I have moved to the dark side tonight...

[michelleric]

I am not ok, and I am tired of not being ok. I am overwhelmed, mad, sad, angry, blue etc...

I am tired of getting the run around from docs, insurance, and now PT.  I went to a PT a few weeks ago, bad experience, didnt go back. Found a new PT who treats "many" MS patients. Went to her about 2 weeks ago. She is good, and I am faithfully doing the exercises. My prescription for PT says, MS and Myelopathy. She told me she is a bit confused about my weakness and gait, and I need to see her boss who can measure me for a brace/and or foot/ankle AFO.

I see him yesterday, he spends about 1/2 hour with me,and then tells me I am too "complicated" for him, and I need to see the "big wig". I am "lucky" because there are only 2 orthodist in the country who can help me, and one of them is about 45 minutes away from me. I need a custom brace. This guy fits many soldiers who are amputees and has special equipment to make "anything".

There are  2 down sides, he tells me. One is the cost (which he thinks is about $400.00 to see him, and then the cost of the brace), and the 2nd is there is no guarantee is will help. "On a scale from 0-10 your muscle tone  is a 1, so he has seen people worse off, but I am pretty low on the scale."

Today I had PT, and she asked me not too be offended, but am I on a mood stabilizer? I tell her no, she tells me to call my doc, I need one. Everytime I come in I end up crying. Honestly, I get very sad when I see people twice my age, moving and doing so much better than I do. It is at a wellness center, so the PT is mixed in with the well people. You know the big, and buff ones... Think I am grieving my loss of the body I once had. Don't get me wrong, I never ran marathons, but I could park far and make it through Sam's club like nobody's business. Today was hard, I am SO fatigued. PT knew that, because she had to wake me up in the waiting room. Felt and still feel like I am swimming in quicksand. My balance is off, I fell twice today, just so unstable. Working out with the machines today, took all my strength just to hold on to things and not fall.

So, that is it. Sorry I am writing a book here. I don't feel well, pretty sure I have a UTI, and my ear pain is EXCRUCIATING. I will call doc tomorrow, ask him for UTI med, perhaps a painkiller for my ear, and some happy pills.

Thanks for reading this if you did. I almost deleted it, because it is like a letter you never send.

Michelle

[ShadowsSister]

Hi Sweetie, I am so glad to read your latest post, maybe Relieved would be a better way of stating my feelings this morning. I am also relieved that you turned to this group for support and understanding. I have so much love and respect for every single one of them. They give support and understanding, Never Pity.
From the way you sound you are turning a corner or at least getting ready to start fighting for YOU again. I also believe you will have another remission, I am not sure how they work since I have Never had one my own-self.
Michelle, Please do as Laura suggested and get your Medical records cleared up. I know it can be difficult to do, but I know it can be done. It tool me almost a year to clear mine up. One of my Doctors had another Patience with the same name as mine thank-goodness we had different Birth Dates. Talk about a huge mess..
Please stay in touch with us, so we all know how you are doing. Hang in there and try to remember you aren't alone any more. "OUR GROUP" will always be here for you....
Now give your self a loving gentle hug {{{~!~}}}, by doing something special for your self today.
As for the MS Hugs... they aren't Nice, They hurt and they even broke four of my ribs on the left side next to the spine.. They are now healing so the pain factor is letting up  :-) Of course it was the spasticity that caused the damage not the spasms..
I will be keeping an eye out for you, and will be keeping you in my Prayers daily....
Hugs on the winds from me to you {{{~!~}}} DJ

[michelleric]

Thanks, yes that is what I was thinking. I never gave myself a shot. It must have been someone elses record got mixed in with mine. I will ask the neuro-ophthalmologist about it. She knows my friend/old boss what going to call me and let me know of their conversation.

Really strange, and yes, not a good thing. My neuro did say she would start me on Copaxone, but wanted me to see the ophthalmologist before hand. What, I dont know, but perhaps that is how it got in my chart. Coincidentally, It was the same visit she spoke about the copaxone, when I was having the MS hug. (by the way, dont know why they call it a hug. It is like no other hug I have ever had).

Thanks Laura,

Michelle

[Lulu54]

The chest pains would probably have been associated with a patient on Copaxone.  You have not been  copaxone, right?- if my memory is right here, you have not be on any DMD yet.  Too many issues of jobs, insurance, illlnesses, etc.  If you had, you would have been given yourself a daily injection.  

This is an error in your records that definitely has to be corrected.  You do not want to have something like this there - it would remove copaxone as an option for you.  Records get confused and can cause major problems.  And it can happen with only one small entry like the wrong patients reaction to a drug being put in your file.


Any DMD you would have tried would havebeen an injection and would have involved a nurse coming to your home to train you.  Believe me, you would have remembered that too.

Please don't doubt yourself on something this important.
hugs to you,
Laura

[michelleric]

Thank you for the new comments. It is so supportive and inspirational to see people deal with their circumstances and make the best of it.

I was/am pretty much "couch bound" today, no change for the last 4-5 days or so. The fatigue is so fatiguing, (couldnt really think I can describe it, but know you all know what I am talking about.) I went to PT this morning, did ok for about the first 10 minutes, and that was it. I think my bladder infection has triggered a flare, but I hope and pray it is short lived, particularity the ear pain from the TN.

On another note, my old boss and friend, who is an ophthalmogist out East, went to school with the Neuro opthlalmologist I am seeing next month. My neuro referred me there. She called her today, and the neuro could pull out all my records. They are all in the computer and any appts I have had are documented there.

I have a dx of RRMS, and neuro said she started a DMD, but I had chest pains from it and they had to discontinue it. I told my friend/old boss, I think she pulled up the wrong chart. But no, it was all there. the bouts of ON, all my current meds, surgeries...etc. I must really be losing it, because I dont recall anything like that. Bizarre.

The good thing is I now have an "in" with the neuro opht. that I will be seeing. I actually new her when she was a resident, about 20 years ago. I worked with her in the hospital. It sure is a small world.

So all in all, I think it is good news. Perhaps after this visit I will start a DMD, I still cant wrap my head around the time when I had chest pain due to the DMD?? I must REALLY be out of it to not remember?! Perhaps she was referring to the MS hug? DOnt know , but scares me I either dont remember or the record is wrong. "Whatever", as my teenager says...

Thanks again to all,

Michelle

[ShadowsSister]

Hi There, I know what despair sounds like and also how it feels. Believe me we all have been there at some time. I know I was a while back. I am so grateful I had found this wonderful support group before it hit... Michelle, I know it helped me to know I wasn't alone, that others knew what I was dealing with and they understood and were there for me. I am talking about " Our Support Group" here at medhelp.
Sweetie, you have many reasons to feel the way you feel, but I hope knowing we are all here for you will help some.
The trick is not to give up on you,  and to allow us to be there for you.
Just when I think I have reach the end and can't take one more day of pain, it starts to let up a bit. So I enjoy a decent day now and again.  I tell myself that God isn't going to give me more than I can handle and I really believe this ! ( But of course some days I wonder). I have lived, with MS for 23 + years and I haven't experiacnced a remission but there is always tomorrowed .
So I hope you will hang in there, and also hang out with us, we GET IT, and we are all here for you
{{{~!~}}}

[SickMomma_PDX]

Hi Michelle,

Good for you for getting so much accomplished already. My heart broke reading your original post, and I'm glad you're already taking steps to help yourself there. That's huge, all by itself.

The only thing I wanted to add to what everyone else is telling you is that if the Wellbutrin either has side effects you can't tolerate or doesn't help, please please please ask your docs to recommend another one.

I first went on anti-depressants from a bad case of post-partum depression, and it took months of trial and error with at least half a dozen meds until we found one that worked for me but didn't make me sick. I weaned off when the PPD went away, but when several months after getting sick with my mystery illness two years ago, I was crying all the time about just about anything, so I asked to be put back on Cymbalta, the drug that worked for me with the PPD. It doesn't make my life all sunshine and smiles, but it helps a lot with keeping me from dwelling on how much it ***** to be this sick and this dysfunctional without even a diagnosis.

Anyway, in my experience and from everything I've read, it's very, very common for people to need to try several different anti-depressants before they find the one that really works for them. Also keep in mind that it takes at least six weeks for them to reach full strength in your system, but my doctor said most people started seeing some improvement after two weeks if the med was a good fit.

Good luck, and hang in there!

[sllowe]

Hey Michelle,

Sorry to chime in late. You really muscled through this one.  Just wanting to make sure you are giving yourself many pats on the back for what you accomplished in a very short timeframe while bluer than blue.

Hope the antidepres works. You started your DMD? It can be a major contributor on top of all you've had going on this past year.

-shell

[biowham]

That's great progress. Keep making lists, taking it one step at a time, one day at a time. Don't think too far ahead. Focus on what's in front of you, what needs to be done now. Do not try to mentally encompass anything but the very near future.

And as long as we're doing quotes, here's one of my favorites: "Let us not be weary in well doing for in due course, we shall reap if we faint not." Gal 6:9

Bio

[Sarahsmom46]

You had a very productive day indeed.  What you accomplished today is very significant and the effects will be felt for a long, long time especially getting the handicap parking permit.  That is a huge help.  

Try to make every day as good a day as you can whether it is all day or only 30 minutes and remember that even if yesterday was a bad day, that today or tomorrow will be better.  I hate cliches, but this one is a good one to keep in mind "what doesn't kill us makes us stronger".  

Hang in there and pat yourself on the back for accomplishing so much done today.  

Hugs,

Julie

[michelleric]

Ok, well I had a very productive day, even through all the tears, which are still coming. Like the dam broke and the tears wont stop.

1)Went to PCP, had urinary tract infection, given antibiotic. Done.

2)_Had him look in my ear, knew he wouldn't see anything, which he didn't, so told me to call neuro.

3) Told him I needed some mental health pills. He said he would write it, but I should ask neuro to tell him which one. (interactions with all my meds)

4) got script for handicapped permit

5) went to DMV, got the handicapped permit, and was crying so hard, couldn't even see where to sign, but got it.

6) called neuro, she called me in Wellbutrin ?spelling

So, all in all, guess I did what I had to do today. A new chapter begins...again.

Thanks to all of you, I am here and still keep on keeping on...

Michelle

[saveone]

Everyone has given you such good advice.  I am not sure if you are dx or not but it really doesn't matter.  Whether facing or searching for an answer the end result can be the same, i.e. mixed emotions, anger, sadness, anxiety, etc and the inablility to control them.  A good counselor and the appropriate medications can help you with this.

As to how you felt in PT, I can totally relate.  Like you my PT was held in the wellness center.  I remember waiting for appt and watching ppl 20 years my senior walking on the treadmill or riding the bike.  I was so sad.  I would fight not to cry right where I was sitting.  I didn't want everyone to see me.  I was grieving for what I thought I had lost.  Five months later I took my first walk on the treadmill, it was only for 3 minutes and at a snail's pace, but I did it.  

Over the next couple of weeks I moved to walking at 3.2 miles per hour and walking a mile which took me 20 - 25 minutes.  Yes I still had to hold on to the rails, I couldn't look at my feet I had to have a focal point to maintain my balance and so on and so forth.  I was so happy.  I had accomplished doing something I thought I never would do again and you will too.  It takes a lot of work.  Sometimes you will feel like you are back to square one but you have to keep going.  The prize at the end is well worth the journey.

Sending you the peace, strength and patience you need to get to the other side.  terry

[Charley123]

I know what it's like to grieve for the loss of who we once were.  I know the dark spaces only too well.  I encourage you to check out meds that can help you.  I told my doc that even though I have this unpredictable, totally frustrating disease, that I needed something so that I wouldn't feel so overwhelmed and depressed all the time.  It seems to be working out ok.  Hugs to you, Charley.

[Mand125]

Hi Michelle

I hope you are feeling better today, you have been through such a lot lately. Did you get something from the doc? If there is something that will make you feel better then go for it.

Take care
Mand

[PastorDan]

Prayers offered, blessings sought on your behalf, my friend.  Been quite where you are myself.  Get the help you need, and do your best to stick with it.  If you can't stick with it, get help for that too.

[michelleric]

Thanks so much for your comments, I have been reading and re-reading them. It helps.

I think the dam let loose, and cant stop crying since last night. Cant sleep due this horrible ear pain, and feel like I was run over my a jeep. (sort of like my husband was, but not literally for me.)  I don't even know if I shared that story here...another day perhaps.

I am not strong, I am just doing what I need to do to get though this mess the past few months have given me. They say god gives you what you can handle, I don't believe that statement anymore.

Anyway, I am calling my doc today, and then staying in bed ALL day. or at least until 2:30 when I pick up the kids. One of them was an unaccompanied minor and flew to see his grandparents yesterday. So I am down to 3 this week. They are all in camp today, so after I drop them off, I am returning to get and stay in bed.

Thats it. I am SO glad I found this wonderful group here. You are all what has been carrying me though I think. I appreciate all the support and friendship. Nice to feel like there are others who have had similar experience, and can provide hope. I cling to that,

Michelle

[Udkas]

Hi there,
I don't think we have met before and I don't know your story but I felt compelled to post when I read your story.

I think there are lots of people who can relate to how you are feeling on this forum, I am so glad you posted, we all feel blue some days, with the failing of our bodies and the uncertainty of our future, I just hope you feel better soon and the blue feeling doesn't stay  around. Sometimes just venting with people who understand might make you feel better, I hope it does.

Sending cyber hugs your way.

Udkas...

[LLWB]

I'm sad you are sad. You have been through so much, and held together for so long. It's no wonder you are having these feelings of anger, sadness, blue, overwhelmed. I think it's part of the brieving process. Grieving for your old life, and the way you used to be. It's normal, and you have to learn to take each step as they come. And "happy pills" have their place to help you. It won't stop the process of helping you adjust to your new circumstances, but will give you time to let your emotions settle down.

Grieving lasts as long as it lasts. Go outside, scream, throw marshmellows, pull weeds, whatever it takes. We've all been there, in one way or another. If there is anything I can do to help you, please pm me. I (and all here) care for you very much.

Hugs & Prayers
Maggie

[Eyesnlegs]

I don't think we have met but I have wtched your story for a while.

You are so very brave, us lesser mortals would have caved in long ago. Be gentle with yourself, you are going through a great deal and need support from others too.

Everyone here has given you good advice,  just know that we all care and are thinking of you. You can write and essay here whenever you need to.

(((hugs)))
Pat
x

[biowham]

I'm so sorry that this is all getting to you. The pain and the UTI are likely magnifying all of your other feelings and stresses, so those need to be addressed ASAP. Then...you might consider getting in touch with an MS group in your area, if there is one. These are folks who have walked...walkered...or rollated...or rolled...the MS path, and I know from my experience in other areas that knowing and talking with people like this can lift a load, or part of it.

And don't delete these letters. We all need to know we're not alone.

Bio

[Lulu54]

Michelle,
I am so sad that we're not sitting face to face to discuss this. Please call your doctor in the morning and tell them everything that is going on - you need some adjustments to meds to help you through this.  It has been such a long haul for you - I would have folded by now with everything you have faced.

feel better,
L

[Sarahsmom46]

My heart really sank when I read your post.  Not because I felt sorry for you, but because I know how you are feeling and I hated every minute that I went through going through the same thing.  But, you will get to the otherside, I promise.   You will need to keep doing what you are doing to find what works for you and not give up.  

I used to compare myself to others in PT.  Like you, I was at least 20 years younger.  I hated going to to PT knowing I would see others doing so much better and being frustrated with the fact that it was taking so long to get where I wanted to be.  Guess what?  I finally made it.  I finally got to the point where my balance inproved, my stamina improved, my ability to stand up from a chair without falling down - improved.  And that will happen with you to my dear.  Don't be bogged down by what you can't  do and focus on what you can at least for now.  

And about the "happy pills" well, if they do the trick in helping you get through this tough and challenging time, then what do you have to lose.  And the ear pain, that has to be miserable beyond miserable.  Get something to take care of it so you can use your  valuable energy for other things.  

Hang in there dear and know you have an army behind you here to help you through this.  

Many hugs coming your way.

Julie

[wadeheather]

At this point I've decided that there's nothing wrong with happy pills - or rum- if it will get us through this.

Be strong.  You can do it! You have to be your own health advocate.

[rendean]

I am so sorry you have hit this low spot.  We all hit these spots and yet we survive to go on and weather the storm.

You are a very strong individual who has been through more in the past 6 months than anyone should have to endure. How you have bounced back numerous times to meet the next challenge is amazing!

We all have our low spots, and from what I have gathered, most of us are on a some sort of "happy pill" as this disease takes it toll mentally and physically. Feeling horrible physically is NOT helping you mentally so do not feel "guility" for not rising to this newest challenge. We are all here to support you!

Call that GP tomorrow and get the UTI taken care of. That will help some of the physical such as the ear pain from your TN. Ask for something for pain and let your guard down and get something to help  you deal with this mentally.

As for the brace and the costs, something can be worked out I'm sure. You aren' t the first to be saddled with insurance that will not cover a needed expense. My experience is to appeal all such refusals and 90% of the time I have gotten things covered by insurance.

Please know that we are all here for support. You don't need to delete letters such as this, you need to share so we can help you.

You are in my thoughts and prayers and I hope that with your GP's help you can get past this big bump in the road and slowly reclaim your life.

With huge hugs!!!
Ren