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Invitation to Send Light, Love, and Healing to My Sparkly Friend Jennifer Hughes

Posted By Loolwa Khazzoom On November 14, 2009 @ 6:19 pm In Mind-Body Medicine | 6 Comments

(Jennifer Hughes last year)

(Jenn before the lesions)

Energy healing for my friend Jennifer Hughes: Sunday November 15, 10:30 am – 10:35 am CA time. Read on for details:

My dear friend Jennifer Hughes is one of those people born with light. She is deeply intelligent, a thinker, an emotional and spiritual risk taker, a deeply loving and dedicated friend, one of those special people who emanate sparkly energy full of joy and wonder.

Oh yeah, and she’s this ass-kicking warrior woman who somehow manages to be positive and perky even in the face of hideous medical malpractice.

This woman is the poster child for patient empowerment. She is on top of it like nobody’s business. She advocates for herself fiercly. The thing is, she shouldn’t have to be doing as much work as she is forced to do, given that, you know, she’s really really sick.

(Jenn and friend)Imagine asking someone with a 104 degree fever to run a marathon. That’s essntially what Jenn has had to do every day, given the incompetence of her medical providers. Oh yeah, and lest you suggest she change doctors, keep in mind that she’s at the number one facility for treating her condition. This is scary stuff, people, because if doctors at the top of their game are fucking up big time, it’s potentially only downhill from there.

Jenn is exhausted. Depleted from battle. Not only that, but she is at this point literally fighting for her life.

That’s where you come in. I believe in the power of prayer and visualization and love. So I’m asking all of you to join me in channeling the following into Jenn’s system, for five concentrated minutes tomorrow — Sunday, November 15, from 10:30 am – 10:35 am California time.

Jenn IIIPlease look at Jenn’s picture, read the description of her condition below, and send her heaps of love, healing, positive energy, angelic protection, strength, courage, and any other goodness you can think of . I personally enjoy sending her dancing fairies with sparkly magic wands.

Meet you in the energy field tomorrow morning!

JENN’S WRITEUP ABOUT HER CONDITION:

 I am a 42 year old woman who has been sick for the past 9 years. Illness began in 2001, with onset of low cortisol levels and severe fatigue.  Unfortunately, my condition, tests, symptoms etc, are making it difficult to come to a firm diagnosis on what I am dealing with.   Prior to this illness, I was a very active, healthy, successful person.  

Professionally, was in finance at Goldman Sachs, Los Angeles for several years.  Then in 1996, I moved to San Francisco and kick-started several internet startup companies (one of the CheckPoint Software Technologies) grew that company from 20 employees to several thousand now.  I then started two of my own internet marketing companies (one still in business – but I had to step down) and one, which I sold to Excite.  

I also have been very physically fit, ie: daily exerciser, runner, cycling, spinning, yoga, hiking etc.  You get the picture. At this point – my pain is so severe, the fatigue unbearable,  and the skin condition so extensive on the face that I have not been able to work  at all the past 2 years. Prior to that I was able to work part time for my old company and do some independent consulting but no more. 

I love to read, write, draw, laugh, be with friends, movies, and work.  As for now, I am so ill from my condition as well as treatment (IVIG see below) – I have about 5-7 days a month, if that, where I feel a bit better but not good enough to go and do the things I so love to do.

 Symptoms Overview

Over the last year and half my symptoms have only gotten worse:

1) severe and chronic joint ,muscle and soft tissue pain

2) GI issues -nausea, unintended weight loss (at times I can drop to 100lbs and under in the short time of 5-7 days.  I am currently at 104 lbs. My lowest weight in the last few years was 92lbs)  

3) Severe Migraines (last from 1-3 days – occur in clusters) 

4) Skin Issues, lesions and red rash on face very similar to Malar lupus rash (looks like I have been slapped across the face), discoid rash around mouth (have had this 3x in the past 3yearss – seems to develop from exposure to sun – this type of rash is very painful, swelling like a circle around mouth, red, burning and raised.  Lasts for about a week and then skin hardens and peels off). 

5)Sensitivity to touch, ie: hurts to touch inside of my calves

6) Bruise easily

7) Swollen glands under right arm, neck and left and right cheek.

8) Fragile nail beds – nails split and break

9) Severe and debilitating fatigue not alleviated by rest.

10) Chronic Sinusitis

10) Lung Nodules

11) Liver Cyst

12) Pineal Gland Cyst

More detail on the most significant symptoms

Skin Lesions:

The new symptom over the last year, which has now become a chronic condition, is the emergence of blister like /bullous lesions on my face, back, and shoulders.  The blisters seem to appear quite quickly over what looks like normal skin , the blister-like lesions immediately break open and swell, then becoming cavernous (deep holed) and last for weeks prior to healing.  

As of today, I have had the same active lesions on my face for over a month only with a slight improvement (due to Vytone cream and Kenalog Injections).  The lesions  have “memory” since they appear in the same places on the body and same location of original blister…ie: corner of mouth (Right and Left), Chin (under lip – above lower chin in the normal indentation of the chin), above Right Eye Brow, Left Shoulder, Scalp etc.  

I also have a very enlarged swelling on my right cheek (looks at times like I have a Strawberry in my mouth) this gland for lack of a better description is under the skin, no redness, but it is palpable to the touch, ie can feel the outline of it in addition to the visual presentation of the swelling.  Over the last 2 weeks this swelling is the largest it has ever been.

Joint and Muscle Pain

Extreme joint pain: especially in ankles, knees, elbows, wrists, fingers – with some joint pain in hips but not to the extreme of the other. The Pain is a piercing sharp pain with a lot of heat to it – I have this pain every day all day long – somedays the pain is better than others.  On a 1-10 scale the average daily pain rating for me would be 6-7.  I often reach a 9 and 10 several times a week.  

Muscle Aches:  Muscles in thighs, upper arms are afflicted the most.  The pain in the muscles can go from dull ache to hot burning ache where it feels as if the muscles/soft tissue will just melt off the bone.

Lower back pain – radiates across the entire lower back region at times where it migrates to the abdomen.  

GI Issues:

GI Issues: Currently GI issues are under control – do have some kind of mildly active ileitis and mildly active colitis with surface erosion as per my last GI at Cedars Sinai in Los Angeles November 2008.  

Lung Nodules:

Two pulmonary nodules, non calcified 1-2MM each in bottom of left lung.  Found in January of 2009.  I am to have another CT scan in the next few weeks to determine any changes in number and size. 

Lab Summary Brief:

1)   Positive ANA AB

2)   High Ana Titers: 1:640 (Homogenous Pattern) now reading at 1:10240 with a mixed pattern speckled and homogeneous)

4)    Anti-DS DNA AB by Farr : 10.7 at highest at lowest 1.8 (at times this is negative) 

5)   Low C4 Complement: 12

6)   SED Rate ranges anywhere from 1-12

7) Tests for SCL, RA, SM AP , all negative

8)   HIGH MCH: 34.8

9)  HIgh MCV : 100.7

10) High Neutrophils 86.6

11) Low lymphocytes 10.1 

12) Low monocytes 3.0

13) Low ABS lymphs 9

10: IGM High: 306

11) Low Vitamin D 

12)  LOW IgG subclasses: IgG 2: 165 (range: 241-700) / IgG 4: 2.7 (range: 4-86)

13) RF 11.2

13) SKIN Biopsy: After eruption on left cheek shows not bacteria or immunofluorescence negative back in January 2009 – Lesion count has increased significantly since this time.

Current Treatment:

1)            100mg/day Azathioprine

2)    Pain Medication( Vicodin.Zanaflex as needed for pain)

3)            Colchicine .6mg 2 x day

4)            Clonazapam .5mg 1 x day anxiety

5)            Lorazapam 1mg at Bed time

5)    100mg Spironlactone

6)    IVIG infusions: Seven Treatments the last one being on October 2, 1009.  ) Treatments as of May 18th, 2009 (Flebogamma) and (Carimune) 18grams.  

We are not even close to a therapeutic amount given my difficulty with IVIG infusion – ie: aseptic meningitis-like reactions of which is controlled with Prednisone and Benadryl orally after treatment and IV during treatment.  IVIG infusions are painful during – ie: extreme muscle and joint aches – site reactions.  Had a Port-a-Cath surgically implanted August.  

Last IVIG infusion was with Gammagard 10% – and excruciatingly painful and long.  21 hour infusion with severe reactions that have to be medicated with Benadryl, Solumedrol and Morphine.  The infusions do seem to help with my pain and inflammation – it is the aftermath ie the reaction to the infusions that is so horrible during and for about 2 1/2 weeks afterward.  I am on heavy benadryl (100mgs every 4 1/2 hours and prednisone from 48mgs day on a titration down for the 3 weeks after the infusion.


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