24 Hours with Lyme and Dystonia

A 24 hour log of day in my life with Dystonia and Lyme Disease.

I know people don't always want to hear what is going on for me halth wise. The truth is I don't always want to talk about it either. I get sick of hearig myself talk about it and tired of telling the same stories over and over. It's treing. Even so I feel that it's important for me to share unedited what goes on with my body and in my mind. If I don't tell it exactly like it is how can I ever expect people to understand or believe me.

And I do feel like some people don't believe me. I think some people think I'm exaggerating, that maybe I'm lazy, unmotivated, or trying to use my husband for some reason, or that I simply just don't want to go to work. These things are upsetting. Why on Earth would I choose to go from being super fit , active, outdoorsy, adventerous, outgoing, and having my first teaching job to faking an illness for years, sitting around the house alone doing almost nothing compared to before. It blows my mind when I get the feeling that people think it's not really that big of deal. Believe me I did not want to be this way. I would trade it in for a full time job, a social life, and the ability to ride my bike again, and have babies any day.

Part of the reason I think that people get this perspective is because I don't share everything that goes on in my body or mind with everyone. I have made what I think is an accurate assumption that people don't want to hear it all. So I wait for moments when people seem truely interested to give full disclosuer.

Another reason I think people don't "get it" is because people usually only see me when I'm having a good or at least better day. Every day , every week, is different for me. I often don't know how I'm going to feel from one day to the next and I stay home unless I'm felling pretty good for me. Or I visit with people who understand and don't expect me to feel and look good.

So if you only see me on days when I don't look sick, that's because I don't go out when I don't feel well. I sometimes don't have it in me to be social, or even get in the car to go somewhere. Other times I don't go when I'm feeling funky because it's ovbious when I don't feel good and I don't want to divert the fun getting together energy to talking about me being sick, again. I try to think of how my presence will effect the group and sometimes I just don't go so everyoe else can have more fun without the sick girl.

Anyway, this has been on my mind a lot lately as I'm feeling a bit misunderstood. I can see how and why that happens, but I also wish it didn't happen with so many people. So...I decided to write a log of what a random day is like for me. I've included as much as I could about what happens with my body and my mind. Maybe this will help people to "see" me.

Part of what can't be seen is the neurological issues I'm having. I deceide to leave this unedited so you can see how my brain is causing me to ytpe. I just can't seem to get my fingers to dowhat I want them to.

This is a 24 hour log of May 11, 2011

9:00am

• woke up in pain, used bathroom knowing that once I got up I wasn't going to be able to go back to sleep
• took meds
• tried to start dishes, but only got as far as soaking some in a dishpan of water before I needed to sit down
  
• checked email for messgaes from Dr. and to see if anyone signed up for helping me - nothing and sad about it - I had to cancel a dr apt because I can't get myself there and don't have a large enough community of supprt to be able to find a ride everytime I need one
  
• sat in office chair in pain and frustrated that the computer is slow and not working right
• Dr. called to reschedule apt that I canceled today because I couldn't find a ride, but I didn't answer the phone because I'm too tired to talk and I don't know when to reschedule because I don't have a way to get there
  
• mated the socks in the sock basket that have been sitting around for a week+ then had to rest
• sat on floor to sort laundry because standing and bending caused too much pain in my back
  
• had to pull myself up off the floor using the dresser, act of lifting basket of laundry exhausting
• while putting laundry into washer my head started shaking and moving uncontrollably
  

10:15

• hungry and ready for breakfast, but still recovering from the laundry, lay down on couch for a bit feeling overwhelmed and lonely, wondering why some people still don't believe that this is really happening to me
• even though I'm resting I feel like the insides of my body are shaking and moving and then my hea d doe sstart moving
• knees burning and feel swollen
• feeling naseaus so force eat breakfast of banana and GF toaster waffels baceuse I'm ttoo tired to make anything else remember 3 times that I need to take pills before I am able to remember long enough to go get them
• talk on phone with Dr about paperwork I need from him
  
• muscles across chest and shouldershurt and are tight from twitching
• put on more clothes because I'm having a hard time staying warm- wearing gloves in the house

11:00

• spent 20 minutes on the computer checking facebook and such before my brain got too tired to focus
• walked into living room and noticed I was short of breath and my heart was pounding checked my heart rrate apx. 100BPM no wonder I'm tired!

11:30

• went back to bed and read book for about 15 minutes then fell asleep in the pajamas I wore last night + socks, slippers, a robe and gloves and was just warm enough
  

1:30

• woken by sound of mail being delivered
• groggy, light headed, wobbly walking, and lower back pain in my spine
• replied to emails - forgot password and clicked wrong buttons several times
  

2:00

• made phone calls to Dr. offices
  

2:25

• made a sandwich for lunch - it took me 15 minutes to make a turey sandwich
• Jaw popping and face hurting from contorting in to weird shapes
  
• feeling light headed and slow
  

2:40

• finally got in the shower dor the day
• was standing in shower for at least 5 minutes before I realized I hadn't washed anything
• opened new bar of soap and smell was upsetting so I didn't use it

3:00

• shower made me so tired and worn out I went straigt to the couch and laid down in a towel for at least 40 miuntes with my eyes closed
• tried to hold a cup of water, but it was too heavy
  

4:00

• got up to get dressed and didn't have the strength to stand up had to get dressed laying down
• open window made me cold and I started twitching again
• mini melt down - worried that this twitching might never stop, feeling lonely, and like a burden on my community, especially my husband - wondering how long he's going to be able to handle this situation
  

4:45

• got up to pee and get snack, having hard time standing up straight, walking, and talking (I can think, but the words just don't want to come out)
  
• took about 5 minutes to get a snack from the kitchen
• contacted possible new Dr. who is local
  

5:00

• updated lotsa helping hands website with new dr apts.
• saton couch reclining and eating snacks
• finally put clothes into dryer
• made paking list for my stay over at my in-laws ( I need to get out of our house long enough to see if i feel better when I'm not in a moldy house and give my husband a break from taking care of me, he's tired) Had to make list or I will for sure foget something
  

6:00

• random paper work and computer stuff

7:00

• Make dinner - frozen trkey burgers and fresh veggies, had to sit sown and have my husband finish the last part
• Having a hard time getting words to come out my mouth and hsaking a lot

7:45

• Start packing the million things I'll need for staying away from home for a few days, it takes almost an hour with help to do this - leaving thie house is not something I can don on a whim, I ave to thinkabout food, water, meds, and my clothing everyth time I leave
  

8:40

• While trying to walk across the street, I'm simply to fatigued and my knees too weak so I just sit down in the road and wait till I get some stregth back and try again, but have a really ahrd tome with it and sit down again until my husbadn can hlep me get across the street - I feel ike an old lady
  

9:30

• At my in-laws wondeful home and really tired from unpacking the car and setteling in
• having a snack and then get ready for bed, but will probably read until my hands hurt too much

10:30

• ended up checking email, blogger, etsy, and facebook and seeing comments which lead me to watch James Durbin videos on you tube

11:30pm

• finally got ready for bed and did read for about 15 minutes until my arm hurt from holding the book

8:00am

• woke up with my arms, shoulders, and chest in pain
• tried desperatly for an hour to get comfortable and go back to sleep, but i couldn't get all my limbs supported properly to be comfortable enough

9:00

• finally just decided to get out of bed
• take meds
• sit on front porch in sunshine talking with father-in law, twitching and watching tiny yellow finches fly around
• will likely take a nap as I don't feel like I'm completly done sleeping

Even though yesterday was both hard physically and emotionally, I'm doing alright. I try to find humore and joy in what I'm doing and make the best of the situation. I'll be resting out at the ranch house for a few days sitting in the sun, watching the garden grow and playing with the kitties. Oh yeah and they have cable!

As always I welcome your questions and comments. Hope you are well.

She was shakin'!

I've developed a new symptom: twitching and shaking. It's called Dystonia. This blog post is the full story of what happened. Warning, this is a long blog post, but I really wanted to share this experience with all of you.

On April 19th I was tagging along with two of my girlfriends who had appointments with their Dr. in Los Altos. I was riding in the back of the car and I wasn't feeling so well. I went inside to sit in the waiting room with them and people kept asking me if I was feeling alright. I finally realized that I wasn't. Their Dr. looked at me with concerned eyes and offered me a place to lay down and some oxygen which I gladly accepted. When I got up to walk I was weak and a bit wobbly. After a few minutes on the oxygen I started twitching. Really it was more like full body writhing and convulsing.

My friends were concerned and they got their Dr to take a look at me. I knew something wasn't right. In fact I knew something was really wrong and I've only felt that way once before. I knew I wasn't okay. He let me lay there for about 30 minutes and I wasn't getting any better. My friends called my Dr. and let him know what was happening. Meanwhile their Dr did a basic exam, gave me an adjustment of one of my ribs that was hurting, and sent me to go see my Dr. in Redwood city. Every time I sat up the writhing got worse. I didn't have full control over my speech, my heart was pounding, I was hot and cold, and I felt like I was going to pass out.

My friend pulled the car up to the front of the building, but I couldn't stand to walk. I could barely keep my eyes open. Their Dr. had to pick me up and carry me out to the car. My wonderful friend zoomed up the freeway to my Dr. in Redwood City. He came out to the car where I was twitching and shaking. I tried to walk with one of them on each side of me, but my legs wouldn't support me. So, my Dr picked me up and carried me until someone else met us with a chair.

My Dr. ( Dr. G) hooked me up to an IV of sodium chloride and let me rest in a reclining chair for a long time. I started realizing that the more I stayed flat on my back the better I felt and that when I sat or stood up I'd start shaking again and my speech would get weak. After a while the shaking calmed down, but I was still really weak and tired so he switched me to a dextrose IV to try to perk me up. After almost 4 hours of IV I started feeling a little better then when I arrived and I knew my friends needed to get out of there so we headed back home.

I sat reclined in the car on the way home and was able to be still for a while. Then when we arrived home I walked from the car to the house and I started twitching again. I was so fatigued that I just laid on the floor for a bit to rest.

The next day my husband took me to the urgent care. Let me tell you if you ever want to be seen immediately and get 6 nurses in your room at once just tell them you're convulsing or having something that looks like seizures and they'll rush to help you. It was all a bit overwhelming. I got another IV, some med to try to stop the shaking, basic lab work, and a CT of my brain. Once they determined that I wasn't dying, they sent me home saying it should pass. WHAT!?

After waking up again to awful shaking and barely being able to get around our tiny house my husband decided to take me to the ER at Dominican. I saw several nurses, a Dr, and a neurologist. He did a basic exam and even though I could barely walk and was convulsing, he said I had a "normal neurological exam" that he'd "seen this before" and that "it should pass on it's own." WTF! I wanted to punch him in the face. This is not normal by any means! They didn't even try to figure out what was happening to me. One day I'm feeling great and the next I can barely walk or talk and that's considered normal?

Meanwhile, my wonderful Dr. was calling and checking in with us and brainstorming ideas about what to do now. We started calling for info. on getting seen at Stanford, UCSF, and with any other Lyme literate professional we could think of. Finally the DR. who's office this started in called us to check in and suggested I see a DR. A, a Lyme literate neurologist/chiropractor in SF.

We made an apt with him and I'm so glad we did. After a very through 3.5 hour evaluation we discovered that my brain isn't working correctly. I couldn't smell out of one side of my nose, my muscles are weak, some are barely even working, I can't feel movement in all of my toes and fingers, etc. He said that I have a condition called Dystonia. It means that the part of my brain that controls movement isn't telling my body to stop moving so I'm moving involuntarily. The right side of my brain is especially effected which is causing the left side to be weak and malfunction, and the two sides of my brain aren't communicating well.

This condition can be caused by a number of things. In my case we're thinking that something caused a hole in the blood brain barrier and things are getting into my brain and causing it to misfire. I'm told that it could leave as quickly as it came on or it could stay for a long while. There is no "cure" for it, but there is a lot that can be done to protect the body, support it, and encourage the right parts to start working properly again.

In addition to all of this he showed me on my X-rays where my spine has pulled to the right, my neck doesn't curve, a disc is wearing, and I have spina bifida. WHO KNEW!?! I didn't. But it turns out one of my vertebra isn't fused together properly.

In essence I'm a hot mess right now. I'm trying to stay positive and do as much as I can. I visit with friends, sit outside and have even gone out for dinner. Some days are good and some are super funky. Some days I can do a lot and some I can't. What I have figure out is that I need to rest a lot, talking (esp on the phone) makes it worse as do too much stimulation, loud noises, or lots of moving around.

I've been having to ask for help a lot lately. Help with errands, driving, shopping, cleaning, etc. I just can't do what I was able to do just a few weeks ago. Lots of people have offered their help and many have been super helpful and supportive. Thank you!!

To make things easier for me I've created a website via Lotsa Helping Hands. I can enter in requests for help and those who want to can sign up to help out when it works for them. If you're interested in being on my support team please check out my website and sign up to be part of my team Keri's Helping Hands. <-- Just click those words to visit my site.

Thanks to everyone who has stepped up to make sure I'm okay, especially my husband who has really risen to this new challenge. I couldn't do this without all of you. Thanks so much!

I'm really tired now. I think I'll go lay down.

Visiting with the Naturopath - Part 2

More on my experiences with naturopaths and biofeedback.

Since my first visit with the naturopath in nor-cal I have recommended her to several friends. When you know there's something not right happening with your body and your regular doctors can't or won't figure it out or you need a lot of answers at an affordable price, biofeedback is a handy tool. One of my good friends had many familiar symptoms, her husband had been ill off and on for years and they'd both seen tons of drs. They had biofeedback and found out that they also had Lyme Disease, co-infections, parasites, food sensitivities and the assortment of fun goodies that come with being world travelers and having Lyme. They're both on a path towards recovery.

More recently I went with a friend to visit this naturopath. My friend had mysterious digestive issues, fatigue, memory loss and a few other symptoms. It turned out that she has parasites from a sandy beach in Costa-Rica along with "total adrenal melt down", and a bunch of major food allergies. She was given a list of foods to avoid that was longer then mine, and was advised to do some further lab work and take many supplements to help kill the parasites and support digestion and adrenals. She had dramatic improvements in the first week of changing her diet and taking the herbs and such. It's so nice to see your friends start to feel better.

After that visit we both went home and told out husbands about it. They both agreed to see her and I made an apt for myself as well. The three of us went and got a bunch more valuable information. Her husband found out that he keeps getting pneumonia because some of the bacteria is hanging out in his gut. My husband found out that he has Lyme and co-infections. DANG IT! Dang it. DANG IT!!!!

I however, got really good news!!! My levels of infection for Lyme and friends are very low, lower then they've ever been. She said that what ever I'm doing is working and to keep up the good work because I'm almost there. Hooray!!!!!!!!! I so needed some good news. It was nice to know that the infection was getting better. But I was curious as to why I'm still so tired and worn down. She said that detoxing takes a lot of energy, my immune system hasn't rebounded yet, and I'm still dealing with adrenal fatigue, and parasites. Okay, so I've still got some work to do, but it isn't all Lyme and that's great!

I was really bummed about my husband though. I'm bummed that he has it, that I probably gave it to him, that he has to go through the hell of treatment, and that we have to delay trying to have a baby until we're both free of Lyme. Not that I want to have a baby with the way I'm feeling and how weak I still am, but the thought that it could be happening some day soonish was really nice. He's going to start rotating through some of the leftover herbs and anti-microbials that I have left over. I'm hoping that his immune system is much stronger then mine and that he'll stay mostly symptom free and will get better really quickly once he starts attacking it.

So, if you want details on who this wonderful naturopath is, just contact me. I'd be happy to share. I really believe that she can help people with a wide variety of health issues. Remember the first time I saw her I was simply complaining about feeling a little tired and some pain.