Martha’s Story

Site created on June 2, 2018

I am wife to Russell and mom to Quinton 11, Jackson 9, Shiloh 6, and Branson 2. This site is to keep family and friends updated on my cervical neck surgery in Germany. Also I was just treated for Lyme Disease last week so I might also have some updates in the future here about that. 


For those interested in the background story on the Lyme (and need for surgery) here it is.... As a child, I was often sick. I had many fevers, headaches, and was often cold and tired. Over the course of my 35 years of life, I have spent much much money on chiropractors trying to alleviate my headaches and back pain. Not long after we got married, Russ asked me (in a kind way :)) "Are you always sick like this?" I guess I thought it was normal to hardly ever feel good. Yes, I got a headache most every day and yes I had some stomach problems... But doesn't everyone?!?! Also I have never had much energy and have often felt I am an extremely lazy and un-self disciplined person. And time will tell how true that is or not. :)


In the summer of 2016, I woke up one morning feeling like normal and suddenly I felt like throwing up  and I did! I threw up most all day and was sick for several days after. I kept feeling extremely wore out but thought maybe I had some flu bug even no one else around me was sick. But then 10 days later it happened again. And... 10 days after that... it happened again. During this time I noticed a very large red circular rash on my back. I was aware it could be Lyme Disease and eventually went to our local doctor. I knew if it was Lyme, I needed at least a couple months worth in antibiotics and was certain my little local doctor wouldn't know that. And even then, I knew many people still didn't get rid of their Lyme with just antibiotics. Luckily my dr did have some knowledge on Lyme and said she thought that's what I had. She knew it was pointless to test me for it because rarely do blood tests pick up Lyme Disease. She gave me a shot of antibiotics along with 10 days of oral. I took them and seemed to feel better for awhile.  It was at least 4 months before that rash faded away.


Within just a few months, I started having a lot of strange symptoms including a lot of increased back pain, and leg/hip pain. The back/neck pain got so bad it was tingling down my arm. I began to dread the nights because they were so painful and plus I had started profusely sweating at night. Deep down I wondered if it was Lyme but wasn't sure what to do about it.  I started having a lot of pain under my right arm also and after awhile realized I had a lump in my armpit. Of course I feared cancer. But decided to watch it for awhile and see what happened. I hoped it was just a swollen lymph node. I began to also experience quite a bit of nausea and dizziness.  Also I had really bad pain in an area that I thought was a rib out of place.



Finally in Jan of 17 I went to my OB doctor to have the lump checked out. But nothing showed up on tests. Then in Feb I went to another doctor. He ordered various tests along with blood work and found I tested positive for Rocky Mountain Spotted Fever but by what the test showed, thought it was something I'd gotten as a child.  He ordered another sonogram but again no results. If the lump wasn't a swollen lymph node, what was it???


Symptoms continued. In March I went to a natural doctor in Kansas City that 3 different friends recommended I go to when they heard I had Rocky Mountain Spotted Fever.  Over the past year I have been to him 4 times. What I thought was rib pain, he said was liver pain from the damage Rocky Mountain Spotted Fever had done to it. He have me a lot of supplements and many of symptoms lessened and some went away. But the painful swelling on my right side never left much. And I continued to fight pain and nausea.



In the fall of 17, I joined a Lyme support group that was "advertised" in the Hearth and Home magazine. I learned of a doctor in Wisconsin that specializes in treating Lyme and many people had gotten help from him. So finally with much encouraging from friends and family, I booked appointments. But he was very booked out so my appointments weren’t until May.


In Jan of 18 the lump under my arm really flared up. It's never left but sometimes not as painful. So I decided maybe I should get a biopsy.  My doctor sent me to a surgeon. He walked into the room and said "Well, what you have is a couple extremely swollen lymph nodes" I looked at him in awe and said "How do know that?" And he said "Your records show that." To say the least I was VERY disgruntled! Not sure how that important piece of information was never told to me but yes, it had showed up on one of my sonograms I'd had done. He said "Oh yes, they are very large! And if they're this large under your arm, I'm guessing you've got other enlarged ones but just can't feel them." And so of course I asked "So WHY are they enlarged?" His reply was "That's the good news. We have an answer. Your blood work shows you have Rocky Mountain Spotted Fever and the swollen lymph nodes are an immune response. " Hmmmmm ok... so my my other doctor said I'd had it since I was child but whatever. (I didn't say that to him :)) And my  next question is "What do we do to get rid of the swelling?" He prescribed an anti-inflammatory medicine that's also a pain med and said it should help in a month. Well it did nothing.. truly nothing!! And I was wishing it'd help my back pain but nope!


Anyway, symptoms have come and gone and returned again etc. Sometimes minor, sometimes major! About 2 months ago I started having excruciating pain again in my neck. The pain has never left there but it comes and goes in severity like the rest of my symptoms. But this time, it was the worst it'd ever been. It caused me tears just to comb Shiloh's hair for school in morning. My left arm was really hurting and tingling and sometimes feeling a little numb. I was having sleepless nights due to pain. My muscles were in knots. I went the chiropractor several times and a massage therapist but nothing helped. So back to local dr who prescribed muscle relaxants, strong pain med and steroids. I asked for an MRI so she ordered that too. I wanted to have the MRI done in Denver (4 hours away) cuz it was so much cheaper but didn't want to make 2 trips so waited to get it done for about a week when we had plans to go to a conference there. In the meantime, the pain meds, steroids, and muscle relaxants did very little to help at all!


I was very miserable at the conference and even started having some swelling and numbness in my face instead of just my arm. I  has some other strange symptoms so quick the muscle relaxant and steroids since they weren't doing any good anyway. I kept on with pain meds just in case they were doing something cuz I felt kinda desperate.



Several days later my doctor said the results of my MRI showed a pinched nerve and I needed to see a spine specialist. So  a week later got an appointment with the specialist. He said "Physical therapy, nerve pain meds, and shots in your back will not help you! You need surgery. And you need surgery soon!" I left with a heavy heart and found myself a little shade tree to shed some tears under. But soon was trying to convince myself that surely I didn't need surgery and maybe this would go away after awhile on its on.

But my family quickly convinced that I must not ignore this and I needed to look into surgery! Well, I knew one thing for sure... I did NOT want to go to Germany!! No way! That would be way too hard to leave my children. And I just didn't want to go!! And it was just too stressful to add that into my life. But for some reason I found myself researching why people went to Germany to get back surgery instead of getting it done in the US. And then... soon I found myself sending off all my info to Ken Heibert, the liaison man, for surgeries in Germany.


I got that off to him shortly before we left for Wisconsin so figured I'd hear from him while we were there. Well, last Friday the 25th, as we were walking out of the Lyme doctors office from my last appointment, a message came through from him (I'd had my phone off while in the doctor's office). The message said... "When can I call you? Surgeon says you need to be an operating table son. It's serious!" It was just too much for me! Russ had to call him back. I couldn't hold my tears back.


Ken told him that in all his 6 years of being a liaison man, he had never seen a ruptured disc as bad as mine. Surgery got scheduled for June 6. And... I felt a little frantic. We're weren't even home and yet needed to be ready to leave for Germany in 8 days!!! We got home Sunday eve and... needless to say... the week has been one of the most hectic of my lives!!


To be  continued...  (By the way... I hate posting something without editing it.. but I don't have time today so hope you can make sense out of it all... I know there's mistakes)

Newest Update

Journal entry by Martha Koehn

Ok so I just wanted to post a quick little update. To save time, I will copy and paste a "little" from my Christmas letter. I used to write one every year but this is the first in the last 3 years so it is very long detailed letter. 😏  If anyone wants to read the whole thing... let me know and I'll send it to you. marthakoehn83@gmail.com

..........

By the time we got home from that Wisconsin trip, I was very sick again. I began to fear that what if I'd never feel well again. My low back was again hurting extremely bad. I found it odd. I again wondered, was it from the travel or the Lyme treatment? I became very nauseated again. My legs ached more than ever. I was so so so tired. I had headaches. Finally about a month later, I started feeling better again. And my goodness... I soon started feeling so good that I was ready to tackle some organizing that I had wanted to do 2 years earlier. It was incredible!! I worked harder for the next 2 weeks than I had in the last 2 years!!! I went through a lot of totes. Filled more totes. Made piles for the thrift store and bags for the trash. I do believe that I probably lifted way to much stuff. I tried to be careful but when it was just Branson and I at home, I couldn't expect much from a 3 year old so I just did stuff myself. When I was getting close to done with the project, I could feel my good health slipping away. I really had to push myself to finish and then I crashed.

 

I had been really looking forward to our area school meeting here this year (about a month ago) as last year I was terribly sick. The meeting was in western Kansas last year and I decided to go because I'd be sick at home just as much as there. Well, I wound up sitting in a chair in the nursery and finally went to someone's home to lay on their couch. But hey... it was different walls to look at than mine. But on the way home in our old school bus that we board and teachers traveled in, I was really wishing I hadn't come along. It wasn't my first bad experience with the bus as the children's field trips were awful. I hated it that my children saw me on the couch or in bed so much. And I hated to so often reply to their wants and requests “I'm just too sick!” I felt I was being a terrible mother. So the least I could do was go on their field trips. They were baaaad but I pretended to be well the best I could. One trip, I knew before I ever boarded the bus, it was gonna be awful, not only was I nauseated, but I was starting the day with a bad migraine. I sat on every chair or bench (and sometimes the grass) I could find along the way on our tours. And sadly I returned home with the same migraine. Another trip, there was long stretches with only fields and prairies in sight... no restrooms... and that was a scary feeling as I just never knew when my digestive system would decide it was time to rebel!! When we got to our destination, all the students and parents went on a hike, while I laid across some bus seats and fell asleep. On another trip, all parents and students hopped on a carousel. I debated but to be honest I thought “If whatever is wrong with me, eventually takes my life, I'd like for my child to be able to say 'even though my mom was sick, she still did her best to do things with us and even rode on a carousel on my field trip'” So... on I hopped!! I smiled big and waved at my young boy even though inwardly I was cringing and hoping I didn't throw up.

 

Anyway, sadly the school meeting here was pretty much a test of endurance. But, we have one more year on the school board so I'll hold out hope that I can enjoy our last one. I enjoy being on the school board and have tried my best to still do my part. The hardest for me has been that I haven’t been able to have the teachers over. I would love to but getting my house cleaned up enough to be able to have company is very difficult.

 

So.... where am I now?

 

As far as remaining symptoms.... yes, my legs do still ache some, the swelling and pain under my arm hasn't changed much yet which does concern me even though I understand it's an immune response to the Lyme. If it's still there in March I'll see what Dr Ben says but I fear what he might say is I really need to try the strict, anti-inflammatory diet for 3 months. Also my neck does still hurt some but nothing compared to what it used it. I recently got x-rays done and sent them to my German doctor to make sure everything is ok. Haven't gotten the results yet. And my low back does give me some trouble but I've always had that. And I've certainly had quite a few headaches but again that's life. I'm often tired but not nearly as bad as I used to be. I used to not be able to wake up long enough to hear the entire question my child was asking me.

 

I often feel that I am climbing out of a thick fog. It's sometimes shocking, some of the events and details that I don't even remember from these last couple years. It's incredible that I am cooking, cleaning, and doing laundry. There are even a few days I haven't taken a nap!! And I have experienced waking a couple times and not feeling tired. Recently I laid back down after Russ left for work and after a few minutes I was like “HUH, I'm not sleeping?!?” I can go to the grocery store and actually concentrate. I can go to town and not have to take a nap before heading home. I've even made snack for my children sometimes after school whereas in the last couple years, I was generally sitting or laying when my children came home and they had to find their own snack. I have experienced numerous consecutive weeks with NO nausea! I sometimes have entire days where my legs don't feel like I've run a marathon nor my feet like I'm walking on pins and needles. I have even experienced what it feels like to have some energy. I painted our bathroom recently. Over Thanksgiving break I played in the snow with my children. I have many times felt like doing cartwheels (haha... IF I knew how!) because I feel such joy and happiness inside!!

 

I now have a new theme song. It's called “Thank You Lord” also by Don Moen. But this song I sing with a strong voice. Yes, my children know this one too. I sometimes even pick Branson up and twirl around with him while I sing it!!! So far, this Christmas season, I am staying above “survival mode” like I have been in the last couple years... I've actually enjoyed being with friends and family. I have been able to take part in conversation and not just be groaning inwardly and thinking “I just want to go home!” One evening after a get together, I found myself heartily visiting and suddenly I thought “WOW! I don't have that feeling of 'I just want to crumple onto the floor or at least rest my weary head on the table or counter in front of me'!!” Often the kitchen is where I've forced myself to stand and pretend I'm fine. But just last night after a supper at school, I realized that while cleaning up in the kitchen, I was tired but wasn't having to tell myself over and over “Just keep going!” It is awesome what I am able to do this December and also enjoy it!!!

 

I'm maybe not quite feeling as good yet as I did about a month ago or back at the end of August. But its probably just due to Holiday busyness. I'm excited for January because I'm pretty sure that things are going to slow down and my body and brain will be able to rest a little more and heal even faster with out so many down times. When I feel good I think “Ok now... just stay positive and determined and you won't need to have down times!” But when it hits, it's real. It's not a matter of choice. I can try to fight it all I want but it doesn't help. I try to tell myself to just get with it. I fear to be ok with and accept not feeling good because then what if I stay there and don't get well again? But so far I do always start feeling better again in about 3-4 days. And when I don't feel good, it's still generally not even close to as bad as I used to feel! So I try to just accept that life is full of ups and downs and its not my fault or choice when I don't feel good. And I need to just have patience and not “chomp at the bit” to feel better. And honestly I know that no one feels good all the time... gotta wait for Heaven to get that! :)

 

I actually feel so much better than I used to that I'd be satisfied even if I didn't improve anymore. The idea though that I will most likely feel even better yet as time continues is sometimes mind boggling. Dr Ben says it's common to have a lot of ups and downs for the first year as the body fights off and gets rid of all the infections plus heal from all the damage done to the body. And the longer a person has had Lyme, the longer it will take for their body to heal. I still have a hard time believing that I actually had something “wrong” with me (Lyme) most of life and that maybe I'm not as lazy as I've always believed myself to be. But maybe at the end of next year I will tell you that yes... life is better than it's EVER been before!! :) Of course I have fears like... what if I go back to how I felt, maybe this is just a faze?!? But I try to just live one day at a time. Truthfully I know that I naturally have a laid back nature so I don't really expect to ever have boundless energy. And I'm pretty sure I will always struggle with keeping up with laundry and cleaning my house etc.

 

But for now.... I'm here to tell you.... Life is amazing!! And we have amazing friends and family!! We've been helped in so many ways, beef and pork in our freezer, meals brought in, money given to us, house cleaning, prayers, etc... but the bottom line is the love and support we have felt and received! We feel very undeserving!! Also... we serve an awesome God!!! Truly He cares for us!!! We have felt very very blessed this last year!!!

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