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MicRoMediC
04-18-2009, 08:03 PM
My name's Samantha. I have had symptoms of lupus since the 7th grade, I am now 22. Two weeks ago I was diagnosed with lupus, (because I finally got in to see a rheumatologist). I was also diagnosed with the lupus anticoagulant antibody. I am now on Plaquenil and it's working great so far. I am a paramedic and love my job! Hopefully my disease won't progress so far that I can't work anymore. I had an incident a few years ago where my left eye went black midway down; they think it was a TIA, (mini-stroke). If I have another clot or 2 or more miscarriages then they will start me on blood thinners too. I have been a little down about all this news, but my boyfriend is SO attentive to everything that's going on and is very supportive. He's the best thing and is the only thing keeping me sane. My gallbladder was removed six weeks ago, could have been attributed to the disease but not sure. Anyway I just am looking for some support. I'm so glad there are things out there for us. Thank you.

TobyJug
04-19-2009, 01:35 AM
hey just wanted to welcome u to the forum and give u a heads up....

MicRoMediC
04-19-2009, 05:46 AM
Just wanted to say thanks. I'm a little scared and don't have much support other than my boyfriend. My parent's aren't involved at all. Anyway, talk at ya later.

mountaindreamer
04-19-2009, 10:13 AM
hi micromedic,

i certainly hope you are the responding paramedic for some of our members....some have had such embarrassing experiences, and are reluctant to call for help...congrats to you for your professional choice, i have the utmost respect for first responders.

thank goodness for your boyfriend....a good support team is so important with this disease....sorry about your parents uninvolvement, it can be so difficult for people to accept the severity of lupus especially when we look ok, but feel like crap.

so glad you are already getting good results from plaquenil....it takes up to six months for plaquenil to work the best that it is going to...you are off to a great start.

i know you are frightened....we have all been there, and this is what the members of this forum are here for. We have helped each other overcome the fears, and we help each other get past one phase and move on to the other.

i would suggest that , if possible, your boyfriend go with you to drs. appointments...it helps to have someone to take notes, and help you remember different symptoms. Lupus symptoms come and go, and it is sometimes difficult to remember all of them.

Also, lupus flares can be intensified by ultraviolet lighting from sun and fluorscent lighting. In your profession, you are probably in the sun a good bit of the time....you should start protecting yourself by wearing clothing that covers your body, and sun block (spf 55 is recommended). If you notice that fatigue sets in, a rash breaks out, or that pain intensifies, these could be the result of being in the sun.

so glad you found us and decided to join....please feel free to jump in anytime and join some of our threads. Let us know whenever you have any questions, we have some incredibly knowledgeable members who can answer questions from diet, sun protection, meds, lab results, etc. and we even have our share of incredibly funny comedians.

hope you are having a great day....we have several members from texas. They will all be along later.

MicRoMediC
04-19-2009, 10:27 AM
Thanks so much mountaindreamer. And yes, I have picked up people in their most vulnerable state, I don't mind, it's part of my job. I have picked up from naked people to people that just can't get out of bed due to an illness and feel so badly for calling us. I don't mind, again it's part of my job. I've been doing this since I was 17, I started as a volunteer firefighter and got into EMS and have loved it. I am planning on getting onto an air medical helicopter. I love working with sick kids, I worked at a children's hospital for a year and it was the absolute most rewarding thing I've ever done.
And yes, my boyfriend can't always make my appointments, but I love when he does because like you said, it's important for someone to be there for me. And my parents not being involved is something I'm used to now. It sucks sometimes because I want to just pick up the phone and call my mom and tell her something, but it seems like every time I do she ends up telling me I'm stupid for doing something or not doing something right, or the way she thinks I should have done it.
I am scared, like I said. I'm so glad this website is here and there are others out there for me. Some days I don't even feel like getting out of bed and other's I feel great. Picking up the stretcher and carrying our three 50lb bags really takes a toll on my 115lb, 5' body.
With the lupus anticoagulant antibody, this is what scares me most right now. I am at extremely high risk for strokes, heart attacks, and miscarriages. I really want kids and would love to carry my own but that might not be possible for me. If I have two or more miscarriages or have another clot, they're going to start me on blood thinners. Have I metioned I'm only 22?! Anyway I'm sorry I'm rambling on and on. Sometimes I just feel so lonely. The other day I just started crying for no reason on my boyfriend's shoulder. I know he understands but I feel so kid-like when I do stuff like that. I'm just a little blue lately. Anyway, have a great day. Today's a slow day for me, I just got off a 24 hour shift and we were up most of the night. Talk at ya later.
-MiCroMediC

mountaindreamer
04-19-2009, 10:39 AM
hi again,

you know, your lupus can go into remission. we have one member who's lupus has been in remission for 15 years now, and she has had 3 children during this time....so, there is hope.

Also, several have had children even while lupus was active. I am not familiar with the lupus coagulant, but there are a few incredibly knowledgeable members who i know will be along shortly and can ease some of your fears about this.

you might want to protect yourself from the sun, and see if it reduces some of your intermittent fatigue and pain.

get some rest, i know you have earned it....

Angel Oliver
04-19-2009, 02:36 PM
HI Micromedic,

Just to say welcome and all the members here are fantastic and so lovely and will help you all the way.Sending you gentle hugs.

love
Angel.xxxxxx

Ria0331
04-19-2009, 02:38 PM
Hi Samantha,

I'm Maria and would like to personally say welcome to our family. I have only been a member for about a month and I feel like this is a part of my extended family. We all go through similar things and can relate to one another better than most people cause when we talk to "outsiders" they will listen, but have no way of fully understanding how we feel cause they don't have Lupus. I'm sorry to hear that you have been having symptoms for so many years, but i'm very happy to hear that the Plaquenil is helping. Does the doc have u on any other meds? Its nice to have other people that work in the medical profession here. There are a few of us that work or have worked in the medical field here so you will have other people to relate to in that way as well. I'm on Short Term Disability through my work but I do work in the medical field but doing data entry and i'm going to get my Pharmacy tech license and if i can ever go back to work then I will try to work in the pharmacy and eventually work in a hospital. I love working with people and my biggest passion is helping people. I hope u find this family to be loving and supportive. We strive to help eachother out as much as possible.

BadFlareDay
04-19-2009, 03:11 PM
Hi There, welcome to the site. I don't post often but I am very active in reading the wealth of knowledge available here.

wrightrs
04-19-2009, 03:28 PM
Hi just wanted to welcome you here. I have been though a lot of the things you have. I'm glad your getting relief from your meds. You'll will gets so much support here. Everybody here was gone through so many things. They will give you answers and tips. They will make you Laugh,cry. or laugh til you cry.

MicRoMediC
04-19-2009, 03:52 PM
Thanks from everyone, you truly don't know what this means.

I have been experiencing the symptoms for, I guess, 10 years now but it gets worse in cycles, about every three years or so I have major outbreaks of rashes and hives and extreme pain with no relief from any anti-histamines or pain relievers. Of course on a daily basis I have the pain and fatigue. Like I said my gallbladder came out 6 weeks ago and that could have been attributed to lupus. Anyway I'll stop rambling for today. I'm working on a scrapbook for my paramedic academy class! YAY!

Looking forward to many years of support from y'all!

dsunshine
04-19-2009, 04:28 PM
Hello Samantha and Welcome!
You have come to the right place to get support and love! Please don't be scared about anything in life. I know th unknowing can be scary but with God all things are possible! You will carry and have your own children but you have to believe this for yourself....claim victory for yourself. I was in so much pain when I was first diagnosed that I only wanted to be out of pain. Now that my pain is gone all I want is to go into remission and be healthy and I last week I started working out at the gym to move towards that goal. Baby steps towards what you want. Keep your head up and keep being positive as anything is possible for you!
Welcome again!

AyahsClan
04-19-2009, 05:09 PM
Hi Samantha!

Glad you found us. You are a fascinating young woman, we are blessed to get to know you. Sorry for what you are going through but as others have stated, you are not alone. This forum has become my lifeline to sanity in living with lupus.

Saysusie
04-19-2009, 09:18 PM
Hello Samanthaa;
I am Saysusie, Moderator/Administrator here at WHL. I am so glad that you found us and that you've already seen how helpful and kind our members are.
You've been given some excellent advice and support. I just wanted to add my welcome to those you've already received! Glad that you are here:laugh:

Peace and Blessings
Namaste
Saysusie

Rastagirl
04-20-2009, 10:24 PM
Hello Samantha... :wavey:

Just wanted to add my welcome to the bunch! Sending you a gentle, understanding HUG... :hug: ...because I care.

Man, you've really been through it. What a tough time you've had. There is such a full range of emotions that come after that diagnosis...I remember it well. Your head must be swimming with everything from questions about what to expect, to your own upheaval of emotions. I remember going through the many stages of denial, anger, grief, deep sadness, and feeling all alone. I saw you mention that you just broke down crying and couldn't explain why to your boyfriend. Please know that it is completely normal to do this. You've been given a lifechanging diagnosis and it's normal to feel scared and overwhelmed and have it come bubbling to the surface as tears out of nowhere. Plus, you're still recovering from surgery and that takes an extra toll on your body and emotions. I say, allow yourself to have those feelings, the emotional crying....and tell your boyfriend (who sounds very understanding and caring) that he doesn't have to try to help you stop crying or lift your spirits right at that moment, you just need him to hold you and give you his strength. Many times, that was all I needed at any given moment from my husband. I'd tell him that sometimes I'd just feel weak and scared and frustrated, and all I needed was to feel his arms around me and feel some of his strength make it's way to my body. That's some of the stuff that has gotten me through the worst of my 27 years with Lupus.

I also wanted to give you some hope for the future. I was diagnosed at age 18, right out of high school. I had doctors tell me I should probably never try to have children. I was absolutely devastated! I cried for days. But with the help of my supportive husband, and a fantastic team of doctors over the years, I have been blessed with 2 miracles....my son, who is 16 now, and my daughter, who is 12....13 in a few weeks (she's been waiting forever, according to her, to be a teenager, so I added that for her.) :veryhappy:

Never stop hoping for a miracle! I thought I would never have children, especially after having a miscarriage. We honestly do not know what our futures hold...sometimes absolutely wonderful things happen. I've been in a lasting remission now for about 15 years.

Remember, it's important that you do everything you can to take good care of yourself (you being in the medical field, I know you understand this), make sure you find the best doctors available to you, and keep educating yourself and arm yourself with knowledge about this disease. And of course, come here, we'll all be your friend and be there whenever you need someone to lean on.

Fondly,

Lori :heart:

froggal
04-21-2009, 12:24 AM
Hi Samantha and welcome!! Glad that you have decided to join. We dont care about rambling so please stop apologizing!! You will meet lots of awesome people here who just so happen to be smart! Hopefully, we will get to know you! Always a friend ~ Angie