9 months later and my 3 month check up

October 11, was my appointment. I was lucky to have both my Mom and Hubby with me. The Doctor in charge dismissed the Dr. underneath him, diagnosis of the Mixed Connective Tissue Disease. I still have the 3 auto-immune diseases, Lupus, Fibromyalgia and Sjogrens, but they do not qualify for that title. It was a good visit, I had been feeling well. The last, added med they gave me helped. I had been feeling down about how many pills I have to swallow twice a day. I asked if I could decrease the Gabapentin for the Fibromyalgia, they said yes it was safe to decrease. Blood pressure was really good, I lost 2 pounds since last visit, thats a total of 12 pounds since January. Doctor ordered lab, as usual. Now he wants to find out the range of the Lupus.
Well here I am a month later. I decreased the Gabapentin. It didn't work. I started to feel symptoms again. Stabbing pain in my shoulder. Just feeling miserable and tired. I put myself up to the dose I was on before. Now I am feeling better. However, today, I am feeling sad, for no reason. I don't know if this is because of the med, cause it happen to me before, but at a higher level of anxiety. Or is this pms. I even had a sad dream last night. I wrote that in my other blog. Its, one of those, "just gotta get through the day" days. I haven't had one in a long time.

Mixed what?!?!

So its been 3 months since my last appointment. 3 months since my diagnosis of Fibromyalgia. 3 months of taking medication. 3 months. I honestly have had some good days, but I am still tired and new symptoms have appeared. 

I really didn't know what to expect when I went to my Rheumy appointment on Friday. I thought, they might change my medication, or increase the dosage on what I was taking now. {{Sigh}} I wasn't even close.

I started with my list, then the Doctor went through his list, his superior came in, to confirm some stuff, they walked out to get some stuff ready. Oh let me remind you that I still have that, what I thought was a rash on my legs, from my knees down.

So while I was waiting for the Doctor(s), another Doctor came in with a team {{about 6 of them}} of "learning Doctors" and said, " I hope you don't mind, please sit down and show them your legs", I responded with, "wow, I must have something pretty amazing to show" {{just in case I was not embarrassed enough}} as I lift my pant legs, the Doctor said, "go ahead touch them, feel it". At this point I notice none of them have gloves on, hey this might be a good thing, it must not be contagious. The Doctor says, "do you feel the blood vessels, they have risen to the top", learning team oo's and ah's. 

The other Doctors come back. They tell me I have Mixed Connective Tissue Disease."Mixed what?!", I say as I try to stay calm and write everything down (my note taker was not able to go with me). They explained to me that I have, a little of Lupus, a little of Fibromyalgia, and a little of Sjogren's. My immune system is still attacking itself. Which is what is going on with my legs. They wanted to do a biopsy, but decided to have me take a new medication for 30 days to see if that helps. They are also concerned about the amount of protein in my urine test.

From the moment I left, till now, I still don't know if this new diagnosis is better, worse, or just the same as before. I do know by the time I got home, I told God I was mad at him, seriously, what have I done to deserve this? Then I quickly said sorry.

I don't understand all of this, maybe I am not meant to. At times I wonder who's life I am living, cause it doesn't feel like this is the way mine was suppose to turn out.

Well another waiting game, 30 days of medication, another urine test and see the Rheumy within 2 months.

BTW, I knew I had symptoms of all 3 of those diseases...I guess it just took time for them to show themselves to the right people.

So we can rule out Lupus?!

In less than a month I received a phone call from the Rheumatology Department. This appointment would be exactly one month and a day from when I saw the Doctor. Who said it would take at least two months. April 19, 2013 was my appointment and it was very thorough. The Specialist said, "We can rule out Lupus." My Hubby sat straight up in his seat and said, "So we can rule out Lupus?!". My x-rays looked good, no deterioration, no Rheumatoid Arthritis. I had no swelling in the joints. The Specialist explained that some can test positive for Lupus (ANA positive) but not have Lupus. So what is it? I have Fibromyalgia. They gave me meds for treatment and game me one more blood test to rule out another autoimmune (like Lupus), called Sjogren's. Every Doctor I have seen from the beginning of the journey has been wonderful.

After the storm....

I feel like I told everyone that I needed to tell about "most likely" having Lupus. Its been interesting an and emotional ride, and not just for me. Initially  everyone displays a great sense of concern. Is it just formality? Life is busy, people are busy with their own lives, why should I expect a weekly "how are you?" Maybe, people think, "no news is good news". My parents don't even call me or text me weekly anymore. I get a text from a Brother about once a week. I have one Cousin who calls me about every other day, shes great support. Why? Because she too has Lupus and knows what I am going through. She sends me recipes and encouragement. I so do appreciate her. My BFF use to call me everyday, or at least an email, not so much anymore. Maybe reality is to heavy to face on a daily or weekly basis ... I understand that ... just wish I could avoid reality daily.

Good News....wait for it...

Well, since the 25th of March, I have been maintaining my inflammation. It has its good days and its bad days, but it has not completely ever gone away. I found that Milk helps me with my exhaustion, which I am assuming is because of the vitamin D. I drink a cup of Ginger tea every day, which I believe is helping me with the inflammation. I took myself off the pain killers about 2 weeks ago. I wasn't in any pain, just discomfort. That was a rough couple of nights, sleepless and a bit of anxiety.  I can't imaging how it is for someone who has been on them for a long time. I am still on the naproxen and blood pressure pills. I noticed that when I was off the naproxen for a day, I felt pain, in my writs hands and arms/shoulders. It hasn't been till the last couple of nights, that I have been able to sleep through the night, since this whole thing has started. Also the last couple of days, when I wake and start getting ready for the shower, I feel a rapid heart rate, like if I have walked around the block. By the time I get out of the shower, I have to rest. Every once in a while, when I take a deep breath, its uncomfortable in my back, kinda below my shoulder blade, also, I get a pressure on the left side of my chest.
I don't take exhaustion lightly anymore, if I feel tired, I let my Hubby know, I need to go home early from work (we carpool and he is very flexible), I stay home (which I have really only needed to do once), or I just go lay down when I need to (the family has been really understanding). I've been feeling tired, the last couple of days, even though I have been sleeping through the night, feeling tenderness in my shoulders and yesterday I thought I saw my eyes yellowish, and with the rapid heart rate, I started to worry.
So this morning I took advantage and got a late start to work and rode with my daughter. On the way, I got a call, it was the Rheumatology department, giving me an appt for April 19! FINALLY! That took exactly a month from when I had my first doctor appt. Such good news and such a relief. In a week I will be diagnosed ... with something.

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.