Second Wind

There are definite ups and downs in this fight against PCS. I waver through stages of “grief”. I am in total acceptance of it some days and looking for ways to live with it, and other days I examine all my symptoms and see what I can do to beat this thing (even if it's unbeatable).

My husband and I celebrated our 10 year anniversary by going out of town to Toronto for 5 days. I couldn't believe how far I could push my limits. Without the stresses of every day life, it was 3-4 hours before my symptoms reared their ugly heads.

When we got back into town, it was a huge wake up call for me. My limitations were set right back to 45 min – 1 hour before my symptoms kicked in. I've woken up with bad headaches with nausea and fatigue almost every day since I've been back. If I could live stress free and only experience physical limitations for 5 days, how can I make changes to my life here to accomplish some sense of “stress-free” every day?

I decided that I might need some help. I did some research and found a counselors group that takes my insurance and made an appointment with a psychologist. I see her next week to see if I can find ways to manage my stress more effectively. Some of you have said to me that this has helped you or that some of your neurologists have suggested that brain damage can include stress processing limitations. I am hoping that talking through things can help me to have less stress in my every day life and longer periods of time to function daily.

I also hired someone to come and clean my house. I can pick up the house pretty well and as a family we stay on top of the dishes and laundry, but my house just doesn't get cleaned, and it makes me crazy! It's one of those things that adds to my stress. I try to clean sometimes and it hurts my body so badly. I was vacuuming last week with a pounding, spinning head, and I paused to vomit when I just started laughing at myself. Why hadn't I been able to decide to get this help for myself?

It's so hard to look at myself and not only accept that I need help for some things, but that I'm worth it enough to be helped. I do our finances and am so tight with the money, trying to pay down debt and get to a place where we can start saving. It's crazy to me to try and spend some of that money on myself. A wise person in my life made me turn the situation around. She said, “If it was your husband, wouldn't you do everything you could, no matter what the cost?” She was right. It helped me to see that he just wants me to be better and the less I do to make that happen the worse he feels.

I hope these changes can give me longer periods of “ok” time where I can function somewhat normally. With school starting tomorrow, I know that will also take a lot of my stress away. What are some other suggestions for stress management and getting help that you guys have found?

Doctors, Doctors, Doctors....

It's been Doctorpalooza these last couple of months. It's strange going through “breakthroughs” and not knowing if these different treatments are helping or not. It all started when I heard about the Bowen Technique. I'm going for my 6^th treatment today and people keep asking me if it's helping or working. I'm not really sure how to answer that.

The therapist told me that my entire body was a shift out of alignment and spent the first few visits aligning the right side with the left side of my body. She also fixed the tone of my muscles so that the ones that were worn and flat became springy and rounded again. She fixed my neck almost completely and I may never have to go for physical therapy for my herniated discs again! WHOO HOO! She released the muscles from the nerves and we are left with where we are now.

She saw that my jaw was out of alignment, but didn't want to adjust my jaw without my dentist seeing me first. He saw me 3 weeks ago and did a consultation with impressions and is working on a nightguard for me and is going to figure out how to adjust my bite so that my jaw is in a relaxed state rather than always in tension the way it is now.

I have felt really worn out and had lots of headaches through all this adjustment. I feel like getting this stuff squared away will be helpful for me when it's over, but getting through it has been really tough. I see Dr. Leddy (the UB doctor) next week and also my dentist that same day. The following week I go to Dent to see my neurologist. The Lord has put me in good hands with so many providers who understand my condition and are trying to help even after 2 years.

During this tough time when they are all working on me, it feels like it would be easier to just give up fighting this sometimes and give in to the PCS. I'm weary of fighting against it, but I know that it's better to fight it. Please pray for me through this tough time. Please pray for encouragement for me and my family, for endurance for me and all the doctors that are sticking with my desire to fight, and praises to God for all the amazing things He's done through these past 2 years of trials.

I heard a good analogy the other day on the radio, “God is the shepherd and we are the sheep, but there are also sheepdogs (trials) that keep us in line and on the right path. God cannot control the sheep, but can guide them with the use of the sheepdogs to go the right way.” This was so encouraging to me and helps me remember that there are reasons for this stuff.  

In the crest of the wave

I've started and stopped a few posts this week trying to figure out how to say what I want to say. I've been struggling, but have come through the other end with some encouragement. There are times I get caught up in my own private pity party and I can't break out of it for a few days.

People were bothering me with everything they said, “Well, you look good to me”, “I can't believe you are sick, I couldn't even tell”, “I saw a new treatment for migraines in the paper today – just eat a Dove Ice Cream bar when you start to get one”. Really, people? I know they mean well and are just trying to help or encourage. They just don't get it.

I stayed in that pissy, down attitude for a solid 5 days, but I'm heading out of it steadily. My health is improved so much from 2 years ago when this all first happened. I understand my body and what has happened to me. I have a pretty good handle on my limitations. My relationship with the Lord and my family is fantastic. I guess I can call that “living with PCS”.

There were so many things I asked God for before this happened. Maybe, in part, this is some of my way out of those things. I can only speculate what the King of Kings has in store for me. I wanted a way out of the mountain of debt we had put ourselves in. I wanted to be closer to my kids. I wanted my husband to lead our family and be the man of the house. All those things are happening now. I don't like the way that they are happening, but they really are happening.

I'm home with my kids every day. I am not really able to fully enjoy them, but I can watch them live each day and take their reports in small doses. I can see them becoming more and more independent, and know that they understand how I feel and how to have a relationship with someone with a disability. I get to spend every day with them - no matter how crazy they drive me ;-)

My husband has really stepped up. He works full time, is in the Air Force reserves, takes care of the house, and leads us to Christ and in our church. He has become the man of my dreams, a man like David from the bible, a man after God's own heart. He slips up, he's not perfect, but he has risen to this challenge and changed in ways that he might not have if it wasn't for my PCS.

We were approved for disability after 2 years of waiting. The lump sum back payment went immediately on some of our debt. We are well on our way to paying off so much of our debt. We are being faithful in our giving to the Lord, even when we didn't have much to give. He has been faithful to us financially and is returning much higher than any bank ever could.

There are more little things, but I am trying to focus on the good in my life. The other stuff is just stuff. There is a fresh, new body waiting for me with my King when this life is over. I will continue to try every treatment I hear about (except maybe the Dove Ice Cream Bars). I will keep my treadmill treatment up, and keep seeing all my doctors. I am fighting against this, but also trying to find a way to really live through it.

I would love to hear about the good things that you guys have experienced through your PCS. Have you met someone you never would have talked to? Have family members surprised you? Have you found a deeper relationship with yourself, others, or the Lord?  

Faith and Healing

Discussions about faith and God in our lives are always welcome here. This post will serve as a place to continue that type of discussion. Feel free to lovingly speak the truth here.

Our job that Jesus gave us was to love the Lord our God with all our hearts, minds, soul, and strength and also to love others as we love ourselves. Little differences in churches and traditions shouldn't be forces that drive a wedge between us. They can certainly be interesting to discuss.

I believe that I am saved by Christ, and not by my works. He is what gets me through each day and how I live with the pain and struggle that I am in now.