A disguised Tender Mercy?

Finally...Answers!

On Thursday Aaron finally called in to his MS doctor's office and they got him an appointment for Friday at 11:30. I was relieved that he got in and was going to get some help so quickly. Aaron told me he figured it would be a quick visit and nothing more, thus encouraging me not to come with him. I know he really didn't want to have to make my mom watch our kids and he of course didn't want to stress me out by trying to get there in time. But my mom of course offered to take the kids and when she said are you going to the appointment I felt really strongly that I did need to go! I felt a little silly at first that I was going, just because I wondered if it really would be this short appointment where they would say yep, you are sick and you need to get and infusion and then that would be it. I also didn't want to be the annoying wife who is way over protective and buggy every time Aaron went in for a visit. But, I continued to feel really strongly that I needed to go.

Friday morning came and I had a few hiccups in the course of getting the kids to my moms and getting to SLC on time. I almost gave up twice and thought maybe it'd be easier to stay home. (I've been doing that a lot lately, staying home instead of trying to deal with the hassel of dragging the 3 kids somewhere) This time I told myself "No, you are going to go and you are going to make it work. Aaron needs you to be there whether he wants it or not. It's not about you, it's not about the struggle you will experience to get there, it's about you being there for Aaron. So I worked through the kinks and actually made it there in time. of course to get there on time I couldn't feed the baby before getting into the Dr. office. Of course once there our little guy was starving. Now I am not a huge fan of nursing in public. But, what could I do? and of course our little guy was not happy about being covered and how I was holding him. It was a battle. I almost burst into tears right there in the waiting room. Why had I come. Aaron was stressed and I could tell a little embarrassed that here we are in the quiet office with other sick people and we brought a screaming baby! But I again had the feeling that who cares! You need to be there. If these people are bugged by you nursing or the baby crying then so be it. This isn't about you Jamie. Stop making it about you and your comfort. Of course mid feeding the nurse came and escorted us back to a room. Which meant our little guy getting made again. Once in the privacy of our own room I felt a little better. Tman fell asleep and I was able to thankfully focus on the appointment. It ended up being a huge help in the end that I was able to nurse him to sleep. Anyways, in came a cute, young PA named Courtney. I knew I liked her already for 3 reasons: 1. she was about my age and dressed in fun colors 2. When I apologized for nursing in front of her she told me that she thought it was great I was and that I better not worry about others because who cares I've got to get my baby feed (I love advocates for nursing) 3. I could tell she knew her stuff.

The appointment began and Courtney got right to point of the visit. She asked symptoms, checked for new ones and got a brief history. Then the answer to my prayers began, she asked us "Do you have any questions?" Little did she know she opened the flood gate. Little did she know that the 500 questions were dying to get answers too were going to coming pouring out in the next hour. I wonder if she would have asked that question if she knew the 5 minute appointment would change to an almost 90 minute one. Oh well, because it was just what we needed, what I needed and I know what Aaron needed. I don't remember the exact order or the exact answers/questions given. But here is a summary of what I learned and the questions I finally received an answer too:

1. While on the medication will he still have MS attacks or is it not working?
The medication does not cure him of MS. It slows down the process and can put people into a remission. But he can have flare ups and continued symptoms while on the medication, especially when he is in situations or places that cause him to trigger the MS: heat, stress, exhaustion or an infection/sickness of some sort. Is the medication working or not working? We can't really know for sure until we get another MRI and compare it with the previous years MRI. Which means MRI's yearly unless he continues to have a lot of problems then he will have more MRI's. Thus, mostly likely the reason he was having problems at this time was because he is extremely stressed right now and exhausted. This causing him to have a flare up mostly likely in an area he has already had problems with, thus the same symptoms that he had before. They'd be more worried if it were new symptoms that he'd never had before. But, that doesn't mean it isn't new damage or problems. Again, we won't know until the MRI. At least we can probably guess it is just a flare up of old problems due to triggers.

2. I asked about every symptom he has had and where it is coming from...

Eye Headaches: Normal MS symptom. Real issue is if the eye headache continued for a long period of time not going away, or if his vision became blurry. Then it would be a big problem and need to report it. As far as a eye headache here or there, its normal. Could be MS related or just eye strain. We just need to watch it and stay on top of it.

Dizziness: Normal as long as its not effecting daily life. If it does start to effect daily life, then we need to once again report it and come in.

Exhaustion: Something he will always deal with and be susceptible to no matter what stage in life. Sleep is vital to everyone, but especially to someone with MS.

Numbness: That is a definite MS flare up or attack and needs to be reported if it comes, stays or gets worse.

Slurred speech: Another definite MS flare up or attack. Can also be brought on by stressful situations. If it continues though and doesn't go away, then once again needs to be reported and taken care of.

Flushing: Not a symptom of MS but a side effect of medication.

Foggy/loss of concentration: A definite MS symptom and struggle that most MS patients struggle with throughout life not matter if in remission or not. If it gets severe it needs to be reported, but will be a lifelong struggle like the exhaustion.


3. He is still having flushing attacks, is that normal? What can we do about them?
It is normal that he is still having flushing. It's not good if they become so severe they are keeping him from functioning. But if they come on due to a stressful situation or randomly some time after taking a pill, then its normal. There are a few things he can so to ease those flushing situations which is eat foods high in fat or with pectin in it. That supposedly helps the flushing to subside or be less. So Aaron is going to try to eat some different things in the morning for breakfast to see if that helps.

4. What is happening to his brain when he has these flare ups?
So there are attacks and then there are flare ups. Flare ups are caused by outside factors that cause swelling in the brain around the damaged areas. Thus, causing the previous symptoms to come raging back. Attacks are when you immune system are once again attacking your brain, but in a new area. The hope of the medication is to keep the attacking from continuing.

5. Is solu medrol necessary? Can he wait out the flare ups?
Solu medrol goes in an helps decrease the swelling, fight off the immune system and boast the individual. From what I've heard I think that really since a flare up is not an attack on something new, you could wait the symptoms and flare up out, but the the infusion of the solu medrol helps you feel better faster and gives you a boost and protects you up to 6 weeks. Since Aaron is going to be stressed and dealing with a lot the next 6 weeks, we decided that he should definitely get the infusions and not try to wait this flare up out. The danger in waiting it out from what I gather is that we don't know for sure if it is a flare up or an attack. So its best to always at least report the symptoms and discuss with them what they think. Courtney was very encouraging that Aaron get the infusions.

6. Vitamin C... Aaron has been religiously taking vitamin C since he was diagnosed. But, Courtney was the first to open our eyes that really that wasn't the best thing to be doing. I guess when you think about the drug Aaron takes it is used to suppress the immune system to keep it from attacking the brain. Vitamin C is to help boost the immune system. Thus, they are fighting each other. Does that mess the medicine up, who knows exactly. But, he should stay off of it unless he is sick. Then he needs the immune system back up so he can fight the infection before he gets sick and then causes problems to arise because he is sick which isn't good for an MS patient. I don't totally get it, but needless to say, we now know and Aaron is not longer taking his large does of Vitamin C!

7.  Diet... what is really necessary and what is not?
My big question was the diet research. We've been bombareded with people who swear that this one diet solved their problems, while another says, no stop eating this and starting eating that will help. I've been stressing big time of what to feed Aaron and what to limit in his diet. It really has started to cause me anxiety. Courtney bluntly told me how it is. Anyone will feel better when they start eating healthy, anyone! Anyone will feel better when they stop eating processed crap, even the regular normal person. So to say that it cures MS or puts it into remission is a false statement. Now, eating healthy can help any person feel better and especially one who has a autoimmune disorder, but there is balance in all things. She said most people who have an autoimmune disease usually has a gut disorder or something else tied into it. Thus, when they stopped eating gluten or other things, they started to feel much better. But, it didn't cure them or solve the autoimmune disorder, it just helped with the symptoms that the gut problems were causing. So, Courtney advised. Eat a well balanced diet and keeping away from foods that make you feel yucky! She said, if you notice a food makes you sick, then don't eat it. The healthier you eat, the better you will feel. She mentioned that it takes time and it also is a process. To slowly delete foods from the diet one at a time.

8. Can people really get rid of MS doing natural things without the drugs?
Another thing we get told by everyone is how certain natural things work for them or how they aren't doing anything for their MS, that medicine isn't necessary. Ok, again Courtney put it out there in blunt terms. I'm not going to get into the details, but there is not cure yet for MS. There are ideas out there, there are good oils and natural things to help ease symptoms, but there is no cure. The medicine a long with a healthy lifestyle is your best bet in staying healthy.

9. Stress: If we could only delete it from Aaron's life, I think we'd see a lot less symptoms. It's not going to happen, especially with my little Aaron. He's a stress case! So he's got to start finding coping mechanisms that help him relieve or reduce stress. She gave a us a few ideas and a prescription that could help if he is up for it. We will see how that goes.

10. Normal life: Aaron asked about his life, his future. Courtney gave it to us straight this whole time and she didn't hold back on this one either, which is good.

1. Yes, Aaron will be around for a long time. It is not a death sentence and he can live a normal life.
2. He has to take care of himself. He has to report and get the help he needs, and if he does, they can maintain and help him stay healthy. People don't die from MS they die from not taking care of the symptoms and things that MS can create.
3. He is a man, men with MS unfortunately have it worse then women. They do not have the same protection from hormones that women do. Men have to watch themselves and stay on top of things more.
4. Things can and may happen, but the likely hood is decreasing by a lot with the new advances in medication and treatment.

Overall, Courtney bluntly told us how it is. She couldn't stop stressing the fact to Aaron that it was okay to feel overwhelmed and still scared and stressed about the disease. Though everyone else has gone back to normal life, ours will never be the same. It will take a long time to find that new balance and we will always have times when we are scared or fearful. It's only been 9 months, we just had a new baby, Aaron is working full time and doing a dissertation. (He also has a lot of other things in life like a calling in the church and a busy young family) He is going to be stressed and overwhelmed. It will be harder than your average Joe. It was so good for Aaron to hear someone else say it, to say you are doing a lot, I'd be stressed too, you are amazing for hanging in there and plowing forward.

So the appointment ended. Aaron got some helps with sleep, stress and then a time for infusions. We walked out in amazement. I was actually so grateful he had this flare up, because finally, finally someone talked to us and let us go at it with all our questions. I felt like I was on cloud 9 after that appointment. It was truly a disguised tender mercy! I'm so grateful I went. I'm so grateful I was there to be the annoying overpowering wife. I talked more than Aaron. I was glad Aaron got it told to him bluntly and that he heard that he is doing a lot and that he's not a wimp or failure. I'm so glad my mom suggested I go and thank you to her and my dad for watching the kids so I could. I'm also so glad our little baby slept the whole appointment, even though I had to nurse in public. It was all a huge blessing and answer to our prayers. Did it solve his MS... sadly no. But, we know more now and with this new knowledge can better take care of him. I'm going to promise right here and now that my sweetheart will be well taken care of and that with me by his side we are going to keep him healthy and around for a long time!