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So, after an MRI and several X-Rays my doctor has determined that I have adhesive capsulitis.
I wasn't exactly surprised, but I'm really upset about it.
I've been having joint and spine problems since I was 9 years old. No medical professional has ever been able to tell me why. There is no name for my disorder. It's just lots of problems with my joints and spine- loose joints- which caused me to have shoulder surgery almost 4 years ago, bursitis and tendinitis in my shoulders and hips, deteriorating meniscus in my knee, carpal tunnel syndrome, and 5 (at last count) herniated discs.
I'm used to being in pain every day. But, I always held out hope that I would find something to "fix" me. I thought if I did enough yoga, or acupuncture, or massage, or stretching, that I would be cured. I'm all for putting up a fight, but this latest diagnosis has made me realize that I can not be cured.
I will struggle with this for the rest of my life.
That's really hard for me to accept.
I'm only 32 years old, and I'm already in so much pain. The doctors marvel at how my body acts like it is twice its age. (Adhesive capsulitis is rarely seen in people under 50.) What will I be like when I'm 62, or 82? The thought terrifies me.
Do you know how heartbreaking it is to have a doctor look you in the eye and tell you that you will be in pain every day for the rest of your life?
Every day tasks that most people, myself included, take for granted have become a struggle. brushing my dog, doing the dishes, putting my hair in a ponytail, driving, making dinner- these are all things that cause me considerable pain. I can't go bowling, swim laps, play pool, play darts, or go white water rafting.
It hurts every time I pick up my child.
That has been the hardest part of all of this for me- it is keeping me from being the mother that I want to be. Instead of enjoying every minute with my daughter, I'm counting the minutes until my husband gets home so I can have a break.
Being in pain makes EVERYTHING harder. What is a quick trip to the store for most people is a huge undertaking for me- carry kid down stairs- load kid into car seat- drive- open back of car (we have an SUV and the back is really hard to open and close.)- wrestle stroller out of car- lift kid out car seat- buckle kid into stroller- close back of car-push stroller- open back of car- put shopping bags in back of car- unbuckle kid- put kid in car seat- fold up stroller- put stroller in back of car- close back of car- drive- open back of car- get kid out of car seat- pick up shopping bags- close back of car- try to balance kid and shopping bags while walking up front steps and opening door. It all hurts.
Pain shatters your hopes and dreams. It takes the fun out of everything. It makes life more frustrating. It leaves little room for patience.
Pain is robbing me of enjoying my child. I'm so angry.
My husband has been so amazing through all of this. He's so supportive. It must be so hard/ frustrating for such a young, vibrant, active guy to be married to a woman who can't do anything.
His fellowship is not what we thought it would be. He is working so much more. A minimum of 60 hours a week. He's working 7 out of 13 weekends. He's working this weekend, which means I won't really get a break until next weekend.
It's been really hard. We can't afford a babysitter. He leaves for work at 6am and comes home at around 7pm. Then he gives Willa a bath and puts her to bed. He eats dinner and them does the dishes or whatever other chores need to be done. 2 out of the last 5 weeks have been spent on night float. This means he leaves for work at 7pm, works all night, gets home between 9-10am and sleeps all day. Those weeks have been really hard for me- I get no break at all. Whenever he gets a day of the week off (usually because he was working all night) he watches Willa while I get an acupuncture treatment. If he's around on the weekends there are a ton of chores to do.
Both of us rarely get a break. I feel really bad for him. I feel like he really deserves a break, but so do I.
He has ten more months until he is done with his fellowship. Ten more months until his salary increases so we can hire some help. I'm counting the days.
The most important treatment for adhesive capsulitis is lots of physical therapy.
We really don't know what to do about this.
I should be going to PT 2-3 times a week, but I have no one to watch Willa, and we can't afford to hire a babysitter. My mother comes and stays with us every once in a while for a week or two, but that's not enough.
For now I'm going to do some research and see what exercises I can do at home.
Flare ups of adhesive capsulitis last 1-3 years. 40-60% of sufferers have some permanent loss of mobility.
I know that there are people who have it much worse than me, and that I should be grateful, but it's really hard to look on the bright side when you are in constant pain.
I have become Debbie Downer.
I'm no fun at all.
I try to put on a brave face- to grit my teeth and smile through the pain, but it's becoming increasingly difficult and I'm tired.
Comments
You should search online for groups or forums of other people with this ailment. Maybe you can find some alternative medicine or a special doctor that may have some special insights.
I'm sorry to read about this. That sucks.
Posted by: Neil | August 27, 2008 12:00 PM
Shit. I can't even imagine. I've suffered back problems my whole adult life, so I maybe have some inkling, but. I just want to give you a huge hug. A very gentle one.
I know you've just moved, but I feel like there must be some way you can get some help. Inexpensive church daycare? A neighbor with a baby who could watch Willa for an hour? A homeschooling teenager who would do it for really cheap? I know if someone I knew, even just an acquaintance, was going through something like you are, I'd volunteer to watch her child. And I'd do it for nothing, but you have a tremendous skill you can offer as barter.
I'm sure you've tried everything already. I have this compulsion to help. I hope I haven't annoyed.
Posted by: Annika | August 27, 2008 12:01 PM
I'm so sorry, Torrie. I mostly lurk, but had to chime in on this one. I'm 33 and have a pile of minor chronic illnesses, and I totally understand your frustration. Have you heard about the spoon theory?
Check out the website But You Don't Look Sick and search for the spoon theory. It's the best way I've found to describe how I feel. It's not a babysitter, but maybe having your frustrations validated will help.
Posted by: Mandee | August 27, 2008 02:46 PM
I'm sorry, Torrie. I've been there and I know it sucks. It's ok to not have a brave/happy face all the time - this is your place to vent and seek support. I wish I could help you physically deal with all of this - but I'm just an email away if you want to swap pain management tips or just vent.
Posted by: Keely | August 27, 2008 03:40 PM
STOOOOOOORRIE!!! I wish we lived closer. I could watch her. I want you to go to PT.
Posted by: Ange | August 27, 2008 04:27 PM
I am not a frequent commenter, but I had to say how sorry I am for you Torrie. Not that it does anything to help you, but I am so sorry. I too have had muscle/joint/back problems since third grade and now at 29, move slower than my 76 year old grandmother. (It takes me longer to get out of bed than her!) The past 8 months have been the worst physically of my life my body hurts so bad that even clothes hurt. Doctors are baffled and on top of all of it I have had ulcerative colitis for 11 years. Chronic pain all around. Well, actually my liver works pretty well, but that’s about it. And I do try my best to keep it working out. I am getting married in the spring and am still trying to talk him out of a wedding because I don’t have the energy and strength to plan one. And I’m afraid he is going to leave me because after I come home from a day of sitting in the same uncomfortable position in my uncomfortable chair I have to lie down, I never want to do anything. My body is worthless. I just want to sleep on weekends because I am so worn out. He has two children from a previous marriage who I love like my own and I don’t have the energy to play with them when they are with us on the weekends. How do you explain to a six and seven year old that you still love them, you just can’t play with them because your body hurts too much? It scares them. I have decided not to have kids, because I know I couldn't take care of them. Anyway, this wasn’t to whine about my pain, just to let you know there are others out there like you, because it seems like you seem really alone right now and you feel helpless. And knowing that others are in pain obviously can’t make you feel better, but hopefully it will help you from loosing hope. I don’t know you, probably never will, but I am so sad you are in this situation.
Thanks for that website Mandee, the Spoon Theory is great. Nothing like crying at my desk to prove I am really not working! I emailed it to my close friends.
Now I have made up for never commenting by blabbing incessantly…. Sorry!
Posted by: Carrie | August 27, 2008 04:43 PM
http://podolsky.everybody.org/rsi/
I hope that link is correct. If not, google John Sarno out of NY.
After 3 and a half months of not walking and healing my foot, my hands have inexplicably gone completely numb and my arms weigh a ton. I sleep 3 hours a night and then my hands wake me up. I dropped a knife on my toe, things just fall out of my hands and sometimes I dont even know it.
Ive gone to docors my whole life for scoliosis related bone and back issues and I will say this, 2 out of 3 drs are wrong. Even now, when I asked what caused the carilage to disappear out of my ankle the dr. didn't know but charged me 15K to fix it.
Putting on my shoes would go viral on youtube because it takes so long to put them on and I swear A LOT.
research Sarno.
Posted by: Suzy | August 27, 2008 09:33 PM
I'm weeping for you because I don't know what it's like and I can't even really imagine but I am just sad and hope that SOMETHING GOOD happens for you all soon.
I know that's really nothing but it's all I've got:(
Posted by: Farrell | August 28, 2008 12:11 AM
I am also mostly a lurker, but I just had to say how sorry I am for you. My Mom has sciatica and a herniated disk and Dr Sarno's method really helped her. I'm 31 and have always been active and then I got tendinitis in my ankle that is just not going away, even with PT and lots of meds. We are now trying custom orthotics. During the treatment for the tendinitis I got a herniated disk which flares up at any time and basically has prevented me from doing all the activities I love, especially in the summer. Your condition sounds much worse, but I do empathize! Just a suggest: If you can, you should try to barter your skills/talents for baby sitting. Just an idea! Best of luck. I really hope you feel better.
Posted by: SaraK | August 28, 2008 10:34 AM
Hi Torrie,
I'm also mostly a lurker, but I'm so sorry about the bad news you got. I wish that there was something I could do to make things better from across the internet. I know from the blog that you're not religious, but I am...I will say a prayer for some sort of help to work out if that's OK. You just seem like such a nice, genuinely sweet person and that's all I can really do to help. I hope that doesn't cause offense.
Shayna
Posted by: Shayna | August 28, 2008 11:28 AM
Hi torrie
I am sorry to hear about your health . I rarely comment , but do like ur style of writing and love ur outlook towards life.
HAve you considered Naturopathy , or other alternative medicines like Homeopathy ,AyurvedicMedicines. Its a slow process but dont have any side effects unlike the modern medicines ..
This is site for NAturopaths in US and Canada.
http://naturopaths.healthprofs.com/medicinenet/content/
There are holistic centers in India and China where you can stay for a couple weeks for intense therapy. I know that may not be possible right now .. financially and emotionally considering Willa's young age and ur husband's fellowship. This is something you can definately look into and some of these retreats do cater foreign nationals too. Or you can find something similar here in US or Canada ..
You shall be in my prayers ..
Alpa
Posted by: Alpa | August 28, 2008 12:38 PM
Not the same thing- but my mom was diagnosed with rhumetoid arthritis when she was 17 (something rarely seen in people that age) She suffered chronic pain, fused joints and poor mobility.
She managed to pull through and raise us three kids with the help of some mild pain killers, a diet rich in antioxidents, veggies and fruits and PLENTY OF VITAMINS even the doctors have a hard time explaining why she isn't crippled at this point. She lived with this for 30 years and finally now there are treatments to help. I know it's not the same, but you will manage and pull through- I have followed this blog for a very long time- you are a strong woman and I know you will mentally make it through this!
I can only imagine how sad you feel-
Thinking of you!
Posted by: Carrie | August 28, 2008 10:12 PM
Hi Torrie. I guess i should bee called a lurker to, even though I have commented a couple of times before.
I must say, I feel really bad for u, and i completely understand your fear and frustration. Unfortunately I know what it`s like to live with constant pain. My biggest problem is to maeke my spouse understand how much help i really need, and how much pain I am in. I sometimes feel like he thinks im just complaining, and that wears me down just as much as the pain sometimes. So the understanding from your husband, is very good.
I hope you get an appointment with a PT that can set up some exercises that you can do at home, that will help you. And I hope that you will find ways that can make your life a little easier.
*bighug*
Posted by: Anette | August 29, 2008 08:34 PM
Ah, gosh.. if I were closer I'd watch Willa for you for free so you could go to PT.
I'm sorry that this is all happening to you. Being a mother is hard all by itself but with all this other stuff you have to deal with it's just heart breaking to read about it.
Hoping these next 10 months pass quickly. Hang in there.. you're one tough Mama.
Posted by: Aimee | September 1, 2008 03:37 PM
Have you tried a chiropractor?
Posted by: ferroever | September 13, 2008 01:53 AM