Diagnosed with a chronic disease at 25 and riding is difficult

[SFrost]

Recently I was diagnosed with chronic pancreatitis. I’ve had many bouts of bad abdominal pain since I was 16 but I was always told it was anxiety and IBS. Nice, huh?

Fast forward 25 years later. After a year of bad pain, trips to the ER, countless tests and surgery to remove my gallbladder someone finally decided to do an MRI. Long story short with that, I was sent to Johns Hopkins because I have Pancreatic Divisum which has lead to chronic pancreatitis. Well, a surgery to open up the pancreatic ducts hasn’t helped much. So, I am now looking at yet another surgery.

These are done via ERCP. They land me in the hospital for days, drugged out of my mind and in terrible pain. Even after I recover I am still going to have pain issues.

Clearly, this all makes riding my horse very difficult. If I am not in pain I am just so tired that it makes even going to the barn difficult. I know there is light at the end of the tunnel and that sooner or later I should have some sort of management system. It is just getting there. The doctors tell me to do what I can and are trying to be supportive although I get the impression they are not thrilled with the thought of me riding.

I’m feeling depressed and angry that I can’t ride like I used to. I have even thought of selling my horse. I love him dearly but I am lucky if I ride him once a week. I have thought about a half lease but I don’t like the idea of that type of legal liability. My horse is at a wonderful barn and he is well cared for, but he does like to have a job.

I guess I am just looking for some advice on people who have faced situations like this. I’m still trying to cope with the fact I have a chronic disease. Some days are better than others. It is just very overwhelming.

[tradewind]

I will tell you that I have suffered from pancreatitis, it blows, and mine was acute, so I only dealt with it for a year. They never did find out why, which was really frustrating. To be in the kind of pain that I know you are in, is very debilitating. The only advice I can offer is to follow your doctors eating or lack there of instructions religiously, it really does make a difference. Once they can get your pancreas to calm down, and the pain eases off even a bit, you will have more energy. I still have occasional twinges and then I do the pancreatic “diet” of no hard to digest stuff, mostly liquids etc to get back on track. Hugs to you, and best of luck!

[sayyadina]

I still don’t know what’s wrong with me, but I totally feel your frustration about not being able to ride. I haven’t been able to ride at all for over a year, and many days I don’t even have the energy to do ground work. When I do feel well enough to go to the stable, I mainly do ground work (free lunging & free jumping) with my 2 girls. I also have 2 nice DVDs about trick training that I really want to try out, but I haven’t felt well enough.

I WANT to ride so badly, but I can’t. Sometimes I get very angry/frustrated/depressed. I just try to do what I can when I feel well. There’s a lot you can do from the ground. There are some really great books/DVDs out there about groundwork, but I can’t remember what they are at the moment.

I hope you feel better soon.

[SFrost]

Thanks for the responses. I do follow my diet the best I can. Every now and then I cave and have something that I love, but not often.

It is just a very difficult balance between my limitations and fairness to my horse. (Or what I think of as fair. I am sure he is happy to munch on grass all day.)

[Invite]

I still lack a solid diagnoses, but I do have 3 definite diseases, Myoclonus, Dystonia, and Peripheral Neuropathy. I still have some questioning MS. I don’t have any lesions, but I have yet to have a doctor do a lumbar puncture. OOOO, I almost forgot…ischial bursitis, too

I was doing great. Walking with a limp and wearing a brace for my wrist drop, but in August, I car ran me off the road and the physical trauma caused all of my diseases to kick in. I spent 6 days in the hospital b/c I couldn’t stand on my own. I’m doing better than I was, but I still cannot ride.

I see my horses daily and groom them. I push myself to do more each day. I will often go to bed at 6pm and sleep until 9am! Those are the days when I know I have spent too much time in the barn!

Since I was 15, I have been dealin with this off and on. It literally tears my insides apart knowing I can’t do what I love. I’ll be 33 on Monday and I have to live with my parents because I often require so much assistance.

To keep myself in the dressage mode, I read books and magazines. I study the new USDF tests. I am planning on ordering dressageclinic.com. I figure it’s cheaper for one month of Andreas’ videos than it is to have one lesson. I also watch videos.

I try to stay upbeat, but it doesn’t always work. The more upbeat I am, the better I feel…maybe that is actually the opposite. I just try to stay out of the “why me?” mode, as that just brings me down!

[Bluey]

I feel very sorry for those of you that are younger and have serious health problems that keep you from doing what you want.
I was lucky to spend a lifetime working with horses and just now, past 60, to have hit a rough spot, although not as rough as some of you.

I too would like to take off where I left and go back to riding and training, that is easy for me, not hard work.
BUT, scheduled for shoulder surgery, had to postpone that as I had serious abdominal surgery last April, then a few weeks ago gallblader surgery, a snap as surgeries go, I know, but walked in the Dr’s office the other day with two broken ribs, one broken in two places and he had a hard time not laughing, saying over and over “after the year you had, now this?”:lol:

Yes, it is silly, broken ribs just hurt when you walk, breathe, eat, can’t lay down, so sleep in a recliner for days on end, etc. but are laughable, they won’t kill you, compared with serious health problems as some of you have.

The shoulder surgery? Maybe next March, if something else doesn’t comes up before that.
This wait a little bit longer, it will be fine eventually, doesn’t make waiting any easier, does it.

I call this stretch of health problems to have a black cloud sitting over me raining and my umbrella keeps getting holes in it.

I know it is easier for me to sit and wait “at my age”.
I hope those of you young’uns can soon get back on your feet and out to enjoy your horses as you wish.

[Jay-N-Jete]

I was diagnosed with Rheumatoid Arthritis at 23.
Spent 4 years barely getting through work and going to bed at 5pm right after work.

Finally knocked the disease back enough through a combo of chemo and biologic meds to get back in the saddle 2-3xweek.

At 29, I had a really bad riding crash, which caused Traumatic Brain Injury, lost my memory.

MRI also found that I had Thyroid Cancer. Went in to get Cancer removed and failed my heart tests.

Got an emergency Pacemaker due to Heart Block (the bottom half of my heart doesn’t get the message to beat and I faint - thus the riding crash)

Was out of the saddle for those 2 surgeries for 8 months, BUT felt better than ever with my “new” heartbeat!
Got to riding 3-4xweek.

Most recently, I haven’t ridden for the past year (age 33) with a really bad flare up of the RA. Went back on the chemo and biologics.
Then shattered my thumb and broke my foot in 2 places…

Due to my Ra (hands and need a hip replaced), I needed to find a new horse who is very light in the bridle and not very wide… So I had to give up my great little TB who needs about 5-8lbs in the hand, as well as, my trainer’s horse who is light, but tooo wide.

My trainer found me the perfect new mare 4mths ago and just (finally) had my first “ride” on her last weekend! My friend gave me a walking pony ride on her!

I’m scheduled to be allowed back to riding in March…

I also have peripheral neuropathy, chronic vertigo, daily chronic migraine, raynaud’s disease, dupytren’s disease, and chronic memory problems to go with all of the above.

My advice:
Get the best team of doctors available to you
FOLLOW THE RULES - whatever yours are
do your therapy or homework
Listen to your body - if it says you need rest- then rest!
push yourself each day for something tiny and enjoy it
keep your brain active
Watch for and treat depression
take your meds as prescribed
stay positive - find small things to take joy in
Learn to enjoy your “new” life
Good luck!

[Bluey]

Sounds like you also have a leaky umbrella.:no:
May want to add to your list: Get better patching materials.

You know what is the best anti depressant?
The word “horses”.
Don’t let it become a word that means bad things, like what I can’t do.
To know they are out there and some day we can again go do whatever we want with/on/around them.:yes:
Even if it is only watching them with someone else riding them, that “horse” word can get our spirits up.

[Equilibrium]

OP. If you can afford it, don’t sell your horse. Even if he is only around for you to enjoy on the ground, so be it. Dont feel guilty that he doesn’t have a job at the moment. Just tell yourself he will one day soon. Concentrate on you at the moment and it will work out. You may need him more than you think.

To all of you who cope with all this big hugs and as Bluey days above, the word horse is a good healer. Keep them with you when you can.

Terri

[DancingAppy]

I was diagnosed with Hidradenitis Suppurativa when I was 19, but I have symptoms since I was 12. When I was 17, I needed surgery to remove a rather large (think grapefruit size) abscess from my buttock (Now, that I’m a little older I can laugh about it but at the time it was so embarrassing). At that time, doctors said that I should quit riding. I didn’t listen to them and was riding again 3 months later.
At 19, I had an another abscess, this time on my tailbone. It became so painful, I had to quit riding. I haven’t ridden since. Over the next two years, to keep my horsey spirits up, I sought out help to teach myself and my mare how to carriage drive. I finally got there where we were going well and having fun… And another abscess. This time in my armpit. It was so painful I could not exercise, carriage drive, nothing. I had surgery on it in July. The abscess caused nerve damage to my hand, which is finally getting better, but I don’t have 100% function of my arm due to loss of skin. (My armpit was removed and then surgically reconstructed out of excess skin.)
I will admit, it’s hard, not being able to ride and can be quite discouraging. I love driving, but I honestly feel I would be more passionate about it if I could a least ride 1-2x a week for 30 minutes. No doctor has given me a GOOD reason to not at least do that so I’m on the lookout for a trainer to do small lesson’s with who will take in consideration my special needs.

I think the hardest thing was other riders at my barn not understanding why I didn’t ride. Many believed it was because my horse was “crazy”, she may be hot but she’s not crazy! They just didn’t understand that I can’t. :no:

I also agree with the don’t sell your horse. My horse may have sent a good 2 out of 4 years standing around, but she’s my lifesaver sometimes.

[Wayside]

[QUOTE=SFrost;5250799]
(Or what I think of as fair. I am sure he is happy to munch on grass all day.)[/QUOTE]

:yes:

I also have chronic health problems, Ehlers-Danlos and Fibromyalgia, and I have to remind myself of this very often. My horses are happy to see me, and glad to get to work, but they really don’t mind hanging out and eating. They really don’t care that we won’t be showing PSG, or whatever it is that I think they could be capable of with a better, healther rider than me. They measure success in the moment, and much differently than we do. “Ooooh, I found a tasty bite of alfalfa! Win!” :lol:

[OneGrayPony]

I don’t have much in the way of advice, but I’ve got jingles for you feeling better. I thought I wouldn’t ride again either, but mine was because of fear, instead of pain. I too, considered selling my horse, deliberately avoided all things horsey and generally sank into a fear and self-loathing funk.

Now, a year later, I am SO glad I didn’t.

jingling for you

[DressageGeek_Ribbon]

As the saying goes, “Those also serve who only stand and wait.”

Horses are the best therapy sometimes. Just watching them roll and feel good.

To all who are fighting against so many odds, I wish you the best.

[SFrost]

Thank you all for sharing your stories and your words of encouragement.

I do my best to not be overwhelmed by all this but at times it is just hard. Thankfully, at this point I can afford to keep my sweet boy. I honestly don’t know what I’d do without him in my life. I mean, who would try to steal water bottles or other objects I need in order to get me to laugh.

I have asked my barn owner if it is possible to hire someone to ride my guy a few times a week when I am not feeling up to it.

I go in for another surgery on the 14th…Ugh…just a few days away. I am praying this will be the solution and that I will get ME back.

Again thank you all. And to those of you dealing with situations like this my thoughts are with you!

[Stacie]

I feel your pain. I have porphyria which causes, among other things, pancreatitis, (also lots of neuromuscualr problems). Nothing I can do about it except stay away from alcohol, certain drugs, foods and chemical, viral and bacterial exposures. I have good days and bad months, but the horses get me out of the house when I feel like crap and would probably just sleep. I am physical beyond what I would be otherwise and it keeps me healthier than I would be without them. I focus on riding with balance and finesse instead of using my muscles so much. Being sick has actually made me a better rider And of course, I just love being around them.
Keeping hydrated with the right electrolytes makes a huge difference. If you can, get someone to help on bad days. Having someone to go get the horse out of the field, pick feet and carry the saddle can save your energy for riding.
You may not believe it, but if the surgery works you will probably feel fairly normal once your body heals. Jingling that it all goes well.

[myvanya]

I’m late responding- hopefully you are recovering from your surgery ok.

Another younger (under 30) rider with RA (and a variety of fun things with it) here…I think you have quite a bit of advice and info here…so just jingles…feel free to pm me if you have any questions though as I am happy to answer but don’t want to be redundant or overwhelm.

[Vegas_Sky]

Another late poster, but I just wanted to offer my support and encouragement.

I was always a very physically healthy kid - healthier than most, despite my family history, which is enough to make any genetic counselor or endocrinologist openly weep.

My problems during childhood were related to pretty intense ADHD and Asperger’s Syndrome - a disorder my very small, rural school was not aware of, much less prepared to handle, and my parents were in denial that their youngest, most beloved genius child could be autistic. Thus I was not diagnosed until my senior year of high school. Dealing with these problems during my early years of riding (I started at 16) didn’t make riding more physically difficult, but it made learning about riding more difficult, and it certainly made social situations and barn drama a nightmare, to the point where there were days I just couldn’t go out there.

After some rough times the first couple years of college, I finally figured out what it means to be a responsible adult and I was doing really well. Then, my sophomore year I was diagnosed with Dysautonomia, which brings with it a host of problems related to a dysfunctional autonomic nervous sytem, but I managed okay, all things considered, until Thanksgiving time last year when I was hit hard with a gastrointestinal illness that, after six months of testing and procedures and elimination diets, they could only diagnose as IBS.

During the summer I started doing a lot better and was finally getting back to the old healthy me, and then the fall happened. Now I’m a 22 year old with a traumatic brain injury, chronic spinal and hip problems, IBS, Dysautonomia, and Asperger’s Syndrome.

I’m more fortunate than most - I do well in school with disability accommodations, I’ve learned enough social skills to function in society (most are completely unaware of my Asperger’s), and physically I can control IBS and Dysautonomia symptoms and deal with the spine problems enough to ride several times per week in addition to training for my other passion - marathons and triathlons. Does this mean that I don’t experience severe and at times debilitating pain? Absolutely not. I figure I just have a higher tolerance than others. I’ve killed my stomach, liver and kidneys with NSAID, narcotic, and muscle relaxer use and a very high sodium diet to keep blood pressure up. There are days that, despite the drugs, I can’t get out of bed. I constantly deal with people who don’t understand how I can have an IQ of 150 and still be cognitively disabled. I say the word “autism” and they think I’m either lying or that it clearly doesn’t bother me at all, since I seem to be so normal.

Is it a rough life? Yup. But oh well. What can I do about it? I could choose to sit around and wallow in misery at my misfortune, but that seems foolish. There are so many others who are so much more unfortunate than I am. I still have the ability to work and to improve. With the help of my physical therapist, I get stronger and fitter every day. The fitter and stronger I am, the more I find that my IBS and Dysautonomia stay under control. I have a great speech therapist who helps me with school and work strategies, and I have a great family and a group of amazing friends who understand how much of a disaster my life can really be. They help me and encourage me and cheer me on when I don’t think I can go any further.

The secret to life? Find strength in pain. Find hope in adversity. Find peace in tribulation. Faith, hope, and love are the greatest of all God’s gifts. Love someone or something unconditionally. This is the greatest medicine.

Others have said to watch for depression. I agree wholeheartedly. If you find it’s all too much, try medication. It can really help you cope. Stay active as much as you can, take care of yourself with good nutrition and time for yourself, and just keep up hope that there is a light at the end and we will all get there someday.

Godspeed my friend. I hope that you are recovering from your surgery well, and may time continue to bring you healing.

[Leena]

I feel for you.

Being too weak to walk to the barn…I know all about it.

BUT try…Yes, do what you can but remember…15 minutes with 1200 healthy pounds carrying you is 15 minutes you save from doing it.

Question your riding, be confident your horse is capable to carry you, learn to do less and obtain more…

AND I really hope that doctors will help you to find your way out if this !

Big hugs !

[SFrost]

Hi all! Well, an update since the surgery. It is said to have been successful but I am sitting here in the hospital as I type. I had major pain after, elevated WBC, rapid HR, the works. Really, they tell me it could have been so much worse, but I still felt terrible. I am doing a bit better and I hope to get out of here soon.

I am not sure what is worse at this point, my pain to the fact that I have the roommate from hell. Seriously, she is terrible. I can NOT get ANY sleep. Hopefully they will find me another room soon. Fingers crossed.

Thank you all again for sharing your stories and your words of encouragement.

[DressageGeek_Ribbon]

Here’s hoping today finds you much better and with a different roommate!