Monday, August 13, 2012

Super Long Post Part 1: The Rash, Katmai, and Pumping

I can't believe its been 2 weeks since I last posted anything. Then again it pretty much has taken me a couple of weeks to even reply to most emails I get these days. I want to write about everything that's been going on, but I just can't bring myself to doing it. The more time goes by the more and more confused I feel about everything. And then there is still the anger, the feeling of being left out, left behind, the emptiness, and so on. Even the "what ifs" still consume me almost daily.

This is going to be long.................

Stupid Rash
A couple weeks ago I noticed this rash on my foot. This was when I was about 3/4 the way finished with planting my garden. Then the Wednesday before I was leaving for my weekend in Katmai I started seeing some red patches on my hands and it itched pretty bad. My first thought was that I must be having a reaction to something I planted in my garden because I had been working in it almost daily for a couple of weeks. I did some research and learned that a couple of the flowers I planted can cause a skin irritation and assumed that had to be it. I was freaking out because go fricken figure that I try to make a nice memorial garden for my babies and something bad comes from it. Just my luck I thought. By Thursday morning the rash had gotten worse and was now all over my hands and blistery in spots, on my left elbow, and down my left arm. I considered going to the Dr. to have it looked at since I was leaving town the next day. I even thought about the last time something didn't seem right with me and it resulted in my uterus rupturing and daughter dying. I didn't go in though and decided to just throw some hydrocortisone on it. Friday morning I woke up and had to finish getting ready so I could leave for my trip. The rash had now spread to a patch on my face and on both ears. Why didn't I fo to the Dr.?
I dealt with the rash all weekend while in Katmai wondering what it was and afraid to touch any plants for fear it would get worse. On Monday I was back at work and the rash was still looking red, mean, and still itching like crazy-the cortisone did nothing.
By the time I got off work the itching was so bad I decided to go to an urgent care. I get in to see the Dr. and he has absolutely no idea what it is. He doesn't believe it was caused by my garden though. Whew, but then what is it from? He had me get a bunch of blood work done and said he might send me to a dermatologist. Before I left he see's in my chart that last year around this time I got Bell's Palsy and asks me if I am one of those people that have all the weird or rare issues happen to them. Buddy you have know idea.
He had given me a steroid cream that seemed to be helping a little but I really wanted to know what caused this rash so I took it upon myself to make an appt with a dermatologist. I went in last Thursday and saw that Dr. and he is pretty sure it is this genetic disorder called porphyria. Oh and it is rare. Me get something or have something that's rare happen- never. From what he says it gets worse from being in the sun and its maybe worse now because my metabolic levels are all messed up from pumping. I don't think this makes sense but I am not a Dr. Also one of the best ways to keep it under control is to get a pint of blood drawn. Can we say fricken weird? He told me a few other things about it and then wanted me to get another blood test done. He hopes what he thinks this is, is it, and then we can work on managing it. Otherwise if he doesn't see the results he wants he might have me get a biopsy done to find out exactly what it is. He then gave me an even stronger steroid spray to use and informed that I might as well pump and dump all my milk until this gets figured out because this medication is not recommended for use with nursing. Before I left he then asked, like the other Dr., if I was one of those people who get all the weird disorders. I am thoroughly annoyed with all of this and wish the Dr. would call me with those results.

I went to Katmai Nat'l Park two weekends ago hoping for a fun little getaway. I knew it was going to be a little rough though because after all I am pumping and would have to coordinate hauling around a breast-pump and pumping while camping, hiking, going bear viewing, going on a bus tour, etc. I got it to all work though. It was a lot of dedication but I was determined that I could still go out and do things like this and still pump. Even though I did have to dump it all while being there at least I kept it up for when I got home and could start keeping it again- or so I thought.
The trip was a lot of fun and thank god I have tons of airlines miles that allow me to be able to get away on mini vacations like this. I do think though that if there was ever a contest of the weirdest places anyone has ever pumped before, I would win it. Try pumping in a gear shed and outhouse, with your only light at night being a headlamp, in a bear filled nat'l park and the only way to get to this place is by float plane. It was crazy, but I did it. The PA I work for even thinks I should write a story for a parenting magazine about it.
Also on this trip we took a bus tour out to the Valley of 10,000 Smokes. My seat mate on the bus was this little boy. I liked having him sit next to me, as I do love kids, and we chatted quite a bit. It wasn't until right at the end of our ride that this probably 5-6 year old boy out of nowhere asks me if it hurt when I had my children. WTF, right? Totally caught off guard I give this "ah,ah,ah" answer. He then asks if I have had my children. I hate saying no, but I did. I just didn't know what to say and really wasn't expecting this question to get asked. He then asks a few more questions about my age and if I am married and then moves onto when am I going to have my children and why haven't I had them yet. Crazy! 

Now like I said the pumping while camping wasn't so bad and I made it work. Now you throw in crazy, weird rash that I have no idea how I got-different story. It takes a lot of dedication to pump and keep my milk production up for donating and here I get this stupid rash that now makes me wonder if my milk is even safe to donate.
From the start I have recorded all my pumps down on paper with dates and the amount at each pump so that I would have a record of my own of what I have done. Once I started using the cortisone I made sure to record that on my paper as well to make sure I kept track of what milk was pumped after applying that as well as when I used the stronger cream from the one Dr. Now that I am using that new steroid spray nothing is getting recorded because nothing is getting saved. This all just makes me so mad that all my hard work and dedication is now going down the drain-literally.
However, a lady that I donated 30 ounces to shortly after Evelynn was born called me last Thursday though and was wondering if I was still donating. Her baby is now 5 months old and she really needs milk if I can give her some more. I told her I had 2-3 gallons in the freezer but wasn't sure of the safeness of it do to my rash and the creams I am using. I had talked to the milk bank about this and they weren't concerned about the rash but said some cortisone/steroid creams can get in the milk. Most topical things are normally okay for most babies I guess, but the milk bank is usually a little pickier since the milk can go to fragile NICU babies. I would hate knowing I sent anything to them that was potentially unsafe. This lady came on Friday night and took all that milk. It stills worries me a little but she is a midwife so I assume she would know if its okay to use. At least that milk did not go to waste I guess.
So for the past 4 days now since that appt and steroid spray use I have been pumping and it has all gotten thrown away. I went back and forth with what I should do now. On one hand if the rash goes away and I have kept the pumping up I can hopefully start donating again soon. On the other hand I have to quit eventually and this would be as good a time as any since the milk can't be saved so I can't feel too guilty about throwing the milk down the drain. Although if it wasn't for this stupid rash none of this would be of concern right now............
Thinking about quitting stresses the crap out me though. For one thing it has become routine. Routine was huge for me these past few months as it gave me something I had to sit down and do throughout my day and even night. Then there is the fact that I did this for my daughter. This is Evelynn's milk. It is because of her that this milk is even here for me to donate. Some might not understand why I ever decided to do this and others might not understand why I am having a hard time wanting to quit but you see PUMPING HER MILK IS THE LAST REAL PHYSICAL CONNECTION I HAVE WITH HER! It is her milk and it is going to help other babies thrive and once it dries up it is gone. My last real physical connection with my daughter will be gone and that makes me so sad.
I was stressing pretty bad about this on Friday. At one pump I would feel like "okay, I can do this. I can give this up. This is the most logical thing to do" and then at the next pump it was like I was a pump addict not being able to put the pump down. Who would have ever thought it would be so hard to quit pumping? I hate it even more that this stupid rash is what brought this all on.
I have decided though to start slowly weaning. I went cold turkey after Liam passed and that was just damn uncomfortable. I have been slowly trying to cut back on the amount I pump. The last 2 days I was stopping at 5 ounces a time versus pumping until they were drained and figure in a day or so I'll drop down to pumping only about 4 ounces and so on. Last night was also the first night that I did not get up during the night to pump. I haven't not gotten up during the night since I first started pumping. My boobs hurt so fricken bad by morning! I only pumped about 5 ounces this morning, which they could've let out so much more but it was enough to take a good amount of the pressure off. I hate this:(


  1. No words of wisdom for you. Sorry.

    I think of you often and check back daily.

    Praying/talking/screaming that whatever God/karma/spirit out there finally starts sending positive realities your way. Hugs to you.

  2. Hey Becky,

    sending you love. I get a very similar blistery thing on my hands and feet every summer. Drs don't have a clue what it is and I've never seen a dermatologist so it may be something different. It's most annoying and steroid creams don't seem to help. It may be that they wouldn't give me a strong enough one though. I find that a Citricidal wash twice a day can help. You should be able to find it in healthfood shops if you are interested in giving it a go.

    Hope things are on the up for you. You truly deserve it.

  3. You should write about pumping for patenting magazine - your story amazes and inspires so many of us in the Baby loss community - I'm sure you would really inspire people who struggle with nursing or pumping. Because you have taken your heartache and grief and are doing good with it ... Something not many people do.

    That little 5 month old is so lucky she got all of that milk. Your babies sure have an amazing mama

  4. I'm usually a lurker here, but I just wanted to send my love. And tell you you are one amazing mama...
    Also: the rash you describe kind of sounds like hand foot and mouth disease. It's not very common in adults, so maybe that's why your doctors are not recognizing it, but perhaps your immune system is still a little compromised postpartum. In any case, google it and some images of the rash, and ask your doctor if this could be it. If it's handbook and mouth disease, the steroids shouldn't really help.

  5. I think you are incredibly strong and brave and donating your milk is a wonderful thing to do. I really admire you Becky.

  6. Becky - you are amazing! Your dedication to pumping is so selfless and your "addiction" to it makes sense. Best of luck to you as you go through the weaning process. I am sure it will be tough and emotional, but with all of the terrible crap you'be been through, I know you can make it through this. And you have the joy and satisfaction of having helped so many helpless babies along the way. I think of you daily and check your blog often. Thanks for the new post(s). Sending hugs your way!

  7. Glad you had some on fun on the trip, I hope the rash goes away and the weaning process gets easier.xoxoxox

  8. I'm glad you were able to get away for a little bit! That is so strange about the rash. Thinking of you.


Related Posts Plugin for WordPress, Blogger...