicodin. That helps, but it’s not really a solution.

January and February, I was sick for about three weeks with a cold that turned into bronchitis, then there were two days of a flu-like thing. I had two days of not being sick, and then I got something very like strep. Then my period started, and even when the sore throat etc. ended I did a lot of moping.

The last two periods have been so upsetting to me that I just shut down. I want to be pregnant, and I’m not. I want to have a child, and I don’t. In three months, it will be 5 years since we first started trying. We’ve only been married 13 months longer than that. Trying to have a baby has taken over everything.

I tried an increase in anti-depressants, but it made me dizzy. That happens with both of the kinds I take, so I can’t depend on that. Exercise helps on the day I exercise, but it’s so hard to maintain.

I have zero solutions here. Just a lot of whining. If I find any solutions, I’ll let you know.

Friday, and now I have the flu

Tuesday I drove down to Rochester for my injection. They decided that since the last one didn’t last as long as hoped, they would do this one with less steroid and more “needling”. Basically, more poking at the painful muscle, in order to convince it to stop whining. It has been screaming since then. the acts of sitting up and laying down have been awful unless I used just the muscles in my arms. I did go back to the Lidocaine patches today and that helped a bit.

Yesterday was the last of my bronchitis, but the start of a really achey flu. I slept on and off ’til noon, then I took a two hour nap this afternoon. It’s completely ridiculous. The Dad has it too.

Also, just for fun, my pap smear in January came back abnormal, and positive for HPV. It’s a recurrence from when I had it in 2004. I had my colposcopy to check for precancerous cells on Wednesday morning. My regular OB doesn’t do them, so it was a doc in the practice I hadn’t met yet. She asked a bunch of questions about my health and life and it was so sad she had to hug me. It was surprisingly not weird hugging a stranger while not wearing pants. Well, I mean, she was about to stick stuff in my vagina, so how much more personal could it get? The results came in today and everything is fine!

Our Minnesota Sacred Harp singing group is having its all-day singing tomorrow, and we’re not going because we feel like shit.

And still, I’m way happier than I was a year ago. There is hope that I will be ok, there is hope that I will someday have a living child, and I feel so much stronger and able to get through. My new-found strength is mainly due to a program I’m in that I’ll write about in my next post.

Further update

After the attempt at an IVF cycle failed miserably and painfully and I had a breakdown, I was given most of August off of work to recover. I did another partial hospitalization program, at a different hospital from the one I did in 2011. A much better hospital.

It was really good to have the structure of getting up every morning with somewhere I needed to be without the stress and responsibility of work. As therapy, though, it was more of a stop-gap than actual treatment. It was 6 hours a day, but with an hour for lunch, and an hour of guided meditation, during which I always fell asleep. Support and validation and a little education on distress tolerance were helpful components. I also visited my regular therapist twice a week from August through October.

By the end of September, the pain from the hematoma (what happens when you hemorrhage internally, and the blood sits in there in the way pushing on stuff) finally left.

At the beginning of November my strange abdominal pain and nausea came back. I immediately called Mayo in Rochester for an appointment with their GI department. But, I missed more work days, and despite getting the required doctor’s note, I got fired for absenteeism. I was really disappointed and upset, but, I realized that without the job I could focus on figuring out what was wrong and getting treated. Plus, I wasn’t going to be eligible for paid vacation, and even then, only 1 week a year, until I had been working there 13 months. Also, even though I was doing the same job as one of my co-workers, who had not finished his Master’s degree, which I have, he was full time and a scientist and I was a part time technician. I didn’t have a very good deal.

At Mayo, the gastroenterologist was incredibly thorough, and figured it out within half an hour. This pain and nausea that I had been dealing with on and off for 6 and a half years was not serious and deadly and chronic. It’s called abdominal wall pain, and is very common, but rarely diagnosed. The theory is that most doctors don’t think about it when there’s a possibility of life threatening illnesses. After you rule out all the possible organ failures, someone should think of it, I think. The treatment is a steroid and pain killer injection into the worst part of the pain. I finally got that done November 21st, and within 24 hours, my life was changed. The pain, nausea, exhaustion, anxiety, and even a lot of the depression, so much suckage just stopped.

I had three fabulous pain free weeks. And then I missed two doses of Effexor because Target didn’t fill my prescription the first two times I asked. The night sweats started Sunday night, after the first missed dose. By two hours after the time I should have taken the Monday dose, I was so dizzy that moving my head made the world go black. I got these funny electric shock feelings every once in a while, just little jolts, especially in my hands. There was no possibility of eating. Target finally got my prescription filled so that I was only three hours late on the dose Tuesday morning. The shocks finally stopped Wednesday afternoon. I could eat again Wednesday night, but I was nauseous and a little dizzy for the first few hours of the day for another month. DO NOT miss your Effexor!

About six weeks after the miracle injection, the pain started coming back. The shot shouldn’t be more often than every 12 weeks, so my next one is tomorrow. I’ve been using Lidocaine patches to get me through, and they help a lot.

Wednesday I hope I’ll be done with this bronchitis, and the abdominal wall pain will be gone again, and I will feel great!

A year without Greg

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We lit a candle and talked to our son. We love him, we miss him, and we hope someday he has a living sibling or two who feel the depth of our unconditional love for our children.

This type of parenthood is difficult and breaks my heart daily. Still, there is hope that a more normal family is in the future.

I’m back!

Tomorrow it will be a year since we lost Greg. It’s been more than four and a half years since we started on this journey to parenthood. We still have no living children.

In June I had two weeks of abdominal pains, and decided that the answer was to go down to the Mayo Clinic in Rochester, MN, where they have the country’s best GI department. I made an appointment for mid-July, but the pain stopped by the end of June, so I cancelled and moved forward with the IVF plan we had made.

My last post was our IVF egg maturation and retrieval schedule. I started Lupron on time, my first shot I forgot the pinch and fast jab instructions and bruised really badly. I can still see it. I was completely exhausted and pretty pissy for all three weeks of injections. After an insane number of transvaginal ultrasounds, (seriously, one day I had to have 2, because the first nurse couldn’t find my left ovary) I had my egg retrieval on July 24th. We got 8 eggs, 7 mature.

About 7 that night, the pain had gotten so bad that anytime I moved I had to scream and cry and hyperventilate a little. My husband took me in to the ER. Hooray! Another transvaginal ultrasound! At least this one I had IV dilaudid first. They found that my right ovary had been hemorrhaging, and was 8 x 10 cm (normal is 2 x 3.5 cm). They put in a large bore IV in case I needed a transfusion, but it took two tries. I stayed overnight and they checked my hemoglobin every three hours. Normal is between 12 and 15 g/100mL. My usual level is 14.5. It bottomed out at 9.3. I was sent home when it started going back up, meaning that the bleeding had stopped. Actually they wanted to discharge me when the falling numbers slowed, but I refused to leave until it went up.

We had gone to the hospital connected to my RE’s office so they could call him and get his input. He didn’t even return the calls and pages until Friday morning. He actually did show up for a few seconds. He emphasized that I had had a little bleeding and it was causing a little pain. I made an appointment to go to the office Saturday morning to have some more blood checks. It took the lab tech there four tries to get blood, bringing my count of needle pokes for Thursday-Saturday to 14.

Four eggs fertilized. On day five, scheduled biopsy day, one had stopped growing and the other three hadn’t grown fast enough. On day 6, the last chance for biopsy, none of the embryos had enough cells to be eligible for biopsy.

The whole thing had failed before we even got any answers.

There was no hope anymore. It was all over.

So, it was another ER trip, this time for suicidal ideation. I couldn’t bear another stint inpatient, so I agreed to partial hospitalization, a three week, six hour a day, five day a week, intense therapy program. It helped.

That’s enough update for now.

We have a schedule!

We had our consent signing yesterday with the IVF clinic. So many initials and signatures! We had already made decisions on what happens to extra frozen embryos in all the possible scenarios, so it went pretty fast.

The important and and exciting part though was the schedule and protocol. Aetna, our insurance company, has been taking a month to approve pre-authorizations for infertility medications, so we are delayed another month.

I start birth control again on the 15th of June.

Lupron injections start on July 2nd.

Last day of birth control pills July 7th.

Baseline ultrasound July 11th.

Follistim and Menopur start July 14th (my dad’s birthday)

Egg Retrieval sometime around July 25th.

Biopsy 5-6 days after.

PGD results about a week after that.

At least 6 weeks from Egg Retrieval to Frozen Embryo Transfer, if there are any good ones. That’s September 5th-ish. Except they don’t do them the week of Labor Day, so the earliest opportunity is September 8th. Pregnancy tests likely would be 14 and 16 days later.

So, September 24th is the absolute earliest we would know if it worked. There are many earlier steps at which we would know it didn’t work.

I so hope it works.