6 THINGS TO DO WHEN YOU’RE IN A HEALTH CRISIS

Ok, so unfortunately in dealing with Multiple Sclerosis, as is with many other chronic health issues, you can have what is known as a flare-up of symptoms. There can be minor flare-ups that last around 24 hours or less, or they can turn into major flare-ups where they last even longer.

In the latter a lot of times very high doses of steroids (think 1000mg+ for multiple days) via IV are relied on to shut down and reboot the immune system quickly to prevent damage. Damage can look different for each auto-immune disease but for me with MS, the damage I’m trying to prevent are lesions (scarring, essentially) on my brain or spinal cord. I already have a good amount and I’m always trying to keep an eye on episodes so that I don’t accumulate more, which could cause my brain and spinal cord to be unable to send nerve messages to other parts of my body–eventually causing further disability.

I have now had 5 very serious episodes in the last 10 years and I have felt as I was in crisis again even this last week. And so I write this blog post because I so wish I could have read something like this as a reminder when I was going through my own health crisis early on!

#6- Take very good care of yourself physically during this time– try to eat as healthy as possible, drink lots of water and get as much sleep as you can. It will help you more than you could even imagine! Example: my doctor told me in his office earlier this week that I need to be getting as much sleep as I possibly can right now, as I deal with the current episode I’m in. I’m also still doing my ketogenic diet as well, which I believe is helping me too.

#5-Stay positive-this is probably not a good time to listen to the news too much, be on social media more than necessary, be around anything that makes you feel discouraged. This is a time to really stay positive and focus on the GOOD things in life. Example: I keep good encouraging music on in my car so I can be reminded to pray and to think about positive things. I’ve had one particular album playing constantly for the last week with messages like how God is our healer, He is our Father, how He cares for me and is always with me.

#4- Practice gratitude– Anyone who has spent any time around me can probably tell you that one of my top favorite things to do is practice thankfulness. I have found it life-changing over the last 10 years as I have wrestled with my health issues. One of the mottos in our home is: “There is always, always, always something to be thankful for.” Example: I remember when I was unable to use my right arm for a period of time in 2013, being able to use that opportunity to show my kids that I could still find something to be thankful for. I remember telling them how glad I was that I could still use my legs to walk, I could still see with my eyes. It’s amazing how changing our focus can change us! Even today as I was walking into work this afternoon, I got out of my car and felt how weak and shaky my legs were, but then I was able to remind myself that yeah, my legs are pretty weak and shaky BUT I’m so thankful I can still walk, and even without a cane! I can still move my legs at all! My spirits felt pretty uplifted with that thought as  I walked in the door.

#3-Surround yourself with a good support system-DO NOT DISCONNECT OR ISOLATE YOURSELF. Hopefully I made that point clear! 🙂 It is so important to surround yourself with good, healthy people. Ideally these connections would have already been made BEFORE the crisis begins, but called on during the crisis. You will want people by your side who can be honest with you, tell you the truth and truly listen to hear your heart. I know these people are not always easy to find, but I challenge you to pray and ask God to show you who in your life could be that person to you. Example: I have been called “hero” many times during my health journey, but to be honest, I’m not sure that’s fair. I wouldn’t be a “hero” without so many who have stood by my side faithfully supporting me, praying for me, helping me. I think my support system is made up of true heroes, and I am soo grateful for all of them!

#2-Be honest with yourself– this is huge. I’m still learning what this looks like but I believe we can’t properly grieve and move on with our lives into hopefully a place of joy if we aren’t honest with ourselves, and grieve our losses. Loss of health is so huge; it is life-altering, it has shaken me to the core and left me so afraid of the future at times. Don’t be afraid look at your reality and call it what it is, because it is far better than living in denial and not dealing with your pain. #3 (your support system) will also play a huge role in this. Find people who can process with you and help you as you work through your pain and weep possibly at times, over the suffering you’re experiencing. Example: Some of the most powerful times in my own health crisis have been when I’ve been able to be honest and work through some of my pain with close friends in my life. It brought such a sense of relief and peace as I was able to safely share my heart with them and they listened and came close in my suffering.

#1- Lean on God– This is #1 intentionally because we all need something to lean on that is bigger than ourselves. When I’m dealing with fear of my circumstances in life, especially in relation to health, it brings so much peace to my heart to remember that my God is bigger and stronger than me, and He truly has no limitations. Nothing is impossible with Him. Remembering these things keeps me hopeful that no matter how I feel, He holds the whole world in his hands and He is working in my present situation, whether I feel it or not. Example: when I’m feeling overwhelmed and stressed about life, I like to walk outside at night and look at the skies. It calms me instantly and connects me with God. It reminds me of how powerful he is to be able to hang the stars and the moon in the sky…..and to care for me.

If you do the things I’ve laid out above, I guarantee it will help reduce the sense of powerlessness and hopelessness in your situation, as I find it does with me. It gives me a plan of action and empowers me to begin to find choices and changes I can make in my life, instead of feeling like I am completely at the mercy of my situation.

Finally, if I could speak any word of encouragement to you as you walk through your own health crisis, it would be to remember this truth: This is only a season. Yes, you may be dealing with this issue the rest of your life as I well may be also, but what you’re walking through right now will not always feel this way. There may be hard days but there also will be much joy ahead for you. Brighter days are coming. Believe that. 

 

***Feel free to give me feedback on this post via comments or messages! I’d love to know if you have anything you would add to this list!

Advertisements

Humbled and deeply loved

light-in-heart

 

 

It is humbling to experience so much kindness and so many prayers from many amazing people in my life who I know are cheering me on lately. You all encourage me greatly!

It is humbling to take a walk tonight and realize that my 34 yr old legs feel more like a 70 year old’s. They seem to have gotten worse over the last week and I only pray that this will not progress and worsen. My feet feel like I’m walking on pin cushions, my legs felt heavy to lift and more difficult to move and I found myself wondering if I need to replace my cane that never showed up with our stuff after we moved last year….

It is humbling to realize how little control we truly have in life. As much as I am fighting this illness in my head right now, I feel changes in my body that I literally cannot get to stop. This is why I am thankful my trust is in God, because I know he in control even though I am clearly not. He knows my future and is writing my story. Just not sure at this point how in the world it’s going to turn out. ha

It is humbling to have to create a plan for a friend to help out when my husband is traveling again next week if needed. I never dreamed I would be in the place where I would be making decisions like this and having to worry about whether or not I would be able to take care of my children and my home alone without help.

It is humbling to know I have so many incredible people in my life who would do anything for me. Having a support system like this helps me not feel so scared or alone. I am truly grateful.

And more than anything, it is humbling to know how deeply I am loved by God. Even when I am afraid, I know He still has a plan and purpose for my life and in the end, everything really will be ok.

In closing, I went old school today and was listening to Crystal Lewis’s Beauty for Ashes song….it was just what my heart needed. The lyrics comforted me greatly as I felt God speaking them to my heart:

 

He gives beauty for ashes
Strength for fear
Gladness for mourning
Peace for despair

Walking through the valleys….

I know I haven’t blogged in almost a month. It hasn’t been by accident. I literally have not been able to type the words that have been in my heart for a while now.

The truth is: sometimes life hurts. Sometimes it’s all we can do to hang on for dear life. I have felt that way since the beginning of the year, when I finished my last round of IV drugs to help keep my MS symptoms at bay. I was forced to stop them because of some side-effects I was dealing with, that my neurologist was concerned about.

I have felt tossed around like waves on the seas for the last six months.

My faith has been tested and tried. I have felt scared to death and terrified, like I haven’t felt since I was first diagnosed in 2007.

I have looked my fears straight in the eye this year.

It has taken me a while to figure out what my biggest fear is that was burdening me so much to the point of leaving me feeling suffocated and even breathless. Once I finally was able to admit to myself what it was, it was hard to even say it out loud….much less blog about it!

The truth is–my biggest fear with my health is that no matter what I do, no matter how hard I try, even with all the steps I take with my team of doctors around me advising me– I’m going to eventually wind up in a wheelchair, unable to walk any longer.

Wow, heavy stuff right?!

There were a couple of reasons I came to this conclusion, and one of them will take a whole another blog post so I will talk about it next time but the other reason I will mention here is that I have been sliding backwards since getting off of these MS treatment drug Tysabri. Or maybe that’s not true…maybe I should say, I feel as if it has been one step forward, two steps back for the last 6 months, even though I’ve been working on some awesome stuff with my Dr which I believe will have an impact on my health, long term.

I haven’t even had the energy to tell many people what I have even been dealing with in the last 6 or so weeks but as of right now, my feet are partially numb alot of the time lately, and I got confirmed at the optometrist tonight that I do have Optic Neuritis in my right eye and have for a while, we think. This is a brand new MS symptom I have never had in my right eye so it’s a little scary to think of what scarring may be happening on my brain or spinal cord.  You see, I was in pretty bad pain in my right eye for at least 4-5 weeks but I thought I was just having sinus issues. As it stands right now, my vision and the color in that eye right now is easily about 35% less than in the other eye, a lot of the time. (Nerve issues can be inconsistent where things can flare up and settle down)  Things look somewhat dim and squiggly as well as creating some double vision for me since my eyes aren’t working well together. No one knows how long it will last and how quickly if at all my vision will clear up, although I pray it’s quickly and completely!

All of this has has been wearing on me physically, emotionally, spiritually.

I have been forced to take a very hard look at myself, at who God is and at my circumstances. It has been more painful than I can even say. I have tears in my eyes as I even type this thinking of the agony I have felt over the last few months wrestling with my fears and my reality.

There have been many prayers, many many tears, much soul searching as I have come to grips with the fact that no one can promise me that my worst fears will not come to pass. I have felt so desperate at times to cling to some sort of hope from a promise like that, but none of us are powerful enough to make that promise!

The more I try to control my life, the more afraid I am and the harder I fall. 

The good news is, I have finally found a safe place to once again land–and it is this:

I could try and try and do all I can and still wind up wheelchair-bound one day down the road. I honestly hope and believe I will not but I do not know my future!

The only firm place I can stand is in the fact that God is the author of my story, He is the only one who knows what my future looks like, and He loves me more than I can even imagine! 

So the true wrestling in my soul I finally realized is, do I or don’t I trust him? Do I really really trust that He loves me? That He has my best in mind? That if my health continues to deteriorate as I have seen some this year, that He is still good and still has a plan? Do I really believe that?

You guys–these are really hard questions to wrestle with. I know so many of you are going through pain like I am, and having to make really hard decisions of what you really believe. Please contact me if I can pray for you, and know that you are not alone in your journey.

I am so grateful I am now finding a safe place to land in my heart, but every day I have to make that choice–to trust my heavenly Father. To surrender in a deeper way than I ever have to Him and the plans he has for my life. It is the only way I can find true peace.

Thank-you so much to all of you who read my blog, follow my story and bring me so much encouragement. I still believe the best is yet to come, and I hope you can also find the courage and hope to believe that as well!