Ashley's Journey to Wellness - Entry #7: My Mayo Clinic Update & Thoughts on "Complaining!" - Ashley Boynes, Community Development Director, WPA Chapter

As my “readers”, coworkers, friends, and family know, I spent last week at the Mayo Clinic in Rochester, Minnesota. I ended up having to stay a day longer than expected and while I was there, had many tests/procedures done and (luckily) many things ruled out, which was a blessing!

I decided to sum up my trip as succinctly & easily as humanly possible!

The hospital itself was BEAUTIFUL – more like a combo of a hotel + museum than a hospital. They had art from Andy Warhol (his “flowers” collection – Loved it!) and others, and artifacts from when they opened in the late 1800’s, as well as gorgeous and unique blown-glass chandeliers, plates from the White House, an old-fashioned “carriage” ambulance, etc. Notably, almost everyone in Minnesota – especially the hospital staff and hotel ppl – were extremely nice, accommodating, pleasant and helpful! It WAS really cold (high temps of 5 degrees, windchill factors of negative 27!) but it is quite neat because there are enclosed walkways connecting everthing: hospital, mall, hotels, salons, restaurants, stores, etc.

Thankfully, while I was there, they ruled out: diabetes, thyroid/adrenal problems, diabetes. The neurologist also doesn’t think it is Multiple Sclerosis. While I am “at risk” for MS, and “on paper” have many symptoms, upon physical exam she was not impressed enough to want to do a spinal tap (lumbar puncture) especially since brain MRI from 6 months ago was normal. Yay! Also, my bloodwork did not indicate any malignancies, thank goodness! Lastly, my Rheumatoid Arthritis is showing as fairly under control from an inflammation standpoint – more in-control than it has been in years. I still do have pain (for instance, today = mega flare!) but, who knows, it could be from osteoarthritis or back problems or fibro or even from my Celiac Disease! (which is what I went to Mayo for in the first place.)

I got a few diagnoses, some of which I was already aware of, some of which I was not.  Nothing that I am extremely upset about; most are not a big deal. I have osteopenia (this I knew of) which is the precursor to osteoporosis and means low bone mass/low bone density. I am borderline Vitamin D deficient, as well (from the malabsorption part of Celiac, which all of my problems are related to) and need to stock up on Vitamin D, Calcium & Vitamin K. Luckily, I like the Viactiv chocolate vitamin chews, they are gluten-free, and, I do not have to go on another medication for this! That’s a plus! I have slight hearing loss in the upper register, accompanied by nonstop tinnitus (ringing in the ears) – no tumors or blockages show up on MRI & my auditory canal looks fine upon exam! More good news! The rest of my audiology exam was fine and so they think that the ringing/slight hearing loss is from Celiac damage, or maybe even my past bout with Bell’s Palsy, and nothing they can really do, it is not particularly treatable or curable – I could have the ringing forever, or it could stop tomorrow – the slight loss is permanent but is not too bad that it affects my life. I’ve had this for almost two years, and at most, this will be a slight annoyance that I will, in time, not even notice, most likely!   I have scoliosis, which means my spine is slightly curved, which I never knew….and also some sort of bump or bone fragmant on my C4 Cervical Spine that I’ll need to get looked at (again, something I didn’t know about, but it could be contributing to some pain, my knee problems, sore neck, headaches, etc.)   Last but not least, I have a tiny cyst on my kidney but it is nothing at all to worry about according to doctors. Don’t know what it is from, but  I don’t really care, since it isn’t anything to worry about! It is just something to monitor again in a few years and is basically not a big deal.  Oh, and I was also diagnosed with chronic daily headaches and migraines, as well as slight neuropathy, all of which I already knew that I had. The neurologist at Mayo said she can’t say what caused/causes them but would guess they are Celiac-related, like everything else probably is.

My (third) upper endoscopy went quite well, it seems. As far as the surgeon could see “to the naked eye with the scope, everything looks ok…which is good! (In some past ones, there was visible intestinal damage.)  They tried to get aspirations of stomach fluid but there was not enough to take samples of . They did, however, manage to take 8+ biopsies.  While I was  at the Mayo Clinic, I got an X-Ray of my spine, Bone Density test, 16 vials of blood taken, CT of abdomen/pelvis, and an upper endoscopy with 8 or 9 biopsies. I also had consults with gastroenterology, endocrinology, rheumatology, and neurology docs and gave some of my blood to be part of a Mayo Clinic Celiac Study. One test that they sent out may not be back for a month. This test was for autoimmune enteropathy.  They are also looking for amyloidosis and Collagenous Sprue &  true Refractory Celiac but since my endoscopy looked OK they do not think that it is either of these, and I hope not b/c these are more dangerous than regular Celiac, but like anything I will get through whatever it turns out to be!

I have to wait til all tests are back to get a true plan of treatment. For now, I am sticking with all of my meds/supplements and infusions, etc. along with the gluten-free diet, of course. Also, I am starting chiropractic treatments again. I recently joined a gym and hope to do more yoga, and am trying to eat very healthily as I’d mentioned in past blogs. (For instance, my dinner last night was spaghetti squash & split pea soup….yum! I’ve really limited sugar & dairy intake as well and try to eat organic when possible and also limit carbs….well…aside from on the weekend! haha) So for now, I wait. It seems most or all of my problems are from the Celiac Disease. It is unknown how long I had this for, and therefore may have had it without knowing, and therefore not treating it. My arthritis meds probably masked the symptoms of the Celiac Disease which was good on a “comfort” & “quality of life” level but which wasn’t great b/c I didn’t know I had it and so the disease progressed. As many of you know, most people do not have all of these complications with Celiac Disease, in fact, it usually isn’t a big deal at all….so if you get this diagnosis, do not be scared! (Also: just a tip. If an immediate family member has Celiac Disease, you are advised to be tested for it just to be sure! Many people have it WITHOUT presenting any symptoms!)

One good (GREAT) thing about the trip was that I got to eat a lot of GOOD YUMMY gluten-free foods & all the restaurants there have gluten-free menus and the food was amazing! (Raspberry creme brulee, pistachio gourmet gelato, cheese ravioli, pizza, all GF! OK, so I didn’t follow my little diet plan, other than staying gluten-free, of course, while I was there b/c I had to fast a lot and so I felt that I owed it to myself haha! And I had to drink liquid Barium Sulfate one day, so that night I felt like I deserved to eat something fab!) I also hate flying and was quite anxious over that, but all of the flights went well! I had appointments most days from 7:40 in the morning, until 5pm or later in the afternoon. So, there was not much free time and this is something you should be prepared for if you ever have to go. In fact, we ended up having to stay longer than initially expected – but they really did try to cram EVERYTHING in there! (My Mom and I DID manage to get fabulous steam facials at the salon/spa in our hotel, AND enjoy the pool/jacuzzi each night, which was nice! My wonderful boyfriend also surprised me with a sweet card and flowers sent to the hotel, so I did have some very nice moments during the trip and “made the best of it!” Photo to the right is my glowing skin, no makeup – except lipgloss – afterfacial….I was feeling refreshed and rejuvenated! I recommend that everyone get one at least once in life.)

I would recommend the Mayo Clinic to anyone who has unresolved health issues and who is able to be seen there. It is busy, but the hospital is easy to navigate, everyone is friendly, the doctors are very knowledgable and seem to actually care, and there are many neat and historical things to check out while you are there….to make the trip a little more pleasant!

Being there put a lot of things in perspective. It really makes you think that things aren’t that bad, when you see cancer patients, and you also see all the things that they test you for – any of which could have came back positive, and, in that moment, could have been life-changing. So I’m thankful that I went. I’m thankful that they were able to rule things out, and I’m certain that my health has nowhere to go but in the direction of better! At least, I hope

I’m also very thankful to have this as a venue in which to share my story. I try not to complain, so when I get to vent through writing and share ALL of the ups & downs, goods & bads, and the reality, simply stated, of every day life for myself and many others like me, it feels wonderful. No one should have to suffer silently, and, ya know, we all have our “down” days…  but having an online community of support makes staying positive a little easier! One thing that saddens me is that some people – usually those without health problems – think that ’stating the facts’ is complaining. If I tell someone that I have a headache, or “oh my arthritis is flaring today” – I don’t see that as complaining. Do you? If I have a “the world is out to get me” bitter attitude, or whine 24/7, or do the whole “woe is me” thing – that is a different story. This is annoying, as are people who complain constantly about nothing, not knowing how good that they have it. (That’s a whole other blog in and of itself! Ha.) I complain about 1/10 … maybe even 1/100 … of how much I COULD be, and that’s more than some peopel do – I know many people are suffering and do not feel comfortable venting AT ALL. That isn’t fair to these folks. So I want to tell you ALL that if you are hurting – physically or otherwise – vent to me! Bring on the complaining! I truly don’t mind (if you do actually have real reason to complain)….because, for me, sharing your own story is part of the journey, part of dealing with your struggles, and, I think, a part of healing! Also: look at it this way – if someone asked how you felt one day and you were feeling fabulous and healthy and happy and said so, there isn’t anything wrong with that. However, if your health is bad, and your answer is, “hangin’ in there” or “not so hot today” or something along those lines – that is seen as negative to some. Why? It’s just as true an answer as “fine” — and a heck of a lot more honest! What are your thoughts? Should we have to mask our truth? No one wants to be friends with a Negative Nancy or a Debbie Downer, but, the reality is that these things ARE *our* reality! This being said, you do not have to become cynical, bitter, or pessimistic all the time – that’ll get you nowhere fast….and we have to learn to keep on smiling & to “play through the pain!” You can still be nice and sweet to others, be happy, and lead a wonderful and blessed life, but also still be honest and true to yourself and others about what you were going through. I think that it takes a strong person to be open and honest. So, I invite you all to share in my journey by sharing YOUR own stories, because, after all, one of my main purposes seems to be to let people know that no matter WHAT you are struggling with, healthwise or other, you are NOT alone!

Have you had an experience with Mayo Clinic, good or bad? Any questions for me about my trip/experience? Do any family members of yours have Celiac Disease? If you have questions about being tested or going gluten-free, let me know! Do you think that talking about your health is complaining? Please share any stories, thoughts, questions, and comments. I hope that all of your treatment plans are working, and that you are all on the path to wellness with me! Thanks for reading and for your ongoing support! I love the feedback and comments!

Stay well,

~ Ashley Boynes

Community Development Director

Arthritis Foundation, Western PA Chapter

“Voted Best Blogger in Pittsburgh!”

Click here for Entry # 1 in Ashley’s Journey to Wellness – Come Along for the Ride!

Click here for Entry #2 in Ashley’s Journey to Wellness - It Could Always Be Worse

Click here for Entry #3 in Ashley’s Journey to Wellness – Being a “Patient” Patient

Click here for Entry #4 in Ashley’s Journey to Wellness – X-Rays & Holidays!

Click here for Entry #5 in Ashley’s Journey to Wellness – Nutrition, “Hair-Pain”, Dermatofibroma & a Fresh Start!

Click here for Entry #6 in Ashley’s Journey to Wellness – Insomnia & the Mayo Clinic

Also check out our other Rheum for Wellness blogs and be sure to leave a comment and share with friends! Recent entries include a celebrity guest blog with singer & American Idol contestant Justin Williams (a cancer survivor at age 27!), a piece on the importance of sleep, an entry on advocacy, volunteerism, and the 2010 Advocacy & Kids Summit, and more! Check them out! Don’t forget to check out our chapter webpage, too, for exciting updates at: http://westernpennsylvania.arthritis.org and our new Arthritis Radio episode with Congressman Tim Murphy here!

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