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:

Stephanie Kratzer

July 8, 2016 at 9:08pm · 

http://stef-onlybygrace.blogspot.com/2016/07/one-week.html

Only By God's Grace: One Week

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:

Stephanie Kratzer

July 8, 2014 at 11:56am · 

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.)

Stephanie Kratzer

July 8, 2013 at 1:19pm · 

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.

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.

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.

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.

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.

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.

Copyright © 2017 by Steph. All rights reserved.

9 Months

Here I am nine months post op from left hip surgery, or three-quarters of the way through the year I was told at minimum for full recovery.  Things are still going incredibly well. I keep forgetting my left hip ever had issues, we keep trying things out of curiosity to see what it can do, and have yet to really find its limits. I can run a little bit, but have not done much as my body does not really like running in general, and my right hip dislikes running in particular.  Right hip still acts up, but each time it hurts with sitting, or walking more, or at night, etc. it reminds me that left used to hurt, but no longer does and has not for quite some time!

What can I do?  Pretty much anything.  What can I not do?  Really not that much. Crazy compared to early post op when so restricted and so little I could do and trying to find one new thing each day I could do.  I do still need to remember that just because I can do something does not mean that I should or that it is best. Now, I am consistently walking at old pace and distance, swimming laps, Pilates, careful yoga, running in the pool (can run on land, but non op hip does not appreciate it), left hip is fine to sit, stand, etc. All of this is pain-free! Pre-op, none of this was pain-free and definite restrictions for all. Right hip has definite limits for what it can handle.  But, I drove myself to and from MN not too long ago in one day and left hip did not even need ice!  Wow!  The rest of my body was not too happy with me, but I survived rather better than I expected.

I did have a PT appointment in MN recently as a sort of check after things had been iffy a few months ago, but she said left hip is doing great, right on track with expectations, and no concerns! Right hip is not doing as well, but that was no surprise.

Other challenges this month include still working on calming down the pinched nerve situation, new stomach pain issues, trying to mentally wrap my mind around new information in terms of diagnosing the underlying issues, a suspected cracked rib, the injection for my left shoulder lost effect, etc.  It has not been an easy month and I am so grateful that my left hip has continued to do well and even right hip has been somewhat calmer just from the amount of medication I have been on to deal with other new pain issues.

Overall, left hip is doing really well.  We are still working on strengthening it and addressing residual compensation issues, but these become less of an issue all of the time.  I think what has become the biggest indicator to me of how well things are going is the consistency.  Left hip is consistently pain-free and flare-free.  Left hip is consistent in what it can do and handle in terms of activity, sitting, standing, etc.  It is no longer the unpredictable mess of never knowing what it could handle.  Right hip is not at all consistent.  It has OK times, but it has very painful times.  It can handle things one day (or moment), but not the next.  This is more similar to left hip a couple of years before surgery or earlier post op during more intensive healing and recovery stages. As someone who has lived with chronic pain for so long I no longer know what pain-free is, no longer know what predictable is, it seems really odd, yet exciting, to have a pain issue actually resolve!  I do not think that has ever happened before.  I recall being really nervous about surgery and the possibility of it making things worse or not helping. I absolutely trust my surgeon and his team as well as my physical therapist, but do not trust my body. I have had such difficult surgery recoveries in the past, and my body is unpredictable in how it responds to so much.  My response to this surgery continues to surprise me.  So, so grateful for an excellent surgeon who saw through the mess that my hip was to what it could be and gave me the chance to get some semblance of a life back, for supporting me through all of recovery thus far, even when things got a little challenging a few months ago.  So, so grateful for an amazing physical therapist who is creative and resourceful and does not give up on me no matter how challenging things get. So, so grateful that my body has proven that when well supported and directed, it is capable of healing and recovering well from hip surgery!  So grateful!

Copyright © 2017 by Steph. All rights reserved.