Thursday, May 31, 2012

Recently Diagnosed

By Rita Thursday, December 11, 2008

Hi Friends,

Well it's nice to know that I'm not alone.  I've had RA for 4 months and tried a vegan diet to reverse the affects. It's not working for me and since the RA is spreading to my other joints I'm off to see a rheumy today and hope he can put me out of my pain.  I don't feel very encouraged by reading that the meds aren't working for alot of you.  I hope that they work for me. I use to be very active like the ever ready bunny and enjoyed multitasking.  I find that everything has had to s l o w down. I'm learning that it's ok to let the dishes pile up and I'm learning to ask for help and have friends come over and blow dry my hair and help me out around the house.  Thank God for girlfriends!  I have God in my life and that helps encourage me to get thru the day and to also help me do things while I'm in pain like getting out of bed and putting on a blouse since my shoulders and fingers hurt so bad. ouch!  I pray for strength and courage to get thru the day and for Him to carry me thru since I do not have the strength and would rather just stay in bed.  So far it's working for me to not just rely on myself but on Him that is greater than me.  Blessings! Rita

Experience with Ankylosing Spondilitis Onset
12/12/08 3:32pm

Hi,

Please don't spend too much time in bed, as that will only weaken you more and depress you. Try water therapy, gentle swimming or if you're able to walk or use a stationery exercise bike. It is essential that you keep your joints moving as often as you can as that will save your mobility. I see you have good faith too. I wish i had more faith and hope as that is very important when you are struggling on a daily basis with this illness. Good luck to you and mind yourself.

                                               ger.

12/15/08 6:03pm

How did your rheumy appointment go?  Welcome to a great community of supportive people who know just how you feel!  I also struggle with wanting to lie in bed because moving hurts!  I'm still waiting to find my "miracle" drug!

12/15/08 7:15pm

Hi!

Thank you for asking!  I am feeling alot better!!!  I have been on Prednisone for 4 days and then reduce each week until the Methotraxate kicks in.  The inflamation has gone down probably by 70%!  So my pain level went from an 8 to about a 2.  Im trying not to overdo it.

 

My Rheumy was awesome very compassionate man. It was hard to hear him say that I would be feeling better by the weekend and it was sooner than that. God is so good! I wish I would have gone to the Rheummy earlier.

 

My prayer is for the Methotraxate to work and not have to go on another medicine. Doctor says there is a 30 percent chance may not work but this is the standard route to go or insurance won't allow to try other meds.  I'm still trying to stick to eating healthy since all the meds are hard on my body but the predinose makes me so hungry!  I've strayed away from my healthy diet and am ravenous around the clock.   I also get this "euphoria" not like  caffeine jolt but like a wave that slowly engulfs me that I can do alot of things like before but then I feel the pain and exhaustian later.  It's very deceiving.

 

What have you tried that has not worked?

 

 

12/15/08 7:40pm

That's great!  I hope that you continue to feel good as your prednisone dosage is lowered!  It's important to have a compassionate rheumy, and one who listens to you!  That's awesome!

 

I wish that my meds gave me a "euphoric" feeling! LOL!  (only the vicodin does that! :-p)  lol just kidding

 

 

In the beginning, my rheumy started me on prednisone, of course... and the more 'mild' meds like plaquenil, celebrex, sulfasalazine, and some others that I can't even remember.  Pretty quickly he had me on methotrexate (I've had both the tablets and the injectable), and then Enbrel.  Enbrel worked great for a while a couple of years.  I still had flare ups, but the average day to day was better!  Then the enbrel started to not work so well... and went downhill from there.  My rheumy wasn't listening to me at my appointments anymore.. I felt like the appointments were just a formality.  Finally I was in his office literally tears streaming down my face, telling him that the enbrel just was not helping like it should anymore... and he said "Oh you're just having a flare, we'll give you some prednisone and you'll be fine!"  And he sent me on my way.  Not a whole lot longer after that I found another rheumy.  My new rheumy is great!  She has me on 5 mg of prednisone, 6 tablets of methotrexate, folic acid, and Orencia.  Orencia is given through an IV once a month.  I've been on that for a little over 3 months now, and personally I'm ready to try something new.  It's not helping at all, and I have 4 young boys to take care of.  But she said we have to give it 6 months before we can consider it failed.  So I go back in March, and if it's not helping by then we'll talk about something different. 

 

I'm kind of beginning to wonder if there's anything out there that will work for me.  I think after all these years, I've kind of, sort of, made my peace that this could be it for me.  And if this is as good as it gets, I'll just keep doing what I can do to get by, and find joy in my children. =) 

 

 

12/15/08 7:40pm

oops... I didn't mean to say "what have you tried that has not worked" lol... that was left over from your comment lol

12/16/08 5:19pm

Hi Suzi

Thank you for your encouragement!  Wow sounds like you have had some challenges with your meds.  I admire your courage and ability to surrender to your circumstances which makes you strong in faith.   I have been hurting today mostly because Im under alot of stress. My house got foreclosed on 2 weeks ago and I got a 3 day notice to vacate last night. I know everything is going to work and God is going to take care of me out but physically my body is freaking out.  Im a single mom with a 12 year old and was out of work for 10 months in the lending field and praise God I got a good full time job 3 months back so I requested an 45 day extension and I find out Wed morning if they will approve it.  Eek when it rains it pours.  I feel like I should go get some antidepressant to take the edge off.  I' m not sure if it will interefere with my meds.  I think that i will call my rheumy and ask.  In the meantime I keep giving all my burdens to the Lord and putting them on his Altar because I cannot do this on my own.  Its too much.  It helps to know that its not all up to me and that He is in control and  soveriegn. I just have to keep my eye on him and not lose sight of Him.  I think about his promises that he will never leave me or forsake me and that God only has good plans for me.

 

Suzie You are a great Mighty Warrior hang in there!

 

Blessings! Rita 

12/18/08 10:30am

Hi, My daughter is in the ame boat as you and someone gave her the advice to drink cinnemon and honey.  The real cinnemon  sticks (just grind them) or Ceylon cinnemon

It works !!

It cant harm to try that too

God bless and will pray for you - because I believe just ons touch from God and you are healed.

12/18/08 10:33am

Hi, Me again - "ame" boat should read "same" boat -  sorry about that. By the way my name is also Rita

God Bless

12/19/08 11:56am

Hi Rita... I read your post and  just wanted you to know that your not alone...

I was 21 when I was diagnosed with lupus...Im 32 now 5 kids later  I have RA..Fibromylgia...The Rheumy will start you off with the methotrexate  for insurance purposes..also if your in pain My rheumy gives my cortisone shots with  B12 they take the swelling down and do help with the pain...These cold days have been horible for me...I literally cant get out of bed..I make myself..my husband works so much that ..I have to do everything..I mean when he's here hes an awesome husband..tries to help in everything...but he works so much...Im on so many meds also..and the one I have seen work for me is..Enbrel..it does make you feel better...but not everyone is the same...

With these disease what you need to do is just surender..Not let it beat you...or control you...But just say ok I have it and I just got to do things different...If your tired ..dont beat yourself up...Take a nap..or if you cant walk as much..Dont...I started to do that...And boy what a load off my back...I was  the type of person that cried all the time..because I couldnt do certain things...or didnt have energy..or I felt guilty...But you know what..God is in control...sometimes we dont understand...But this is making us stronger...We just need to be thankful for the blessings that we do have...and for the things that we can do...even if its with help...We can do them...

I hope I was a lil help to you....

God Bless...

And if you ever need to chat...Im here...

Michelle

1/28/09 3:52pm

Hi Friends,

Thank you for all your replies! I love this site. It helps to know that others are experiencing what I am going thru and that I am not alone.  I am on the 8th week of methotrexate and had to continue on 20 mg of prednizone because the inflamation returned along with the pain. I am starting 10 mg of predinzone this week and I am starting to see a new rheumy since I just got Kaiser and now have insurance!  Thank you God! I am still on my vegan diet and experience less flare up's. I miss eating meat and still have it once in a while but suffer the consequences when I do.  I have noticed though that when I eat meat or dairy and acid fruits like lemons oranges, strawberries and spicy foods my joints ache even more.  I am learning alot about nutrition and have joined a wellness group to make sure that I'm doing all I can on my end to not eat foods that are causing the flare up's. As a result I look really good! Hair is shiny and I lost alot of the fat off my body I look slim!  Wish I would have changed my nutrional ways sooner and maybe spared myself this pain.  Here is the website if any of you are interested in it. http://drmcdougall.com/star.html. Has testimonials of folks that had RA and other diseases and it was reversed by going on a vegan diet.  I miss wearing heels!  I recently purchased some sketchers and they are ok but I look forward to the day where I can have sexy feet again. Meanwhile my feet are inflamed and it hurts the ball of my feet to wear a 1 inch heel. My prayer is for God to heal me everyday I pray  " By your stripes I am healed Lord! ".  I also know that if I don't get healed that God uses me somehow to make this all good. Because he promises us that he only has good plans for us and I am holding him to it. He has been so faithful to me before getting thru a divorce, etc. that I know he is there for me walking with me thru this!  Peace and Blessings!

Rita

 

1/28/09 4:26pm

Hello Rita...yes I know about Dr..Mcdougal..Me and my mom went to one of his programs...HE has a 6to 7day program were you stay with them and they teach you how to eat and how to make the food...It was pretty nice..But really hard when all you do is eat meat ,or dairy..OMG...It beat me up...Although I did lose 4 pds overnight..Never had I seen that happen before..It really does work..

I hope you are feeling better..Im actually going through a flare up these last couple of weeks..And Geez..ITs been horrible..

My husband was working good hrs..and now they have him at 8hrs a day..Although I do have to thank God for at least having a job..There are so many poor people losing there jobs right now..I dont want to sound..Selfish..But its really put a strain on us..Im looking for a job now..Something I had never had to do..Especially right now its not a good time because of the way Ive been feeling...But I have to help him..He tells me that I dont have to ..But I know he needs my help...

But anyways...I hope all is well with you...

If u ever need anyone to talk..I m here..

Hugs..Michelle

1/28/09 4:30pm

And your Right...By his stripes we are healed..Its funny because Ive been praying the same prayer...LEt his will be done..So this could all be for his GLORY!!Innocent

1/28/09 6:55pm

Hi Michelle,

Wow!  That's awesome that you attended Dr. McDougalls program. I have his books and also I checked out the China study which shows that animal protein diets cause cancer and cause havoc in our bodies for diseases. especially dairy. When the rats on the study where given a plant based diet the cancer was reversed! I had not realized all that so it has been a real eye opener for me.  I can't go back to putting my head in the sand.  I agree it would be hard to go to no meat. I was easier for me to give up meat, because Last year I did a 21 day Daniel fast (3 day liquid and rest vegan) in the beginning of the year. So it was easier because I felt so good eating more vegetarian meals during the week.  The fast was to to help me grow closer to the Lord and for me to hear, see and be obedient to what his plans are for me. By August I got a job that I just love and by year end my house situation was resolved he is so faithful.  During my storms he gave me peace and carried me. Bible says, "However, this kind does not go out except by prayer and fasting." .  When there is a crisis fast. When you are afraid fast.  Fasting is waiting on the Lord.  I just finished this years fast and I am excited about the new year.  I plan to continue to fast once a month so I can keep sensitive to the Holy spirit.   "But those who wait on the LORD Shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint."  Isaiah 40:31 I will keep you in my prayers over finding a job and may God bless you and give you peace. Rita 

1/28/09 9:13pm

AMen!!.. I really needed that today..I to went on a fast..I watch TBN..so there Jenzten Franklin had a 21 day fast.. And I did join the first of the year..Gosh you gave me so much inspiration..Really you did..I needed that Word today!! I to plan to fast once a month..I have so much faith in MY LORD..He to has always been faithful to me..When I was pregnant with my oldest son ..Who is now 14...I was having so many complications..And the Dr..Told me that there was no hope..THat I had Miscarried...But I had a sister from our church proficied to me that he would live...So I believed in My lord..And I went to get a second opinion..And here he is 14yrs later...Alive and well..We have him in a Christian High School..Because I know theres a calling in his life...My god is an Awesome God...I have faith...THat there will be something or my husband will get all his hours back....U know ..I literally got some oil..And I annointed his company truck..his uniforms..you know for blessing and so my husband would not get laid off like so many others...

The Mcdougall program is in Santa Rosa California... It was about 3000 ...not to bad...But its very educational...So many things that we dont realize about the foods that we eat..

 

THanks  RIta..

For your incouragement...U made me smile..

1/29/09 12:10pm

Hi Michelle,

WOW!  This is all so exciting!  While I'm a member of a local church, I go to Pastor Jentzen's Free Chapel in OC once a month when I need that extra annointing of the holy spirit or when I need healing or want to worship and praise God for the blessings I have received. There is power in being with a group of people that want to do the same.Surrender our lives to God and know that it's not all up to us. God helps us to carry the burden and we know that he is in control and frees us.  That's the fast that I joined too!  Jentezen Franklin is awesome!  He is such a passionate speaker and bible study teacher. He really stretches me to grow and believe in God's mighty power!  Have you checked out his website? He has awesome encouraging podcasts to download and listen to.  I love the annointing that you did! I will keep that in mind.  I recall pastor saying that when we go to battle we can pray but it's like taking a switchblade, by including fasting we take the sword of the spirit that is Sharpened with Gods holy word.  We sacrifice our flesh and obtain more self control. We take our tummies off the throne and put God in the throne. We get closer to God and we can hear him more clearly and we can see what he wants for us and then we have to be obedient to his will for us. It's this time that guides us and gives us clearer direction on what and how he wants us to do things.  During the fast I received so many blessings and God showed me so many things.  I plan to fast the first business day of each month.  Maybe we could fast together and pray for our healing and share each others purpose in fasting?  I feel that this is all part of God's divine appointment!  Thank you for being a blessing to me and for your words of encouragement! Rita

1/29/09 6:32pm

Hi Rita...

Gosh this is awesome..I live in Bakersfield Ca..And have been telling my husband that we need to go to Jentzen Franklins church..I bet it is so awesome..HE is a powerful preacher...His teachings my gosh the just have me glued to the TV...Im going to make it an effort to get down there...Its about 2 to 3hr drive but jeez one drives up there to the beach or what not..Why not to listen to the word of God...Yes I would love to pray and fast with you ...The bible says if 2 or more Gather and pray he is There... I really do believe it is Divine appointment for us to have met ..what are the odds?..

 

Im sure were going to have more things in commen as we get to know eachother...Well Rita we have power in his name and I know we will be healed To God be the GLory!!

Ill talk to u soon...

Michelle

1/30/09 2:30pm

Hi Michelle,

Yeah!  I agree! This is truly amazing. Let me know when you decide to see Jentzen and I can meet you there.  They have a 4 and a 6 p.m. service on Sundays.  I am in Ontario about 45 min away.  I am planning to fast this coming Monday, Feb 2. I want to receive healing and break any barriers that are preventing me from receiving his touch and also guidance and direction with my finances.  Let me know how I can pray for you during the fast.  Thank you Michelle!

2/ 4/09 7:33pm

Hello RIta...

Im sorry I have'nt responded to you..I have'nt been feeling so well..BUT i HAve some exciting news for you...

I had told you about the whole job thing...Well heres the great news..I had this interview at a couple places..But this one Dr. office was just exactly what I was looking for...Close to my house ..good pay..perfect hours...Well We interviewed I came home and the next day she calls me to tell me that she hired someone else...Well I was crushed because I really needed and wanted this one job..Well I send her a thank you letter for interviewing me and THat I hope all goes well with the new hire..BUt to please if she ever has another opening that I would love to work with her team...I dont know why ..I was lead to do this...Never in my whole life have i done something like this...Well today..at noon she calls me and tells me that..THe new Hire is not working out and if I would still be interested in the position...I was so happy..THis is such a blessing..

I have done nothing but THank God all day...

Well I hope your doing good..I just wanted to share my blessing...And thank you for praying for me..Your in my prayers also...

HUGSLaughing.......Michelle

2/ 5/09 12:34pm

Hi Michelle, Praise God!  That is such great news!  I am so happy for you.  God is so good!  He is taking care of you and only has great plans for you! 

 

I saw a new Rheumy at Kaiser on Monday he says my body is taking well to the 2 months of Methotrexate. Since that is going well, he put me on Sulfazine since it's less intense on my body in the long run it will do less damage. I agree eventhough I'm feeling better.  looking forward to the adjustment period. I'm also still taking prednizone 10 mg. But he knows best at this point.  I read the MYRACentral article on vegetarian diet has no effect on RA. Did you read it?  So I had some pasta, fish tacos and salsa the last couple of days and I feel joint ache all over. So I'm back to my vegan regime with no tomatoes and spicey foods.  I truly feel it makes a difference. I sent the article to my friend who is a nutrionist and she passed it on to Dr.Popper who is an advocate of the McDougall Diet, etc. and she wrote back saying that it's vague to know what the vegetarian people ate like mac and cheese would definetly not be healthy, etc. Anyways, she also stated that her patients that she treats with RA have All been very sensitive to gluten which is in wheat, barley and rye.  So I need to check that out: take out wheat for a week and then put it back and see what happens.  I read more about gluten allergies online and it mentioned that it can cause Hashimoto's disease which is hypothyroidsm which is what I have had for about 17 years!  I feel like I may have found the culprit. I hate giving up wheat but I do not want to be disabled in the long run.  I'm 49 and there is so much that I want to do for the Lord. I'm organizing a womens fellowship monthly meeting starting in March. It's answered prayer.  The Lord says to prepare the fields and not be complacent. We are only here for a short time and I want be his hands and feet.   May God bless your day!  Rita        

2/ 5/09 6:22pm

YEs Rita thats the way I feel...Like our lord has nothing but great plans for us...It crazy because it had been 2 weeks that I interviewed with her..BUt I just felt something with  this purticular place...I mean even while I was interviewing her fax machine kept on going and going..So she shows me all the Resumes that were faxed to her...THere was a pile..Another thing..In her news paper add she only wanted experienced people to apply..But I applied anyway..she called me in the next day to interview..But back to the pile of Resumes..I was praying inside that she notice something in me thats different than all the others..Well she interviewed me with her Right hand Assistant...So it was all three of us ...Well at the end of the Interview...Her Right ..tells me..You have such beautiful eyes..I know..Your good for this position..And I was In AWW!..I was like Lord I know theres something for me here..I just felt so good..

you know..With this Illness ..Sometimes I have no motivation..I mean  Im really tired..well You know exactly what I mean...But I felt different there...ITs amazing how God lays out everything out for us...Just perfect!! My GOD IS GREAT!!..

You know I  do know that...Tomatoes..Milk..cheese..Bell peppers..all have something in it that gives a person flare ups...And I have Read about The Gluten..so many people just dont know..THen were always mislead..Because our DRS...Dont believe in that stuff and want us taking medicine...But THe mcdougall diet does help....

Well Rita you have a blessed DAY..

Take Care..

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By Rita— Last Modified: 12/17/10, First Published: 12/11/08