How Are You?
Autoimmune Diagnosis frustration is a real thing. The question I have been asked so many times over the last year by friends & family. The journey of Autoimmune Disease is hard. Getting a diagnosis is frustrating, confusing and lonely. Does your Doctor Listen to you? Do you think it’s all in your head? Family and friends think you look okay from the outside so nothing is wrong?
This past year I have faced health challenges, nothing life-threatening but took away my spunk, energy and moments in my life. The journey started almost 3 years ago.
First The Headaches
It started with a headache and a couple of sore fingers. Doesn’t everyone have headaches? The ones where it hurts all day but you can get through it. On really bad days you just come home and lay in your bed perfectly flat and still with no noise and dark. The fingers I cussed every time I accidentally hit them on something as “old” age thing. My first appointment was with my family doctor I left with lots of questions and need for blood work. She is a thorough compassionate doctor who isn’t over the top. When she called with the test results she was relieved as she thought something way more serious would show up. All of my labs were normal outside of low Vitamin D. She knew I was happy but still perplexed as I felt awful. Go see your friend the Physical Therapist and see if he notices anything.
How bad is it when you are sad and happy at the same time that you don’t have a “diagnosis” and no reason for how bad you feel. Are you losing your mind? These are some of the reason and Autoimmune Diagnosis is Frustrating.
Off to the physical therapist and found that my neck muscles were so tight that they were constricting blood flow. After getting a good work over on my muscles the next day I can’t even get off the couch! My neck is so sore but better at the same time. Really my muscles were that tight? More appointments and questions about why is my neck have swelling and my fingers always this swollen. My answer….. “my fingers are fat from gaining weight not swelling.” After months of therapy and learning to watch for stress signals through the day so I wouldn’t tense up my neck and exercise my headaches are completely gone! Victory!
Stress…. Like a badge of honor, I think I deal with stress very well. My blood pressure is always very good no matter what. When the Physical Therapist challenged me on how well I handle the stress it was a blow…. “Uh Brenda your is saying otherwise”
Okay got it so during the day of trading pay attention to my body for stress triggers. Sure enough, when the market takes a big turn my shoulders would start raising and tensing. Catch the trigger breath through it and relax the shoulders. Another victory! I am healed… watch the stress, exercise and stretch my neck throughout the day.
Months went by. The headaches were held at bay and the fingers got worse. Damn old age!
The exhaustion was alive and well and taking me over. But hey, I am a good napper and it’s just how I roll so this is workable.
Fast forward to September 2018. My health is declining and I just fell awful. Basically, functioning to work. Enjoy the moment with kids as it’s their senior year in high school. Turn down any social invites as they took energy away from the two priorities. There is no going to the gym to work and even my Pilates practice is taking a hiatus. At this point doing everything to not cause more pain and conserve energy.
Back to the family doc I go… more blood work. Rheumatoid Arthritis test came back negative. Honestly, at this point I was hoping for a positive result on something. Give me something! Then I would know what I was dealing with and could “fix” it. Otherwise, I am just making this all up in my head. So back to thinking positive thoughts so if it’s in my head I can out “positive” this and get better.
Hand & Wrist Specialist
November. The doctor referred me to a Hand and Wrist specialist. The doctor looks at my hands and makes comments on how swollen they are and as he touches he notices how much pain I am in as tears spring to my eyes. They take X-Rays and they come back with noticeable arthritis in my pointer fingers.
Surprise those guys have bothered me for years and I can’t bend them all the way. The doctor starts to talk about my options etc. etc… and there are finger and hand replacements nowadays…. Wait! Back up you said what? They aren’t the best options but an option. My mind is spinning and tears run down my face. Is this a joke? At this point, I am alone and have myself convinced that no one else in their 40’s is going through this and it’s a bad dream. Next step a referral to a Rheumatologist. No diagnosis leading to autoimmune diagnosis frustration.
The appointment is made for January 21. Today is November 8th. I am getting worse. Driving is a challenge. Exhaustion is overtaking my life. At this point, the only time I give up the rest of my beloved college football season to stay home and only go out outside of work is to go to my son’s hockey games.
Thanksgiving comes. Don’t want to cook (let’s be real I really don’t like cooking anyway) or do anything that makes me move my hands a lot or risk them being touched by anything. A relative visiting asks me what is wrong with me. I tell him about the hands. The response “ Come do dishes that will make them feel better.” My response trying to explain as I lay on the couch. With the final statement from him “ Honey its old age get over it and get used to it.”
This is what old age feels like at 47? Once again, I need to get off the couch dust myself off and stop being a baby. Keep Marching on.
Christmas. I’ve reached another low. Feeling so awful that I don’t want to spend time with my extended family and friends. Staying in bed is safer and doesn’t take energy. I don’t have to use energy to present that I feel somewhat normal. But its the holidays and I love Christmas! Christmas is about being with family, going to my mom’s, eating, drinking and arguing about current events. Everyone is laughing and enjoying themselves. I move from room to room where ever fewer people are to isolate myself. As I sit on the couch my dad asked me what is wrong. I try so hard not to break out in tears and just say I don’t feel well. Dad’s response is “have a drink”. Up until this point I hadn’t had a drink but now maybe he is right and has a glass of wine thinking that the pain will go away for a little while. The next day, I didn’t over drink and no hangover but I feel worse. The exhaustion is so much that I can’t get out of bed.
January. I have read about nutrition and its effects on inflammation and fatigue. January 1st I start my first Whole 30. Day 17 the book says I should have tiger blood running through my veins and should feel amazing. NOPE, and I have followed the program to the T! I sit on my bed and start crying telling my husband something is really wrong with me.
Rheumatologist day. I am prepared to get an autoimmune diagnosis. More blood was taken. Family history – nothing. He’s pulling on my fingers as I am crying in pain. Rheumatoid Arthritis test negative. A diagnosis is a rare form of Osteoarthritis called Erosive Arthritis. Never heard of that. I am sent off with a list of new medicines and lots of fish oil. Get a paraffin bath for my hands and soak them 30 minutes 2 per day. One of the pain medicines is going to be hard on my stomach lining and has long term effects so goal is to get me off of it in 6 months. The reason for my fatigue is the amount of pain I have been in that my body has been in a constant fight battle. During the appointment, I ask him about any diet changes. His response “ I won’t go into diets” Next time you are back we will look at adding two more drugs. And off I go………
More confused than ever and so I dig into more research about nutrition, the drug effects and listen to any podcasts I can.
Next step Functional Medicine. After more blood work, food sensitivities and discussion. Her diagnosis is Autoimmune Disease that includes…. Pseuro Negative Rheumatoid Arthritis, Hashimoto’s and Endometriosis (which I struggled with in my 20’s) Wait, are you telling me you have your giving me an autoimmune diagnosis? Once you have one Autoimmune your body thinks it’s easy to pile on more. My body is at war with itself.
That day I walk out of the office happy I have more answers but also more confused and Leary of some of the recommendations.
Steps that need to be taken:
Commit to moving every day minimum of 20 minutes
Go to a Paleo Diet and get myself ready for the Autoimmune Protocol as the next step
Change my entire pantry and cooking methods
Eat organic – more on this later
Add in Vitamin B12, Zinc and 2 digestive enzymes.
Food Sensitivity & SIBO Tests
Next step Food Sensitivity test results. We make the decision to not go 100% into the autoimmune protocol but my diet is very restrictive. Take out additional foods in the top 2 categories of sensitivities. WHITE POTATOES & KALE. Kale no problem – gone! White potatoes now we are talking a lifeline! No alcohol for a minimum of 6 months. Now I know my life is officially over but wait I am starting to feel better so maybe this with bringing me more life?
Next test SIBO – Small Intestine Bacterial Overgrowth. I have always carried my weight in my stomach and bloat. The test comes back positive. A high powered antibiotic is prescribed that retails at $1500. With my insurance and a coupon, the price comes down to $400. I have come this far and the SIBO test wasn’t fun so I hand over my credit card and walk out with my prized possession. In my head, I am envisioning a pair of Sarah Jessica Parker shoes instead of 7 little pills. In 2 weeks I am feeling even better.
Frustration Listen to Me
If you don’t feel well, follow your gut until you get answers. Don’t let people make you feel like its all in your head. My life was severely impacted by this past year. As I look back I was in a depression that I couldn’t face. When it comes to your health don’t isolate yourself. Talk about it! Others have faced similar things and my female cousins were facing some similar issues. SO YES DOCTOR there is family history! The more I talked the less alone I felt. The more I learned about nutrition and about options for food that I never knew about. Write in journals your symptoms so doctors can’t say it’s in your head. Keep movement in your life! Pilates is truly a low impact exercise with so many modifications for how you are feeling. The movement was such a big part of my journey back.
You Are Not Alone
This past year has been tough not only not feeling well and a restrictive diet but the journey to find answers was mentally draining. Feelings of I am just a number and move on. Feelings of I am crazy and making this up in my head so let’s just get over this poor me and keep moving on.
You are NOT ALONE!
This is not in your Head!
You are NOT Crazy! So don’t give up!!!!!
You may be close to getting your Autoimmune Diagnosis!