Savella Update

So, tomorrow I will be 4 weeks on Savella. I'm totally up in the air about it. Stomach issues are the biggest down side to it. It's not been a magic cure all. I'm still achy. I seem to not have as much fatigue. I feel like I'm just waiting, with breath held, to see if it works. I thought I was losing weight, but now I'm not so sure. Still having the weird face numbness. Still struggling with emotions.

Guess I need to just wait & see...

Will the upset stomach ease? Will the weight start moving off? Will my pain levels ease up? Will fatigue continue to ease up?

In the meantime, I soldier on...

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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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