Replies to This Discussion

Permalink Reply by Andrea on July 29, 2010 at 7:06pm

Pam, I am so glad I got this feed in my email. I don't check here too often since my hair has grown back. You hairloss sounds like mine...about 95% my mother estimates, in overall loss, not any particular area. My loss was directly due to my Lupus (only officially diagnosed in December). About 54% of Lupus patients experience hair loss. It's not that I don't trust your doctors, but all of your symptoms can actually manifest in Lupus patients, so have you had your Rheumatoid Factor, C-Reactive Protein, Sedimentation Rate, and Anti Neucleic Antibodies (ANA) checked? Sometimes if you didn't go to the right specialist they will overlook the most obvious. These are simple tests and I'd rather see Lupus ruled out if they haven't already.

I was bedridden for several months with this disease. The pain was horrific and there was no relief, not even narcotics could dull it. I was nauseous and losing weight hand over fist. I was 108 pounds (at 5'9"). Then I would see myself in a mirror and just cry. I definitely looked like a chemo patient. I looked like death warmed over. I had a friend visit me in November and he just recently confided in me that he was convinced the Lord was going to call me Home. In all honesty I was begging God to bring me Home.

This is when we are desperate for His touch...or to touch Him...maybe just the Hem of His garment. I can't offer any words to comfort you and I most certainly can't guarantee you'll be healed. It is a false doctrine that says all Christians will receive healing on this earth. We will receive it when we enter His kingdom. Reach out for that hem and touch it. Feel the power of the Holy Spirit fill you, with the healing you need the most...the healing of your soul. When our soul is filled with Him, we can do all things through Christ who gives us strength...

And never forget who He is...

Psalm 23

1The LORD is my shepherd; I shall not want.
2He maketh me to lie down in green pastures: he leadeth me beside the still waters.
3He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
4Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
5Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
6Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.

I've never understood why that is so popular for funerals...it's about life and Him carrying us through it.

Blessings,
Andrea

Permalink Reply by Chefpam on July 30, 2010 at 8:53am

Thank you so much Andrea for your reply to me. I have just been on here 5 minutes and have gotten 2 messages from people telling me this sounds like Lupus!! WOW, maybe there's something there. My dr ruled out Lupus. He said my Xrays show my spine fusing,thus I have AS. But he also makes jokes at my expense. SO I am waiting to get in with another rheumy ASAP. AND I am going to request EVERYTHING be checked again. To be honest I don't know what has been checked and what has not. I have been so sick I feel like I can't even think at this point. I washed my hair again yesterday and it was the same thing. UNREAL!! My Mom had to come and help me. I am just in shock. This is taking a toll on everything and all I do is pretty much sit in this house now. AND I was so vibrant and had my career just 8 months ago....I have been begging to just get to nip his garment, to feel Him, to have something come from Him to keep me going. I have also been reading the Lord's Prayer and how as our shephard He takes care of us and doesn't want us to hurt...so I am a bit confused. I love God with all my heart and WILL never turn my back on Him but I do feel a little forgotten right now.
Can you tell me with what treatment you got well again and got your hair back? Thanks for taking the time to talk to me. It means so much you when you feel all alone and forsaken. Hugs.

Permalink Reply by Chefpam on July 30, 2010 at 12:41pm

I had this and it was negative. He based my AS on xrays according to him. So you have Lupus and are living a normal life now with your hair returning also? Please tell me what you are taking. What should I do!!???

Permalink Reply by Andrea on July 30, 2010 at 1:48pm

I'm not quite "normal" yet but at least I'm in the ball park. From what my doctor says it can take about a year to reach true stabilization, especially as bad as I was. What turned me around was Plaquinel (Hydroxychor). It's an anti-malarial. About a month on that and my hair started returning. I am also on Neurontin (Gabapentin) which is an anti-convulsant.

I'm stunned with all the very easy tests out there that he hasn't run some of the most basic tests. Please do get in with another rheumatologist. They are worth their weight in gold when you get a good one. And under no uncertain circumstance is it acceptable to make jokes at your expense.

Also, it is possible to have comorbidity of diseases. I'm not saying this is the case but if you have 2 they would exascerbate one another and make each other worse. Technically I have both Lupus and Fibromyalgia, but I deny the Fibro as I hate the word and people think you're a headcase if you say it. But they definitely make each other worse. Getting one under control can give you a fighting chance with the other.

I understand the loss. Just before I started going really downhill I finished my education to be an interior designer. I have yet to work in the field and wonder if I ever will be able to. No, God doesn't WANT us to hurt but He does allow us to. All things work together for the good of those who love God and are called according to His purpose. Somehow, through this, He can bring about your betterment and HIS Glory! Remember, He can be glorified in this. God can use our hurt much more than our successes to show His glory.

I will keep you in prayer that the physicians will be guided with wisdom.

Permalink Reply by Chefpam on July 30, 2010 at 1:52pm

Thank you for replying. I am just so overwhelmed that I am not functioning very well. I researched the list of symptoms in Lupus and I have every one of them except the seizures and fever. I am waiting for a cancellation to even get to see a new rheumy. It seems hopeless at times. Thanks for your prayers.

Permalink Reply by Bernice Jones Williams on July 31, 2010 at 10:19pm

Thank you and Andrea for sharing your stories... I was moved to tears, because dispite my diabetes, thyroid disease and thalasemia ( a type of sickel cell) I am blessed to be pain free and active. At age 69, I'm told that I look and act 50!! Keep the faith and read His word daily to find strength and comfort. I will keep you in my daily prayers and ask my church prayer group to add you to their list. Be strong and when you feel to weak, call me 586 465 1458. In His Care, Dr. Bernice Williams

Permalink Reply by Chefpam on August 5, 2010 at 3:29pm

Thank you I just saw this. I have so many good christian souls praying for me. Something has to give. I am being so attacked by Satan. Even in my sleep last night I dreamed he was smothering me and I woke up screaming, "I hate you Satan and I rebuke this in the name of Jesus. He is never going to win so why won't he leave me alone. I am in so much agony from my AS I can barely move. I stopped the Humira because I don't see the point in taking such a controversial drug and being in so much pain anyway. I am at a loss and can't see a dr until the 16th. My hair continues to literally fall out with every touch. I cry when I look in the mirror. I know God has a plan but I need Him to lift me up today. I really feel like I can't take anymore.....Hugs to you.

Permalink Reply by Andrea on August 18, 2010 at 2:15am

Just checking in again to see how your appointment went Pam.

Thank you for your edifying testimony, Bernice :-)

Permalink Reply by Chefpam on August 18, 2010 at 11:33am

My old rheumy just finalized my decision to leave him behind during our appt. I have one on the 26th with a new one. Thanks for asking....I am not on any meds, the pain is returning, the hair is still going...

Permalink Reply by Sherry Washington on August 30, 2010 at 2:39pm

You know the meds can have an affect on your hairloss. I remember when I was going through the hairloss, they were looking profusely for an undiagnosed thyroid so they could stop the hairloss. However, thyroids, blood pressure meds and no telling what else thins your hair or cause it to fall out.

Permalink Reply by Chefpam on August 30, 2010 at 5:24pm

I have stopped all meds except my thyroid meds and it is falling out worse....makes no sense. I even went off it once and my TSH sky rocketed.