Sunday, March 4, 2018

Hormone Replacement Therapy

Well hello everyone! I promise I haven't forgotten about this blog, I've just been rather absent from writing lately. I've actually been really feeling under the weather, and am only starting to feel a little bit more like myself in the last few days.

So, if any of you have been following my blog, you would know that I had some extensive hormone testing back in October. It was just a check in with my endocrinologist, and the results were posted in my last blog. Th results of my hormone testing showed that my pituitary and hypothalamus don't properly communicate with one another... although both parts of my brain technically "work." Both my endocrinologist and another specialist that I saw in January both think that Herman (my brain tumour) is intercepting all the important intel that is supposed to freely run between the two parts of the brain.

I also had MORE hormone testing (because, who doesn't love getting blood work done), which had some concerning results. My estrogen is pretty much in the toilet, almost to the point where it wasn't registering on the charts. My progesterone levels were also pretty stagnant, which means that my body isn't ovulating properly.


Overall, my body is confused and not functioning properly in terms of hormones. My levels are VERY low, which does unfortunately coincide with my diagnosis of hypopituitarism. My endocrinologist highly recommended that I start hormone replacement therapy, to help my body function the way it should.

Now, let me tell you... I was NOT overly thrilled about this idea. There is inconclusive research that shows tumour growth can be exacerbated by times the body creates more hormones (such as puberty and pregnancy) and I was concerned that starting these medications would mess with the tumour issues I already have. However, my physician reassured me that she did her own research, and concluded that the risks of me NOT being on hormones far exceeded me being on them (let me remind you, my docs believe I will be fully osteoperotic by the time I'm 40 based off my crummy hormones).

SOOOO... I have started the hormone replacement therapy and man, does it SUCK. I get to wear a little patch (pictured below) and I change it every 3 days. The side effects have been very undesirable. Ladies, think about how much PMS sucks (and men, if you're still reading think about your ladies and how they are when they're PMS'ing...) Now, I've had persistent PMS symptoms for well over 3 weeks now. Really sore boobs, bloating to the point I look pregnant, back pain, hot flashes, an increase in the severity of my headaches and skin irritation to where the patch has been applied. It's kinda hell. Oh, and I also cried when I dropped a peanut butter cup because my mood swings are as unstable as Brad Pitt and Angelina Jolie's relationship.

I've spent some time feeling sorry for myself, and I think that's okay. I'm frustrated. I'm uncomfortable. I'm in pain. I don't want this. I don't want any of it. But unfortunately, it's something that I have to deal with. I was pouting in the car and my boyfriend asked me,

"Would you rather have all these symptoms, or have bones so brittle you can't do anything?"

And I immediately answered,


I don't get that option though, so I need to deal with the cards that I have been dealt. It could be worse, but I also have to be kind to myself and remember that I am allowed to grieve the fact that this diagnosis kinda sucks.

Anyways, I have been in contact with my endocrinologist to see if I could be placed on a lower hormone dose, just because they did place me on the highest one possible... so here's hoping they can help me out!

Go forth and conquer your day friends, you can get over any obstacle put in your way!

- Court

Monday, February 5, 2018

Taylor's Story

Thanks everyone for tuning into my first post of 2018. This year I decided I really want to focus on community and personal stories from people living with Neurofibromatosis. The first story I want to share with you all is of Taylor! Please leave encouraging comments, and support a fellow NF'er! 

        My Name Taylor, I am 20 years old and I was diagnosed with NF when I was born. NF runs on my moms side of the family, my grandmother, brother, uncle as well as my mom have NF.  For me I would never change having NF I think it has made me a stronger person. I have had countless surgeries on my right eye. It is has been de-bulked, laser surgery, and then put in a frontal  sling. I remember being a kid and I would always had a hard time getting along with people because I was different and I  didn’t look like every one. I was bullied a throughout school. I would have nights where I would just cry my self to sleep because  I would just be so tired of feeling different. But every year it got a little bit easier, since everyone I went to school with started to accept the fact that we are all different and it was okay to be.

         I think the worst year for me when was in elementary was when I was in grade 4, the reason why is that I think that was there year where everyone started to find them selves  and who they were. For me I had no idea who I was and I still was getting comfortable on being different. From what I recall my eye was still not looking the greatest and it was still sitting pretty low. This was the year that I was bullied the most by a handful of people in my class. What ever I did it wouldn’t get better or it wouldn’t get worst. I just kinda let it run it course and it eventually stopped. I don’t know if it was because if they got bored or if it was because I stopped caring

        When I go into jr high i had the chance to go to Camp K, in Salt Lake City, Utah. Going it allowed me to meet people who had the same struggles as me and just for one week out out of the summer, I was able to just be my self and where I didn’t need to worry about what people thought of me. I went for 2 summers and they were probably the best times I could ever ask for. Even though I am not close with the people who I went to camp with, I still consider some of the greatest people I will ever meet. I find that with having NF and you meet people who have NF as well your connection and bond happens so fast because you already have something in common and you are able to talk to people and here their experiences with it.

           I think Jr high was also the worst years of my life. In grade 7 I had all of my friends from elementary and we all were super close but then towards the end of the year, I don’t want happened something just changed and this one girl just started to treat me like absolute crap and started to tell me that I don’t belong with them and I couldn’t be friends with them. It was like she was the ring leader and everyone followed her and they just started to tell me, how such a horrible person I was. That went on for months, but the time the year was over I had  two people come to me and say that they shouldn’t have listened to her and one of them became my best friends and to this day she still is.

          I remember when I was in grade 8 I got to the point where I was tired of people always asking me questions, so I decided to make a presentation on NF to explain it to everyone, so I would just need to say it once. But once when I was done and I needed to present it to my class I forgot how much I hate public speaking and to this day I still do.  After me speaking in front of my class I didn’t look different to them anymore, they looked at me almost like I was normal to them. For the rest Jr it was pretty easy because we never had anyone knew what I had and they didn’t care.

        As high school was approaching I don’t remember if i was excited or nervous..  I think it was a bit of both. I was excited for the fact that I was able to be more independent, as I was able to drive and no longer to take the bus. But I was also scared just because I know how people can be, and how terrible they can get. But all and all it was pretty good.

         In grade 10 is when I had surgery, this surgery is where they put the frontal sling it. The sling sits right above my eyebrow and it allows it be lifted so my vision is not going to be effected. But since Calgary is so dry, my vision has always been an issue. But for it being my first year in high school I  didn’t want to miss anything, because my fear was falling behind and failing my class . so I went back to school way sooner then I should have. The rest of high school was pretty easy. We still had issues with my eye being dry so we started to try to find ways to keep my eye not as dry. We tried restias which is a drop that I still use but I’m terrible for using because I don’t bring them with me where I go and I  just forget to put them in general. Other thing that we use and I find that it helps the most is plugs, it just gets placed and you tear duct and it helps retain the moisture in my eye.

        Now being  out of high school and working full time. People only ask when it is super noticeable. About a year ago I was hanging out with friends, there was a moment of silence and my one friends looks at me. and he asked me what was wrong with my eye but when he asked me, he said he never wanted to ask but the wanted too , since we became so close and he just wanted to know.

        I’m going to be forever thankful for having NF I am able to teach someone almost every other day about NF. I have my days where my eye won’t bother me at all and it looks completely normal.  But then I have my days where it is super dry and it just looks painful. In the end my eye is my biggest with having NF. And we still are trying to figure something out that is going to help my eye and not to make it look so dry and painful. 

Tuesday, December 5, 2017

Health Update

Who wants to talk about weird hormone problems?! If ovulation and hormone issues make your tummy churn, this blog post is not for you!

I've always had hormone issues, and I think it's safe to say they've resulted from my pesky little friend Herman the brain tumour. Herman is a little jerk who has set up camp on my hypothalamus, and has done a particularly good job at messing things up. I was diagnosed with hypopituitarism in 2011, which means that my body does not make enough hormones. Particularly, my estrogen, progesterone, LH and FSH have been impacted.

In October I had extensive hormone testing done to see whether or not this was still the case. I had the GnRH study done, which meant I was given a synthetic hormone to see whether or not my pituitary and hypothalamus respond correctly. I had this test done about 8 years ago, and it showed that my hypothalamus and pituitary do not properly "communicate" with each other, which means that the proper amount of hormone is not being synthesized. This time, the tests STILL showed that my hypothalamus and pituitary don't want to talk to each other... I think Herman is intercepting all the important intel.

The tests also show that my estrogen levels are still low, which isn't really a good thing. Estrogen is vital for bone health in women, and my endocrinologist is concerned that I haven't been on any form of estrogen for quite some time. I got sent for a bone density scan (let me tell you, Alberta Health Services does not make this easy if you're under 50) and got the results back last week. The scan showed that my bones are right between being "normal" and "slightly abnormal". Confusing, right? Well let me explain:

When you have a bone density scan, you're given a score and it compares your bones to the bones of those around you who are your age. A score of -1 and higher is normal, a score of -1 to -2.5 means you have low bone density, and a score of -2.5 and lower means you likely have osteoporosis. My score was -1.

So what are we going to do about all of this? Well, I need some more blood work done. My endocrinologist wants to send me for weekly blood work for 8 weeks to see if I ovulate, because at this point we aren't sure that is happening. Some more testing needs to be done as my anti-mullerian hormone level was extremely high, which either means I have polycystic ovarian syndrome (which they don't think is likely) or because I don't ovulate (which is the going theory). After that blood work is done, I'll be starting on estrogen replacement therapy, as the endocrinologist thinks I will be osteoporotic by the age of 40 if we don't get on this now. I'm getting a referral to a reproductive endocrinologist in the new year just to see what my options are for having kids in the future (let me repeat that very important word... FUTURE). I'm also getting a referral to a medical geneticist just so I have someone to keep an eye on all my NF issues.

So, there you go! There's my latest health update! This will also be my last blog post for 2017 so I hope you all have a very Merry Christmas and a fantastic New Year! Thanks to each and everyone of you who read my blog this year, it means so much to me!

- Court

Monday, October 30, 2017

Recovery is Always a Choice

Hi! I've recovered, and to some degree, am still recovering from a eating disorder. It may or may not be well known to some of you, but I struggled with anorexia and major depression for five years. At the time my journey with mental illness developed, I felt like my life was in shambles. I had just been diagnosed with an inoperable brain tumour, hypopituitarism, growth hormone deficiency, chronic headaches, ribbon rib deformity, scoliosis and tumours had been found in my abdomen, pelvis, arms, legs and ear.

Anorexia and depression robbed me out of five years of happiness. I did not "choose" to have an eating disorder, just so we're clear. It kind of just unintentionally evolved from my desperation to cling to some element of control in my life. With all the health issues that I was facing, and all of the uncertainty and unpredictability, food seemed like the only safe element of my life. I wanted to control something so desperately, I didn't even care that the control I was clinging to was slowly leaching the life right out of me.

Anorexia destroyed any bit of self confidence I had in myself. It destroyed relationships I had with friends and family. It made my hair fall out, my skin to take on a permanent grey colour, and to make my blood pressure so low that simply standing up made me want to pass out. Despite the physical, social and psychological manifestations this disorder brought on, I was reluctant to change. It took me five years to realize that this illness could very well end my life.

There will come a time, (like the time came for me) where you have to choose to let go of whats destroying your life, even though it will destroy you letting it go. Anorexia had become an identity to me. It allowed me to retreat to this place in my mind, where I didn't have to cope with what else was going on in my life. Letting go of my eating disorder meant that I had to own up to the fact that I was struggling with my other health issues, and accept the fact that my genetic condition would likely lead me to a life of uncertainty.

Healing and recovering from mental illness doesn't mean that the damage it has caused is gone and forgotten about. Instead, healing means that the pain and suffering no longer has control over your life. Remember, mental illness is never a choice, but recovery always will be. Recovery won't be easy, trust me on that one. But it will always, always, always be worth it. Recovery is slow, and it can be painful. Don't be the one to stand in the way of your own success.

I just want to leave you all with one more thought. Through the process of recovery, I've learned that it will take time to love yourself  and that's okay. I still don't think I am there today, but when I look in the mirror and look at the person I have become, I'm comforted by the fact that I fought like hell to become her.

- Court 

Tuesday, August 29, 2017

Preimplantation Genetic Diagnosis

Did you know that Neurofibromatosis is an autosomal dominant genetic condition? That means that people with Neurofibromatosis have a 50% chance of passing it along to their children. Dominant inheritance means that only one abnormal gene from a parent is needed to cause disease. This happens even when the matching gene from the other parent is completely normal and healthy. The abnormal gene "dominates" the normal one.

Pregnancy can be a scary time for families, especially when there is a risk of passing along a genetic condition to offspring. Neurofibromatosis is an extremely variable condition, and just because one person in the family has a mild case, does not mean that their offspring will have the same manifestations. One case may be mild, one severe, the next barely noticeable. One family member may suffer with learning disabilities, the others may not. Some may suffer with relentless chronic pain, others will deal with persistent feelings of numbness and tingling in their extremities...

When it comes time to having children, couples who have known cases of NF should be seen by a genetics counselor. A genetics counselor will assess risks associated with pregnancy, and will offer different kinds of services to help with maternal well-being. One relatively new "service" that is available to couples is preimplantation genetic diagnosis.

Preimplanation genetic diagnosis is a technique used to detect genetic "defects" within embryos prior to implantation. This can not only be used for couples who have known  chromosomal disorders (ex: NF), but also for couples with sex linked conditions (ex: hemophilia), carriers of single gene disorders (ex: cystic fibrosis) and women who have had recurrent pregnancy loss.  

This process is done in conjunction with  in vitro fertilization, and is a little bit tedious. So here's how it's done: 

1. Egg retrieval and fertilization occurs in a laboratory 

2. Five days after the embryos are developed, several cells are microsurgically removed from the embryos. The DNA of the cells is tested to see whether or not the "problematic" gene is present in the embryo. 

3. Once "healthy" embryos are discovered, they are implanted into the uterus through the process of in vitro fertilization. 

Sounds pretty simple, right?! Well this process can be pretty lengthy... it can take 4-6 weeks to complete one cycle of IVF. The genetic testing takes 1-2 weeks minimum. Then you have to take into consideration all the appointments you need to be scheduled for... it can take a while! Also, this procedure is relatively expensive. One round of IVF can cost $10,000 - $15,000 and then the genetic testing can tack on an extra $4,000 - $5,000... IVF is also not guaranteed to work and couples may need several rounds of treatment before they are successful. 

Now I tried finding some statistics for you all on how "guaranteed" this procedure is, and from the looks of it, it seems pretty darn reliable. Since only the unaffected embryos are implanted, you are pretty much guaranteed to avoid the gene you are trying to avoid. However, other genetic variances may still be passed onto your child... this technology does not prevent all genetic anomalies. 

This technology still remains relatively controversial in the medical community, and many people have many different opinions on the use of it. It has recently gained some traction in the media for allowing people to create the "perfect designer baby", but keep in mind that it can be used for MUCH more than that. 

- Court