The Fabulous Life of the Chronically Ill

 

After a busy start to summer with a lot of weddings and travel, I'm feeling the need to re-establish a routine.  I have learned the hard way, it is extremely difficult to stick with a routine when thunderstorms, extreme heat, or the slightest pressure change can derail your plans.  Good thing the weather in Kansas City [Kansas & Missouri] is always so stable and perfect (that's sarcasm for those of you who do not know me that well yet)!  The first thing on the agenda is addressing a spike in pain by picking back up from where I left off with doctor appointments on my journey to reduce my overall pain levels. Here is a glimpse of my life with invisible pain, come along to one week of doctor appointments with me:

 

Tuesday:

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I was refereed to a new Acupuncturist when I began care about 2 months ago with an Integrative Medicine Doctor. Part of her list of recommendations was doing acupuncture, and with an open mind I happily obliged. 

Acupuncture is;

- an ancient Chinese medicine practice

- based on balance and restoring proper flow of energy to the body

- small needles are placed along meridian lines, which represent the body's organs

- Needles are left in for about 15-20 minutes 

This was a new patient appointment, so we spent the majority of our time doing introductions and reviewing medical history. My acupuncturist was wary of over stimulating my nervous system or possibly triggering pain because I have a "pissed off nervous system" and I am "accustomed to pain".

He did:

Neuro-anatomical Acupuncture, which works by reeducating the brain and nervous system, and actually incorporates modern scientific evidence.

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Auricular Acupuncture, or Ear acupuncture, this normalizes the body's response to dysfunction through stimulation, which again he went very gently on me, especially at my initial appointment. 

I will follow up twice a week for three weeks, and keep ya'll posted on how it goes! Follow the first appointment, I felt a slight decrease in the pain we targeted. It stormed a few hours after and then the weather became severely humid and hot, so it's very difficult for me to discern a base line of pain and what triggered it. 

What questions do you have about acupuncture? 

 

Friday:

In physical therapy I get dry needling as part of my treatment. Dry needling is different than acupuncture;

-based on modern Western medicine

-needles inserted into trigger points or tender bands or muscle within bigger muscles 

-requires an extra certification

The purpose of dry needling is to reset the tissue to build strength in new ways. When a trigger point develops from poor blood flow, dry needling can be done to disrupt the tightness and increase blood flow which decreases toxicity. Dry needling targets a specific dysfunction to resets neuro-input and the cellular dysfunction of tissue.

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At this appointment we addressed two trigger points in either side of my jaw. We usually work on my back but I have had an increase in facial pain so my physical therapist focused on my jaw. The right side had a trigger point that was so “charged” without any conduction it was moving on its own, simply from static electricity. That’s a sign that this muscle was very tense and is an example of what a "pissed off nervous systems" means, ready to react to any environmental stimulus or trigger. 

People don’t seem notice my persistent droopy eyelid, also called ptosis, however, my right eye has a tendency to droop or contract and it has been an unsolved mystery since my migraines were first chronic. It's subtle enough that it doesn't interfere with my vision but of course I notice it. No doctor is really sure why this has developed but it is a common symptom of migraines. It’s been speculated by my physicians that (potential) EDS and Hypermobility have relaxed those muscles, I've also been told it could be some nerve palsy¿?, or long term strain on the referring muscle that weakens the areas around the right eye, which is another reason the trigger points in my jaw are an area to target in treatment. 

On top of Migraine and Hypermobility Syndrome (HSD) and EDS, I also have TMJ and Trigeminal Neurologica and constantly manage chronic facial pain and sensitivity because of the multiple pain conditions I have. My muscles are always pretty tender and achy, and I’ve developed knots and trigger points throughout my face, head, neck and skull because my body is constantly under strain. Since I am working to relax my jaw tension with dry needling, I am incorporating mirror exercises with my jaw. This is simple, all I do is lay down and hold a mirror or phone and guide the way my jaw moves so that it opens evenly.

 

Friday Afternoon: 

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I had an Audiology appointment. Paul took off work early to be with me because I have been particularly anxious about this appointment. We went to the appointment and they conducted a hearing test on me, my hearing was normal! The Audiologist did note that my ear drum was VERY hypermobile. Normally the pressure is measured at .10 and mine measured at 3.0! She explained that this can cause hearing loss but did not for me and that it's actually and indication of chronic ear infections, stretching the walls of the ear. I had chronic ear infections growing up, which is something I am exploring with my integrative medicine physician. 

I have been in total denial and putting off going to this appointment but I have been loosing my hearing off and on, super periodically, accompanied with dizziness, for about a year now. I noticed this mostly after my lumbar puncture and because I was feeling so much better I preferred to ignored this super scary symptom. For a while it only happened occasionally when I was bent below my waste, but as it persisted I noticed that almost every time I worked out and anytime I climaxed that my hearing would fade out and I would get dizzy. When I explained this symptoms the Audiologist reassured me that a lot of girls come in with these symptoms. This prompted her to screen for Semi Circular Canal Dissonance. My test came back normal but she's still suspicious of my right ear and wants me to follow up with a specialist and repeat the hearing test after a month of me keeping a journal on the details of my hearing loss.

So while it's great that I don't have permanent hearing loss, it's still not explained why I am losing my hearing and that means more appointments. 

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Going to weekly doctor appointments is part of my pain management treatment. It is time consuming and emotionally exhausting. A lot of information is thrown at me and I tend to leave with more questions than answers, it can be an emotional roller coaster. I do a lot of research and reading before and after my appointments and do my best to stay on top of each treatment, this week has been a little wonky despite my efforts to maintain a routine. I've been narrating each of these appointments in my Instagram stories but I thought it would help to put some of the more technical information here with a timeline. I talk about how I dread new patient appointments, why I  think the pain scale is inaccurate, and how I combat emotional exhaustion and feeling 'sick' after doctor appointments. I've added these to my highlights, under INVISIBLY ILL and I also plan to write separate blogs on each sub topic, please reach out with questions and comments for what you want me to follow up with and anything you would like to see me write about, I LOVE hearing your feedback! Thank you for all your sweet, understanding, and encouraging DMs this week! 

 

To keep everything in perspective I always highlight a few things I am thankful for:

- I am thankful for what my body has been able to do as I am getting busier

- I am endlessly thankful for Paul who is always SO supportive and takes the time to be at my appointments even as work is busier and busier for him

- I am thankful for a break in our busy schedule and a chance to regroup 

- I am thankful that I am able to see my physicians for pain management

- Thankful for Drake's new album which was my soundtrack to and from each appointment

 

Hugs to my migraine family and cheers to the close of a great #MHAM!