Much overdue post.....

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Veteran Member

Date Joined Apr 2008
Total Posts : 605
   Posted 11/13/2009 1:56 AM (GMT -6)   
Hey Susie and Char!!!
I will post this on the fibro forum as well.  It's so good to post and to see that someone remembers me after so long shocked lol
Well to answer the ??? as what has happened with me,no, I haven't had the brain surgery as Medicaid won't pay for it.  I still desperately need it as the vessel in my head is more than 80% blocked and the neurosurgeon has said its not if but when its going to blow and with it cause major damage or death.  He has been pleading as well has my reg family doc,Dr. Roes with Medicaid to pay but Medicaid has said this procedure isn't covered and won't at anytime be covered.
I feel like I have a ticking time bomb in me.  I try to keep calm as this raises my blood pressure and is very dangerous but it's hard not to get upset.  I am having horrible fibro pain and not sure if it's a flare or just how it is now.  I am having pain in my arms and ankles and wrists daily.  It hurts so much to walk or hold even anything in my hands.  Jay has to carry my purse as well as everything else.  My nausea is getting badder as well as becoming ultra sensitive to most things.  I can't even enjoy eating anymore as everything tastes funny to me and I have trouble with swallowing and gagging.
I haven't been posting but a still do read almost every post in the fibro and pain forums and I so terribly miss talking to you all and need the support.  Just know that I am still here to laugh with you and cry with you.
I had to stop taking ambien for sleep as it was making me sleep walk!!!  I was falling and getting hurt almost nightly and then duhhhhhhhhhhhh I figured it out after I fell and broke some ribs and bruised my kidney!!!  So now even with melatonin I don't sleep much.
Jay is not working since his ^%$*** boss decided to fire him or rather "let" him go.  It was without warning and without good reason and he just now is getting unemployment after waiting on that for 2 months.  We were down to our last 47 bucks and were living off food stamps, so we, like so many ppl are cutting corners and driving each other crazy with him being home. 
Jayson has been for the most part really great.  He is doing a lot of stuff around the house to take care of me.  I feel so sad that I'm not able to do my part now, before I used to over do it and now I don't have the energy to even the basic things.  Hell,its hard to just take a bath, even that wipes me out.  I do have a referral supposedly to a pain clinic.  I haven't talked to them yet,and they are the same clinic that told me before that they didn't take Medicaid so we will see.   If it's true then maybe I can finally get some good pain relief as this is just getting crazy how undermediciated I am specially now.  So say a little prayer for me on the head thing.  I am sure not ready to die.
Well, this post had takin forever to write.  Take care everyone and God Bless.....

Mom of one gramma to 4 lover to One
Had another stroke 2/09 and it took my speach for the most part and dont know when it will coming back. Caused serious stroke symptoms on right side of body.
Fibromyalgia,IBS,Stroke x2,endometriosis,Diabetes type 2,neuropathic pain,nerve damage due to tailbone removel,nerve damage due to fractured back,deppresion,high blood pressure,severe nausea,atrophy,chronic pain,nerve damage due to botched bladder surgery,torn hip joint,hypoglycymic
Norco(double strength vicodin) 80 to 100 mg @ day
Ms Contin(morphine) 45 mg @ day,Lyrica 600mg @ day

Veteran Member

Date Joined Feb 2009
Total Posts : 686
   Posted 11/13/2009 7:18 AM (GMT -6) sure have a lot on your plate. I'm so sorry for all you are going through. I will say a prayer for you.
DX fibromyalgia 2007, osteoarthritis, obsessive-compulsive disorder OCD, depression, anxiety, sleep apnea, hysterectomy.

fluoxetine (prozac), abilify, trazodone, lorazepam, prilosec, nabumetone, hydrocodone, c-pap machine.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 11/13/2009 9:42 AM (GMT -6)   
Wow Karen I am sooo sorry to hear all that you are going thru. Sending healing prayers up for you and prayers that Jay can find a new job soon too.

Gentle Hugs
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 11/13/2009 9:55 AM (GMT -6)   
Hi Karen and you have been missed. I don't get how Medicaid can deny you the surgery??? Can you appeal their decision??? I'm sorry Jayson lost his job. I hope the pain gets better as you know stress makes us hurt more.
Write more when you can.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
Vit D/calcium

Veteran Member

Date Joined Apr 2004
Total Posts : 6056
   Posted 11/13/2009 12:13 PM (GMT -6)   
OMGosh Karen! I'm so wishing there was something I could do. Sending prayers.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross

Forum Moderator

Date Joined Apr 2005
Total Posts : 17061
   Posted 11/13/2009 2:32 PM (GMT -6)   
Karen, this is horrible!  I'm sending many prayers for health and also for a job for Jayson.  My sister-in-law had two brain anyurisms.  When the first one blew, she survived and they saw the other one in CAT scans.  They couldn't reach it because it was in the center of her brain so they had to let it go.  Seven years later, it blew, and she also survived that.  So, never give up!  Hopefully you can get it taken care of surgically.  Take care of  yourself and no lifting or smoking!  At least that's what the doctors told my sister-in-law.

Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Veteran Member

Date Joined Jul 2008
Total Posts : 1495
   Posted 11/14/2009 3:23 PM (GMT -6)   
What kind of brain surgery do you need? A fund raiser and some media attention might be in order.

Here is a group that helps people who have denied claims:

I have heard of radio stations doing fund raisers for medical treatments.

There has to be something we can do.

Veteran Member

Date Joined Jan 2009
Total Posts : 1014
   Posted 11/14/2009 7:32 PM (GMT -6)   
Oh Karen.. you're in my thoughts. I'm so sorry you're going through this. I wish I had an answer.. but I do think of you often and I hope you'll be ok.
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety DisorderDyslexia, Degenerative Disc Disease, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Meloxacam, XanaxLipitor, Talwin 
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown

Veteran Member

Date Joined Aug 2006
Total Posts : 9607
   Posted 11/15/2009 12:02 AM (GMT -6)   
It's outrageous that medicaid won't pay for the surgery, (I'm shocked)...Maybe you should write a letter to President Obama..
and let the press know you wrote a letter to the president, maybe then medicaid would cover it...might help...just a thought...
Prayers and hugz to you, take care and keep us posted, will be thinking of you often...
Lots of soft hugz
hugz, posts when your up to it, we luv ya....
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...


Veteran Member

Date Joined Aug 2008
Total Posts : 1771
   Posted 11/15/2009 9:59 AM (GMT -6)   
Oh Karen, what a lot to have to deal with. I'm sending (((hugs))) and prayers your way.

"There is no charm equal to tenderness of  heart." - Jane Austen

Sera Smiles
Veteran Member

Date Joined Nov 2006
Total Posts : 671
   Posted 11/16/2009 9:45 PM (GMT -6)   
Karen, I am so happy to see you online tonite! I think of you often and wonder how you are. I'm sorry you are having such a struggle. Perhaps a visit to your senator is in order. It sounds in funny but I have tried the strategy in the past and found it very helpful. Let us hear from you again and my prayers are with you.
"A butterfly is most vulnerable immediately after its' metamorphosis."
Dx FM- 2003
Rx Meds- Ultram, Toprol, Cymbalta, Ambien
OTC meds [PRN]- Aleve, Benadryl, B Complex, Vitamin D, Omega 3, Multi Vitamin

Veteran Member

Date Joined Jun 2006
Total Posts : 1156
   Posted 11/18/2009 9:59 PM (GMT -6)   
Oh Karen,

It is so good to hear from you. I have a friend who was refused the same treatment that you need. Keep up hope and feel better.

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