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Sarah’s Story

My name is Sarah and I'm 29 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), chronic migraines, occipital neuralgia, allergies, dyshidrotic eczema, 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

30 Things: Fall 2015 Edition

30 Things About My Invisible Illnesses You May Not Know: Fall 2015 Edition

1. The illnesses I live with are:
     (These are the ones that affect me most--I have a whole bunch more on my 'complete' list)
     peripheral neuropathy (axonal sensory-predominant)
     POTS (postural orthostatic tachycardia syndrome)
     degenerative disc disease (back and neck) and spondylolisthesis
     hyperacusis and misophonia
     chronic migraines
     occipital neuralgia 

2. I was diagnosed with them in the year:
     peripheral neuropathy (axonal sensory-predominant): 2010
     POTS (postural orthostatic tachycardia syndrome): 2010
     degenerative disc disease (back and neck) and spondylolisthesis: 2004ish
     hyperacusis and misophonia: 2011
     chronic migraines: 2011ish
     eyeGraines: 2015
     occipital neuralgia: 2015 

3. But I've had symptoms since:
     peripheral neuropathy (axonal sensory-predominant): 2009
     POTS (postural orthostatic tachycardia syndrome): unknown
     degenerative disc disease (back and neck) and spondylolisthesis: childhood
     hyperacusis and misophonia: 2010?
     chronic migraines: 2010 or 2011
     eyeGraines: unknown
     occipital neuralgia: unknown

4. The biggest adjustment I’ve had to make is:
     I have always been very social. In college, it was not unusual for me to leave my apartment before 8 am and be busy all day until I return around 10 or 11 at night. Now I spend my days mostly in my bedroom in my bed. Most of my interaction is with my mom and my three cats. If I do leave the house, it is almost always to go to a doctor appointment. My once busy schedule that was filled with both productive things like school as well as extracurricular activities is now empty. Now I fill my days with spending time on the computer, reading books, watching TV, and providing peer support. 

5. Most people assume:
     That I am greatly exaggerating my health issues due to both the number of conditions that I have been diagnosed with as well as the severity and frequency of the pain and symptoms that I have. Oh, how I wish that they were right. 

6. The hardest part about mornings are:
     Some nights, I haven't even slept by the time morning rolls around. It can be hard to function 'normally' and get up at a normal time. Thankfully, I am able to make a lot of my appointments for afternoon time slots which allows me to take mornings to attempt to get some sleep. I take a medicine now that makes it so that I cannot lay down and take a nap during the day, so I can no longer go without sleep at night, go to an appointment, and come home and nap. 

7. My favorite medical TV show is:
     I don't think I watch any. I deal with enough medical stuff "in the real world". 

8. A gadget I couldn’t live without is:
     My phone. In the past, I've answered "my computer" and "my Kindle". I think I even said "my iPad" one year. Now I have a smartphone, and it has the same basic capabilities that any of those gadgets have. E-mail and Facebook are my main connection to the world outside of my house, so those are important. It is nice to be able to check my phone at any time--sitting in a waiting room or when I can't sleep at 3 am. I can also read all of my Kindle books on my phone and play games, so I have hours of entertainment. 

9. The hardest part about nights are:
     Laying in bed in horrible pain, exhausted! Just wanting to be sleeping and not being able to. Being too tired to read. Being awake when everyone else is sleeping. 

10. Each day I take __ pills & vitamins.
      Approximately 44 plus some sprays, creams, etc.

11. Regarding alternative treatments I:
      Have an open mind, but not an open wallet. ;) Unfortunately, insurance doesn't cover most alternative treatments. 

12. If I had to choose between an invisible illness or visible I would choose:
      Both have unique challenges, but I would choose a visible illness. 

13. Regarding working and career:
      My hope is that one day, I will have a career and will be working at least part time (but full time would be wonderful). I am not giving up on my dreams. With that being said, it is possible that I may end up doing something other than teaching if I get to that point health wise. I'm not sure if I would go back to my original plan or if I would go in a different direction. Time will tell. 

14. People would be surprised to know:
      That I spend a lot of my time trying to support and encourage other people. I spend quite a bit of time each day in Facebook groups for different chronic pain and illness conditions. I try to answer questions that other people have and encourage people when they are having tough times. I also volunteer as a peer support visitor locally. An easy way I try to encourage people is to send out cards, letters, e-mails, or Facebook messages to people just to let them know that I am thinking about them and that I hope that they are doing well. I know from personal experience how much a short note from someone can mean, so I try to give that to others.

15. The hardest thing to accept about my new reality has been:
       That there isn't a cure for any of this and there aren't even really any good treatment options out there. I can't tell you how many times I've heard things like "I can't help you" or "For now, you'll just have to live with the pain". But I don't want to! I want it to get better. I want a cure or a treatment that works so that things can go back to "normal". My whole life changed. Five and a half years ago, my world flipped upside down and it hasn't straightened out yet. Don't get me wrong, I have a good life. Aside from my health issues, I have been blessed in so many ways. Things just didn't go at all like I had planned, and chronic pain and illness leaves everything up in the air indefinitely. It's hard to plan for the future when you can't even plan out the week. When the day comes when I can better treat some of these things, I will be able to do some better long term planning.

16. Something I never thought I could do with my illness that I did was:
      Drive to Sioux Falls and back, go to a concert, give and receive peer support, and go more than a month without a migraine. 

17. The commercials about my illness:
      Do not exist.

18. Something I really miss doing since I was diagnosed is:
      Waking up in the morning and making plans for THAT day and then doing those things. Jumping in the shower, getting in the car, and going... I miss the freedom of not having to plan every little detail before walking out the door.

19. It was really hard to have to give up:
      The social life and friendships that I had from being involved with things. Being in school meant I had friends in my classes. Participating in college ministries meant that I had friends with similar interests. For the most part, I don't think it was intentional or malicious--but more of a natural fact of life that when I no longer had anything in common with these people and never saw them or interacted with them anymore, our friendships dissolved. It still hurts sometimes because it feels like a large number of my friends just up and walked away for no reason other than my change in health status--but when I look at it objectively (or as objectively as is possible), I see that it is hard to keep a friendship going when you don't see someone and no longer have much in common to talk about. It stinks, though, because I genuinely cared about those people and I would have loved to keep friendships going with them. It takes two, though. 

20. A new hobby I have taken up since my diagnosis is:
      I don't think I have taken up any new hobbies, especially since I filled this out last. I try to keep up with my old hobbies: reading, card making, coloring (click here to see some), and making photo books.

21. If I could have one day of feeling normal again I would:
      Hit "record" so I could relive the day over and over again! Boy, I don't know. I have all these grand ideas of things that I'd love to do like go to an amusement park, fly on a plane, etc. At the end of the day, though, I'm not sure it matters much what I do. I'd gather up my closest friends and family and spend the day with them. The memories of our time together would be wonderful no matter what we ended up doing. I can't imagine being fully able to engage--not focusing on breathing through the pain or keeping a smile on my face. Just feeling great without even trying--how amazing would that be???

22. My illness has taught me:
      Hard times will come and you will think that you can't get through them, but you will. You'll get through it and you'll get stronger and the next time it comes around, you will be that much more equipped to handle it. Every moment is precious, but especially the happy ones and the ones when you feel good--so cherish every one of them. Hold the ones you love close and be thankful for those who are there for you. Tell people often how much they mean to you. Take time to encourage people around you who may be struggling because the next day it could be you in that position. Most importantly --> hold on to faith in God and never give up hope.

23. Want to know a secret? One thing people say that gets under my skin is:
      "You look so good!" or "You seem like you are feeling much better these days!" It's not that a compliment is not appreciated. If you really want to tell me that I look good, I will graciously accept it. Most of the time, though, it is said in the context of a bigger conversation where the person is implying that I look good or seem happy/healthy so I should be "back to normal" or should be working or should be living on my own or should [insert other expectation here]. It's a type of backhanded compliment where they are saying that I look good and therefore something that I am doing is wrong. That kind of comment is not appreciated. BUT if you are truly just telling me that I am looking good or that I seem to be feeling well, I promise I won't bite your head off or get mad at you for it. :) 

24. But I love it when people:
      Take time out of their day to communicate with me. I don't care how--text, e-mail, Facebook, snail mail, face to face. I love knowing that I am worth someone's time like that. My days sometimes fly by, so I know that it can be tough to remain in touch with everyone that you would like to. On another note, something else that I love is when people take an interest in what I am going through. Learning about any of the conditions that I am dealing with shows me that a person cares. Spreading awareness is a huge way to show love and support.

25. My favorite motto, scripture, quote that gets me through tough times is:
      "Hope is more than a word; it's a state of being. It's a firm belief God will come through. Life brings rain... hope turns every drop into the power to bloom like never before." -Holley Gerth
      "Maybe it's not about finding the reason that all this is happening. Maybe it's just about trusting that there is one." -Author Unknown

26. When someone is diagnosed I’d like to tell them:
      This is not the end, but rather a new beginning. You WILL be okay. Life is going to change--maybe dramatically--but there will be good changes along with the bad or scary ones. Do lots of research and learn as much as you can. Talk to people who have been through it. You aren't alone. You may have friends and family who don't understand what you are going through, but hold tight to the ones who stick with you through it all. Never give up hope.

27. Something that has surprised me about living with an illness is:
      There are SO many people that I have met on Facebook who have neuropathy or POTS or hyperacusis or any other condition that I have who are within 10 years of my age (29). I can find so many people online who know what it is like to watch friends go to college, get married, have a family, start a career, etc. while they are unable to do those things. I can connect to them because at 29, I am in a much different place in my life than a 70 year old woman with neuropathy is. We can still connect on some level, but when people are close to my age, it (usually, not always) makes it so much easier to connect and relate to them. Yet when I look around in my "real life", I don't see that represented. I do have some friends from college who have some mild to moderate medical issues. As an example... I don't know anyone in my town and my age group who isn't able to work and is stuck at home in bed all day. I can easily find 10 or more people that fit that description online. It still surprises me how there seems to be an under-representation of 20-somethings (or 30-somethings) with chronic pain and illness (moderate to severe) locally. Where is everyone? Do they not exist? Is there not anyone around here who is that "unwell"? Is everyone healthy enough to hold down some form of a job? Or is everyone just hiding? Please, come out and 'play'. I'd love to have a support group of people close to my age in situations similar to mine. I'd love to meet more people who can relate to where I am in my life. If you are local to me and you fit this or know someone who does, I'd love to chat with you or them... we all need support, so let's support each other. <3 

28. The nicest thing someone did for me when I wasn’t feeling well was:
      I don't think that I can narrow it down to just one thing. I can tell you, though, that there is one person who has constantly done for me time and time again when I wasn't feeling well--even when she wasn't feeling well either. I have been blessed with an amazing mom who is constantly doing whatever she can to help me out. I know that I can always count on her when I need help. I live at home with her, so she obviously gives me a lot of physical help and support. She is also a huge emotional support--a sounding board, a counselor, a little bit of everything. :) She's pretty darn amazing and I am very lucky. <3 

29. I’m involved with Invisible Illness Week because:
      I believe that awareness is the first step toward eventually finding a cure for all of these invisible conditions that I battle on a daily basis. 

30. The fact that you read this list makes me feel:
      HAPPY! Didn't you read #24? :) Lots of love to you who read this. I love you!

9 people hearted this



Simon Jacobs
By Simon Jacobs — last edited
Hey Sarah, look into lyme, it fits ALL your symptoms. When was your last cold or flu? If the answer is "not for years" it's pretty much a cert! And if you do find it is lyme, the cheapest treatment by far, is a good salt and Vitamin C. Slow but works as well as anything else. You start off on a low dose and test yourself for a few weeks. Do you get a flulike illness without the snotty nose? That is a herx. Your body is being overwhelmed by toxins of dying bacteria. Back down on the dose and stay there for a couple of months. Join to learn more.
Connie Young
By Connie Young
Good to hear from you and thank you for sharing. ♥
Arlene Clements
By Arlene Clements
Long time no see good to hear from you!!
Chris Smith
By Chris Smith
I've been praying for you recently, Sarah, and I was so excited that you had a new post here. Your mom is so wonderful, and I pray God's blessing on her. Big hugs to you both. You're dearly loved.

Jill Merriam
By Jill Merriam
Hi Sarah!
Just wanted to say that you are my inspiration! I hope Joe grows up with a positive attitude and caring nature, even with his invisible illness! I'm really glad and proud you are helping others out and being a good support for others!
Know that you and Betty are on my nightly prayer list! 💕
See you soon! (But not too soon, alright? 😉)
Take care!
1 person hearted this
Joni Mueller
By Joni Mueller
I think you and Betty are both pretty amazing.
2 people hearted this