Update From The Fishbowl

[Sunfish]

Hi all ?

I know I?ve been a lot more in the background forum-wise and wanted to pop in with a bit of an update from the fishbowl. I?ll try to keep it concise but most of you know that?s not my forte .

A lot of why I?ve been quieter is b/c I?ve continued to really struggle health wise. I?m able to do less & less, am still on IV nutrition/fluids, etc. And since February/ March reading/writing had been a lot more difficult as well. This has been the case for me at times for years now but it had gotten to the point where it was 24/7. That is when I wasn?t sleeping. I was sleeping about 18 hrs a day for a good while post-hospital. I?ve had to leave grad school entirely and will be having to move home with my parents in the next several months (after almost ten years on my own) as they are having to come here so incredibly often as is; I can hardly take care of myself, much less my apartment.

Through testing the past few months I have now been given a probable diagnosis of mitochondrial disease (in addition to dysautonomia). Good I suppose to know what is fully going on (relatively speaking) in my body but it?s not a diagnosis one wants to have per se in regard to lack of understanding, ?newness?, prognosis, etc. Sort of a situation of jumping from the frying pan (dysautonomia) into the fire (mito disease) . One good thing that has come out of the mito diagnosis though seems to be my response to some of the meds I?ve started on for that; cognitively I?m doing better and on a good day can actually read a book now, something I?m really relishing. It's a bit of a catch-22 b/c the improvement makes the mito diagnosis more probable but hey....for now I'm just happy to be able to open (and read) a book.

My dysautonomia diagnosis has also been shifted to an autonomic failure/ progressive neuropathy. This isn?t really new information in terms of what?s been going on in my body but all of my docs (new & old) are now on the same page.

And yet there is more to my lack of posting than ?just? my health decline(s). I?ve still read every single post and care about the forum deeply; that hasn?t changed. And yet personally I feel incredibly disconnected. And that?s largely why I decided to post?in an effort to ?come clean? with where I?m at and perhaps get past it to the degree that?s feasible. I?m still a bit hesitant and am writing (and rewriting) this post in an effort to truly get across what I want to say. I also don't want to scare others in terms with all that is going on with me as it truly is NOT the norm...especially for someone my age.

I?m in such a different place health-wise than most everyone on the board. Different diagnoses and different prognosis. I could list off at least ten things that I wish I could post about and get feedback from others who will ?get it? and yet I know that others won?t get it. I don?t doubt that people care & are supportive in the best way they can be, but as most of you know too well there is a different value to responses from others who have ?been there, done that.? It?s the very reason so many (including me) find so much value in the forum. So PLEASE don?t read what I?m writing as an affront to anyone here...you all have given me so much truly priceless support & feedback and you all mean A LOT to me. Which is exactly why I?m trying my best to come clean with where I?m at; otherwise I?d keep my moderator hat on & leave it at that.

I?m posting as a sort of ?coming out??not so much for feedback or replies but just in hopes that people will get a bit more of where I?m at going forward. I really don?t want to just be told to stay positive & hopeful, that things will get better, that we all have ups & downs, etc. I am generally a very positive person & will never give up hope. My faith is very important to me and I truly believe that anything is possible but I have to adjust to my current reality in order to move on with the best life I can have. I am definitely grieving and having a rough time and won?t deny that for one second; I?ve had health problems for over fifteen years and a dysautonomia diagnosis for over ten but things are at an entirely different place now that is definitely requiring a different and constantly changing level of adjustment.

I am going to be starting IVIG treatments in July. They will run 4-6hrs/day for 3-4 days. The first time I will be hospitalized but subsequently should be able to receive the treatments at home through home nursing (though it will be a bit odd for my nurse to be here hanging out for hours on end for several days running!) The treatments will then be monthly and we?ll do them for at least six months to fully assess any potential benefit. All of my docs agree that it?s a crapshoot but worth a shot nonetheless. No one anticipates that it will fix all but I?ll take any improvement I can get. I?ll also be getting a Broviac line (a more permanent type of central IV line) placed while in the hospital to replace my current PICC line.

I hope my ramblings make some sense & I am going to try to pop up a bit more in terms of posting.

love & smiles & sunshine,

melissa

[Sophia3]

Melissa

Wow! I am surprised to hear of your updated dx but am not shocked. I know you have been one sick cookie with just the dreadful GI Stuff (that I can not EVEN IMAGINE dealing with) on top of a downhill struggle.

While I am familiar with severe limits that HAVE progressed and losing my own independence of my own apt and ongoing horrible $$ challenged that will not improve, and thanks to Medicare D drug plan, I can't afford to join LOSING MY FREE MEDS from drug companies, I have been in a major slump for my situation.

I tend to get into isolation mode or just post about stuff that doesn't have to be about my situation because it can be too depressing. ...so I just post occassional stuff or links or even jokes.

I am not going to EVEN PRETEND to be a cheerleader for you and say stay positive and all that junk. That can be so INSULTING when you are in a bad spot and having to remake your hopes/dreams/plans life and then downsizing and changing all things again...lather rinse repeat.

While I have no words of comfort for you, just know I am sending thoughts and prayers to you as you make your transition to move and change lifestyles.

Saying that sounds trite as ****, too, but it's what we say when we want to say something, isn't it?

Thanks for posting an update. I wondered how you were and sometimes sending a PM and having to answer it or feel one has too, can just be too much somedays.

All I can say is tie another knot in the rope and scream into your pillow and indeed, GRIEVE for what you feel you are losing...as it is real and valid. And only YOU know what it is like to walk in your shoes.

Take care

Sophia

P.s. Had to edit correction, at first I said TALK IN YOUR SHOES!!! meant walk...you are probably too young to remember Maxwell Smart talking into his shoes on GET SMART! lol

[DancingLight]

Melissa,

Thank you for 'coming clean' with your honesty and heartfelt post.

It is very hard for me, or any of us, to truly understand what you are going through. To me that is the strangest thing about this illness--the different paths we are each sent on with it. We all have dysautonomia but our day to day struggles and co-morbid conditions differ so greatly. I cannot 'understand' on a complete level what you are going through...I can only identify with the sense of loss and grief that you feel over a life that is NOT at all what you had hoped or planned for. I also feel great pain at over the suffering that you are going through...it literally makes my heart ache.

Even with your 'coming clean', I do not have a real sense of what these new diagnoses REALLY mean--both the autonomic failure and the mitocondrial disorder. If you feel comfortable posting more about them, please do.

You know if I had Harry Potter powers I'd fix EVERYTHING for all of us! (Wish it was that simple, eh?).

I, too, have been quiet on the board lately (we may lose our status as Top 10 posters which would be soooo sad!) as I struggle to make it through each day somehow. And, also to navigate the Lyme stuff--which, like you said with your situation, sort of makes me feel more 'separate' from other people's experiences with POTS.

I hope that I, and others, can help to 'hold you up' and 'sing your song for you' on the days when it feels like too much to do it yourself. I know that people on this board have done that for me many a time over the past two years.

We know, even when you are quiet, that you are working tirelessly behind the scenes to help keep this forum alive and safe and wonderful. THANK YOU.

You are loved and cherished here...

Emily

P.S. Sophia and I were posting at the same time...and I just read her post and realized how many of us do the same thing--post on topics that keep us from really talking about what is going on with ourselves!!! An ah-ha moment for me--that is why I haven't posted the update I have been promising folks, b/c it's too real then.

[Dizzy Dame]

Oh Melissa! I'm crying as I write this because I can't even imagine what you're going through, but I'm sure it must be horrible. I'll be praying for you and you'll remain in my thoughts. Please let us know if there's anything we can do that might cheer you up.

Sending hugs and prayers your way,

Lauren

[Sophia3]

Melissa

I just saw dancing lights post and she said something about a song...there was a singer in the 80's that was a one hit wonder country singer...Teri Gibbs ..she was famouse for "somebody's knocking" but on the flip side of that 45 (I am showing my age, I KNOW) was a great, wistful song called "Somedays, it Rains All Night Long."

I wish you could hear the MELODY as it is a beautiful song..but I remember these lyrics..

Sometimes I know, how the melody goes, but I don't know the words to the song

Somedays go by, not a cloud in the sky,

Somedays it rains all night long....

That song title, if you can understand it's meaning, often sums up the life of many of us. Not to go off topic but there are some great obscure songs that sing of my life...

Rainbow Sleeves is another favorite of mine.

Just be yourself and post as you see fit, Melissa.

Or NOT post!!

p.s. OR I pull out my Angry Kitty photo and shoot away!

[Jacquie802]

Melissa,

Thank you for coming clean to us. Even though we may not be able to do much to help you healthwise, other than offer support, I know I can speak for all of us when I say that we are all here for you, ALWAYS! I have missed seeing you on the forum, but there is no doubt in my mind that you have been reading each and every post.

I hope and pray the IVIG treatments help you out once you start receiving them. I haven't met you, but I know you are a great person....I'm keeping my fingers crossed.

<3 Jacquie

[dizzygirl]

wow melissa.. i'm not quite sure what to say.. while its good that they have figured things out...it comes with its own set of emotions that is for darn sure..

I know that you have got to be grieving for many reasons..if you need anyhting please do let me know!!! I can come by and visit you when I'm in toledo next month.. keep you company for a while.. I'll bring moveis and music to make you feel better if you want!!

take care dear.. and let us know how you r when you can.. and remember to put yourself first deary!!

big hugs

linda

[Poohbear]

Hey girl!

Thinking of you and sending lots of hugs your way. I do understand and relate to your talking about how you feel isolated here, at least to a certain degree, because your diagnosis is different than the average person.

Please remember though that there are at least a handful of us that are dealing with many (certainly not all) of the same issues you are. It just seems to be a small percentage---good for them but frustrating when you are trying to find people who truly 'get it' I know!!!

I'm sure you know you are missed and cared about here (and it never hurts to remind you of that either )

I'm only a phone call away

[nadine]

Melissa-

I just wanted you to know, as a new member, that I have really enjoyed reading your posts. I hope that you will continue to educate, inform and converse freely when you are feeling well enough. I have great admiration for those working so hard to keep this forum going. I am not sure how the admin. team manages it when they are also battling their own health problems, such as yourself.

You seem to have an amazing outlook on life, a wonderful family and deep faith- but everyone still needs time to just absorb, process and grieve what they are experiencing. I think if people were more specific with some of their experiences and stories, we would find that we have even more in common. It is difficult to write and express our true feelings sometimes, for many reasons, but I am glad you did-even if it takes several attempts at rewriting. I also do lots of rewriting-as the brain just isn't working like it should these days.

I wish you the best as you enter this next phase of treatments.

[morgan617]

I'm sorry Melissa....take care of yourself. morgan

[Ernie]

Hi Melissa,

I can tolally relate to what you are going through. What I find the most difficult when I answer is when someone desperataly wants to hear that they will be cured. I cannot get myself to write something like that. I know my disorder is genetic and I never will be cured so for now I cannot see any further than that.

Thanks for your honesty.

[michiganjan]

Melissa, I was wondering about you. I knew you were struggling. I am sorry you are having it so tough. I am going through greiving too. Jeff just passed his one year anniversary with cancer and I am grieving all over the place. We will never get back what we lost, so grieving is a necessary part of the process.

I can only hope that knowing about the mitrochrondrial involvment will help in some way.

You have my best wishes . . .

[mom4cem]

Hi Melissa,

I was sorry to read about how you have been feeling but happy to hear from you. You have helped me in the past, I wish I could do the same.

Please know that I keep you in my thoughts and wish you only the best.

I look forward to reading more from you. You are super

[ksibert676]

Peace out

[MightyMouse]

Melissa, you know I'm with you... and all I can say is thank you for trusting us to share the journey with you.

Nina

[Guest Julia59]

Melissa,

I appreciate your post, and I wish I could find the right words to say. Through the last five years or so I have met all kinds of people with many different forms of dysautonomia, and other disorders/diseases.

So many have lost some things in their life, but on the other hand have gained some things, like new friends who "understand" the best they can, wisdom, and a new sense how how precious life is, gaining a new appreciation for even the simple things in life.

I have followed your posts----and prayed for you along the way. I'm comforted to know that at least they have some knowledge on what is happening with your health, and they are able to begin some treatments to give you a better quality of life.

I can't say I know what you are going though, but I can relate in the part of multiple things going on, and having a difficult time knowing what is causing what. It can be frustrating and depressing.

I admire you for how strong you have been through this. I know there are moments we need to break down, that's just human nature---it's part of the process of living with chronic illness.

I wish good things to happen for you----

HUGS,

Julie :0)

[MomtoGiuliana]

Melissa

Thank you for sharing what is in your heart and what you are facing. I am so sorry. I hope we can continue to be a source of support for you, as you have been for so many of us. I will be thinking of you and hoping the new treatment, that sounds very difficult, will bring you some relief.

Katherine

[yogini]

Melissa,

Thanks for letting us know. I hope the new treatment will be helpful. Thinking of you -- please keep us posted when you can.

-Rita

[Sunfish]

thanks SO much for all of your thoughtful words...both here & in emails/PMs. i will write back but it may take me a bit so wanted to put out a general thanks at least first.

sophia -

your words were not trite at all...

and while i have no clue who maxwell smart is, i did have 45s myself. granted they were disney songs, but i did have them thanks for that song too. i actually was even able to find a clip of it online to have a listen. i LOVE music and don't know what i would do without it. i have spent endless hours playing cello & piano & singing in various contexts but haven't really been able to do much for awhile now. but i can still listen

em -

yep, we still need to figure out how to get the harry potter thing working...

and i love the "sing your song for you" phrase. it is so beautiful.

as for what the diagnoses really mean, there's still more unknown than known. which, as you know, can be one of the toughest parts.

if you're really up for a read, sites with good mito info are http://www.umdf.org/mito_info/whatismito.aspx and http://www.clevelandclinic.org/health/heal....asp?index=6957. the bottom line with mito though is that it's considered progressive but the extent varies greatly from person to person. treatment is hoped to slow progression &/or help relieve symptoms.

in regard to autonomic failure, there is VERY little written about it (if anything) in the research for younger folks. so again it's considered progressive but the rapidity of that is entirely unknown. not one of my docs will really commit to anything other than acknowledging that it is time (or rather long past time) for me to stop school & move home, that things aren't heading in the direction anyone would like, & that the IVIG gamble is largely the last thing to try (at least based on what they know now) treatment-wise.

lauren -

please don't cry! (though i do hate when i'm crying and people tell me to stop....) as for doing something to help, when you make it big in the writing world you can get me an in with a publisher, k? i'll hold ya to it

linda -

i'm going to be in cleveland for a bit longer still...both to get more stabilized with the IVIG treatments & b/c i can't do the move myself so have to depend on others for the manual labor. my dad just having had a knee replacement slows that down a bit as my mom is having to juggle tons at once. as for the when i'm moving exactly, i wish i knew. i'm at the point where i'm not fighting it any longer so am ready to just get on with it, ya know? i have tons of stuff though after ten years on my own so the packing/moving is quite a project.

pooh -

i do know that there are others that can & do get parts of what i'm dealing with...otherwise i may not have posted at all. and of course even when situations aren't identical that doesn't mean some of the issues can't be (grieving, loss of independence, etc.).

karen -

even though it's a bit different when used for different reasons, i'll definitely be in touch to pick your brain about the IVIG. thanks for the offer

thanks so much to all of you for being willing to put up with me as i embark on the next steps of the journey.

melissa

[corina]

melissa,

i've been reading your "fishbowl" update some days ago. it took me some days to reply. as always, i worried about understanding/misunderstanding and was afraid of using the (in)correct words.

i really want to thank you for your honesty as for the link to "whatismito" because i don't know what this really means and i couldn't find anything about it in my own language. i now understand that it's progressive and i will check your link out, as i want to know what's going on.

like katherine said, i hope we can be a source of support for you as you always have been and still are to so many of us. you are in my thoughts,

corina

[wareagle]

Melissa,

I don't really have anything to add...everyone has been so eloquent with their posts.

Just please know that I am thinking of you and we are always here.