The Pain and The Solution

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This past year has definitely been a roller coaster of emotions. Some good and some bad, as you can see in the Previous post “What This Past Year Has Taught Me“. However, nothing could prepare me for Christmas 2021 going from someone happy and health to being crippled over in pain throughout my entire body.

Everything was going great. I had two full time jobs and surviving on the little sleep that came with the constant busy work life. My goal was to do this for about 6 months, pay off bills and live without fear of debt riddling my life unmanageable financially. I didn’t have a life anyway so aside from living in sober living, I just didn’t really have much free time.

December 23rd rocked my world. I was dealing with progressively worse bouts with foot pain. Sometimes it would be when I get up in the morning, sometimes it would be by the end of the day. I knew something wasn’t right but I just ignored it thinking it would go away on its own. I have had flare ups before and they just go away after some time. I have arthritis that I was diagnosed with about years ago. I also have Raynaud’s and unspecified myalgia (whatever that is). So the combination of all three if working in sync can F U C K my life up.

December 23rd did just that. I woke up in the morning in excruciating pain coming from both hands and both feet. I went to get out of bed and was not able to walk or even stand. I looked down only to notice that my feet were swollen like balloons leaving them unrecognizable:

My room was on the second floor in the house and with no way to get down stairs, I felt paralyzed and powerless. Luckily some housemates were gracious enough to give me some water and Ibuprofen. After about an hour I was able to get up with limited mobility. I had to call out of work which was a very rare occasion for me. Finally making it down stairs I took myself to the nearest walk-in clinic. This was a 4 hour ordeal for them to finally call me back. Holiday hours and the increase in Omnicron cases did not play in my favor. They were able to give me a steroid shot and wrote me a prescription for Prednisone.

This seemed to do the trick for a while. I was able to move effectively and while I was still in pain, it was most certainly manageable. Christmas rolls through and it was back. It was clear that my body was unable to deal with the long work hours putting consistent stress on my body. I unfortunately had to give up one of the jobs. Though it was a job that I really cared a lot about, it was for the best. I stayed with the job that offered health insurance which basically made all the difference in my decision making on which job to give up.

Fast forward through Christmas and after the separation of my job I found myself stranded in my car. Not being able to move my hands from the steering wheel, not being able to get up and walk. Here I was sitting in front of whole foods. Hands gripped to the steering unable to take them off the wheel. The picture crossed my mind of Cruella Deville from 101 Dalmatians and her final war with the pups.

I took myself to Ally Medical ER. They actually had to wheel me in because I was unable to successfully stand up to get out of my car. They gave me another steroid shot and even more prednisone. The battle with this issue continues throughout the next couple months. I had honestly thought that by now, after so much time, the flareup would have ceased. However, this was not the case. I have now been on prednisone going on 3 months now and it has only gotten progressively worse. I tried multiple different types of therapy. Cryotherapy, Chiropractic and Acupuncture. Nothing seemed to work. I know what I had to do. I had to see a Rheumatologist.

The Battle Begins

The worst battle you have to fight is between what you know and what you feel

– Unknown

The first step, now that I had health insurance was to find a primary care physician. This was not really hard to do. I was able to get a referral from the ER so it was no time at all until I got that established. From the first appointment I knew that my doctor was the right fit for me. Aside from him being very attractive both physically and vocally, he listened. He wanted to figure everything out. What he couldn’t figure out, he was getting me in touch with someone who would. I received a large round of bloodwork and the office basically gave me a physical and explained what his plans of care were with me. This helped me take a deep breath and I knew I was in good hands.

The Referral

Next was the referral. He scheduled me with a rheumatologist for 3 weeks out. This was from the same practice, just up in the north Austin area. I was ok with it because I needed this pain and swelling to end and I needed to move on with my life. The doctor came highly recommended by the practice. My PCP also recommended him “highly” but he never actually met him before, nor heard anything aside from his title and location of practice.

The Appointment

The day finally arrived when I had my first consultation. This was going to be the start of something good. I just knew it. I show up 30 mins early and began to fill out my paperwork. The staff at the front were nice but robot like. I filled out the paperwork and waited patiently to be called. Finally after 25 minutes I was called back height, weight and vitals. The nurse immediately was very nice and respectful. However, she did seem new and flustered which was fine by me. I wasn’t here to see her. She took my vitals and all my other needed information and she gave word to the doctor that I was ready.

This is where my experience takes a drastic turn. The doctor comes in and I was already off put by his cold demeaner. It was almost like I was wasting his time. However, this was fine by me, I didn’t want him to waste my time either. I already had a diagnosis and they should have already had my records from the previous Rheumatologist back home as my PCP ordered for them to be released. All I need now is the medication. This was not the case with him. After explaining my situation and that I was already diagnosed with PsA (psoriatic arthritis) he began to say that he wasn’t sure if that should be the diagnosis and that further testing is needed. I knew this was going to be the game plan because it has been three years so a new round of tests were imminent. What I was not prepared for, was for him to completely reject the diagnosis previously provided. He stated that the medical records were not sent over and it would probably be quicker just to get started over again. Out of desperation, I conceded.

Upon his exit and over hearing him tell the nurse “tell him we will see him back in 3 months” I lost my mind on the poor nurse. Not at her, but more venting to her about my issues and how I can’t wait 3 months. I am pretty sure my exact words were: “So, in the next 3 months does he suggest I chop off my hands and feet off or jump in front of a bus, dealers choice” She brought him back and he stated that the nurse heard the wrong time. Stated that he said “3 weeks”. I know I heard this man say “3 months” but I was just glad he changed the timeframe. So I got my labs, my x-rays and left with more questions than answers.

The Results

The results started populating in my patient portal almost immediately. The x-rays and bloodwork were back in a matter of days. Eventually after around 2 weeks I ran out of prednisone and I was in a constant state of pain. I had zero intention on drinking, but if I did, now would be that time. I reached out to both my primary care and my rheumatologist for a follow-up. I reached out via the patient portal to see about getting either: extension on my prednisone or a sooner appointment to get started. This is when my attitude changed.

The Answer

The answer that doctor gave me was heart wrenching. My primary care office stated that I should have had enough and they cannot prescribe me anymore. The Rheumatologist stated that based on the bloodwork and x-rays, there was not enough evidence to show arthritis and he would not be prescribing me the medication that I actually need. He said I needed to come in on the date of the already scheduled appointment and he will put in a request for an MRI. I was furious. I told the Rheumatologist that I would no longer use him. I advised him that his bedside manner was horrible and his lack of empathy and understanding was infuriating. He was only out for the money. I wholeheartedly believe that to be true. As I picked up on it the day of that appointment. It’s hard to trust doctors these days anyway but it makes it real when you actually see the injustice for yourself. So I fired my rheumatologist and was back to square one.

The New Referral

Luckily my primary care listened to what I had to say about the experience and put in another referral. I asked if he could find the rheumatologist with the earliest appointment he could find. We agreed on one with an appointment time that has potential of 2 weeks out. This is contingent on the referral going through and the records being transferred over. After about three tries and three different fax numbers, it finally made its way to their office.

The Miscommunication

Unfortunately, this was not the end of the craziness. As luck would have it and not hearing anything back from the doctor I was referred to, I called them. Apparently, there was a mix up in the system. I had an appointment and it was for 2/22. The date was now 2/24, another crushing blow on my road to health. They had the wrong number on file so I never received alerts about this appointment. So, I missed it. I wanted to cry, this was after waking up hardly able to move, use my phone, drink, chew. She said that we would have to reschedule the appointment.

The Hope

Just when I thought that all hope was lost, a light at the end of the tunnel revealed itself in an amazing way. About the time we were rescheduling the appointment for a few weeks out, the nurse stopped and said: “This may sound unreasonable but would you like to come in at 1:45pm today? We just had a cancelation.” Before she could finish the word cancelation I immediately said “I’ll take it” She stated that the weather played in my favor but I know it was more than that. Whatever you believe, just know that something is out there helping us and I really don’t care who or what. I am just glad they are there.

When I get to the doctors office a little before 1:30p I started filling out the paperwork. It was nothing over excessive. I gave the nurse my insurance card and took a seat. It was a little past 1:45pm when I was called back. We got my weight and she asked me the normal questions. She then stated that the doctor will be in shortly. The waiting period was about 10 mins. I notice on the door there was a sign stating that all new patients must remove their shoes and socks. So I wrestled with the high copper fit socks so the waiting didn’t really seem like a wait. More like a intermission with a wrestling match between shows.

The doctor walks in with a colleague of hers. She introduced herself and the girl with her and stated that she would be her “transcriber”. Totally different experience from the air headedness of the previous Rheumatologist. She had a transcriber. Someone to document what was said and done. Someone to be held accountable to. She starts asking for my back story and I began telling her. Everything from the being overweight, to the rheumatologist back home, my experience with the one prior, the swelling and the amount of time I had to wait for this day, EVERYTHING. A far cry from the cold no care attitude of the previous doctor. I felt things were different. She starts the examination and it took her all but 5 seconds to look at my hands to say “you definitely have arthritis”. FINALLY, someone who listens, someone who sees, someone who knows. She is someone of understanding and compassion. She starts calling out swollen fingers and toes.

She stated that she has my records from the Rheumatologist back in Delaware and wanted to know if I was ever started on the medication that they had previously requested. I told her I couldn’t due to COVID and how they wanted me to get vaccinated before starting the medication. That after the vaccine, life changed and everything led me here. Then she said something that I did not expect her to say at the first visit: “Let’s get you one the medication”

The Solution

There was finally some resolution to this long awaited moment in time. This was something I didn’t know was possible. I felt myself losing hope for a normal life a little every day. Now, I have the answer I was looking for. I told her how grateful I was of her. She was someone that brought hope to my life. I was approved for treatment. Autoimmune disorders are nothing to take lightly. With this arthritis I went from being a normal person, being able to run every day, walk and stand for long periods of time… To hardly being able to walk, being on prednisone everyday which feels like a prison sentence. The resolution is here. The solution is just in my grasps

What’s Next

Next is just a waiting game. I have to wait to get the approval from the pharmacy and then schedule my IV infusion. This is something that will always be a part of my life. However, I am ok with it. I rather be on medication for the rest of my life but be able to function, then to become crippled and unable to lead a normal life. The next part in my life is just around the bend. The end of the joint pain. The start of my new life free from it.

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