Not sure I'm going to make it to Christmas
 

I had a really bad, and very silent UTI over the past month. The MS symptoms just kept getting worse and worse, so I went to my regular doctor (who no longer takes my insurance because my insurance company, the largest insurance co in the state, refuses to work with the largest healthcare provider in the state anymore)

I'm in the middle of a massive flare. My walking has been getting steadily worse, daily, for the past several weeks. I'm afraid to call the neuro to ask for steroids, because he's refused them before.

I'm afraid to use my insurance for anything because I keep getting bills that are $500+ for one visit. I'm scared to switch to a new doctor, because they wouldn't know me.

I'd switch insurance, but I'm scared to do that too. Afraid the law will get changed, and the law about pre-existing conditions will change again, and I'll end up on government healthcare, which I'm hearing from relatives in the medical profession is even worse than what I have.

Don't think I'm going to make it to Christmas. I finished my antibiotics, and can tell the UTI is better, but it pushed me into a really big flare. I don't think I'll recover from this one. Not only is Christmas going to be ruined for me. I think the rest of my life is ruined.

It's been the worst year. I've been feeling worse and worse all year. Boyfriend dumped me because of the MS (at least that's what it felt like the reason for that was). Now I think I'm getting so bad that I'm going to end up making us either move to a new house, or I'll have to have some fairly intricate modifications made to the house. (I live in a basement)

My holiday is ruined, and I'm going to get blamed for ruining other family members Christmas. (people who don't live here, who think that I'm faking the MS. Kind of hard to fake neurological symptoms)

really starting to hate christmas almost as much as I hate the MS. Because the MS is ruining everything I do, or want to do.

oh erin,

i really feel for you. i wish i was there to give you a tremendous hug and hold your hand to help you fight. don't even give ANY thought to what anyone thinks who doesn't support you. it's not worth any effort on your part and just takes away from the energy you need to get help.

think about any options you have to get medical help. even if it means asking another dr if they could give you any way to get help and even if it wasn't thru them.

do you think turning up in the ER would accomplish anything? do you think if you called the local MS society that they could help you find someone or give you some advice.

please let us know how you are. i care. i wish i could help.

Gosh Erin

I am so very sorry to hear this - you are painting a pretty dark picture and I wish there was something I could do or say....but I can't, so sending you big hugs and hoping things will improve. :hug: :hug: :hug: :hug:

I'm so sorry you're going through all of this. :hug::hug:

It's like spasticity from hell. It's just harder and harder to move.

When I told the physiatrist about it, he just said "we'll watch it". I'm tired of that phrase.

The fatigue seems to be from hell too.

Neuro doesn't ever want to give me steroids, and the last time I asked about medications, he didn't suggest any.

Kind of stressed out by this entire year. My dad is also having serious problems too. And I've been having to put eye drops in his eye, every hour. I can barely move. His doctor kind of made me feel like it was my fault his eye swelling hadn't gone down. He had emergency eye surgery last week. Just so stressed. Tired.

Think I might need rehab, or occupational therapy fairly soon. It's just getting harder and harder to move around.

Hey, Erin <3
I wish i knew anything or anyone that could help.
I can only imagine the mental strain this is beginning to have on you. I know not much is accomplished but i suggest ringing a mental health helpline and talking things through, keep putting your thoughts and worries out in the open so its not swirling around in your mind, sometimes they might have some steps you can follow, or help you find ways to get more insight to your condition and what you are currently experiencing. I'm not sure how things are done in another country, where are you from?
Where you are mentioning rehab, if you think they arn't taking you seriously, you can find some community help as well, I'm sorry I'm being vague but not sure how things are done where you are. I suggest, pain relief and spending time with a special friend or family. Deep breath, you are strong xx If you like, you can message me and i can ask someone experiencing MS what they reckon ;)

I'm sorry Erin. When I fell and the bottom fell out for me, I called 911 to take me to ER.
From there I went to rehab, right there in the same great hospital. Maybe that is
what you should do.:hug:

Erin, I don't know how old you are but there are rehab facilities for just that purpose, short term inpatient care that could help get that UTI taken care of and do physical therapy also. Now I know that some of them are i nursing homes but there are other kinds also. Is there a local MS society there you could ring and get advice, just have a shoulder to lean on, vent with or know how to help you. You and only you are responsible for your emotions, not any body else's. If your boyfriend dumped you, that is his problem. Yes, living in a lower level is a problem for you but your parents aren't in the best of health either, maybe a move is in order. Are you on Medicare? When Mom was living in her assisted living facility, there were two young people there also just to have the physical therapy and their meals taken care of. Sometimes you do have to swallow your pride in order to get your health back. HUGE HUGS TO YOU

Definitely contact the National MS Society in your area. I didn't even think to say contact them until the others mentioned it (must be a bad thinking day for me).

The amount of resources and help available through the NMSS is phenomenal. I've been volunteering there and am still learning about everything they have to offer.

erin,

how are you today?

i hate to make this suggestion as i know it won't be easy but it sounds like you need another dr. someone who will listen to you and take your condition seriously.

I think the antibiotics FINALLY kicked in and finished off the uti for me. So, I don't feel quite as sick as I did over the weekend. That was a BAD uti! I don't think I'd had one that made me feel quite that sick before.

It's just I'm still stuck with feeling worse than I did several weeks ago.

have to wait to go see doctors because it's so close to Christmas, and I'm trying to get appointments. Plus, my dad's eye has been having trouble all weekend. So, I have to help him deal with that. I've been putting drops in his eye every hour while we're awake. Well, at least since he's been awake. I kept going back to bed this morning.

Really want to change my insurance now. I just got another two bills for doctors that are close to $1000 (one was like $300, other one was just under $600, and that was for doctors that the insurance actually covers!)

That's what's making me really mad, is that my insurance skyrocketed when they changed everything. Wondering where that savings we were told we'd get went. I can't afford to do anything. Starting to wonder if rehab will be allowed again.

Erin, is your insurance independent of your parents? If so would you be qualified for Medicaid? My primary care doctor has so many new patients because of Obama care that he has had to hire 3 more nurse practitioners. I know I can call in the morning and see one that day. Glad the UTI is better. It will take a good while to recover from that. How is your nutrition doing?

yeah, my insurance is independent from my parents. (they have Tricare because my dad was in the military for 30yrs)

My insurance is Blue Cross of Nebraska. Which just severed their relationship with the largest health system in Nebraska which is CHI Alegent Health. You can imagine the absolute panic of most of the state, because a lot of the hospitals in the smaller towns, CHI is the only game in town for doctors. Some people have to drive to different towns, or come to Omaha or Lincoln to see a non-CHI doctor. It is so annoying!

I'm sure the non-CHI doctors are great, and perfectly capable. I just want my doctors. The ones that I've been using since I graduated high school in 1989. I talked about this with my regular doctor the other day when I went to see him about the uti. He's pretty ticked off about it too. I'll be losing my doctor, but he lost a crap ton of patients! He told me he just wants to take care of his patients, and the stupid insurance company is screwing that up.

I don't think I can get Medicaid. I might not have any money that I can actually use at the moment, but I do have a retirement fund that I can't access for a long time, (not working, but not *actually* retired. I'm only 45) and that apparently keeps me from getting things like disability.

I'm going to look into getting different insurance, but I'm still a bit scared that what we were told how "pre-existing" conditions would affect insurance might not be true. (half the stuff they advertised before passing the law turned out to not be true) Just feeling a bit burned by everything. Mostly burned by how the MS is turning out. Then I have to deal with the stress of the doctors/insurance debacle going on here in Nebraska. It's too much stress to deal with while dealing with a stressful disease. Especially when they tell you to avoid stress when you have MS.

gentle hugs! I feel so badly for you. Hope it helps that we worry. :hug:

On a positive note: the UTI may have been what was making issues so bad. My neuro always tests for UTI and infections before he starts any 'roids. He said that they have learned from numerous studies that infection can mimic falres; thus, treat the infection and symptoms alleviate. Hopefully the antibiotics will make you feel better!

i'm glad at least the infection is under control.

i hope things get sorted out for you. it sounds like a real mess for everyone.
just do the best you can and try to take one thing at a time.

keep us posted.

I'm still having problems.

My ability to just move around my house has been getting worse and worse. I don't know if this is something normal. It had been getting worse from month to month. But now, it's happening daily. I don't know why. Every morning I get up, things are worse. Sometimes during the middle of the day, I can be sitting down, things won't be that bad. But then I get up to walk across the room, and I feel like someone turned on a gravity machine, and made everything heavier.

I don't feel like my doctors are willing to help me. Don't really understand why that is. It's like everyone wants me to die or something. Because that's what it feels like from where I sit.

Erin, you need an advocate. Some one from an official organization that is used to dealing with medical red tape or whatever hoop they are making you jump through. Especially since you can't jump anymore. Sometimes MS can just make you so darned tired you don't have the emotional or physical energy left to deal with it

when you do that, do they make you give up your ability to choose what you want? There was a news story here in town recently that a woman went to the hospital for a respiratory infection of some sort, and while she was there, the doctors just up and decided that she wasn't able to make decisions on her own. She disagreed with that, and they forced her to stay in a care facility. She ended up going to court to make them let her go, so she could go back home. (she won, but she still has to have visits from some department of aging) I don't want to end up with a problem like that.

Insurance
 

Erin,

So sorry hundreds for what you are going through. I am praying for you!
I know all to well the insurance war nightmare. I am going through the same thing. And I was forced to go over to the bully for 2015. As my doctors are not accepted with the other plan I have now.

That is one headache you don't need. Shame for the bully it is all about power and greed.

But you hang in there. God is the great physician, he will not forsake you.
God Bless and know we are here for you!:grouphug:

Can't sleep. My body is so uncomfortable. Everything hurts. Doesn't matter how I try to lay in bed, there is no comfortable position. I'd sleep more, but it's too uncomfortable, and painful.

I have an appointment with a physiatrist in January. just don't think I'm going to last that long.

Really hate the ms right now.

Erin....I'm so sorry you're having such problems now. We never know when this monster will rear it's ugly head or stay for how long.:mad: You mentioned hurting so much while trying to lie down in bed.....that's why I haven't slept in my bed for a few years. Have you tried sleeping in a recliner? That worked for awhile until it became too difficult getting in and out, even though it was a lift chair. Now I just sleep in my powerchair, tip back a little and grab my "blankie"...;):D

It's not the ideal situation for my swollen legs, which should be elevated more, but even if I had a hospital bed, I'd need help getting in and out. I'm holding onto my independence as long as possible.

Speaking of sleeping, guess I should try it now for a few hours. My aid comes at 11 am for three hours. I'll be thinking of you and pray you find the best outcome for your situation. Hang in there!!:hug: :hug: :grouphug:

erin,
i am praying for you; for somehow to feel better, have less pain, be able to sleep and renew yourself. and, to find someone who can be at your side thru seeing these "drs".

have you tried calling your MS society for help?
could your PCP help you. if you told him what you've told us could he somehow intervene for you?

God Bless erin.

I managed to get away from having to do errands for my parents constantly, and got down to the orthotic clinic this afternoon where I got my AFO. I've been needing to go there for months, but with my dad's health issues, I'd been putting it off.

Had him do some quick basic maintenance on the AFO. He adjusted it so that it lifts my foot up better, and he put the pins/stop back in it, to keep it from making my knee hyperextend. I didn't really need the stop earlier this year, mostly because I was still driving my car like a normal person at the time, and I needed the ability to move the foot at the time.

I have to get used to it again with the stop in it keeping it from hyperextending me. Told him that I'd quit wearing it for several months in the summer and fall because it was causing me more problems than it was solving, and was uncomfortable. At the time I was able to move my foot better, and it wasn't dropping as much. But then I had that flare kick things up again, and had really bad fatigue. I started wearing it again about three weeks ago when I started trying to do the exercise program, and was walking on a treadmill at the cardiac center.

The orthotic tech told me that it should work better now once I get used to the adjustments, and that walking on the treadmill should be easier once I can get back to doing that again. I stopped going to the exercise program for a bit because my dad's eye problems kept us from it. I had to take him to constant eye doctor's appointments because the pressures in his eye were out of control. It ate into the time that the cardiac center's gym was open.

Hoping I get used to the adjustments in the next couple of days. There's a chance I can go to the cardiac center at least one day next week. (they're closed because of Xmas, and will be closed at the end of next week because of New Years)

The tech told me the springs in the brace were not exactly springs anymore. More like crushed pieces of metal, and part of the brace was loose too. I told him that I'm going to hopefully change my insurance in the next few weeks. Beginning of the year I'm probably going to ask for new shoes to be on the brace.

He told me to go see my doctor. Which I've been trying to do for several months. I'm on a wait list because when the insurance company made me switch physiatrists, the new guy got inundated with new patients who also got forced over to him from their old doctors. Poor guy is backlogged now.

Stressful day today, and this post is rambling. I'm going to go watch tv.

I was just upstairs, trying to be sociable for Christmas. And I finally just had to come downstairs because the family members that don't believe that I'm sick were really ticking me off.

I couldn't walk thru my kitchen because one of them kept opening the dishwasher, and leaving it open. My balance today sucks, and if I try to bend down to close it, I start falling into the dishwasher. I asked him to close the dishwasher once, which he did. But then opened it up behind me and left it. So I couldn't turn around. Why they have to leave it open, where the three people in the house using walkers can't get around it. Annoyed me.

Then the whole not-being-able-to-stand-for-more-than-two-minutes-without-falling-down was getting annoying, because the able-bodied people plunked their butts down on all the chairs around the table, and wouldn't get up. If I said anything, they did the annoyed sigh, and grudgingly moved, but didn't offer me a chair.

Then I had to suffer thru several comments, where they implied that there's nothing wrong with me. I finally got tired of it all, and came downstairs. I'm really shaky today, and am really annoyed that the able-bodied family members that don't live here are such clueless lunkheads.

At least my dad's little sister was nice today, and I think I made her whole Christmas when I gave her a Kindle Paperwhite, and a fancy cover for it. I swear her eyes popped out of her head, and she sounded like a little kid when she asked if it was what she thought it was. I don't think anyone has given her anything like that before.

I'm just really stressed out by the other family members who can't be bothered to offer the handicapped person a chair. (in my own house!) Can't wait till everyone leaves, and it's quiet. I'm tired.

Erin I can't believe people think there is nothing wrong with you. I am glad my dishwasher is up against a wall because it is always open. The two of us don't use enough to run it very often and we just leave it open and keep on loading it until it's full. On our holidays we run about 3 loads because no one else fills it just like I do :p:) They think it is full and really it's only half full, they just don't fill it right

I can't believe that my sister doesn't seem to believe that I'm sick. My dad has told her. I don't ever talk to her about it, because she rolls her eyes at me. We pretty much haven't gotten along ever since she hit puberty. Not sure why, but she's always seemed to not really like me much.

She's the one I seem to get the most disbelief from that I'm sick. Her best friend has MS, and from what I've heard, her friend is doing fairly well with her MS. At least the last I heard. I kind of have a feeling that she might think that because her friend doesn't seem to have any problems, that she might think that the same would go for me. Too bad it doesn't work that way in reality.

It's just getting on my last nerve that I get comments from her that a lot of people with MS would find insulting. At least the people with MS that's fairly active, and disabling would probably find some of her comments insulting.

Hope things calm down for you after the holidays. I can't even tell you how happy I am that my sister has moved far, far away, she only believes I'm sick when it can make her the center of attention :rolleyes:. We haven't gotten along since my second Christmas, one year, one month and three days old and she decided to spaz out and beat me with her Barbie because I was chewing on her other one that she gave me to play with i might add. Seriously, whatelse is a Barbie good for if not gnawing on her legs?

Anyways, she's also one who can be extremely insulting whether we're alone together in which case her insults are towards the "it's mind over matter, you're only sick because you think you are" to.... In public (around other family members too) "you can't do anything for yourself at all!! Should I grab you some more napkins to use as you drink your water?" Insults.

My brother and sister-in-law were also terrible for having any kind of courtesy, they were staying with us for a bit last year, I was having serious vision problems and they kept leaving out trip hazards that I couldn't see half the time. Grrrr.... And worse they moved out because "they" couldn't stand living with us any longer if all I was going to do was constantly snap at them over stupid things.... Cause of course it's stupid that I'm doing daily face plants because they're leaving cabinet doors open, chairs pulled out from the table, stair step thing in the middle of the walkway, not to forget he little baby toys and such scattered about....but I was just a crazy control freak.

So you're not alone in having inconsiderate family members, most you can do is tell yourself that you didn't get to pick them.

Christmas was a huge stinking pile of disappointment.

The aunt that I gave that Kindle to, and I was happy that she liked it so much. Well, she went over to my other aunt's house across the street. While she was there, she looked at that aunt's tree, and said "are any of the presents under here for me?".

There was actually nothing for her under the tree there, but my other aunt felt kind of put on the spot by the comment. She ended up giving my aunt three presents. Two of which were what she had intended to give to me. (diamond bracelet, and a pair of gloves).

That present would have been the only thing that anyone would have given me for Christmas. All of the presents I got yesterday were things that I had ordered for myself because my dad has been sick this fall with his vision problems, and had told me to do all the shopping for him and my mom. (I ordered everything online). I knew what all of my presents were, because I ordered them for myself. I didn't even bother wrapping my own presents because I didn't see the point in doing that.

So I am extremely disappointed that the only thing that I was going to get that had been picked out by someone, and I had no knowledge of it beforehand ended up going to someone else. I saw the bracelet. When my aunt came back over to my house before she went home. She made a big deal to show everyone what she got. It was a really really pretty bracelet. It was mostly blue topaz, with some diamonds in it. It wasn't a super expensive bracelet from what I could tell of it. Probably sterling silver for the metal. But it was the style of jewelry I like.

Now that I know it was supposed to be mine. My feelings are really very hurt. I wish my other aunt hadn't told me that she gave my present away to someone else. I've been crying off and on today because all this did was just reinforce the feelings that no one cares. (I know my dad does, but he's had a lot to worry about this year).

Today also, I've been having a LOT of problems walking. It hurts, and I can barely move my feet. I know I'm going to end up with the MS ruining the rest of my life. I'm sitting here feeling it happen almost daily. I can't stop it, and no one cares.

It's not like I would have any use for the bracelet, or anywhere to wear it, since I don't go anywhere, or do anything anymore. It's just that I got a fleeting glimpse of it before I knew it was supposed to be mine.

I really really hate my life, and the MS.

Erin, you just come live in this forum and we will be your family. Not a one of us will hurt you. Your Aunt needs to talk to this friend of hers and ask her if there are different kinds of MS or some people have different symptoms than she does. Has she never heard of Annette Funicello??? (SP?) I know I am one of those people like her friend that I am sure a lot of people would be jealous of but at least I am aware that I am an extremely lucky person.

I hate Christmas too, sometimes, when I read stuff like this, Erin. It can be such a strictly "what's in it for me?" affair. That person purposefully leaving the dishwasher open...it was a gate and they controlled who walked through. Might've been the only thing in their pitiful life they could control.

Your aunt told you she gave your gifts away?? Can't call her insensitive because she was sensitive to the other aunt who asked if any gifts were hers. Sheesh, no wonder your gift recipient's eyes lit up at your present.

Your sister has a friend with MS who is doing well, well then, why aren't you doing well?? Surely you are faking because everyone knows MS hits everyone the same. Send her some info on Annette Funicello. Oh, never mind, don't waste your time. Everyone knows Annette was either faking or didn't have MS. :rolleyes:

I know your feelings are hurt, Erin, but please try not to cry. Bullies love it when we cry, and you are giving them exactly what they want. Even if they don't see you cry, they know they hurt you.

Never thought I'd say this, but, Shake It Off. (http://www.directlyrics.com/taylor-s...ff-lyrics.html)

The aunt that I gave the Kindle to, she got that before she went over to the other aunt's house. So, I don't exactly blame her for what happened.

I'm not exactly sure why it's bothering me so much. I think I'm just having a really really really extremely bad year, and I'm probably not handling that well. Maybe I'm just overly sensitive?

Starting to wonder if there's something else wrong with me, like maybe I don't have MS, but something even worse. I just feel really bad, and it literally feels like I'm weaker every week, and sometimes every day. Not sure why I feel that way.

I don't know if MS works that way tho. I don't know what I'm doing with being sick all the time, and I don't know what I'm supposed to do to get a doctor to listen to me about it. It's just exhausting to keep asking, and not getting any results, or responses from them.

erin,
if you have 1 dr that you think would be more receptive than any other maybe you could write him a letter.

i did that once with a rehab dr that i couldn't seem to get the right words out when i was at the visit.

try to be factual and not subjective. describe your physical, emotional & mental problems. it might help your dr believe you & reach out to help you.

gosh, i wish i could be more help.

My regular doctor, the one that I pretty much can't use much anymore because the insurance company won't work with that group of doctors and hospitals, they just started a new thing where you can leave messages on the computer for your doctor.

I've never used it, but I might just send a note to him thru that system later. See if that would get thru to him, and see if he can do something, or at least point me towards someone who can.

Erin, my doctor has that kind of system also and any communication I write is read by the nurse. Now I know my docotr's nurse will send it on to the doctor but I know some other offices where the nurse decides herself what to send and what not to.

I called the physiatrist that I was seeing last spring before my neuro made me go for a second opinion at another doctor (ended up hating the 2nd opinion guy)

So I have an appointment with the doctor I just called on the 21st, but I just basically begged them to see if I can go earlier, because I feel worse almost daily, and I think if I wait the three something weeks to see him, it'll be too late.

The secretary said she'd have the nurse call me tomorrow. Hopefully they can get me in earlier. Sucks that there's a holiday this week.

Not sure if I should bother calling the neuro, or the family doctor. They never want to give me steroids, and I'm not sure if I want those anyways. I want to see what the physiatrist says. Since my problem is moving, or not being able to move well, and feeling worse at that daily.

I couldn't drive my dad to his eye doctor today. I might have those hand controls, but I have no idea how to drive my car on snow and ice with those hand controls. Also I went pretty much straight from driving stick shift to driving with hand controls. I've never driven an automatic transmission car on snow. I don't know how automatics handle in snow. I was a diehard stick shift driver. I miss my old car. I could actually feel the road with that car.

It's snowing outside, and instead of being out there playing in it with my old car like I used to (4 wheel drive and manual transmission is fun on snow) I'm terrified to leave my garage. Another thing the ms stole. My love of driving stick shift.

physiatrist's office called this morning. They managed to get me moved up to the 7th. Now I'm just hoping the weather is good that day, so I don't have to use a taxi to get to his office.

I drove my car around the block last night because my mom wanted me to help her get the mail (we have a community mailbox. It's one house over). There was snow on the ground from yesterday's snowstorm. I could feel the wheel slipping some when I was driving it. I know the farmers need the snow because we're in a drought. I just hope that I can avoid having to drive in a lot of snow. (I can't get out of my car and walk in anywhere if the ground is snowy or icy)

My doctor's office is at the hospital, and they have valet parking, and a covered area for handing your car off to the valet. I'll just have to worry about making the walk up to the third floor.

Erin, is there anyone from the office who can come down and get you with one of their wheel chairs?

I might ask at the main desk when I walk into the hospital if they have someone who can help. The hospital that my dad was at earlier this year had people who would come down and escort you where you needed to go in a chair. That's a different medical group than the hospital I'm forced to use, but I'm hoping they have a similar set up. Either that, or I'm going to be walking very very slowly, and stopping to sit down a lot.

Hope I don't see the physical therapy people I was going to last summer while I'm there. When the hospital called me to have me do the survey they try to have patients do after they've had a procedure, or PT. I kind of gave them all a bad review. I asked to do it anonymously, but I'm still a little worried that they'll be able to figure out it was me who complained.

The physical therapist I had when I was there was a bit...abrupt with me a lot. She treated me like I was stupid a few times, and when she should have been working with me, she was constantly chatting with other people there. Patients, employees. I'd have to sit there and wait for her to get done giggling with everyone. That got on my nerves, and didn't really inspire me to do much with her, when she got snippy with me a few times.

Wasn't impressed with their PT services. At least the physiatrist seemed pretty good. They just had a crap PT therapist. I liked the temp that took over for her better when she left for a vacation.

Things have been really really bad tonight. I can barely move. I don't know if this is some uncontrolled spasticity (I'm really really stiff) or if it's the ms doing something to the nerves other than setting off the nasty spasticity.

The neuro told me last winter not to take any steroids, because he thought it would make things worse. So he has me under the impression that nothing can be done for whatever is going on now.

Then they've been doing the "we'll watch it for now" for everything I've complained about. Tonight I'm just so tired of "watching", and waiting for everything. It's exhausting. I can barely get around. I feel like all my friends have abandoned me. I'm bored, really really lonely. And it's really depressing sitting here, feeling myself get more and more disabled.

I live with a hypochondriac. My mom has been a true hypochondriac for my entire life. Know what happens when you live with one? Everyone you know assumes that you're a hypochondriac too, so most of my family thinks I'm making all of this up. (Gee thanks mom, for tarring me with your hypochondria tinged brush. Thanks a lot.)


I'm really disappointed in how things have been going. When I got diagnosed, they gave me the impression that things weren't going to be that bad. Well, it's bad.

Just tired of this. It's constant, and doesn't let up.

Sorry that you're going through a rough patch Erin. I sure can empathize with symptoms not letting up at times, as can most of us here; but then again, that can often be the nature of this stupid disease.

Please don't be concerned about what others may think with respect to whether what you are experiencing is real or not. Some folks just can't accept how things are without imputing their own take on it. I find that validating such imputations by even acknowledging them doesn't help anyone and can lead to more frustration but so does blaming others for our situation. True it can be isolating but we need to take care of our own needs as best we can, even when faced with little support from others.

To that end, can you maybe get involved in an interest to distract your mind's attention from the symptoms? Maybe watch a movie or documentary, take a course on line or something of that nature? I am also wondering if you might be able to get a pet of some sort to keep you company, especially for times like now when you are feeling alone.

Sending :hug::hug::hug:.
With love, Erika