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Sarah’s Story

My name is Sarah and I'm 28 years old. I have a lot of chronic health problems. Some of the conditions I battle are: peripheral neuropathy (axonal sensory-predominant PN), POTS (postural orthostatic tachycardia syndrome), degenerative disc disease (back and neck), spondylolisthesis, disc desiccation, polycystic ovarian syndrome (PCOS) with insulin resistance, hyperacusis, misophonia, kidney disease, TMD (temporomandibular disorder), migraines, allergies, dyshidrotic eczema, chronic (daily) headaches, lactose intolerance, acid reflux, and others.  I have two spinal cord stimulators implanted to help with my pain. The combination of medications and the stimulators help, and I am thankful for the relief. I still deal with a lot of pain and spend way more time in bed than I would like to. I'm holding on and hoping and praying for a cure for all of this one day (hopefully sooner rather than later).

Latest Journal Update

Mish mash

Hello all you faithful followers. :)

Sorry it has taken me so long to update. It's really a combination of two things-- 1. Not much is going on, so I don't have anything interesting to talk about. 2. I have been really having a hard time physically for the last few months.

Pain

I had a pain flare (the neuropathy) that was several weeks long--it may have even been close to 2 months. I don't remember when it started, but it was rough. The pain was excruciating and would not let up no matter what I did. It has finally settled down for the most part. Still having rough patches, but overall the pain has lessened--thank God! On top of all of that, I accidentally stepped on a plastic cat toy (on July 28th) with little notches that are raised. It's hard to explain, but they are called Cat Crazies toys. Stepping on even a grain of cat litter feels like a knife going through my foot, so imagine what this darn plastic thing did to me. I don't remember why, but I didn't have my slippers on yet. I think I had just taken a shower and hadn't gotten them on yet. I just remember that I could hardly breathe and I took the step or two toward my bed and collapsed in tears. I didn't realize it at that moment, but I ended up twisting or spraining my ankle in response to stepping on it--my body automatically tried to compensate by making sure my weight wasn't on the cat toy. So I dealt with a very sore ankle and a sore, swollen and then bruised area on my foot. It is finally just about back to normal. 

And as if that all isn't enough to deal with, my headaches have been really bad lately AND I've had an increase in migraines. I went a week with a migraine every single day. I had one last night, but they seem to be letting up a little bit so I hope and pray that the every day migraines are gone. It's hard enough to deal with them on occasion (especially with all the other medical stuff I have going on). I know that the heat doesn't help. Just being exposed to a high temperature (which, due to my heat intolerance, is anything above 72 degrees or so) can bring on a migraine. I am not quite ready for winter, but I AM ready for the cooler days of fall. They aren't too far away at this point.

Dairy = bad!

For quite some time, I was dealing with nausea on a daily basis. I tried to figure it out by process of elimination, and I just couldn't find out what the issue was. I was just going to chalk it up to pain, since pain does make me nauseous quite often... but then I figured it out! Dairy. It was making me feel so sick. I've had issues with cheese since surgery 5 years ago, and I have talked about it a lot and tried to figure out why cheese was the issue. I'm not that big on other dairy products, so I didn't make the connection. I was trying to replace some snacks with things like yogurt and string cheese and also had finally (after years of the store not selling any that I liked) gotten a chocolate milk that I enjoyed drinking (as a treat). I started to suspect that I was having issues with dairy.. so I bought some Lactaid, which is a pill that basically is the enzyme needed to digest dairy products. I didn't realize it, but it is common for people to become lactose intolerant or lactose sensitive as they get older. I suspect that when the chemistry changed within my stomach, I started having issues with dairy--but I didn't eat/drink enough to really notice. Well, now I know. I take 1-2 Lactaid pills before I eat or drink any dairy products and for the most part, things are back to normal. I can tell if I've had too much in a day, even with the Lactaid, because I still will get nauseous... but for the most part, I'm doing well with it. I limit my dairy and always take the Lactaid first and that seems to keep things under control. Now I just need to never go anywhere without my Lactaid--one more thing that I can't leave home without.

Good news

I want to share that I got some really good news today. That's all that I want to say publicly about it, but I wanted to share a happy moment with everyone. I've been stressing out a bit lately about some things, and I finally got good news today. It's funny how things happen on certain days...

Regret

I say that (it's funny how things happen on certain days) because today is exactly 5 years since I had my surgery that ended up leading to all of these neurological conditions. I've written about it all in detail before, so I don't intend to rehash it all. I do have to say that it is incredibly, incredibly frustrating to have gone through something so difficult only to end up with severe pain, chronic illness, and have every good thing that the surgery did be reversed in the end anyway. What was the point? I wish I knew. It is very hard for me to not let the regret of that decision cloud over the rest of my life. If only... If only I had known. If only the doctor had told me. If only it hadn't happened to me. If only it was caught sooner. If only... I know that life can't be lived that way... I don't want to live a life of regret and continually looking at the past in frustration. It's very hard not to, though. My life would be VERY different today--if only. I wonder a lot if I would change things if I could go back 5 years. My first response is "of course"... I would have never had surgery. It is more likely (than it is right now at this point in my life) that I would be teaching full time and maybe be starting a family. I'd probably be independent and out on my own. I would most likely be healthier than I am today and wouldn't be confined to this bed and house so much. I want all of those things. I want the freedom, independence, and health.

Yet even with all of that, I know that God has my life and everything in His hands--and He knows why things happen the way they do. I may not fully understand, but I believe that there is a reason that I've been through (and am going through) all of this. I know that God has used me to help others in similar situations. I don't know what my greater life purpose is at this point (because I always thought it would be having my own classroom and having a family with lots of little ones), but God knows. And as hard as it is to sit and wait in the unknown... I trust. I don't know if I will be pain free on this earth, but I trust that my pain will be used to help others. I don't know if I will ever have my "dream job", but I trust that God will plant me right where I am needed most. I don't know if I will ever have the freedom to wake up, hop in the shower, and be out of the house any time I want and within 30 minutes, but I trust that there's a reason. A reason for everything... even the hard things...

7 years old!

It is hard to believe, but our two oldest cats (Gavin and Bailey) will celebrate their 7th birthday on Friday! I've already given them their gift--a water fountain to drink out of. They love it. They had gotten into the habit of wanting to drink out of the sink or tub in the bathroom. We thought it was cute, but it was a bad habit to start... it got to the point where they would dash in front of us if they heard the bathroom door (not safe-can't count the number of times we almost fell or stepped on them) and would sit by the door and meow, wanting in when nobody was in there. We had tried a water fountain before--one that we got from PetSmart--but it just made a huge mess. It ended up with water all over the floor and the cats didn't seem to really like it that much anyway. This time, I got them the Catit Design Senses Fountain from Amazon and they are sooo happy with it. :) They rarely even follow us into the bathroom anymore--and when they do, it's usually just for attention. They don't jump up into the sink and tub looking for water. SUCCESS! I took some pictures of the cats trying it out, so I'll have to post those to Facebook one of these days. I love love love my baby boys. Happy birthday, Bailey and Gavin! I love you both so much! And I love Kado, too! :)

Surgery date

I know it's been a few months since I wrote last, so I imagine I haven't written this yet... my next dental surgery has been set up for September 9th at 11 am. I can't believe it's only about a month away. Yikes. Time sure does go fast in some ways, yet slow in others...


I think that's about all I have for updates. Like I said, it's been pretty boring around here. Haven't left the house much at all this summer (maybe 5 times?) because I have been in so much pain. I'm hoping that is about to change. :) As always, I would love any good thoughts and prayers... and I would love it if you'd leave a guestbook note and let me know how you are doing. I feel so out of the loop right now! I hope everyone is able to enjoy the rest of the summer--stay cool! :)
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Comments

4 Comments

Joni Mueller
By Joni Mueller
You are an inspiration in how you trust God even in the darkest times, Sarah. Hang in there, you are loved. And Happy birthday to the boys. Can't believe it's been 7 years! I hope today is a good day for all at the Nelson house.
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Connie Young
By Connie Young
Was thinking about you this week so am glad to read your update. I'm sorry about all your pain and migraines. But it was a blessing to hear that you had good news, that you found out what was causing your nausea, and that you were able to get something fun for your cats. Would love to see them playing in the water fountain! :-) Praying that your pain and migraines continue to ease up and that your dental surgery will go well. Thank you for being an example of trusting God even when things are hard. (((HUGS)))

"Therefore will the LORD wait, that he may be gracious unto you, and therefore will he be exalted, that he may have mercy upon you: for the LORD is a God of judgment: blessed are all they that wait for him." (Isaiah 30:18)
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Betty Nelson
By Mom
Oh, Sarah, you never, ever fail to inspire me! All you go through on a daily basis and you still have such a strong faith that God has a plan for you. You always trust that He will take care of you. I love you so much! You have made me look at life, in general, in a completely different way, more than once. :) <3

I love that the Lactaid is pretty much working for you. It's nice to see you be able to enjoy some dairy without getting so darned sick! Yep, one more thing to add to your list! Sheesh!

Our babies are getting older and they are getting SO spoiled! They sure to have it good here. But, we are pretty lucky to have them too, huh?

Continue to carry on your strong faith in God honey, I've always said that that's what gets you through all the hard times. You are such a strong young woman, but always remember that you can lean on me too. <3

I love you!
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Annie Derrell
By Annie Derrell
I'm glad the pain flare up has eased. I hope you stay at lower pain levels until your surgery. The last thing you need to have to worry about going into surgery is a flare... *gentle hugs* Saying prayers for you right now.

I wonder if lactose intolerance has anything to do with my GI problems...? I know I'm lactose intolerant... I cannot drink straight milk. But in the past processed milk, like cheese and ice cream, never bothered me. I can drink milk with sugar in it too (because that acts much like Lactaid, helping the digestion process), so chocolate milk is no problem for me. But maybe as I'm aging it's getting worse and I just haven't paid attention to it...? Once my new insurance kicks in, I'm getting a whole new set of doctors, so it's something to consider talking to a GI about.

Congratulations on the good news! I'm so happy for you!! *hugs*

Oh sweetie... Try not to linger on the regret. Remember, "My life can be summed up in one sentence: it didn't go as planned, and that's okay." I hate that you are suffering and that you have suffered so much. But think of all the good you have done as an advocate for people with invisible and chronic illnesses. Think of how much more aware you are now...how much more empathic and strong... You are a real life super hero, lady. You are amazing. Not saying that you wouldn't have been as a healthy person... Just saying that the fact you have done so much while being so ill...? That speaks volumes. YOU ARE AMAZING. And I love and respect you very much.

...and still...I wish God would cure you already... It really does break my heart to see such a good person always suffering. It isn't fair or right. *hugs*

Happy birthday to Gavin and Bailey! :) My Rufus and Baby are 18 now... Rufus isn't doing very well... In fact, I think the only reason he keeps going is for me and I feel a lot of guilt about that. *downcast head* I love him so much and I don't want to lose him. He's my baby... But he's so old and frail now and I know he's in a lot of pain... It just hurts... But I try to give thanks for every day I have him. I love him very much. I love Baby too, but it's not the same. That makes me a bad fur mommy, I know... :(

Saying prayers for your next surgery! I really hope it goes smoothly and you have a swift recovery.

Love you, sweetie. It was great to read an entry from you. Take good care.
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