Frustrations & fears

Today is the day I start my new medication, Savella. I'm nervous about taking it even though I feel this is the right step for now. I'm nervous because I never know how my body will react. Lyrica didn't help & caused me to gain weight. Other meds have caused weight gain or mood swings. Some work for a few months then stop working. My doctor has high hopes for this med so I'm ready to try it. He even thinks it will help with all the weird symptoms I'm having.

Speaking of weird symptoms, I'm feeling so frustrated over them. When listing symptoms for my doctors, I get a long list of possible diagnosis. But when they run the tests (MRIs, blood work, etc) for those diagnosis, everything comes back normal! I mean, I'm glad the tests are normal as some of these diseases are nasty, horrible things. But it's so frustrating to have symptoms with no cause except "I guess it's just your fibromyalgia!"

My other frustration is my weight. For some reason, my body is determined to hold on to this weight. I've tried every eating plan imaginable (for 6 months or more each). I've eliminated carbonation & artificial sweeteners. I've done the low calorie thing, the Paleo thing, the whole foods thing, no gluten, no dairy, etc... It does NOT work. I still feel horrible & I still weigh more than I should. I try to walk but then end up down for 2-3 days in pain. It's so hard to be this way! I'm a doer. I like to help & do. But I can't! Ugh!!

I know God has a plan! I know God has a reason for me going through this. I sometimes wish I had a peek into God's plan. But I don't. I just have to trust in His plan. I just have to keep living life & seeking Him. I also need to keep my eyes on Him & not myself. When I do start getting fearful & frustrated, I know it's because I'm focusing on the wrong things!

I sat down to write this blog post because I was getting overwhelmed, sad & mad after reading Facebook. So many people are doing this plan or that plan for eating/exercise and having great results. I'm happy for them. I love seeing my friends get healthy. But I get sad for me. I get sad for my Hubby & kids then I get mad. But then I realize that God has us in this particular life! He knows the beginning & the end! He knows my frustrations. He knows our trials. He WILL use this for good! Who knows, maybe This is a training ground for my kids. Maybe one of the will be a doctor or a nurse or therapist... I do know they are learning compassion for those who have an invisible illness.

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Some questions

Living with a chronic health issues yourself or having children/spouse/parents who have a chronic health issue is by definition a life long ordeal. Some days you have good days & some days are pretty bad. Some days you feel like you have a handle on everything. You feel like "I got this! Life is good!" The next day you can be so overwhelmed that you wonder how you will survive the next few minutes.

These chronic health issues can include (but not limited to): fibromyalgia, hemophilia, severe food allergies, multiple sclerosis, sarcoidosis, chronic fatigue, celiac, rheumatoid arthritis & autism. The way these affect life varies greatly. I'm working on a project & would love as many people as I can get to answer a few questions listed below. You can get me the answers several ways. You can comment below, email me at joyfulmomlea @ iCloud.com or message me on Facebook if we are friends.

Thank you for your time & energy! Also, share this with others who deal with chronic health issues! Here goes:

1. Do you or a family member have chronic health issues?

2. If you feel comfortable doing so, could you share your issues?

3. What is your biggest challenge?

4. Do you have support or do you feel alone in your daily struggles?

5. Where do you find the most support?

6. Where do you find the least support?

7. What is one thing you wish you could tell others about life with chronic health issues?

8. What is the most helpful thing someone has said or done for you or your family?

9. What is the most unhelpful thing someone has said or done?

10. Do you have any other comments, suggestions, thoughts you'd like to share on these topics?

Thank you so much for your time & effort!

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Has it really been over 3 months?!

Wow! Time flies! So much has happened since April. I've started some new treatments that I'm excited about.

A couple friends introduced me to Essential Oils! I'm in love with Young Living's PanAway! Since I started using this, I have not had to take pain pills! It hasn't taken the pain completely away, but helps keep it manageable! I'm looking forward to trying some other oils once I get a little extra money.

I also got up the nerve to start chiropractic treatment. As I suspected, my spine was very misaligned! I've been 5 times & I'm a believer! After my 2nd visit, I walked out with NO pain in my neck. Now, I was really sore by bedtime & had to ice my neck. As my chiropractor, Dr. Kevin Storm, works on getting my spine in alignment, I am feeling better & better! He is also working on my tight neck & back muscles. Tight muscles have been a big complaint of mine. Between treatments & the exercises he has given me, I'm feeling more relaxed.

But, that is not all that's new! Dr. storm is also doing accupuncture on me! I've had 2 sessions so far. After the first one, I was a little sore & was very tired. After the second, I walked out pain-free (for about 12 hrs or so) & had lots of energy! I was able to weed my garden & still had energy to spare.

I now find myself looking forward to my treatment days. Each time I leave feeling a little better & the effects tend to last a little longer each time!

I know these new treatments will not cure my fibromyalgia. But I do feel certain they will make it more manageable & will give me more good days than bad! I am just praising God for opening my eyes to these alternative treatments! I was so resistant to them. They have been an answer to prayer! I'm excited to see the progress I make toward getting healthy! I now have hope that I can increase my activity level, which will lead to some weight loss!

So keep checking back for updates!

 

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Sometimes we overdo!

The balance between pushing ourselves & overdoing is a constant battle when you have fibromyalgia. You have to constantly be thinking "Is this the activity that will push me over the edge?" But sometimes, you have to choose to do an activity that you know will land you in bed. Why? Because you want to be with your family & make memories with your kids.

This past Thursday & Friday, I made that choice. We had the opportunity to visit Washington, DC. If you've ever been to DC, you know that it entails lots of walking!

On Thursday, marked in red, we walked several blocks from Metro to Ford's Theatre & Peterson House. We toured both sites & museums. Then we hopped Metro again to Arlington National Cemetery. We walked all over the cemetery (lots of hills). Then we walked from Cemetery across Memorial Bridge to Lincoln Memorial through several monuments & to Metro on National Mall. We figure we walked a good 5-6 miles.

On Friday we walked less outside, but more inside the National Archives & Smithsonian National Museum of American History, marked in blue. I was exhausted by this point & had to sit a lot! I missed out on seeing a lot of the exhibits with my Hubby & kids.

By Friday night, I was exhausted! It took several days to get back to normal. I try really hard to push myself to walk & keep moving. But sometimes I wonder if it would be better to have a wheelchair, at least for those times I know we are doing a lot of walking, like sightseeing & conferences. Where is that line? Where do you push through & where do you admit you need a wheelchair in order to keep active?

 

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Fighting

I'm not sure why this flare-up has been so hard on me. Maybe it's because I'm getting older. Maybe it's because I've gained even more weight. Maybe it's just because I've had 3 different doctors convinced it was 3 different diagnosis & lab work proved them wrong. Maybe it's the wasted time & money. Maybe it's the overwhelming fatigue. Maybe it's all the well-meaning "advice" on how to get better. Maybe it's hormones on top of everything.

No matter the reason, it has been hard. Part of me feels guilty because I am struggling so much. So many others have it so much worse. Losing loved ones, fighting cancer, losing limbs, fighting illnesses that destroy your body, being told "there's nothing more we can do", etc...

So today I'm fighting:

• The fatigue that threatens to drive me back to bed
• The guilt for struggling so much over this
• The uncertainty of when the next severe symptom will hit
• The fear of what the next new symptom will be
• The urge to give in & not fight
• The tears that seem so close to the surface all the time
• The frustration at having to watch my kids react to my health issues
• The depression that threatens to close in
• The isolation that calls me to retreat & avoid people/places
• The anger over having to deal with this that boils to the surface & threatens to erupt

Why do I not give in? Why do I fight? Because I have hope! I know there is more to life than this. This life of pain/suffering/brokenness is not forever! It is only for a brief moment!

Over 2,000 years ago, a little baby was born in a stable in Bethlehem. But He wasn't just a baby, He was God! He became man so that He could experience every trial, anxiety, fear & suffering that we face. He became man so that He could take MY sins on Himself and suffer and die for me as a sacrifice! As MY sacrifice! Then He rose from the dead! He defeated death!! Because He defeated death, I have life! I need not fear death! Because He is my Savior & Lord, I have eternal life! Once this life is over, I get to spend eternity praising & worshiping my God & Savior! Not only that, but in eternity there will be no more fighting! No more pain! No more anxiety! No more fear! No more anger! No more frustration! I will be whole!

Until then, I will fight the good fight!

12 Fight the good fight of faith, lay hold on eternal life, to which you were also called and have confessed the good confession in the presence of many witnesses. (I Timothy 4:12)

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Just fibromyalgia & carpal tunnel

I had my appointment with the neurologist yesterday. My tests came back good except for my right hand. It showed extreme carpal tunnel with weakness in my thumb. It's bad enough that I see the hand surgeon on Monday. I'm praying no surgery for now, but we will see.

For now, my neurologist feels all my other symptoms are related to my fibromyalgia. So, now I have to learn to deal with all these symptoms. I have a script to get a walker for my really bad days. I'm also getting a handicap placard for those days my fatigue is really bad.

Im struggling a lot. My symptoms are scary & annoying. But it's just more of the same thing I've had all my life. There's no cure. There's no real treatment. Different things work for different people. Lately I'm overwhelmed by everything. Do I go traditional meds? Acupuncture? Chiropractic? Herbal? All natural foods? Gluten free? Low fat, high fiber? Low carb? High protein? High fat? Lots of exercise? Little to no exercise? Stretching? Physical therapy? Massage? Do I push hard? Or do I rest? On top of all this, how do I take care of my family? How do I cook & clean? What if I continue getting worse? What if the weakness continues? What if the tremors get worse?

How do I balance working toward getting better with preparing for the worst? How do I research treatments without getting overwhelmed by it all? How do I explain to the kids the unpredictability of fibromyalgia? How do I explain that I might get better but I might get worse or I may go up & down?

At least I know that whatever the future holds, God is in control. None of this takes Him by surprise! I have to lean on Him to carry me through each & every obstacle! All this pain & scary symptoms makes me long for Heaven a little more! So I press on! I will walk through this step by step. I may never know the correct answers to all my above questions. I'm so thankful my Savior is my comforter & friend. I can vent my feelings to Him. No matter how scared & overwhelmed all this makes me, I'm thankful for it! Without it, I would not have as close a relationship with God. I would not be the person I am today. I still have tough days. I still cry. But I have hope! Hope that one day I will have no more pain! Thanks to Jesus dying for my sins & rising again! He is my living Savior & Lord! May He use my life to bring Him glory and help someone else through tough times!

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Another update

It's been awhile since I've posted. Since I've had no answers, I really didn't feel like posting. I had my MRIs several weeks ago & was supposed to see the neurologist last week. His office cancelled that appt & couldn't see me until Nov 4th. We called back & stressed that I needed to be seen before that, so I saw the nurse practitioner today.

The good news is that my MRIs are clear. So no MS! There is some arthritis in my cervical spine but according to them it is normal changes with age. They feel that the numbness/tingling is my fibromyalgia. She did listen to my concerns about the weakness/feeling off balance. I also stressed that I'd like to get back to walking, but fear I might fall.

After some testing in the office, she ordered an EMG with NCV. Confused yet? :-) An electromyogram (EMG) measures the electrical activity of muscles at rest and during contraction. Nerve conduction studies measure how well and how fast the nerves can send electrical signals. They will compare these to the studies I had done 1 1/2 years ago to see if my muscles are actually weaker or if it's a nerve signal issue.

After these tests, she said I'd probably be sent to physical therapy. She's worried about me falling and urged me to be extra careful until then. She also was concerned that my BP was high. I think it's just the stress over this, but have message in with my primary doctor. Oh & she also asked my primary doctor to up my Effexor. She felt it might help alleviate some of the nerve symptoms. I felt like it was a productive appointment. No real, definite answers but movement in the right direction.

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