One Year Later... Almost!

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:

1. 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.)
2. 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?

1. 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.
2. 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.
3. 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!

Life After Pregnancy: The Good, The Bad, & The Ugly

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.

All Good News This Week

Since my last post, I had to get blood drawn a second time just to clarify the level of sugar in my body. The nurse of my OB's office called and said everything looked normal this time. It must have just been a fluke that my sugar was off the chart last time, which I don't know why because I didn't have dessert that day. I'm happy to say that I am not diabetic!

To add to that good news, the Anesthesiologist finally called today. She wanted to know my situation with Ankylosing Spondylitis and being pregnant, then asked me a million and one questions about my health. She asked if I'd ever had surgery before, which I had about two years ago when a dermatologist discovered a severe abnormal mole that they thought was melanoma. Thankfully, it was not melanoma, but it was an outpatient surgery where they had to put me to sleep. I did not have any problems with the anesthesia then, so I should be fine.

She told me that overall, other than my disease I really am a healthy person. They should be able to do an epidural on me like any other "normal" person. But she also warned me that "normal" people can also have issues with epidurals because every person is different.

She explained that with my disease being in my SI joint/hips that they shouldn't have any problems because they will be going through my lower back. I expressed my concern with my back changing over the years since I have gotten diagnosed. She said it is possible and if I had any fusing that most likely I would know. Since I am young she doesn't think I have fused yet, that fusing usually occurs in older people as the disease progresses. She doesn't see a need in me getting an X-ray especially since it could harm the baby.

As we continued to talk, I learned a lot I didn't know about epidurals. She explained to me that it is never too early or too late to get an epidural unless the woman is literally already in the process of delivery. Some women get an epidural as soon as they are in a lot of pain and some wait as long as they can. She also explained that epidurals do not wear off unless they purposely make it wear off by turning it down or off. Once they do the epidural they hook it up like an IV. If at any point the pain changes or intensifies there's a button to push to make the dosage stronger.

I am definitely starting to feel a lot better about my delivery knowing that I can have an epidural. I'm still concerned with the idea of possibly having a flare after delivery. With my last flare I could barely  walk or take care of myself so I don't know how I'd be able to take care of a baby. (I know, I know. I have plenty of supportive people around me to help, but just the thought of being as useless as I was before bothers me. And just thinking about the amount of pain I was in makes me cringe!) But I guess we'll just have to deal with that when the time comes. Maybe I'll be lucky and I won't have a flare. (Fingers crossed!) I guess the good thing about being in the hospital is that I have a lot of people to take care of me and my options are not as limited once the baby is born! :)

Here's to hoping things continue to stay positive like this! Let the countdown begin: 29 days until my expected due date!

Taking the Good With the Bad

This week has been very interesting! At therapy they call me the "wild card" because no one ever knows how I'm going to be feeling when I go in that day. Last week I was doing really well, but for some reason all this week I've been struggling. I don't know why either because I haven't done anything differently? After leaving today, I am feeling better, but we'll see how long that lasts!

Stephen and I met with the Pediatrician last week. It was a lot of get to know you and your background stuff. Up until this week I was under the impression that I would not be able to breast feed while I'm on my medication and that was already up in the air because we have no idea how I would be feeling after delivery. I figured most likely I would need my medication after delivery and I would end up not being able to breast feed.

Well a couple of days ago, the Pediatrician called me with new information! Here is the good news: She talked to a lactation consultant who told her to look into Dr. Hale. I guess he is like a Guru when it comes to breast feeding and research on it. She explained to me that he has different levels of risks. Level one means there's little to no risk and level five means there's a huge risk. She told me that my medication (Enbrel - the injection) is a level two, mostly because my disease is not as common and so there's not as much research as there is with other diseases and medications. The biggest concern is if it were to get into the baby's blood, which if I took it now it would. I think she said there was like up to a 2% chance of that happening when breast feeding. Dr. Hale says that the mother could take the medication the same day as delivery, but my Pediatrician said she recommends I wait a week for the milk to build up that way there's less of a chance of anything making it through to the baby. She told me ultimately the decision is up to me, but she doesn't see it as being a problem.  

Also, I will be continuing the prednisone for a little while after delivery because that's not a medication you can just stop taking. People have to be weened off of it. She told me as long as I don't go above 40 mgs I will be fine to breast feed while taking this also. We'll just have to continue to monitor Jackson and myself like we have been doing all along.

(For any pregnant women reading this Dr. Hale has a website with all kinds of information. If you have a disease like me and want to know more go to Forums, then scroll down to Forums for Mothers with Special Conditions and it breaks it down into specific conditions. Click here Infant Risk.)

I had an appointment with my OB this week. Everything looked good with my ultra sound. Jackson is about 6lbs right now. I technically have a month until my due date so he still has plenty of time to grow a lot more! I already feel like there is no more room and I'm not that big to begin with! Here's the bad news: I had a lot of sugar in my urine. Being on prednisone it's somewhat expected. I took the test a while ago to see if I would be diabetic while I'm pregnant. I was surprised when they said I wasn't. But yesterday I had to get blood drawn and I'm probably going to have to take the test again because there was still a lot of sugar showing up in the results. This obviously isn't horrible news because I have about a month left and it goes away after I deliver, but I will have to change different things throughout my day.

To continue the bad news, I still have not heard from the anesthesiologist. I guess they have been having problems in their office so they haven't called to set anything up yet. So my delivery plan is still up in the air. And to add to that, I also have not had an X-ray or MRI since I got diagnosed, which was a little over 3 years ago so my back could have changed a lot between then and now. Pregnant women aren't supposed to get X-rays, MRIs, CAT scans or anything like that because of all the radiation. It's really hard telling right now what they could say about my back or what they'll be able to figure out without having an X-ray.

A lot of unexpected news this week, but that's the story of my life! I guess I just wasn't really expecting things to change with possibly being diabetic since I already took the test once, but I kind of knew in the back of my mind it was still a possibility because of the prednisone. I also was pretty sure I was not going to be able to breast feed while I was on my medication. And I definitely thought I'd have a little bit of an idea about my back by now.

Guess I'll just have to wait and see what next week has in store for me!

A Lot of Things to Think About

I haven't written anything on here in a while, which is a good thing because that means I have been doing much better so I don't have as much to say!

Every time I go to therapy Matt, my doctor, asks me to rate my pain level - 10 being the worst & 0 being the best. Last Friday was the best day I've had since I started going to therapy back in May. Even though I've been in some pain these past few days it's nice to know that getting myself to a 1 on the scale is possible. I'm pretty sure the things I do on a daily basis have impacted the improvement. I still take the prednisone everyday, I ice first thing in the morning, I wear my back brace, and I do my stretches every night before I go to bed.

Yesterday, Stephen and I went for a check-up with my OB. My OB had an emergency at the hospital so while we were waiting, her assistant came in and recorded Jackson's heartbeat and then put it inside a teddy bear for us to take home. I thought this was such a neat idea!

When my OB finally arrived we discussed my concerns with labor and how it will effect my back/hips. When I lean back, or recline, it places a lot of pressure on my SI joint which is where I get all my pain. There is also a lot of pressure here as well when I lay flat on my back. After sitting or laying like this, it's really hard for me to get up and to move. My OB and my Rheumotology doctor both say it is more likely for me to have a flare after delivery because of the drastic change in hormones. A flare will most likely occur within two weeks after delivery. I'm not really sure if there's anything that can set a flare off for me any day, but I want to be prepared and have a delivery that will produce the least amount of stress on my back/hips.

I think about how bad my flare was back in August and I know if that happens again I won't be able to take care of a baby because I can barely take care of myself when it gets that bad. I hope that in discussing all this I can at least be prepared and have a plan of what to do. The good thing is that once I deliver I will be able to take my medication again. But if I do take my medication I will not be able to breast feed. My OB says that at that point we need to focus on taking care of me and doing what's best for me because Jackson will be fine whether I breast feed or not. So what happens after I deliver is kind of up in the air because we don't know what to expect or how my body will react.

As of right now, I am waiting for the anesthesiologist to call and set up an appointment with me. They have to examine my back and check out my spine. If everything looks good and my spine is straight I can have an epidural when I go into labor, but if my spine is crooked I can't. Obviously, with all my back problems I want to have the epidural. Before I was pregnant I gave myself a shot once a week so needles do not bother me. If I can't have an epidural I'll probably have a C-Section because I don't want to deal with pain especially knowing I have a good chance of having a flare anytime after delivery. The only problem with having a C-Section without an epidural is that I will not be able to be awake for the operation and Stephen will not be able to be in the room. Of course my dad is always positive and said that that's not a big deal and Stephen and I will both get to see Jackson, even if it's not right away. He also said I need to do what's best for me, my back, and my health.

It's a lot to think about, but it needs to be addressed. I'm going to see what the anesthesiologist says and talk with my OB again before any decisions are made about my delivery as to whether it will be vaginal or C-Section. If I cannot have an epidural I'm 99% sure I'll have a C-Section. And if I can have an epidural I still may opt to have a C-Section. It just depends on what all happens these next few appointments. It's also possible that even though I am putting all this thought into it that I won't have a choice and I'll have to have a C-Section anyway because of how big Jackson gets from me being on the prednisone. At my last ultra sound he was measuring a little ahead so we'll see how big he is at my next appointment in two weeks.

Ending on a good note, today is the first day of November so I am now in the homestretch. Jackson's due date is in December so really he could be here at anytime now. It's been a long and tiring pregnancy for me, but it's almost over and I am excited to meet my little man!

So what's new?

I haven't posted on here in a while, mostly because I am doing much better! Yay! :)

So, you may be wondering, what's new? Not much. As of right now, I am still going to therapy twice a week. I'm going to my OB every two weeks. My last visit with my OB was a good one. Surprisingly, she told us that Jackson was a little small compared to how big most babies are at that point. He measured to be 2lbs 4oz. I'm sure with my next appointment he will be much bigger though. I'm also having ultra sounds at every other appointment. They want to monitor him closely since I'm still on the prednisone.

I've come to the conclusion that there are a few different reasons why I could have had my flare.

1. Medicine. The medication that I took on a regular basis before I was pregnant finally wore off.
2. Stress. Even though I did not feel stressed I had a lot going on at that time. I was working all the time, planning for a wedding, and had just bought my first car.
3. Weight gain. My back couldn't handle the pressure from the weight I was gaining. I've always been pretty small and this is by far the most I've ever weighed.
4. Gender. I read somewhere that pregnant women with
   Ankylosing Spondylitis have worse flares when they are having a boy. I don't know how much truth there is to this though.
5. Combination. Any and/or all of the above could have been contributing factors.

I definitely think the prednisone has made a huge difference in how I manage my days. Some days I feel great, but there are still days that I don't do as well. So I'm still taking each day one at a time! Just because I feel good today, doesn't mean that reflects how I'll feel tomorrow. I won't know until I wake up. I still struggle with the stiffness in my back. I've learned that walking usually helps with this. The more I move the more I am able to loosen up. It just takes me a while to get going sometimes. There are finally more good days then bad ones so I'll take it.

I'm happy to say that once I get past being stiff in the morning usually my biggest problem now is just heartburn. But that is just something that can be expected/normal like any other pregnancy. 

(Picture source)

 

Other than my flares, I have been pretty lucky. If I didn't have my disease, I'd say pregnancy has been pretty easy. Although I haven't gotten to the labor part yet so I won't completely jump to that conclusion!





  

Is the Honeymoon over?

I've heard people call the Second Trimester the "Honeymoon Stage" and this is supposed to be the easiest part of the pregnancy. Ironically, this has by far been the hardest part for me!

I'm happy to say that I think my Honeymoon stage is over! Although it is still a daily struggle with how my body wants to compensate with my disease. This past week my mid back has been the target. Since the prednisone is easing away my pain in my low back my mid back doesn't seem to know how to handle it, I guess.

It's almost always my left side that's causing all the problems. My muscles in my mid back have been extremely tight lately. They get so tight that the slightest bend, turn, or movement can trigger a muscle spasm. These muscle spasms are the worst in morning. When you sleep there's little movement so my back has plenty of time to get very stiff by the time I wake up. The spasms feel like the ones I was getting in my leg with my first flare, but in the middle of my back instead. My stomach has gotten really sore from my whole body tensing up when my back has a spasm. I have also only been able to lay on my right side because of the pain and spasms. This is causing my hip and thigh to start bruising from only laying on that side. 

When I went to therapy, he asked how I was feeling. I told him my lower back is starting to feel better, but my mid back has been very tight. He said the best way to help my mid back is to walk, but only if I feel alright. Usually, everyone can tell when I'm not feeling alright because I walk very slow and I walk with a limp/waddle. He said as long as I'm not walking funny I will be able to loosen up my mid back. But if I try to walk too much and I'm already walking funny it will make everything worse because I will only walk to accommodate the pain, which is the wrong way.

Luckily, I have been feeling better so I have been able to go for walks around the neighborhood Thursday evening, to run a few errands Friday and Saturday, and even walked around the mall yesterday. The walk around the neighborhood was a little rough as it was the start of trying to loosen up my back.

I've definitely had to pick and chose my battles and decide when I want to fight through the spasms. Some were so bad that it hurt my whole body from tensing up so I wouldn't be up long and would lay back in bed. Some were manageable so I would just walk laps around the house. Once I got past the really bad ones I was able to build up confidence to get out of the house to walk. I've definitely had to work at it and fight through it, but I can definitely tell pushing myself through it has been worth it. Today is honestly the first day I can say I almost feel back to my normal self. This is the least amount of pain I have been in in almost 2 months!

Supposedly, the Third Trimester is supposed to be the worst. Well, with what I have been through already and have overcome I say...

Bring it on!

 

Here's to already making it through a week and half of the Third Trimester :)