I'm tired!

I hate being tired. This kind of tired is not your normal "I've had a busy day & I'm worn out" kind of tired. This is the "I'm feeling fine & then bam! I'm so tired I can't think" tired. It's the kind of tired I got in college when I'd been up for 48 hrs cramming for exams. Only I haven't been up that long & I was totally fine 2 minutes ago.

This kind of tired can happen at any moment. I was at Home Depot the other day when it hit. I couldn't remember my PIN number for my debit card. It hit in Meijer Saturday & I couldn't remember what I needed to get. It tends to hit toward late afternoon so I try to take it easy at that time of day. It's a little scary & I'm afraid one of these days it will hit at a totally bad time. I just keep praying & trusting God will keep us safe.

A side-effect of this tiredness is that I'm very cranky. It's very disorienting & it seems that noise makes it worse. And my kids are noisy. Unfortunately, they often get grumped at. I try not to...

So if I'm talking to you & seem to space out, I'm sorry. I don't mean to. I don't know why this is going on & every test i have done comes out normal. I'm working on coping strategies, but until I get used to this & get better at living with, I'm sorry!

It's all in the ATTITUDE!

I've had several people as me lately how I'm doing. I answer "I'm doing better." it's not because I feel better physically. It's because I'm coping better. My attitude is better!

I have a few updates. My skin biopsies came back ok. I also went to neurologist & he says I don't have MS. He says all the fatigue & facial numbness & vision blurriness is just a bad fibromyalgia flare-up. So now I just have to live with the new symptoms & learn to cope.

So even though nothing has changed and I have no new diagnosis, I'm doing better. I'm resolved to pushing through this & trying to get healthier. I'm finding my attitude about all these health issues will either carry me through or break me. So it's all in the Attitude!

Stronger tree, stronger me!

Many years ago when I was studying Forestry, I learned that if a tree is located where it is blown by the wind, it will grow stronger roots & be able to withstand even the strongest storm. Trees that were sheltered from the elements were weaker & often damaged in the stronger storms.

I'm so thankful that God has allowed me to be shaken by the winds of illness, changing plans, a travelling Hubby & many other things. These things may seem unbearable to others who look at my life, but my roots are deep. They are planted in my Savior!

With each new obstacle thrown my way, I've been blown & tossed around. But I'm anchored in Christ! I know that no matter what is thrown my way, He will carry me through. Each trial is making me stronger & more like Christ. I may get battered & bruised along the way. I may get a few "limbs" knocked out of me. This is God's way of getting rid of my bad habits & traits.

But I know that each storm of life I walk through makes me stronger & better able to handle the next one! Because of this, I welcome the storms! I'm thankful for the storms. Without them, I would be weaker. Without them, I wouldn't know the power of God's love & mercy! I wouldn't know that God is trustworthy, faithful & true! I'd be less like Christ.

I love these verses! "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." (James 1:2-4 NIV84)

I may not consider it pure joy as I'm in the middle of a trial/storm. But as I ask God for perspective, I step back and look at my journey. I can see where I have persevered. I can see where I'm growing more mature & more like Jesus. That's when I have joy! For just a second, I see where I've come from & where I'm going! I see that one of these days, my trials will disappear. One of these days, God's work in me will be complete. I will see my Savior face to face & be a perfect reflection of Him!

Until then, let the storms of life come! They will only make me stronger!

Another twist to my life

So, my rheumatologist sent me to the dermatologist because of my facial rash. Come to find out, it's a condition called urticaria. It's basically hives caused by physical stimuli such as sunlight, heat/cold, pressure or exercise. It is treated by taking antihistamines to block the histamine reaction. So something easy to deal with.

The twist comes because I had to have 3 spots, 2 on back & 1 on hand, biopsied. I was not expecting this but very happy my doctor is being so proactive. I had to have stitches in each spot. It affected me more than I thought it would. I've been having some pain & tenderness. I've also been having some moments of fear of the "what ifs". I know God is in control. Whatever the outcome of the biopsies, I know God will carry me through it. But I still have those moments of fear sneak up on me.

I will have the results on Thursday at 8am. So just 84 hours! Then I'll know the extent of this twist...

Still waiting...

Still no answers as to what is going on with me. My spinal tap came back normal, but I have no idea what that means. I have a nerve conduction test tomorrow. It is the last of the testing that has been ordered. Will it provide answers?

Will my doctors figure out why my muscles feel cold & numb and then the next second have sharp electric shock type pains followed by burning? Will they figure out why one moment I'm walking fine & the next I feel like my legs are lead? Will they figure out why I'm so tired? Will they figure out why I have numbness & tingling throughout my body including my face?

So many questions & so few answers...

I wish I could tell you I'm "resting in Jesus" & I'm doing great. I could tell you that, but I'd be lying. I have to admit that I'm not handling the wait very well. I know in my heart that God knows my troubles & will carry me through whatever is going on. But I'm finding it hard to patiently wait on His timing! I'm finding it hard to be joyful in all things! I'm finding it hard not to lash out at my kids & Hubby! Ouch, admitting that one hurt. I'm finding it hard not to give in to the pain.

I'm struggling...

But I won't give in! I will keep fighting! I'll keep trusting! I'll keep waiting!

 

The difference support makes!

After church today, I was thinking back 15 years to when I was waiting for another diagnosis. My situation was different in many ways then. We were still childless & I was off work on disability. We also were NOT plugged into a local church. And this was before twitter & Facebook. I had my Hubby & our families, but that was the extent of my support.

Today, waiting for diagnosis is still hard, but I am surrounded with love & support from many sources.

1. I have the most incredible husband! He loves me so much. He's so patient with me when I fall apart. He has picked up so much of the responsibilities here at home when he is home. He sees the tears & hears the fears I'm afraid to voice with anyone else. He is my rock!

2. I have awesome parents & in-laws who are helping with the kids & with whatever we need help with.

3. I have a great church family. I didn't have this 15 yrs ago. I'm overwhelmed by the offers of help. I've had offers for meals, childcare & housework. Now to figure out what help I need & when. I also know we are being covered with their prayers.

4. I have a ton of friends online supporting me. Childhood friends, college friends, family, church family & Internet friends. When I'm struggling, I can make a quick post. Then I'm covered in prayers & receive tons of encouragement.

This 2nd time of new symptoms & diagnosis waiting is still difficult, but the additional support I have is making an incredible difference. I'm having moments of fears & tears, but nothing like the crushing fear & depression I had from fighting this fight with very little support. Don't get me wrong, my Hubby & our families were awesome support back then, but there was only so much they could do.

I think twitter & Facebook have helped too. Being able to post how I'm doing is helping me be open, honest with others. It's hard to admit face to face that you are scared & struggling. But posting online is a little easier for me to share. And I know someone will reply with just the thing I need to hear.

If you are going through something similar, I suggest surrounding yourself with a strong support system! The bigger support team, the better off you will be.

To all of my friends & family, thank you! Thank you! Thank you! Thank you for offering to help us! Thank you for your prayers! Thank you for your words of support & encouragement! Thank you for being there! Also thank you to those of you who are supporting my Hubby & the kids. I know health issues affect more than just me, so thank you. I'm so greatful for all of you! Your love and support makes all the difference in the world!!!

Getting through the hard times

Life with a chronic illness is hard. It's even harder when you are waiting for a diagnosis. There's just some relief when you finally find out what it is you are facing and you have a name for all the symptoms you are dealing with. Physically it's no better, but mentally it's infinitely better.

So what do you do when you are waiting for that diagnosis or you are having a bad flare? Do you have a plan in place? Here's some ideas that have helped me:

1. Pray! Tell God you are scared. Tell God you are hurting. Ask Him for strength to face what you have to face. God doesn't cause the pain & bad things you are facing. But He does allow it. Everything you are walking through, He knows about! Everything you go through has a purpose, we just may not know that purpose. Sometimes, it's to refine us, to make us into the person God wants us to be. Sometimes, it's to bring us to God. Sometimes, it's to bring others to God. Other times, it is to gives us some experience so that we can encourage someone else in life. And sometimes, we may never know the reason. Ask God to help you see through your pain to others you might help.

2. Find someone to talk to! You don't have to tell everyone all you are going through, but it helps to have someone to talk to. Keeping everything inside you is not good.

3. Let others help you & pray for you! Telling others you are struggling is very humbling but it can be uplifting too. Having someone bring you a meal or watch your kids for a little while or mow your lawn, can brighten your day & uplift your soul.

4. Find something to fill the time! Read a book, do a hobby, watch a movie. Do something. Don't just sit around a think constantly about how bad you feel or about all the things that might be wrong. Even listening to uplifting music helps.

5. Let some things go. Don't feel you have to do all your housework or even keep doing all the activities or volunteering you've been doing. You need to face the fact that you have limitations. It's ok to not sweep when you feel bad or say no when asked to do something. You can't do everything.

6. Have a plan for those really bad days! Have a simple meal plan, have backup babysitters, have some down day activities planned. It's not a sign of weakness to rest! It's ok to have a down day.

7. Don't give up! That diagnosis will come. This flare up will end! You will adjust! It will get better.

8. Share what you are going through with others. Start a blog. Start a podcast. Watch for others in pain & share with them. You never know when your experience might be the encouragement someone else needs to keep fighting.