Hello to everyone, I'm new here as well. I've been reading this forum for the last few weeks and decided to muster up the courage & officially join lol I'm not good at introducing myself, but from what I've read, I suppose this is how it goes!*
I'm twenty-five, married to my husband who I've been with a total of 11years. We have one beautiful son together who will be 4 in June. Currently I teach 7th grade although I have done many things along the years; from a veterinary technician, phlebotomist, medical lab assistant, lab technician, waitress, landscaper, accountant-the list goes on but you get the picture! Lol I've always loved life (although sometimes it felt as if it didn't care for me too much at times!) and have always had a desire to try everything. I first fell randomly ill when I was 16 and have been battling to find name for my illness for almost a decade. By sheer luck, when I'd just about lost all hope, an odd set of events occurred roughly a year ago. It began with my sixth miscarriage and a visit to a new ob/gyno that transitioned the mystery onto a path to an answer.*
Unlike any doctor-which has been near hundreds, even mayo clinic- he uncharacteristically sat down instantly with me and reviewed my very extensive history. The first suggestion out of his mouth was that I suffered from one, possibly more, autoimmune diseases. At first I wasn't sure what to make of it. It seemed so odd, mostly because it had never been brought up.
A few months passed and I found myself at the hands of another amazing doctor-again by chance. My pcp referred me to an Orthopedic leg surgeon for unknown reasons as to why my feet would turn purple & cold. I also had a severely swollen red leg-which later turned out to be my first blood clot. Instantly the doctor sat down and again reviewed with me my long medical history. He ordered tests, blood work, etc. not having to do with my leg, but an autoimmune disease. On my second visit he paged my pcp on the spot. He harassed their office for nearly two weeks until he took it upon himself to refer me to a rheumatologist.
At this point I had no idea what they did, I had never heard of one. When he told me they dealt with RA and other things I had my doubts. I thought arthritis was all the same. Something old people got or from an injury-like I had in my knee from an old basketball injury. Little did I know, I had a LOT to learn!
Finally after much procrastination I made the appointment with the nearest office to me, over 2hrs away. *My world was flipped upside down. She was/is my saving grace. The first few weeks I felt over whelmed, from so many tests, so much information, I felt mind raped. I had answers, but what did they mean? I had never even heard of lupus. I had never heard of raynauds, or how RA *works and all it's classes. I'd never heard of lupus nephritis or any word that began to name my suffering. But by God, the joy I felt. Finally it had a name! Having that meant hope. Having that meant answers, treatment, even incurable, it was most definitely SOMETHING! **
The first few months I felt in a state of shock. Years of suffering, of misdiagnosis, drs throwing their hands in the air telling me they were puzzled & they couldn't help me. Years of being looked down upon as if it were all some made up thing because ppl couldn't name what it was. This was the light at the end of that very long tunnel I never thought would end.*
I still have good and bad days. But my good are increasingly starting to out number the bad. I have found hope, support and the most important thing is, that I am NOT alone. People like on here and many other places such as this, *have shared stories that have struck a chord deep in my heart. to feel connected and touched, but yet at the same time determined. I have learned that I am mighty. That I have a voice. And that people like me and all the other's stories I have read, do not deserve to suffer in silence.*
Awareness and support networks like these should be known. Ten years without even knowing this disease existed, while it raged havoc is something that should never have happened. I am glad I found a place of acceptance, a place to share knowledge and stories. Another place to raise awareness of this disease and diseases like it.*
I know that's a lot! I'll try to keep from rambling in further posts lol*
But thank you to all for supporting the fight and giving people like me hope!
Welcome to WHL.
You were not ramling, your post is very well written and easy to read.
All of us understand, how it feels to finally get a diagnosis. It is hard to understand, for healthy people, we are not happy to have lupus, but we are relieved to have a diagnosis. It usually takes years to get the dx and for those years some people, including some doctors think that we are hypochondriacs. So when we finally know what is going on, we feel vindicated. Nobody can understand, what that feels like.
Are you on any meds?
I am looking forward to get to know you better.
I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).
Welcome to WHL. You are an excellent writer, and your introduction tells a very familiar story.
Back when I was first diagnosed with SLE in 2004, I too found a tremendous sense of relief upon finally having a name for all those strange and seemingly unrelated symptoms.
I often tell new members here, and the newly diagnosed, that my main goal is to have more good days than bad. I see that you have the same philosophy, and it's great to see. If we live our good days to the fullest, the memory of our most recent good day can be the mental fuel we need to get us through and endure the bad days. And knowing that there are still good times yet to be had, gives hope.
I'm glad you decided to join us and share your story. Please make yourself at home here.
PS-I absolutely love your statement that proclaims- "I have learned that I am mighty. That I have a voice."
I don't know why you think you're bad at introductions because you have actually brought me to tears. I am so sorry that you have had to go through all of this. I understand the absolute frustration of going to doctors who not only don't know what's going on, but don't seem to be invested in figuring it out either. I am recently diagnosed as well (Monday to be exact ha) and although it is going to take time to settle in that I have a chronic illness, as you are experiencing, I hope that for both of this.. this diagnosis brings us health. I am hoping that in 4-6 months I will start feeling better than I have in years because I finally have an answer to what's going on and therefore now I can treat it. I hope the same for you.
I think that it is a disservice that you have had so many miscarriages and no doctor ever suggested that you may have an autoimmune disorder. That's malpractice and actually makes me sick to my stomach. Do your current doctors think that they are related?
Among all of the anger and fear that I'm sure you are feeling (because I am as well) I hope that you see that there is a light at the end of the tunnel and that you may be able to feel better than you have in a very long time.
With all of my heart I wish you only the best.
Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
I am so sorry for what you have had to endure through the years. I hope you can get some relief now. I was diagnosed last month and know what you mean about good days and bad days! The people on here are so supportive and it helps so much to help people to turn to when you have a simple question. I hope you find it as helpful as I do! Welcome!
Like so many here I went many years suffering from different symptoms-seeing different doctors for different reasons and not one of them putting the clues together to determine that they were all related and I have lupus. In my case it was an eye, ear,nose and throat specialist who I went to seeking help for tinnitus that initially suspected lupus and ordered the blood work and got me referred to a ruhemy.
I think all profesions(teachers,military ,first responders etc.) have special people that excell in thier fields and take the extra steps to help. I was lucky to find one as it seems you were. Its sad that these amazing people are rare rather than the norm.
Just one question-Where the heck is limestone?
Welcome and very good to meet you.
hi baked tater,
your story is so similar to many of us.
i went over 30 years undiagnosed.
welcome to a group that cares.
i believe you will fit right in here.
Thank you all so much for all the welcomes! You truly made my day, you have no idea!*
Since I'm replying via mobile, it's a bit hard to reply in regards to each individual as the norm, but I wanted to stop and make sure I said thank you again, to all of you for such a warm welcome!*
Debbie: yes I'm on several meds. Plaquenil ( which has been a tremendous help, not only for symptoms & decreasing my flares but also has dramatically decreased my tremors and full body muscle spasms), prednisone, ultram, flexiril (rotated between the ultram), fish oil, iron, b12 injections, vitamin d, folic acid, lovenox, a few others I can't quite remember the names of off hand that are more recent & an immunosuppressant (starts with an m) but hopefully trying to switch to imuran (I think that's right) or a more pregnancy friendly version because we were encouraged to try to conceive now due to the combination of everything going on.*
Rob: thank you very much, your reply was very flattering. I most definitely believe in that philosophy. it has gotten me through a great deal of hardship. I have kept safe a few mental "happy places" in my mind when things go amiss. Hope is most definitely the greatest weapon to have and memories of the great times, fuels our determination.*
TheLWord: I am truly sorry as well for your suffering & frustration. Although frightening, knowledge is power, your just one step closer to hopefully managing what you've already been dealing with more efficiently. I most definitely understand the frustration from feeling doctors are uninvested into truly helping those who come to them seeking answers. But I also thank God for those rare few who treat us with dignity and approach us a real human beings and listen when the world won't.
**Thank you and yes, they think it's very involved in many ways. One reason I am now on lovenox prior to conception is because I tested positive on the Ana and have other things that make me susceptible to producing clots, which leads them to believe the partial reason for reoccurring miscarriages. When I was preg with my son everything kicked into hyper drive, I was mostly hospitalised my entire pregnancy-and is also when my renal issues first started. At first they assumed it was a form of leukaemia or blood disease. *I saw an Onocologist for most of my pregnancy. This is also part of the reason I spent four months at the mayo clinic. The other bigger portion was because, *while I was 6 months pregnant, I was having an episode of severe morning sickness. As my husband was helping me, we suddenly heard a loud "pop" immediate pain shot through my entire body, I could no longer move my arms or legs & my vision went black. Rushed to the er I started having "mini seizures" after a few days in the hospital, they couldn't figure out the cause. A neuro surgeon from here told us we couldn't have heard a "pop" and it was just "normal pregnancy pain". Little did we know that pop had been me fracturing my vertebrae in my lower back, along with two herniated disks & 3 bulging. My tests for the leukaemia and others came to a screeching *halt at mayo, when they reviewed my films from 8 months prior and preformed a more recent MRI. *They came to find that the smaller fractures had become entangled in my nerves and were beginning to sever them-they were surprised I hadn't had permanent paralysis of my lower body. My sister who at the time was 17 had just undergone the same surgery 3 days prior and had severe complications. Her tongue had somehow been trapped between her teeth causing severe bleeding, followed by an allergic reaction to the *anaesthesia which caused her airway to completely close off. She was in the icu touch & go, & in a coma when I had to make the*decision to have the surgery the next day or face the worse-one of the scariest days in my life. So I think amongst all that, the focus got diverted away from everything else.*
After all that garble about myself, I wish you the best as well. If life has taught me anything in my short existence, it's that we can do miraculous things & over come the seemingly impossible. We can have the determination & inner strength to *climb mountains and still ask what's next! But if you should stumble, the support of those like on here and anyone who has cared for you will be there to help you back up & encourage you on your journey towards health, happiness & longevity. It keeps the wolf at bay and in my opinion is the most powerful weapon one can have to fight with! Good luck on your journey and I hope to read more from you in the future!*
Nmac: I agree with you as well. it's a Shame most of can relate to those mass numbers who have lacked and have not encountered nearly as many, *who have excelled past accepted potentials or who have surpassed the level of educationally certified pride. *But I am glad to hear you had the opportunity in meeting one of those few and have found the answer we all seem to seek for so long.*
Lol! I get asked that quite a bit. It's actually a really Podunk sort of town between Chicago and Bloomington. We don't have a post office or a grocery store. But we do have one school k-8 and we just put up a water tower last fall! Lol
Steve: I'm so sorry it took 30 years for you to find an answer. I honestly couldn't imagine. But good for you to have kept searching! You have much more determination than I could ever fathom. Thank you, I hope I do!*
And to anyone I may have missed, thank you as well and I apologise if I made you feel left out, most certainly not my intentions. Everyones hospitality is greatly appreciated and endeared.*
I looked on the map and we are almost neighbors-I live in Frankfort (rt 30& rt 57) and Limestone appears to be just west of 57 close to Kankakee.
It takes me about 15 min to get to the kankakee state park to go fishing.
North of me is the vast suburbs-complete with all the shopping mall etc.- there are 4 home depots -and 6 walgreens in different directions within a 10 min drive of my house-But go south on lagrange road one mile and it is nothing but cornfields for hundreds of miles - except for little towns like limestone!
My youngest daughter is turning 16 this sunday and she needed 50 hrs documented driving time to get her license so we have been zig-zagging thru the countryside the last few months-every where from here to peotone to gardner, bradley and kankakee-so if you were ever run off the road by a minivan-please accept my appologies!
Take Care Niall