I've been a very busy mommy so I have not updated my blog in a while. It's so crazy to believe how fast this year has gone! Jackson will be a year old a week from this Wednesday!
Since my last post:
I am actually on prednisone again right now, but I am down to 2mg and almost done with it. You're probably thinking, "wow, she's been on that for a long time!"
Actually, I was able to start taking my injection medication, Enbrel, shortly after having Jackson. A few months after being on it, I had some sort of reaction to it that affected my hands. I stopped taking the Enbrel and I was able to heal. My Rheumatology doctor had me start a new injection called Humaria. Again, I was fine for a while and it came back. After being off the medication for a while and seeing a dermatologist,whatever it was finally went away.
I went without taking any medication for a few months when we decided to put me back on the prednisone to prevent a flare. Right now, I only have a few options of new medication and I'm currently trying to decide what to do.
My options:
- Take another injection which is similar to Enbrel and Humaria and could potentially cause the same reaction to the medication I had with the other two. (Enbrel was a shot once a week, Humaria was a shot every other week, and this new one would be once a month.)
- Start infusions, such as remicade, where I'd have to go sit at a hospital for a few hours every 6-8 weeks. (My sister who has Crohn's does this and it works really well for her.)
I'm not really sure what I want to do yet.
The million dollar question:
"Is Jackson going to be your only child because of what all you went through?" / "Are you going to have any more kids?"
To tell you the truth, I've thought about this a lot! Granted I went through so much pain for a few months, but I wouldn't change where I am at now. Jackson has been such a blessing and I cannot even imagine my life without him now.
Now that I know what I am capable of, I'd hate to let a disease control my life and not let me live the life I want to live. But
I think I could only go through a pregnancy one more time.
What would I do differently?
- I'd definitely try to be more proactive. I think when I started having my flare things didn't happen fast enough. I couldn't get into the doctor right away. I didn't get medicine right away. I didn't get my flare taken care of right away so it got really bad, really fast.
- I know every pregnant woman has their cravings, but I think I would watch what I eat a little better. The more weight I gained the worse I felt after having my flare. I gained 50lbs. If I would have watched what I ate better I probably wouldn't have gained as much weight.
- I think being more physically active would help. This would also help keep my weight down. But I would like to do yoga or water aerobics. Yoga would help keep my back from tightening up and water aerobics would help lift up some of the weight to relieve pressure on my back.
My Rheumatology doctor made a good point: Every pregnancy is different so if I were going to have another baby it may not be as hard for me. But it's hard to tell. Like I said before, I am not going to let a disease hold me back. I've found ways around all the problems I've had and I will continue to do so.
If you're wondering about Jackson, he is doing great. He's walking everywhere. I think he might even master running soon. He's even tried giving me heart attacks by starting to climb on things. Our families spoil him so he's a little rotten sometimes. He is healthy, smart, and growing like crazy!
My life has been pretty busy since my last post, obviously with labor, the holidays, and being a mommy.
The week leading up to my delivery, I had a feeling Jackson would be arriving soon because I started having pain in my lower back more often. I started getting a little concerned about how my labor would be with my back, but it ended up better than I expected. I could handle the contractions, but once my back started hurting too, I asked for an epidural. The epidural went well and didn't hurt in my opinion. The anesthesiologist said she didn't have a problem finding where the epidural needed to go, but she struggled a little getting through my tissue because it was tougher than most. I was in labor for about 21 hours, so needless to say I was exhausted by the time Jackson arrived.
If you're wondering how I am doing after pregnancy and labor, you'll be glad to know I have not had a flare! The main reason could be because I am still on the prednisone.
There are definitely some things I did not expect to find out after pregnancy.
The Good:
Jackson is finally here! I did not know it was possible to love someone so much! Jackson is healthy and growing everyday! He is a blessing and I am thankful everyday for him. Everything I went through was worth it. Being a mom is as exhausting as you would think, maybe even more so. You don't realize what all your body can handle (labor, breastfeeding, lack of sleep, a disease etc.) until you go through it.
The Bad:
I am still on the prednisone. I went down on the dosage this week and I will go down more again next week. No one is supposed to stay on prednisone for very long. I have been on it for roughly 5 months, which is entirely too long. The prednisone is keeping me from losing anymore of my baby weight which is taking a toll on my back. The plan is to start taking my regular medication hopefully next week and to be completely off the prednisone very soon!
The Ugly:
I found out this week that someone who has my disease should not be on prednisone for very long and that I should have been on the lowest dosage possible. My dosage should have only gone up to where it was if I needed it. Apparently, prednisone can eat away at your bones so, it is extremely important to take Calcium while on the prednisone. I drank a lot of milk and took Tums for heartburn while I was pregnant so that may have helped my case a little. Since I was on the prednisone for so long without being on Calcium pills, I got the surprising news that I am now High Risk for Osteoporosis. I definitely did not expect news like that!
I have to get a bunch of tests done again that I had to have done when I was first diagnosed with Ankylosing Spondylitis, plus some other tests. I also have to start taking Calcium (horse pills) daily. I found out that being off my medication (Enbrel) for so long could be a negative. I'm going to start taking it again, but it may not work for me this time around. If it doesn't work, I will have to find a new medication, which sucks because Enbrel worked so well for me before I was pregnant. I'm still very flexible which is good, but my Ank Spon doctor is concerned that I may lean more to one side when I stand up straight. He gave me the green light to start exercising again, but I have to ease my way into things.
I'm still going to therapy once a week. Therapy is still giving me restrictions for work, which is frustrating, but I understand why. I can't just throw myself back into everything after being out of work for 5 months and unable to do anything. He's also concerned with how I walk and stand with my right foot. My whole right side has been extremely tight the past two weeks (my disease is in my right SI joint). He said we need to work on correcting these things as well as work on my strength and core.
I have a feeling getting back to my old self is going to be a challenge, especially with all the news I got this week, but I know I can do it.
