Over night life change: In 1990 my husband and I worked... - NRAS

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Over night life change

Valdun profile image
16 Replies

In 1990 my husband and I worked out at the Gym as we did 3 nights a week, then we went to Shoneys and ate from their salad bar! The next morning around 4:am, I woke up with excruciating pain in my right hand a wrist! I was office manager for a medical billing office! I went to work and called my Dr. got right in and to my surprise he ordered lab work instead of xrays! I thought I had probably hurt it at the gym! He prescribed a steroid zpack and pain meds! The next day I got the call to see a rheumatologist! I had tested positive for RA! I did not have any clue that RA was something that would not go away! At first I was ordered all kinds of meds and they did not get My RA under control. I eventually had to quit my job due to the pain and inability to pull it all together! Then came the biologics! Paired with methotrexate My RA symptoms got better! I started with Enbrel and 8 tabs of methotrexate! This made me neuseated and weak! I really thought I was doing pretty good until my son took a video of me! I looked and sounded intoxicated! How humiliating! When we showed this to my Rheumatologist, he changed the biologics to different ones. Orencia, humira, and down the line! Finally I went back to enbrel as it seemed to work the best! By my doctors advice I found that by taking the injection and 3 tabs methotrexate the first night, then taking the next 3 methotrexate the next morning and the final 2 that night, I would be sick for 2 days of my week but my RA was better, Flare ups never stopped but were less frequent! As I realized that I would need pain medication for the rest of my life, I went to see a psychiatrist! I ask how to avoid becoming an addict and he recommended a rotation system! Start with the amount of narcotic that seemed to help and change the compound every three months! Say hydrocodone to lortab etc! And never go up on the narcotic itself! Well I still have RA, I now realize that I will never be pain free, but I can control it with the same strength of narcotic! I also realize that I will be sick for two days a week due to the RA meds, so I have just resigned myself to the realization that I will spend the better part of 2 days a week pretty much in bed with my trusty electric blanket! This is my new reality! I also have realized that I don't have to miss all of life's best moments! If I have a special event coming up I will add a day or two to my medication cycle and be able to do pretty much what I want when the occasion comes up! It has taken me many years, but I have learned that I can control a lot of it! Don't ever be afraid to be honest with your Doctor, he has seen it all! My husband now understands that this is the only way I can have any kind of life, and he supports me in the way I have chosen to live it! No one who has not lived with RA cannot understand that I do not choose to spend 2 days a week in bed because I am lazy! I simply do not choose to injure my self more by having a fall when I am so sick with the side effects of my meds and really mess my life up! I also realize that I will probably never be cured, and many things that I enjoyed or did in the past are no longer possible! I feel I am a survivor to have reclaimed as much of my life as possible! I am fortunate that my son was in college by the time this disease reared its ugly head, so childcare was not an issue! I do not keep my home as spotless as I would like, but my husband has learned to share household chores! And I am not bored to death because I have educated my friends and family and they also work around my schedule! I also try to stay involved with some charity events which helps me with my sense of worthiness! I hope this story can help someone else! I was dragged into this disease without any choice! And so are you! Weigh the risks of if new meds with your need to control this disease! It is scary, I know! But you and your doctors ultimately have to make these choices! Just be alert and listen to your loved ones if they tell you something is not good! Chances are that it is not! Ergo, the video tape! I cannot stop taking my meds but I can listen to others as to how best to take them and hear them when they say "go to bed"! Let's just all pray for a cure and until there is put yourself at the top of the list! Good Luck!

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Valdun profile image
Valdun
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16 Replies
sylvi profile image
sylvi

What a positive story it is hard work being us isn't it,but we all do our best to work round our illness.xxxxx

Gnarli profile image
Gnarli

Thank you so much for your uplifting post. I'm so sorry you have to live with this but, strewth, you've certainly got your attitude and thoughts well sorted. Wishing you all the best

Jan

stbernhard profile image
stbernhard

Well done, you have an excellent attitude and good people around you. You have taken control and are managing your condition. I was one of the lucky ones who never had to put up with debilitating side effects, so I count my blessings. All the very best and keep going.

Valdun profile image
Valdun in reply to stbernhard

Thanks for your thoughts, happy for you, not having the side effects. You are one of the lucky ones. Which of the biologics are you taking. Want to see if it is one I haven't tried?

stbernhard profile image
stbernhard in reply to Valdun

I have been on MTX and Sulfasalazine from 2010 and on CIMZIA since 2012. I have come off Sulfasalazine two months ago after gradually reducing it. MTX caused severe nausea in tablet from, but with the Metoject that was greatly reduced. I am in remission since 2015. Yes, I am a lucky one. I might well have had side effects, they just were never more severe than the pain etc without medication, so I just didn't pay any attention to them. Once again, all the very best. I hope you find something that will work for you without having to be on down-time two days a week.

Valdun profile image
Valdun in reply to stbernhard

Thanks, me too, for everyone's sake

Strayleaves profile image
Strayleaves

Thank you ,

💐💐

That has helped me a little , putting things into perspective.....

Take care.

Valdun profile image
Valdun

Thanks

First class post and interesting content. Thank you Valdun.

Valdun profile image
Valdun in reply to

Thank you, it took a long time to get here

AgedCrone profile image
AgedCrone

What a refreshing post.......we've got RA for goodness sake ....not The Plague.

I really admire the way you have kept in charge of your life so that this wretched disease doesn't ruin your future or that if your loved ones.

I think when we are first diagnosed we need to be very intent on looking after ourselves & not try to ignore what we need to do to have the best quality of life we can possibly have. It really is up to us to take charge of ourselves as you have.

There must be a wonder drug just around the corner that will help without the 'cure' being worse than the disease......so we can just hope that things get better ....for all of us.

Hope thing continue well for you Valdun!

AC

Valdun profile image
Valdun in reply to AgedCrone

Believe me I was a wreck when this first began, I think that the first mistake I made was lying to myself, and I guess everyone around me! I could not believe what had just happened to me! I had many of horrible days pretending that it was a bad joke! I did not even tell my boss because I was in denial! I just kept thinking I would wake up one morning and it would be gone! I really believed that if I just kept plugging away I would wake up and things would be back to normal! Failing that way not only hurt me but the people around me! My boss decided to close our office and go to a billing agency because I was not producing as I had in the past! That was a major blow! I was staying at the office later and later, just trying! I virtually was fired, I think! I was spinning my wheels but did not tell anyone, with the exception of my immediate family! I really was my own worse enemy! It was in the process of closing our office, that he found out! I needed to sign some papers at his attorneys office during the closure and I realized that I could not hold the pen! He was so shocked and as we walked out of her office, he told me that I looked at him as if in shock, he had no clue! That was when I told him that I had been diagnosed with RA! He then looked at me in shock, then he hugged me! My boss was the first born in India, the oldest of 11 children and his whole family sacrificed to send him to the United States for college, and Med school. he in turn virtually paid for the next son, he too migrated to the US to go to school! Then it kept trickling down with all the brothers becoming Doctors in the US. His sister was married off at the age of 16, there was no future for her! He expected excellence from every body, and accepted nothing less! One of the best compliments of my career was when were at joint meeting for radiologist and their office managers! After he attended all the classes to get his CUE hours he left before the training was over! As I was saying by to him a colleague of his ask him if he didn't think he should stay for the Medicare and Medicaid classes, he simply said I don't have to she knows what she is doing and will tell me anything I need to know! That ment way more to me than the profit sharing account that he gave me as a benefit. That account helped so much with my medical bills, still does! I don't touch the principle, just the earnings! I do not know if he would have changed to the billing agency if I had said something before, and maybe could have saved my employees jobs! The point was, I don't remember him ever even touching even my hand in all the time I worked for him! He was very formal, but after I told him he could not quit hugging me! I think that was due to his heritage, he thought it would be improper to ever touch me! I really thought I would get well! I am never surprised when people say they thought it would go away, because I did too! My acceptance that it was not going away was probably the best thing that happened to me! Until then I mourned my loss but kept thinking that I would wake up one morning and it would be gone! But, when my job went away, I kept asking my Rheumatologist what we could do next. That was when he broke the news to me that he would keep trying with the meds and try to manage some of the symptoms, but I would still have RA! Talk about a bummer! If we had a heart attack, or cancer, knock on wood, we would know that sometimes people get over it and lead healthy, happy and productive lives! All of us started out thinking that when the "stupid" doctor figured what medicine we needed we would go back to normal! The sad truth is we will always have RA, we might get control of it but it is still there! When I found out that fact, I was shocked, and depressed! But after my pity party stopped, only then did I realize I had to do anything possible to insure that the rest of my life had to include the fact that even though I had an incurable disease, I was not dead or paralyzed or anything that drastic, did I begin to pick up the prices and start a new world for myself! I am not happy it turned out this way but it is the only choice I had! Told you that I talk too much!

Valdun profile image
Valdun

Did anyone her live through the Texas hurricane? I live in north Florida, and so far am in the path of this new hurricane! I also live in the country within walking distance to the Suwannee River! So there is a good possibility I may be without power for a while! I am telling you this because I may be out of contact fo a while, my home is wired for a generator that we never bought, and there is not one to be had anywhere now! In fact I went to town today to stock up on water and food, and the shelves are empty! There was no water, not even a can of soup or saltines, etc! Thank care my pantry is not bare! We do have a prophane burner, so if the power does go out I can do a one potter! I will read every thing posted here when this is all over! Lucky me, I live within 3 miles of the highest elevation in the State! Hopefully, I won't have flooding, wind damage maybe! Please Keep me and all others in your thoughts and prayers. Does anyone else live in this hurricane's path? Let us all know so we can say a prayer for you!

AgedCrone profile image
AgedCrone

Will be thinking of you as Irma approaches. All my Florida friends around Tampa have evacuated........I pray you will all be safe.

AC

Valdun profile image
Valdun in reply to AgedCrone

Yes, I graduated from Tarpon Springs High School! Some of the best years of my life, we lived in Palm Harbor, Fl. I, as an adult, think back to those times with amazement! In 1970 I graduated from Tarpon Springs with honors! I was only 17! This was the year of the Atlanta Pot fest! I was so Stupid that I did not know what the age of Aquarius was! I thought that it was just a song! Then came the Atlanta pot fest! The southern equivalent of Woodstock! I still had no idea but if you graduated in 1970, you were supposed to! I moved out with my still best friend, just so I could be like all my friends! I was so naive that I was a joke among my peers! I remember the song, Three Dog Night, and their hit song "mama told me not to Come! Any where I went somebody would play it on the juke box! Yes I am old enough to remember the song, it did not occur to me until many years later that the lyrics described me to a T! I cannot ever look back on my life with regret, I was a part of something bigger than Me! November 26 I will be 65 years old! If you would have ask me then how I would feel today, the last thing I would have thought of was the relief that I will now be able to qualify fo a secondary insurance policy that I can afford! I never look back on my life with regret, and I am thrilled that I was a teenager during that day and age! I was probably one of a very few people that can say that I was a want to be hippy, and I still do not regret it! I may have been naive then, but I do not regret it! I think that I had the best of all worlds! If any of you grew up at that time, please chime in! As I evolve into old age, with a disease, then that means I was a survivor! If any one of you know this feeling, please chime in! I think that my generation, was one of the best in the world!

Neonkittie17 profile image
Neonkittie17

You have persevered and got the best you can for yourself. Well done for that. It takes courage and time and is hard work we get there .. Some sooner than others but again you are great for ensuring you have found the best you can to control your RA. x

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