Diagnosed with a chronic disease at 25 and riding is difficult

[bumknees]

I to am late to this. Hope you have another room mate or even better home now.

I have had my fair share of weird medical problems. I now refer to them as another attempt on my life from my own body. Every 20 yrs like clock work… Cant wait to see what the 60’s bring… <not>

I have been dx’d with dystonia which may have been caused by a surgery I had in the early 90’s. BUT the dr’s are not sure even though they ran all the tests available to them. The oculd not get me into the MAYO clinic to have the one test they did(maybe still do) not have. Dont recall the name of the test but they were backed up with that one test about 4mths. And by that time some things had changed. To many to go into…

The kicker is ths past May I was d’xd with what hte Drs thought at the time to be Polycythemia vera… ol yeah try saying that 5 times fast… For those whos latin is as rsty as mine was it litterally transluates to poly= many cyt= cells hemia= blood then vera was the name of the guy who ‘found’ this wonderful thing. Last name I assume…
this was exactally 20 yrs to the day that the last attempt on my life was made by my body that required some major major ( had to sign paper work so dh and family could not sue or anything should I die on the table) aren’t I the lucky one…

Since then it has been redx’d as Essential or Primary Thromboscytosis Or thrombosicythemia which ( and my latin memories are not that good) means I make way to many platelets, white blood cells and red blood cells. It is a not so distant cousin to Lukeimia(sp).

I went to the Dr because I got tired of having one hand and the diagional foot actually the fingers and toes in pain to where it was to painful to hold a peice of paper. The pain had been there since Nov 09. and it had begun out of the blue it just started while making thanksgiving dinner… So now also have the tag of Neuropothy(sp)

A year ago I would take an asprin for the 24/7/365/ for 20yrs headach… And not much else… Now I take 20 pills a day… It sucks really it sucks a lot.

But as my dh says 'look on hte bright side the pain in fingers and toes is gone ( masked)… And you are not going to drop over dead this year…
Oh yeah I should explin that one… The Polyscthemia and hte thrombosicythemia are what are classfied as ‘non fatal cancers’ IF ( big huge hugumungus IF) the person gets dx’d and begins treatment with in hte first 2 yrs of onces of symtoms… My firts symptom was itching when I got out of the shower… I marked it up to hard( very very went through like 4 bags of salt a month hard) water… I itched in places I didnt know I had… that was 1 yr and 7 mths prior to my dx… The ‘experts’ say that once dx’d a person can lead a 'rather normal life of about an additional 10 or so years." as long as they remain on the treatment ( at this time there is no cure for either) So basically unless I am very lucky or a ‘cure’ is found I have an addition 10 yrs of life expectancy…

Sorry didnt mean to be a downer…

I do hope all is gong well for you…

[Vegas_Sky]

It’s amazing to come on here and read the stories people share. It’s so inspirational. It reminds me of my new favorite saying: “If you say ‘I can’t’, I will smack you.”

OP, I’m very glad the surgery went well! Praying for continued healing for you and a better roommate! At least this one is temporary and you’ll soon be back in the comfort of your home.

Godspeed.

[Zu_Zu]

Healing and Getting Home Jingles ~

Healing Jingles and Getting home Jingles too ~

In the mean time an order for a new roommate ~~ :eek: so sorry your roommate is TERRIBLE ~

[SFrost]

Well, I am happy to report I am home now. There were no rooms open that night as of 6pm so I was trrrified that I would have to stay in there with that terrible woman.

By the grace of God one of my doctors brought a high up attending with him to see me. Said attending told me he felt I could go home as long as I was comfortable with it. After assuring me I would likely not keel over (knock on wood) I could finish my recover at home. So, they let me go.

I’ve been home a few days and am slowly recovering. I am just glad to be home. I honestly thought the few days after the surgery I was done for. It was the single most painful thing I have ever been through.

My stent removal is the 4th. Fingers crossed this one is a breeze. They tell me it is.

I still have not been to the barn to see my horse but I am sure he is doing well. I am going to try to go out there tomorrow to see him and resist the urge to ride. Although, I am not certain how successful I will be. Ha!

[EqTrainer]

So glad you are home. Rest now.

[Invite]

Happy to hear you are home. Please resist riding until you know you can safely do it. I don’t want you back with the evil roommate!!!
Ride safely and have a blast once you’re able!!!

[DancingAppy]

I agree with resisting riding until you get the doctor’s okay. After surgery, even though the stitches may be healed, you’re body isn’t completely healed. As my surgeon said, it really takes one full year for the body to be completely healed after major surgery.

I had my surgery this year June 2nd. So it will be 7 months in January. I still haven’t started even working with my mare. I see her, pet her, but no handling. Where my incisions are, one wrong move and they can rip back open. :no:

You don’t want to set your healing time back by rushing to fast to get back riding.

[Nanerpus]

Just going to chime in here, OP:

Pancreatitis SUCKS. I had an acute case when I was 23 (I’m 26 now). It runs in my dad’s family. Brother has had one AP too. Nothing since, but it was scary and terrible.

I suffer from arthritis in my hip from having a septic infection as a baby. I know what you mean about chronic pain.I had about 8 reconstructive surgeries before the age of 10, and probably am not done. I also suffer terribly since several years ago from dry eye syndrome, which makes anything outdoors with wind or dirt, like riding, nearly impossible most days - even with goggles.

Back to the pancreatitis - You WILL find a supportive routine for your pain. I hope your next surgery is a success as I’m sure it will be, and in the meantime, why not try to go out to the barn for just 15 minutes, and groom your horse or toss him into the ring to freelunge. Enjoy the surroundings and just go at your own pace.

I feel terrible you are suffering from pancreatic pain so much. The 5 days I was in the hospital to rest my pancreas were horrible. I have severe anxiety almost daily that I am having another attaack, and have been to the ER to get my blood levels checked and be seen 4 times because I’ve felt a familiar “twinge” and have worried it’s coming back.

Best, Best Wishes

[Nanerpus]

Whoops! Just saw the second page and read you are home and recovering. Fantastic!!!

[EquineImagined]

I hope you were able to get out to the barn and had a good holiday! It can be hard, I know, to stay out of the saddle when you start feeling better. I made the mistake of getting back on a horse four weeks after an emergency c-section. It felt great at first, but I was down for the count for two days afterwards.

Feb 2009 I suffered a stroke, it damaged the portion of the left side of my brain that controls feeling on the right side of my body. After a week in the hosp (fortunately I only had a roommate one night, but I feel your pain on the terrible roomy issue!), I was sent home. They told me I could expect some feeling to return, but that I would have to relearn everything, and while they encouraged me to use horses as part of my rehab (brushing, hand walking etc as I relearned how to ‘feel’) to not expect to ride. It was heartbreaking.

I gave it a month, and as I stopped toppeling over when my brain did not recognize my foot was already placed, bearing weight and would keep trying to put weight on it, I told my doctors to stuff it and I got on. Had to take it on a day by day basis. Some days I was up to it, others I would fumble the lead rope so bad I knew it would be disaster if I got on. By June I was trail riding, September I was showing. Most days no one has any clue anything was ever wrong and now the doctors attribute having picked horses as my therapy to that success, it was something I stuck through despite the difficulties and frustrations at not being able to do things I’ve done essentially my whole life. My body knew what it was supposed to do, it was just a matter of figuring out how to feel when it was doing it now. They also believe just the movements of the horse was benificial.

Now, I’m back to riding as often as my body can handle it (have a grocery list of other problems, most from a lifetime of punishing my body with physical activity), working around the farm, on symptomatic days when I relapse I do what I call the zombie shuffle around the farm.

In your case, I think it may be a day at a time deal, too. You just have to learn your limits and to know which days you’ll be able to ride, and which days are better to just spend time with your horse enjoying eachother’s company. One thing my stroke really showed me was how even if I wasn’t riding, just being there with the horses was good for me (and them!)

It’s easy to get discouraged when you can’t, or are told you can’t, do the things you once did, but carry that head high! There were times I wanted to give up horses, came very close to it, but looking back I would have hated myself for it. We adapt, and over time there’s no telling where that can take us. Trust your heart, and trust your horse. Even if you have to change the direction of your journey together, usually it is well worth continuing it! There will be ups and downs as with anything, but we’re equestrians, its what we do and who we are. Wish you all the best in your recovery, future procedures and of course with your riding. Keep the updates coming!

[SFrost]

![]( really want to thank you guys for sharing your stories. While I never want anyone to have to go through tough times like these I am glad to know others out there have been there and understand.

I am feeling okay. Some days are better than others. I had to go in to the dr today because I have a strange bump on my hand from one of the IVs. Plus, sometimes it feels like my hand is falling asleep. They tell me it is fine though. So, who knows.

I have gotten out to the farm a few times to see Snake. He is just as fat and happy as ever. I am paying someone at the farm to exercise him a few times a week so he doesn’t turn into hell on hooves.

Christmas day I decided to treat myself and hop on for a short ride. So, I threw on the bridle and off to the ring we went. He was a bit energetic at first but he seemed to catch on quickly I couldn’t take any silliness. We trotted a bit and it was wonderful. He is such a good guy.

I am amazed on how he seems to know what I can and can’t handle. Knock on wood, he has only thrown me once in the 5 years I had him. (Which, it was my fault I bit the dust, not his. I mean really, if I haven’t jumped 4 ft in 10 year why on earth would I be able to on a whim? For the record I made it over only to fall off a stride after landing.) He is really great about if I get off balance or something hurts he will stop or readjust his body. What a great guy. Here is a pic of him:

[IMG]http://i294.photobucket.com/albums/mm100/SFrost29/100_1039.jpg)

[IMG]http://i294.photobucket.com/albums/mm100/SFrost29/BlueVest023.jpg)

I go in to get my stent removed on the 4th. I am told this should be outpatient…So here is to hoping for no hospital stay. I pray that things will start to look up shortly after that. I am not certain how long it takes to feel results though. I know that I am still feeling the pain of the last acute attack, so we’ll see!

I hope everyone has a great new year!

[DressageGeek_Ribbon]

First, I really think they know.

Second…just as you would be cautious with rehabbing your horse, you should be cautious with yourself. There is so much you can do out of the saddle.

Here’s hoping everyone has a HEALTHY 2011

[SFrost]

Okay…tomorrow morning I go get the stent in my pancreas taken out. So, no cutting this time, just a scope. I just hope that it is uneventful and easy. They claim it is outpatient this go round…I just hope that holds out to be true. After this I hope I recover quickly and get some “normal” back in my life. Maybe I can ride again soon.

And, when I feel better I am buying a new saddle. I think I have been through enough torture that I deserve it. And, hopefully if I feel well enough a trip in February as well.

[SFrost]

Wooohooo! I spoke with my doctor yesterday after my ERCP and he told me to get out there and ride my horse as soon as I feel better from the ERCP. In fact, he thought it would be the best thing for me.

I guess I will just have to start slow and take it easy on days my pancreatitis is really bothering me.

Always good to get the green light to ride.

[myvanya]

Congrats! Lots of jingles and happy thoughts for you!

[tradewind]

That is terrific news, glad things have turned the corner. Just don’t overdue and strain another body part. Your horse is stunning by the way!

[SFrost]

[QUOTE=tradewind;5345540]
That is terrific news, glad things have turned the corner. Just don’t overdue and strain another body part. Your horse is stunning by the way![/QUOTE]

Thank you!

I’ve been riding a bit here and there. Sitting the canter is a bit much still. Two point is way less jarring so I have been doing that. My poor legs!

[Invite]

Yay!!!

I’m so glad you’re feeling better. All the 2 point might make your legs hate you a little bit, but it is so worth it to be riding again. I am truly happy for you!