Medical Stuff · Multiple Sclerosis

A Bunch of Fertility Stuff and Some Whining About MS

Priming with Omnitrope (human growth hormone) and LDN officially began Wednesday night. I spent that afternoon engaging in some mild hand wringing, hoping that the snow “storm” in my area (aka, 1″ or less of snowfall) wouldn’t delay the delivery. After a small snafu with getting the Omnitrope mixed up since the pharmacy sent no instructions *whatsoever* I was able to do my first injection.

Sub Q injections are old hat for me. I had to do them daily for over 2 years when I took Copaxone to manage my MS. I’ve taken a couple of sub Q shots since starting TTC, Ovidrel and now Omnitrope and each time I reflect on how horrible the Copaxone shots were in comparison. I know for many people the fertility shots are very difficult and I do not mean to minimize very valid feelings about doing shots.

I know I’m on a tangent here but if you can imagine a shot that has a long needle, that is filled with at least 2cc’s of fluid and that literally burns going in, that’s what a Copaxone shot is like. Then, after the shot is done the site starts to swell and turn red. It feels like a bee sting. After that goes away (20 mins to a few hours), then comes the bruising. Imagine doing that every night for years. Considering that is my experience with sub Q shots I was almost giddy after taking the Omnitrope. And it also really validated how awful Copaxone is and how there is no way in hell I am doing those shots again. Even though it’s the only MS medication that is safe for pregnancy. Still not doing it.

Anywho, I am also taking LDN and I’m really hoping that this medication will help me get pregnant and also help manage the fatigue I have from MS. Lately it’s been substantial. I’ve had the mildest of colds you can imagine but any drain on my energy stores is enough to have a major impact on me. Getting out of bed is stupidly hard and I get so frustrated with myself. Ugh. LDN is sometimes used by MS patients to help with their symptoms so I’m hoping that I am going to get a two-fer with this one.

Which brings me to my TSH labs. My number was 3.8 which is technically still in range but high. For fertility they want it under a 2. Lower is better. So I am now also taking a thyroid medication for subclinical hypothyroidism. Also hoping that this will perk me up some and give me some energy as well as get me pregnant. Another two-fer, perhaps 🙂

Thanks for reading my stream of consciousness post. Mostly I’m just passing the time waiting for CD1 to show up so I can truly start the IVF cycle. I’m on CD 10 as of today, so I’ve got a little over 2 weeks to go. 😀   I’ve got an update about our known donor as well but this is long so I’ll save that for another time.

Stay warm in this weather, y’all. My city is basically shut down right now because a small bit of snow fell last night. Most places would scoff at our overreaction, but this is what happens when people drive in the snow in my city:  raleigh snow storm

Be safe out there!

 

Assisted Reproduction Technology · Multiple Sclerosis

CD 3 and a Kinda Sorta Decision

It’s a new cycle. K and I have analyzed and wracked our brains. We have crunched numbers and played out infinite hypothetical situations. We are stumped. If money was no issue then we would go with IVF all the way. So today I will go get my usual CD 1-3 ultrasound and the RE will be redrawing my labs to see if anything has changed that might point us in one direction over another. As a benefit these labs can be inputted into some sort of statistical analysis app that will give me some probabilities of conception from IVF based off of my personal stats.

If everything continues to look good on paper then K and I will move forward with one round of IUI. I don’t know what will happen after that. After spending this time trying in vain to predict and plan the future we have resigned ourselves to focusing only on the immediate steps in front of us. At this point those steps are:

1) ultrasound

2) labs

3) preparation for IUI

We have narrowed our donor down to 2 excellent options and we will make a final decision here in the next couple of days. Did I mention that K and I excel at taking our sweet time deliberating on decisions?! For better or worse we do not make quick decisions! Our A1 form has been provided to the doctor in order to ship the sperm and all other paperwork for the sperm bank has been completed. There has been some progress and a small decision made. We are content with that (mostly) for now.

I should have my labs back in a couple of days and if my AMH has dropped significantly or there are other signs that I would not be a good candidate for IUI then we will have to revise our strategy.

I also had an appointment with my neurologist yesterday and discussed TTC with him. It turns out that he actually wrote a book chapter on IVF and MS so I feel like I am in competent hands in regards to developing a safe protocol if I do need IVF. He also said some amazing things: “I am not worried about you being off medications TTC.” and best of all: “Your MRI has been essentially stable since 2014 so you don’t need an MRI this year, do it next year (2019).” Folks, I have had to get MRI’s every year for the last 6 years, sometimes more than one, and often with many different studies. It is not uncommon to spend 1.5 hours or more in the MRI tube. I am thrilled that I am stable enough to put it off for a year. 😀

I’ll update once I have my labs back and let y’all know if our plan has changed.

Multiple Sclerosis

Invisible Illness

Having multiple sclerosis used to be a big deal. I am coming up on 6 years since diagnosis and I used to reflect upon it with a lot of sadness. It was very hard to adjust to being “chronically ill.” Sometimes I get frustrated because having MS has limited me in some ways. And sometimes those limitations feel unjust because they are limitations that others put on me.

Like when I wanted to learn to SCUBA dive and my PCP made me put in writing that I understood that diving was dangerous and even more so with MS so that she would agree to sign the medical release for me. Or when I looked into getting a work visa in Australia and learned that they would reject my application based on my diagnosis alone.

Despite the fact that on a day to day basis you would never know I have MS, there is a subtle yet palpable loss of agency that comes part and parcel with this diagnosis. And sometimes that is difficult to reconcile when I feel absolutely fine. In terms of making a baby I have run into this a couple of times. For instance, I will be considered a high risk pregnancy. Though that could amount to nothing more than some extra scans and labs it also means my autonomy during pregnancy and birth is tenuous– it’s easier for hospital staff to override my decisions since I am high risk. A home birth is likely not possible.  It’s hard to accept that when I feel capable and strong.

Today I do not feel nearly as capable and strong. I feel frustrated. Because the combination of letrozole and underlying MS fatigue has me couched. Literally. It’s 11am and I have so many things I want to do. My mind is saying get up and get moving but my body wants more time to gather the energy. This internal struggle is maddening. And it gives way to doubt. Will I be a good parent even on days like these? How will I manage fatigue while I am pregnant if just the meds to get me pregnant have rendered me a useless couch polyp? And furthermore, will I survive the newborn phase or will I spend it in exhausted tears?

I am thankful that most days are not like this. Most days I feel fine, normal. I can pretend I am healthy 95% of the time. It’s just that 5% that smacks me in the face every once in awhile to remind me that MS is real, I am chronically ill and that I do in fact have limitations from it.