Chronic Illness:finding a new “normal”

I just read a post on another blog that inspired this blog post. The topic was about how, once you are diagnosed with a chronic illness – this one was endometriosis, you are forced to find a new “normal.” There is no returning to the life you were accustomed to pre-diagnosis, pre-pain and discomfort. There is no denying you are a changed person.

Chronic illness scars you – leaves battle wounds on your heart, and on your psyche. It permanently changes the way your look at life and those around you. And if you are not careful to realize how blessed you are that your illness is “chronic” and not “terminal”, your pain will become a bridge that divides you from those who love and care about you. You will regret not being able to do the activities you once could. You will regret having to adjust to a new lifestyle. Depression will eat you. Anger will manifest in your core. And no one will want to be around you. There you will be, isolated, with your illness alone to keep you company.

In order to persevere, we who suffer with chronic illnesses must learn to create a new “normal.” This new normal must not shut out those who loves us. This new normal must not discriminate against the “healthy ones” who can’t understand our pain. This new normal must try to fight with every cell in our bodies against the stigma that comes with “chronic illness”. This new normal must take a firm stand and say “we are chronically ill, not chronically lazy, not chronic hypochondriacs, or chronic attention seekers! And we will not accept ignorance and discrimination anymore!”

At least that’s my “normal.” My normal doesn’t take any crap from any doctor, nurse, clinician, or bystander. And as long as I stick with that normal, I feel good. I feel balanced. There is no depression or anger. There is no regret over things I can’t do. I may push myself too far sometimes, but I suffer for it when I do. I realized I couldn’t be happy unless I pushed myself once in a while. But everyone is different. And that is fine. Everyone needs to find their “normal” and then be content with it.

In other news: My review of “A call for more transparency of registered clinical trials on endometriosis” – Debate Paper published in the journal Human Reproduction, is in the works and should be up by the end up weekend – if not sooner. Keep and eye out for it!

Article – “Overpriced Poison?” UPDATED

This article popped up in my Google Alerts this morning and I couldn’t resist reading it. It discusses a couple women’s reactions to Lupron. A must read for anyone contemplating taking that drug, for sure!(PT1) Overpriced Poison? and (PT2) Overpriced Poison?

#endo

My 6 week follow-up with the new #endo doc is tomorrow. I have given this Zoloft it’s fair shake. I really have. In the past, and if this had been my old doctor who I had built a long relationship with, I would have given up on the med a long time ago. But, because this is a new, budding relationship I’m trying to foster, I gave it a go. I stuck with it despite the hell it’s brought me. Headaches. Nausea. And no relief.

Yes. I would be willing to trade-off a mild headache and some queasiness if I was pain-free. But, no, this isn’t the case! So then, what has this medicine done for me?!? Well, let’s see. It’s made me moody at times. Given me a few brief nights of insomnia. Lovely. And when I could sleep, I was plagued with vivid dreams that would cause me to toss and turn throughout the night and lose sleep! I’ve had a rather restless, sleepless 6 weeks. I don’t wish to repeat it or prolong it with this medication still in my system.

Now, I know going into this appointment that she’s going to suggest either Lupron or a hysterectomy. I’m not comfortable with either of those options. For me, a hysterectomy is too permanent and not a solution. Endometriosis can return after a hysterectomy. And the operation only causes more adhesions, which will cause their own problems down the road if not now, in the short-term. Then there is Lupron, as if it hysterectomy wasn’t scary enough. For me, it’s not necessarily the side effects of Lupron but the long actingness of the drug. I had a nasty reaction to its sister medication – Depot Provera – and was told all I could do was ride it out for 3 months until the drug cleared my system. I find this frightening. I am unwilling to risk having something injected that will last a month or longer and may do more harm than good.

I have been doing some research though on the cancer drug Femera for endometriosis. It acts in the same way as Lupron but with must lesser side effects. It’s also available in pill form. I like this, because that way if I’m uncomfortable with how it’s making me feel, I can just stop taking it. I’ve been reading forums where women have taken both that and Lupron and claim the side effects were MUCH more tolerable on Femera than Lupron. They also claim the pain goes away quicker with Femara, and stays away longer. There are research studies being conducted as to Femera’s effectiveness possibly being better than Lupron. I wonder if my doctor has heard of this, and if so, why she didn’t mention it to me. I looked under my insurance coverage and the copay is reasonable. From what I’ve read so far, and I plan on reading more before I go to my appointment tomorrow, I plan on requesting a prescription for this when she tries to thrust Lupron down my throat. I will refuse Lupron even if I walk out of there with nothing. That stuff will never enter my body.

We’ll see what tomorrow will bring. But I will suffer through some vague hot flashes and mild muscle aches for some #endo relief right now.

Happy #Halloween

It’s Halloween! This ranks as one of my favorite holidays of all time. Probably my second. As a  child, I loved dressing up as scary characters. And nothing beats a haunted house or a good horror flick (not too much for the gruesome type, I prefer the suspense) to set the perfect tone for the holiday.

Halloween is the holiday for the creative person. You are allowed this one time of year to truly let your imagination sore. You can be whatever you set your mind to being. If you want to be a brain-eating zombie with detached ear dangling from your face – go ahead! A princess, why not! It’s your imagination. But Halloween for me was always about the scariest most gruesome costume I could whip up. And I had some in my time. Oh, those days were fun.

But my daughter… what does she want to be? A bride. Yes. A beautiful bride with a veil and a white dress and a bouquet and make-up. I’m scratching my head. Is this my child or my sister’s? I did give birth to her, right?? Some days she acts like me, but more often than not she reminds me too much of my middle sister. Tea parties with her bears, play jewelry, getting into my jewelery box and make-up, playing with dolls. It’s uncanny how much she reminds me of her at that age. And the problem is, we never really got along much when we were that age because we had nothing in common outside of the fact that we were sisters and forced to share a room together. Yet, here I am, raising my sister.

Sometimes the memories of a holiday – of how we spent our childhoods gathering candy and eating it before it hit the bag, or how our stomachs ached when we reached our front door but we most likely still ate that one piece we were allowed before bed; those memories bring smiles to our faces. And then, for me, there are memories in which I can reflect and see my daughter in my sister. Yes, I may be scratching my head, but I’m smiling as well.

Reasons why I’m happy today…

And here is the Top Ten list of Reasons why I’m happy today:

10) It’s Thursday which means one day closer to the weekend!

9) My house no longer looks like it’s falling apart! (I’m a neat freak and when I came home from the hospital things were getting hairy.)

It stopped raining… for now.

7) It’s not too cold out

6) My lovely smelling bath salts came in from a party I went to a few weeks back, and I just love soaking in them. Don’t tell my PT, I’m not supposed to take baths.

5) The fact that I’m down almost 7 lbs this week and I’ve done nothing for it. This elates me and scares the crap out of me at the same time. I’m choosing to live in denial that this is a bad thing until I either have a nice gain tomorrow/lose more tomorrow/or talk with my doctor tomorrow at my follow-up appointment. Until then, I’m remaining positive. I know my bubble will burst in some way, but I can be happy for now, right???

4) I’m going on a field trip with my son and his class today – and to the library! How cool is that?!? And I have now just stepped over the nerd threshold and will pay my nerd dues for the year. Where are my pocket protector and high wasted pants? LOL I get giddy when I think of kids being exposed to reading. My son was tested in kindergarten and had a 3rd grade reading level, so can you guess how excited I was. I about had a parade and this kid was like “so what”. He reads chapter books every night and wins accelerated readers awards and honor roll and it rolls off his shoulder as if it’s just another day. And because of that, he’ll get his chemistry set for his birthday. Yes, my little brainiac wants to be a chemistry professor when he grows up. How adorable is that? awe….

3) My daughter did not wake up a) crying b) throwing a fit c) resembling a zombie on a quest for brains or, d) whining incessantly. This means we will have a good day. *sigh* She has been a pill lately, or as my husband says “she’s just being a girl.” I then slap him very hard!

2) My sodium levels are good! Yay! My potassium levels are elevated. I’m not sure why, but they want me to lay off the potassium rich fruit for 2 weeks and re-test. I guess that’s what I get for eating the way I do? LOL But I’m glad I can keep my Desmopressin at its current dosage. It really helps me during the day. My thirst is being controlled more now.

1) And my top reason why I’m happy today….

My neck is finally beginning to feel normal. When I see my physical therapist next week I will have to give him a high five. His suggestion, while not necessarily the most comfortable thing in the beginning, has helped dramatically! I am so much better today than I was yesterday. I still have some way to go, but I now can see an end in sight that I couldn’t see the other day. And this is such a relief. To be able to do some of the things I couldn’t even do yesterday without as much pain and discomfort is amazing. I love it. I woke up this morning and my neck was more flexible. I was wowed. I’m going to go now and do my exercise before this field trip so I can survive it. Then I have to put on some make-up, which I never wear, because all the other mommies will be wearing it and I need to blend in. I hate make-up, it feels like you’re hiding behind a mask. And it just causes pimples and blackheads and all that stuff. I don’t see the point unless it’s a romantic night out, a wedding, or a job interview. Oh well. Off I go. Have a great day!

Do not go gentle into that good night – Dylan Thomas

I posted quotes from this poem over on a comment over at Chronic Healing and was inspired to share with everyone my favorite poem in it’s entirety. This has to be my favorite of all time poem, and the opening and ending stanzas must be my fave lines. If I were to ever get tatoos (and believe me that’s a HUGE if), I would get “Don’t go gentle into that good night… Rage, rage against the dying of the light,” and Carpe Diem. Carpe diem has nothing to do with this poem, and then again, it has everything to do with this poem. Enjoy.

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Getting there – slowly

I’m getting there slowly, thanks very much to my physical therapist. My neurologist has been of no help in this situation and has offered nothing but an IV of Depakote. But even he admits it’s not likely to help in the long term, and the headaches will likely return until the neck injury has calmed down. So, for now, I will trust my lovely physical therapist and do as he says. He was kind enough to call me yesterday and make some suggestions – which helped. I’m up and about more so than I was yesterday, but I’m being extremely careful NOT to push myself. I’m too much of a busy body to be lying around in bed. I have an awesome article I can’t wait to print out and start reviewing for this blog, as well! Not sure when I will get to it though as I have a nasty busy week ahead of me. I hate being so busy, but such is life. Thanks for hanging in there readers while I’ve been down-and-out. Remember, what doesn’t kill you only makes you stronger. Although, it sure tries sometimes, doesn’t it?

12:40 a.m.

Why am I even aware that this time exists? I was asleep. I was sleeping off the effects of my Midrin, but for some reason at 11:55 I woke up, unable to sleep. My migraine is still here. Perhaps the edge has worn off, but the stroke-like symptoms are still present. And those make my life a living hell. I’m not even sure what brought it on unless my levels are dropping again?

I have a therapy appointment this morning and I will make it! If I have to drag myself in there, I will make it. But I need to get back to bed. 2 hours of sleep isn’t going to do my body any good. Nor will it help a migraine. I gave in and tried some caffeine – how this will help the sleeping situation I don’t know. We’ll see if this has any positive effect on the blood vessels. I just have this ice pick headache over my right eye, been there all day, and that’s how it started. I know that’s part of my concussion, so I can’t explain then why it’s spread into a full-blown basilar artery migraine! I give up explaining these things anymore. It’s pointless really. I guess you just ride the wave and see where it spits you out.

Everyone – Thank you!

I just want to take a moment to thank everyone who has given me their well-wishes both on-line and off-line that I know from the blogosphere and Twitter. Your words of encouragement are greatly needed.

I am home, have been since Wed afternoon. What a way to spend my anniversary, but at least I did get to enjoy some of it sans hospital. I am still in recovery, as those who have spoken to me know. My head still hurts on the right side as does my neck. My sister says the neck probably hurts because my husband and other sister had to kick on the door of which my head rested against, then pry my head in some weird position to get the door open enough to get into the bathroom to get to me. Since I wasn’t really “there”, I’ll take her word for it. All I know is that I have intense pain radiating from my neck down my arm, and a nasty headache. I need to see my physical therapist – and this isn’t just my opinion, my nurse coordinator believes so too – but the earliest appointment I could snag was Nov. 5! Ugh. I put myself on the wait list, and while I usually don’t wish for others to get sick, I’m crossing my fingers that there will be cancellations next week as most of the people in this area are sick with some kind of virus/flu. My family got hit hard this past week, so hoping my chances are good. I will also be calling Monday anyway and telling the receptionist how urgent it is I see him, and speaking to him personally if need be.

But because of my continuing discomfort, I’m not hanging on this computer much. I’m having a heck of a time just getting dressed or putting things away above my head!

Hospital Update

It’s not looking like a seizure. At least the neurologist is not wanting to call it that because he said you need 2 episodes to label it epilepsy. I don’t need yet another label, thank you very much, so just keep moving. We are having one hell of a time with my blood pressure. It’s running very low. He said it’s the neurocardiogenic syncope causing that. It was that combined with an apparent basilar artery migraine attack that caused me to black out, apparently. Or, that’s what they are going with. All I know is I’m left with a nasty bruise on the side of my face near my eye, my glasses are messed up, my head is killing me!, my blood pressure is now low and doesn’t want to get with the program, I have bruises on my arm and chest where I fell and hit into something in my bathroom, and other fun stuff showed up on the xrays.

Apparently there is a dark spot on the lower tip of my right lung that showed up on xray. They suggest I follow-up and have images redone in 2-3 months. Lovely. My doc isn’t too concerned because I’m a 29 yr old non-smoker. The neurologist they brought in for my consult tells me I have too many neurological problems for someone so young (duh!), and he never sees idiopathic trigeminal neuralgia in someone under 50. Again – duh! I explain to him that my neuro and I have done MRI’s every 6 months looking for a bigger cause and have found none. I can’t explain it, but I have a physical therapist who can back me up that it is in fact there.

And, boy, when I get back to physical therapy will I be in a terrible state. My neck and head are killing me. They are all out of allignment from being in this hospital bed! I wouldn’t be surprised if I’ve lost all the progress I had made.  There goes a lot of money waisted on the past couple months of PT if so. You know.

Hopefully I can get my BP to rise by lunch time and I can get out of here. If not, it looks like another night in the hospital for me. It’s my anniversary today too. What a way to spend it.