I hate being a CP sufferer-at 30-vent!!

[CoolAngel28]

Guys-I'm too young for this crap.

Short history-will spare you the long version...

Chronic headache off-and-on,since I was young due to hydrocephalus diagnosis at birth.Even the mild ones get annoying.(I work part-time to prevent complications and keep my sanity.)

Here's the kicker-Mom and Dad are dead-set against me taking full-time hours,to help out financially..(They may be divorced-but,this is the one thing they agree on.)

I love them more than anything-but,there's the guilt thing,that my having an unpredictable illness,is something they shouldn't have to deal with.(30 year old women,aren't supposed to have unpredictable illnesses that no one can control..)

Sorry for long post-I've been sneaking in extra hours lately,but--don't know how much longer I can do that...

Okay-wrote a novel,but,hopefully someone out there,has been-there,done-that...

Kristin

[Kira]

I love them more than anything-but,there's the guilt thing,that my having an unpredictable illness,is something they shouldn't have to deal with.(30 year old women,aren't supposed to have unpredictable illnesses that no one can control..)


I can really relate to your post. I'm 29 and also have an "unpredictable illness that no one can control..." and it is a really hard place to be in.

I had to stop working several months ago and just recently started FINALLY getting checks from my disability insurance. My parents have both been helping me out a lot with the financial stuff, which they can't afford at all because neither has much money.

Plus, my mom has cancer and spent the past year going through several surgeries and a lot of chemo... and she is so stubborn & tough and kept working full-time through it all, only missing days when she was actually at the oncologist's office to get chemo or for surgeries. And here I am sitting around my apartment, day after day, needing my parents to help me with rent and bills and stuff.

I've got same work ethic that my mom has. It's how I got through med school and it's why I kept working for as long as I did. I had to let things get SO BAD before I could admit to myself that it was time to stop, at least temporarily... time to co-exist with my new, broken body. I still catch myself trying to figure out how I'm going to go back to grad school, or even how to somehow do a residency and get my life back. But there is this part of me that just knows that I can't do it... that it's just not going to happen...

That's really, really scary... I mean, what am I going to do for the rest of my life? I don't even have a clue how long the "rest of my life" would be. My disease is weird and unpredictable... I could get heart failure or kidney failure or encephalopaty any day now, or things could just keep plodding along they way they've been going and I could live to be an old woman.

It scares my parents, and it definitely scares me, to think about how I am gradually needing more and more help from them, not less and less like it is supposed to be at this point in my life. I know several young women with my disease who need pretty high-level nursing care at home, and their families end up taking care of them. But my parents are getting older, and my mom is sick, and we're all worried about "what if..."

I want so badly to somehow be able to toughen up and make myself get back to my career... do a residency somewhere, start dating again, buy a house, get a dog, have a kid... and have everything turn out the way it was supposed to. I want my parents to be able to quit worrying, and *I* want to be able to quit worrying. I want to get up in the morning and go just do SOMETHING all day. I want all of the boring little day-to-day details that fill up your time when you are working. And I want to be able to make plans for something a week from now, even just some stupid little errand, and know that I can depend on my body to work well enough that I can actually keep my plans.

I don't want my parents to have to worry about "what if..." I hate being such a burden to everyone I love. I want everyone to be able to sit back and quit worrying, at least for a little while.

[jtroy]

Hey Kristin:

Saw your post had to reply....I am also 30 something (33) been doing the cp thing, ironically, like you it is severe, constant head pain. I hate the term headache...a headache is something a couple Tylenol takes care of. You and I have head pain.

I was a veterinarian with tons of wonderful clients who absolutely adored me and my mission was helping people through their pets which are like family. I had cluster headaches for years (al through college) that started before Imitrex came out on the market. When it came out, a shot at the onset was 100% effective and would abort all headaches within 90 seconds.

The luck ran out months bf graduation and the Imitrex completely quit working. Also, the cycles were no longer but the pain has never gone away since. So, as it turned out I actually started this cp journey in my 20's.

Head pain is a tricky beast....we all have different types, triggers, diagnoses, etc....at the end of the day, when it takes 3 fentanyl patches and Methadone along with other meds to be able to manage the pain there are certainly helpless moments.

I'm sure you have seen many neuros, pm docs, etc...a word of advice would be to try and continue the journey even though you may not get answers. I've learned things from different docs even though they couldn't offer the "cure"////

If you ever want to just vent, talk, ask questions, feel free to email me at: tjandfon@hotmail.com..........I've been doing this now for going on 7 years disabled and probably 15+ years with head pain.

I was lucky enough to have a wife who made sure I never cancelled my income protection insurance while in practice....my hard head took me a year to finally admit I am disabled....it's still hard to type or say. However, my ins co didn't even question the claim and I've gotten 75% of my prior income since I applied....I assumed they would say, "take and aspirin and get to work" which seems to be the common ideal when it comes to head pain.

I wish you the best....and I will keep you in my thoughts and prayers. Feel free to email anytime.

Regards,

T. Jones, DVM

[Mark N]

Kristin, Kira, and Troy, I am sorry you are all dealing with this and I can see much of myself in your post although many of our problems are different. I am thankful that I could achieve some great things in my short career so I at least have that to look back on. All three of you had worse symptoms than I did early in life [I was experiencing spinal problems from age 22 on] but I do understand the impact pain has on our lives. It is very tough to deal with so much pain by the time you are thirty [the age my spinal pain became severe] as we wonder what our life will become if it is this bad now. Kira, your situation is especially tough but all of us have pain as the common factor.

I wish I could paint a rosy picture for each of us but the reality is that each day will be tough. The best we can do, short of medical miracles, is to do the best that we can each day. It is difficult to see much good in a pain filled life but there are days we can touch someone else's life and that is a good thing. Hang in there as the bad days lift to allow us some "good" days now and then.

[GardeniaGirl]

hi there Kristin - welcome to the forum.

I have shared my story many times here at BrainTalk - but, briefly - I can definitely understand what you're going through.

I started getting seriously ill when I was about 27 - I am almost 39 now.

So I have pretty much "lost" my 30's to being ill and in pain.

Its very hard to live a life like this and to come to terms with the limitations and restrictions that come with it.

I still have many days where I feel like "I just can't do this anymore" - but yet, here I am.

In some ways I can't really believe I have lived over a decade being so sick and in pain-

I also understand the guilt you feel.

I get financial assistance from my father to supplement my part-time job and it has taken me almost 10 years to get to the point where I no longer feel guilt over accepting the help.

I am finally over that hurdle, but I spent years hating the fact that I was an adult and still depending on my father for support - I had always been such an independent, motivated person - so it was really hard to accept the limitations my disease has placed on me all these years.

Anyway, I think this is a hard road to travel in life - I doubt an person who has been down it would disagree.

Forums like this have helped me a lot.

Take Care
GardneniaGirl

[Kira]

It is hard enough to deal with the prospect of pain/illness/disability that's not going to go away... But it is exceptionally hard to have to come to terms with these health problems now, at the time in our lives when society expects us to go out and get jobs and buy a house and get married and have kids and so on. But, trying to do those "normal" things just doesn't work anymore, thanks to our broken bodies.


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Troy, I hear what you are saying about "head pain" instead of "headache."

I get recurrent attacks of rhabdomyolysis due to my mitochondrial myopathy. As you may know, rhabdomyolysis is extremely painful and is NOT just "muscle pain" or "muscle aches."

When I'm at the ER for rhabdomyolysis, trying to explain my chief complaint to the triage folks, it's frustrating. I try to tell them that it is so much more than "muscle pain" and that it is a medical emergency requiring hospitalization. I try to call it an "acute exacerbation of mitochondrial disease" and try to mention all of the bbbaaadddd stuff that can happen if the rhabdomyolysis isn't treated quickly and aggressively (kidney failure, compartment syndrome, electrolyte disturbances leading to arrhythmias, tetany (severe spasms), paresthesias, metabolic acidosis, altered mental status, etc). But the triage clerk will just ask, "Uh-huh, but what symptoms are you having from this acute exacerbation of, what disease did you say?"

And invariably, no matter what I say or do or don't say and don't do... The triage clerk writes "muscle pain." Then, inevitably, all sorts of idiots with colds/coughs get seen before me, because their charts say "can't breathe."

I think that it is most frustrating because everyone thinks they know what I'm experiencing if they've ever had muscle pain from some cause or another. They compare it to that time they pulled a muscle playing touch football, or feeling really sore after helping a friend move. I have experienced that kind of muscle pain before (was on the varsity swim team and did middle- and long-distance events). And I can unequivocally say that it is no where near the same intensity or character.

But it is hard to convince them that you're talking about a completely different thing than the muscle "discomfort" they get after shoveling the driveway or going for a jog. So they are convinced that you will be "just fine" if you just do what they do what they're achy... and you get bombarded with suggestions that would not do a damned thing to fix your crazy-hot-raw pain that just happens to be located in muscles. It is not "just muscle pain," and it isn't going to go away if I take a hot shower or do a couple of stretches or take up yoga or any of the other million little suggestions. In fact, if I wasted time on their little suggestions, the risk of kidney failure from my untreated rhabdomyolysis would increase significantly.

Anyway, I am rambling... but the whole "headache" vs "head pain" comment really caught my eye, because I face a similar issue with "muscle pain" vs "rhabdomyolysis."

[Mark N]

Kira, I can understand your frustration with the way your issues are described by ER personnel. I solved most of my problems with people that seem to know just what I am going through because they have had back pain. Finally I came up with saying I have a spinal disease [which I do] because disk problems lead people to believe I have been injured. I know you are trying to come up with a way to get the message across and I hope you can come up with a medical phrase that will do it. Hopefully your doctor has set up for you to be admitted straight into the hospital when you have an attack so that you avoid the ER. It is tough for you because so few doctors and nurses understand your disease and the severity of your attacks. Another thing that could help is to have your medical records tagged at the hospital you go to so the ER has that info as soon as you check in. That way if they treat you the way they usually do they will know much sooner to take your case more seriously.

[Nana4&cntn]

Kristin and Kira, My PM gave me a card they made in the office (about the size of a credit card) with my diagnosis, ALL the meds I take and other problems/allergies I have. The biggest part is he has listed ALL his numbers in the event I am hospitalized or need to go to the ER. It also has his signature and liscense # on it.

I have had to call him myself in an emergency only to find he is out of town and the service called him and I got a call back in 15 min.

You may consider asking your Doc's for something like this. I have been lucky enough not to have to use this in the ER.

Take care:)

[Nana4&cntn]

Kira and Kristin, I am hoping this finds you well or at least better! I continue to keep you in my thoughts and prayers.:)

[Diandra]

Dear Kristin,
To have to deal with hydrocephalus/head pain since birth is so unfair. You are obviously a very dear person to be so concerned for your parents. It is awful to feel like a burden to them but, they are your parents and they love you and I am sure you are not a burden. They probably feel guilty that you have to work at all yet know you need it for your sanity and self worth (and of course the cash flow). I am sure they would feel awful if you worked full time and it made your symptoms worse and that would be a bigger burden on them. Have you talked to your parents about your feelings of guilt? If not, it may make you all feel better to get your feelings out on the table.

I got sick at 38 and had to stop working at 40, am now 55. It has not been easy but, you learn to focus on the good in your life and try your best to put the bad on the back shelf. Appreciate the love of your family and precious moments spent with them enjoying birthday parties and holidays and other joyous times like graduations, marriages, adoptions, new homes, a job promotion, playing with beloved children and pets, etc.

I have a little piece of advice that has helped me a great deal...volunteer in any way at all helping others less fortunate than yourself. Even if it is an hour a week, if you are helping someone, it helps you feel connected to a greater, more universal purpose of good will and that is very fulfilling. If time, $ and transport are a problem, you can do telephone support to an ill, elderly or homebound person. To someone who has no family or is lonely, you could help them immensely.

Also, maybe you could do something special for your Mom and Dad to show them you appreciate them. For no reason, get your Mom some flowers or if you able, make your Dad his favorite dessert....little acts of love like that go a long way.

Take care of yourself,
Diandra

[Kira]

Kristin,

How are you going? I hope you're feeling a little better today.

This stuff can be so hard to deal with... especially with the feelings of hopelessness and unfairness and guilt that come with needing to rely on family to help because of becoming too sick to work and be independent. And, even though the rational part of our brains can figure out that there isn't anything to feel guilty about (it's not like we chose to get sick)... it is hard to convince the emotional part of our brains to stop feeling so badly about it all.

Keep talking/posting about it as much as you need to... The people on this forum know what it is like to live with this stuff everyday, and we're all here for you when you need the support...

[Kira]

Everyone else... thanks for the support! I'm so grateful to have found this place. I do feel bad about butting in to Kristin's thread, though... I just wanted to say that I think I understand what she's feeling...

You guys said to talk to our families about it, and I agree that it does help to talk about it with them. Over the past few years, my parents and I have gotten a lot better about talking about how we feel rather than keeping it all inside to smolder, and it does feel a lot better to have it out there in the open. I know that neither of my parents thinks that I have anything to feel guilty about... which does help some... although it is still not easy to lose so much independence.

About the ER and hospital...

I do have a possible way for my PCP to admit me without using the ER, but would have to use a different hospital. I'm going to try it next time I have to go. My specialists can still do consults there, and they have access to the other hospital's computer system & my records. And we did figure out a way to do some IV's outpatient, as long as I'm not sick enough to need hospitalization.

Like Kathy, I have a summary page to give them with my diagnoses, meds, doctors, etc. I've also tried to get my docs to write an emergency protocol, but they keep putting it off. The next best thing is to give them paper copies of the more important stuff in my chart. They are more likely to actually look at it if they don't have to wade through all of my records on the computer. I include labs, dx, hospitalizations, and specialists' recommendations. There is a balance, though... enough to cover important stuff, but not so much that they don't read it. I keep a few copies in a big envelope.

I think that the most helpful thing is that I have my metabolic doc's office, pager, and cell numbers. I call to let him know that I'm going to the hospital, and also call if I have trouble with the ER/inpatient docs. Then he calls to tell them what they need to do. It is really helpful once I know the ER and/or inpatient docs' names, because he can directly talk to them. It works better than me trying to tell them what they're supposed to do (especially ones with big egos). I try to get the ER/inpatient docs to call him, but get him to call them if they won't do it on their own.

If I ever do find a way to get back on track with my career... at least this disease has taught me to listen much more closely to patients when they try to explain what is going on with their own bodies. A lot of doctors get so scared of admitting when they don't know something, but it is so important for them to swallow their pride and either look it up or ask someone. I have been thinking about all of this a lot lately, and I really want to find a way to somehow share that lesson... that could be one of the few good things that can come of all of this loss.

[Mark N]

Kira, you are right about the lesson you learned and I hope you find a way to get it through to more doctors. I always worked with my classes to not be afraid to be wrong. So many people fear being wrong and as I told my classes the way we learn is to be wrong and learn from the experience. It takes being secure in your position to listen to others, especially if they are a different level than you, to develop treatments that work.

I found out as a coach that I got more out of players the more I had them help find a solution to a problem on the field. I knew I still ran the show so it wasn't a threat to ask my coaches or players what their ideas were. I wish more people would do the same as no one person has all the answers.

I hope there is enough of an improvement in the treatment of your disease to get you back on your career track and let you apply the lessons you have learned as a patient.

[Nana4&cntn]

Kristin, I have been thinking of you and wondering how you have been doing? Sweetie you are right that 30 y/o shouldn't need to depend on their parents in a perfect world! What you are going thru is not a "perfect world".

I will be 50 next momth and my parents in their 70's are helping me to keep my home and to pay for meds. I feel so bad about this, but they are insistent, and to be honest I have no other alternative as I cannot work. None of my doctors will release me to. I do hope I will be able to convince my doc's in the near future to allow me to go back to work! Here's to hope!:D

The best thing you can do is to do the best you can be!

I hope this helped a bit, I also understand the frustration. Take care of yourself