4.29.2013

My Disease: Living with Ankylosing Spondylitis Part 2/2

To read the beginnings of my Ankylosing Spondylitis journey, check out my post,

My Disease: Living with Ankylosing Spondylitis Part 1/2.

***

I am going to start talking about what has happened since it became the new year - 2013.

Post Brazil trip: I had gotten back into the states a few days into January (More on our Brazil trip here.) Literally, the second we landed in the US and my phone got service, I checked my voice mail and heard a message from the nurse at my rheumatology office. She told me to call her back. Why didn’t she just tell me the results over the phone? I felt sick to my stomach because I thought they were going to tell me I had AS. I was afraid she was going to say my spine was fusing together. I was talking to Kevin about it in the airport and he basically said that you have all the symptoms, it runs in your family, and you have known you may have this disease for a couple of years. It will be okay either way and not to worry. It was true. I would be fine, but I didn’t want to have a lifelong disease and have them tell me I had it FOR SURE. I waited to call the nurse until we got into baggage claim and unfortunately I got her voicemail. I didn’t hear back from her until the next week (called on a Friday) and she basically said my X-Rays looked good (meaning the AS wasn’t SO bad it was fusing my spine). She also said I could take Advil (800 mg) for the pain.

I thought they would have given me some more options as to what medicines to take for the pain. I know there wasn’t many options because I was nursing Ryder but my rheumatologist said she would look into some and find out for me. So, I tried Advil. One thing I didn’t like was that I didn’t want to be popping 800 mg. of Advil round the clock. I know it can give you ulcers as my mom had one when you take a lot of Advil, but whatever, I tried it.

Waking from Pain: A little later in January, I started waking up EVERY night in a row for 2-3 weeks straight. I had woken from the night plenty of times before because of the pain and inflammation but not EVERY NIGHT for weeks straight! I had this happen when I first started getting back pain in the summer of 2011 and then a few times here and there in the winter of 2012 after Ryder started sleeping through the night.  Oh, and when I was pregnant I would sometimes. It was very frustrating whenever it happened before but the literal worst when it happened for weeks. When you wake up in the middle of the night, at least for me, I can’t breathe. It hurts to breathe because my ribs are so inflamed. I am talking about the back of my ribs. Also, my whole back just kills. I really cannot explain this phenomenon unless you have AS. It is so bad. It is very frustrating because you are so tired and can’t sleep. My body wasn’t allowing me to sleep longer than 4ish hours. Also, the scary thing is you don’t know how long you will wake up every night. It could be another day and the flare could go down or it could be the rest of your life! It is hard not to think it may be the rest of your life when it happens this long. I was starting to dread going to sleep and would get anxious because it was so horrible.

I tried many things when I woke up like:

+ Sleeping on my sides but that wasn’t possible…

+ Laying on my stomach…I couldn’t even LAY on my stomach because I couldn’t relax at all because I was in so much pain.

+ Laying on my back. Nope, I had woken up like that. That is how I had been sleeping since I had Ryder because it seemed to be the best way to sleep with my AS. I slept on my back with 1 pillow behind my head and 1 or 2 underneath my knees.

+ I would try to lay on the floor sometimes but I could not even lay there. The ground was too hard and I was too inflamed.

The only option was to sit up in a La-Z-Boy for an hour or so until the inflammation went down just enough that I could maybe fall asleep. And this is also where Advil comes into play. Well, by the time I would wake up in the middle of the night (5 am or whatever), take the pills, they would kick in right when I would have been able to maybe fall asleep in my own bed. So what was the point of Advil?

Kevin would find me in the La-Z-Boy many mornings and ask if I was sleeping or how long I had been awake. It was so frustrating. I googled numerous times “Tips for sleeping with AS” or “Best mattress for AS”, etc. and unfortunately, it is very common to not be able to sleep. AS and sleep just don’t go hand in hand, unless you have a mild case I suppose and don’t wake from the pain?

Why does it wake you up? Your spine gets inflamed when you are immobile. When it is very bad it can wake you up and you realize you have to move because you literally cannot lay there. Usually it gets less inflamed as you move around. When it isn’t too bad, usually it is just morning stiffness and you are unable to move fully in different ways for a couple of hours until it goes down. {Right now, my stiffness never goes away but yeah.}

Well, guess what? You HAVE TO SLEEP. You can’t get around it. I wish that I could just not sleep. I wish I could sleep moving, somehow. I thought about having a super positive attitude and thinking “Oh I should workout at 4 am every day! And then do a blog post! And clean and do laundry! And be very productive! And take a hot shower to help my joints calm down! That is it, I will shower in the middle of the night!” But seriously, you would have to catch up on a few more hours to make 6 total in a night sometime. You cannot be an energizer bunny all the time. You will hit a wall. It is not possible. Sleep is necessary AND helps you feel better. 4-5 hours of sleep is not sufficient!

And a common symptom of people with AS is FATIGUE! Why? Well, your body is fighting inflammation nonstop which makes you even more tired! Your body is in actuality, attacking its own immune system, and then your body in return is trying to fight the inflammation! My body is pretty cool, right? Not really. So in reality, I should be getting more sleep than might be normal for some people.

What I also tried regardless:

+ Mattress Firm/Soft-ness: We have a Sleep Number bed and I would vary the soft and firmness of the mattress trying to find an optimum comfort level. I’ve read and now agree, the firmer the better, but not like the hardest thing you’ve ever slept on. Basically a little firmer seems to be better. But NOTHING was helping at this time. I talked with Kevin long and hard and we thought we may have to purchase a new mattress, try it out, return it if doesn’t ’t work, and keep doing it until we found one I could sleep longer than a few hours on. I think there are companies that let you try mattresses out for like a month and return if you don’t like, etc. I didn’t want to go this route because I didn’t feel like it would help that much (& the money factor) but I was getting desperate.

+ Hot Shower before bed to help my back relax.

+ Working Out: When I last met with my rheumatologist in December of 2012, I told her I was going to work out – a lot – and try medicine to help the pain and hopefully it would be fine. Well, ever since January I have been working out great…4-6 times a week. I don’t know if it is helping, but the fact is, when you work out, your body does better because you are more mobile and in general, patients with AS who workout, do better. I am very diligent. What have I tried? Kickboxing, Barre, Yoga, Pilates, Running, Lifting Weights, HOT yoga, Zumba, Step classes, Ab classes, & more. Am I able to do everything normally? Heck no.

+ Topical Pain Relieving Ointment: I bought some generic Target ‘Bengay’ to put on my back. It feels like an Altoid on your back. I don’t especially like it, but it is kind of numbing. I feel like it distracts you from the pain. Sometimes I smear it all over my back. It doesn’t help the problem though, just is a little distracting/numbing for a small amount of time.

I was getting so discouraged because Advil was the only thing I could take and it wasn’t helping at all. I just couldn’t live for the rest of my life sleep deprived. It was very hard. Kevin was feeling bad for me too.

Why not just quit breastfeeding? You may be wondering why I didn’t just give up breastfeeding so I could take other drugs than Advil. At this point, I had only nursed Ryder for a few months because it had taken him 2 months to learn how to nurse. I had worked SO hard and didn’t want to only go a few months. Honestly, I think most people would have quit trying to teach their baby to nurse before even getting to 8 weeks, so I had done some amazing stuff. I had worked hard and just nursing him for a few months was amazing. He had received plenty of good stuff. My goal was 12 months since that is what they recommend but I was just going to see how it went and try to get around there. Because it took Ryder so long to learn how to nurse, I felt like I couldn’t just quit at 4 months because I had worked so hard. I mean, we had just gotten our physical therapy bill for Ryder (to learn how to suck) and it was around $450! I had no clue it would end up being that expensive. So much for saving money on formula, haha! Basically, I was so stubborn and persistent, I got him to learn how to nurse, and I wasn’t going to quit easily. I had even talked to my Lactation Consultant, Becky and she told me there were other medicines safe for me to take while nursing Ryder. There is a guy, Dr. Hale, who all he does is research medicine in mother’s breast milk, checks the amounts of medicine that passes through the milk, watches the affects on babies (short and long-term), etc. He has a book titled “Medicine and Mother’s Milk” and apparently even Humira is safe for nursing mothers (Lactation Level: 2 (1 is the safest))! Humira is a biologic medicine that is given through shots. Basically you give yourself shots and the company itself says “DO NOT TAKE IF PREGNANT OR NURSING!” Well, according to Dr. Hale, it is safe, and that is some of the strongest stuff they give you for AS.

At this point, I was needing some other medicine. I called my rheumatologist’s nurse and told her the situation and said “Advil is not working. I need something else.” She got back to me and basically said, “Advil is the safest. It has been studied for a long time. You can ask your obgyn what they recommend.” I said, “Well what medicines should I ask them to look up?” She said, “Just ask them what they would give you.” So I call my obgyn’s nurse and tell her the situations. My obgyn is not a rheumatologist, obviously. The nurse asked me “What medicines should I look up? Can you give me a list?” I told her they wouldn’t tell me any and I am supposed to find out what I can take. She said, well, if you get a list I can look them up or you can call your pediatrician. So I call Ryder’s pediatrician and tell her how I am getting the run around. She spoke with Ryder’s pediatrician, Dr. Markley (who was actually my pediatrician and the nicest lady ever!) and she said Prednisone would be ok, etc. I call my rheumatologists’ nurse and she says, sometimes they prescribe it but not very often for nursing mothers, but you would have to make an appointment.

I clearly need something to function better so I call and get on a wait list for the other rheumatologist at the office because the one I had been seeing is basically saying Advil is all I can take and when I come in to see her she just says she will look into it and get back to me.

* Side note: I have no problems with any of the rheumatologists at the office I had been going to. I actually REALLY like them. Like the girl…I would hang out with her, she is so cool haha. I just don’t want to say their names on here because I switched rheumatologists, for now. Haha. I think the main problem was that I was nursing. If I wasn’t, I’m sure my experience would have been better but I wanted to do both: nurse and take medicine. There are a lot of options of safe medicines to take while nursing but I would say they err on the side of being cautious that they wouldn’t really give me any options. *

So I get very lucky and get into the rheumatologist my mom has been seeing in a couple of days (there was a cancellation). Normally, to see him, you have to wait months, which is torturous. He was great and said I clearly need to be on something so I can sleep through the night. He said he would talk to Ryder’s pediatrician and find out an option for me. Our plan was to try a pain killer at night so I could sleep through the night and if I could get a good night’s rest then I could function better during the day. He said if that doesn’t work we can try a steroid but he doesn’t prefer those because they aren’t as safe. He prescribed me Vicadin so I’ve been taking that since that appointment which was months ago. I would say I started being able to sleep a little better and for longer right as I had visited my rheumatologist. The Vicadin may have helped a little but I don’t think it caused the flare up to really go down if that makes sense. But things got a little better for a teeny bit.

Then it got the worst it had ever been and I was getting very desperate. I started reading anything and looking into everything on how to help myself because my meds weren’t cutting it and I didn’t know if Prednisone was super safe to breastfeed on...

Possible Options:

+ Physical Therapy- I still didn’t think it was worth my time and money because a year ago we had spent a ton of money on it and it didn’t seem to do anything. Plus, when you have AS you have periods of bad pain and periods of time when it may go into remission. Unfortunately, in 2 years since I’ve had this, I think I had maybe a couple months of very minimal pain. {Right now, I’m in the longest flare up in my life and my rheumatologist thinks it is quite long, too long}

+ Gluten AND Dairy Free Diet- I asked my rheumatologist about this prior and he didn’t seem to think it would make much of a difference. He said some people claim it can help (because gluten & dairy have inflammatory causing proteins in them and such) but with AS it honestly isn’t going to do that much. You may disagree but I am not going to be all trendy and try it for the heck of it as of now. He also said, while nursing, I shouldn’t change my diet drastically. In the future, if I get VERY desperate and don’t find meds to help, I may try this. But guys. NO DAIRY OR GLUTEN?! I feel like they are starting to make a lot of gluten free options at restaurants and selling more things at normal groceries stores but take away dairy too. What is left? After speaking with my doctor, I am not going to try this as of now.  Heck, if I could feel normal again, I would do it in a heartbeat! BUT…it won’t stop the progression of the disease and possible fusion if that is how my disease will go…

+ Medicines: You won’t believe how many medicines I researched online. I read many studies on nursing mothers and their babies, etc. I talked to my friend Amberley who has Rheumatoid Arthritis on what medicines she took. I talked to my lactation consultants. If I have any friends in the medical field I always try to get their take on it. AS is rare so no one knows what it is really haha.

+ Acupuncture/Chiropractic Care: I feel like this is a very, very, very, last resort if I have extra money to spend on haha. I haven’t tried these options out.

Random Other Pains: I also had these symptoms within the last couple months.

1. Costochondritis: Costochondritis is inflammation of the ribs – which is why it hurts for me to breathe when I wake up in pain. I can only take shallow breathes which leave you not feeling full of breath if that makes sense. Usually, after a few hours after waking up the inflammation goes down so it doesn’t hurt to breathe, BUT I am stiff (can’t turn my spine that much either way), but for a few days, the inflammation didn’t go down! It was horrible. The hard thing about AS is you don’t know the path it will take. It could get really bad and stay bad for the rest of your life or go into remission for a while and then come back or be mild for some people. The unknown is the worst. I took extra Advil when this happened and luckily it didn’t keep happening longer than a few days because it was horrible.

2. Achy Knees: I had achy knees here and there but luckily this hasn’t been too bad. AS can affect other joints as well.

I would consider this the worst my AS has been.

Limping/Not able to walk: This was the worst my disease had even been. I started limping because my right SI joint hurt so bad, I couldn’t move that leg fully throughout any motion. I literally thought I ripped a tendon, ligament, muscle, broke a bone, anything like that; I am no doctor so I don’t know anything about that haha. I was hoping that was the case because 1. If that was the case, then I could fix it! I could have surgery, stop working out for awhile while I recover, whatever. It could be fixed. I would do anything to fix it. 2. If it was the disease, well then dang, that SUCKS! How can you take care of your baby if you can’t walk!? And if it was hurting like that, was I going to start fusing? I was hoping it was that I had injured myself working out trying to get back in shape and fight my disease… Also, I like to do lifting classes 2 times a week and you lay on benches to do arm work and every time I went to sit up from the bench in a class…I literally thought I was going to have to ask someone to help me up! So, when you try to sit up from laying on your back, the sharpest most intense pain happens in my right SI joint. It also hurts really bad to lay on your back so I decided I couldn’t do these classes until the pain was managed.

Steroids: I called the nurse again and told her I couldn’t really walk and was limping. She said she spoke with him and he prescribed 10 mg of Prednisone (steroid which can help with the inflammation). When I picked up the prescription at Target I was SOOOO excited to try it! It felt like Christmas! I was hoping this would help me be able to walk and feel normal again and be safe to nurse Ryder.

The nurse got me in to see my rheumy right away because he just prescribed me Prednisone and needed to check on me. I literally came from working out – yes limping into the gym and limping out haha felt like such an idiot – and limped my way into his office! Kevin left work for a little bit to come to the appointment and keep Ryder under control ;) He said that I very well could have injured myself or have something mechanical going on with my back. Our plan was to try Prednisone, see full results by the weekend, call with how I’m doing, and if I am not doing much better then we will do an MRI. If the MRI shows something else is going on then I will see a spine specialist or go a different route. I was glad to have a plan and hoping I would be able to walk normal soon. On our way out, I told Kevin to look into a room because I may be joining the people in there someday… the room I was talking about was full of older people hooked up to IV’s getting infusions, lol! Party in there, not…! {Now I know there were probably getting Remicade – a biologic medicine}

Unfortunately, my limping was so bad and the Prednisone wasn’t helping. I knew it was a very low dose and knew up to 40 mg were to be safe (according to my LC’s) and I was only on 10 mg. I mentioned in my appointment that we had some wiggle room for the Prednisone and he said not above 20 mg. Kevin had a business trip and we were still in the process of our home remodel so I was living at my parents. Thank goodness I was, because I wasn’t able to really take care of Ryder that well. My dad and mom were so helpful and helped me bathe him. They said let them know what I need help with because I couldn’t do anything. It even hurt to just sit down! It was hard to get him out of his Pack ‘n’ Play he was sleeping in here. It was also hard to lift the stroller out of the trunk or lift him in the car seat. It was Easter weekend and I couldn’t even help him pick up Easter eggs :( (Easter post here.)

I called with how I was doing on Monday morning…literally at 8 am, the minute they opened, as my rheumy wanted me to. I told them I was still doing horrible and wanted to schedule the MRI and possibly up my Prednisone dose. We luckily got an MRI scheduled the day before we left for our Utah weekend trip (post here). She also said I could up my Prednisone dosage to 15 mg.

MRI: I got an MRI and it was actually not that fun. I can’t remember the last time I laid on my back…I sure don’t sleep like that. I now sleep on my sides. But you lay on your back for an MRI and you can’t move, at all, while they get the images they need. My MRI took about 40-ish minutes and my SI joints quickly felt like they were on FIRE! It was bad. I was just trying so hard to endure haha. Also, I got an MRI on my wrist when I was in elementary school and I don’t remember the MRI machine being SO CLOSE to your face and body. Good thing I am not claustrophobic because I am not, but felt a little in there lol. The MRI tech had to help me off the table! Later that day they called with the results. They said I didn’t injure myself and said it was my disease. That sucked. They said they saw inflammation on my spine and SI joints and especially on my right side. Whelp, makes sense. That is why it hurts to walk on my right side! So that was a bummer. I asked the nurse if it showed my spine was fusing and she said no. THANK GOODNESS! But she said my rheumy recommends I wean Ryder and start on Humira (the shots you give yourself). My plan was to continue on the Prednisone and Vicadin until I couldn’t continue any longer and then try the hardcore drugs (after weaning Ryder).

At that point, my Prednisone wasn’t really helping that much but over time, I began to walk without limping. Currently, I am not limping!!! By the way, when I say I am not limping, doesn’t mean I am normal by any means but it means the worst of it has passed, for now. So that is good. It lasted a few weeks maybe and it was bad. I always talk to Kevin about medication and things to help the pain because I wanted him to be in the know and want his opinion.

Fasting: Each month we have a Fast Sunday at my church (I’m Mormon). Kevin asked what we should fast for (2 weeks ago) and I said maybe to know what to do for my disease. Also, I am very indecisive and especially when it is with deciding medications that may increase my risks of cancer, get sick a lot more, possibly affect Ryder, etc. I never used to research medicine until I had Ryder. I guess that is what you do when you are a mom, worry more and research things more haha! So we did and then I decided I should bear my testimony. I can’t remember the last time I bore my testimony but it has been a long time. I used to think of things I would say before I got up to the pulpit to bear it but then I learned about that one scripture that says basically “Don’t think of things to say before hand, go up there and you will know what to say.” Don’t you like my Ashley scripture? Haha. Anyways, that is the gist of it. So I started doing that and whenever I do that, I feel like I say random things and finish lol. So I go up there and mention things like “Trials make you stronger. You will only be given what you can handle. Bla bla bla.” So I say I have been having health problems and then realize whenever people say that in church, I am always like “WHAT?!” and super curious. So I can’t say, “Ankylosing Spondylitis.” Everyone would be like “Huh? What the crap?” So I say, “Arthritis of the spine and it affects other things too.” Then I realized I didn’t really say what I wanted to say when I was done. So I hope people got the gist haha.

Answer To Our Fast: So cool thing, my cute friend, Lesley Thalman’s mother-in-law Cyndi, is in my ward, and pulled me out of Relief Society. I had no clue what she was going to say and then she said that she has been working in rheumatology for 11 years! She had actually just talked to Kevin in the hallway as well about me. She has been giving infusions to patients for that long. She knew EXACTLY what I had when I said “arthritis of the spine” over the pulpit. She wanted to make sure I was seeing a doctor and I was. She mentioned that 2nd opinions are great and highly recommended one if I was interested. Kevin and I had actually been talking about getting a second opinion because basically the only medicines my rheumatologists keep going back to are biologics [Humira, Enbrel, Simponi, Remicade (there are TONS of commercials and magazine ads for these so you may have heard of them)]. Those medications are very hardcore and can increase risks of cancers so I am kind of scared of them. I told her I wanted to get a second opinion but didn’t know of a good rheumatologist. I had googled trying to find some before and didn’t really find any others nearby other than my current ones, unless I wanted to drive to Denver. There are just not that many rheumatologists out there in comparison to other doctors. She told me about her office and the rheumatologists there. She said she could squeeze me in to see one possibly even that week. Normally you have to wait months to see one if you are a new patient. She said that she thinks that aggressive early treatment is best especially because you can’t tell if a patient is going to fuse or not. Biologics (to my knowledge) are the only medicine that can halt or slow the progression of the disease and stop the fusion. They can also sometimes put your disease in remission! So I was very excited to hear she knew about my disease, as no one does, and felt it was definitely an answer to our prayers. I am glad she was in town, in church, and happened to listen to my testimony! Seriously awesome.

The next day I started getting my records from my other rheumatology office (so awkward haha but I was sneaky about it) and she scheduled me an appointment with a great rheumatologist, Dr. Levine. She even brought the new patient forms to my parents house which was SO nice! I couldn’t believe it. She brought pamphlets on Humira, Enbrel, and Remicade and I looked through them. It is so hard to know if you should start those medicines! You can either give yourself shots every 2 weeks (Enbrel or Humira) or get a 2 hour infusion every 6 weeks (Remicade). Also, usually you stay on these meds for the rest of your life, yay! You could potentially get Lymphoma or other kinds of cancers from taking these medicines. The medicines also suppress your immune system so you could get sick more often and for longer. You cannot get surgeries or take antibiotics while on them so you would have to stop the medicine if necessary. Also, you cannot be pregnant on them so I would have to stop before I try to get pregnant again and hopefully get pregnant quick otherwise I could be in a lot of pain again! Sometimes AS can go into remission while pregnant. Too bad it didn’t go away fully when I was pregnant with Ryder! I learned that you can take Prednisone when you are pregnant so that is good to know. You also get your blood work checked all the time while on these biologics because they have to monitor you closely. If you get an infectious disease it can be VERY bad while on these because your immune system is basically very weak.

NEW Rheumatologist: I was SO excited to go to this appointment and meet Dr. Levine. Unfortunately, Kevin was out of town, so my mom went with. She was curious how he was because she has been seeing a rheumatologist for inflammatory arthritis (for years) and maybe would want to switch if she liked him as well. The rheumatology office is called The Arthritis Center of the Rockies and is in the North wing of Medical Center of the Rockies (where I delivered Ryder). That whole hospital and area is brand new so the office is super nice. We met with him and he looked over my records, MRI’s, and X-Rays. He did agree that he thinks I have AS. He seemed to be very on top of things and helped come up with a plan. I was to wean off Prednisone (my steroids- they are bad to be on long-term- can cause diabetes, etc.) and start Diclofenac (75 mg, 2x/day). Diclofenac is an anti-inflammatory and safe for nursing! I am to come back in 2 weeks and see how I am doing. He wants me to try Humira or some biologics. He said it could be a game changer! He said I am very low risk for the side affects of the biologics and acted like the shots are not a big deal, haha. Ummm yeah! He even said Humira is safe to take while breastfeeding (even though the company says do not take while nursing- got to cover their bases for liability purposes)! That is exactly what my lactation consultant, Becky says! Regardless, biologics aren’t the most studied and oldest medicines out there. They have been around for 15-ish years, definitely not as long as others, so the long-term affects aren’t really known. Well, they know some, but I mean without years of data, you can only know so much. I am also at the point where I am ok to stop nursing Ryder because I have to take care of myself in order to take care of him. I was about to start weaning him a couple of weeks ago but decided to wait until this appointment. I also have a bunch of frozen milk in our chest freezer so Ryder could probably go a little longer on breast milk. But the good thing about Dr. Levine is that if I am in pain, he doesn’t want me to continue on for months being in pain, but he wants me to try something new until we figure something out! He is aggressive and proactive. At this point, I think I am going to keep going to him.

sfdsdfsfdsfd

The next debate is to start the biologics or wait a little longer! The thing is, I really feel like I may go on them some day in the future, so I don’t know if it is beneficial to even wait. We shall see. I do know sometimes if you start and stop them, and start them up again, that sometimes your body doesn’t accept them as well and they aren’t as effective. That is a big concern for me.  I will go see him on May 8th and Kevin is coming with!

It feels good to finally have this finished! I feel like I needed to write about it for at least my sake.

Question for anyone with autoimmune diseases:

Are you on biologics? If so, which one (Humira, Enbrel, Remicade?) and are you having any side affects?! What do you think of them? Were the shots hard in the first place and did you get used to them?

4 comments:

  1. Good girl taking care of yourself and I'm glad things are looking a little better than before! We actually just started giving Jackson formula as I am starting to dry up... Kind of a bummer, but he seems to be taking to the formula. Do you know what kind you're going to use? I'm still trying to find one.

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  2. Thank you for your honesty and bravery in sharing (and in going through!) all of this. I had never heard of AS, but do have Graves' disease and had Crohn's disease in the past. Autoimmune disease is so hard. I also struggled so much with breastfeeding (and now EP) and was just amazed that you and Ryder got it figured out.

    I'm dairy-free right now, which everyone says makes them feel amazing, etc. but I haven't noticed much difference. Elimination diets are challenging and take planning to eat well. Acupuncture can be expensive, but is pretty amazing if you decide to try it.

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  3. You are such a strong girl. I really admire that about you. I'm not sure I would be able to be that positive about it all. I'm glad things are looking up though! =)

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  4. AS sucks for sure, I am really sorry that you have it and that you've had such a crappy deal with it. I too have AS and have already given birth to my first daughter and battled through the flare up with breastfeeding and no drugs and am now pregnant with my second child and I am very, very scared.

    The hardest thing about AS is that people don't see the disease and don't understand the pain. We look fine from the outside. I have it bad in my neck and I get blocked vertbrae all the time which gives me dizziness as well. I also suffer from iritis and uveitis and have lost a considerable amount of vision in my right eye because of it.

    I am sure I will get chance to discover what other symptoms/difficulties we share as I follow your blog but I just wanted to say that whilst I was breastfeeding my daughter and faced with a major flare up, I did opt to go dairy and gluten free and was successful for 6 months. It did greatly reduce my pain and after months of extreme pain I felt great. However, as you say, it's really hard and I live in France and love bread and cheese and after a while I pigged out and that led to a major flare up with me having severe uveitis and having to go to hospital everyday for injections into my eye plus the steroid drops every ten minutes... I am now going back gluten free at least for pregnancy in a hope it will help me through it.
    good luck x

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