So Sick Of This

[GingerA]

I guess I am just venting but I am SO TIRED of living this way!!!! Is anybody feeling better? When I got my diagnosis in April the doc said that I would feel better in 6-9 months. In that time I have lost my job because of this and now I just do not know which way to go! I have to make a decision today about interning for school. I have been working on my BA in Early Childhood but now I have to intern or quit! I just want my life back.

[s-pot]

Aw Ginger A...my heart goes out to you! I really do kno how you are feeling at the moment. Was diagnosed the same time as you and have done my best to keep everything going and keep positive. But Alas....im very fed up too now!!

Starting my internship as a midwife in Jan, just trying to complete my last couple of weeks of theoretical work now. AND its worse im getting not any better . I dont kno how im going to manage it I just kno I havto stick to the mentality of one day at a time....who knows what may change for the better in next couple of weeks (or worse!) but i stick to the motto that I cannot tell what will come in the future and can only deal with what is happening today!!

So GingerA yes it is horrific n horrible to keep dealing with this...but dont give up on the things you have worked so hard for. Take each day as it comes, dont make any huge decisions with regard to your future based on how POTs is ryt now....go with what YOU truly want to do and try not to let the illness rule your future.

best of luck with whatever you decide and i hope things improve soon.

[brethor9]

I can relate too Ginger!! I have had this for 4 years! when diagnosed in May was told in 6 months things would be better.....they are soooo not better they are worse! and my new internist says he thinks this will be a lifelong illness and cant predict any kind of prognosis yea!!! I also lost my job contract this week as a oncology ward clerk...I knew it would happen eventually but it still makes me very sad....I am slowly losing everything that anchored me as being a normal person Hang in there.....hugs

Bren

[HopeSprings]

I know - it's so hard to make future plans with this thing. I can't even commit a day in advance in some cases. What would the internship entail? How many hours a day for example? This is easy for me to say, but if I were you I would try to do it. I went through graduate school while very ill. Don't know how I did it, but I did and graduated with honors. We find ways to get through things. I think if you don't try, you'll feel even more upset about the illness. Of course only you know your body and sometimes no matter how hard we try, we just can't. Is it possible to talk to your professors and ask if you can do the internship on a modified basis? Maybe something can be worked out.

[GingerA]

To intern this quarter would include 10 hours a week in a classroom of 20 preschoolers. But the hours would go up every quarter. Some days i think I can do it but some days I can't even get out of bed. After a mini breakdown this morning I put in a call to my adviser to ask if there I could put intern off one more quarter. The main question I have is should I even stick with the major? Can I work this field after I graduate? My hubby has been great this morning with lots of ideas on how I can work this out. I just have to accept that I can't do everything I use to do. Just 2 years ago I worked a full time job, raised three kids and took an overload at school. Now I have a hard time getting the laundry done.

[jnew]

It seems everyone is told they will feel better soon. I am new here, but I'm feeling worse all of the time. I too, am so sick of it. I grieve everyday for the loss of my life.

Prayers for all of us,

Julie

[juliegee]

To all recently stricken-

I know how hard it is. I have been incredibly weak, sick, and even bedridden for multiple extended periods in my life. BUT, you really can get better. I function so much better now- (probably 75% of normal) and I am so grateful. Finding out WHAT is behind your POTS and treating that seems to be key.

I have no helpful advice for your current dilemma, Ginger- so many variables on time frame, etc. I do firmly believe that you can get better...not sure how long it will take.

Keep the faith. Better days are ahead.

Hugs-

Julie

[GingerA]

Thanks Julie (Mack's mom),

I didn't know that you had this too. I just knew from a conversation that we had the other day that your son had this problem. (My son is the one that is now showing symptoms too). I talked to the adviser who fixed the classes so that I do not have to intern for at least another quarter. It will just set back my graduation. Maybe another by then I will feel like being in the classroom.

I do believe that if I can find out what type of POTS I have and what is behind it, I can feel better. I just don't know how to get anyone to help us.

I hear everyone talk about this test and that test but all I got was a doc who said "you have POTS. Eat a lot of salt!"

At the time I was so relieved to have a diagnosis that I didn't question it. Now I need more answers!

Jnew,

Don't give up! This is not going to beat us!

[juliegee]

Yay!!!! You got the internship pushed back- Congrats. THAT will give you time to figure out what's going on and recover.

Yeah, I'm a slow learner I'd been pretty sickly my whole life, without really knowing WHAT I had. I ended up hospitalized for weeks at a time when things got too crazy, but my illness NEVER had a name. Then, when my son became ill (at 12 y/o)- I fought like a Mama Bear and I finally got answers...and a name for my own illness. Pretty convoluted- huh? I remember when he was a baby, I'd be so sick, I'd be crawling on my hands and knees to take care of him, but NEVER bothered to figure out what was wrong with me

I never had a doctor take the "bull by the horns" in figuring out the cause of my illness either...so I did, eventually I started on the DINET "Causes" page and found certain disorders that seemed to most closely fit my specific set of symptoms. I sought out specialists in THOSE disorders and finally started getting answers. From hanging out here, I have learned that it is VERY unlikely that a local PCP, cardiologist, or neurologist will help most of us. Unfortunately, that rarely happens.

I learned that I have a connective tissue disorder, most likely EDS III, and a mast cell disorder that BOTH contribute to my symptoms. I have figured out lifestyle changes and a med regimen that renders me almost normal.

No one cares more about you recovering than YOU. You have to become your biggest advocate. Research, research, research. Ask questions and fight for confirmation and validation from docs who "get" it. I don't remember what was your trigger, Ginger. BUT, the one generalization that I can make is that some assault (accident, illness, emotional trauma, etc.) has occurred to your immune system and it is most likely over-reacting in response. Be as kind to yourself as you can be. Eat the healthiest, most natural foods that you can. Drink water, vitamin water, G-2, mineral water. Sleep as much and as often as a Mom of 3 can . Baby yourself....and push yourself to become more active in a gentle way. Walk a bit and rest. Try a little further the next day, and so on. I KNOW better days are ahead. This is not forever.

Julie

[Katybug]

WOW!! Julie, you said everything I was thinking but in a very eloquent way!!

I am not better yet, but, I have put together a great medical team and they take getting me better seriously. They were not the first docs I saw, but I kept searching until I found them and it has made all the difference in my dx, tx, and my mental outlook. One thing I have also learned...when you find one really great doc...they usually hang in packs! So, now if I need a new specialist, I only see people that either my cardio or my POTS/Neuro recommend. I ask them, "If you had this and had to see a ______ specialist, who would you go see?"

I have had to give up working and training horses which has always been my hobby/second career, and, this part of this whole strange disorder has been really sad for me. But, I have also learned that gifts often come in strange packages, and sometimes, it takes a while to see why we had to go the hard route to get to the good part. My level of conscientiousness and clarity about what is important in life has really been taken to a whole new level by my new limitations.

I hope everyone is able to find some thing of value to hold on to and is able to forge a new path in their journey.

My thoughts are with all of you,

Katie

[HopeSprings]

Good for you- what a relief! Happy to hear your advisor was flexible on this. Hope you'll be able to figure things out or feel better (even a little) in the meantime.

[jnew]

I'm so trying to be hopeful. I'm going through benzo withdrawal at the same time. It's hard to know what is from what. I just feel so sad and hopeless all of the time. The Holidays are bringing on greater depression as I am basically unable to function and won't be able to shop, decorate, cook, or enjoy my family. This is the first year for me with this. I just am in shock.

Hugs to all,

Julie

[juliegee]

Julie-

It's perfectly normal to grieve. This might be hard to grasp, but this stage will NOT last forever. Pretty soon you will move on to the next one. We all go through stages when dealing with traumatic changes like this. You have lost a lot. You are searching for your "new normal" and praying that this isn't it. It is especially hard when you juxtapose what you are going through against the holiday backdrop. You feel guilty for not fulfilling your old responsibilities, etc. Your NEW responsibility, at this very moment, is to take care of you. Curl up with an old movie. Sip vitamin water. Eat as healthily as you can. Snuggle with your cat, dog, honey, kids, etc. You get the picture This is a time to make YOU a priority. Your house may not be decorated to the nines, your family may have to bring take-in for the holiday meal, you may have to skip gifting & sending out holiday greeting cards. But you might discover a deeper meaning to the holiday season by spending quality time with your loved ones.

I'm at a point with my illness where I can see it as a blessing....at least on some days. It's made me so much more tolerant of everyone. We truly have no idea of what is going on with anyone just by looking at them. It's taught me who my real friends are. It's forced me to focus on what really matters to me rather than trying to fulfill obligations and spread myself too thin. It's taught me to advocate for myself & my family members. It's taught me that I am important & deserve to be taken care of. You are too. Better days are ahead.

Big Hugs-

Julie

[Clairefmartin]

I know - it's so hard to make future plans with this thing. I can't even commit a day in advance in some cases. What would the internship entail? How many hours a day for example? This is easy for me to say, but if I were you I would try to do it. I went through graduate school while very ill. Don't know how I did it, but I did and graduated with honors. We find ways to get through things. I think if you don't try, you'll feel even more upset about the illness. Of course only you know your body and sometimes no matter how hard we try, we just can't. Is it possible to talk to your professors and ask if you can do the internship on a modified basis? Maybe something can be worked out.

I agree! You have to do what you are comfortable with, but POTS and many dysautonomias wax and wane - I actually had 3 good years where I led a completely normal life. But before that I had to leave my teaching job because of all the standing and stress involved. I've had POTS and a bunch of other stuff since 2003, and I can tell you that its different month to month, week to week, and many times day to day. I just spent most of 2011 in the hospital while pregnant and almost died of blot clot complications, had to close my businesses, and missed my family terribly, and even now - I've been stuck in doors recovering for 3 months, still not able to get in and out of our place to go out, but I KNOW IT WILL GET BETTER. Chances are, you will feel better, many people go into remission or have swings triggered by different things such a myself.

Hang in there and keep your head up!

[GingerA]

It's perfectly normal to grieve. This might be hard to grasp, but this stage will NOT last forever.

I had not thought of this as a grieving process but you are exactly right Julie! Somehow that makes me feel not so guilty about being upset that I can't do everything that I once did.

[jnew]

I have this horrid feeling that POTS isn't the big problem. I fear it is much worse. Mine didn't start as tachycardia or low BP. Mine started out in June of 2010 with a sudden loss of cordination and balance. It happened just from getting up from the lunch table. I went through test after test.

[jnew]

Sorry, I hit post too soon. Anyway I got worse and now I have horrid gait problems and my vision is so blurry. I can't see well or get around. I feel so hopeless as I have searched through this forum and don't see these symptoms on here. I don't think I can do this much longer. I'm so depressed and tired of almost 2 yrs of drs and tests. I don't want to be a burden to my family. I fear it is the MSA.

Thank all of you for responding.

[MomtoGiuliana]

I don't think you are the only one who initially wondered about MSA. there can be a lot of overlap in symptoms. I believe that MSA is more common in men, middle aged and older. Women would be less likely to have this and much more likely to have POTS or some sort of orthstatic intolerance. Obviously you need to be tested and diagnosed by a doctor, but try not to get too fearful and discouraged. I know the unknown is so very hard to deal with.

When my POTS symptoms were severe I had gait issues. I guess it had to do with being dizzy, I am not sure. I also had blurry vision.

[brethor9]

Hi Jnew

My symptoms mainly started out like stroke-like symptoms.......lightheadedness/head pressure, balance issues, vision issues, numbness, etc.....so I think gait issues can happen with POTS.....it is crazy the multitide of symptoms this disorder causes......the ANS is responsible for regulating so much

Bren

[GingerA]

Bren is right. There are so many different symptoms. I have blurry vision at times and terrible brain fog. Also I have a lot of pain at times that docs tend to dismiss but I have read in this forum that many others have pain as well. That does give me some comfort in a strange way. Its like you are not crazy there are others out there that understand what you feel. It is just hard to me because I have doctors who told me that I would "be better in 6 to 9 months". They didn't explain that "better" does not mean the same thing as "totally healthy again".