While going to a local networking group I found several deep tissue massage therapist so decided to try a treatment plan.  After a month I saw improvement in the use of my arm and less pain.  As the tissue, muscles, tendons, and fascia were loosening up my lymph was also moving.  I had a apricot size lymph node under my arm for over a year so it was exciting to see it fluctuate in size.

As summer got here the tops were not fitting although I was losing weight from my waist down.  I finally realized my chest had gotten bigger when I went for a bra fitting. I yelled in the fitting room because I was horrified and the sales lady got a good laugh.  The lymph was draining into my chest.

A friend suggested compression by wearing a sports bra over my bras.  That seem to clear my chest some and then the lymph was back in my arm. At this point I realized I need help and I looked to my networking group.  I found a LymphWorks massage therapist.

After 4 thirty minute treatments I had dropped considerable amount of water weight all over my body. Lymph massage is a gentle tapping and massaging in the areas of lymph and it is amazing how much toxins it moves out of the body.  She gave me exercises I could do at home to keep my lymph flowing like body brushing.  I had been told this before so now I had to fit it into the already strict routine of keeping my body running everyday.  By the 5th treatment my chest had gotten smaller and my arm was improving.

I find with this virus that any time you heal alternatively it may stimulate the original symptoms like the rash, dizziness, motion and noise sensitivity.  After about 5-7 days it all calms down and I feel increasingly better.  I definitely recommend trying lymph drainage therapy.

January 09

nasty head cold that lasted 21/2 weeks.  This made my WNV symptoms worse, like dizzy, nausea, motion problems and great fatigue.

TX: I was back to taking 15 min to 2 hour naps a day.  As the cold went away I had that numb drunk feeling for 2 days. A lump in my right arm pit showed up and was there for 3 weeks.  The doctor checked it out and determined it was a lymph node.  After the visit that night there was inflammation in my shoulder, arm, and breast on the right side. It felt like it was draining and it was smaller.  I palpated it when I was feeling better and the inflammation came back.

February

A CBC, glu, liver, kidney, thyroide, lyme, and mom test were run. All came back normal except mild elevated WBC and Hb.   No swimming the next 2 weeks and leave the lymph node alone. See if it resolves.

Tx: Tried steroids for 3 days- prednisone 20 mg. felt like normal again. No pain, no dizzy, no numbness.

As the steroids wore off the WNV symptoms became increasingly worse with each day. Arm pain was severe and could not use my arm for a week.

NOTE: The CDC recognizes WNV as a serious chronic illness.

March

Rested for 2 weeks to go to a concert.  Had WNV hangover the next day- light sens, headache, dizzy, fatigue

Tx: Had EMG done on Right arm and was in pain of 20 on scale of 1-10. On steroids for 24hours 4-8mg of methylprednisolone- felt like WNV 10x worse. The Dr said stop taking them.

The rest of that week I had arm pain and took infla-profen (Herbal)

Tx: The next week my arm felt better as long as I did not reach up. I started 4herb tea twice a day for 1 week then once a day. Arm felt better.

I seemed tired the last 2 weeks in march. I needed 8 hours of sleep or more. It felt as if my body was fight off a cold or something.

After Dr Thakor appt (rheumatologist and arthritis) I was in pain and stayed on Herb-profen the next 4 days. He said stay off steroids with any chronic virus. He has seen many people like me. I had an x-ray of my shoulder and the structure was normal.

I did nothing for 2 weekends and worked 20 hours one week. I felt a little normal for 4 days plus I was on herbaprofen. Once off herbprofen my arm hurt and WNV symptoms came back.

I have not swam since Feb 1. I’m finally back up to strength training 3 days a week. Tai Chi 2 days a week. Walking the dog on the weekend. I got on the stationary bike a couple times for 4 min. It seemed to aggrevate my symptoms.

April

Started with arm pain since my attitude has been forge on. I’m using my arm too much. Headache, tired, dizzy. TX: I took Herbprofen.

The dizziness seems to be better. I still lose my balance easily and have headaches with dehydration or stress.

I had an MRI that showed bursitis in my Right shoulder.  The doctors dropped the case since it could all be explained. They said it was bursitis and to go on steroids. This seemed conflicting to me.  I told the Drs that was not a solution. They suggested PT- physical therapy. I wanted to think about it. I had spent so much money and gotten no where other then frustration for medicine. I feel it is due to WNV, since I did not injure it. 

TX: is rest, ice, and herbprofen. I found ice was very painful so I used heat.

My attitude declined from frustration with the western medical community.  I am looking to eastern medicine and biofeedback for relief from the pain.

May

After sitting on the thought for a few weeks of what to do next, I decided to contact the doctor about PT.  I would not take the steroid shots.  The PT clinic had a 15 minute free consult I took advantage of.  I had spent a lot of money with out answer and wanted to make sure this could help first.  Of course I was a complicated case with it being WNV.  The therapist seemed to have a plan and felt we could work on getting use of the muscles back.  It was going to cost $400 up front and then $30 copay per visit.  I took the plunge and gave it a try. 

TX:After the first treatment I was in pain for 3-5 days.  We decided to have appointments once a week so my body could recover. Initally she did some acupressure of the tendons and lymph node tapping.  The tapping was to try to get the lymph system flowing again. This all seemed to be working.  I felt better the day before going in and then was in pain for another 3-4 days.  This went on for a few weeks.  As my arm felt better I thought I could hammer post for the electric fence one weekend.  That set me back and my physical Therapist yelled at me.  Do not use your arm yet!

June

I started to have more range of motion of my arm.  We added in a ball resistance exercise.  Then another physical therapist suggested muscle activation.  It was something new that had been working well for sport injuries and one other WNV person.  If I had not seen it myself I would not have believed it.  The theory is the nervous system lost contact with the muscle to tell it what to do.  Then the other muscles compensate.  It has made my arm feel even better, We added a few exercises to start to strengthen up the shoulder muscles.  Very slow and limit the use of the arm.

In the process we had a family crisis and the stress sent my WNV into relapse.  I had fatigue, dizzy, headache, unbalanced, and the rash was from head to stomach.  Then a few days later I had the numb drunk feeling, where my body feels all tingly.

I worked on recovering for a weekend of Irish festival partying.  I had so much fun with a friend from ID and partying with the Young Dubliners.  I had a WNV hangover Sunday morning with a little arm pain from dancing.  Monday I was fatigued and unbalanced.  I noticed it was better because I have my 32oz electrolytes to drink that nite.  Dehydration seems to really affect WNV.

The next weekend I watch my niece for a day and then a BBQ the next day.  I had little rest inbetween and the week was taking a toll on my body.  My left side started to have pain and twitching.  My left foot was in sever pain.  As I made myself go to bed early I started to recover again.

July

It has just begun.  We have had Culex mosquitos a few weeks early already test WNV posative.  Golden, CO had the first human case for our season.  I went on a trip to Virginia for PRMRP and visited NYNY.  I was nervous how my body would do with the trip I had planned. I love traveling.  I was on planes, trains, and automobiles.  It all went very well. I had lots of rest time in between the busy time. I made sure I stayed on my regimine.  I was very optimistic about my health when I got back. I felt I was turning the road.  Then as I got back to stressful work, family and reality my health started to plummet.  My physical therapist said vacation was great for my arm and I should be on permanent vacation. Sounds good to me, right me a prescription! Near the end of the month an insect (yet to be ID) stung me and it sent my Right arm into anaphylactic like shock. I was in a lot of pain and swelling.  I went into PT for an adjustment and it helped a lot. She said it was a good thing I came in so all the work we did was not erased.

August

My arm is doing much better, still not back to normal.  I went on a trip to FL for a business meeting and my health relapsed.  I was out late, not eating right, lots of noise and activity.  The 3^rd night there I had fever chills and went to bed early.  I woke up a few times and read then went back to sleep.  The next day I felt better.  As the day went on my system was falling.  I took naps and listened to my I-pod to keep my system relaxed and drown out the activity.  Once I got home my health has still been hanging on and I really need a full day of rest. Now I am trying acupuncture.  I still have swelling and burning around my lymph node and something else needs to be done.  I think I’m at a stalemate with PT.  So we are going to do 2 acupuncture treatments and then retest the muscle activation of the arm.  I found 2 acupuncturists here that have treated a lot of WNV patients. They said WNV gets deep in our system, messes up our immune system and brings up other viruses.  With acupuncture they can rebalance my system.  They are not sure why it seems to affect some more then others.  I know on this journey it seems like I have done a lot of self growth and letting go of the past.  Maybe that is all this journey was about, although a bit painful! I have my first acupuncture appt today. I’ll let you know how it goes.  I’m a little nervous because the outcome could be worse then I am now.  It could also be better. We will see.

September

This month flew past me.

Tx: The first acupuncture treatment I felt exhausted and like mush the rest of the evening.  The points in my skin hurt where the needles were along with my joints.  Two days later I went for another treatment. The same thing happened.  He kept assuring me we had to get my system back in balance.  My liver and spleen pulses were thready because they were sick. Ok. I went 2 days later, then two treatments 4 days apart, then treatments 7 days apart.  The same initial joint pain, skin point pain, and fatigue were the night of treatment. The next morning I felt much better.  I did feel the fatigue was improving.  The same time I decided to REALLY take care of myself for a month.  I made sure I had protein meals every 2 hours, 32oz +electrolytes, my supplements, bed by 9:30p for rest, and really listen to my body.  I also made a batch of 4 herb tea to detox the liver and spleen. The month of sept was a roller coaster. I went to a networking group to get out and socialize again.  I was there for 1 hour and did not listen to my body which said get out fast.  The noise was way too much and my health fell down as the day went on.   I relapsed with fever and chills and just wanted to be done with it all.  I wanted to give up.  That lasted for a moment until I came to my senses and prayed for help.  I got back up and lived another day.  The same time I went to a business symposium and the Feisty Woman suggested writing 5 positive things down before bed each night for 1 month.

October

It started out optimistic.  Writing 5 positive things down each night made me realize the good in my days even with the pain in my shoulder.  I started stretching my acupuncture out 10 days.  That seemed to be fine. My body was recovering faster and feeling like I had more energy.  Then I went to a Get Motivated seminar and found another tip.  Try not complaining inside and outside for 7 days.  That was a more difficult task then I thought.  Tx: With acupuncture, being positive, no complaining, writing 5 positive things down each night, and following my lifestyle plan I began to feel good again.  The month was pretty good. My Right arm was still inflamed and weak. The painful head and neck rash was back again. I went to acupuncture Monday the 26^th and he decided to get aggressive with my arm by adding electricity.  That stimulated my whole system.  I felt my body falling as Monday went on, with fatigue and general malaise. Tuesday I was dizzy and headache.  Wednesday I felt much better. The arm was less inflamed. I had also finished my cycle, WNV is always worse that week and especially my right arm. I will have to see how November starts out after this last acupuncture treatment.  Maybe I will have to have acupuncture the day of my cycle. The joys of being a woman.

November

I spaced my acupuncture out to twice a month. That seemed to work well. For two days after acupuncture I still had off days with fatigue, light and noise senative, dizzy, and headache.  It just makes me think that the virus is still in my nervous system and stress spurs it on. After those two days I feel great. My right arm feels much better and the lymph node has gone from apricot size to apricot seed size. I still have strength problems with my right arm and it may be that way for a while.  I have been more active with walking 3 times a week, strength training 2 times a week, and stationary bike up to 61/2min now. The bonus is I have lost 10-15 lbs of the weight I gained being sick. So I feel really good.

TX: It is important for me to get rest of 8 hours sleep, drink my electrolytes, protein meals every 2 hours, vitamins, antioxidants, joint supplements and listen to my body.  This is the new lifestyle that is working to keep me in balanced. So far nothing new has come up.

December

I started out strong with my own project to lead at work. I worked 12 days on that project and the stress was too much for my body. It reminded me that I am still sick by closing off my airway the end of that first week in December. I was alone in a room at work gasping for air as the shock of losing my life can be so close. Life is fragile.  I remembered to use the relaxation tools I have learned the last year and go to my happy place.  This calmed my nervous system down to allow air to flow to my lungs again and I started gagging.  I got myself together to go to the bathroom, compose myself and look in the mirror that I was still standing there. Another reminder of how my body has changed sharing space with West Nile virus. I made sure I took it easy the rest of the month or made sure I had relax time.  I did attend a gingerbread house making party, The Young Dubliners concert, a Christmas open house, girls night out, and holiday cheer.  This is a lot for someone relaxing and friends said I was more spunky this season.  So as long as I listen to my body and not push the limits West Nile virus and get along just well.

I hope people can learn from this long blog.  To date I still stand by my regemine to keep me going.

The journey continues in 2010…