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.