I'm Having an Affair ... And It Was One of the Best Days in a Long Time!

Tuesday, February 07, 2017 0 Comments A+ a-

I've finally found a Rheumatologist in Florida that has years of experience with Scleroderma patients. The clinic is FABULOUS (I'll tell you all about the day in a moment) and I'm very excited. It was a long day with a lot of funny little bits and pieces, so hang on for the ride and some laughs.

My Rheumatologist in Maryland has been with me since day one with Scleroderma. That's 15 years with Dr. Wigley. Aside from family members, he's the longest lasting and quite meaningful male relationship I've had. Obviously from a doctor patient perspective and yet, he's been family, too. He loves his patients and provides great love and care. He's been with me through two failed marriages and saved my life, literally, on more than one occasion. I have a love for this man that will last my lifetime. So, to now go see someone else feels like I'm stepping out. Like I'm having an affair.

It's not that he doesn't make me happy. It's not he's not giving me what I need. It's not him ... it's me! Long distance relationships rarely work. Someone always needs more than the relationship can sustain. Often times, someone steps out. In this relationship, that's me. I'm cheating on my rheumatologist because I found someone new. Someone that I can see on a regular basis without spending half a fortune and multiple days to fly or drive states away and hope that nothing pops up that we have to try to cram into the visit before I return home.

Not to worry. Dr. Wigley knows. We have an open relationship like that. He even thinks it's a good idea. Which was an actual conversation that lead us to today and all that has occurred since 0815 this morning.

For the first time in forever, I actually was out the door ahead of schedule. That NEVER happens. I start out ahead of schedule and before I know it, I'm running out the door like my hair is on fire and all in a panic because ... yet AGAIN, I'MA BE LATE!

Not today. I was out the door 15 minutes early, I got tea and filled up the gas tank. I tried out a new clip for the card at the pump (video coming soon) and that worked beautifully. While the gas was pumping, I went in to buy a pair mittens I saw a few weeks ago and when I come back out, there was GAS EVERYWHERE!!! I couldn't avoid stepping in it to get into the car and it was a little slick. I felt like an ass for having this happen and this is where I started to worry the day was going to hell in a hand basket.

I chose to not think about it like that and get on the road. Listening to my new favorite station (Tampa's Magic 94.9 and they have an app, check it out - it's da' bomb) as one of my daughter's favorite songs from when she was in high school came on. One of those songs she played to death and we all grew to hate. Now, it makes me smile. I was at a red light so I was texting her to tell her ... at the same time, she texted me to tell me she loves me and to have a great day. AWWWWWWW and funny as hell coincidental.  The very NEXT song to play was the current favorite song of the dear sweet 8 year old that lives with me. The song that she asks to be replayed 50 times if it's on on my phone. I hafta admit, it made me a little teary. So, I called my roommate to tell him about this and tell him about my gas situation and before I could even finish anymore than saying "I came out and there was gas..." when he exclaimed "IT WAS YOU! YOU WERE THE CULPRIT!!!" WTF, Dude? Why you yelling at me? He proceeded to tell me that just before I called him, he stopped for gas and slipped in a puddle of gas at the gas station and his shoe went flying across the parking lot. *snert*

Yep. Guilty. That was me.

I proceeded to drive my 3.5 hours down I-75 and across Alligator Alley jammin' out to this new station that really was partially the key to a wonderful drive. It's a station filled with music that is from all over the decades and keeps my booty moving. A lot of songs that are guilty little pleasures that I don't like enough to put into a playlist, but that are awesome enough that I didn't need to change one single song. I dig that!

Add in that I didn't get tired once on this trip, only had to stop for one bathroom break and arrived to the clinic 40 minute early. It was shaping up to be one helluva great day!

The Cleveland Clinic in Weston Florida may now be my new favorite clinic. It was simple to find. Parking was easy and free. The facility is new and very well decorated. Every staff member I spoke to was friendly and cheerful as all get out - from the elderly folks manning the information desk to the woman who checked me out and set me up with my follow on appointments. They all seemed to be pleased to be there.

When I arrived at the clinic there was the option to use a kiosk to check in or to see the reception staff. I'm a geek, so I opted for the kiosk, plus I like to leave the receptionists available for those that might prefer personal help or are intimidated by the technology. It was extremely simple, to include scanning my ID and my insurance card. There was attendant on hand who stopped by to check on me to make sure I was doing ok, as well.

I was taken back promptly for my appointment and did the usual weight and vitals checks... 102.9 lbs Y'ALL!!!! I haven't been above 100 lbs in at least 5 years! VERY exciting news! I spent about 20 minutes with the nurse so that she could input my necessary data into the system. Then an intern or fellow (I don't remember for sure) came in and spent a few moments making sure HE understood my history.

During this process I discovered, that, for the first time in ... EVER ... I had to take my sweater off!! My toes were cold, but the rest of me was NOT! That's new in a doctor's office.

Here comes my ONLY complaint about the clinic and here's a warning ...I'll be sharing a little TMI, because it makes the story funny, is just how my life often works out and precisely why I use humor...I don't have a choice! If I couldn't laugh at this crap, I'd be miserable 100% of the time.

At this point in my visit, my colon, that is already lazy AND has now been in a full on strike (because I've been taking pain killers to manage ulcer pain at night) for the past week or so decided that NOW ... as soon as this gentleman was done examining me and JUST before the doctor came in ... NOW .... I repeat NOW, was a great time for a bowel movement. There will be no waiting. YOU GO NOW!

Great.

Fortunately, the restroom is right across the hall. I go. I do my business. ALL THE BUSINESS! And THIS is where I get pissed. Or pooped, if we're sticking with being funny. It's not just a complaint with this clinic, it's a complaint with a lot of medical facilities over the past 15 years. It's to no fault of the clinic either, it's just a design flaw in whomever sets up the bathrooms. I know the intended purpose is to assist disabled individuals...and I'm sure it does ... just not me. ....... The giganto toilet paper dispenser with the two giganto rolls of tissue thin paper in them are placed UNDERNEATH the handrail...with toilet paper hanging out below me. You have to bend down to get the toilet paper out. WTH?  This is NOT functional when:

  1. you have no flexibility in your hands or wrists to grab said toilet paper
  2. the rolls of toilet paper weigh a bagillion pounds and when you try to pull out the tissue thin paper, it rips off in tiny pieces that are even too small for a hamster to wipe its ass - like really, people? I just unleashed a week's worth of who remembers what in your john (seriously... think 'Christmas Vacation "shitter's full"') and you expect me to do what with these pieces, exactly? I don't have a shaving knick here folks!
  3. If you're not going to work with us on this aspect...maybe consider putting in some bidets? A hose down and air dryer might be an alternative here!
Somehow, I manage to wrangle enough out of the dispenser to take care of business, wash my hands and head back in to meet my new "love".

This a great way to start off a first date.

Dr. Donahue is my Rheumatologist. Wonderful man. He's been working with Scleroderma patients for years AND ... here's another bonus ... The CC uses the same software application as Hopkins, so he has MY ENTIRE 15 YEARS of medical records at his disposal. Do you hear the angels singing?



He knew my history before he came in. We discussed everything from my perspective. I admitted that I've been less than a "good patient" since moving to Florida.  I haven't put the time, energy or money forth to do so because my care team was back in Maryland. I didn't want to go there all the time for treatment. I didn't trust anyone here because I had no desire to work with doctors with no Scleroderma experience and worry that I would be their show and tell project or that I would have to teach them. I've voluntarily participated in enough actual clinical trials and studies in the past ... I didn't want to be a test subject for someone new. Therefore ... I took the "easy" way out. The path of avoidance.

He listened. He understood. He didn't chastise. He agreed with me. Though I get the sense that he supports the use of pharmaceuticals as a first line of defense (not unexpected) he was also understanding and appeared supportive of my desire to manage this as naturally and holistically as possible - knowing that I can't always avoid drugs, but that I want to try to as much as possible.

He examined me. I didn't have to get undressed. We made a plan. An all encompassing plan.

I will see him every 3 months or so, like I would Dr. Wigley when I was in Maryland AND .... before I left, I have appointments with the rest of my new healthcare team in Florida ... I have consults with a pulmonologist and a gastroenterologist in April. The same day I come back for my follow up with Dr. Donahue. THE. SAME. DAY.

The only foreseeable snag will be finding a hand surgeon here to move forward. He was honest to admit that the surgeons here tend to not "not want to touch" these types of hands. He does have someone in mind to try on for size and we'll go from there. That portion, while annoying and painful, isn't a priority right now. My GI issues and continual care are of importance. Once we have those worked out, we'll move on to the next thing.

I was there 2 hours total and had a wonderful experience. Again, the staff was SO wonderful and supportive.

Upon leaving, I have received confirmation emails from the clinic with separate barcodes for checking in ... like at the airport. How cool is that?

 



After the appointment I contemplated driving home. Then I opted for adulting, being smart and choosing self care versus nonsensically being a road warrior. So, I grabbed a hotel for the night. I grabbed something close by and more expensive than I normally would, but I was exhausted. I reminded myself what I often tell my roommate, sometimes I forego cost savings for ease. That's just what I did. And, if I think about what it would cost for me to trek to Maryland for this appointment ... this was a drop in the bucket and well worth it!

So, there you have my lovely Scleries!


I feel like this day has possibly been a catalyst for some major change and getting back on track for me. It's been easy to slack off for the past 7 years because I could "scrape by and get away with it". Was that "good"? No. Was that healthy? Nope. Can I go back? Absofreakinlutely no. So, now, I get my ass back on track. I check in when I need to. I do what I need to do for me so that I can ...


Yep, you guessed it...


Persevere and rock on!  💋   🤘🏼