“Who in the world am I? Ah, that’s the great puzzle.”

Somewhat appropriate to update this blog on the holiday of the egg, no?

Thanks so much for the sweet comments and checking in on me these past few months…I’m okay. I haven’t had a lot to report, unfortunately, and life has been rather hectic. I do have some news, though, that is worth sharing for any of you who are still out there.

The Good News:

• While my October ultrasound showed only my right ovary and no follicles, my January ultrasound showed both ovaries and 2 follicles on my right one – they weren’t huge, but they were there, which I consider a victory.
• My stubborn ureaplasma is finally gone, so the treatment in NYC was worth it as 3 different oral antibiotics could not get rid of it.

The Bad News

• No cycle since October.
• I saw Dr. Click Clack (the naprotechnology doctor) a couple of weeks ago and we’ve decided to stop the hormone therapy for now as I have a lump in my breast (it’s been there for about a year, and I’ve had a mammogram and 2 ultrasounds (last one in December) and the radiologist says it has not grown, but it’s making me nervous and I’m trying to get a biopsy so I can have a more definitive answer). Dr. CC wanted to just stop my estrogen, and just give me prometrium, and I accepted the prescription but haven’t filled it. Frankly, I’m really tired of taking these hormones and according to Yu Ming (my Chinese doctor), I’ve been having all kinds of trouble with liver and gall bladder congestion – likely because my body is having to work hard to try to process these hormones. So I’m taking a break from them. I thought going off them would make me feel terrible, but it’s been a few weeks and I feel okay. Yu Ming has put me on lots of herbs (in pill form) and is putting a LOT of needles around my breast to try to clear the cyst or lump or whatever it is. Yu Ming also thinks I have a lot of deep emotions that are blocking my energy flow. So we are working on this, too.

And that’s all my physical health news.

Emotionally, well, I’m alright. I still get sad now and then because I haven’t been able to have a child and I don’t understand why not me. Especially when there are so many idiots out there who are given the privilege. But as I’ve exhausted most paths to conceiving, now I am left with just living. Mr. Hatter and I are able to focus more on just ourselves now that The Teenager is an adult. (Remember, we’ve never actually been just the two of us. We’ve been raising a child our whole relationship.)

Even though they aren’t my first choices for building a family, I thought I should offer up the other IF menu options to Mr. H – I asked him recently did he want to try to do donor egg or adopt a baby, or even adopt 2 or 3 older children…He said he was content with things as they are. I know if I did become pregnant, he would be thrilled, but he has had a genetic child, so I guess he has come to terms with not having more. And I’m okay with that. We adore our dog, and hope to have more of them when we have more space, and that will be our family.

Beyond that, I’m doing a lot career-wise these days, which has been very nice. Lots of creative flow and interesting work. And we’ve continued to travel a great deal, and socialize and have fun. Since I can’t have a baby, I’m going to have fun, for heaven’s sake. So, yes, I go out for fine meals and I drink champagne and go dancing and I treat myself to the spa and I spend lots of money on clothes and shoes and purses. Life is too short to live in a sad place all the time over what never was. 

And that’s where I’m at. I hope that everyone out there is well, and that maybe knowing I’m not a puddle on the floor at this stage is somehow helpful to someone out there…Feel free to email me if you ever want to check in outside of this blog: verymadhatter@live.com XOXOXO

 

“The horror of that moment,” the King went on, “I shall never never forget!” “You will, though,” the Queen said, “if you don’t make a memorandum of it.”

You know what’s lovely? When I don’t post for a long time, but I still hear from some of you, asking how I am. That’s really very sweet….thank you. As I was writing in an email to Valery, I’m sorry that I am not really keeping up with reading blogs. It is too painful a reminder that we were all blogging and trying together, and now I am alone. 

I don’t have a great deal to report, but I thought I had better surface so that you know I’m still hanging in over here in barren land.

Long story short, my hormones are still messed up, and I haven’t gotten another period.

I did go back to see Dr. Click Clack (the Naprotechnology doctor) and I now have her on board – I will now go to her for all my bioidentical hormones and bloodwork and ultrasounds and so on. Dr. March Hare was not available enough and not monitoring me enough. Unfortunately, this past cycle I screwed up and took Estradiol for 6 days, thinking it was Progesterone, which is probably why no period…and then I went away for 10 days to a country that doesn’t allow hormone therapy (just my #$%^* luck) so I’ve been having hot flashes and been all out of whack. But now I am back and able to get back on track again. I also took 30 days of a low-dose antibiotic as recommended by Dr. WK to take care of any bugs that my period might have woken up. He is now saying I can take it for several months…I am not sure what to do about that – whether that means I *should* take it for several months….I don’t really want to unless I have to…at the same time, many of his patients have reported getting pregnant a few years after their treatment with him while on antibiotics for another reason, so I don’t know…I will have to email him to discuss further. I also got Dr. Click Clack to do some swabs to see if my ureaplasma is finally gone post-treatment with Dr. WK. I haven’t heard from her, so I assume it was clear – this is good.

Prior to my trip, I’d been seeing Yu Ming once a week for acupuncture and herbs. I also went 6 weeks without foods that my blood test showed I was sensitive to in order to reduce inflammation (I now have to get back on that wagon). AND Dr. Click Clack wants me to go back to taking Low Dose Naltrexone, so I am doing that again. Oh, and I saw Energy Man last month and went to 3 massage therapy appointments to try to get all the kinks in my body worked out (still need to go back).

So all of this to say, I continue to do a lot to try to get my body in balance. It’s a lot of work, and I’m still nowhere near the finish line. I try not to be sad that there is no baby, and there may never be one. Mostly I just suppress the sadness…if I let it out, it’s just too much.

I had a strange thing happen during my energy healing appointment. My whole body filled with white light (this usually happens) and then I had a conversation with my mother (who passed away a few years ago). It was like a long distance phone call with her in my head…or maybe just my mind playing tricks on me. She told me that it’s good that I’m taking care of myself and not to worry, she is taking care of my baby girl for me until she can come join me. She said she is lovely and she is enjoying her, and she will be coming to me in the next 6 months to a year. Even if it is my mind playing tricks, it was a comfort to think my baby girl’s spirit is with my mom – it has made me sad that I couldn’t have a baby when she was alive.

The Red Queen shook her head, “You may call it “nonsense” if you like,” she said, “but I’ve heard nonsense, compared with which that would be as sensible as a dictionary!”

For the first time in 11 months, I started a period today.

Of course, I understand that a 75-year-old can have a period on bioidentical hormones, but I’m still happy.

Yu Ming is convinced I still have eggs, and that after a few cycles my body will catch on, and I can be weaned off the hormones.

Here’s hoping.

I also want to send out some blog love to Paige at tearsandtantrums, who recently lost her 2 sparks…Paige, there are no words, just love.

“Still she haunts me, phantomwise, Alice moving under skies, Never seen by waking eyes.”

It has been…

11 months since my last period.

7 months since my second treatment.

6.5 months since I started regular acupuncture again.

4 months since I started taking bio-identical Progesterone and DHEA drops.

3 months since I started taking bio-identical Estradiol.

3 months since I was told I do not have any allergies.

2 days since I doubled my Progesterone dose ( upon Yu Ming’s advice as I can’t get an appt with the March Hare).

1 day since I went for a blood test to see if I have food sensitivities (I will get the results in 7-10 days).

Symptoms…

This month they were the worst – PMS symptoms (cramping, irritability, sensitivity) plus severe joint pain and depression. I’ve discovered Mr. H has joint pain, too…so clearly these are herx symptoms from the antibiotic therapy, as Yu Ming has said. I have found some posts by those with Lyme disease who say they also have had joint pain after treatment. It apparently does pass with time. I am sure learning which foods to avoid will help me, though – I want to reduce the inflammation in my body as much as possible.

Actions…

So, other than getting that blood test done and doing yoga, I have been trying to pursue other activities for my health and overall wellbeing. I am starting dance classes and a knitting class, and have been continuing to make an effort to do fun things with girlfriends and Mr. H.

I’m also trying to gain momentum on the “High FSH Moving On” forum, so if anyone out there is looking for a place to connect with other women who are backed into a corner like me, come on over…in a couple of weeks we’ll be starting a little book club on The Silent Sorority. This is the link:

http://www.network54.com/Forum/741945/

When I’m not here, that’s where I am.

“She who saves a single soul, saves the universe.”

Here I am.

How long has it been?

Too long in some ways, but not long enough in others.

I have had some bumpy road lately, but I am still here. 

I am finally feeling physically better.

I attribute this to the bioidenticals I’ve been taking as well as the magical Yu Ming, who helped alleviate the pain in my right arm with one fantastic needle in my shoulder. My feet are still a little stiff when I wake up, but I am much much better and I am sure it will only improve with a little more time and a few more acupuncture treatments.

Still no period, but Yu MIng and Dr.March both seem to think it will just take time for my body to catch on. 

I was supposed to go for an ultrasound and more bloodwork a couple of weeks ago, but I’ve been away. And I want to delay it as long as I can in the hopes that the better I am feeling, the more likely antral follicles will appear and my hormone panels will look good.

Mr. H and I have been on some trips, which has been fun, and a great way to forget the emotional pain of it all.

I’ve been getting some work done on the kitchen, and am enjoying the designing part – choosing new colours and pieces. I’ve always liked nesting.

Today was a good day. I took the dog to the beach for a swim. I had delicious coffee. I ate wild blueberries. I worked out at the gym. I talked to my dearest friend on the phone. I made fresh, local trout for dinner. It’s the little joys that are keeping me going. And I confess always carry that tiny hope for a miracle baby.

I’ve helped to start a High FSH Moving On forum…it’s slow-going right now, but it’s nice to connect with other women who are in the same boat on Lake Limbo. I feel like so many of the IF blogs I have followed have become Mommy blogs and anyone who hasn’t gotten pregnant just faded away into the ether…it’s very lonely being left behind. And it’s good to support each other. (Please come join us, if you’re reading this and you are in that place, too.)

And then there’s the rest of you…my lovely blog sisters who haven’t given up on me…those of you who keep checking on me and asking how I am. That’s so very sweet of you and it means so much to know that you care and haven’t forgotten about me. Thank you.

Thank you, thank you, thank you! 🙂

Oh So This is Rock Bottom

Thank you to all of you who have checked in on me in various ways during my silence. It means a lot to know that you are thinking of me.

I wish I could share some good news with you all. Alas, I am in a very dark place these days, chemically and physically.

I have not been myself. Nor do I know who myself is anymore.

From what I can tell, there are multiple things at work, and they are all putting me into a tailspin of sorts…my understanding from the message board for patients of Dr. WK is that the antibiotic treatment can really put your immune system out of whack for a bit in the short-term. And I am discovering that a few other women have had similar symptoms before and/or after the treatment (particularly joint pain and autoimmune symptoms) and that there are some other factors that may be at work – yes, we all have a bacterial infection in common, which the antibiotic treatment helped to put in check, but some have been diagnosed with Lyme disease as well, and hypothyroidism, too….So, while I may have taken care of one piece of the puzzle for me by getting treated for the bacteria, there may be other things I need to explore to deal with the other challenges I’m having, which may or may not be related to the fact that my body was coping with this long-term bacterial infection. Like everything else in this journey, on one hand it’s good to know there may be solutions out there, but on the other I’m just feeling so frustrated and tired and angry and depressed about it all. Most other women on the board, though, seemed to have gotten the treatment when they were still having cycles and therefore caught things in time in order to enjoy better cycles post-treatment and MANY have conceived post-treatment. So, if any of you out there are considering antibiotic treatment, please don’t let my experience sway you – if I had gone sooner, I might have had a better chance at a better outcome for my fertility.

Here is the muddled laundry list of things I am dealing with/thinking about:

(1) The allergy scratch test that Dr. March Hare sent me on came back negative for everything. The March Hare, however, thinks I am allergic to something and that is what is causing my joint pain and so on. His first guess is nightshades and his second is dairy and/or gluten. He advised me to stay away from nightshades for 2 weeks and then stay away from dairy + gluten for 2 weeks and then stay away from all of it for 2 weeks. I have yet to fully begin this process, and I am looking into taking the blood allergy test because, really, I just want to know exactly what to avoid rather than do all the above. Lazy, I know, but I feel like after all I’ve been through already I deserve a shortcut.

(2) I am continuing with twice daily drops of DHEA, plus HappySense or FemMed Sleep at bedtime, plus from the 15t-30th of each month I am applying Progesterone cream to my wrist. The March Hare has also added a solution mix of Estradiol and Testosterone that I am to insert in my vagina every other morning. I’m also still continuing with my Synthroid for the time being. I really do feel like a hot mess, taking all these hormones to try to feel better (and so far, NOT feeling better at all).

(3) My recent TSH test came back okay..a little less than 1. The March Hare was pleased with that. I honestly can’t give you the details of everything else at this point (I should have asked for a copy, but I was so overwhelmed by it all I wasn’t thinking straight…)….My Estrogen was low, I think, and DHEA low, and the big news for me was that my FSH was (are you ready?) 112. That is not a typo. It is a hundred and fucking twelve. It was 42 on CD3 in October, which was the highest it had ever been on CD3. The highest non-CD3 FSH result I’d ever had prior to that was 53. I should not have been surprised at 112, considering I have had only 2 periods in the past year, but I couldn’t help but be rattled. The March Hare was not concerned, though…he said 112 merely means that my brain is screaming at my ovaries, which are not working well because my hormones are not in balance. That is all. He is still not convinced that my cycle will not return, once we straighten all of this out. On the Dr. WK message board I found a few posts from women who said that following their treatment their FSH skyrocketed – something about an increased TFN-A….this is getting into immunity stuff now that I’ve never fully understood – I know a lot of IF blogs have talked about NK cells and intralipids and so on and it’s all been way over my head.  There is a doctor in California who is apparently the leading expert on all of this. In a desperate moment Friday, I filled out an online form for a consult with him but I’m not sure if I will be able to make that happen.

(4) The pain in my hands and feet and right arm/shoulder and lower back continue. Mostly at night and in the morning, but some during the day, too.

(5) I feel chemically depressed most of the time. I think I am going crazy. I went on an insane hair colouring frenzy – 5 appointments in 5 weeks to try colouring my hair in a drastically different way. I think I just wanted to try to become a totally different person because I am feeling so unhappy with the person that I am. Now I am going back on Tuesday to go back to something close to my original colour. See? I am nuts.

(6) My mammogram and breast ultrasound were both normal. (Small mercies.)

(7) The March Hare thinks we are also dealing with a PTSD issue for me, which no one has ever suggested before…he said we need to work on reducing my stress and then if that doesn’t help, explore removing the memory. Not sure what that means. Hypnosis?

(8) There’s been some talk on the Dr. WK board about Low-Dose Naltrexone (LDN), which had been prescribed to me by Dr. Click Clack last year and I stopped taking it in October before my treatment with him…I think I need to see about renewing my prescription to see if it helps. I’m taking everything else…why not?

(9) I’ve never been tested for Lyme disease, but I think I need to look into this. As well as a test for Rheumatoid Arthritis, which my mother had…scared of that one.

(10) My GP has finally referred me to an endocrinologist, but the earliest they can see me is November. (laughable, no?)

(11) Dr. March Hare has ordered an ultrasound and another round of bloodwork and I’m to go back to see him in a month.

(12) I sent Dr. WK an email the other day to see what he thinks of all my symptoms. No response yet.

(13) I’m trying to eat well and exercise and all that, but honestly I’m just so disheartened about everything I’m just trying to get by, mostly.

(14) I’m not really thinking about having a baby anymore. I’m sad that it never happened for me, and I’m jealous of women who are younger and fertile and all that, absolutely I am. I try not to be, but I am. I wish I was 25 again with my whole life ahead of me…I feel old and used up and like I’ve wasted a lot of my time and energy on the wrong things so I don’t have much to show for my time here – no baby, no big career, none of the things I thought I would have by now.

Thanks for reading this very down post. I hope my next one is brighter.

Hello, I am a Chemistry Experiment.

I feel like a beaker.

Hmm, let’s see what happens if we decrease her thyroid hormone, add testosterone twice daily, a dollop of progesterone at night and then a little melatonin/serotonin action.

Is she a normal freaking woman yet?

Sigh.

And more sigh.

I don’t know what is going on with me. I know it will take time for all of this to be sorted out but can I just whine for 5 holy minutes here?

I still have pain and stiffness in my hands (especially my right) and my feet. I *think* this might be pseudo gout (yes, there is such a thing – I looked it up) from my thyroid disaster. It’s getting marginally better, but it is still bad enough that I find it upsetting.  I am not sure about this 5-HPT stuff, so I’ve hardly taken any. WebMed advises not to take it until further research is done – uh, that’s a little red flag. I am taking one FemMed at night, which contains some 5-HPT. That, and my evening progesterone do seem to be helping me sleep earlier and better. Does anyone out there know anything about any of these supplements? 

I am still taking synthetic hormone, but trust that the new doc will get me on the natural stuff when I see him again in June. I have to go for bloodwork this week, which he says we both know will be “off”. Yeah, just a little.

So I just keep trudging along, hoping at the minimum to feel better, hoping to get my cycle back, and feeling rather ambivalent about having a baby now. Yes, I really said that.

(Those of you who are pregnant or raising young children can stop reading now. Infertiles and parents of older teens/adults can keep going…)

Because you know what?

When babies grow up, they become incredibly grumpy and difficult to live with. They question and argue with everything you say. They think you’re stupid and roll their eyes at everything you do. It may start when they’re twelve or when they’re eighteen, but it happens. And it’s not that they’re bad kids – it’s just the course of nature. And as hard as you try to understand that they can’t be your little baby anymore, it’ll break your heart. In the grand scheme of things, dogs are much better. They stay toddlers for their whole lives. 

Of course, this could just be my screwed up hormones talking. 

Maybe I am the one who is incredibly difficult to live with. Probably.

The March Hare in May

It’s been five weeks since my last post and about that long since I last checked in on many of you.

I’m sure I have missed a lot of your news, and I’m sorry for being MIA. I kept hoping and waiting to have something good to report and the days turned into weeks…

Not only have I not gotten my period, but I started feeling worse and worse overall. Then I had my thyroid checked (if you’ll remember, my TSH went down to 0.05 in January after my antibiotic treatment). As of April, it had gone up to 6! I was totally hyper. And feeling all the anxiety and panic and depression that went along with it. Plus hot flashes and body stiffness and aches and just not feeling right. I had been seeing Yu Ming for acupuncture/herbs and went a few times for massage therapy to alleviate some of it. And got in an appointment with Energy Man, who said I was “processing a lot”. Unfortunately, the new dosage of Synthroid wlll take 8 weeks to really make me feel any better.

And this, my friends, is where I hit my wall.

It’s been 10 years now since I was diagnosed with hypothyroidism and I’m sure it had gone undiagnosed for many years prior to that. I have seen 4 family doctors and 5 fertility specialists during that time and no one has monitored it as closely as I would like, nor have they suggested an alternate thyroid medication or referred me to an endocrinologist.

I happened to mention my thyroid issues on separate occasions to two women I know and they each suggested I see their doctor – the same guy – as he has earned a reputation in our city for being the go-to hormone guy for women. He is an integrative doctor – an OB-GYN – and he orders more thyroid tests than any other doctor in our province. He specializes in bio-identical hormones. They told me he charges an annual fee and that it would likely take a long time to get in to see him. I called and they had a cancellation so I got in within a few days.

Enter The March Hare. He is a lovely man and a renegade. I think he and Dr. White Knight would get along very well. 

The March Hare talks very quickly. He’s clearly brilliant and has much to say and 40 minutes is not long enough.

He gave me homework – reading, water-drinking, exercise, dvds, tests, and prescriptions.  He prescribed bio-identical DHEA drops – yes, drops!!! Apparently the other form of DHEA that doctors are prescribing makes things worse (which is how I felt on it)! He prescribed bio-identical Progesterone cream to take from the 15-30 every month. He prescribed 5HTP and FemMed to help me sleep at night. He ordered bloodwork for a couple of weeks from now. He ordered allergy testing (I have an appointment tomorrow). 

I told him I was just there to feel better and prevent bone loss, that I had given up on conceiving.

He told me he can absolutely make me feel better, but not to give up – one of his patients just recently had a spontaneous surprise pregnancy at the age of 47 after 12 years of IVF treatments.

I look forward to feeling better, and I’m curious to see how this plays out.

The tea party isn’t over yet.

Mission Follicles Aborted

Excuse the pun.

But, well, it is.

Sort of.

Sure, I’m still doing my best to eat well and take care of myself. There’s not a day that goes by when I don’t do SOMETHING I’m supposed to, like take a few wheatgrass shots or go to yoga or take my supplements or meditate or SOMETHING. Something proactive.

And I’m still seeing Yu Ming for acupuncture and taking my Chinese herbs 3x/day (the needles are still hurting, and I am feeling the effects of the treatment in my hands and feet – Yu Ming says this is because of the cleansing that is going on – the good news is that she believes it is very superficial, and we will get through it soon).

Plus I go see Energy Man when he’s in town (he said during the most recent treatment I had with him that he had to work hard to move my energy, but he got it moving).

But.

I’m just at the point where I have to let go of trying so hard.

My body is continuing to recover and heal from everything, and I can feel sensations of a period even though there is no bleeding yet. It’s the strangest thing, but once a month I have irritability, cramps, breast tenderness and so on, like my body is going through all the motions, but no bleeding. (Dinah, Dr WK’s other patient, describes the same phenomenon.) My hot flashes increase during that “period” and then decrease again the rest of my cycle. Yu Ming feels confident that my period will begin again soon. I believe her. She has many clients she tells me about who came to her in their late thirties and early forties after their period stopped, thinking they were in menopause. After a few months their period came back and continued into their fifties. I have faith it will come back for me, too.

Mr. H has finished his month-long dose of oral antibiotics and feels much better, too. He even thanked me for putting him through “all the torture” of the treatment.

So we are both feeling better and more energetic and I *do* think my period is going to return. We are even back to unprotected intercourse for the first time since October.

Then why would I stop the big push to grow follicles? Shouldn’t I try even harder now?

Sure, I guess I could kill myself to keep force-feeding myself more and more fruits and veggies (which I do some days, but some days I don’t) and spend more money to go to a Julia Indichova workshop or do her teleconferences or something (I have considered this, and who knows, I may still do it – the testimonials are pretty convincing and I do believe in the mind/body link). Or, once I get my period, I could look into IVF again.

But my gut tells me to just stop pushing so hard now. I think maybe if I’d gotten my period by now, I would have felt encouraged and pushed harder, but my last full period was in October, and I’ve only had 2 real ones in the past year. Sort of takes the wind out of a POF girl’s sails, you know?

And yes, I think it will come back. And I’ll see how I feel when it does – maybe I will feel differently and get back on the bandwagon with naprotechnology charting or who knows what.

But I feel like, at this point, I have worked very hard and climbed a big mountain of infertility. There have been a lot of setbacks and there is no pregnancy or baby, but here we are, anyway. Healthier than we were before. Maybe still a little fertile. Maybe not. Some may say we are too old (saw another ignorant news article this weekend about how nobody should have children past the age of forty because of the health issues children have, how aging parents suck, etc., etc.).

But for now I think we just need to coast for a bit and let whatever happens happen. Now that we can actually have unprotected intercourse, there is still the potential there…whether or not I have my period, too. It’s possible. The cycle that Dinah conceived, she just had a little spotting.

I’ll still keep taking care of myself, of course. This coming week I need to go get my TSH retested to see if my thyroid medication needs adjusting again. I will do everything I can to make sure things are optimum for conception, but I’m also going to *try* to relax about it, too. And my habit of recording everything and thinking about everything all the time is probably counterproductive to that. And let’s be honest…we’re kind of at the stage where there’s not much more to do but wait and see.

If When I get a period, I will go get my FSH/E2 checked on CD3 and I will request cycle monitoring to see what’s going on.

In the meantime, we are just going to move forward with our lives…I am pursuing some more education with regards to my artistic career (I figure if I can’t make a baby, I will make art). We are going on a luxurious beach holiday next month. We are thinking about other travel for this year. I am trying to convince Mr. H. we should get another dog. We will have lots of sex. We will drink fine wine. We will do what makes us happy.

And that’s it.

I’m not giving up or giving in.

I’m just going to “be” for now.

I will keep updating this blog with goings-on, but maybe not as frequently.

This is it, really…the soil is prepared as best as it can be, and we just need to see if nature shows up.

I rarely give instructions on what to comment on my posts, but please don’t tell me you hope I “find peace” or anything like that…I will never find peace with the fact that I’ve been TTC since the age of thirty and it has led me to this place. I will never stop wishing I had forced Mr. H.’s hand sooner so we had married and started trying sooner. I will never stop feeling like I’ve missed out and wondering what I could have done better/sooner/differently. I will never stop feeling angry/sad/disappointed/frustrated/punished. It will always be there.

I continue to hope. And I continue to have faith. But I also need to let go. For now, anyway.