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!
Wednesday, November 21, 2012
Friday, November 16, 2012
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!
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!
Thursday, November 1, 2012
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!
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!
Friday, October 12, 2012
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.
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.
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.
- Medicine. The medication that I took on a regular basis before I was pregnant finally wore off.
- 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.
- 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.
- 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. - 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.
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!
Monday, October 1, 2012
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...
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 :)
Sunday, September 23, 2012
Well That Didn't Take Long
It's been a rough week. I tried really hard to manage without the being on the prednisone, but I only lasted a few days. I only felt better on Tuesday after therapy which is when I wrote my last blog so I was trying to be optimistic.
On Wednesday I was back to how I was feeling before. Thursday was even worse. I started losing my appetite so I kind of had a feeling I was going to be having a flare again. And I was right. Thursday night I could barely get around the house. I tried doing everything I could even though I was in a lot of pain. I tried stretching, icing, took a shower to relax, used a softball to loosen up my muscles, but nothing was working. I finally went to bed hoping I would feel better for my appointment in the morning.
Oh boy was I wrong. Friday morning I was so much worse and I felt like I was very close to making my way back to my worst point of my flare that happened about a month ago. Thankfully, I had an appointment with my OB Friday morning. Everyone was working and I didn't know how I was going to make it to my appointment; I could barely manage to get around the house I didn't know how I was going to drive myself or walk to get to my appointment. Fortunately, my father-in-law was on vacation and was pretty much my chauffeur all day.
My ultra sound was the first part of my appointment. I pretty much have an ultra sound almost every time I go because of my autoimmune disease so they can monitor me and the baby. The nurse noticed I wasn't doing so well and helped me slowly walk back to the room and up onto the table. I dreaded laying on my back becasue any pressure to my SI joint makes it so much worse especially when I'm already hurting. Sometimes it helps if I bend one of my legs. This helped, but only a little bit. My father-in-law definitely enjoyed getting to see Jackson during the ultra sound. Unfortunately, I didn't get to enjoy it as much as he did. As I was laying on my back, I began overheating. My skin felt very hot and my face began sweating. It also didn't help that she was pushing on my stomach. Once she realized I wasn't feeling well she quickly finished up. She helped me walk to the room for my next part of the appointment and got some water for me.
The next nurse walked in and said,"I heard you're not doing so well. Will you be able to let me check your weight and give me a urine sample." I sighed because I knew it was going to be a task and told her I would try to do what I could. She helped me walk to the scale and stood outside the bathroom door just in case and helped me walk all the way back to the room.
At this point, I was in even more pain. I had definitely aggravated my lower back from all the activity. While I waited for my doctor to come in the room I had to literally lean to the right side the whole entire time to put as little pressure as possible on my left side.
I think by now the whole office knew I was struggling. The first thing my doctor said was, "I heard you're not doing too well." Originally my Rheumatology doctor proscribed the prednisone for me so he's the one that decided the dosages and how to taper me off. I informed her that I had been off the prednisone since Monday and that I started having a flare the night before. She basically told me that I wouldn't be able to manage without the prednisone and that I would need to be on it the rest of my pregnancy. I was okay with that because she was right.
We discussed that with me being on the prednisone the rest of the time that Jackson and I will both definitely be much bigger than if I were not taking it. Apparently there is also sugar in prednisone so between the weight gain and the sugar I will most likely be a pregnant diabetic. I guess this is also common and they usually test pregnant women for this anyway. I drank the really sugary drink so I could get my blood drawn for them to do the tests.
I had to wait an hour before I could get my blood drawn so my father-in-law and I drove across the street to the CVS to get my new prescription filled. By the time we were done at CVS and getting my blood drawn it was time for my next appointment with therapy. My doctor at therapy also could tell I wasn't doing so well.
I was already in pain because of my flare and I had a pretty active morning so it was really hard for me to get around at this point. He asked me different questions trying to find the root of my problems. Where does it hurt? Does it hurt more when you push off with your left leg? Does it hurt to lay a certain way? What does it feel like if you bend this way? He'd push on different muscles and then have me walk to see what made me feel better after each time. This time he actually pushed on my lower back directly where it hurt. I know as painful as it was he was actually helping. I just wouldn't see the affects of it that day.
By the time I finally got back home I was so physically drained. I still felt pretty bad that night. Saturday morning I woke up and felt so much better. My father-in-law said he could tell I felt better because I wasn't moving as slow and the expressions on my face looked so much better. I still was in pain on Saturday, but I noticed a major improvement.
What surprises me is how I can go from one extreme to another in a matter of no time. I felt like 75% better yesterday, but this morning was a different story. From the moment I woke up I knew it was going to be a bad day. Just laying there my whole left side was in pain. I've been up since 6:30 am because I was so uncomfortable I couldn't go back to sleep. When I finally got the courage to get out of bed I got breakfast and took my medicine. It's almost 1pm and I am just now starting to somewhat feel better.
It's very frustrating having an autoimmune disease that can be so unpredictable, especially when I have medication I can take to make me feel at my full potential, but I can't take it now. It's hard to mentally and physically prepare myself for a flare. It's also very draining. When I feel that bad it takes a lot out of me. It's also frustrating struggling to get around and feeling so helpless. I'm hoping that being back on the prednisone things will start getting better. It's definitely a wait and see process.
On Wednesday I was back to how I was feeling before. Thursday was even worse. I started losing my appetite so I kind of had a feeling I was going to be having a flare again. And I was right. Thursday night I could barely get around the house. I tried doing everything I could even though I was in a lot of pain. I tried stretching, icing, took a shower to relax, used a softball to loosen up my muscles, but nothing was working. I finally went to bed hoping I would feel better for my appointment in the morning.
Oh boy was I wrong. Friday morning I was so much worse and I felt like I was very close to making my way back to my worst point of my flare that happened about a month ago. Thankfully, I had an appointment with my OB Friday morning. Everyone was working and I didn't know how I was going to make it to my appointment; I could barely manage to get around the house I didn't know how I was going to drive myself or walk to get to my appointment. Fortunately, my father-in-law was on vacation and was pretty much my chauffeur all day.
My ultra sound was the first part of my appointment. I pretty much have an ultra sound almost every time I go because of my autoimmune disease so they can monitor me and the baby. The nurse noticed I wasn't doing so well and helped me slowly walk back to the room and up onto the table. I dreaded laying on my back becasue any pressure to my SI joint makes it so much worse especially when I'm already hurting. Sometimes it helps if I bend one of my legs. This helped, but only a little bit. My father-in-law definitely enjoyed getting to see Jackson during the ultra sound. Unfortunately, I didn't get to enjoy it as much as he did. As I was laying on my back, I began overheating. My skin felt very hot and my face began sweating. It also didn't help that she was pushing on my stomach. Once she realized I wasn't feeling well she quickly finished up. She helped me walk to the room for my next part of the appointment and got some water for me.
The next nurse walked in and said,"I heard you're not doing so well. Will you be able to let me check your weight and give me a urine sample." I sighed because I knew it was going to be a task and told her I would try to do what I could. She helped me walk to the scale and stood outside the bathroom door just in case and helped me walk all the way back to the room.
At this point, I was in even more pain. I had definitely aggravated my lower back from all the activity. While I waited for my doctor to come in the room I had to literally lean to the right side the whole entire time to put as little pressure as possible on my left side.
I think by now the whole office knew I was struggling. The first thing my doctor said was, "I heard you're not doing too well." Originally my Rheumatology doctor proscribed the prednisone for me so he's the one that decided the dosages and how to taper me off. I informed her that I had been off the prednisone since Monday and that I started having a flare the night before. She basically told me that I wouldn't be able to manage without the prednisone and that I would need to be on it the rest of my pregnancy. I was okay with that because she was right.
We discussed that with me being on the prednisone the rest of the time that Jackson and I will both definitely be much bigger than if I were not taking it. Apparently there is also sugar in prednisone so between the weight gain and the sugar I will most likely be a pregnant diabetic. I guess this is also common and they usually test pregnant women for this anyway. I drank the really sugary drink so I could get my blood drawn for them to do the tests.
I had to wait an hour before I could get my blood drawn so my father-in-law and I drove across the street to the CVS to get my new prescription filled. By the time we were done at CVS and getting my blood drawn it was time for my next appointment with therapy. My doctor at therapy also could tell I wasn't doing so well.
I was already in pain because of my flare and I had a pretty active morning so it was really hard for me to get around at this point. He asked me different questions trying to find the root of my problems. Where does it hurt? Does it hurt more when you push off with your left leg? Does it hurt to lay a certain way? What does it feel like if you bend this way? He'd push on different muscles and then have me walk to see what made me feel better after each time. This time he actually pushed on my lower back directly where it hurt. I know as painful as it was he was actually helping. I just wouldn't see the affects of it that day.
By the time I finally got back home I was so physically drained. I still felt pretty bad that night. Saturday morning I woke up and felt so much better. My father-in-law said he could tell I felt better because I wasn't moving as slow and the expressions on my face looked so much better. I still was in pain on Saturday, but I noticed a major improvement.
What surprises me is how I can go from one extreme to another in a matter of no time. I felt like 75% better yesterday, but this morning was a different story. From the moment I woke up I knew it was going to be a bad day. Just laying there my whole left side was in pain. I've been up since 6:30 am because I was so uncomfortable I couldn't go back to sleep. When I finally got the courage to get out of bed I got breakfast and took my medicine. It's almost 1pm and I am just now starting to somewhat feel better.
It's very frustrating having an autoimmune disease that can be so unpredictable, especially when I have medication I can take to make me feel at my full potential, but I can't take it now. It's hard to mentally and physically prepare myself for a flare. It's also very draining. When I feel that bad it takes a lot out of me. It's also frustrating struggling to get around and feeling so helpless. I'm hoping that being back on the prednisone things will start getting better. It's definitely a wait and see process.
Tuesday, September 18, 2012
Case of the Mondays
And just when I thought I was starting to feel better... Monday happened. Everyone dreads Mondays because it's the beginning of a new work/school week. I was dreading Monday because it was the first day I was going to be off the prednisone. Sunday was a little rough for me so I was anticipating Monday to be bad.
It was a little bit of a struggle to get out of bed on Monday, but not impossible. I could definitely tell I was no longer on the prednisone. Usually it takes me a while to get moving in the mornings, but on Monday I felt like I was dragging around all day. The only times I was out of bed was for a meal, to go to the bathroom, to refill my water bottle or to get an ice pack. I tried to do these things occasionally so I wasn't laying in bed all day. The longer I was up the more I could feel the pain in my lower back intensify. I used the iced packs a lot hoping it would help with the swelling/inflammation.
Monday was also my first day trying the supplements. With the prednisone it usually took a couple of hours to kick in and I would start feeling better. So when a couple of hours rolled around and I wasn't feeling any better I began to feel discouraged. My mom pointed out that it may take a few days for the supplements to get through my system and so I may not see any affect right away (that is if they even work). Monday night was even a struggle. I did a lot of tossing and turning. It has been really hard for me to get comfortable lately and I am up often throughout the night.
This morning was about the same as Monday when I woke up. I had to get moving today because I had to get to therapy. They could tell I was having a hard time too. It's funny how working on different muscles can make such a difference in how I feel. The muscles in my legs are trying to compensate for the pain in my back. I'm unknowingly walking differently to try to avoid the pain which puts stress on my legs, along with the weight gain. Everything is connected so when my muscles tighten it affects my lower back. It's like a constant chain reaction. Matt [my doctor] and his whole team are wonderful because I always feel better when I leave. (If you live in the area and you have any type of injury, pregnant or not, I highly recommend them!)
Last night when I was trying to fall asleep, I kept thinking 3 months.. 3 months... That's a long time! How am I going to make it through these next 3 months? As much as I try to stay positive, it's really hard because not being able to predict a flare or prevent it freaks me out. I think I am afraid it's going to get as bad as it did. It only took a day for it to get that bad, so if I'm kind of hurting today that means it could go either way tomorrow.
Fortunately, I came across this:
"Most people give up because they look at how much further they have left to go, instead of seeing how far they've come."
Giving up is not an option in my case, but that's besides the point. It's the fact that I was thinking about how much further I have to go, instead of how far I've come. I've gone 6 months without any medication, besides a few weeks on the prednisone. The fact that I have made it this far means I am only in the home stretch!
Wednesday, September 12, 2012
The Next Step
This week is my last week on the Prednisone. I was kind of concerned going down on my dosage this week just because it has made a difference with reducing my flare. I tend to be a worrier sometimes, but I think I have a right to worry about this because I want to be prepared just in case my flare isn't gone or it comes back.
Over the weekend, I was doing much better so I got out of the house a little bit and was more active. It's really hard to find the line between being too active and not active enough. I don't know if it's the decrease in my dosage, if I was too active this past weekend or a little of both because I have felt my lower back in a little bit of pain. Don't get me wrong it is not even close to as bad as what it was, but I have been a little apprehensive with everything I have done these past few days.
As a part of my precautions, I went to a few stores this weekend. My mom found a blog online from a woman who was pregnant with the same autoimmune disease as me. She tried a few supplements to take care of her inflammation so I think I'm going to give it a try. I know that just because it worked for her doesn't mean it will work for me, but I've got my fingers crossed!
Of course before buying all of these supplements I checked with my OBGYN first to make sure it wouldn't harm Jackson. We found everything we needed at The Vitamin Shoppe. Just in case someone with a similar situation comes across my blog, I'll share what we ended up buying. We got:
On a positive note, I can finally put on my own shoes again. I don't know if I ever mentioned that in my other blogs, but I couldn't bend over or sit and lift my legs up because it was too painful. I also kind of got away from doing my stretches because it was too painful and I am finally able to do most of them again.
For now the plan is to continue the Prednisone for 4 more days and then I'll start the supplements. I have therapy twice a week for the rest of the month. I'm trying to do my exercises twice a day and ice at least twice a day. I'm wearing my back brace everyday. And some how trying to find the thin line between being just active enough so I don't become tight/stiff and I don't over do it.
Every time I feel Jackson move it fascinates me all over again and it reminds me that everything I am going through is going to be worth it! I just have to keep tackling each day one at a time.
Over the weekend, I was doing much better so I got out of the house a little bit and was more active. It's really hard to find the line between being too active and not active enough. I don't know if it's the decrease in my dosage, if I was too active this past weekend or a little of both because I have felt my lower back in a little bit of pain. Don't get me wrong it is not even close to as bad as what it was, but I have been a little apprehensive with everything I have done these past few days.
As a part of my precautions, I went to a few stores this weekend. My mom found a blog online from a woman who was pregnant with the same autoimmune disease as me. She tried a few supplements to take care of her inflammation so I think I'm going to give it a try. I know that just because it worked for her doesn't mean it will work for me, but I've got my fingers crossed!
Of course before buying all of these supplements I checked with my OBGYN first to make sure it wouldn't harm Jackson. We found everything we needed at The Vitamin Shoppe. Just in case someone with a similar situation comes across my blog, I'll share what we ended up buying. We got:
- liquid Omega-3 - it has a lemon flavor (the guy let me try it at the store - it didn't have a fishy taste!)
- Ginger Trips - it's a sugar free gumlet (not sure about this ones taste, haven't tried it yet)
- Turmeric Extract - its 95% Curcumin. This one is supposed to be the BIG one that helps. Its supposed to help reduce inflammation.
- Magnesium Chelate (100 mg) - the guy at the store recommended this one when we told him my situation. Its supposed to help with things like leg cramps.
On a positive note, I can finally put on my own shoes again. I don't know if I ever mentioned that in my other blogs, but I couldn't bend over or sit and lift my legs up because it was too painful. I also kind of got away from doing my stretches because it was too painful and I am finally able to do most of them again.
For now the plan is to continue the Prednisone for 4 more days and then I'll start the supplements. I have therapy twice a week for the rest of the month. I'm trying to do my exercises twice a day and ice at least twice a day. I'm wearing my back brace everyday. And some how trying to find the thin line between being just active enough so I don't become tight/stiff and I don't over do it.
Every time I feel Jackson move it fascinates me all over again and it reminds me that everything I am going through is going to be worth it! I just have to keep tackling each day one at a time.
Thursday, September 6, 2012
Eventful Weekend
For everyone else this past weekend was Labor Day Weekend, but for me it was the weekend of MY WEDDING! Planning and having a wedding in general is exhausting, but being 24 weeks pregnant while doing all this takes even more out of you! I was extremely worried about how things would be especially with my flare happening a few weeks ago. I honestly thought my dad would be pushing me down the isle in a wheel chair!
Friday, I went to therapy, which was a good thing. I was feeling good by Friday afternoon and I was ready for the weekend. We had our rehearsal Friday evening and we all went back to the hall to decorate. Needless to say when 11pm rolled around I was calling it quits and ready to go to bed! I knew Saturday was going to be a long day. When I went to bed my back was bothering me a little bit and I was really hoping I would be okay when I woke up Saturday morning.
I woke up at 7am on Saturday. I was a little stiff and so the first thing I did was take my medicine and iced for 20 minutes. I put on my back brace (to wear until I put on my dress) and I started to get worried when I was moving slow. I tried not to think about it because mornings are usually the worst part of my days. My bridesmaids did a great job at helping me. They made sure I was comfortable and relaxed as much as possible. The ceremony was pretty quick and after tons of pictures we were on to the reception. At this point, I was finally feeling alright.
I wanted to enjoy myself as much as possible because it was MY wedding day. I had Tylenol Extra Strength, ice packs, my back brace, and pillows all for back up when I needed them. Of course, I ended up needing almost all of these things. I kind of wish we had a camera for when my sisters were trying to help me put on my back brace in the bathroom with this big huge wedding dress going everywhere. I also ended up sitting on the pillows most of the night for support. I came prepared and I survived!
My night was even later on Saturday. The limo didn't come and get Stephen and I until midnight. A lot of people were asking how I was still standing and honestly I asked myself the same thing. I have no clue! I'm a trooper, I guess.
Sunday was a different story. I struggled hardcore getting out of bed that morning. Stephen and I stayed in a hotel and let me tell you our hotel was huge and that was the longest walk ever to the reception desk! I took my medicine as soon as I got home and I went back to sleep. I felt a little better waking up the second time around. I spent most of my day recovering from my eventful weekend.
It is now Thursday and I have been recovering all week from my wedding weekend. Therapy definitely helped on Tuesday. I had a massage and they got most of the knots out of my back and my legs. I think most of my pain from my flare is finally gone. I'm mostly just achy and tight/stiff now. I'll take both of those any day over the pain I was experiencing.
Even though I am just now starting to feel better from the weekend, everything turned out better than I expected! I was prepared for the worst, but thankfully I was lucky. It was a beautiful wedding spent with amazing family and friends. I can't wait to get our pictures back and share our wonderful day with everyone! My wedding will definitely be a memorable one!
Friday, I went to therapy, which was a good thing. I was feeling good by Friday afternoon and I was ready for the weekend. We had our rehearsal Friday evening and we all went back to the hall to decorate. Needless to say when 11pm rolled around I was calling it quits and ready to go to bed! I knew Saturday was going to be a long day. When I went to bed my back was bothering me a little bit and I was really hoping I would be okay when I woke up Saturday morning.
I woke up at 7am on Saturday. I was a little stiff and so the first thing I did was take my medicine and iced for 20 minutes. I put on my back brace (to wear until I put on my dress) and I started to get worried when I was moving slow. I tried not to think about it because mornings are usually the worst part of my days. My bridesmaids did a great job at helping me. They made sure I was comfortable and relaxed as much as possible. The ceremony was pretty quick and after tons of pictures we were on to the reception. At this point, I was finally feeling alright.
I wanted to enjoy myself as much as possible because it was MY wedding day. I had Tylenol Extra Strength, ice packs, my back brace, and pillows all for back up when I needed them. Of course, I ended up needing almost all of these things. I kind of wish we had a camera for when my sisters were trying to help me put on my back brace in the bathroom with this big huge wedding dress going everywhere. I also ended up sitting on the pillows most of the night for support. I came prepared and I survived!
My night was even later on Saturday. The limo didn't come and get Stephen and I until midnight. A lot of people were asking how I was still standing and honestly I asked myself the same thing. I have no clue! I'm a trooper, I guess.
Sunday was a different story. I struggled hardcore getting out of bed that morning. Stephen and I stayed in a hotel and let me tell you our hotel was huge and that was the longest walk ever to the reception desk! I took my medicine as soon as I got home and I went back to sleep. I felt a little better waking up the second time around. I spent most of my day recovering from my eventful weekend.
It is now Thursday and I have been recovering all week from my wedding weekend. Therapy definitely helped on Tuesday. I had a massage and they got most of the knots out of my back and my legs. I think most of my pain from my flare is finally gone. I'm mostly just achy and tight/stiff now. I'll take both of those any day over the pain I was experiencing.
Even though I am just now starting to feel better from the weekend, everything turned out better than I expected! I was prepared for the worst, but thankfully I was lucky. It was a beautiful wedding spent with amazing family and friends. I can't wait to get our pictures back and share our wonderful day with everyone! My wedding will definitely be a memorable one!
Tuesday, August 28, 2012
First Time Blogger
I'm not usually a real open person with people that I don't know so this whole blogging thing is very different for me. I decided to start this blog so people can have a better understanding of what I am going through, which is kind of why I wish I would have started this a little sooner. I appologize because this blog may be a little bit longer than most as I am trying to sum up my past 3 weeks.
If you have no idea why I am blogging, I would advise reading the tabs at the top of this page to get a little background knowledge of my situation.
This whole month has been one of the most difficult times of my life. Usually, I am on medication and when a flare occurs my Rheumatology doctor is able to take care of the situation immediately. Since I discovered I was pregnant I have opted to stop taking all of my medication. All of my medications can affect my baby. If I continued to take the medicine the chances of my baby having a birth defect (or something worse happening) would be more likely. I felt like it was selfish to continue taking the medicine to help myself knowing that there were chances I was harming my baby.
The problem with not taking my medication is that I could have a flare at any time. For several months, the only thing I have been taking is prenatal vitamins. About two and a half weeks ago, I began experiencing a flare from my autoimmune disease. I expected it was going to happen at some point in my pregnancy, but I never thought it was going to get as bad as it did.
On a Sunday morning I woke up somewhat stiff and started having a hard time walking. Unlike before I didn't have any medicine to reduce my flare. I took some Tylenol Extra Strength since this is one of the only pain relievers I have to take.
The next morning was worse. I struggled getting out of bed and walking around the house. I got in my car and was in pain the whole entire drive to work. When I pulled into the parking lot I dreaded getting out of the car. It took me a few minutes to swing my legs out and stand up. I stood there for a minute as my eyes swelled up with tears. I began feeling some of the worst pain I've ever felt in my life. I took a deep breath and built up my courage to walk up to the building. I waddled and limped all the way there. Immediately one of the managers knew something was wrong and told me I shouldn't be working. She called someone else in to take my spot. I took my time getting back to my car and immediately called my fiance, Stephen, warning him that I would need help when I got home.
I called Stephen when I was pulling into the driveway and he met me outside. I could barely get out of the car. He helped me walk all the way back to the room and helped me as I struggled to somehow crawl into bed. I was so exhausted and in so much pain all I wanted to do was sleep. I took a nap and when I woke up I called my doctors. They wanted to see me before they decided what to do. The appointment they set me up was for three days later, on Thursday. Looking back, I didn't know how bad my flare was going to get, but I should have asked for the appointment to be as soon as possible.
Thankfully, I don't work Tuesdays. I go to therapy on Tuesdays. Therapy helped, but the pain came back and only got worse. The next two days were by far the worst part of my flare. It hurt to lay down. It hurt to sit. It hurt to stand. And it definitely hurt to walk. Standing up from sitting and standing to sitting down were THE worst parts of my day. I can only imagine how inflammed and swollen my SI joint was because the pain was unbearable. I really think it's hard to explain for anyone to understand what I was going through. The best comparison I can give is imagine having the worst headache/migraine you've ever had times that by ten and then the only thing you can take is baby asprin for the pain. Yeah, Tylenol Extra Strength was doing nothing to help compared to my usual medications.
I was miserable to say the least. It took about 15-20 minutes to go to the bathroom, which was 10 seconds down the hall, and back. I used all my energy to sit up in bed. Once I was up I had to prepare myself to stand because when I did stand pain would shoot down my leg. My muscles started tightening up which made the pain worse. Every time I put weight on my left leg I felt pain shoot down and I felt like my leg would give out. Getting to the bathroom was the easiest part because I hadn't been up for very long. Remember how I said standing to sitting was one of the worst parts? I tried bracing myself on the sink and would try to slowly sit down. Sometimes when I was sitting my leg would spaz out making it feel like it was impossible to stand back up. Everytime I tried to stand it would spaz over and over sending sharp pains down my leg. By the time I finally was able to stand it took all my energy out of me and I was in so much pain I literally couldn't walk. Getting back to bed felt like it took forever. If Stephen was around (which sometimes he was at work) he would come help me. I used him as a crutch and tried to put as little weight as I could on my left side. The bed is higher up so getting back in it was quite a task. At this point I would be crying. Stephen would say, "it's going to hurt whether you try to pull yourself up or whether I lift you, but if I lift you it will be over faster." He lifted me into bed and once I finally was able to get comfortable I would just go back to sleep.
This was obviously a reoccuring issue. I drank a lot of water and with being pregnant you have to go to the bathroom all the time. I dreaded going to the bathroom so much that I started drinking less water. Well this was a bad idea because the more dehydrated you are the more your muscles tighten and cramp up. The more my muscles tightened, the more pain I was in. I felt like I was in a lose-lose situation.
I have never felt so pathetic or helpless in my life. I don't ever wish that pain on anyone. Therapy said it was like I was walking around on a swollen sprained ankle without any medicine, crutches or anything to help. Once I was able to see my Rheumatology doctor he put me on prednisone. I was really limited on options of what I could take because of the baby. The prednisone only helps with reducing the flare it didn't help with the pain. The next few days I only felt a little better. I was still pretty helpless and didn't leave the house for days.
Obviously with being in so much pain, I was not very active. The whole not being active thing kind of hurt the situation also. The more active I am the better I feel because I am not stiff and the less pain it causes. There was nothing really I could do. Days seemed very long and boring. I learned there's really nothing on day time TV.
Most people know pregnant women have lower back pain. Unfortunately, I have the pregnancy back pain PLUS my autoimmune disease back pain. The pain is more than discomfort, it's extremely severe. I knew I wasn't going to be a normal pregnancy case for my OBGYN or my Rheumatology doctor. If I had to guess, with my disease being more common in men, I'd say neither one of them or obviously myself have really experienced a pregnancy with my disease. So we are all learning from this.
We ended up having to increase the milligrams of the prednisone because I wasn't seeing enough of an improvement. Since then, I have been feeling better. Slowly, but surely. I am also in a pregnancy back brace which we think is also helping. I've learned that my disease is on my right side making the movement in my right hip and SI joint limited. This means my left side is doing all the work, plus extra work to make up for what my right side isn't doing. This also explains why my left side was so inflammed.
For a while I thought things weren't going to get better, but things are finally starting to turn around. Right now we are trying to taper me off the prednisone and trying to have a plan of action in case a flare occurs again. I know it is likely, especially because of the weight gain and how my hips are being altered.
As of right now, the baby is doing well and I am slowly beginning to recover.
If you have no idea why I am blogging, I would advise reading the tabs at the top of this page to get a little background knowledge of my situation.
This whole month has been one of the most difficult times of my life. Usually, I am on medication and when a flare occurs my Rheumatology doctor is able to take care of the situation immediately. Since I discovered I was pregnant I have opted to stop taking all of my medication. All of my medications can affect my baby. If I continued to take the medicine the chances of my baby having a birth defect (or something worse happening) would be more likely. I felt like it was selfish to continue taking the medicine to help myself knowing that there were chances I was harming my baby.
The problem with not taking my medication is that I could have a flare at any time. For several months, the only thing I have been taking is prenatal vitamins. About two and a half weeks ago, I began experiencing a flare from my autoimmune disease. I expected it was going to happen at some point in my pregnancy, but I never thought it was going to get as bad as it did.
On a Sunday morning I woke up somewhat stiff and started having a hard time walking. Unlike before I didn't have any medicine to reduce my flare. I took some Tylenol Extra Strength since this is one of the only pain relievers I have to take.
The next morning was worse. I struggled getting out of bed and walking around the house. I got in my car and was in pain the whole entire drive to work. When I pulled into the parking lot I dreaded getting out of the car. It took me a few minutes to swing my legs out and stand up. I stood there for a minute as my eyes swelled up with tears. I began feeling some of the worst pain I've ever felt in my life. I took a deep breath and built up my courage to walk up to the building. I waddled and limped all the way there. Immediately one of the managers knew something was wrong and told me I shouldn't be working. She called someone else in to take my spot. I took my time getting back to my car and immediately called my fiance, Stephen, warning him that I would need help when I got home.
I called Stephen when I was pulling into the driveway and he met me outside. I could barely get out of the car. He helped me walk all the way back to the room and helped me as I struggled to somehow crawl into bed. I was so exhausted and in so much pain all I wanted to do was sleep. I took a nap and when I woke up I called my doctors. They wanted to see me before they decided what to do. The appointment they set me up was for three days later, on Thursday. Looking back, I didn't know how bad my flare was going to get, but I should have asked for the appointment to be as soon as possible.
Thankfully, I don't work Tuesdays. I go to therapy on Tuesdays. Therapy helped, but the pain came back and only got worse. The next two days were by far the worst part of my flare. It hurt to lay down. It hurt to sit. It hurt to stand. And it definitely hurt to walk. Standing up from sitting and standing to sitting down were THE worst parts of my day. I can only imagine how inflammed and swollen my SI joint was because the pain was unbearable. I really think it's hard to explain for anyone to understand what I was going through. The best comparison I can give is imagine having the worst headache/migraine you've ever had times that by ten and then the only thing you can take is baby asprin for the pain. Yeah, Tylenol Extra Strength was doing nothing to help compared to my usual medications.
I was miserable to say the least. It took about 15-20 minutes to go to the bathroom, which was 10 seconds down the hall, and back. I used all my energy to sit up in bed. Once I was up I had to prepare myself to stand because when I did stand pain would shoot down my leg. My muscles started tightening up which made the pain worse. Every time I put weight on my left leg I felt pain shoot down and I felt like my leg would give out. Getting to the bathroom was the easiest part because I hadn't been up for very long. Remember how I said standing to sitting was one of the worst parts? I tried bracing myself on the sink and would try to slowly sit down. Sometimes when I was sitting my leg would spaz out making it feel like it was impossible to stand back up. Everytime I tried to stand it would spaz over and over sending sharp pains down my leg. By the time I finally was able to stand it took all my energy out of me and I was in so much pain I literally couldn't walk. Getting back to bed felt like it took forever. If Stephen was around (which sometimes he was at work) he would come help me. I used him as a crutch and tried to put as little weight as I could on my left side. The bed is higher up so getting back in it was quite a task. At this point I would be crying. Stephen would say, "it's going to hurt whether you try to pull yourself up or whether I lift you, but if I lift you it will be over faster." He lifted me into bed and once I finally was able to get comfortable I would just go back to sleep.
This was obviously a reoccuring issue. I drank a lot of water and with being pregnant you have to go to the bathroom all the time. I dreaded going to the bathroom so much that I started drinking less water. Well this was a bad idea because the more dehydrated you are the more your muscles tighten and cramp up. The more my muscles tightened, the more pain I was in. I felt like I was in a lose-lose situation.
I have never felt so pathetic or helpless in my life. I don't ever wish that pain on anyone. Therapy said it was like I was walking around on a swollen sprained ankle without any medicine, crutches or anything to help. Once I was able to see my Rheumatology doctor he put me on prednisone. I was really limited on options of what I could take because of the baby. The prednisone only helps with reducing the flare it didn't help with the pain. The next few days I only felt a little better. I was still pretty helpless and didn't leave the house for days.
Obviously with being in so much pain, I was not very active. The whole not being active thing kind of hurt the situation also. The more active I am the better I feel because I am not stiff and the less pain it causes. There was nothing really I could do. Days seemed very long and boring. I learned there's really nothing on day time TV.
Most people know pregnant women have lower back pain. Unfortunately, I have the pregnancy back pain PLUS my autoimmune disease back pain. The pain is more than discomfort, it's extremely severe. I knew I wasn't going to be a normal pregnancy case for my OBGYN or my Rheumatology doctor. If I had to guess, with my disease being more common in men, I'd say neither one of them or obviously myself have really experienced a pregnancy with my disease. So we are all learning from this.
We ended up having to increase the milligrams of the prednisone because I wasn't seeing enough of an improvement. Since then, I have been feeling better. Slowly, but surely. I am also in a pregnancy back brace which we think is also helping. I've learned that my disease is on my right side making the movement in my right hip and SI joint limited. This means my left side is doing all the work, plus extra work to make up for what my right side isn't doing. This also explains why my left side was so inflammed.
For a while I thought things weren't going to get better, but things are finally starting to turn around. Right now we are trying to taper me off the prednisone and trying to have a plan of action in case a flare occurs again. I know it is likely, especially because of the weight gain and how my hips are being altered.
As of right now, the baby is doing well and I am slowly beginning to recover.
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