Sup yo. How is everyone doing tonight? I know it’s been a while since my last post. Sorry about that. Things have been kinda crazy as well as I have dealing with quite the Meganitis Flare. Yup, full on FML mode.
So , yeah the flare is super great. After 4 and a half years , I still have all the same symptoms ( except the rash, thank God ) and still no answers. I live in constant pain, some days are better than others. And I have come to accept that Winter and the cold make it worse. I feel better in the warmer months, I would love to realize that I am in no pain, honestly don’t see that happening , but a girl can dream.
As far as my weight loss surgery goes – its great, down 80 lbs! I need to work out . That has been difficult since the daily pain plagues me. But I keep trying to make better choices , definitely navigating better though.
Which all brings me to today … I am determined that this will be the year I put a name to what I refer to as Meganitis. My rhumetologist is great, but I feel like we keep going in circles. The plan has been to treat the symptoms rather than dig deep and get a diagnosis. And, I was okay with that . I just wanted to feel better. But now, I am at a point where this bitch needs a NAME! I feel like if I have a name for this – I can effectively treat it.
I am all out there. I wear my heart on my sleeve, I cannot keep shit in. I am very open about my condition and my struggles. The reason I am so open about it is, what if that one person I share my story with has the same issues or knows someone that does. I do not want to miss out on the opportunity to gain knowledge about this or to help someone with what I have done to cope. In being so open, people always have always told me that I have this or I have that , or I need to do this or I need to do that . As much as I appreciate everyone’s concerns and I know that everything comes from a place of love, none of them are doctors. But, what I do is take the information people send my way and I do my own research as well as discuss it with my doctors. Sometimes its a very easy answer why XYZ isn’t my thing and sometimes, its like okay , lets do some tests and blood work and see what comes up . Normally , I would say that doctors throwing shit at a wall to see what sticks would be insane. But I am lucky that my doctors are all in agreement that I am a unique case and listen to my concerns.
This all brings my to my latest appointment today . Blood work . My PCP is doing a whole complete work up and according to the records, giving me tests that I have not previously received. With so many doctors in different locations, something gets lost in communication. I get it. It happens. But that’s also the reason I have my binder of tests, procedures, and surgeries. Someone’s gotta right?
My mother has been on my mind lately , more than usual. It hit me like a ton of bricks today . You see, every appointment, every lab visit, every text or email from the doctor, I would call my Mom when I got out. Just to tell her what happened or what was happening or the plan for the next visit . Talking to her always made me feel better, most of the time I leave frustrated and she always knew what to say to ease my mind. I walked out today and grabbed my phone to call her. Like auto pilot. Cried all the way back to work.
Grief and loss , I have yet to find the way to deal with them in good way . Mostly I am just a crier. I miss her so damn much, my heart hurts. I know she is around, I do get her signs, but nothing will ever be the same.
I read this today on a Grief and Loss page and it really struck home.
Go ahead, have a good cry . I know, you feel it too. I miss her immensely, but it really is these little times that creep up and hit me hard.
I really am focused on getting answers this year . I just hope I am successful.
You know what I say … Just Keep Swimming!!!
Until next time folks !