Oh Ginger...

I have a few Cousins who have Lupus. My Cousin shared with me how Ginger is great for the inflammatory and a bunch of other stuff. So she gave me a concoction, with pineapple, ginger and honey. I'm not to sure if I got the measurements right, but the day I drank it, lets just say it cleaned me out. I haven't been able to close and make a fists for weeks. I expected the tightness to be gone that day.
Went to sleep. When I woke up, the tightness in my hands was gone. I could actually close my hands. Don't get me wrong, I'm not completely healed. I still had tenderness in my shoulders and wrists.

But I will say this, I am a strong believer in that Ginger!

Finally a real appointment...

Sunday, I had to check into the ER in my county to get the ball rolling. My best friend had called my county hospital to find out, what exactly I needed to do. They told her to have me come on in, I wouldn't be refused, and wouldn't have to pay. ER Dr, took one look at my blood results and said more confidently, then the previous Dr, that I look like I have Lupus. He prescribed me a strong pain killer, Norco and said I needed to call to make an appointment with a family physician, that way they could refer me to a Rheumatoid Specialist.
Monday, morning, I called to get an appointment. The lady on the line said, "You can either come in today at 3:15 or the next available appointment is April 2." I told her, "well of course I will take today at 3:15!"
I got to my appointment on time and then waited for an hour an a half for them to call me in. By that time, I was in severe pain, nauseated, tired and stressed. I heard the nurse tell someone else, "the Dr is running behind", REALLY?!
They called me in and I wasn't looking forward to them taking my blood pressure, because my arms were in pain. Sure enough, that darn blood pressure machine tried to take it 3 times and at that point my put my head down and cried. The nurse said, "did you want me to try it lower on your arm?" I told her, "just do what ever you got to do."
Dr came in, and of course my blood pressure was extremely high, and he suggested we take it again at the end of the appointment. He asked, lots, of detailed questions. He touched all my joints, and muscles. I haven't been cared for by a Dr for a long time that I thought at first he was into me, the reality, he was doing a very thorough job. He said to take the Norco and up to 500mg naproxen daily. They took my blood pressure again, and it was still high and because it has been high the other times, he put me on blood pressure medicine. He then scheduled me for an xray. Which they took an xray of every single joint in my body, including, neck, lower back, hips, and pelvic.
I have scheduled, with the nurse, to check my blood pressure in 2 weeks. Also, to see the Dr in a month, he wants to keep an eye on my pain and blood pressure.

I have to say, having a Dr attend to me, kinda refreshed me and made me feel a tad better.

Siblings reactions...

Like I have previously mentioned, I have 3 Brothers and 1 Sister, my Sister is the only one who lives out of state.
When I first notified my siblings that I was not feeling well, I sent out a mass text that went something like this...
"Well the good news is, I don't have HIV or Strep. Today I was tested for Lupus and Rheumatoid Arthritis. I have been in pain for two weeks. Please don't call me, today, I'm physically and mentally tired, sorry. I should have results in two weeks or sooner. Love you."
(1) Brother, had text me everyday after that to check on me and to keep updated.
(2) Brother, I never heard from and when we finally did meet up, I could tell he hardly understood what I was going through and after that, he never contacted me about it.
(3) Brother, showed concern, responded every time I sent out a text, but didn't initiate.
Sister, well, I got in maybe a sentence about myself and then the rest of the conversation was about her. A few weeks later, she initiated some conversation.
I had read an article/blog about how different peoples reactions would be when I told them about Lupus, excuse me, in this case, "most likely" Lupus. It had said, to some it would be an extremely big deal and to others, not so much. They were right, I guess I was warned.
Example #2
When I told my Director, he responded with, "it will be alright, its just arthritis". Oh I was to exhausted to explain to him that he had been misinformed, but had some truth. When I told our office assistant  she was very concerned, and still is.
I think I felt the best, when I told my 2 best friends. We have known each other from high school and maybe longer. We actually cried "together". I didn't get the initial, "do's and don'ts". I felt like they heard my pain, my hurt. Not that no one else did, or maybe I didn't show it to them. I felt like they had the shoulder I could cry on, the hug to say, "its going to be ok".

YUP, I need drugs...

So lets see, I took Prednisone, Tuesday night and Wednesday night. Results, Wednesday and Thursday, I felt like I had no limitations. We got home, everyone was surprised that I beat them out of the car. Teasing me calling me flash. The reality, I was moving at a regular pace of a normal person. I was able to return to my regular routine, go home, change, cook din din, clean, laundry, sit and watch tv. I even stayed up till 10p. Of course my children whispered, loud enough for me to hear,"she's still awake". HA HA
No Prednisone on Thursday night, and I woke up with my shoulder joints hurting and stiff. I was glad my whole arms weren't stiff like before, but nevertheless, it was still hard to shower and get dressed. This brought me down a notch from my happy zone. Darn you "most likely Lupus", why do you have to remind me you are here! Before I left the house I grabbed the pill bottle and had to decide, suffer all day and save the pills for an important day or start to cut them up. I work in administration but sometimes they need my assistants to help with our participants, which may require lifting.  Today was that day, they asked me for help. Stupid me tried to use my bad shoulder side, nope, it wasn't happening. Tears came to my eyes. Darn you emotions, now I am going to have to explain myself to the person I was helping, or even worse, now I feel I have to say something to the Director. I contemplated all morning, about telling the Director, I even stood up a from my desk, thought about how to say it and took a deep breath...nope not happening. I have flew under the radar for over a month, maybe I can fly a little more.
Anyways, back to the Prednisone, I decided to take a half of one, since it was already broken in the bottle. Results, feeling a little better but still tender. I guess I should jot down the they are 20mg each. I'm scared for the day I have no more.

Reaching out...

I know a handful of people of Lupus, maybe slightly more. It was easy for me to think about talking to someone with Lupus who was not emotionally connected to me, so that narrowed it down to 2 people. A Friend that I have known since Jr. High and someone who just happens to be my Brothers babys Mama. My Jr. High Friend has lived with Lupus for about 16 years, and I believe Mama was diagnosed last year.
It felt good that I could speak to someone about what I was going through, and that they understood. I got a lot of advice and suggestions, but best of all I got hope.
A common thing I heard and read was that for severe pain Lupus patients are put on Prednisone. I remembered that I had some left over from a prescription I received when I had a polyp. I took one last night. Today I am feeling so normal, well more normal then I have in the last month. Except for some pain in my wrists, hands and fingers. I could finally stretch out my arms, I could reach above my head, without any stiffening. Boy, it feels good. However, I have only a limited supply, I will take it one more time tonight and then see how I do without it on the 3rd day. I'm not trying to play doctor, I just needed some relief until I can get to one. Without insurance, its hard to see a Rheumatoid Specialist.
I had to remind myself, that even though I felt good, I still was positive, and even though the pain went away, the Lupus didn't.

Second call...Dad....

You know I really didn't think it was going to be so tough to actually make the words come out of my mouth, "my test came back positive" and "doctor said, its MOST LIKELY, Lupus". I mean, yes I have pain and there are days I can not even button my own pants, but I haven't changed. In matter of fact I probably have been living with this for a very long time and its just now being verified. I'm not sickly or hospitalized....So why does professing it seem so difficult?!

Unfortunately my phone call to my Dad caught him at Home Depot. My Dad, a little opposite of my Mom, is of little words and thinks long before saying them. Not that my Mom doesn't think before speaking, I'm just saying...never mind. After I told him about the results, there is a bit of silence, which there always is before he says anything anyways. "Its probably best to get a second opinion" is what Dad says. Ok, at this point, I don't know why, but I am offended. Just as offended as I was when my Mom declares I do not have Lupus. I tell him, "well, its a blood test they do for a specific test, and a second opinion would be getting my same blood and taking the same lab test, that's why they want me to see the specialist, to determine exactly what it is, the Rheumatoid Specialist would be just that, a second opinion". He goes on to get my permission to talk to an Aunt about getting my Cousins number who's Daughter had passed away from Lupus, at a very young age. I tell him sure, but I am really not sure. I am afraid the word will spread within the family and it will get to someone that I should of told personally first. At this point, I'm tired, what ever will be will be. The last thing I remember my Dad telling me was something like this...You know, sometimes we have to go through something to appreciate the things we have in life....yup you guessed it, I was offended! After the phone call, I was thinking, Me? Unappreciated of what life has given me?! If anyone is following me on Instagram and is my friend on facebook, would know how much I appreciate life. I am hopeful, I am positive, yes I'm not perfect, I know there are two sides to a story, I am not judgemental, I believe in Karma, I know God has a plan for me and I trust it. Just maybe, just maybe, this doesn't mean me specifically, maybe it means that Others will learn to appreciate life through me...but I thought that was already happening...so why now this?

First phone call...Mom...

In my mind, I had gone over and over again, how I would confirm with my Parents and Siblings, if my test came back positive. The order in which I contacted them, came naturally to me, it would be who showed the most interest in me, knowing what I was going through, unfortunately this will not make make the ones who showed the least interest to happy. I am the oldest of 3 Brothers and 1 Sister. My Parents are divorced and remarried. My Sister and Mother live out of state and my Brothers and Dad live locally. Now if I really followed my own rules in my head I would of contacted my Brother first, but since we communicated through text and contacting my Mom would involve an actual phone call, well I called my Mom first. I wasn't at work yet and I could have a private conversation in my car, it would just be easier.
I told my Mom what the doctor said, and I was feeling pretty good about how I was handling myself. Considering I cry every time I am by myself. She on the other hand started to crack, and I could feel it. I don't know if these were the words she used, but this is what I heard...I won't believe that is what it is until the specialist say that is what it is, cause it could still be anything else, and I will pray hard until that day, that, that is not what it is. This is hard for me and I will tell you why...she then proceeded to go on a rant about someone she knows who was diagnosed with Lupus and looks horrible and has been in the hospital for a year now. I told her (again) there are different kinds of Lupus and it effects everyone differently.
After the conversation, I felt like a kid that fell off a brick wall that I had been walking on and my Mom said, then you shouldn't of been walking on there! I have never liked that, why can't we just comfort people, use different words to make a point, say things a certain way...why why why. What about me and my pain, my hurt, my life? So, I was pissed for about a minute, but what did I expect, maybe some comfort, but I knew my Moms personality already.
I now feel like I needed some support, and Hubby has been awesome, and my kids have been great listeners but I need to speak with people who know what I am going through. This has now been clear.

Results Day...

Hubby and I arrived at my appointment late of course. I don't know why I scheduled an appointment for 8am with a check in time of 7:45am, if we drop off our youngest at school and 7:45am and the doctors office is about 20 minutes away. ANYWAYS...wishful thinking I guess, that I could casually walk in late and be seen right away. 9am came around and the Lady at the desk called me over and said, cause I was late, others were seen at their regular appointment time and I could reschedule or wait to see if the 9:30 appointment showed up, if they didn't, then I would be seen then, she was nice about it. Um yeah I will wait. I thought, I didn't wait 2 weeks to reschedule, I will wait all day if I have to. 9:30am came around and she called a name 2 times and then called me up, "you will be seen next". Man she wasn't messing around, and I appreciated it.
Weighed in, blood pressure, blah blah blah, doctor comes in...

"You stated you have a family history of Lupus correct?"
"Yes"
"Well the test came back positive in areas the point to Lupus and I will say, MOST LIKELY, you have Lupus. But you need to see a Rheumatoid Specialist"
"There is nothing else you can do for me?"
"No and unfortunately, I do not have a specialist on staff here."

...it really didn't sound that cold, and he was really a good doctor and of course we talked about other stuff.

So I am now in limbo. Need to find a specialist. Need to apply for a program in my County that can help me pay, cause I have no insurance. This is going to be a long process...Still in pain.

I want to be myself again...

The weekend of February 8, 2013, it was cold and chilly. Little did I know it was the beginning of what I would feel for a month straight now. In the past, I've had aches and pain, headaches and migraines that never lasted more than 2 days and it was nothing that ibuprofen or naproxen couldn't fix. That weekend my whole body was sore, like if I had majorly worked out and I felt tired. I figured it was due to being out that Friday night in the rain and I just needed rest. As a week and a half went by it wasn't going away, I was feeling limited in motion, all my joints were in pain from my toes to my shoulders. I thought heavily about 2 things, 1, I don't have insurance and 2, lupus. Even though lupus is not inherited, it runs strongly in our family, crazy huh? I have considered it throughout the last 10 years, but because symptoms didn't persist I didn't think much of it. I just felt there was something to be concerned about now and partly due to me taking naproxen and it not working. Hubby heard of a clinic, so I looked into it, got an appointment, went in saw the doctor. He wanted to rule out 2 things first, HIV and Strep. Good news, it took less then 15 minutes and I don't have HIV or Strep. Bad news, he would now test for Rheumatoid Arthritis and Lupus, the bonus, it will be 2 weeks for the results. In the meantime, he gave me a pain pill. The pain does not completely go away with the pain pill and naproxen, it just eases it. I also only take them at night. During the day I was nauseous, sleepy and emotional, there was no way I could function during the day like that, especially at work. Over the last 2 weeks, I have felt new symptoms. Although my legs no longer bother me during the day, at night I wake up to the agonizing pain in my knees, at least 3 times, I have to re-position myself, which is no easy task, with my shoulders, arms and hands in ache and no strength. Now not only my joints ache in my arms but the muscles also, they are sore like if I have lifted weights. My hands/fingers, are tight and hurt to stretch or make fists, they have no strength, not even to lift a pillow. To type is no easy task either, it hurts. I can not bend my writs, forward or backwards. It feels like I have a stiff neck everyday, a knot in my upper back and a sore lower back. Being in pain has been exhausting, the other night I went to sleep at 7:30, I just could not keep my eyes open. On the weekend I just want to lay down. I feel bad for my family. They didn't sign up for this wife and mom. They have been understanding and helpful. I'm just scared that one day Hubby will throw his hands up and say, I can't do this anymore. I'm scared I am going to live like this for the rest of my life. I haven't had one day that I have felt like my normal self. Finally in 3 days I will see the doctor for my results and maybe he can fix me.