Sunday, April 29, 2012

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!!!

Sunday, April 22, 2012

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.

Friday, April 20, 2012

Good News

Got a call from the rheumatologist! It's awesome news. I do NOT have lupus!!!!

I just feel lighter knowing that. I still have a spinal tap on Monday & a nerve conduction test on May 4th. But it's a relief to know 1 disease I don't have.

On a side note, we are at a homeschool convention right now. I'm exhausted but feel I'm doing a fairly good job of pacing myself. I'm taking breaks & even came back to the hotel room today & took a short nap. So I'm doing ok. I'll still probably be exhausted tomorrow night though...

Thursday, April 12, 2012

Still no diagnosis!

Well, my appointments have come & gone. I'm fighting a headache. I'm not sure if it's weather, stress or hormone related, maybe all 3. Time to rest, but first I want to update y'all on what's new.

I saw the neurologist on Tuesday. Based on my symptoms, it's looking like I have a couple of different things going on possibly. So, I have to have a Spinal Tap on 4/23 & I'm also having a nerve conduction test on 5/4.

Then I saw a rheumatologist today. He did confirm that I have Raynaud's Phenomenon (feet/hands turn blue when cold). He is running a whole slew of lab tests & also referred me to a dermatologist for rash on my face.

The good news from the week is that I love my team of doctors! They are committed to finding out what all is going on with me & are wanting to know what my other doctors are doing.

The bad news is I still don't know for sure what is going on. And the things they are testing for/suspecting are pretty scary. I'm being tested for Neuropathy in hands/feet, MS(Multiple Sclerosis) & Lupus.

I know that whether it is 1 or all of these, God will carry me through. I've seen God's Faithfulness time & time again as I dealt with a heart arrhythmia & fibromyalgia. I know He won't fail me now!

I am also blessed with a wonderful Hubby who will be by my side no matter what we have to face. I'm blessed with 3 great kids who love me & are great helpers. I have awesome parents & in-laws who love me & help me when needed.

I am also blessed with tons of family, church family & friends who will pray for me, encourage me & help out where needed.

So although the future looks scary, I know I'm gonna be alright!

Monday, April 9, 2012

Night before neurologist appt.

As I lay here in bed, it's the night before my neurology appointment. I'm struggling with a bad reaction to the sun. I seem to have hives & feeling a little blah. But that is nothing compared to the inner turmoil I'm struggling with.

I'm very anxious to hear what the neurologist thinks. I'm a little scared though. I've had bad experiences in the past with doctors. Because one doctor told me I was crazy & my fibromyalgia symptoms were all in my head, I fear I will hear that again. I know deep down there is something wrong & I know the MRI showed it, but I still fear the "it's all in your head" diagnosis.

I'm also praying I don't completely fall apart on the doctor. Some of my symptoms are a little scary. I'm praying for clarity of mind as I talk to the doctor. I want to be able to remember all the symptoms & not downplay them. I have a tendency to do that as I'm pretty good at hiding what's going on with me.

Hubby is working out of town so I'm going to be on my own. Fortunately my wonderful parents are coming up to help me around the house & with the kids. They will be here for me, but it's not quite the same as having Hubby here. I also have Rheumatologist appt. on Thursday, so it's a busy week healthwise.

I'm also a little stressed because at the same time as I'm getting all this health news, I have two kids with birthdays this week. My son is turning 9 tomorrow & my oldest daughter is turning 12 on Sunday! So trying to stay positive & celebrate them during this time is rough. And, I might not be able to make their birthday cake like I usually do. So frustrating!

Anyway, that's what's on my mind tonight. I'll post again soon when I get a diagnosis...

Tuesday, April 3, 2012

Honest talk about pain & struggles!

I'm struggling. I'm struggling a lot. I'm not supposed to. And I'm definitely not supposed to talk about struggling... WHAT????!!

Ever feel like that? Ever feel like that since you are a Christian, you are to live this perfect life where every thing is rosy & you have no problems? For some crazy reason, we Christians think that just because we accept Christ as our Savior, suddenly everything in life is perfect. And if it's not, we feel like we've failed God & everyone around us.

Life isn't perfect. Jesus even told us we would have troubles. John 16:33 says "I have told you these things, so that in Me you may have peace. In this world you WILL have trouble. But take heart! I have overcome the world."

Jesus said we will have trouble. He didn't say come to me & all trouble will disappear. He said come to me so I can give you peace when you have trouble.

Why do we have troubles, pains, imperfections, etc? I truly believe a lot of it is because we live in a world ravaged by sin. Sin destroyed God's perfect creation. This world is flawed. Because of this, we will have storms, natural disasters, imperfect people, sickness & strife. But sometimes we have troubles because God wants to bring us to our knees & have us confess sin in our lives. It could also be that God has allowed Satan to sift us so that God will be glorified. We may never know the why? behind our suffering/struggling.

But we can know the God of the universe, the Creator, the Savior of the world who gives peace! The peace God gives is beyond explanation! In John 14:27, Jesus says " Peace I leave with you; My peace I give to you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid."

This peace is not the absence of troubles or suffering. This peace is a calmness of soul, spirit & mind. It's a gentle inward assurance that even though things look bad, real bad, God is still in control and He will carry me through this.

How do I know this is true? Because I've experienced it first hand, time and time again. My story is not unique. It is one many people around the world experience. Mine is one of a body wracked with physical pain. It may not be your story for each story is unique. But whatever your story, Jesus is Here! He's waiting to give you Peace!

I've had pain since I was a child. I can't remember a time when I didn't hurt. But I've always known God was there to carry me through the pain. My pain has been given many names & progressed in severity over time - growing pains, cystic arthritis, fibromyalgia & now maybe something more severe & damaging. I go through a period of struggle each time it gets worse and I wait for a new diagnosis.

I wonder "why me?" I cry out in fear for strength. I question God. Yes, I said "I question God!" He's big enough to handle my questions. I don't blame God, but I do ask why me? Why now? Sometimes the only answer I get is "Trust ME!" and somehow it's enough.

As I look back, I can see how this life of physical pain has drawn me closer to Jesus! When doctors & loved ones can give you NO relief, Jesus is the One who can! It may only be Peace of mind & strength to endure the pain or it may be an easing of the pain. But His relief is always what I need!

I can honestly say I would not trade one bit of my life! Yes, it has been painful at times. But without the pain, I might have walked away from My Savior! Without those sleepless nights, I might not have had time to pray for others! Without my experiences with pain, I might not be able to encourage others in pain & assure them that God WILL carry them through. Without my pain, I would not KNOW that God is all I need!