Crazy Dreams....

On the topic of crazy dreams, I have been having some very odd ones as of late.

Two nights ago, I had a dream that my daughter, who is three was on the bus going food shopping with my boyfriend and I, and we got off the bus, she was with us, but than when I looked behind us, she was not there. I remember saying in my dream how angry I was and how someone took my kid and nothing was worth it anymore. We strangely caught the person because they had withdrew all my money from the bank using my debit card, and they had cameras at the ATM and he also had used our food stamps... I was so happy to have my daughter back...

Last night, I dreamed I was pregnant 8 weeks... and I saw the ultrasound and Alex and I were very happy... It was there, and then I woke up, and it was gone. :/

Why does your body have to put you through such weird, emotionally intense dreams?

Unsure what my body is doing...

This is my FF Chart for this month


As you can see, it seems to be doing something funky. Fertility Friend doesn't seem to think I've ovulated yet.
I had some wierd spotting on CD24, but nothing since then.

Yesterday I went to go and check my cervical positioning and it was so high I couldn't feel it. I had watery cervical mucous, but my OPK was negative, and the pregnancy test was negative.

No idea what my body is doing, so I guess I get to watch and wait...

A Bit of A Rant: Fed Up with Doctors

Why do doctor's always have to be so condescending  That is what is wrong with today's society. They think their better than us because they have years of a degree completed where I have nothing but my AS in Medical Assisting and am seeking the pre-reqs for Nursing School. 

Another thing that bothers me is how doctors can't seem to agree on one standardized treatment with each other. This is regardless of the studies you slap in these doctors faces...

I had an appointment with my Hematologist on the 10th, and wanted to have her be open to the idea of me having Lovonox injections, if and when I fall pregnant. I wanted her to be open about this because of a few things.

The first being that my new high risk OBGYN wants me to have the Lovonox during pregnancy, and the second being that I would feel comfortable knowing I did everything to prevent my child from having said issues.

Whether or not doctor's choose to acknowledge my conditions as being real, they are real. VERY. REAL Just because I have not gone to medical school does not mean I can not look up an article or research on PubMed, or SNPedia.com, or these other websites doctor's use. Just because I don't have credentials after my name, does not make me DUMB.

My hematologist appointment was on the 10th, and Yes, yet again, I am thinking of changing hematologists. 

I think her concern has shifted from my Hematology concerns to my Oncology and keeping me cancer free concerns, which I can appreciate, but my Hematology and Clotting Concerns are REAL and they should not be bypassed, especially when you have issues in both Hem and Onc fields needing to be dealt with. Lately, I feel like since I am in remission, she could not give a crap about my Hematology issues, and that is not okay with me.

The reason for switching my Hematologist would be because she refused to acknowledge other clotting factors that 23andMe, a consumer testing company showed. 

My concern is that the clotting issues are very real in conjunct with my MTHFR Mutation and when you add the immune issues and the methylation issues into it, it composes a very complex compound situation. Which she also passed off as nothing to worry about. 

She said "Wow. Wow. This is a lot of information. Wow. you know the problem is that society is not ready to see all of this. You don't know what any of it means" 

I am sick and tired of being treated like I am dumb and don't know anything. I sit here researching for hours on end my conditions, and find loads of studies, waste printer ink, and then get told "Sorry, this is nothing to worry about" or "Sorry, this is not a valid test" Well, if its not a valid test, than re-run the test in your office...

As far as my Endocrinologist, I am going to give them a chance, I did just switch to them back in November. My OBGYN also is going to be given a chance... its just not that easy. I feel like I am rushed in and out, and not given the chance to "explain" my questions. 

I prepared 30 questions for my hematologist and couldn't even get to have her look at them because her negativity just turned me off. 

My RE, and Hematologist think that these things are nothing to worry about, and the need for Aspirin and Lovonox are not needed, but my OBGYN thinks that I need the Lovonox, and my PCP agrees. 

My Hematologist wants me to "wait to experience another loss after 12 weeks before getting treated on Lovonox" Really? I have had 5 miscarraiges, 1 chemical, and 1 stillborn at 23 weeks gestation (20 weeks measuring) So I'm frustrated.

I really like my Hematologist, but lately she has been giving me a vibe that she just doesn't care. Honestly, she seemed more concerned about my Anemia.

I prepared the 30 questions for her and the tests I wanted her to run, and she basically told me "Those are not needed. I question the validity of 23andMe, and these could not be legitimate results" Well, lets take a look at something.

These were the questions I prepared for her:

1. When I last saw you in October, my menstrual cycle was weird, and had not come in 70 cycle days, my primary care doctor had ran tests to see what was going on. One of those tests she ran was a Beta HCG to rule out pregnancy. The first test came back as a positive, but she wanted to repeat it in a week to see if the results doubled. The second test came back negative. That same day I started bleeding. When I asked my PCP about this, she said that my TSH was 5.0+ and that because my thyroid was so high and I was deficient in B12, and Vitamin D, that it had trouble implanting. It was secreting enough HCG to be considered positive in the first test. The second test was negative because the HCG had plummeted She called this a Chemical Pregnancy. What is that? Is that a miscarriage?

2. In November, I purchased a 23andMe test out of curiosity to see if the mutations matched up with Factor V leiden heterozygousy. They did, but they also showed Heterozygous MTHFR A1298C, so I seeked out specialists at MTHFR Support and they helped me analyze my 23andMe results. What came back concerned me greatly.

3. My High-Risk OBGYN through Elliot OBGYN is Dr. Thomas Antisdel and Dr. Thomas Barett. I briefly discussed my OBGYN and Hematology History with these doctors, and they recommended my partner to get a Semen Analysis done. He got this sperm analysis done, and we met with Fertility Specialist Danielle Vitello of Fertility Specialists of New England, and she looked at his results, and they looked normal. Dr. Antisdel and Dr. Barett both feel that I will need Lovonox during pregnancy. In doing research of my clotting factors, I feel it will be needed during pregnancy, and post partnum. Previously, we discussed post-partnum only. What are your thoughts, now that these new clotting issues are existing?

4. My partner came back Compound Heterozygous for MTHFR, meaning he has MTHFR A1298C and C677T for heterozygous mutations. I already know that I am MTHFR A1298C, what does this risk do for our “future children” do you know much about MTHFR?

5. Regarding MTHFR, Folate and Folic Acid should be avoided. I have been looking at a drug called Metanx, which has the following ingredients:

L-methylfolate Calcium (as Metafolin®)	3mg
Pyridoxal 5′-phosphate	35mg
Methylcobalamin	2mg

What is your medical opinion on this drug? Can you prescribe this?

Regarding medical history, in November 2012, I was officially diagnosed with Diabetes Type II, with my Synthroid being increased to 100mcg daily, and my Metformin being switched to the liquid form of Metformin called Riomet, which is 2500mg/25ML daily. I just thought you should update diagnoses in my medical profile.

6. My PCP has recommended that I take the 81mg of Aspirin daily due to the clotting disorders and also because some studies show that it can help assist with implantation. I have been taking 81mg daily, but unfortunately my OTC is about to run out, can you prescribe this, or is it in OTC only?

7. MTHFR is showing links to several health problems. MTHFR has shown issues with maintaining and keeping pregnancies, as well as high homocystesine levels. Can we run the lab work to see about these levels, since I don’t think that this was ever done.

8. The ability to e-mail a provider back and forth when I have questions is important to me. I know you recently registered through the patient portal, but when I send an e-mail to you, will you review this and return a response? It is important to me to gain patient repertoire when I have questions and things come up.

9. My daughter was seen through Dartmouth Hitchcock Clinic and had the same unfortunate treatment in care that I experienced. They brushed MTHFR and Factor V off as nothing to worry about with an atrial septal defect. She will be seeing a colleague of yours, Dr Sweeter, who specializes in metabolic, genetics, and hematology in pediatric areas on the 14^th, but I was wondering if you knew the chances of her having the MTHFR mutation, if her father’s history is not known? She has been found to have the Factor V Leiden Heterozygous, and the MTHFR has yet to be tested, as it is “not concerning” to the doctors who saw her. My daughter also has Aspergers Syndrome, a type of Autism, and MTHFR mutations are common in Autism Spectrum Disorders according to Dr. Amy Yasko. Should she be tested for these as well? We were being told it was nothing to worry about, even though her chance of stroke, clot, heart attack ect were higher with her atrial septal defect. Thoughts?

See Documents I brought along.

10. RE the documents:

Is it possible that Factor X is the reason that I have experienced heavy bleeding and early first trimester losses?

Reproductive Endocrinologist suggested a karyotype. What is the difference between a karyotype and a genetic test?

What is an HSG? My PCP and the Reproductive Endocrinologist recommended this. Can this cause any problems with clotting?  

These are all in my opinion, very legitimate medical questions... But she seemed to brush these concerns off... 

As far as the medical panel I wanted her to run...

Complete Blood Count, Reticulocyte Count, Serum Iron, Serum Ferritin, Serum

Transferrin (All to check on the anemia)

Vitamins: Vitamin B12 (to check if I am deficient in this) Vitamin D (to see where my level is with this) Vitamin K (if found deficient, can explain why I get the Charlie horses?) Folate – Metabolized and Unmetabolized Folic Acid Serum

MTHFR (Obviously we know that my 23andMe results showed I am A1298C, but would want to have an official test done through you, correct?)

Coagulation Assays (Since I am on Aspirin and it is a blood thinner, would you want to re-check some of the things you already checked that check if the blood is thinning too much? Also, would you want to do a full coagulation assay panel?

Factor X: Where I came back heterozygous for 2, and homozygous for one, can you run a panel associated with Factor X? Would this be the Clotting Factor X Assay? Also, can you run a test to see specifically what these mutations are called? Or would that be Factor X? Would you run the Factor X Assay, Low Factor X Activity, Thrombin Time, Prolonged Partial Thromboplastin Time and Prolonged Prothrombin Time?

Factor XII (12) – Would you run a Factor XII assay to see what the activity of my Factor 12 is? Since those mutations are both homozygous, can you tell me if the test for Factor XII would be the only thing needed?

Thromboplastin aka Factor III – What test can you run to show this mutation and what it does? There is little on this, other than it is a protein that helps in clotting and is CD142? Would a partial Thromboplastin time show what this factor is doing? Why it is also called tissue factor?

Factor IX (9) – Can you please run a Factor IX assay that would measure the activity of my Factor 9? What is the relation to Hemophilia B? If it comes back as abnormal, can we look at Hemophilia B?

Homocystesine Levels: I would like this one run because I wish to know what my MTHFR is doing to my homocystesine.

Cardiac CRP – Can you re-run this? My PCP ran this back in November, and it was extremely elevated. It was at 10.00 and normal was below 3. The concern is that it could either be high from inflammation or my risk of clotting is extremely high. Would this be high due to the Factor V Leiden?

Fibrinogen – Last time you checked this, it was slightly elevated. I am concerned with the possibility of Factor I, since Factor I was not included in 23andMe testing. So could we check this?

All legitimate medical blood tests in my opinion to be ran to check and see what was going on. Now, the thing that gets me here is this:

If the RE and the Hematologist both agree and think that Factor V Leiden and MTHFR are not the reason for the early miscarriages, but we know that I have mutations in Factor X, a study found on the National Hemophilia Foundation found this:

Women with factor X deficiency may experience heavy menstrual bleeding (menorrhagia), be susceptible to first trimester miscarriage or other complications during pregnancy and delivery

We already know I suffer with heavy periods, and have had many first trimester miscarriages. So why this should NOT be looked at as an option?

 Well, the Hematologist basically said "Wow, this is a lot. Wow. The problem with these tests is that society is not ready to accept what they mean, nor do they understand what they mean"

Am I incapable of a google search? Hello, these are dealing with MY GENES! Not anyone else's. MINE. So because I don't have some fancy smancy medical degree, I'm incapable of doing research and finding out what these mean?

Than she goes onto saying "I do not think you need to take Aspirin daily, I also do not think you need to take Lovonox injections during pregnancy until you experience another loss at greater than 12 weeks. If and when that happens, then we will talk about Lovonox"

So WAIT A SECOND. I should have to experience YET ANOTHER LOSS before your going to provide me TREATMENT?

That just makes no sense to me, and it is not okay...

So now I feel back to square one. Finding a doctor who is going to answer my questions and legitimately listen to me. Why should I have to keep firing doctors who are "medical professionals" when their supposed to do their job to begin with?

This will be the SECOND Hematologist I've "fired" and I am really at a loss, because I like her a lot. We already know that my OBGYN has been changed THREE times, and my Endocrinologist has been changed TWO times. I'm just really starting to get fed up, and wish my ARNP/PCP doctor could provide me care for all of these specialties. It is frustrating to me.

So I am going to sit here and think about it, and discuss my frustrations on the 17th with my Primary Care Doctor who seems to listen to my concerns about everything. Since my appointment on the 17th with her is to discuss "infertility" that is what I plan to do. Maybe she will run labs to check my hormones and all the labs I wanted my Hematologist to run... 

SEEKING: Supportive Doctor Who Supports My Wishes When We Become Pregnant

I just wanted to post another blog tonight about something on my mind.

A lot of times, being pregnant when your high risk is stressful enough, so I am trying to plan ahead of time. I am trying to find a doctor who will be supportive of my wishes to have a 100% natural, non-induced, water birth, and I have told people if I can not have that, than I will birth at home.

No, I am not crazy, but I am seeking someone who will be supportive of my wishes. It is my labor and delivery, and I did not get what I wanted for L+D with Gabriella, and you should never feel as though you HAVE to do what a doctor says just because they're a doctor. They work for you. Not the other way around. I've seen so many woman be bullied into birth experiences they don't want and so that is why I am so adamant about my wants/needs. I'm hoping its realistic.

I feel like just because I am plus size, and high risk, a lot of doctors want to automatically say "your high risk, you need to be induced or you need a c-section" It is my body, and what is an induction doing? Forcing my body to do something it is not ready to do. So... I continue to search.

I have found out that Elliot Hospital does water births, but that your OBGYN has to be really supportive of this, so I am debating on if I would want to go to Milford Birthing Cottage if they were willing to accept my case, and birth there.

I want a 100% natural, non induced, no drugs, birth and want it to be my way, and I want to feel empowered about labor and not fearful. What more could a woman ask for?

I realize I am NOT an ordinary case, with my clotting issues, and MTHFR and then of course the other losses I have experienced and whatever may or may not be wrong with my uterus, but if other woman who are overweight, diabetic, or have mutations and don't know it, can experience the labor they want? Why can't I? No, this is not me being picky, this is me making a decision because it is my body, my experience and my choice.

Fertility Specialist Reccomendations *The Actual Document*

So I am going to just post the document from the fertility specialist. I do have to call her office and fix a few things though, she missed that I no longer see Dr. Gudetti for Endocrinology, that I see another provider through Elliot Endocrinology, and she missed my date of birth (she put it as July 26th and I was born September 26th) and the last thing I have to correct is that she stated I was seen through Annemarie Fogerty for my stillborn which was not true. I was seen through Florida Cancer Specialists who handled Hematology-Oncology related cases, and then when I moved home to NH, I was seen through Norris Cotton Cancer Center, who misdiagnosed, and passed off my concerns, discharging me from their care, and now I am seeing Annemarie Fogerty, perhaps I am over-critiquing these notes, but I really don't like when doctors are incorrect in their dissertations.

Anyway...

The blackened out parts are addresses, and personal information such as social security numbers and date of birth. I do not want to have "issues" with people harassing me via my address, which unfortunately has happened, so I have taken the liberty to black out my information on a public blog.

I don't know whats up with my body these days *rant*

Okay really? Aunt flow decides to visit me after 23 days. 23! Not 30, not the typical extended cycle, but 23. That means if I *DID* ovulate, which I don't think I did, but if I DID that means my Luteal Phase was REALLY short. That is BAD NEWS. :/ I really don't know what my body is doing these days, but it bothers me.

*IF* I ovulated, I think it would have been on CD15, where my "dip" was, but unfortunately, my OPK was negative, so I have no idea what is going on.

Do you see the dip in CD15? But Fertility Friend is insistent that my ovulation occurred between CD11 and CD21, but I do not think if I got aunt flow today, that ovulation was even possible.

Very Very Weird right?

Anyway, I have to wonder if the issue is that I changed my diet recently, and I also have to wonder if the fact that I am dealing with my grief is why the change occurred  I am confused as what my body is doing, and it is very worrysome...

I will upload the reccomendations from my Fertility Specialist in a separate blog post, as I got her reccomendations today in the mail...

I have an appointment with my Hematologist and plan to discuss all these recent findings of clotting issues and MTHFR with her, as I feel my risk of clotting is much higher, but in doing research, one thing stuck out to me most, and I mention this because the Reproductive Endocrinologist/Fertility Specialist did not think that Alex's sperm count was bad, and thought it looked really good, and she also mentioned that my miscarraiges were far too early for FVL and MTHFR to have caused them, so when I found out about these other clotting issues, I did some research and found this:

"Women with factor X deficiency may experience heavy menstrual bleeding (menorrhagia), be susceptible to first trimester miscarriage or other complications during pregnancy and delivery."

- http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=188&contentid=52&rptname=bleeding

I have factor 10 deficiency, and I also have heavy menstrual bleeding, and have been severly susceptible to first trimester miscarraiges (as you know) so it just made me wonder.

Anyway, here is my chart for clotting:

Amazing how many clotting factors I came back positive for.

Anyway, if you have had a 23andMe test done, and are curious as to what your MTHFR Status is, and what puts you at risk, Please visit MTHFR Support, and contact a specialist who can analyze your genome, as they provide feedback. They charge $50 per hour in doing this analysis. The website is: http://www.mthfrsupport.com/

Also, if you have not had a 23andMe test done, please go to 23andme.com and take advantage of it! It has benefits of ancestry and health benefits, AND it is only $99! I bought mine in November and paid $299 for mine, so take advantage of it!

Anyway, thats my rant for tonight... I will scan the document from the fertility specialist and update it here in a separate blog post.

STRESS and Yet Another Annov Cycle it Seems...

Well, tomorrow marks CD23, and still no positive OPK. I am feeling a little down though lately, because things have gotten rough around here, financial  and employment wise, and stress-wise.

Stress from finances, and bills as well as additional stress from work (I was out of work 1 week due to tech issues and they kept escalating me to the highest tier of tech support, making me feel like I am dumb and know nothing, and then finally sent me an AIB work PC which would have solved a lot of problems months ago)

Stress from dealing with child custody nonsense (I now have to go to the courts tomorrow and proceed with my child support case and parenting plan, as Gabriella's father wants to try to take her from me, calling me an unfit mother, but yet I have raised her for 3 years myself, with no problem and he hasn't bothered with her in two years, and with that, I have to find a lawyer because this is inter-state nonsense, and its over potty training... really... potty training differences are the reason that her father is using as an excuse not to pay child support anymore)

Stress from Alex loosing one of his jobs (Alpine let him go because they claim he violated company policy by going to the ER on a black out day, when he tested positive for the flu, and the ER told him to stay out of work for a week) just stress all around.

It is making me feel like the combination of stress AND the combination of starting my new diet may be the reason I still am not getting my positive.

FF lists me as "possibly fertile" but I don't see any signs of that. I'm thinking of taking a break for a little bit again on the TTC train to try to get finances in order and be able to deal with grief and other health issues properly.

Tomorrow I meet with my therapist, and plan to talk through all these issues. On Tuesday, I have an appointment with my Endocrinologist, and than on Thursday with my Hematologist-Oncologist. I've been trying acupuncture to deal with my stress, trauma, and health issues, and I must say it has been helping me relax a lot more. There is an amazing clinic around here that lets you pay $5 a visit, which is nice.

I've had consults with MTHFR Support staff members about my MTHFR and my Genetic Conditions, and it looks like my methylation, detoxification, autoimmune and clotting issues make this for a very complex case.

I have been e-mailing back and forth between the team at MTHFR Support, and Dr Jess and Dr Tim agree that my case is a very complex case that needs work with specialists. I am hoping that when I get my tax return back in a few weeks, I will be able to get my consult with Dr. Tim because there are sadly no specialists in the area who specialize in this stuff.

I see my ARNP at the mental health center on the 15th, and it is a new nurse this time, as my old one left, and so I plan to talk to her about the MTHFR and the whole "lack of serotonin and other chemicals like dopa-mine  due to my MTHFR. Maybe she might be intrigued to learn more. I also hope that I can get some sort of medication to help me deal with this grief nonsense and feel better. My anxiety has been REALLY bad lately. I'm talking panic attacks about the smallest of stuff.

I do see my PCP on the 17th at 1pm, and hope to discuss all this stuff with her, especially where the Reproductive Endocrinologist I saw just passed this stuff off as nothing to worry about, but she did say she was going to set a long list of tests to be ordered, and I'd expect my PCP to order the HSG. Jess has always been really good with me though, because anytime I have concerns, I talk to her about them, and she listens, looks over the information I provided her with, and then gives an honest opinion. I have a long list of stuff to talk to her about, and I am hoping that she can help with all of them...

Alex and I also have to set up another relationship counseling session with our therapist and talk through the whole grief and loss thing there. We also need to talk about everything else that is going on because it is affecting a strain on our relationship.

Everything was and has been off due to the holidays, and I've been stressed and an emotional wreck. So I guess that might be why I am annov this cycle, who knows. But that's pretty much it for my rant today...

My Fertility Friend Chart for this month.