Saturday, July 15, 2017

Preparing for Surgery

Once again I find myself preparing for an upcoming surgery.  This is another hip surgery, I had the other hip surgically repaired last year so better know what to expect this time. I am not really afraid of the surgery itself this time. I also already have most of what I will need for recovery. In some ways I was both over-prepared and under-prepared last time.  There will be some changes this time.

I wrote previously on tips for recovery from surgery (some overlap of information presented here), and that it is as much mental and emotional as physical and the same applies to preparing for surgery. I do not get too nervous until the day or night before. Even if it is a repeat procedure, I usually still do get a little nervous the day before.  I also usually do not sleep at all the night before surgery.  I am struggling more with the mental preparation this time. This is not because of surgery--almost looking forward to it at this point with how challenging the hip has become.  It is because of being in transition--with lots of things.  I prefer things stable during recovery, but this time facing lots of major changes. Working on finding a way to create stability in the midst of the craziness.  This is a mental/perspective exercise.

One of my favorite photos. 

Post-op aids. This time, I already have crutches, walker, shower seat.  I did not have a shower seat last time until over a week post op.  But, having had surgery on one arm a few years ago, had learned how to shower only using one arm, so after the hip surgery, stood on good leg, supported myself with one hand on wall of shower, leaving one arm/hand free.  It worked, but not ideal, and the shower seat was a welcome aid once I got it. I am most definitely not looking forward to being back on crutches. I recall counting down days until I could be done with crutches last time, and I am closer to being back on them now than when I was counting down getting off then. At least this time, I know how to use crutches already, unlike last time.  I found this helpful video by the Nebraska Medical Center, but not until after I had been shown things by PT.  Currently, I am choosing to enjoy my final days of "freedom." This time, I will need a hip brace after surgery, thus need to be fitted for the brace.  I did not need a brace last time.  So, this should be interesting. Curious to see how the process goes, curious to see how I feel about the brace.  There were times last time, I thought something to prevent wrong or excessive movement might have been nice, but not having a brace meant being more mindful of how I moved, which in the long run I think was better. So, not sure how this will go. The surgeon told me I'd need the brace ~2 weeks or until I was "sick of it."  I thought about asking what happened if I got sick of the brace the first hour, but decided that was probably not a good question to ask.  I was told the reason for a brace this time is the EDS--the brace provides extra stability during the early healing stage.

Other supplies. I have a stock pile of waterproof bandages (to allow me to be in the pool early!), my regular "safe" band-aids (I have adhesive sensitivities, these usually work, but last time reacting to these as well by the time I no longer needed to cover incisions), all of my ice packs in the freezer, the water bottles used in the ice machine all in the freezer, jugs of chilled water for the ice machine in the fridge, have the ice machine drained and ready to go (have gotten way more than my money worth out of it as used it post-op several months last time, then for other hip, both shoulders, neck, back, etc.  Incredibly helpful for icing at night to save getting up to get ice pack(s) from the freezer, which then more fully wakes me.

Zero gravity chair.  I know I mentioned this in the post on recovery.  But, I found the chair helpful pre-op both times, plus immediately post-op and it is one of the back-up options for bed depending on how things go with the move.  A body pillow fits nicely and makes it really comfortable.


Rehab aids. I have a fair amount of basic items already from being in PT so long and doing exercises at home.  I am latex sensitive so have to have latex-free therapy bands. I also have a thick exercise mat, yoga ball, small weights, etc.  I knew in advance last time that stationary bike would be part of rehab.  For bike, I had to be creative.  Initially, I'd only need it a few minutes at a time 2-3 times a day.  Not worth trying to get up and down two flights of stairs with crutches to get to the gym, so really needed something at home.  Discussed options with PT.  What I came up with, and PT OK'd, has worked well for me and my situation with small apartment, small budget.  I ended up with folding bike pedals that just sit on the floor.  Then, because of trying to avoid too much flexion at the hips, I sit on a tall bar stool (~30") rather than a chair.


My "bike" set-up

Medications.  With surgeries, the surgeon prescribes what is needed for after surgery  However, I have enough other issues that require medications, that I also make sure that I have refilled any prescription medications, have enough over the counter medications and supplements to last until able to run errands again. Additionally, over the counter pain killers can be used along with narcotic to aid in needing less narcotic, or assisting with managing earlier without narcotic. A caution with over the counter pain medications and narcotic pain killers--if the narcotic contains acetaminophen, it is best not to take any additional acetaminophen.  I have managed chronic pain long enough that I know how to stay within the daily maximal dosing for acetaminophen with extra over the counter acetaminophen with acetaminophen-containing narcotic, but this is something that has been discussed with prescribing physicians in the past and they are aware I know the limits for acetaminophen and how to stay within them. I was off narcotic really early with both of the last two surgeries, hoping to be able to be off pretty early again, but will have to see how things go as prior surgeries it took weeks.

Meal preparation in advance.  I have done this with every surgery.  It looks a little different every surgery. However, with each surgery, I do emphasize protein and lots of vegetables both pre-op and post-op. I did make granola bars again. I also did some crock pot cooking, but less this time. I find I am not hungry the first few days--presumably due to anesthesia effects?  Thereafter, feel as if always hungry. Thus, I tend to make sure I have nutrient dense snack options available for the early days. Then, once hungry again, back to normal meals plus snacks as needed. Surgery and recovery are not a time to try to lose weight  Ideally, weight should be kept stable a month prior to surgery and at least a month post-op.  Even if someone has excess weight, losing weight close to surgery is not a good idea as the body needs to have the resources for healing.  After surgery, the body is using so much energy for healing, that even though not moving much, I still was always hungry even though eating well. Another aspect of food/nutrition for post-op is countering effects of anesthesia and/or narcotic pain medication in terms of constipation.  Narcotics do not affect me at all, anesthesia does and to the extent that I have yet to figure out a strictly dietary approach and need stool softeners at first. However, plenty of water, fiber (veggies, whole grains, legumes, etc.), probiotics in some cases, etc. can help.  I am on probiotics already in anticipation of being put back on antibiotics for surgery.

Finishing projects and getting things to a good stopping place.  This applies to work, school, moving, or whatever happens to be going on.  I like to have things either completely finished up, or at a stable point.  This take pressure off of me to try to get back to tasks right away.  This then lets me take the time to rest and focus on recovery initially.

Someone to help after surgery.  Help is essential at first. My sister has offered to come be with me for surgery and stay the initial days afterward to help me. She helped after my last hip surgery and I am so grateful she is willing to help again! We (mostly she) figured out systems to help things go more smoothly and help me be independent earlier last time and we have decided practice makes perfect (we hope!), so hoping this time goes even better. This time, I have arranged to have help the entire time after surgery until the move out-of-state. Last time, I was on my own earlier, but with the move, want to make sure I am not trying to do things I should not be doing. (Such as climbing up and changing the battery in the ceiling mounted smoke detector by myself at one week post op last time....)

Comfy, easy clothing.  I suspect this varies person to person and by season.  I lived in shorter tank top dresses after surgery last summer except for PT, then shorts and t-shirt. I also had supportive, slip-on shoes for early on when getting socks on or shoes tied were challenging. (The brace is sort of throwing me for a loop as not certain of what clothes will work best with it. However, I figured things out last time, so can figure things out again.)

Surgery planning.  This is not referring to the details of the procedure itself, but managing medications, other conditions, etc. in context of surgery.  Conversations with surgeon and team, anesthesiologist, primary care physician, physical therapist, etc.  This is the same surgery, but other hip, same surgeon, same surgery center, etc. So, we all have been through this and know I did well last time. Clarifying some of my unusual (complicating) factors and how is best to address them or work around them during surgery. The recent diagnoses of Ehlers-Danlos Syndrome and Mast Cell Activation Syndrome have ramifications for surgery.  These have been discussed and plans are in place. Grateful for a team familiar with these conditions and how to address them!  My bigger concern going into this surgery is that I am not on prednisone, as we are pretty sure in hindsight the prednisone is why my past two surgeries/recoveries went really well when none of the prior ones did (suspecting MCAS related).  The recommendation/plan is high dose steroid burst prior to surgery. Hoping this works as well as chronic low dose prednisone did the last two surgeries. Choosing not to worry about if it does not--will deal with that as it happens if it does.

Safety issues. "Crutch-proofing" prior to surgery--making sure rugs are picked up to avoid tripping from a crutch catching, making sure plenty of space to maneuver with crutches and even more space for a walker, etc. Any cords out of the way to avoid tripping. Funny thing, is some of the rearranging I did last time never got put back to how it was before. I am not one to do a lot of rearranging or reorganizing.  Once I have a system that works, I keep using it--if it is not broken, do not fix it. Surgery necessitated rearranging, but then got used to that system, so did not go back--at least not fully.

Physical preparation: aka "prehab." Last time, PT helped me work on core strength (I was just months post op another abdominal surgery), glute and hip strength, shoulder/arm/upper body strength in preparation for being on crutches and not able to move normally for a while. This helped me go into surgery really strong, which in turn helped with early rehab. So, we are currently still rehabbing first hip, but also again working on making sure I go into surgery as strong as possible. With the uncertainty of timing of when my my bed gets moved or what options after it gets moved, we have worked on how to get to/from the floor early after surgery. This is something I was told last time not to even attempt at first, and took me 2-3 weeks to manage. With PT's direction/assistance, I am surprisingly strong for as many physical limitations as I have. I laughingly consider it as training for surgery. I know others who are training for marathons, or various other races, and I train for surgeries. This is only a temporary shift in perspective. Normally, I am training to survive life. Goal is to get back to thriving again versus just surviving. Life with chronic illness is essentially a marathon--journey, not a race, though.

Back to concept of mental/emotional/physical preparation--each surgery I try to cerebrate what I can still do before surgery, knowing I will lose it after surgery, but can regain that ability again in time and with work. I prefer to do pretty much everything I can the day before surgery for one last time before letting it go. However, with local pools being closed, the timing of travel for surgery, uncertainty of how hotel pool will work for swimming, etc. not sure if that will work this time. So, I considered yesterday my final day just in case nothing else works out. I am still planning to stay as active as I can these final days of relative ability.

It has been overwhelming at times, and I am sure will still be so for a while.  However, it has been exciting to see God going before in so many ways.  He has been providing help and encouragement along the way.  Prayers for the surgery and recovery are greatly appreciated!

Copyright © 2017 by Steph. All rights reserved.

Saturday, July 8, 2017

Medically Complicated

I have been told I am medically complicated by every medical provider who has ever provided care for me. I guess, that means at least I am consistent?  Anyway, Facebook Memories provided an interesting view from over the years. (There are fun memories as well, it is not all medical.)

This is from one week post-op hip surgery a year ago:
But by the grace of God I am what I am, and his grace to me was not without effect. No, I worked harder than all of them—yet not I, but the grace of God that was with me. 1 Corinthians 15:10
STEF-ONLYBYGRACE.BLOGSPOT.COM

Mayo Clinic trips over the years:
I am back at Mayo Clinic again. The appointment this morning seemed to go really well. They have me scheduled for several more appointments and testing. However, not all the appointments are for this week. I am going to try to move all the appointments up to this week if at all possible. However, this is dependent on Mayo having cancellations.
Please pray that I will be able to get all appts moved up, or that I am able to figure out all the other schedule conflicts if not. (Next week I have 2 classes and 8 other medical appts in Ames that will need rescheduled; or conflicts the end of the month for a couple other Mayo appts.)
Prayers would be greatly appreciated! I travel to Rochester, MN tomorrow for an appt. at Mayo Clinic. Travel is difficult for me, so prayers the trip goes smoothly are coveted. Also, I have not found anyone to go to the appt with me. Please pray for mental clarity for me that I am able to grasp all of the information I am given and also that I am able to clearly communicate all that is necessary to the physician(s). Please pray especially for me that I will be able to advocate for myself and also be able to accept whatever the outcome. I am so hopeful for answers and help, yet so apprehensive as no one else has been able to find answers or help.

I am grateful for the care I received from Mayo Clinic; however, they never figured anything out. They ruled out a lot of different things--some had been suspected, others not even suspected prior. They missed some major clues.  I saw numerous specialties: Gastroenterology, Neurology, Cardiology, Gynecology, Endocrinology, Sleep Medicine, etc.  But, no one ever thought to see if they could connect the puzzle pieces. Confirmation of a connective tissue disorder years later finally connected all of the pieces. In some ways the diagnosis simplified matters--one diagnosis explaining many symptoms.  In others, it further complicated things--there is no cure, just best attempts to manage symptoms.  I prefer to view it all as a challenge, something to learn how to manage well...some day...hopefully.

Copyright © 2017 by Steph. All rights reserved.

Monday, July 3, 2017

One Year: I Did It!

I am one full year post op from left hip surgery!  This was the time frame I had been told at minimum for full recovery.  I never allowed myself to think anything less than a year.  So, when I was back to pretty much full normal ability around 6-7 months, I was thrilled and relieved and excited!  I ran into a flare ~9.5 months post-op after compensating for rapidly worsening right hip.  But, otherwise, the left hip is doing well.  Last appointment with surgeon, he cautioned me to expect it to take closer to 1.5-2 years to fully recover with each hip--I did not think at the time to ask him if this is because of the Ehlers-Danlos Syndrome, or because of both hips being involved, or a combination thereof. Regardless, it honestly does not matter to me as long as I know that my body can recover and do so well. My theme for this recovery has been that this is not a race to see how fast I can recover, but a journey to see how well I can recover.  It is worth taking the time to let my body recover the best it can. My only regret regarding this surgery was not getting it done years earlier. But, that is not something I had any control over. I am just grateful I finally was able to have it done and that recovery has gone so well.

A year ago, I went into surgery still semi-functional in spite of severe limitations and pain, and came out pretty helpless and needy.

Barely awake after surgery. Pleasantly surprised with how little pain!

I compared early recovery to infancy--almost completely helpless, could not walk, stand, sit, crawl, or roll over, and I woke every few hours even through the night, but slept the majority of the time. I even had "tummy time" as part of rehab. I regained ability far faster, but still similar in many ways to early developmental stages of infancy.

The pool has probably been the single item I used most through rehab and relied on most.  I could still do things in the pool even when unable on land.  Being submerged in water decreased all pain. I had asked before surgery and was cleared to be in the pool early after surgery.  Early on, I could not do much but just being in water felt good and gave me a break from crutches.  When we ran into issues with non-op hip interfering with rehab, PT had me do things in the pool as I could do more in the pool than on land.  That way she kept me moving, kept me progressing in spite of challenges.

Here I am a year later, having been told year at minimum for full recovery.  Am I fully recovered? Probably not.  I was back to pre-hip issues ability for the most part before seven months post op, but the hip is still more prone to flares, there are limits for how long I tolerate some things, etc.  Also, at last appointment, surgeon told me to expect it to take 1.5-2 years each hip for full recovery.  For now, I am very grateful for how well things have healed thus far. I was back to walking an easy four miles in an hour, going to yoga class, Pilates class, even a little running at PT or in the pool.  I had gotten to try whip kick with breaststroke and it went well....with post-op hip, not so much the other.  I pretty much got back to full ability with most things I had done before hip issues.  I have since lost a lot of that ability because of the other hip, but it was so good to be able to get back to them for a while and to see that my body is capable of recovering back to old ability.  I am swimming at pre-hip issues ability or better, so that has been encouraging to have retained something I can do even with other hip getting worse. Surgery on my other hip is in just a couple of weeks, so I will then be starting over again.

I am grateful that the hip has healed and regained ability so well. This in spite of compensating for a painful other hip the vast majority of the past year. I subtitled this post, "I Did It," and there is a huge sense of accomplishment for not only surviving the past year, but coming through it as well as I did. However, I would be remiss not to credit both my surgeon and his team as well as my physical therapist.  There is no way I could have gotten through this year without them and their treatment, support, guidance, and care.  There is also no way I would have come through as well as I did without all of the support and help from my family, friends, and so many others.

I had anticipated the early days after surgery doing various quiet activities- crocheting, reading watching movies, coloring, etc.  However, I had issues with blurry vision most of the first week, and by the time vision cleared, I was totally on my own and self care and rehab exercises literally took all of my time in those early days (still napping a lot).  Once able to do more, I was back to studies. So, I never did most of the hobbies or things I thought I was going to do after surgery.  I did start another baby afghan the morning of surgery.  I eventually finished it, but this is the longest it has taken me to crochet a baby afghan.  I think it took me longer because I was doing other things after surgery, and most of the crocheting took place in the car to and from Minnesota for surgeon follow-up appointments. (I was not the one driving!)



God has faithfully carried me through a challenging year.  So much has happened. Hip surgery and recovery were only one part. However, they have been intertwined with all of the rest.  

Copyright © 2017 by Steph. All rights reserved.

Wednesday, June 14, 2017

Invisible Illness

What is invisible illness?  It is medical condition(s) with no obvious outward indicators. So, what does it look like?  Normal.

Example:



I am in a massive flare of everything and really do not feel well.  When able, I rest.  When I have to be somewhere, or do something, I go into performance mode and somehow manage to appear as if I am normal, nothing obviously wrong.  I had to give a presentation.  The setting was such that t-shirt, yoga pants, and tennis shoes (what I wear probably 99% of the time) were not ideal.  Also, I do have a few outward indicators right now--with being off all anti-inflammatory medications and all antihistamines.  My face is red and blotchy from reacting to something unknown. I have the bruises from failed attempts and the finally successful IV from a week or so ago on my arms, plus my arms have hints of rash as well.  I have a low grade fever.  I limp.  Most people have the luxury of just deciding what to wear that will look nice.  I start there....but also keep in mind what will be comfortable, what will hide the more visible issues, etc.  I ended up with a long sleeve soft knit shirt (long sleeve to cover bruises and rash on my arms), soft knit maxi skirt (cover all of legs which have hint of rash, and also turn purple if I stand in one place too long), scarf, I actually wore make-up (rare and sometimes react to it as well), and I wore comfy flat shoes (but still supportive).  But, what no one knew was the make-up was to help mask the blotchy red face and I chose a blue scarf to bring out my eye color rather than my more typical bright pink scarf, which would have drawn more attention to red, blotchy face. (I use red or pink to add color on days that I am so tired that I am pale. Today I was running a low grade fever as well as reacting to something, so had no need to add color, but more to tone it down or distract from it.)  I also had compression shorts on underneath the skirt as low back, hips, all surrounding muscles are flared up and painful.  I was also maxed out on all medications I can take and timing of the stronger pain medication had been such as to make sure at peak effect for the duration of the presentation.

I was told the presentation went well.  The biggest distractions were the technology issues that presented themselves.  Technology issues no longer fluster me the way they used to do, possibly because I am fighting bigger battles?  My mouth was terribly dry from muscle relaxant side effect, but I had brought my water bottle with me and just sipped water as needed.

Once home, I took the above photo to document that I can still dress up and be presentable even when in pain and miserable, but then changed into t-shirt and shorts--pulled regular shorts over the compression shorts. Also, back in tennis shoes prior to PT appointment later. I survived another day of pretending to appear normal.

This post was actually written late in the semester--during "dead week." Things are still not going well, I am still barely hanging on. I can still mostly hide things, but it is largely from isolating--no one actually sees me to know how bad it is.  Earlier in May one of my doctors saw through it and asked if I was doing OK--sort of, not really, but will eventually.  Asked if I had resources?  Yes, and I will be OK with time even though things are very challenging. Some days I do OK, but more often it is nearly impossible to sit, stand, or walk and I spend most of the day lying down.

I can do all this through him who gives me strength. Philippians 4:13 (NIV)

Copyright © 2017 by Steph. All rights reserved.

Thursday, June 1, 2017

11 Months: Preparing for Round Two

I am 11 months post op from surgery on my left hip and just recently saw my surgeon again, but for the non-op right hip this time.  Of course he checked left hip as well and it is doing well, no concerns. Although left hip is doing well overall, it is a bit sore/flared from compensating for a very painful, limiting right hip  We are not making much detectable forward progress as just trying to retain what strength and ability I have in spite of right hip not handling sitting, standing, walking, etc. The right hip is essentially similar set of issues as left was pre-op. Thus, we are now planning on surgery for my right hip.  This is not a surprise, but rather has been more or less suspected since around two months post op, but we were uncertain how I'd rehab from first surgery, if second hip would calm down, etc.

Thoughts on second hip surgery. I am not sure what to expect as I was told this time may be similar, or may be either easier or harder than last time.  A year ago, left hip was horrible--injection had worn off, but surgery not until July 1.  Right hip was starting to catch and was more painful than simple compensation seemed to explain.  But, I was afraid of hip surgery, hoping left hip scope was last surgery--at least for a while, and determined right hip was going to get through OK without surgery--refused to even consider it might need surgery. Although, gut instinct was it felt too similar to left.

Fast forward a year.  Left hip is doing great, surgery recovery has not been easy, but much easier than anticipated.  Left hip was pretty much back to normal ability a few months ago!  Then, injection for right hip wore off and it was back to misery.  I lost optimism of avoiding surgery on it, asked if MRI worth it in February--yes, but it took until April to be able to get it done.  By then, limping again, even on crutches one evening.  MRI confirmed the suspected labral tear, but also found a few surprises.  My initial reaction to thinking of another surgery was frustration to be facing such a major surgery again as we had just gotten me back to pretty much normal ability with left hip. It was so nice to be able to walk, sit, do things. Another surgery would knock me down again for months.  I knew pre-op last time that it was going to take time recovery and regain ability.  It did.  But, as I thought more about it, I then chose to look at things differently.  We had me back to full ability--my body had proved it is capable of healing from major surgery in spite of various complicating factors.  If it could recover well once, it can do so again. Then, as my right hip continued to worsen, I became more limited again, then left hip flared up, and I was losing ability again. Surgery became something I was hoping for and as soon as possible to try to help get things dealt with and allow me to regain progress again even if slowly.  I am no longer afraid of surgery as I have been through it, it was not as bad as anticipated, and has helped beyond what I had expected. I went from fearing and trying to avoid surgery, to hoping surgeon would recommend it and wanting to proceed ASAP.

There will be a few changes in how we handle things this time.  Even though my body is still the same, having confirmed the Ehlers-Danlos Syndrome, and still strongly suspecting Mast Cell Activation Syndrome, more precautions will be taken.  This includes greater support during the surgery itself, as well as more precautions afterward.  I am grateful for a medical team who knows how to handle these issues to support me for optimal outcomes!  Now, to figure out how to survive the next several weeks until surgery.  Prayer is greatly appreciated!

Copyright © 2017 by Steph. All rights reserved.

Tuesday, May 9, 2017

10 Months

This post is delayed a bit.  Things have been crazy on the medical front, plus finals week and wrapping up yet another semester.  I am now a little over ten months post op from the left hip surgery. This has been a challenging month for multiple reasons, including a flare in the left hip that had been doing so well.  I had a sneaking suspicion when I finally acknowledged it was consistently doing well, that something would happen.  The hip itself is still doing well, but the muscles surrounding it have been pretty sore and irritated.  Timing suggests that tapering anti-inflammatory medications irritated right hip further, then combination of stopping anti-inflammatory medications completely plus limping/compensating for right hip contributed to flare of left hip a week or so later. Left hip is calming down now, right hip is still worsening, I think.  Honestly, trying not to think about it, but it keeps intruding upon notice.

Left hip is still far better than before surgery, and I am still so grateful for how well it is doing and what it can do.  Right hip is hanging in there.  It can be pretty miserable and limiting. Activity has taken a hit in terms of what I can do, how long, intensity, etc.  But, I can still move and do some things. It has been discouraging to go from being back to "normal" more or less, to being really restricted again. But, it is what it is. Just grateful for what I can do.

On the plus side, shoulders seem to be doing better for some unknown reason!  I can actually swim laps on consecutive days again and pace is getting faster again.  No idea why, but grateful and will take any improvement in anything at this stage!

There is a ton going on, but I am still processing, so not ready to comment much on things at this point. Just grateful to have survived another semester, survived another massive flare of all symptoms (and without a full blown crash!), starting to feel as if working back out of the mess somewhat. Focusing on getting through each day a moment at a time.  Curious about the future, but trying not to worry about things at this point.

Matthew 6:25-34
"Therefore I say unto you, Take no thought for your life, what ye shall eat, or what ye shall drink; nor yet for your body, what ye shall put on. Is not the life more than meat, and the body than raiment? Behold the fowls of the air: for they sow not, neither do they reap, nor gather into barns; yet your heavenly Father feedeth them. Are ye not much better than they?  Which of you by taking thought can add one cubit unto his stature?  And why take ye thought for raiment? Consider the lilies of the field, how they grow; they toil not, neither do they spin: And yet I say unto you, That even Solomon in all his glory was not arrayed like one of these. Wherefore, if God so clothe the grass of the field, which to day is, and to morrow is cast into the oven, shall he not much more clothe you, O ye of little faith? Therefore take no thought, saying, What shall we eat? or, What shall we drink? or, Wherewithal shall we be clothed? (For after all these things do the Gentiles seek:) for your heavenly Father knoweth that ye have need of all these things. But seek ye first the kingdom of God, and his righteousness; and all these things shall be added unto you. Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof."

Copyright © 2017 by Steph. All rights reserved.

Sunday, April 23, 2017

A Diagnosis Finally!

Those who have read my ramblings on chronic pain and invisible illness over the years, are aware that there has been a lack of diagnosis for most of what I live with, and not for lack of trying. However, each time we hit a dead end, we focus on managing things the best we can until things change or new issues appear.  I honestly got used to not having a diagnosis for the pain and most of the other issues, and have never really liked labels anyway.  Thus, as long as we could keep me relatively functional a diagnosis was just a name, nothing more.  After finding what works as a miracle drug for me (prednisone) and using it for a couple of years, we regained best control we have ever had of many of the random issues.  However, each attempt at tapering leads to return of symptoms.  I "crashed" again last fall and have been struggling more ever since, even after getting me pulled back out of the crash itself.  This led to more questions, more evaluations, and finally, an actual diagnosis!  Still hard to believe.  For having come to terms with and accepting never having a diagnosis but still always having pain, fatigue, other issues, it seems odd to finally know why.  Things suddenly make sense, too!  All of the random, seemingly unconnected symptoms are very much connected.  The connection?  Connective tissue disorder.  I was diagnosed with classical Ehlers-Danlos syndrome (EDS), a genetic connective tissue disorder.  This explains most of the numerous random, previously unexplained symptoms.  It is such a relief to finally know, also validation that I am not crazy and that my body is not making up miserable random symptoms.  It really is just screaming for help.

Additionally, there is strong suspicion of mast cell activation syndrome (MCAS), but this still needs to be confirmed via testing.  MCAS is essentially a hyperactive, dysfunctional immune response.  If confirmed, the MCAS explains my numerous sensitivities to so many things as well as my unusual response to prednisone.  In fact, MCAS would explain all of why prednisone helps so much even in absence of autoimmune issues.  I am still being checked for autoimmune issues as well--testing still pending as I need to be fully off prednisone and a few other medications first.

Although finally finding out about the EDS has been a huge relief and helpful, it has also been overwhelming and a lot to process through.  I am not entirely sure why.  I had looked for a diagnosis for years, had finally given up and accepted a few years ago there likely never would be a diagnosis, and now there is one.  I know it caught me by surprise.  I had honestly expected EDS to be ruled out. I knew it was one of the suspicions, but there were also several other things we were looking into. However, a physician familiar with EDS easily found my numerous characteristics. There were so many "aha" moments during the appointment as things that have never made sense finally fit into place.  Things I was aware of but not concerned about were also explained, things I had thought were normal, were discovered in fact not to be normal.  The diagnosis explains things going way back into early childhood. One possible reason this is a struggle is that it confirms this is lifelong, that there is no cure, etc.  I had already accepted pain was a lifelong condition with no cure, but there had still been room for the slightest hope that maybe someday things would be better.  This diagnosis removes that hope entirely.  However, it provides another hope--that with understanding what the root issue is, we can learn how to better manage things.  Hope is essential to managing chronic conditions. Overall, I am relieved and grateful to finally have a diagnosis, to finally understand more of what is going on with my body, to be able to better direct treatment approaches.

God has known all along what was going on with my body.  He has been giving wisdom to know what to do, and in His timing has started revealing what the actual underlying conditions are.  It has been hard at times to trust when feeling as if blindly treating unknown conditions and random symptoms, but it has taught me to trust in spite of what seemed like impossible situations. Although things seem overwhelming now, He is still with me, still going before, will still give wisdom along the way. I need to continue to trust.





"My God, I have never thanked Thee for my 'thorn!' I have thanked Thee a thousand times for my roses, but never once for my 'thorn;' I have been looking forward to a world where I shall get compensation for my cross as itself a present glory. Teach me the glory of my cross; teach me the value of my 'thorn.' Show me that I have climbed to Thee by the path of pain. Show me that my tears have made my rainbow."  George Matheson






Psalm 139:13-16 (NKJV)
For You formed my inward parts;
You covered me in my mother’s womb.
I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well.
My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the lowest parts of the earth.
Your eyes saw my substance, being yet unformed.
And in Your book they all were written,
The days fashioned for me,
When as yet there were none of them.

2 Corinthians 4:16-18 (NKJV)

Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory,  while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal.

2 Corinthians 12:8-10 (NKJV)

Concerning this thing I pleaded with the Lord three times that it might depart from me. And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.  Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.

I wrote the majority of this post a month ago.  However, I chose not to post it at the time, rather let myself have more time to process everything.  I actually found out I have EDS over spring break. Break did not feel anything like a break (not unusual), as I was mentally trying to process the diagnosis as well as fighting new, acute issues.  I know the diagnosis and the timing of finding out were all in God's plan. It is such a relief to finally have things make sense and no longer feel is if my body is totally crazy. There is still a lot we are trying to figure out in terms of additional diagnoses, treatment plans, and better management approaches.  In the meantime, with stopping medications for more testing, things are not well managed at all, so things are incredibly challenging at present. Prayers are greatly appreciated.

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