LisaFriday

Wow. I just re-read my signatures from the beginning to the end. 

Well- I weigh 125 pounds now. I did get down to 117 last summer, but my friends and family said I looked too thin.   I look amazing again, maybe better than I looked prior to my getting sick. I am very healthy and only take 20 mg of Hydrocortisone in the am and .1 Florinef. 

On the negative side, I got divorced two years ago this month from that amazing man who took such fantastic care of me for all those disastrous years.

Big mistake. But trying to forgive myself for it and move forward. 

I think and pray for all of my fellow Cushie's that are still out there struggling. Do not ever give up! Find the right Dr for you and you too can be healthy again.

God bless you all,

Lisa in Alabama

Feb 11, 2011 UPDATE:

I LOOK AMAaaaaaZING- with clothes on!

I weighed 140 lbs this morning...92 lbs lost...hip hip hooray!

(My goal weight is 132...only 8 more lbs and I will have lost 100 lbs!) WOW!

I am so super excited because I do not have extra skin!

I DO HAVE: SCARS! Lots of scars...

Spinal Fusion Scars on my back...it is awful looking.

Gastric Bypass, Hernia, BLA scars on my belly...so many scars...they are REALLY awful looking.

The Growth Hormone shots no longer have the horrible side effects:

all of those aches and true pain in my wrists, fingers, elbows...my goodness that hurt bad.

Now, just recently, most of that pain has subsided.

My elbows are still painful- but manageable with 3 extra strength tylenol.

My social life should be improving because of my outer appearance improving daily, but,

I just cannot seem to find my 'drive' and 'ambition' that I had prior to all of this sickness.

I like to be alone.

The old me was a 'social butterfly' and I used to be called the 'volunteer of America'.

I was so hyper and fun.

I loved life.

I lived every day like it was my last...where did that pre-Cushing's Lisa go?

So,

I went to my Primary Physician and she put me on Prozac.

She is hoping this will help me to 'mentally feel better'.

I have been on Wellbutrin for many, many years, and she thinks adding Prozac may give me the extra 'uuummmppphh' I am missing.

I have been on it a month now and I am beginning to go out in public a little more than before.

Also,

My body feels 'heavy' everyday.

It is like my arms feel like I cannot lift them.

I feel 'tired' most days until around 3pm.

Then I feel 'normal'.

I love it when I feel 'normal'...for 7 hours a day, I feel 'normal'...finally.

7 hours is sooo much better than when I had my adrenal glands and my Cushings was raging inside me!

I feel light headed and dizzy a lot.

I am 'short of breath' almost every time I lean over.

I feel the 'need' to sit all day long.

I am exhausted by 10pm.

I take 2 melatonin (5mg OTC) and 1 Xanax (.5mg) about an hour prior and am OUT at 10pm!

Let me wrap this update up:

I DO see the light at the end of this tunnel.

I do not regret any of my journey.

I am blessed to have my loving family, understanding and compassionate doctors and my faith.

God bless you all.

Love,

Lisa in Alabama

I have not been on the boards for a while because my energy level has been almost non-existent. I have to plan my day around trips to the potty and refrigerator. Ha Ha...

Well, that is some days...really most days.

On 'special days' I am able to shower, dress and go out.

I did go to Hawaii for a few days at the end of Oct. I flew first class with my flight attendant bff on one of her 'buddy passes'...So much fun...very relaxing on a different beach everyday!

I started Genotropin .2 Mini Quick's...I think I started about a month ago. The shots do not hurt a bit, but sometimes it makes a 'nickle size' bruise on my belly that I see at the injection site the next evening when I am about to do my daily injection.

As for side-effects:

Good= better mood, do not feel like a moody, unhappy Mom/wife/friend...losing weight in my abdomen and face!

Bad= my upper body aches and my hands/fingers feel like they cannot open containers, my wrists are too weak to get gallon jugs out of frige, my elbows and shoulder just feel terrible. Until I got on the board tonight I thought these symptoms were due to my left breast implant having deflated this past spring. I thought my body was 'rejecting' the broken silicone implant (saline filled).

ONCE AGAIN this board has made me feel 'sane' again!

I am so happy to know that these may just be symptoms of the GH!

I am not dying! I really thought I was...

Now, I need to determine whether or not I need to do the injections everyother day, or stop them completely?

I felt so BLESSED to get my tests to prove my need for GH, then to have Dr. L order the Genotropin, and have my BC/BS approve so quickly (within a month), and only have to pay $75/mo...

Anyway, 14 months ago I was soooo sick. I weighed 232lbs and was told Cushings was toooo rare for me to have. I was just a lazy, fat 39yr old woman who needed Gastric Bypass or I was certain to have my 5th back surgery (my 3rd fusion).

So, today I weighed 155 lbs yesterday! Almost 80lbs! Even though my upper body's joints ache like crazy I would rather this than what I was!

I am so blesssed to have Dr. Ludlam and his team taking care of me. I also have an incredible NEW Endo here in Tuscaloosa, Alabama, Dr. Toheed Kamal. He is completely 'on board' with my Cushings Disease 'remission' and Growth Hormone and thyroid Greplacement. He is also helping find the perfect steroid replacement dosage. I tried 20mg once a day and .1 Florinef, and I was too weak and breathless. So, he upped me to 20 in am and another 10 around lunchtime. I also take another .1 Florinef at lunch too! My energy returned and my breath is back! Yay...

As for my family...my husband and 16 yr old daughter are wonderful, but my mother and friends support is 'thin'. They want me to feel great because I am looking so great. Sorry to once again disappoint them.

Well, I am now going to have 'carpal tunnel' from this post...sorry.

May you all get the Doctor you need and deserve.

TODAY, AUGUST 10, 2010: I AM CUSHING's FREE and ADRENAL INSUFFICIENT...

I had my BLA in Seattle on July 28, and flew home to Alabama on August 1st.

I really was on a 'high' when I got home.

I was determined to not be sick anymore.

I did not do as Dr. Ludlam advised...I did not rest. I did not take it easy.

I tried to 'act' as if I was 'in remission'...

Well, on Friday, August 6th, at 3am I woke up to my throat feeling really tight.

I thought I might be getting a sore throat.

As the day progressed, my throat seemed smaller and I was having difficulty breathing.

I called Dr. Ludlam in Seattle and he said I must go to the ER.

UGGHHHH!!!

After a throat culture, chest X-Ray, CT Scan w/Contrast, bloodwork, etc...

I HAVE:

Thrush (caused by a reaction to the Hydrocortisone pills that I am taking).

'Fluid' in my chest (as seen on the CT Scan), a precursor to pneumonia...

So, I was sent home 7.5 hours later with an antibiotic (z-pac) and a 'swish' for my throat...yuck!

Since arriving home from the ER, I have not left my bed except to tinkle, eat, and I have only showered once...yuck!

My throat got a lot worse over the weekend...I have had a very difficult time eating/drinking/really swallowing sucks!

I slept almost 24/7 for the entire weekend.

Dr. Ludlam was right, I needed the rest. I am/was exhausted.

Today is Tuesday, August 10th. I have lost about 8 lbs. I cannot decide if I would have lost this weight if I had not had this throat issue...it hurts to eat/drink, so, that is probably why...but, who knows, maybe I am starting to lose the BLA weight????

My wean is going good: 30/20/20 for the third day in a row. Day one of 30/20/20 was terrible, but, I am also trying to get off my pain meds too, so, that could have been an issue as well.

So far, this BLA is going 'as I had hoped'...I guess.

My shortness of breath after doing easy tasks like laundry/dishes/cooking/watering plants/showering is a definite problem. I hope that I begin to get stronger soon.

Anyway, this is my August 10th update to my Cushing's Journey...

TODAY, AUGUST 10, 2010: I AM CUSHING's FREE and ADRENAL INSUFFICIENT...

I had my BLA in Seattle on July 28, and flew home to Alabama on August 1st.

I really was on a 'high' when I got home.

I was determined to not be sick anymore.

I did not do as Dr. Ludlam advised...I did not rest. I did not take it easy.

I tried to 'act' as if I was 'in remission'...

Well, on Friday, August 6th, at 3am I woke up to my throat feeling really tight.

I thought I might be getting a sore throat.

As the day progressed, my throat seemed smaller and I was having difficulty breathing.

I called Dr. Ludlam in Seattle and he said I must go to the ER.

UGGHHHH!!!

After a throat culture, chest X-Ray, CT Scan w/Contrast, bloodwork, etc...

I HAVE:

Thrush (caused by a reaction to the Hydrocortisone pills that I am taking).

'Fluid' in my chest (as seen on the CT Scan), a precursor to pneumonia...

So, I was sent home 7.5 hours later with an antibiotic (z-pac) and a 'swish' for my throat...yuck!

Since arriving home from the ER, I have not left my bed except to tinkle, eat, and I have only showered once...yuck!

My throat got a lot worse over the weekend...I have had a very difficult time eating/drinking/really swallowing sucks!

I slept almost 24/7 for the entire weekend.

Dr. Ludlam was right, I needed the rest. I am/was exhausted.

Today is Tuesday, August 10th. I have lost about 8 lbs. I cannot decide if I would have lost this weight if I had not had this throat issue...it hurts to eat/drink, so, that is probably why...but, who knows, maybe I am starting to lose the BLA weight????

My wean is going good: 30/20/20 for the third day in a row. Day one of 30/20/20 was terrible, but, I am also trying to get off my pain meds too, so, that could have been an issue as well.

So far, this BLA is going 'as I had hoped'...I guess.

My shortness of breath after doing easy tasks like laundry/dishes/cooking/watering plants/showering is a definite problem. I hope that I begin to get stronger soon.

Anyway, this is my August 10th update to my Cushing's Journey...

SEE MY 2010 TIPS LIST for Camp Cushie on the WASHINGTON STATE forum board...

If you are planning a visit there in the upcoming future,

I have tried to compile a list of tips that would benefit the 2010 attendee!

I researched these boards prior to flying from Alabama to Seattle, WA on July 11, 2010.

I have found that a lot of the advice on the boards concerning CCushie needed some updating.

PLUS,

I wanted all of the info in one place!

So,

I hope it helps anyone headed to Seattle!

Enjoy Camp Cushie.

May you have the "HIGH's OF YOUR LIFE" while you are there!

XXOO,

Lisa

Wow!

Since posting last (on July 6th), my life has been in high gear!

Well,

I did go to camp cushie in Seattle...July 12-16th...

Totally blew all my tests out of the water...

Finally had two high UFC's...95 and 72! (below 50 is normal)

My CRH/DEX test was totally off the charts!

My ACTH was high on everything.

I had a Octreotide Scan too....nothing 'remarkable'...

Anyway,

Dr. Ludlam had me cleared for Pituitary Surgery number 2 on July 20th w/Dr. Mayberg...

Surgery went without a 'hitch'...easy surgery...just my cortisol never went below an 11...

so, another unsuccessful pit surgery.

Dr. Mayberg left me 30% of my gland.

He was willing to go back in on Friday the 23rd, but, he told me he recommends BLA instead.

So,

BLA here I come...this coming Wed, July 28th with Dr. Michael Hart, here in Seattle at Swedish Hospital.

Dr. Ludlam is confident that this is the correct path for me...

I am excited to be in remission this time next week.

I know that I will be on meds for the rest of my life,

But,

I am thrilled to be Adrenal Insufficient instead of Cushingoid!

I am so ready to start "LIVING" again!!!!

UPDATE to my Signature:

I am postponing my Seattle Adventure for six months...

Instead,

I am doing a 'six month study' with a well-respected surgeon, Dr. William (Skip) Pridgen of Tuscaloosa, AL.

He has been researching the HSV I virus and it's relationship with the disease Fibromyalgia.

He has found that 85% of his Fibromyalgia patients test positive for the HSV I virus.

He feels that many, if not all, of my Cushings Disease symptoms are directly related to what he is researching.

So, I have decided to try his medication regimen for the next six months (July to Dec 2010).

He does a combination of two medications:

Famciclovir 250mg twice/day OR Valaciclovir 500mg/day

AND

Celebrex (Celexicob) at a starting dose of 200mg once/day OR Meloxicam (MOBIC) 15mg once/day.

At the end of the six months if I am still having Cushings symptoms, I plan to reschedule my Camp Cushie/2nd Pit Surgery.

I will keep you all posted on this thread of my progress.

May God bless you all,

Lisa in Alabama

FYI:

I had never been diagnosed with Fibromyalgia (or even thought to be tested for prior to my appt with Dr. Pridgen last Thurs).

Also, if any of this interests you, go to:

http://www.tuscaloosasurgery.com/research.htm

OR

Private Message me and I will give you his phone number and my progression.

Dr. Pridgen has NEVER denied my diagnosis of Cushings Disease.

In fact, he feels that Fibromyalgia is the "TREE"

and Cushings Disease is one of this mean old tree's "LEAVES"....

Typing this to see if Post #19 helped someone as computer insufficient/illiterate as me can update/fix my long signature.

We will soon see if I can follow her detailed directions from #19's post...

 

NOPE...

Mary O-

I am so sorry.

When I click on my "Lisa in Alabama's Signature", I get the red 'error' page...

I will try to do it again...

I hate being so stupid when it comes to this computer stuff...sorry.

Lisa in Alabama

I DID IT!

Thank you Susan for your post #19 on this thread...I needed to have it step by step...

YEAH!!!!

Typing this to see if Post #19 helped someone as computer insufficient/illiterate as me can update/fix my long signature.

We will soon see if I can follow her detailed directions from #19's post...

NOPE...

Mary O-

I am so sorry.

When I click on my "Lisa in Alabama's Signature", I get the red 'error' page...

I will try to do it again...

I hate being so stupid when it comes to this computer stuff...sorry.

Lisa in Alabama

Oct 2009- I had RNY-Gastric Bypass Surgery, my Dr's told me Cushing's was too RARE, and that I was just FAT...

Nov 2009- Endo dx Cushings Disease

Feb 2010- IPSS-Left side

April 7 2010 Pituitary Surgery-Dr. Kristen Riley (UAB Birmingham, AL.) 'suspicious-looking' pit tissue removed

April 8 2010 8am Cortisol level 24

April 9 2010 8am Cortisol level 22

April 10 2010 Go home with NO meds and NO PLAN- just a modified pituitary gland

April 15 2010 Pathology Report: All 'healthy' pituitary tissue, NO ACTH found, NO tumor removed

April 15 2010 Lab Results: Cortisol 14.5 (normal), ACTH 42 (<45 normal)

April 29 2010 Follow up appt w/Neurosurgeon:

She told me: I DID NOT and DO NOT have Cushings Disease.

She told me: TO DO NOTHING until I have a positive result with "THE Cushings GOLD STANDARD TEST": 24HrUFC

June 3, 2010 Phone consult with Dr Ludlam at Swedish Hospital in Seattle, WA.:

He told me: I DID and STILL DO have Cushings Disease.

He told me: I needed a 'Cushings Experienced Neurosurgeon' to remove the tumor/tissue.

SO-

I am HEADED TO "CAMP CUSHIE" for a week of intense testing...

I will stay in Seattle for the weekend,

THEN I am tentatively scheduled for TRANS PIT SURG #2 the Tuesday after "Camp Cushie" w/Dr. Mayberg.

I AM SO EXCITED...

I FEEL 'VALIDATED' ONCE AGAIN.

SO HOPEFUL...AND I AM SO GRATEFUL for all of your wisdom/advice/support/experience/love!!!!

Mary,

Would love to buy XL mens Boxer Shorts for my husband...he is my main caregiver.

My daughter (age 15) would love 'sleep' pants with/ "Cush" on the rear... Not TUSH... ha/ha! Actually, I would wear those too, but I would need an XL or an XXL.

I wear ballcaps (made for women) daily because my hair is getting so thin, so, the black cap would be of daily use for me!

I would also love a grey hooded sweatshirt that looks like a college shirt... "CUSHINGS" nothing else... no bright colors. Just understated royal blue wording maybe.

Hope this helps... but, I am really interested/excited.

Love and blessings,

Lisa