Aa
Hope is a wonderful thing
Hi All
Just thought I post an update…5 ½ weeks into my treatment and I am feeling BETTER than I did when I was in my 20’s. I cannot believe the difference in the quality of my life and how wonderful I can actually feel. Once I started taking prednisone and Plaquenil, I hit the ground running.
I am looking forward to seeing my immunologist at the CC on Sept 5th to discuss this transformation with him. And it will be so exciting to be able to walk into a doctor’s office and tell him that I am feeling wonderful and the treatment is WORKING. The days of shrugged shoulders are over for me!!!
Also, I wanted to go back to work, but due to my cog fog I was not ready to look for an accounting position, so I decided to step back into the “working” world by getting a part time job at Wally World (30-32 hrs. a week), to see if I could handle it. Well, I can and I have actually been enjoying it. I can feel my brain “waking up” and I am actually feeling more confident with my short-term memory, however, I still have trouble with numbers. I don’t know if that will ever come back but I feel that it may.
Those of you who know me know that I am a cyclist and it was my biggest fear that I would not be able to ride with the energy and joy that I once did. Well I am happy to say I am riding better than I ever have in my life!!! I am amazed at my progress.
Over the past month I have been through a few bumps in the road, but ya know, after having been in Limboland for so long I think I came out of it as stronger person. Two weeks ago I had a breast biopsy (microcalcifications cluster removed) that came back benign, and I did have to go under anesthesia, but that halted my cycling for only two days.
A few days before the surgery, after a long day of cycling, I broke out in a rash that eventually covered my entire body. Due to my health history and the crazy rash, I was given a Solu-Medrol IV (when I went in for my biopsy)…which for me was absolutely the BOMB!
This is the most remarkable part about the past 5 ½ weeks. I have been riding 20-50 miles a day, about 5 times per week. I am riding stronger, faster and more efficiently that I ever have ridden in my life. It was just this past June that sitting in the saddle was so painful on my joints and riding was soooo difficult. I was angry and frustrated. After a short ride, I was in pain. My muscles were just not there for me. I kept riding, hoping that I would get stronger, but it didn’t.
Now something has transformed within my system. I don’t know what it is, but my entire body works better than it ever has. I have so many questions for my immunologist! There are many changes in my body and many of those little things…parts of the puzzle…that so many doctors dismissed as “nothing”…have gone away!!!!
Here’s the funny part…last week I was out for an early morning ride before work and I was riding through a parking lot…turning around to head out to he country for the long leg of my ride…and a car and I collided. CRASH!!! I hit the front quarter panel of a small SUV, the side of my head/face hit the windshield and the next thing I know I was on the ground and people were around me. I was not completely knocked out, but I was in a complete daze. As I was laying there I wanted someone to tell me how bad the bike was…the car had run over it and I was more concerned about the bike damage!!! LMAO!!!
I was taken to the ER by ambulance, and by the time we got to into the ER I had a lot of chest pain. I was afraid something had pulled from my breast biopsy??? but I had hit the passenger side mirror and had cracked a rib. I had several xrays taken, given a shot of something wonderful for pain, given some crutches (my right knee was messed up) and sent home.
My poor husband…he has requested that I stay out of hospitals for awhile. He’s had enough!
In the ER, after I was given that wonderful pain shot, I was laughing hysterically and I kept saying, “I got hit by a car!! I got hit by a car!!” My husband looked at the nurse and said, “I’ll have some of what she’s having.” And I said, “NO! You have to be hit by a car. Somebody go get me car keys and I’ll RUN him over!”
I have healed very well from the accident, and being 48 years and 11 months old, after being hit by a car and bouncing back like I have, I am doing pretty dam* well!! I feel like the Bruce Willis character in the movie “Unbreakable.”
I want all the Limbolanders to know there is HOPE!!! I am proof that life can be better and that we have to keep pursuing answers. I KNEW something was wrong with me for years! Last summer was the point at which things were so out of hand that I had to find a real answer.
Now that I am doing so much better and feeling better than I ever have in my life I am a testament to why we must purse answers.
Public Service Announcement: I am also a testament to the need for wearing a bike helmet! Had I not had on my helmet, I would not be sitting here typing.
This forum is where I landed over a year ago, in desperation, trying to find answers. Had it not been for this little corner of the world, I don’t know what I would have done. Thanks to all of you who have given me support and extended your open arms in friendship. I hope I can continue to support and help...I'm not going anywhere...
My husband and children are seeing a side of me they have not seen in years and life in my house is finally back to normal…well as normal as it can be now that I am BACK!!!! My only regret it that my children missed their mom. Had I not decided that I had to find an answer to my health issues, they might not have ever seen their mom again. I cannot get those years back, but I can make the future better!!!!
I hope my story helps at least one person keep looking for those answers. DON’T GIVE UP HOPE!!!
(((HUGS)))
Wanna :o)
Just thought I post an update…5 ½ weeks into my treatment and I am feeling BETTER than I did when I was in my 20’s. I cannot believe the difference in the quality of my life and how wonderful I can actually feel. Once I started taking prednisone and Plaquenil, I hit the ground running.
I am looking forward to seeing my immunologist at the CC on Sept 5th to discuss this transformation with him. And it will be so exciting to be able to walk into a doctor’s office and tell him that I am feeling wonderful and the treatment is WORKING. The days of shrugged shoulders are over for me!!!
Also, I wanted to go back to work, but due to my cog fog I was not ready to look for an accounting position, so I decided to step back into the “working” world by getting a part time job at Wally World (30-32 hrs. a week), to see if I could handle it. Well, I can and I have actually been enjoying it. I can feel my brain “waking up” and I am actually feeling more confident with my short-term memory, however, I still have trouble with numbers. I don’t know if that will ever come back but I feel that it may.
Those of you who know me know that I am a cyclist and it was my biggest fear that I would not be able to ride with the energy and joy that I once did. Well I am happy to say I am riding better than I ever have in my life!!! I am amazed at my progress.
Over the past month I have been through a few bumps in the road, but ya know, after having been in Limboland for so long I think I came out of it as stronger person. Two weeks ago I had a breast biopsy (microcalcifications cluster removed) that came back benign, and I did have to go under anesthesia, but that halted my cycling for only two days.
A few days before the surgery, after a long day of cycling, I broke out in a rash that eventually covered my entire body. Due to my health history and the crazy rash, I was given a Solu-Medrol IV (when I went in for my biopsy)…which for me was absolutely the BOMB!
This is the most remarkable part about the past 5 ½ weeks. I have been riding 20-50 miles a day, about 5 times per week. I am riding stronger, faster and more efficiently that I ever have ridden in my life. It was just this past June that sitting in the saddle was so painful on my joints and riding was soooo difficult. I was angry and frustrated. After a short ride, I was in pain. My muscles were just not there for me. I kept riding, hoping that I would get stronger, but it didn’t.
Now something has transformed within my system. I don’t know what it is, but my entire body works better than it ever has. I have so many questions for my immunologist! There are many changes in my body and many of those little things…parts of the puzzle…that so many doctors dismissed as “nothing”…have gone away!!!!
Here’s the funny part…last week I was out for an early morning ride before work and I was riding through a parking lot…turning around to head out to he country for the long leg of my ride…and a car and I collided. CRASH!!! I hit the front quarter panel of a small SUV, the side of my head/face hit the windshield and the next thing I know I was on the ground and people were around me. I was not completely knocked out, but I was in a complete daze. As I was laying there I wanted someone to tell me how bad the bike was…the car had run over it and I was more concerned about the bike damage!!! LMAO!!!
I was taken to the ER by ambulance, and by the time we got to into the ER I had a lot of chest pain. I was afraid something had pulled from my breast biopsy??? but I had hit the passenger side mirror and had cracked a rib. I had several xrays taken, given a shot of something wonderful for pain, given some crutches (my right knee was messed up) and sent home.
My poor husband…he has requested that I stay out of hospitals for awhile. He’s had enough!
In the ER, after I was given that wonderful pain shot, I was laughing hysterically and I kept saying, “I got hit by a car!! I got hit by a car!!” My husband looked at the nurse and said, “I’ll have some of what she’s having.” And I said, “NO! You have to be hit by a car. Somebody go get me car keys and I’ll RUN him over!”
I have healed very well from the accident, and being 48 years and 11 months old, after being hit by a car and bouncing back like I have, I am doing pretty dam* well!! I feel like the Bruce Willis character in the movie “Unbreakable.”
I want all the Limbolanders to know there is HOPE!!! I am proof that life can be better and that we have to keep pursuing answers. I KNEW something was wrong with me for years! Last summer was the point at which things were so out of hand that I had to find a real answer.
Now that I am doing so much better and feeling better than I ever have in my life I am a testament to why we must purse answers.
Public Service Announcement: I am also a testament to the need for wearing a bike helmet! Had I not had on my helmet, I would not be sitting here typing.
This forum is where I landed over a year ago, in desperation, trying to find answers. Had it not been for this little corner of the world, I don’t know what I would have done. Thanks to all of you who have given me support and extended your open arms in friendship. I hope I can continue to support and help...I'm not going anywhere...
My husband and children are seeing a side of me they have not seen in years and life in my house is finally back to normal…well as normal as it can be now that I am BACK!!!! My only regret it that my children missed their mom. Had I not decided that I had to find an answer to my health issues, they might not have ever seen their mom again. I cannot get those years back, but I can make the future better!!!!
I hope my story helps at least one person keep looking for those answers. DON’T GIVE UP HOPE!!!
(((HUGS)))
Wanna :o)
I would love to put my journey into and out of limboland on the health pages, and once I see the immunologist on the 5th, put a "name" on it rather than just a connective tissue disorder....'cause everyone like to see a "name" for it and it would be more helpful...I will put something up there.
Because of how my system is working now, I have sooo many questions for the immunologist...so many problems started around 10 years ago and I need to talk to him about all these changes.
It was very difficult to my family to understand how I went from a do-it-all kinda mom to having zero energy. I have two boys...I was a soccer mom, PTA officer, room mom, cub scout den leader, runner/cyclist and I worked full time. My house was organized and spotless. I did everything! I did set the bar high, but that is how I am, so when I started to decline, it was hard to keep up with myself. Last year I just couldn't do do it any more and to be honest it scared my family. Once it was clear that I was truly "ill" and this was not in my head, they were supportive...but that took some doing for them to understand. If the doctor's cannot figure it out then there is nothing wrong with you, right?
It seems that it is easier to blame the person who is ill...it must be something they have done to bring this on, or it's all in their head. And the old, "Just keep busy," attitude that really angered me.
I have learned to discard those in my life who are not really a "healthy" influence. This might sound harsh, but if someone isn't truly supportive and a positive force in my life, why should I bother? I don't have time for negativity and anyone who is going to doubt me or even TRY to bring me down. Does that make sense? My focus had to be my family, me, and only those who really wanted the best for me.
Wow, this got philosophical...
Did that answer your question?
Well, I have to get ready for work!
Love ya Shelly,
Wanna :o)
Because of how my system is working now, I have sooo many questions for the immunologist...so many problems started around 10 years ago and I need to talk to him about all these changes.
It was very difficult to my family to understand how I went from a do-it-all kinda mom to having zero energy. I have two boys...I was a soccer mom, PTA officer, room mom, cub scout den leader, runner/cyclist and I worked full time. My house was organized and spotless. I did everything! I did set the bar high, but that is how I am, so when I started to decline, it was hard to keep up with myself. Last year I just couldn't do do it any more and to be honest it scared my family. Once it was clear that I was truly "ill" and this was not in my head, they were supportive...but that took some doing for them to understand. If the doctor's cannot figure it out then there is nothing wrong with you, right?
It seems that it is easier to blame the person who is ill...it must be something they have done to bring this on, or it's all in their head. And the old, "Just keep busy," attitude that really angered me.
I have learned to discard those in my life who are not really a "healthy" influence. This might sound harsh, but if someone isn't truly supportive and a positive force in my life, why should I bother? I don't have time for negativity and anyone who is going to doubt me or even TRY to bring me down. Does that make sense? My focus had to be my family, me, and only those who really wanted the best for me.
Wow, this got philosophical...
Did that answer your question?
Well, I have to get ready for work!
Love ya Shelly,
Wanna :o)
Like your hubby - I want some of what Wanna's having too! I knew you were feeling better, but better than ever, now that is inspirational. I often wonder to myself when I'm having good moments, if I only pushed harder, what would happen? This is nice to read more than once. When I'm feeling better I'm going to go a little farther than I think I can, just to test it out. Health Page testimonial? Can we huh, huh, can we put it up on their Wanna? Like Doni's most recent, I'd like to read it more than once and have it at my fingertips.
Wanna, if you don't mind me asking, you mention about how the family is feeling to have you back. Did they just pop back? Or, was it more transitional. For me, I've been here all along, but think there were and sometimes are many moments where they probably felt like they were on their own, or that I wasn't as dependable. If you are up to elaborating, I'd love to here.
Thank you so much for this.
Love,
Shelly
Wanna, if you don't mind me asking, you mention about how the family is feeling to have you back. Did they just pop back? Or, was it more transitional. For me, I've been here all along, but think there were and sometimes are many moments where they probably felt like they were on their own, or that I wasn't as dependable. If you are up to elaborating, I'd love to here.
Thank you so much for this.
Love,
Shelly
Thanks Sweetie! Hopefully you will find your answers soon as well!!
Helmet securely in place...
(((HUGS)))
Wanna :o)
Helmet securely in place...
(((HUGS)))
Wanna :o)
What great hope you give to us Limbo Landers!!!! I was so happy to hear how well you are doing. To think that you are doing so well now and back to doing things you love, what joy that brings to my heart for you.
Just make sure you keep wearing that helmet girl!!!!
Joyful Hugs to you
Moki
Just make sure you keep wearing that helmet girl!!!!
Joyful Hugs to you
Moki
Thanks for jogging my memory, now I remember reading your post about the lip biopsy! This is my next step to check for Sjogren's, that is after I get my fifth repeat brain MRI on Aug, 12th. All of the previous repeat scans have shown no change and no new lesions so far, but we will have to wait and see what this one shows. Either way it will be good to get Sjogren's ruled in or out for good!
I am so happy for you that you are feeling so much better and getting your life back! Your story gives me hope that one day this might be over for the rest of us still here in limbo! Keep us posted on your results and how you are doing, OK?
Hugs,
~Santana~
I am so happy for you that you are feeling so much better and getting your life back! Your story gives me hope that one day this might be over for the rest of us still here in limbo! Keep us posted on your results and how you are doing, OK?
Hugs,
~Santana~
Thanks for all your support through all of this, Heather.
Months ago I threw out years of old pocket calendars I had accumulated were I had kept my cycling mileage...I actually succumbed to thinking I would never ride like that again. It was a painful thing for me to do but I decided I had to move on. I don't want anyone to have to do that. I was soooo wrong.
Your post about staying open to possibilities is one that I feel it SO important for those in search of answers. The day I went to my neurologist and said, "If you cannot help me, please send me to someone who can" was the day I changed my life.
I came to this forum because I had symptoms of MS. I found help here that has changed my life. I have found friends here who have changed my life. And I will stay
here to helpfully change lives. Sometime it only takes a kind word and some support.
I'd love to pass this wellness on to you and everyone!!!
(((WELLNESS HUGS))))
Wanna :o)
Months ago I threw out years of old pocket calendars I had accumulated were I had kept my cycling mileage...I actually succumbed to thinking I would never ride like that again. It was a painful thing for me to do but I decided I had to move on. I don't want anyone to have to do that. I was soooo wrong.
Your post about staying open to possibilities is one that I feel it SO important for those in search of answers. The day I went to my neurologist and said, "If you cannot help me, please send me to someone who can" was the day I changed my life.
I came to this forum because I had symptoms of MS. I found help here that has changed my life. I have found friends here who have changed my life. And I will stay
here to helpfully change lives. Sometime it only takes a kind word and some support.
I'd love to pass this wellness on to you and everyone!!!
(((WELLNESS HUGS))))
Wanna :o)
Sweetheart....you story was exhilarating. I could feel the adrenalin rush while I was reading. I cannot ride a bike anymore due to balance and leg weakness, but for a moment reading your story, I could actually FEEL myself up on a bike. What an excellent writer and story teller you are. I am not kidding girlfriend, I FELT it. Thank you.
I had goosebumps reading about how well you are are feeling. You wanted to 'feel well' and by George....now you are. Dreams and prayers really do come true!
Please keep writing your wonderful stories of inspiration and hope. I could become quickly addicted.
I am so happy for you, dearheart.
Big Hugs,
Heather
I had goosebumps reading about how well you are are feeling. You wanted to 'feel well' and by George....now you are. Dreams and prayers really do come true!
Please keep writing your wonderful stories of inspiration and hope. I could become quickly addicted.
I am so happy for you, dearheart.
Big Hugs,
Heather
Doni...Thank you...I only wish I could get you out of your situation and on to a diagnosis and treatment!!! You are constantly in my prayers!! (((HUGS))) to you as always!!!
Wonko...Hopefully this will help those in limbo keep going. (Your post on taking steroids was very interesting to me by the way.) And about the helmet...it takes a certain personality to sport the bike wear from head to toe and helmet only adds to the "look"...I am proud of the attire and my NEW helmet which has a little more flair than my old one! Glad your dad is a smart guy!
Santana...When I see the immunologist on the 5th I am quite certain he will have a more composite diagnosis. He was looking at Sjogren's, vasculitis, or mixed connective tissue. The day I had the small salivary gland biopsy was when I was able I start treatment. Also, I will find out if I am able to absorb vit-D and what is happening with that. When I had the blood work before my breast biopsy it came back that I am now anemic so I'll have to take that blood work with me to show him.
The way I look at it... it's like having the flu; as long as the treatment is working I am not concerned with the exact type. I know it is important to know, but feeling better has been my goal. When I find out what it is I will definitely post it! Because I have responded to well to treatment, that will be used as a diagnostic tool as well...according to the surgeon who did my lip biopsy.
Wellness to all,
Wanna :o)
Wonko...Hopefully this will help those in limbo keep going. (Your post on taking steroids was very interesting to me by the way.) And about the helmet...it takes a certain personality to sport the bike wear from head to toe and helmet only adds to the "look"...I am proud of the attire and my NEW helmet which has a little more flair than my old one! Glad your dad is a smart guy!
Santana...When I see the immunologist on the 5th I am quite certain he will have a more composite diagnosis. He was looking at Sjogren's, vasculitis, or mixed connective tissue. The day I had the small salivary gland biopsy was when I was able I start treatment. Also, I will find out if I am able to absorb vit-D and what is happening with that. When I had the blood work before my breast biopsy it came back that I am now anemic so I'll have to take that blood work with me to show him.
The way I look at it... it's like having the flu; as long as the treatment is working I am not concerned with the exact type. I know it is important to know, but feeling better has been my goal. When I find out what it is I will definitely post it! Because I have responded to well to treatment, that will be used as a diagnostic tool as well...according to the surgeon who did my lip biopsy.
Wellness to all,
Wanna :o)
Thank you for sharing this update with us! What an amazing story, I am glad that people here care enough to return and give us updates. Speaking for us in L-land, it helps so much to hear the outcome of other people's stories.
Thank you for the PSA. I am always upset that so many adults and children don't use helmets. My father had an experience not unlike yours when I was young, and we are very glad he chose safety and common sense over style.
You wrote many wonderful and interesting things, and rather than dissecting the whole message further, please just accept my kudos, congratulations, and best wishes! Come back anytime to let us know how you are.
Thank you for the PSA. I am always upset that so many adults and children don't use helmets. My father had an experience not unlike yours when I was young, and we are very glad he chose safety and common sense over style.
You wrote many wonderful and interesting things, and rather than dissecting the whole message further, please just accept my kudos, congratulations, and best wishes! Come back anytime to let us know how you are.
My dearest friend, that was so beautiful, I can hardly see to type for my tears.
You are so important to me and as I have told you many times, your happiness warms my heart. I love that you have your life back, even better than before!!!
50 miles? On a bike? Heck, I can't even ride in a car that far and be able to walk.......ha.....ha....ha...... You are amazing!!!!
Sending you lots of love and hugs.
doni
ps: keep wearing that helmet and watch out for cars!!!!!!!!!!!!!!!!
You are so important to me and as I have told you many times, your happiness warms my heart. I love that you have your life back, even better than before!!!
50 miles? On a bike? Heck, I can't even ride in a car that far and be able to walk.......ha.....ha....ha...... You are amazing!!!!
Sending you lots of love and hugs.
doni
ps: keep wearing that helmet and watch out for cars!!!!!!!!!!!!!!!!
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
