Monday, December 7, 2009

LLMD appointment

My husband and I went to CT to see the LLMD. It was another follow up appt for my husband. He may finally be able to get the picc line IV medication that he desperately needs to attack the bacteria quicker. Hopefully our new insurance will approve. Sad when you have to be rich to get the treatment you really need. He is on differnt medication anyway, now he is eating dairy products and says he is feeling much better on these meds.

Lyme is one hell of a disease. YES IT IS A DISEASE that is hardly recognized and some say it is not real, that it does not exist. That shocks me. Ticks can carry so many bacteria that can slowly kill you or quickly kill you.
YES, IT CAN KILL YOU.

I wish that our recovery is much quicker than it has been. It is a long, painful recovery. Painful because of the Herxheimer reaction. Killing the spirochites produces a toxin in the body which usually makes the treatment feel like it not working, sometimes creating a more painful cycle that is much worse than you ever experienced. I must say that even though the pain is great, knowing those little bastard spirochites are dying off makes me happy.
Some day there will be a happy ending to all who have Lyme disease.

Tuesday, November 24, 2009

Shame on Me

Last night I slept so good, hardly any pain, which was making me toss and turn the for quite a few nights, and I really felt rested and ready to go. I went off on my errand to Pompret, CT about 60 minute ride. On the way home I was getting more and more tired. I had planned on doing some more errands but by the time I arrived home I was exhausted and just looking forward to a nap.
This is the disappointing part of LYME.
You feel good one moment and then completely different hours later.
I really shouldn't complain since my husband is sicker and he just keeps going regardless.
shame on me

Monday, November 23, 2009

In the Middle of a Stupid Streak

Oh Boy, I am seriously in the middle of a stupid streak. Its hard to remember things, hard to find the words that I need to use, hard to spell simple words. What is even harder is at work they know I have Lyme but they don't understand the symptoms that come and go. I made quite a few mistakes Sat at work and was really embarrased about it. I jokingly said to my boss, its the Lyme disease, and she said yeah, sure, in a nice way of course. She is very sweet but so many people don't see you as sick cuz on the outside you look fine (most of the time) well, anyway I do. If I was falling down of slurring words they would understand better.
I am hoping I am not going to eventually lose my job.
I feel bad for my husband as his journey in recovery has been so much harder. He faces the same reactions in the people he meets and he is working his ass off for our family regardless. Hey I try to buy a winning lottery ticket but that just never happens. Oh Well, we all must go on, doing the best we can and dealing with life.

Friday, November 20, 2009

Just Joined a great support Group Online

This morning while I was surfing online I found this great site http://www.mdjunction.com/ A wonderful place to connect with others when you need support for an illness.

After my husband was FINALLY diagnosed with CHRONIC LYME Disease in June 09, he and I just want to help others with it.
I feel that his blog can help so many who are experiencing the same thing.

My blog was first created for me to keep a bit of a journal and if it helps others thats fantastic.

For anyone that wants to talk, not a problem! We are both here for you, to help in anyway we can.
Take care everyone, there is a light at the end of the tunnel. A good light!

Monday, November 9, 2009

Physical with my Primary.

Saw my primary today. Had a physical. This is the first time she heard I had Lyme Disease. I didn't send her any info from my Lyme specialist mostly because it seems Dr's around here just dont' get it, still!
She was surprised and asked me about the meds I am on. While punching all this info into the computer, she asked me questions about symptoms. All and all not seeming too interested in what I had to say. You know, I was there for a physical and she only had 5 minutes to see me.
Boy, I am so spoiled from my Lyme specialist. After all he acutally sits and listens to what I have to say, really listens. I think its time to find a new primary. Am I alone in this? Will I find a primary that will take the time needed to talk to me?
Just venting a bit.

Sunday, October 18, 2009

Are You Not Feeling Well?

Not feeling well?
Dr's can't find what is wrong?

If you seem to have health problems that no one can pinpoint to a certain cause you should check out the list of symptoms for Lyme Disease. It is amazing how many symptoms there are and what Dr's many times actually diagnose instead of Lyme. Please check this list at:http://www.canlyme.com/patsymptoms.html

It doesn't hurt to get the Western Blot test for Lyme but definately have the Dr send it to the best lab in the country in California. Usually it is an out of pocket cost for this but it is very worth it!

Monday, October 12, 2009

ANOTHER DAY, DEJA VUE

Sometimes it feels as if I'm saying the same things over and over again, sounding like a broken record.

I have emerged from a month long cycle that was very difficult.
Dealing with waves of extreme fatigue, lower back pain making sleeping difficult, TMJ, and other aches and pains.
Within the last week I have felt much better again, with renewed energy, less back pain and no TMJ.
What I do notice is the pain that comes after doing some very normal chores.
For instance,I got up Sunday morning a bit tired since I was a vendor at a craft fair on Saturday. The task of loading up my car, unloading and setting up, standing all day, breaking down the displays and repacking the car was quite a lot.
After breakfast at about 9:30 I decided to unload the car from the previous day. After my husband and I unloaded the car, we cleaned out the barn which desperately needed it and filled up the dumpster. Then we decided to clean the gutters. Jeff placed the ladder with little help from me and I climbed up and down cleaning them out. The front of the house being two stories and the back 3 stories. Then I cleaned the house before company arrived, unloaded groceries from the car when Jeff returned, helped clean up while Jeff was cooking and then relaxed with our guests.
I had the energy to do all those things and wasn't complaining about anything but after sitting for awhile and then standing my body hurt. Not just my back which would normally be where I would have pain but my entire body. My feet hurt and I couldn't believe it. My hands, neck, and my lower back, it felt like I had been hit by a truck. AAAAHHHHH! HOW I HATE THAT.

I know I have talked about this before but living with constant lower back pain for so long then having the majority of it go away when I started treatment was a true gift of life. ENJOYMENT!!! I was able to NOT think about the pain (which was every minute of every day previously).
So feeling the constant pain again with my back is very disheartening.
I hate for that to come back, I don't want to feel 80 years old, I don't want all my muscles to ache. I HATE THE FEELING THAT EVERYTIME I DO SOMETHING STRENUOUS MY BODY REACTS IN SO MUCH PAIN AFTERWARDS!!!

I had to work today and I made several floral designs to go out and worked the entire day without many problems. Now my knees are the part of my body that hurts.

THIS IS LYME DISEASE. IT DOES WHAT IT WANTS EVEN WHEN WE ARE FIGHTING IT!
The best part is we can fight it, when the cycle ends and you feel better, you forget how sick you are. Knowing that someday soon this will all go away (as long as I am good about not getting bit again)

Tuesday, September 22, 2009

2 month update with Dr. Sabovic

I had my 2 month talk with the specialist, Dr. Sabovic, the other day.
We went over how I was feeling, what had improved, how much of an improvement it was and the symptoms that are still with me.

We also talked about the medication and how it was working for me. Sometime I still get stomach upset but nothing serious.

I discussed what had improved since I started the meds and that it was about a
60-70% improvement from what I felt like before. I still get that creepy crawly feeling in my shoulder, neck and upper back stiffness, weakness in my wrists and knees and tired but not exhausted. My memory has improved as well as my concentration and my spelling is improving (although I still have a day here and there that spelling can be difficult)

If these symptoms do not improve we will change the medication.

He also said that I tested positive for Babesia, which is another bacteria that the tick carries. It usually goes hand in hand with Lyme. The normal number is 14/15 and I tested 16. So it was just over the norm. He asked me if I had any night sweats or felt a chill right to my bones. I have had some night sweats but so infrequent that it is not a concern.

He also asked if I had air hunger. I had to repeat that one back to him, AIR HUNGER?
did you just say air hunger?
Yes he did, it is when you feel like you just can't get enough air and breath in deeply. Not like an asthma attack but just a need to get extra air.
I have had that on occassion also but not to the point where I thought it was an issue.

The medication I am on should be good for the Babesia and I will monitor my progress closely over the next few weeks. If there is no improvement in my energy (which is my biggest concern now) I will contact him.

I am also going to get lab work to make sure the med's are not harming my liver.

So things are getting better all the time and I have been very busy with my artwork for this Saturdays Fine Arts and Craft show in Lexington. Onward and upward we go, one day at a time.

Thursday, August 27, 2009

Surfing Anyone?

WE HAD GONE AWAY ON A SHORT VACATION, PLAYED IN THE SWELLS FROM HURRICANE BILL UP IN MAINE (ON THE BOOGIE BOARDS) NOT QUITE UP TO SURFING YET.
Jeff had a tough time after about 30 min. hard for him to walk, sometimes he tries too hard to do the things he used to do so easily. He will get there, it just takes time. We still continue to laugh about things.
I continue to improve. Soon I will have a conversation with our specialist about the next session of medications. I am curious as to what he will say. So many of the symptoms have come and gone. At this moment, what I am experiencing are, creepy crawly sensations in my right shoulder, achy and stiff neck/shoulders, some stiffness when I get up from a chair but for now this is good.
I actually stood for 3 hours during the Bruce Springsteen concert in Mansfield.
Although my ankles and knees were really sore it was worth it.
We both continue to try to help others. For now the news about Lyme disease continues NOT to be a story on the front page of Massachusetts newspapers but hopefully, very soon, the laws will be changing so Dr's will be able to aggressively treat Lyme, educate themselves (because most of them haven't due to the recent laws) and truly be able to prescribe the most effective treatment without getting in trouble. Amazing how this disease is so widespread, yet, so ignored as a problem. That is until someone of importance comes down with it!!
Till next time!
P.S. I have started to paint again, feels great, nice to have inspirations and feel good enough to use them. This time I chose a 12" x 12" canvas. Usually I have only felt good enough to paint ACEO'S.

Tuesday, August 18, 2009

Feeling Better Again Round 2

Thats what it feels like, rounds in a boxing match. One minute your up, the next your down, not in such a short time of course but you can get what I mean.

I am feeling so much better, More energy, no depression, minimal pain. I actually went kayaking for about 2 hours yesterday, up river and then down. Was awesome, haven't done that in quite sometime. Now if I could only feel up to rock climbing I would be there. Maybe next spring!!

So things are looking up again. I am able to type better, think better and even spell better today. Its just good to feel like you can tackle anything.

Thursday, August 13, 2009

Struggling with Setbacks (typical Lyme)

Sometimes you just feel like giving up. I know I can not, but some days when the symptoms come back you just feel like it.

Though not as severe most symptoms have returned and I continue with my daily swallowing of pills. Memory issues, saying what I want, misspelling words, minor pain, depression and tiredness have returned.
The depression I have stuggled with before but always have gotten through it.
I am normally a happy go lucky person, focusing on my artwork and creativity to get me through tough times. I am not quite sure the depression is related to Lyme but I will, as well as my husband, keep an eye on it.

When the symptoms do come back, which is expected because the treatment is killing them off, you feel like you will never feel good, pain free again. My husband as well as his sister are going through the same feelings, Jeff knows he can't give up, he coaches his sister, myself and others to keep going.

There is always something worse that can go wrong. I should be glad I am not dealing with cancer as so many of my loved ones are or have been.

At least I know that somewhere down the line that tiny shimmer of light will become more visable and within reach.
For those of you who feel the same, keep on going, talk it out, write it down, do whatever you can to keep the faith and smile alot.

Wednesday, August 5, 2009

The Return of Pain

It has been 4 weeks since I've been on my med's and the pain has come back. Although not as bad in the lower back, ankles and wrists, but in my knees, thighs, hips and buttock. I have hiked and swam even though the pain is there (like I always did when I didn't know I had Lyme). I know that it will subside again but it freaks me out a bit to think that these things are dying off inside my body. How gross!! I have been very tired again and yes you begin to think that the pain will return and never go away. I have to keep taking the med's even though I absolutely hate swallowing pills.
I cringe everytime I have to. I am waiting right now to take my morning ones.


I am so happy to see many people have read my husbands blog. He is truly helping others and that is very important to him. He has been having some of the pain return also but I made him come to the beach the other night thinking he would like to try a swim again. (He had been very nervous about getting back in the water and swimming) He loves to swim and the thought of not being able to or having pain and going under was terrifying. He did extremely well as I watched him go back and forth along the bouys.
Then he played catch with Trevor in the water.

I know that this is a journey that has many hills and valleys but I am happy to know that we continue to travel along it regardless of the deep valleys and the steep hills.

Friday, July 17, 2009

UPDATE

IT HAS BEEN ALMOST 10 DAYS SINCE I STARTED THE MEDICATION. I TRULY CAN'T BELIEVE THE DIFFERENCE. THE CHRONIC BACK PAIN THAT I EXPERIENCED FOR 4 YEARS IS GONE. TO BE PAIN FREE IS AMAZING. NO MORE ACHES IN MY OTHER JOINTS THAT LAST ALL DAY OR ALMOST EVERY DAY. I FEEL LIKE A NEW PERSON.

MY TMJ HAS DISAPPEARED.

THERE ARE DAYS WERE I FEEL TIRED BUT NOT THE KIND OF TIRED I USED TO GET.

SO THINGS ARE LOOKING GREAT!

Thursday, July 9, 2009

MY SYMPTOMS

Since a few years back I had steadily become more achy in the knees, wrists, ankles and lower back. I truly thought that it was age related. Maybe some of it is. My thighs would also ache. Until this past year I noticed other symptoms but as I said before that they were mild and sporadic. These are some of the most recent:

increased motion sickness

short term memory problems

stabbing pains that last only seconds in various places such as, ankles, thigh, side, head, wrist, hand

my eyes went blurry one day while talking to a customer at work, both were blurry and then the right eye vision started to shake

extreme fatigue on occasion, tired most of the time

hard to concentrate

heart skipping beats, or beating funny for a few seconds

a slight buzzing in one ear

weakness in the knees and wrists

droopy eyelid

nausea

and I have notice over the last year and a half that spelling easy words was very hard

The most recent symptom was ear pain when I was chewing, now it has moved to the jaw, TMJ

I have started on the medications and supplements (one night and two days now) and noticed a change the next day. I wasn't achy at all, felt wide awake a ready to go. Even my eyes felt wide open. I ended up with nausea and diarrhia for the first couple of days but it is settling down. The Dr. said usually the symptoms get worse before they get better so we shall see. I know that my husband felt good the next day when starting his meds and then got worse for a few weeks.

Today I don't have as much energy and it is difficult to type and spell correctly.

I have worked in my garden planting flowers and weeding today, took my son out and now I am home writing this but plan on relaxing on the couch for a bit.

Feeling like a new person yesterday was amazing and I can't wait to feel that way forever.

Wednesday, July 8, 2009

HOW I FOUND OUT I HAD LYME DISEASE

My husband has been recently diagnosed with chronic Lyme disease after many years of suffering, Dr visits, thinking he was crazy and having mutiple tests done. Lyme and others came up negative, not once but a few times. SEE HIS STORY AT http://www.jeffslymejournal.blogspot.com.

We found a specialist, a "LYME" specialtist and drove 2 1/2 hours to see him.

After my husbands hour and a half visit, tests etc.... he suggested that I get the Western Blot test also to see if I have Lyme because we were here at the specialist and WHY NOT? So I got the test also. Weeks later we received the news.

My husband tested positive for Lyme and I so did I!

Wow! We were happy,(as you could be for that matter), that finally the tests showed up positive and treatment was prescibed for my husband but I was shocked that I tested positive for active Lyme!

I had very mild symptoms and never in a million years thought that I had LYME! I just thought that I was getting older, achy joints were normal and just ignored the other mild symptoms because they were so few and far between.

NEITHER ONE OF US SHOWED THE CLASSIC BULLSEYE RASH THAT MANY PEOPLE GET!

So now treatment begins for me. My husband has been on the med's for a month now with very much improved results!!! I just started and it feels strange because I was never on many medications all at once. But I am glad that we caught it early. Lyme is a terrifying disease. So many people have so many different things happen to their bodies. "UNDER OUR SKIN" is a documentary on Lyme disease and it is very eye-opening and shocking to see but a must, I believe, for everyone!!