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

By: Loolwa Khazzoom, Founder, Dancing with Pain

November 14th, 2009 • Mind-Body MedicinePrint Print

(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.



Comments

Lori November 15th, 2009

Hello, my words cannot adequately describe my absolute shock over your friends condition.  My thoughts and prayers are with her in her suffering, and with you, as her friend.  It is difficult to stand by someone and and know they are is such pain.  Perhaps I missed it somewhere, but what diagnosis does she have so far?  Has she had all symptoms from the beginning or did it start with some and develop with others.  The other questions I thought of while I was reading were as follows.  What were the other things going on in her life when this happened;  jobs, boyfriends, travel, pets, anything that could have initiated any of the symptoms individually?  I realize that is probably the first thing she thought of but I would be more interested in looking at each of the symptoms individually then as a group, as one may be manifesting the other, layer upon layer.    Which tends to be so common, where every treatment has its own reaction, after a while, you don’t know where it began.  Where is she being treated?  You mentioned she was at the best location for her condition, I was just curious.

I would guess that if I am expecting for you to be candid with your information, I will offer some of my own, to keep it balanced , OK?  First of all, I am not a doctor.  I am 45yrs. old and have suffered tremendously as a 24 yr. chronic pain patient,  which as you know that itself comes with a degree of knowledge and understanding all its own.

 We  expect that pain would be a doctors first concern, and when you find out that most doctors don’t even get a formal training about pain in their education and that its been only recently that pain has become a trend worthy issue, standard med students at the prestigious Johns Hopkins get less than 20 mins. of education on the topic of pain itself !!!!!!, once you pull your lip off the floor, unwrap your brain that has gone into a spasm unwilling to budge, you then realize why they do and not do the things they do and not do.  That is a run on sentence but I just apologize and keep on going, hoping that long emails don’t bug you and also that you are willing to read more than your average couple of words that most people are willing to type on any given topic.

 I suppose its not  a mystery that I am more than a little jaded on the topic of pain, and I will tell you why.  After losing an entire life, husband, home, career, friends, his family, that had been cultivated and eventually lost due to the unimaginable pain I was in every single minute of the day, after seeing and paying for well over 50 doctors out of pocket for 80% of them;  acupuncturists, chiropractors, orthopaedic surgeons, orthodontists, pain specialists, hypnotists, Ive had hands laid on me twice, I believe I even levitated the second time, just between you and I, etc. I have been sentenced to be put in a mental hospital twice, and both against my own will, all because of depression.  All with no diagnosis, no treatment, no care.

Somewhere a star was shining on me and I managed to run into and fall head over heels in love with my new husband, new and improved number two.  Strangely enough he was a budding scientist at Johns Hopkins, and thought at the time he was doing AIDS research, he later went on to take a job in trauma outcomes, at Hopkins as well.  After watching the path I was on, he slowly carved a niche for himself in Pain research and slowly became an actually big name in the field.  Hes a numbers  and model person.  Strange as it was I was starting to learn a lot about what medicine knows and doesn’t know about treating pain.  It was depressing.  

So with all that said,  I don’t have any answers for your friend right off the bat, but I would be quite willing to make an effort to take her case up with him and perhaps he might have if nothing else a direction she could take. 

Also, I must share with you the name of a group of clinics that have taken up the cause of fibromyalgia patients.  I went to the closest one to me which was in Philadelphia, you may have heard about them, there are quite a few them now, Fibro and Fatigue Centers, I had been monitoring the chat of many popular pain sites rooms in order to hear if anything was working for anyone.  It wasn’t long before I saw the clinics mentioned one time, before I started to notice it being mentioned again and again, with not just positive results, but people were getting better, all the way better.  Healed, period, end of story.  So like everything else Ive heard of , researched and eventually collected enough money to go to, I went to the nearest clinic which for me was Phili.  I live in Baltimore. 

So when I went, they were extremely understanding of who I was as a patient.  Nothing I said or did seemed out of the ordinary for them.  It wasn’t until I got to the end of my second appt. did I really understand why.  The first appt. they take what seems like gallons of blood, you have a 2 1/2 hr. interview with your doctor who sits and listens while you tell him about your condition from beginning to end.   I cant remember but I think that was essentially it for that appt.  When your blood work comes back and your doctor has done a full review of your case, I think its 2 wks later, you come back and they will go over your results and explain your treatment.  Their take on fibromyalgia and really anything they come across I suppose, is  first and foremost a nutritional issue, they believe that once the body has regained its status of health, its own immune responses will take care of the rest and this is of course a very simplified version of their deal but I will tell you, they have the answer.  As far as medicine goes they understood me as a patient and what I needed better than anyone Ive found.  They have it right.

At the end of my second appt. I was taken to a room that was filled with recliner chairs, beside each was a table with magazines and a bottle of water.  I think there might have even been earphones if Im not mistaken.  Not that you would use them, as what takes place there is the most valuable element of their care.  You sit for about an hour while you are given an IV that is essentially a cocktail of nutrition designed for you personally.  Bypassing the normal digestion tract is a huge part of most patients issue, as vitamin absorption is a biggy.  But that is only half of the big benefit you will find in this room, for while you sit there, there are other pain patients doing the same.  It is impossible to sit there for very long without talking and what you hear is simply amazing.  Suddenly you realize that for one, you are not alone, and secondly, you are not the worst, which in some twisted way is assuring. 

Lives are being ruined beyond belief, and I think that this is what makes it easy for doctors to brush  care for these people off, their stories are unbelievable, and there is sometimes no one does who believe them, for some not even the patient’s own family believe them, for it is always easier to believe that someone is a drug addict looking for drugs, than it is to believe the reality for so many people that are sitting inside their homes or apts. , alone, demoralized, broke,and tragically will never be known for what they really were, which was someone in immense physical pain.  Instead they will be considered a mental health failure, ending in, what for all pain patients that are sick for very long, a daily, hourly, min. by min. issue of suicide…just to make it stop for one minute.

I wasn’t able to remain a patient with them, as finances and the car ride there un-did every speck of progress I made there.  However, they have just opened one here in Baltimore and I look forward to going back.  I know it is there I will get better.  I just know it.  It worth noting that I am in no way connected with them professionally.

Let me say this before I end.  I know this is written terribly.  I only had a short time to write so I just wrote it without and editing.  Your site got snagged on my pain e-alert filter, and I am so glad that it did.  I love to dance and was the same kind of fiend you say you were.  I love your concept and look forward to knowing more about it and you.  I do apologize about the length of this email.  But somethings just need space………..
                                                                                                               like dancing.

Sabra November 18th, 2009

Hi Jennifer,

I think we may have the same disease, and with this disease there tends to be comorbidity with other diseases. Write to me, and I will give you all the info I can.

Hang in there hon,
Sabra

Dawn Sora Yang November 24th, 2009

THANK YOU for doing this for dear Jennifer.  Anyone that knows her knows what an amazing soul she is.  I met Jennifer about 6 1/2 years ago and we instantly connected.  She is everything above and MORE.  Jennifer is a FIGHTER and a true inspiration!   I adore seeing the pictures posted above of me and Jennifer…. those were some great times!  I know right now she is not feeling well and just needs our positive energy sent her way. Thank you for spreading an awareness of her situation so hopefully someone out there can help her.    Jennifer, I love you!   All my love, Dawn

Laurie Green November 26th, 2009

Jen,
I am thinking about you, praying for you and hope you will soon find a cure for what you have had to deal with for so long. It’s times like these that you realize who your true friends are. Your friend who took the time to make this page for you and to create awareness for your situation is truly amazing.
All my love,
Laurie

Caroline December 13th, 2009

My dear fellow pain partner and friend of near 40 years.  Your strength is amazing is together we are going to kick this stuff!

a b April 24th, 2010

Hello Ladies (and Gents, if reading),
 
Just found your site, looking for IVIG info because of my friend’s condition.  Blessings to you all, keep up the good fight!
 
In the research I have done, I am finding that many DRUGS CAUSE NUTRITIONAL DEFICIENCIES!   But of course the pharmaceutical companies don’t want you to know that.  Many books coming out today are basically telling you, “you are what you eat” and I can vouch for that personally.  I gave up chemicals, preservatives, artificial coloring and flavoring, white flour, refined sugar, high fructose corn syrup (found in most processed foods), hydroginated oils (since when does your body need hydrogen?) and most of the time dairy and grains.  I lost weight (not a lot, but since I am a slender person, it was enough) and feel lots better.  I increased my vitamin and supplement intake (get quality stuff, I use Dr. Whitaker’s Forward Plus and a few others).
 
If this sounds like work, well, just get a magnifying glass and read the labels of your food.  Ewww!   Scary!  Double Ewww!  Why would you eat something you can’t pronounce?  And what is really hiding behind the category “artificial color and flavor”?  Aspartame — it turns into formaldehyde in your body.
 
The best advice I got from a doctor was, “If it’s not off a tree, out of the ground, or freshly caught, you don’t need it.”  When man started “refining” food, it changed the electrical and chemical composition of it, and therefore our bodies react accordingly.
 
I know it seems like a big change, but try just a few things, organic if possible, and you’ll taste the difference.
 
Another thing, the vitamin infusion previously mentioned is a necessity to get you back on track.  My friend is taking them and it does help.  It helps your cells flush out the toxins and feeds them nutrients needed, without going through the digestive process.  Originally called the “Myers Cocktail,”  most health/wellness doctors should be aware of it.
 
Best of luck to all of you, thanks for the caring you share.
 
 

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