The road to a diagnosis of a chronic illness is paved with a lot of doctors appointments. I journaled the first year of that road through 2019 and early 2020.

The Beginning:

5/28/19: I was seen by Dr. Murray (internist) for my regular scheduled yearly check. I felt exhausted but other than that I was fine.

6/2019 – Seen at urgent care for fatigue and a blister type rash.  There they ran bloodwork to rule out Lyme disease and other conditions. All test were normal. I was given steroid cream and advised to keep an already scheduled yearly appointment with my dermatologist.

7/5/19 – seen at urgent care when I awoke and had lost use of my right hand. It was extremely swollen and I could not bend any fingers. 

7/8/19 Seen at dermatologist. Biopsy taken of blister rash. Results: hyper sensitivity to bug bite. I do not recall having been bitten by anything.

7/9/19:   I was seen by Dr. Murray for follow-up from my urgent care visit. I had swelling in my feet and hands and was extremely fatigued. Dr. Murray ordered lab work and preliminary diagnosis was to rule out lupus or RA. A referral to a rheumatologist (Dr. Perruquet) was given. Appointment was scheduled for 10/29/19.

715/19:  Labs from Antinuclear Antibodies result and are normal as well as inflammatory markers.

**Continued exhaustion and extreme pain. More swelling during this time. I knew something was wrong. Being “tired” should not feel like this.  I am bone weary exhausted and had never slept so much. I started researching and trying to find if there were any other lab tests that might not have been ordered and found that a CCP had not been ordered by Dr. Murray. I found Walk-in labs online and ordered a CCP. The lab order was faxed to Labcorp and I scheduled to present there the last week of July for a blood draw.***

8/2/19:   Received results from Walk-in Labs for the CCP that I ordered online. My results were <250. (Anything over <59 is a strong positive) Emailed Dr. Murray and requested that my referral to Dr. Perruquet be moved up.

8/6/19:  Seen by Paul Becton PA at Lucas Research for a pre planned screening and new patient exam for my insulin resistance. This had been scheduled since April. Labs were drawn and a follow-up appointment is scheduled for 11/11/19. Prescribed metformin.

-Metformin hurts my stomach and I cannot use this at work. 

8/5/19 Seen by Dr. Perruquet at CCHC. Preliminary diagnosis is early onset rheumatoid arthritis. Only two joints are affected at this time, my toes in my left foot and one hand. Prescribed hydroxychloroquine and advised that this medication is to be used to slow the progression of RA. There is no cure for RA, the only hope is to slow it down and keep it under control. If this medication does not work we don’t even want to talk about the next medications. ☹ Also given a prescription for prednisone. Greg went with me. I told Dr. Perruquent then that I wanted to “kick RA’s ass”. He was shocked and said ok and reminded me there is no cure. I just can’t allow myself to think like that.

9/30/19 – 10/13/19 Traveled out of state alone to care for my sick father. It was a very stressful time. I had a flare so severe it was extremely painful to get out of bed in the morning. At one point I lost use of both hands in one day. After dunking both hands in ice water buckets repeatedly I was able to get the swelling down enough to dress in loose clothing. 

Symptoms during this time. Fatigue, swelling of extremities, trouble concentrating and recalling names and words, painful joints, inability to get comfortable, extreme exhaustion, feeling down.

10/23/19  I see Dr. Kean, PA in place of Dr. Perruquet.  Medication switched from Hydroxychloroquine to Methotrexate pills. My inflammatory markers increased to 22.  Requested medication for antidepressants and was denied. Advised to follow-up with Dr. Murray if symptoms persisted and acknowledged that I had been through a stressful time with my dad. He did not feel that I needed anti-depressants. I feel like I cannot live like this.

11/11/19  Follow-up with Dr. Paul. Advised him that I cannot take Metformin. He switched me back to Trulicity and advised that unlike some doctors they do not require blood work every two months for prescription refills. Advised to start first month at .75 dose and increase second month to 1.50 dose once a week. Confirmed insulin resistance and thyroid seems to be stable. Continue with thyroid supplement as it seems to be working (Thyro-8)

12/10/19 – Seen by Dr. Kean, PA. c/o left foot pain so xrays were taken of my feet. Dose increased for Methotrexate. Now instead of 3 pills once a week, I am to take 6 pills on one day, once a week. Blood work was done. My sed rate was actually lower on Methotrexate. The increase in dosage is to account for the pain in my left foot. I was also given a prescription for prednisone to get me through the holidays.

1/13/20  – After a month on the increased dosage of Methotrexate, I am feeling better. If I step wrong or bump my left foot wrong, it is painful but as for the walking, I am able to walk pain free. Sometimes, I feel a fog-like feeling comes over me and all of my joints get stiff. This is usually toward the end of the week and the day that I take Methotrexate. Methotrexate causes flu-like symptoms and I feel exhausted, nauseous and horrible the day after taking it. It also causes insomnia. In order to balance this out, I take half of the dose on Saturday night, then sleep, then when I awake, I take the second half of the dose Sunday morning. By mid-day on Sunday I feel exhausted and horrible. I make sure to get 8 hours of sleep with Benadryl on Sunday nights and by Monday I feel much better. This is better than feeling so bad on a workday. It absolutely destroys our social life though. 🙁 

I am slowly learning what my new normal is. I have good days and bad days. I am well 5 out of 7 days of the week. I have to manage my sleep in order to feel human. Exhaustion hits really fast out of no where. I can literally crawl under a table and go to sleep anywhere when it hits. I am better than I was last summer though and for that I am grateful. I would give anything never to be in that dark place mentally again. The depression that comes with RA is real and it is terrifying. For someone who has always found reasons to laugh and enjoy life no matter the circumstances, this diagnosis and the depression nearly took me out. I cannot even begin to imagine the pain for someone that is not as mentally strong. I now understand chronic pain and fatigue. This is not something that I ever thought I would relate to. I guess God does place you in circumstances for understanding. I can now relate to people that I would have never been able to had it not of been through this diagnosis. It is not fun. I would not wish this on my worst enemy. But on the days I can drag myself out of bed without looking like something my cat coughed up and still go to work, I still am determined to fight my way out of this battle. 

3/2020  I advise my PA that the methotrexate pills are just not working for me. I am tired of feeling like I have the flu 2-3 days out every week. Dr. Kean advised me that a lot of patients have side effects to the pills but not injections. I am not really happy about taking injections. I already take one for my insulin resistance and don’t want to feel like a pin cushion. But I also want improved quality of life. That’s the catch. What will give me that? So I opt for the MTX injections. Now starts the battle with the insurance company. He gave me samples to try.

4/1/2020    BCBS wants me to give myself injections like with a syringe. No can do if my hands don’t work half the time! There is a prefilled injectable that I have been using so we opt for that. My doctors office takes on the battle to get it approved. BCBS approved the prefilled injectables. For $1200 per month! Uh no. That is the same thing as not having insurance to me. Not to mention with the pandemic that is just not feasible considering one of our sources of income has been cut off by the closures. So my nurse goes back to battle and got a Tier-3 exception. That brought the meds down to several hundred dollars per month, which is still not feasible for us. Greg told me we will find a way and that if I need the meds I will get the meds. But there still has to be a better way. My doctor gave me more samples while we fight BCBS.

5/2020    My doctors office fought BCBS and got my MTX prescription down to $125 a month and then got me a manufacturers coupon that covers $120 per month copay. My meds are now $5 per month! I was so happy I cried. The only thing stress wise that has saved me is that I am teleworking from home from my office job and this has kept my stress level down. God works out things in his own timing and this one is definitely a blessing. 

8/20/20  I am feeling great for the most part. My labs are good and my inflammatory markers are good. I am tolerating the MTX injections with no side effects. Hopefully this will work out ok. I keep in the back of my brain though that somehow, someway, there has to be a better way that injecting drugs into my system. I remember my essential oil training but I am just too exhausted most days to not take the easy way out. Getting myself into remission and then finding an alternative solution is my plan.