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CatchMyPain Community and Pain Diary App to manage chronic illness

Complete Sick Suckitude

Sep 25, 2015 2:46 PM

I live between doctor's appointments. Just scheduled a a thyroid biopsy. Next week fasting glucose tolerance test. I can't get out of bed today because everything hurts. People around me pretend this is not happening. I am wicked lonely and not by nature a negative or whiny person. But this is a misery marathon and my legs are giving out.

Sep 25, 2015 2:49 PM

Re: Anthem/ex husband cruelty: Fifty seven confidential EObs went to ex husband. Not only didn't he say hello but who goes to 57 doctors ever, let alone in under a year. Total humiliation. I got a letter written for the insurance commissioner but don't have enough energy to fill out the form and get it sent in

Sep 25, 2015 2:50 PM

I sorta can relate although my pain hasn't gotten that bad it has slowed me down and if I mention hurting too my husband i get I hurt to and my job is harder than yours. Sometimes I just want pampered for just a min during those peaks of pain. Hang in there and use this app to vent it helps to know your not alone

Sep 25, 2015 2:51 PM

Thank you achy๐Ÿ˜”๐Ÿ’•

Sep 25, 2015 2:57 PM

Marsemouse, I'm so sorry you're hurting and feeling so alone. I understand the living between doctors appts. I'm the same way. A week of appt after appt really weigh me down and wear me out. You're in my thoughts and prayers. And (((hugs))) for a little strength! ๐Ÿ™๐ŸŒผ

Sep 25, 2015 3:02 PM

It wasn't 57 different Drs, some were mri's and labs and repeat visits. But there were fifty seven duplicate EObs for fifty seven reasons. And it continues. And in the middle of everything he texted asking for the dentist I sent him to once. That was actually a good thing because it alerted me. I didn't respond to him hoping he wouldn't remember The name but he did, and naturally I need to see the dentist myself right now. The receptionist knows me and I called and talked to her about it so she wouldn't schedule is on the same day or even week--but his audacity and the timing is staggering. I have to find a new dentist.

Sep 25, 2015 3:03 PM

Thank you Flappys, I'm so glad you're here๐Ÿ’. I hope you are feeling okay today, thank you for understanding.

Sep 25, 2015 3:07 PM

The thyroid doctor said unexplained fever patients go to the Center for disease control. did I mention that I have an unexplained fever, although that could be from the ulcerative colitis or the Lupus which are both active. But I'm too tired to figure it all out. I am so tired I just want to evaporate but I really don't want to evaporate I want my life back.

Sep 25, 2015 3:11 PM

this is the first time I haven't been able to get to my continuing education units. I worked so hard for that degree, went back to school--even though I haven't been able to work it meant so much to be able to keep my license. I just don't even see the point right now. But to lose it seems so sad. Please excuse marsemouse meltdown.

Sep 25, 2015 3:14 PM

The doctor was very kind! I want to affirm that. What a difference. I still wasn't honest about meds, not yet, not unless it's absolutely necessary. They started a new charting system here and everything goes by computer so I never know what who is going to see what or when, including, ahem my ex-husband.

Sep 25, 2015 3:32 PM

Somewhere I believe it's all my fault I guess I have to knowledge that. The other day a woman said to me "I just decided that I was not going to have lupus" when it was suspected she might. The implication, that somehow I could have decided not to have lupus as well. This happens in so many subtle ways all over the place. My physical therapist is also really kind and competent.

Sep 26, 2015 8:59 AM

Marsemouse, I haven't forgotten about you. I have read your posts and am going to head to my old office tomorrow and sit down with my old boss to get some help in helping you. We'll get this taken care of somehow. Hang in there!! Sending you {{{{Hugs}}}} to get you through. You are not alone and I know that living between appointments and worrying about diagnosis and trying to take care of every day things is overwhelming. I'm here for you as are the rest of us. ๐Ÿ’•๐Ÿ™๐Ÿป๐ŸŒป

Sep 26, 2015 11:49 AM

Alwayz I know you didn't forget๐Ÿ’• No one could have written the letter but me. I just need a surge of (pain free) energy to get the HIPAA form I lost downloaded from someone's computer, get over making it perfect and send it in. Blessings to you and thank you for your support and encouragement!๐Ÿ’

Sep 26, 2015 2:43 PM

Marsemouse, a meltdown is OK. It relieves stress so you can recoup and think clearer. I totally understand about the degree and CEUs to keep your accreditation. I let mine go last year. The lady wrote and said if I ever get able to go back to work they'll only require me to do the CEUs. You're in my thoughts and prayers. And I'm praying AlwayZ can help you too. ๐Ÿ™๐ŸŒผ

Sep 27, 2015 11:19 PM

Well I got myself kicked out of the house today! I asked exactly how exactly he expects me to do that and he said Take your stuff and go. So he really really really does not get it in a huge way. Plus, I don't smile enough and I am the mean one. This is so much fun.

Sep 27, 2015 11:27 PM

I don't know how to move a sick bay room when everything hurts and my eyes are burning and my guts are bad. I'm not crazy though, that's the hard that part. He acts like I am criminally insane because I'm not smiling enough while he pretends this is not happening until I finally snap, and then tells me to get out--like I can.

Sep 28, 2015 1:26 AM

In so sorry, marsemouse. Like you can control any of what's happening to you! And for him to expect you to just be able to get your stuff and leave is unreasonable.

Big hugs. I wish i could do something to help you out. But just know we are all here for you. Did he just tell you that you had to get our now?

Sep 28, 2015 10:20 PM

Thanks Kitty I haven't come out of my room since. He's been in and out but we didn't speak-- I'm just trying to hold myself together. My head is splitting my heart is jumping and I can't get in any comfortable position-- I've told him so many times how hard this is, he sees it on a daily basis, it's impossible for me to comprehend how he won't acknowledge and removes himself completely. Then to hurl everything back and say I'm mean--it's got me twisted. He just motioned his arm and said get your stuff and get out --I don't know how else to say I can't yet. He is saying he doesn't believe or care that this is all happening with his actions, or lack of action. He's very disrespectful--I've approached him about it several times, he refuses to pay attention. I just lost it yesterday.

Sep 28, 2015 10:28 PM

I mean I've tried talking to him nicely about the completely disrespectful thing he does before I lost it yesterday--he'll make that the issue instead of what it really is.

Sep 28, 2015 10:43 PM

He'd have to carry me out--this is so crazy making. How many times do I have to articulate what's wrong medically to him until it starts to feel humiliating--he acts like I could really run a 5k and get a job in between this pesky unattractive illness scenario. I think it repulses him. He starts mocking--sneering, that triggers me to Pluto and back and I can't say anything effectively. Or he just doesn't give a crap enough if I dare go out of the lines and too bad. I'm trying to think of a hospital or program or something but I was just lying here wondering if my health insurance is still messed up. Breathe.

Sep 28, 2015 10:53 PM

Breathe in and out.

I know exactly the type of person you're referring to. I don't know your husband but i know the type. And they send me into orbit when i am meaning to be calm and explain it. But explaining how our bodies are to people like that is tantamount to beating your own self about the head with a brick, useless and only serves to get you in a state of agony where nothing works and nothing makes sense anymore. And you're overwhelmed with the amount of blood (aka energy) you're losing dealing with this unneeded stress.

I mean, seriously what does he expect you to do, live beneath a bridge? I truly believe some people are just completely ignorant and they think because they're healthy every one else must be.

Do you have anyone you can stay with on a temporary basis? Or is there a 800 number for your insurance that you can call tonight?

I'm sorry you're in this situation. This is no way to live and as we all know, stress totally throws us into huge a$$ flares. (please excuse my language).

Can you distract yourself? Anyone you can call who has chronic illness or even just a friend who understands?

Sep 28, 2015 10:59 PM

Marsemouse, I am so disheartened to hear of the nightmare that you are enduring on top of the already overwhelming issues of your health. I am feeling so badly that I haven't been able to help you more quickly but I want to be able to stear you in the right direction so that your Blue Cross issues are settled properly and that I can get ONE person from Blue Cross to best assist you in comprising your letter and getting this mess resolved. Unfortunately, as I'm sure you've already found out, working with insurance companies of any kind is a process and it's so rediculously slow to get anything done. (If it was the other way and you owed THEM something, everything happens in 5 minutes!!) try to hang in there. I'm so super for you, I'd love to be able to come over and punch him in the face for you!! I am sending you {{{Hugs}}} and keeping you in my prayers. Stay strong, you ARE strong.๐ŸŒป๐Ÿ™๐Ÿป

Sep 28, 2015 11:05 PM

I'm with Alwayz, we'll all come over and descend on him and give him a good wallop

Sep 29, 2015 6:58 AM

I can't lay on the left cause of the pvc's, but right shoulder is messed up. pain woke me up at 3am and I can't get back to sleep. exhaustion makes me agoraphobic. My shoulder hurts. My neck hurts. My hand really really hurts. I have an ice pack now and physical therapy today but I need to get food. I'm going to be so wiped out today. I have sinus pressure behind my right eye -it gets really bad and the only way it drains is to lay on the left. I'm so exhausted I don't know what to do. I'm sorry this is what it's like alone in here but much worse.

Sep 29, 2015 7:08 AM

Kitty it's my father--post divorce, it's so humiliating. I told him he pretends to know this isn't humiliating but you're right/-he asked what was humiliating. It's pointless and maddening and I know that. And unfair in a way that is particularly devastating . I wouldn't be here unless it was a last resort. My husband bullied me into an unfair settlement, my family acted like it wasn't happening and I got too sick to move. Thank you so much for writing, I do feel ashamed to be in this position at this stage of my life.

Sep 29, 2015 11:27 AM

Marsemouse, it pains me to hear such despair in your words. Please don't be ashamed of your situation. You didn't ask to get sick. You didn't expect to have a bully for a husband and a dismissive family that offered you no support. You are not alone. I am here, by your side, holding your hand, giving you {{{Hugs}}} and a shoulder to lean on. There are many others here as well that will do the same. You have an entire family brought together by different circumstances but together and supporting one another just the same. Please hang in there. I wish I could do more to help, but please know that you have people who genuinely care for you right here. Don't apologize for voicing your situation. We all have our issues with family, friends, doctors, etc. and there is no shame in any of it. It is the hand we were dealt for whatever reason and we just have to push through as best we can. I hope you got some rest and that you are feeling a little bit uplifted. You are in my prayers. ๐Ÿ’•๐Ÿ™๐Ÿป๐ŸŒป

Sep 29, 2015 12:48 PM

Thank you Alwayz you made me cry! We talked a bit, I don't have to be out immediately. I tried as best I could to explain "chronic pain/illness๐Ÿ˜–" but it is like talking a foreign language. I'm breathing easier--just emotionally hungover! Whew. Thanks again.

Sep 29, 2015 2:18 PM

He tried, he really did. It would almost be easier if there was no part of him that cares, he does--it's just all twisted up and self centered but he can't help it. The ex...well that's another story. I think the way he brought my medical history into court was reprehensibly low. The only high point was when he tried to make me see their medical expert ( to challenge the lupus --said "he'd never seen the actual diagnosis" and it was the dr who diagnosed me! He Didn't even remember. But the judge wouldn't allow it anyway, my sewing their medical expert. My medical records were subpoenaed for all to see every diagnosis. The first "expert" they wanted me to see had violations for skewing medical reports. No wonder I'm psycho. I told my dad I lost my temper because of the lunar eclipse. ๐Ÿ˜‡

Sep 29, 2015 2:18 PM

Seeing not sewing, though that might have been fun.

Sep 30, 2015 8:18 PM

This is mega pain day. I went for a glucose tolerance test, almost puked the stuff up, came home and can't sleep despite oxyxodone Xanax and medical weed. All at prescribed amounts with the exception of weed because there are no prescribed amounts for medical weed. I guess the lupus flare is from the the heat. My eyes are burning, pinched neck nerve is radiating down to my arthritic thumb and I swear my teeth hurt. Everything feels on fire and I need shoulder surgery when I can get around to it. It's been a while since I've gotten such little relief from meds but I'll be hungover if I take more and I don't want to become more tolerant. This is so stressful! I wonder if thyroid has anything to do with the exhaustion and palps--nah, that would be too easy. I can see where this would be extreme and so uninteresting to the general public. How will I find a life? At least I'm asking.

Sep 30, 2015 8:29 PM

I judge. People judge. It sucks. The absolute only thing I can control is...nothing. Today I thought what if it just sucks and then that's it. Well that would suck a lot more. But I don't know so I stay for the question mark. Sometimes I can control my attitude, if I've had enough time to work out my thoughts and run through each one honestly. Some people would call that obsessing and they would also be right. I need a nap.

Sep 30, 2015 8:43 PM

Marsemouse, I'm just getting to read your posts, and your situation makes me want to cry with and for you. To be physically hurting with pain is hard enough to bear, but to feel so isolated and alone is heartbreaking! You may feel alone in your house, but you aren't. We're all here for you. Stress makes our pain so much worse. Try and relax with some music before you try sleeping tonight. And take everything a step at a time, a day at a time. You will remain in my thoughts and prayers. Hugs for comfort! ๐Ÿ™๐ŸŒผ

Sep 30, 2015 8:53 PM

Flappys I just love you. I'm trying to learn how to hang out with myself. Sometimes it's okay and sometimes I laugh. But I don't know about these pain jags I'm trying to catch myself before I inflict more pain with my thoughts--very challenging. A different kind of medical weed helped the connective tissue burning sensation or neuralgia or whatever those set of symptoms is so I'm relieved about that. I want to read your update Flappys, maybe I'll meet you at the Mayo!

Sep 30, 2015 8:54 PM

Marsemouse I am so sorry you are having such a hard time with your Dad. I wish I could do more for you, I am with Alwayz we could all get together and give him a wallop, your husband. Is there any organization's for women that offers shelter that you could call, just in case. Do you think if your Dad went with you to a Dr visit that he might listen to him better. Will be praying for you,hugs.

Sep 30, 2015 9:15 PM

I'd love to have someone with me there, at Mayo! ๐Ÿ˜‰ My daughter said it sounds more like a drug rehab/detox, and if they remove my meds in a 3 week period I'll go through withdrawals. She said if I knew my medical conditions would improve and I could return to work, go for it. . I haven't made up my mind. I want to talk to some of my docs. Weezies suggestion to take your dad with you it's a good idea.๐Ÿ™๐ŸŒผ

Sep 30, 2015 9:22 PM

Flappys and marse, I would love to meet you guys at Mayo as well. Marse, I have a high heeled shoe we could wallop your dad with and call it good and even.

Sep 30, 2015 10:30 PM

Lol, Amanda, let's do it! I'll hurl my Vape pens and you throw your shoe! Flappys I'm really interested to know what you think after hearing your daughter's opinion. My father wouldn't be involved but I've been curious about the whole Mayo Clinic idea for awhile. I don't know how I'd possibly be able to arrange it all or have the energy to get there--and the travel cost ๐Ÿ˜–. I'm exhausted to new levels. And I'm not kidding, this level of exhaustion and pain makes me agoraphobic, I hadn't realized to what degree. Back to the shoe..

Sep 30, 2015 10:34 PM

Weezie you're awesome it's great to see you!! I think a walloping session is definitely in order. Let's arrange it as soon as we can, I'm up for it. That's about the only thing I'm up for!!

Oct 01, 2015 10:15 AM

I'm having cognitive disturbance this week scary bad. I feel like it was just Friday, I know Friday is tomorrow but my perspective of time is off. My memory is shi*te and its embarrassing and maddening. I have to say things out loud to myself and I still can't remember, from my thought to the search engine or from my brain to my hand. Yesterday I saw a woman muttering to herself like a street person but I knew exactly how she was feeling. It made me sad thinking this is how lonely old sick women become. (Not necessarily!) I try to keep my humor and I know I'm overwhelmed--I posted about knee pain on the wrong thread to poor Piggy yesterday (I think I'd rather be in the UK piggy, no?) and I looked for my glasses a half hour while they were on the top of my head. Mom wherever you are, I'm sorry for ever thinking
you were scattered--I know exactly how you felt now! My mom lost her glasses daily and put the remote control back in the refrigerator once ๐Ÿ˜…. I have got to try and walk around the block, even in the heat. I hope you all have one tiny okay thing happen today, at least. I'm glad you're all here, thank you.

Oct 01, 2015 10:16 AM

At the very least. I mean.

Oct 01, 2015 4:33 PM

I think my pain is in direct proportion to self hate. I think this is also from past abuse. Then people think, well go ahead and love yourself and you won't have pain or be sick. But it's not so easy. I can trace this pain to an interaction today, what triggered it and how it manifested physically. And I was only able to do that because the medical weed allowed a certain primal soothing but on a cellular level. And if I said this to a civilian they'd say I need to get to an NA meeting. My brain is a fricking French fry so they'd have a point. But so would I.

Oct 01, 2015 5:18 PM

This is the prednisone perch, I'm inflamed flambรฉ. I have never been able to tolerate it. By the time I get around to remembering the precise side effects with what dose we'll be onto the next medication I tried six times five years ago that maybe might not help again. Maybe I'll try a milligram. But not now, I'll be up until 3am. I saw the cutest puppy today. I almost ate the poor thing for breakfast he was so cute. So medical weed does not do the big time inflammation, not for me. But it does allow me to be more comfortable, and I need comfort.

Oct 02, 2015 5:31 AM

That's the other taboo. We're not ever supposed to admit feeling suicididal.

Oct 02, 2015 8:35 AM

Marsemouse, you are completely overwhelmed with too much going on at one time. You are where I was last year. I know it's hard to think it, but just believe (because we've got your back and many are praying for you), that at some point things will start to turn around.

From your recent posts, you actually might benefit from Mayo's clinic. Part of the program is teaching us to deal with our pain without self hating, learning to accept our illnesses and still live a functional life, enjoying life despite our pain. There's PT, OT, biofeedback, stress reduction training, dietary education influencing pain, and meds education and changes. They're swearing some meds can make pain worse. Not only did my pcp confirm that yesterday, but I had first hand experience with cymbalta doing just that. I don't remember where everyone lives but the MN & FL locations of Mayo have the program. I'm almost willing to bet their clinic in AZ does too. Heck, just getting away would relieve some stress.

I haven't made up my mind yet, and I'm still 60-40, leaning towards closer to home therapy. I told my hubby maybe I should wait until the new year and go, so that the cost will cover all my deductibles for the year again. I met my deductibles and copay by April this year, and haven't had any out of pocket expense for doctor visits. I did have to pay $1800 for a procedure though. But last night falling asleep it crossed my mind, if I wait until next year, I have to pay $6600 out of my pocket to not pay anymore the rest of the year, all medical, not including a hotel room, travel & food. Right now I'm only responsible for room, travel, food and possibly $1400 medical. It would be cheaper to go this year. So I have to decide asap. I'm trying to talk with some of my doctors first. I'll decide in the next two weeks hopefully.

Try and get some rest, relax with music, and a little weed if it helps. All meds come from something so when used medicinally, who cares what it is. Addictions are another game altogether. I suspect someone in my family has an addiction problem, to multiple hard core pain meds. It's sad! Anyway, I wish you as painless and stressors a day as possible! ,(((Hugs))) & a prayer. ๐Ÿ™๐ŸŒผ

Oct 02, 2015 12:47 PM

Flappys thank you so much, especially with everything you're going through. Cymbalta was one of the meds I had a "paradoxical" reaction to before I knew what it even meant. It was prescribed for depression and pain, made the pain worse and didn't help with the depression. In an optimal environment I would happily wean off some of the meds and implement healthier alternatives, like you're considering with the mayo program. You are exactly right, I'm completely overwhelmed and profoundly exhausted--the thought of strategizing that seems out of my grasp but I'm going to discuss it with my dr today, and with my endocrinologist after the biopsy and blood test results are back. Meanwhile I'm doing my best moment by moment to try and take care of myself. I would love to go through that program with you--I want to catch up on the latest with your decision about that. Hugs and prayers right back to you Flappys and I hope you have a great day.

Oct 02, 2015 12:55 PM

Flappys I also see where it makes sense not to do it, why you're 60/40 and the feedback you're getting here from everyone else. It is big business, no matter how great the program--some more suspect than others. In the best scenario we still need to come home and learn to live outside of an intensive hospital program with support 24/7. It's difficult to manufacture support, another reason this app is helpful for me. The cost is prohibitive, the stress of travel, so many considerations. You're right about one thing though, just getting away would help--a lot!!

Oct 02, 2015 1:32 PM

Marsemouse I'm glad to see that I am not alone in the day's of the week getting away from me it seems just like a couple of day's ago it was Friday. I wish we could all get to gather to really sit down and talk. I think we would all have a blast. I would love to be able to get off some of my pain meds.My Nuro put me on Cymbalta to take at bedtime for my Fibro and it seems to even be helping with my Syringomyelia too. I hope we all can have as stress and pain free day as possible. Hugs and prayers .

Oct 02, 2015 8:34 PM

Weezie, I did well on cymbalta for 6-7 miss but then started hurting more. Be alert to any of additional pain and potential mood changes. I am also losing track of my days, and have been for months.

Marsemouse, I think I'm stressing really bad just trying to decide. Being away from all my family and unable to talk to them except a few hours at night, is bothering me. I'm itching all over every day, and i know it's anxiety because my foot is wiggling 90mph! Lol. Then there's the whole med tapering. If I do it I'm to bring every daily meds I take; A full rx and a partial fill for the tapering. 1) I'm scared to death of tapering too many too fast. 2) It took 6 months to get me on the right asthma and allergy meds so that I wasn't having asthma attacks and heart issues with SOB. I'm very concerned because their plan is to reduce and change all my meds in 3 weeks time. 3) I'm not on any pain med but Tramadol & Tylenol. What's the big deal over that? The Tramadol is taken maybe 3x a month because with everything I've been through and all my med allergies, I have a high tolerance, meaning I ride it out as long as I can before I take the Tramadol. I'm just torn! ๐Ÿ™๐ŸŒผ

Oct 02, 2015 11:21 PM

Oh , Flappys sounds like you have so much going on. (if been wanting to reply to your mayo clinic post from when you first put it up but I get overwhelmed and shut down.) it is terrifying to have to pull down off your meds that took so long to get to s good place with. Especially the asthma & allergy meds. My may goes out to you because i suffer severely from allegories (Hahaha yeah bad allegories) I mean allergies and severe asthma (my asthma is so severe i have to wear a carbon Mask to go shopping for groceries because of my chemical sensitivity and allergies to fragrance and such. And i still get sick looking into hiring a friend to help with that so i can lower my exposure rate so I'm not sick all the time.)

So it sounds like it would be awesome if we could all get together and hang out. Often i don't meet people who get what I'm going through and there are so few support groups where i live. Where i live people are very judgmental & I just laugh at those who point, laugh and talk about me in the grocery with my Mask but it isn't as easy for my boyfriend to handle. Me, I will actually just smile (can't see my smile behind the mask but you can see it in the eyes and i say hello to everyone, when I'm not about to pass out from the pain lol or the asthma.)

Marsemouse, I just know i had some awesome reply to one of your comments but my brain got distract--oh look there's a butterfly Hahaha -

I'm thinking of y'all and sending big hugs and lots of hope and sunshine (unless you're allergic to any of the above them substitute for something that makes you feel good :) hey i get to say silly things like that because I'm allergic to such a long list my doctors always land the exam room , saying, "we'll do our best and let's see how it goes." my favorite doctors always says " I'm doing my best. We'll just take it step by step." is humbling to finally hear a doctor admit that I'm baffling and that he's okay with me and accepts me but I hear the frustration in his voice that he can't just fix me. At least he believes me.

And for you, marsemouse I'm sorry that you aren't getting the validation you need from someone who should be giving it to you. But hey that's why we've got each other.

๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ๐ŸŒผ๐ŸŒผ๐ŸŒบ๐ŸŒž๐ŸŒž๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ

Oct 02, 2015 11:23 PM

Excuse my autocorrect which should be named something else. I usually go back and re-read my responses but i don't have that energy lol so please excuse the misplaced words. I love how in this day and age we've had to compensate for autocorrect and taught ourselves what the author really meant and what autocorrect didn't correct correctly. ๐Ÿ˜

Oct 03, 2015 11:20 AM

Kitty, thank you for the thoughts and laughter! The butterfly distraction.. that's me too! You and I have a lot of the same allergies probably, so I totally understand. I've considered buying a mask but I'm not sure which one to get. What brand is yours? My hubby had to do the cleaning products isle, and use to do the laundry detergent. We now make our own, unscented, and I put one drop off draft baby wash in mine because it's so gentle but smells fresh. Who doesn't like baby smells after a bath?!! Hope you and everyone has a blessed day! Maybe we'll get a ๐ŸŒˆ if the sun ever shines again! Lol. ๐Ÿ™๐ŸŒผ

Oct 03, 2015 11:47 AM

Hey Marsemousr, I'm sorry that I have missed these posts, I've been under the weather for several days. The migraine has me down and out but I have to check in with all my peeps that I have become so fond of. I wish that I could kick your ex in the nuts for what he did to you with your medical information!! (Excuse the rash language.. Im a bit cranky). I'm sorry that you are in such despair. Nobody should have to deal with all of what you are. As you can see by the posts, there are many here, including myself, who are right here to help you along and give you hugs and encouragement. I also try sometimes try to just hang out with myself... It's fun, I giggle at myself.. Wait.. Is t that like scitzophrenia?? LOL!!! See, I know you're smiling and saying this chick is twisted!!!๐Ÿ˜œ๐Ÿ˜Š Its ok, if I can make one person's day better, the. I feel fulfilled and happy about it. I hope that today is better for you. {{{Hugs}}} and prayers.๐Ÿ’•๐Ÿ™๐Ÿป๐ŸŒป

Oct 03, 2015 1:32 PM

Thanks Weezie๐Ÿ’• Kitty๐Ÿ’• Flappys๐Ÿ’•! Flappys๐Ÿ’– reading your post about this decision makes me feel stressed with you. It is your body and you know it best. I don't know how they intend to taper you off your meds in three weeks time, it would scare me too. If you do go I guess you'd have to trust th Drs enough to surrender to the program. So many unknowns!! Lots of pain today but I wanted to say that for now. Pinched nerve in neck, shoulder tear and arthritis make using my dominant hand near impossible without injuring it more. I have to talk to the PT about that this Monday๐Ÿ˜”. Hugs and healing to us all๐Ÿ”ฎ๐Ÿ’–

Oct 03, 2015 2:19 PM

Always thank you, just make sure to kick hard! Thanks for saying that about losing time, it was kind of scary this week. Migraines--ugh. It's this compound health thing I feel like I'm collapsing under. I've been in chronic flare of ulcerative colitis--probably because I've been around so many *sses. It is a huge bummer. I was diagnosed over twenty years ago when I had no idea what "chronic" really meant. Then the "colitis related arthritis" that at some point became lupus and...?! There's only so much a body can take. And like I've said I wouldn't believe me if I heard I had all of these problems!! I don't wear illness and pain like a badge, either way it's reflected back by Drs or people who don't understand--I'm neither looking for pity or valor, I want to feel better!! Frack pain!

Oct 03, 2015 3:46 PM

Marse, I completely understand where you are coming from at this point. Truly I do. At this point, I know this might sound a tiny bit ridiculous if I were to say it out loud to a "normie" but I actually want to have this surgery being offered, willingly just to find out what the hell is causing this damn pain. I'm tired of it already!

Oct 03, 2015 3:58 PM

It doesn't sound ridiculous at all Amanda. Do you mean the laparoscopy? At least they can (hopefully) zone in on whatever is causing you so much grief. My rheumatologist assented (!) that maybe I should consult a shoulder surgeon--Physical Therapy is not going to sew a rotator cuff tear and dissolve a bunch of cysts, (eww sometimes I'm sorry I looked) at least I don't think so. He asked if I really wanted surgery/-of course I don't WANT surgery. I want him to live in my body for ten years and then tell me what he'd do.

Oct 03, 2015 4:03 PM

Ten years minimum. Actually given it's the doctor who told me I'm in the 3% of people who can't tolerate prednisone (?!$&@), twenty. Then he can resume his normal life. Thank you, I believe you really do understand. Even a normie couldn't blame you for wanting exploratory surgery at this point. It's enough.

Oct 03, 2015 4:08 PM

Amanda if this is the surgeon you posted about I'd go for it. I had one when I was 18 for an emergency situation--the laparoscopy was not a problem. Then they can find the scar tissue--I've heard endometriosis is unbelievably painful and frustrating.

Oct 03, 2015 5:46 PM

Oh yep, this is my gyn that's offering that option to me. Marse, endo is incredibly painful and frustrating. The only way to cure it unfortunately is to do a total hysterectomy with ovaries removed but my mom and I have discussed that and we have decided that I'm too young for that at this point. At this point, just trying to make it through to October 30th. If I need to, I can go early but trying not to do that already.

Oct 03, 2015 6:07 PM

I am in alot of discomfort today. I have shingles in my mouth, with a pounding headache. My RLS is on full swing on top of it all. But the weather I s getting colder. Sitting under heating pads all day for me.

Oct 03, 2015 7:42 PM

Tman2535, Shingles in your mouth must be awful! I had sjogrens and get tiny bumps that burn, as well as keeping thrush on & of (from asthma meds). I hope everything calms down soon.

Marsemouse thanks. My hubby and I keep going over the pros and cons, and each time we swing more towards me not going. I feel anxious about going for many reasons. Like what if I did go and then have a sudden flare, and I'm by myself and they've taken my meds? Without my car I'd have no way to get anything at a drugstore (they plan to take my OTC meds too). Because of my tremors there's no way I could make the drive by myself. Just taking my dog to & from the groomer yesterday, my hand has tremored so badly since. I'm just trying not to stress. I want to speak with several of my doctors for their opinions.

I hope everyone feels at least a bit better by tomorrow. ๐Ÿ™๐ŸŒผ

Oct 03, 2015 8:39 PM

I've really enjoyed these posts, it's so wonderful finding people that understand the stressors of chronic pain. Tman, oh my goodness, is there treatment for your mouth? I get mouth sores and get a cortisone mouthwash for the dentist that really helps. I'm so sorry for your pain and discomfort!

Oct 04, 2015 1:16 PM

TMan I am so sorry. Shingles pain travels along (dermatomes?) so I imagine you must be enduring a whole host of symptoms along with enduring wicked pain in your mouth. Amanda it breaks my heart that you've had to consider complete hysterectomy --I'm glad you have your mom and your awesome doctor. I'm so grateful to find these posts today. My father just triggered me awful-- I'm shaking, will post after I've calmed down a little.

Oct 04, 2015 6:16 PM

Marsemouse, I feel for you Hun, I really do. I'm going to make a new post later on to rant about my own problems, but let's just say I hear you on the isolation, agoraphobia, pain, and frustration/anger with ppl who should understand but don't (or willfully refuse to).

I'm so angry with your father. Your his daughter, how can he seriously kick u out? I'd remind him that someday he's going to get old and have health issues and need your help and compassion and how the hell would he feel if u just told him "well your old so just deal with it." Seriously, he can think what he wants and act like a child but u don't need to prove anything to him. You have plenty of proof of your medical issues and all he needs to do is go to a doctors appt with u to learn. It's not your job to educate him. His arrogant opinion has no actual bearing on your health. If u want to explain anything to him, my suggestion is to write it down. Write him a letter. That's how I get my thoughts out best.

Also, if you've been living with him for over a month, legally he can't just kick you out. He would have to actually go through a difficult eviction process. So I wouldn't worry about it unless u really want to leave.

Oct 05, 2015 10:04 AM

Hi Amy thanks for the support--it's a hard situation all the way around. I need to leave for my health but I can't leave because of my health. He'll never get it and I have to stop trying, but when it's a family member it's hard to stay objective, all the emotional charge. Thanks for getting it about the agoraphobia.

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