Today has been one of those days where your body reminds you that your still sick! So sometimes you just have to know when to give up and let your body rest. The last few weeks have been more than challenging and its times like these that make this illness so challenging. This won’t change how I face my disease just slow things down until I regain my balance! What’s really important right now is to rely upon my support system that’s in place. Family and fellow advocates are right there if I need them and I’m so lucky to have them there for me.
In recent weeks I’ve been having a lot of problems with not only flare ups but brain fog has been really bad. I have to admit that time for self-health and healing hasn’t been what it should be and I need to get things back on track. After eleven years I’ve learned really well to recognize when somethings not right, and that I need to get back to the basics of managing this illness. It’s a reminder that as much as quality of life has improved that I’m still dealing with a beast that can derail you at a moments notice if you don’t take care of yourself!
Chronic illness doesn’t take time off and so you have to make sure that your staying on top of the things that control the symptoms! Especially with an illness like CRPS where something so little can set off a major flare up. It seems as if CRPS has decided to turn things up a notch so I need to turn up my defense systems as well. That means a whole lot of self care and then turning to the biggest defense system in my life in God. I can’t say enough how much strength I draw from Him when things seem impossible! In fact I don’t often say enough how He’s helped my family and I through this journey.
Am I having a rough go of things right now? You bet! I feel at times as though I could crawl out of my skin. At times my nervous system goes crazy and the emotional swings I’ve felt in the last few weeks have at times been really hard to deal with! If I could tell the gerbil in my head to stop running on his wheel then I would. What doesn’t waiver however is my positive spirit! You see in order to fight this illness I need a small army to go to all the different areas that are at war in my body. Just like an army mobilizes various units to go fight in various regions or areas of a war, I have to do much of the same with my CRPS. I send one unit to deal with the pain and another to deal with the mental area of the fight. Then lets not forget that I have to send a unit to fight against my nervous system.
Mobilizing an army in this way takes a born leader one well versed in strategy and the ability to get the job done. God is that leader to me! His ability to strategize and bring victory is unmatched! When I’m battle weary He sends help to the areas I need provision in order to allow me to regain my strength to continue on. You have to have trust and confidence in a leader, even though sometimes the battles that you fight and where you find yourself being led don’t make sense. I have to have complete faith that God knows how to take on the enemy that’s trying to wear me down and win this battle. Your best line of defense is being under the leadership of someone who knows how to outsmart the enemy!
So with that being said I want to leave you with this one thing to think about!
2 Samuel 22:33-41
33It is God who arms me with strength and keeps my way secure. 34He makes my feet like the feet of a deer; he causes me to stand on the heights. 35He trains my hands for battle; my arms can bend a bow of bronze. 36You make your saving help my shield; your help has made me great. 37You provide a broad path for my feet, so that my ankles do not give way. 38I pursued my enemies and crushed them; I did not turn back till they were destroyed. 39I crushed them completely, and they could not rise; they fell beneath my feet. 40You armed me with strength for battle; you humbled my adversaries before me. 41You made my enemies turn their backs in flight, and I destroyed my foes.
Who do you want leading your battle as you fight through adversity? Mine gives me all of this and more!
Changes are in the works! Over the last couple of weeks I’ve been looking at how I can make some changes to this blog for the better! Don’t worry! If you read my blog on a regular basis the guts of the blog will be almost the same but I will be changing the layout and adding some other things to the site. There are a few reasons I want to make some changes but I also want to update its look. I know I’ve been saying that I’d do this for a while now but it just hasn’t been high on the to do list!
If you have any suggestions of what you would like to see on my site then please drop me a line at firstname.lastname@example.org and maybe I will consider it. I just really feel that change has to happen and that if I’m going to do my job as an advocate for CRPS and chronic pain then I have to change a few things around. In doing so it benefits you the reader. Not only will it keep you informed about this journey I am on but I will try to provide you with resources and other information as well.
Over the last year I have been surrounding myself with others with chronic illness who are firmly entrenched in advocacy and have an abundance of information at their fingertips. I’ve been sitting back wanting to make changes with my site but just didn’t know what those changes were going to look like. When people come to this blog I don’t want it to read like a medical journal. If a person is newly diagnosed I want them to not only relate to my illness and know that they are not alone, but know they can come to this site for information as well!
If you follow my blog because you want to follow my journey then your in luck because that will always be included in this site. Its why I started this site and will always be the building block of this site. I’m just looking at ways that I can freshen things up and widen the range of people that my site reaches. Its hard to believe that its been ten years since diagnosis and six years that I’ve been writing this blog. Over that time there have been over 400 posts put up expressing every emotion under the sun. It’s gone through all the different chapters that I’ve been through on this journey with CRPS!
Its been a long journey to this point and I feel as though a new chapter is starting. When I look back at those first posts I see a person who was scared and unsure of what lay down the road. Today even though I still fight intense pain and battle this disease, I’m filled with confidence and know that God has a plan and purpose in all this for my life. I feel as though that next chapter is starting and even though I’m still not sure about the contents that will make up that chapter I’m starting to move ahead anyway. I’m just standing in belief that God is going to show me what that content is going to be.
What I do know is that there has been this shift within me and I want that to start coming out more in my writing. It doesn’t mean that I won’t be real with what I write and tell you about how I’m struggling or feeling on any given day but it does mean that I want to shift how I write a bit as well. I’m still trying to figure all of this out and so please have a little bit of patience if every so often my posts seem a bit scattered. I guess what I really want to say is that if I want this blog to accurately reflect the journey that I’m on and that again requires some change.
When I started this blog back in 2010 my goal and focus at that time was really to just get my emotions out. It was a way for me to express how I was feeling at the time and was a creative outlet to help me. Today it has become so much more than that! Its become a way to share my story and hopefully help others navigate through their storms. Most of all though I want people to see that in ten years of dealing with this illness one person has been responsible for getting me through it. God!
Its been one of those weeks where the needle on my gas tank has been running on empty! My pain level has been hard to manage and its taking everything within me to get through every day. Some days it feels as though I wake up and I just don’t have anything in me to give. I ask myself how I’m going to find the energy I need to get through that day. This is a fight I live day by day and some days are easier than others. Sometimes my tank is running on empty and others its full and getting great mileage. So like when you get into your car to go to work, I often find myself checking my gas tank to see if it needs filling.
Chronic illness can suck your tank dry and so you need to be checking the gas tank on a regular basis. I check mine every morning and for me that means having a conversation with God asking him to fill my tank. The last thing I want to do is run out of gas! For anyone battling CRPS or any other chronic illness you know that this can happen very quickly. Over the holidays I’ve had to fill my tank numerous times but by having that five minute conversation with God every morning I ensures that I never run out.
Its more than just checking to see if I have enough gas in the tank. There are other things that I need to check out with my car. Every so often you get the oil changed and you check the belts and all the other fluid levels. So I have to do the same thing with my chronic illness and check to make sure I’m putting all my different tools I use in order to manage my pain into place. I make sure that I add anything else that I might need to into that conversation I have with God. So maybe every once in a while that conversation with God is a little longer than five minutes.
As well as an oil change you have to have things like tune-ups and tires rotated in order to keep the car operating at its best. Doing all these things are all a part of a regular maintenance plan for your car. With your illness you have to make sure your doing the same things. You always hear mechanics saying that if you do the preventative maintenance then your car will run longer and last longer. Well the same holds true with your chronic illness. If you follow the plan your physician has set out for you it will make things more manageable in most cases. That’s not to say that you might have periods where things are difficult. It gives you the best chance at managing your illness more effectively and with as few symptoms as possible.
It can be so easy just to drive our cars into the ground not doing the things we need to do to maintain them! There are so many different ways that we can stay on top of the maintenance, yet that’s easier said than done. When your hurting all the time and all you do is spend time fighting your illness, it can be easy to forget those things you need to be doing on a regular basis. That’s why checking in with my mechanic (God) every day helps to keep everything running the way it should. Especially around this time of the year when it can be so easy for my body to break down!
I’m looking forward to the New Year and a much better year with my health. Looking back this last year was extremely tough both physically and mentally! If it wasn’t for those constant conversations with God to get through it all, my bolts would have rattled loose and my car would have started to break down. I wasn’t anticipating that it would take this long! Like when you have to rebuild a car engine I have to rebuild my body and that doesn’t happen overnight! I’ve had a great mechanic that’s been able to make sure all the parts are in place, and all the fluids are full. I’d highly recommend this mechanic because He does great work!
The past 72hrs has been challenging to say the least! Several trips back to see the surgeon and the staff at the implant clinic haven’t yielded a lot of answers. If you hadn’t read my last post you may not have known that I had my surgery to remove and relocate the second of my two implants. It now sits under my left clavicle and I’m happy with where it is, with any luck it will work out better in this location. During the surgery we ran into some problems and found out that the site had become infected, and we are trying to understand if it might be related to the last infection that I had.
Everything was cleaned out during the surgery and I’ve been put on antibiotics and will undergo further tests next week. We are hopeful that the treatment will work but it’s a watch and wait type thing. The surgeon will run some tests to make sure that nothing has gone to the spinal cord as well. It’s one of those kinks that I didn’t need thrown into the mix but I guess it is what it is! The pain is super intense at the moment and I’m doing my best not to lose my mind. I’m on day four and hopefully in a day or two we’ll see more improvement. Yesterday I couldn’t understand why the pain was getting worse but after talking with the staff at the implant clinic things now make sense. I won’t go into detail but after talking to them about what was done during surgery, I have a better understanding of why all the extra pain.
My intentions were to finish this yesterday but that just didn’t happen. I’m having a really hard time at the moment dealing with all of this. Going into this surgery I thought I was prepared mentally but clearly I had that part wrong. I can deal with the physical pain but at times everything gets to be to much and I just want it all to be over! It’s also taking it’s toll right now on the rest of my family, with having to make lots of adjustments while I get better. Sometimes that can be harder to deal with than having to deal with recovery itself! It isn’t fare that my family has to be affected the way that they are. At times like this I get angry at the CRPS and the changes it’s caused in my families life. This family has stared adversity in the face before however, and like all those other times we will get through this one as well.
If anything all of this drives me more to beat this illness, and in order to do that I need to trust that God is going to help me do it. It’s been a rough week and my emotions are running on high! Have you ever had that dream where you need to take a breath but you just can’t. Over and over in the dream you gasp for air but you just can’t seem to get the breathe until you wake up. Well that’s kind of how I feel this week, I’m having trouble getting my breathe. Once I open my eyes and get that breathe I know everything will be ok. It’s just going to take a bit of grit and determination to get though all of this.
All of the feelings set aside the surgery itself is going to help improve things for me. I already know without a doubt that moving the battery to where it is now was the right decision. I have to admit I didn’t like the thought of where it was going to go. Sometimes I just need to listen and not question! Thanks for listening to my frustrations in today’s post, sometimes just laying it all out there helps.Well enough rambling for today and besides I need to rest up.