Day 4 - #HAWMC WEGO Health Writer's Blog Challenge - for the Month of November 2016

Day 4 - #HAWMC - A Letter to "Myself" at the time I was diagnosed knowing now what I did not know then....

 

 

Dear Rhia (self),


You had already "figured out" that something must be wrong with your immune system. You had been through enough doctors, tests, had so many symptoms resembling Lupus, RA, and several others like Sjogren's and Raynaud's that you really did not know much about.

When the 1st round of labs came back, from my own PCP (who diagnosed me at first), he knew that you needed to see a specialist. Although you come to find out your PCP has been more beneficial with the Lupus and Lupus Flares, that the Rheumatologist, who concentrates more on the RA than the other Autoimmune diseases.

You now can recall the first Rheumatologist, even though he was quite elderly, had just came back to work after a stroke himself, but his diagnosis, just after a thorough examination gave proof enough to show not only did I show signs of Lupus, RA, Raynaud's, Sjogren's, but had findings of probable MCTD, and that was almost more frightening than the Lupus and the others.

My moments that now I wished I had realized that ALL RHEUMY"S are NOT THE SAME, is something I wished I knew when I was first diagnosed. That caused me going through at least 7 specialists, each of which had a different "edge" and look on my diseases, or lack thereof. Most of them were only "blood work" driven. Not anything to do with all of the symptoms I had for years and years.

I could have saved myself a great deal of stress, worry, and getting nowhere, had I known to search for the "proper" Rheumatologist from the beginning. I've also come to find out my doctors here at my local Urgent Care know more about my conditions, than my Rheumy's for the most part. Plus if I am in a severe flare, there is no way I could get into my Rheumy in Dallas quickly. With those at Urgent Care I can be in and out, have the medications I need, and be hopefully on the road to curving the flare, without having to drive 40 miles each way, and maybe not getting what I need.


When I found out that I had 2 or 3 other 1st cousins, all on my Mom's side with RA, then we each began to piece together that this could very well be "genetic".

I wished I had known more about Sjogren's, for one. Maybe had one doctor done more about the Sjogrnen's I would not have lost ALL OF MY TEETH WITHIN A COUPLE OF MONTHS, requiring severe pain, and many dentists visits, to have all of them pulled that were left, and then try to deal with dentures, and the expense of over 15,000.00! Now I am still left with "pretty straight" teeth, BUT "fake" in nature.

So, I also wished I had more knowledge of how I could have been a volunteer and advocate before I myself had been diagnosed. I think had I been involved in some ways with the organizations who help us I may have felt "better" about myself, and not so ashamed of what these illnesses can do to us, our minds, bodies and souls... plus relationships, friendships, and the way people "see" us after we are ill.


#HAWMC

WEGO HEALTH

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NPR - Trying to Find Solace from Isolation - A support Group

I have a question for EVERYONE that is either interested in an "online support group for chronic pain and illnesses OR having a Local" group here in my home town - all that are fairly close here in Ennis, Waxahachie, Ellis, Navarro Counties, I have given thought to this for a long time... here is an article from the National Pain Report. - I know many of you feel "isolated" and alone like I do when it comes to our chronic pain and illnesses. Even though we may have family or friends that "try and understand" it is NOT the same thing as having people around you that KNOW because THEY TOO are going through the exact same thing. With the entire ordeal now over chronic pain, and pain medications, and also the use in some states who have legalized "pot" - we still have much stigma, many that do NOT believe us, even the professionals, and trying to cope with that can be almost unbearable. You are already dealing with chronic daily illnesses and pain, then to try and go through "daily life" surrounded by many that may not support or even believe you is devastating. So, PLEASE SPREAD THIS AROUND!!! I will put it up on my blog, my newspaper, and around, but I also NEED HELP IN GETTING THE WORD OUT. If I have enough local people I may consider a group locally. If not, then something online, BUT something that truly gives everyone support.. not just the same old thing.., sometimes groups just don't make it because people become frustrated when they cannot really get the help they need, yet they are putting their time and effort into it. A couple of examples - in the past month, I have had my eye specialist, that I have been going to CANCEL ON THE DAY OF MY APPT. and NOT CALL ME! So, happens, I just had that "feeling in my gut" and since I have to drive about 15 to 20 miles to see him, I called the 2nd time and sure enough, they had "moved" my appt to 11:45AM and it was supposed to be at 2:45PM....NO ONE called at all... and then when they rescheduled it was going to be another 3 or 4 weeks AGAIN before he could see me! It wasted MY TIME getting dressed and ready, when I could have been doing other things, it put off once again an exam that is already way past due partially because of one of my Lupus medications that can cause macular degeneration, and my eyes and glasses are WAY OFF! I am having headaches, not sure if the glasses are related , BUT I got upset. So, I called another eye doctor in Waxahachie and he could see me the next day! But, I had another appt. with the plumbers, so they could see me that Friday! I got there, was checked in and lots of people were coming in and out, so it is a fairly busy office. But, they got to me promptly within 5 to about 8 minutes of my scheduled appt time... they were very accurate with the latest type of equipment, and in fact, so good, I did NOT have to go through old "dilation" of my eyes. He had some very up to date digital equipment that read everything very accurately. I saw him, he told me that I was okay, and no signs of the degeneration, BUT of course I have "cataracts" that are NOT near ready to be fixed. They are not "ripe" enough I believe is what they call it. So, I decided since my exam cost me NOTHING, no co=pay at all, and my insurance was giving me 40% OFF my lenses, frames, and 20% off of the "changing to darker" transitions I guess, and the doctor had put in my script all of that, plus my special prisms that have to be in them due to the double vision.... so I saved something like 160.00 or so on the frames, lenses, and all they needed to be added..., I was SO PLEASED AND WILL DEFINITELY RECOMMEND him to anyone in this area. His staff were extremely nice, they knew their "stuff" and I was so pleased that they were all so very nice and polite! Of course NOW I await my glasses, and did this the Friday before Labor Day, so I am sure it maybe the end of this week (hopefully) before I get them in... the prisms also sometimes take an extra day or so, so it will be 2 weeks this coming Friday. I hop they get here.... But that is JUST ONE EXAMPLE of us as CHRONIC PAIN OR ILLNESS patients (and others when it comes to their time) that is something I should NOT have had to deal with. Doctors EXPECT US TO BE ON TIME AND CALL 24 HOURS AHEAD IF WE CANNOT MAKE AN APPT. - but OUR time is NOT as important for them... Another example was the same as my own regular MD's office. I had an appt. week before last, I was already there and IN THE ROOM waiting for him.... and the nurse steps in to tell me he is "running behind" and would I prefer to reschedule? I TOTALLY understand sometimes emergencies arise, BUT again that has happened to me several times with him over the past couple of years.... those are things that are so frustrating, and especially when you are chronically ill, in pain, & already having been fatigued, plus dealing with showering, dressing and getting yourself to the doctors office.... so, I can see so MANY different aspects of how a online or in person group, potentially could be so beneficial to so many of us. As I told my daughter just this morning, with Mom gone, I have NO ONE HERE to talk with, visit with, etc... my daughter, and I are close as far as talking to one another at least 4 times a week, but she is 8 hours away as far as being physically close... my son is also working and does not live close by, so it is not like I had when Mom and I were within 5or 6 blocks of one another... I feel so very isolated and alone... plus I am dealing with a HUGE amount of guilt, due to issues my Mom left that I didn't know about, thus now I am having to try and cope with... and had I known before she got so ill, I may have been able to "fix" what she has kind of "wronged" leaving me hanging with it all... anyway, just a thought about a group and the article I read.,

http://nationalpainreport.com/chronic-pain-isolation-start-a-support-group-8830919.html

A Question We Often Avoid - Why do "Chronic Pain Patients Commit Suicide?

This is a subject we often do NOT want to speak about. But, it happens daily in our lives, for all kinds of reasons... this U-Tube Video is a gentleman speaking about a questions asked to him in a group setting about "Why Chronic Pain Patients Kill Themselves?" 

I watched the video and what he says is true... there can be all kinds of reasons, but for anyone who had been "healthy and stable", and suddenly something comes into play that takes away all "hope" then those are people that can suddenly decide they no longer can take another day, due to the pain, there is no "hope" for something better in the future and so forth... so I wanted to share this with all of you today... 

https://www.youtube.com/watch?v=QpRr-A3JKyo