One Of Those Days... Bad Day And Feeling Sorry For Myself..

[jenglynn]

Most days, I try to keep a positive and upbeat attitude,especially for my family. I try to devote only a certain amount of time daily to research or the forum (although so often you guys cheer me up!!) I realize that if I spend too much time thinking about it, then I will start to obsess and then self pity follows. I try to read happy, funny, or inspirational material. Watch funny movies. Listen to music I love. Spend time with my family. Not sure what has gone wrong today- but all I can think of is what I "can't" do.. Which is not productive, I know.

I am so tired of living my life like this. It's been almost a year since my first "symptom" of this flare- in April- and it just kept progressing to where I am now. Bedridden unless I crawl. I've tried so many medications and some to a degree have "helped" I guess, like Midodrine, but not enough to significantly improve anything. In Nov. when I was admitted to the hospital for the first time, I could stand for about 30-60 seconds before syncope- yet here I still at the same place, after being in the hospital from Thanksgiving to Bew Years! Tachy is still the same. I have had 9+ concussions and diagnosed with cognitive dysfunction and I can't be upright at all unless there is someone right there. I walk every day, around the house with my husband, but I don't get far I know I will get worse if I'm never vertical so 4x a day, right by my bed, Rob stands next to me while I go from lying to sitting to standing. In all these months- nothing has changed. My HR has never lowered and BP has never stabilized and I'm still unconscious at about 45 seconds. When is this going to change??? I rejected IVIG so my big hopes of that working are gone. I keep losing weight, along with cognitive skills, and my organs have been suffering (bladder, kidneys, thyroid, liver,) I m 38 yet feel like 90- developing incontinence. That for some reason has been the hardest to take. Like most of you I suffer daily from miserable adrenal surges that are so anxiety producing I know I make myself worse just anticipating them. Now I've started getting twitches and spasms. My head hurts ALL the time. My body hurts ALL the time, and worst of all I feel my spirit starting to hurt because I feel as if I am just wasting away.

I know this pity party will do me NO good and you all are going through this or worse, but I keep wondering praying... "WHEN will I get my life back???" I feel like I'm on the sidelines of everything and I'm letting my kids down because I'm not an active participant anymore. My ability to sit has even decreased. I can sit upright maybe 20 min. Before BP plummets and HR will be 160+. I do my recumbent bike everyday, I faithfully do my bed exercises twice a day- 30 min each time. I guess because I'm waiting for progress, not seeing any is discouraging. I'm so weary of doctors and hospitals and having to repeat my story and explain my condition. Yes, I have auto immune mediated autonomic neuropathy, connective tissue disorder (likely EDS but testing not done) and an autoimmune disorder that is very aggressive but no clue what it is other than MEAN the way it is constantly attacking my organs... Even at Mayo- they call me a medical enigma- they say they have never treated anyone who's body has reacted to autonomic/autoimmune issues this way.

Ugh. Sorry- didn't want to be a downer but today just happened to be a hard day. There is a lot going on and this is our annual family trip to Minneapolis for the State High School Hocket tournament. We go every year as a family and look so forward to it (our 2 boys play hockey and 4 girls love Mall of America and for the first time in ages- I'm not going- but I'm insisting they all do. Life needs to go on and they've made enough sacrifices- but missing it is just another sign of what is lost. If I even had a glimmer of hope- I would grab on with both hands, but when I talked to my Mayo neuro he is still not sure what to try. He doesn't think any immune therapy will work because my autoimmune antibodies are so aggressive. Most days I'm able to banish these "Poor Me" thoughts because they will do nothing to help and I'm sure 20 minutes from now I will be my old self again- guess I just needed to vent a little. So grateful to have a place to do so to others who understand what I'm going through. And if anyone has suggestions of therapies or treatments that worked for them, I'd love to hear them. And to leave this on a more positive note, if I were to literally sit down to count my blessings, it would take all day. I have a lot of love and support which with this condition, is priceless. Thanks for reading, you all are priceless too and I'm so proud of the way all of you courageously battle this illness every day and never give up.

I really hope that someday we can cure this- or at least find a way to manage it successfully. In the meantime, I will be grateful for everyday I'm alive and realize that I am more fortunate and blessed than so many others and should not complain.

Jen

[jangle]

Jen reading your story has brought tears to my eyes. Im a fairly manly man too. Being called a medical enigma at mayo might make you feel isolated but we're still here for you and you shouldn't ever feel discouraged from venting. It's not a sign of weakness I see a lot of strength in the way you nonchalantly seem to riddle off a host of living conditions that no one I know could handle including myself.

I wish I could suggest something. The only thing I can think of is stem cells but progress in that research isn't there yet. I did read an article that losartan was effective in treating connective tissue defects such as in marfans syndrome by reactivating a signaling protein to restore structural integrity to the connective tissue I have no idea if that could help you but it might be worth a shot. The autoimmune issues I have no idea what to say.

Please hang in there and don't give up. Something brought you to this place and so if you take that path backwards you can get out. We're here for you Jen

[roxie]

My heart breaks for you Jen.

Sometimes we have to feel the sadness in order to let go of it.

I wish I had better words of wisdom. 

I've been bummed out myself too. I'm doing everything my dr'd have said and I'm surviving but I don't feel good. And its like when is it going to let up???

As far as treatment, idk, you've probably got all the med stuff from dr's. 

Have you tried deep, diaphragmatic  breathing practice? It's not going to cure anything but it may help you feel more at ease and in time with regular practice settle your heart slightly. 

The other thing is you're trying to be upright more is a sort of tilt training, but scaled down. Instead of going from sitting to standing. Maybe put an extra pillow under you so your up a tiny bit more.  see if you can get used to that. Then, when you are ready prop up another pillow and so on.

I don't know how effective it is but I'm trying it for myself. I spend most of my days in a recliner. 

[issie]

I'm with Jangle, Jen - my heart goes out to you. I wish we had an answer that could at least give you some sort of relief. Just know that you are in my thoughts and I'm hoping for something that will be of GREAT benefit to you. We all have periods of getting down with this - despite trying to be positive. It is okay to talk about it and it's okay to feel these things. Your life has greatly been impacted and I think you're pretty amazing to be as positive as you are. You, believe it or not, are an inspiration to me - to continue on despite whatever life brings. I see your determination and your strong will and it gives me courage to continue - despite things. I have a tender heart and realize I'm shedding tears for you - right this minute. I so hope you get the strength you need to continue on and handle whatever it is that you need to handle. I myself find great comfort in reading the Bible when I'm in a bad place. The Almighty is a wonderful God and he truley does care for each one of us. I'm sure he has taken notice of you and the trials that you are going through. Wish, I had a way to take away your pain - but, realize I do have deep empathy for you. (((((((HUG))))))))

Issie

[arizona girl]

Hi, Jen, Big Hug! I know how exhausting this can be. Been there last time I gave up, my colon ruptured and my surgeon required me to find out what was wrong before he did an elective resection on me, I thank god for him.

Have you had or have they offered you plasmapheresis yet? I had that first and improved and I was with a lady that had polyneuropathy who also couldn't do ivig and she had been on pheresis for 20 years and it has kept her going. It is my back up plan, if things get worse for me.

Mayo or your particular neuro isn't the last word, there are other doctors that might help you. There are many non mayo doctors that don't always think mayo gets it right. Though when they are good they excel. I know another doctor seems daunting. You need fresh eyes on you. Your neuro may have realized he made a medical mistake with you and is worried that you might file a complaint, which means he can't help you any more. I know that my neuro here in phoenix runs a lot of rare disease tests and he communicates with other neuro's that do what he specializes in. Perhaps you can call their office and find out if one of those docs is close to you. You could also try and come here for testing. They treat MS, AlS, stiff persons syndrome, aggressive neuropathies just to name a few. IVIG is one of their treatments, but they have many different types of treatments and even do clinical trials for ALS and MS.

Take a look at their website at Phoenix Neurological Associates. Read their info and then google the diseases they treat and see if any of them fit you. Also Northwestern in chicago is doing stem cell work with patients with autoimmune disease. My nurse's wife had schleroderma and she had stem cell replacement (an ordeal) but, it seems to have cured it and after 3 years it had not returned. I'll have to check in at the hospital and see if she is still doing well. She is a nurse too.

Also Mayo has a patient liason's department that you can contact about your care and they will help you facilitate your care with them when you are having a problem. Which I think you are. I'm here for you, you just pm anytime. I will help if I can and I'm really sorry things didn't go well for you this last round. It can get better, I am witness to that, don't give up or in. If the time comes and there is nothing left that can be done (which you are far from), then there can be peace in accepting. Your not there yet. We aren't ready for you to give up yet. Talking about your problem and bringing it to god and asking for help is not complaining. But, you are right that you are not your illness and can decide to not let it rob you of your joy. Finding the blessing in hardship can really lift us up and bring joy. There is I think always a silver lining somewhere to be found. xo big hugs!

[HopeSprings]

It's not a sign of weakness I see a lot of strength in the way you nonchalantly seem to riddle off a host of living conditions that no one I know could handle including myself.

Same here. I think you're incredibly strong and have a great positive attitude. Totally understandable to get upset about this from time to time! (((more hugs for ya)))

[puppylove]

Reading this brought tears to my eyes too- but don't give up!! If there's one thing I've learned about POTS is that it can change in an instant. Keep reminding yourself that tommrow could be the day you wake up and feel better. I agree with everyone that everybody needs to vent and feel sad sometimes- that's what we're here for! Don't feel bad- you're not being a downer. I also admire how positive and grateful you are too! More (((((hugs)))))).

[sue1234]

ALWAYS keep hope!! You never know what is coming around the corner in the medical field!! You have lots of ears here for times like this, so vent away.

Just a thought--have they tested you for Addison's disease?? Just to make sure that hasn't been overlooked, as the body just shuts down without enough cortisol.

[sue1234]

And, not just a morning cortisol, but an actual Cortrosyn(?) stimulation test.

[L4UR3N]

Mayo or your particular neuro isn't the last word, there are other doctors that might help you.

I could not agree more!! If your doctor doesnt know how to help you, then it's time to go elsewhere to one who does. No matter how rare a condition, there is always someone, somewhere that knows something about it. Keep searching and dont lose hope!! <3 <3 <3

[issie]

I so much agree Jen, you need a different doctor. When I was having such severe issues, about 4 years ago, my first diagnosis was Parkinson's. But, the meds made me worse. So, then it was multiple system atrophy - which, was not something at all that I wanted to hear. That's when we loaded up and headed off to Mayo and I got the correct diagnosis of HyperPOTS, EDS, probable MCAD and all the other stuff that is going on with me. If I had stopped with the one doctor who kept mis-diagnosising me and giving me the wrong meds (that were making me worse) I don't believe I'd still be here. So, maybe - it's time to look for a new doc with some different ideas of how to treat you. HANG IN THERE, darlin . . .we're all pulling for you!

Issie

[jenglynn]

Thank you!!! Today is a new day and I do feel better. I try to never take life for granted because we've all lost people too soon and we at least have our families, hope, whatever our spirituality may be.

I guess one of my issues is I'm dealing with Mayo. They had decided to do some kind of case study on me so I know they aren't "giving up" but because of my IVIG failure/rejection now they are trying to figure out what to try next. I hate to say this but it's almost as if the results of their study are more of a factor than my getting better. I hate to think that way, but I was supposed to have my follow up this month after they could safely assume the negative affects of the IVIG was out of my system. I was told this week that my labs still show some abnormal functions in my kidneys and now we should until the end of April. Why not try to figure out why my kidneys aren't getting better NOW.. That makes more sense and why don't you see me THIS month, as planned, to at least give me some ideas of where I'm going treatment wise. My neuro at Mayo- the main one I see who works directly with Dr. Low on my case (how can I complain, right???) is very nice, but dismissive. He is busy- I get that- he's a researcher and sees patients.

At the hospital in my home town, there is only one neuro who will see me. No one else would even TALK to me because of liability. I like the doctor I see but he sees me ONLY on the condition that we work with Mayo and he isn't primarily responsible for making treatment options. It is frustrating. Only my general doctor and EP Cardiologist both who have formed close attachments to me during this diagnosis process- so I get a lot of help from them- trying new meds , etc.. But my general doctor just had a baby so she's out of the picture for 5 more weeks. I guess I just feel, like I said, frustrated- I understand I have chronic, complicated illnesses- but I e got to think there an answer that doesn't involve being bedridden or crawling around on my knees forever. I don't expect to feel perfect, I would take somewhat functional.

I've been wondering if I should explore other specialists... Cleveland, Vandy. I guess I don't know what to do. I know I'm lucky to have gotten this attention at Mayo and I should not just hastily say goodbye. But when I got that call yesterday delaying my follow up for another month, I was peeved. Maybe I just need to make an appt. for a phone consult with my neuro at Mayo and ask him questions. That is probably the best way to go at this point.

Thank you all. Your support means so much more than you know. I have a supportive family but no one understands like you guys, because as much as I dislike this fact, you are going through this too. We're in it together.

Jen

[kmichaelson]

Hi Jen, I'm glad to hear you're feeling a bit better today. I'm the same way where I try so hard to stay positive, but when you feel so bad I think it's impossible not to get down at times. I hope you can find the right team of doctors... sorry I don't have any constructive help for you, but I feel for what you're going through and wish you the best. <virtual hug>

[Hoosierfan]

Jen, I agree to that you are so much an inspiration to me. I've let a "boo hoo me" attitude get me down dealing with much less, so you've inspired me to pick myself back up. I ditto the "deep breathing practice" that others suggested. The program that I follow is the "Full Catastrophe Living" program from UMass -- there is a book and a set of CDs that guide you through a daily meditation and body scan (that is done laying down!). And, it has help me with the anxiety issues. ((Hugs))