Saturday, September 20, 2014

30 Things About My Invisible Illness You May Not Know

"Because my illness does not define me."

30 Things About My Invisible Illness You May Not Know

I stumbled across a site on accident the other day, and read about the 30 Things Meme for invisible illness week which was Sept. 8th-14th this year, so I am a little late, but I decided I wanted to participate anyway because I feel strongly about supporting causes others with chronic illness have started.

1. The illness I live with is: Ehlers-Danlos syndrome-hypermobility type and Postural tachycardia syndrome (POTS)

2. I was diagnosed with it in the year: I was diagnosed with migraines as a young child. I also now have severe allergies that have caused a reactive airway disorder.I found out I was diagnosed with POTS in 2002 and never informed of such. I was diagnosed with EDS and POTS in 2013 through an elimination process of what I do not have. Who knows if my doctors will change their minds a bit,  but so far this is the closet  they have come for explaining the dysfunction my body often creates.

3. But I had symptoms since: Most of my issues started in 2002.

4. The biggest adjustment I’ve had to make is: Learning how to let go and accept myself fully, sickness and all. I was always very type A and I would push myself and overwork myself until I would get sick. I am trying to learn to scale back, and accept that I do not have control over what my body is going to do from day to day.  With accepting myself, learning how to let go of the judgment of others and not living up to their expectations. I have realized that there are a lot of people who are never going to truly get what I deal with day to day, and that I really am doing my best.

5. Most people assume: That I am better because my issues seem to flare really bad and then back off enough that I am much more functional, so people don't understand  that this is one long chronic illness because "I look so healthy."  Some even think that nothing is really wrong with me,  that it is all excuses, and if there is something wrong, it is in my head. The best thing my neuro ever said to me was "well what is wrong with you is in your head (referring to my dysautonomia issues and migraines), but it isn't in your head the way they think.

6. The hardest part about mornings are: On bad days, it is the brain fog, and shaky feeling I get when my blood pressure, heart rate, and body are not cooperating. It is really bad if I don't sleep enough. What makes it so hard is I still have to get up because three awesome little people depend on me.

7. My favorite medical TV show is: I only watch three shows because I really do not watch TV. So the closet thing to a medical show is Call the Midwife.

8. A gadget I couldn’t live without is: my phone

9. The hardest part about nights are: Depends on the night. Night is sometimes when I feel my best. I think it has to do with lying down so my body is no longer fighting gravity and I start to get energy, but I know I need to go to sleep because I have to be up early. Other nights the hard part is when my nervous system is so out of whack and my heart is racing,  who can sleep through that? If I am having joint pain in my hips, headaches, wrist pain or something the insomnia from being in too much pain to sleep or stay asleep is horrible.

10. Each day I take __ pills & vitamins. (No comments, please) I take prenatal vitamins, sometimes magnesium, and sometimes fish oil, sublingual immunotherapy (SLIT) for my allergies, allegra sometimes, and very very rarely my Xopenex inhaler. I really do not take drugs which also leads people to believe nothing is wrong. This is a personal choice, but until I think there is a drug that the benefits will seriously outweigh the side effects, I have no interest. I am also breastfeeding and that is non-negotiable for me and the drugs that would help are pretty intense.

11. Regarding alternative treatments : This word annoys me, why are pills now the primary mainstream treatment. This is one thing severely wrong with our medical community, but I will save that for another day. I am what I term a lifer in physical therapy. I started going three years ago and what a huge relief from pain I have experienced. I would say I went frm being in pain 85% of the time if not more to about 20-30%. I also condition train. I am in the gym a lot exercising. The more conditioned I am, the less symptomatic my POTS is on a regular basis. I still have really bad days but if I let myself become de-conditioned, every day is a really bad day. I also drink gatorade to keep my sodium elevated I really want an alternative to gatorade because I think it is horrible for you. Have any ideas please share in the comments. I am reading the autoimmune protocol and the Wahls protocol. Those diet changes will be the next step. I am always reading about alternative treatment options but I had backed off on everything while I was having a lot of diagnostic testing done.

12. If I had to choose between an invisible illness or visible I would choose: I have thought about this a long time, and I think about the Taoist farmer story and the who knows what is good or bad. I think this is a grass is greener on the other side question and I just want to take the best care of my own grass. I have what I have. I wish no one had to deal with  illness visible or invisible, but it is what it is and every condition has negatives.

13. Regarding working and career: This is so complicated, and my health has seriously affected my goals. I became a yoga instructor at 17. I completed my bachelors degree in psych and after I had my first son decided I wanted to be a midwife, so I went back to school and completed my bachelors in nursing. I also became a doula and a belly caster. My biggest issue is all of my dreams require a lot of physical labor. For now, while I heal from this last pregnancy, I am bellycasting and taking care of my three amazing children. I am seriously contemplating becoming a counselor as I love serving others as they grow on this life journey.  I also am working a great deal on blogging, as I love to share knowledge, stories, and experiences.

14. People would be surprised to know:That although I love socializing and being around people, I have developed some social anxiety from being sick. I was confined to my home for most of last year, and when I had to go places I had to be taken there. I also do not like getting sick in front of people and I don't always have control over when my POTS is going to start acting up bad.

15. The hardest thing to accept about my new reality has been: Is not always having my independence and having to depend on others.

16. Something I never thought I could do with my illness that I did was: Survive the natural birth of my daughter.I had both of my sons naturally, one even at home, but those pregnancies seemed to improve my condition, but this last pregnancy I was worse than I have ever been and I am still amazed by her birth. It definitely was one of the most intense experiences of my life.

17. The commercials about my illness: Are there even commercials?

18. Something I really miss doing since I was diagnosed is: Taking my independence for granted.

19. It was really hard to have to give up: Yoga and Running. As a yoga instructor and a competitive runner this was difficult. I still run a bit to help with the POTS but nothing like before.

20. A new hobby I have taken up since my diagnosis is:  Weight lifting. I started before I was officially diagnosed to try and help with my hip instability. Weight training has its pros and cons for my health conditions, but conditioning is not negotiable with my POTS and honestly I love to exercise hard and I found something that makes me feel as strong and invigorated as a 7 mile run: deadlifting, squatting, benching, etc. I love still being able to feel strong.

21. If I could have one day of feeling normal again I would: I would fill my day with activities with my kids. Maybe run around on the beach with them, fly kites, take a trip to an amusement park. Then I would spend the evening out on a date with my husband. There is no way I can fill my day with activities from morning to night anymore and some days these things aren't possible at all. I want to be able to do them all without the worry of using up all of my spoons or borrowing ones from the next few days

22. My illness has taught me: Empathy. Patience. Acceptance. I have also learned to question my judgments of others more, even about the simplest things.

23. Want to know a secret? One thing people say that gets under my skin is: "how can you be so sick, you look so healthy and you are in amazing shape!" The undermining comments sometimes disguised as a joke, aren't funny: "maybe it is just female hysteria", "maybe you just need a vacation", and on and on. The hardest one I am dealing with right now is the comment "Well now that you've got your girl, you can be done."  I know no one means anything mean by this comment, but I have not  emotionally come to terms with this being our last baby. We were never planning on only having two children, and had a third because we were trying for a girl. I wanted a big family. Working on that wants and needs thing.

24. But I love it when people: Are people. Even with the comments above that stir emotions I don't exactly love, I love people. I love hearing everyone's stories and who they are. I love knowing what people are passionate about; what moves them. I love intellectual conversations.

25. My favorite motto, scripture, quote that gets me through tough times is: "I am Spirit." Whenever my body is not cooperating, or I am sitting through another horrible diagnostic test, or the pain is unbearable, I repeat the mantra I am spirit. It gives me strength. It reminds me that my body and the sensations it creates aren't all that make me who I am, and sometimes I have to take myself out of body to get through rough times.

26. When someone is diagnosed I’d like to tell them: Do not allow others to create doubt because they do not understand and can not see your illness; you are worth more than that. I spent too many years doubting and belittling myself, and often hiding from others what I was experiencing because I was told nothing was wrong even though I knew there was no way most people spent their days feeling the way I did. Also, find a way to grab onto Hope and use it to live this life passionately using your limitations as strengths.

27. Something that has surprised me about living with an illness is: How many times you truly can redefine yourself and grow.

28. The nicest thing someone did for me when I wasn’t feeling well was: The nicest? There definitely is not just one. Just thinking about this makes me feel so loved and extremely blessed. I have some amazing friends and family. I know who is going to be there for me, and I have seen it with my own eyes. I do not fault others who are not able to do this, we are all on a different journey. But, let me tell you, I have some truly awesome friends and family. I know people who; will sit with me when I am sick, visit me in the hospital every day I am there, drive me to doctors appts., watch my kids last minute because I have to go the hospital or the doctor, bring me meals, drop off hand me overs of baby clothes, pick up the phone any time, throw me a baby shower even though I was the worst guest of honor sitting there sick, drive from other states to be with me when I am sick,  stick up for me to nasty nurses, fly from other states to be with me when I am sick, sit with me while I am scared and crying, help me with caring for myself when I can't, and they never remind me of it later because they know how embarrassed I get. See, I have amazing people in my life. I am so incredibly, wonderfully, and truly blessed.

29. I’m involved with Invisible Illness Week because: I accidentally stumbled across the founders page as I was googling for one of my next project ideas, and I felt compelled to participate to contribute to her cause.

30. The fact that you read this list makes me feel: Hopeful

Pin It

Thursday, September 4, 2014

Are You Feeling Better?

This was turning into a very long facebook post, and I decided maybe it was time to start writing again... "

 "So great to see that you are better."
"So glad you are healthy again."

I am beginning to hear comments like this daily, and I appreciate that people notice, that yes, after how incredibly sick I was last year, I am doing much better. Several years ago, I would not have said much more than, thank you and still today I say the same. Often because it is easier and they have already made the statement. If instead someone were to ask the question, "Are you feeling better?" the most simple response to this question is, No.

The truth is although I am not as sick as I was, I may never be "better." Ashamed, embarrassed, not wanting to be labeled as a hypochondriac, and being doubted,  left me covering up what I was feeling. I felt isolated and alone. Today I can't say I will be better, but what I can say, is that I am going to be my best, and that is all the hope that I need.

I am sharing this with you all because I think part of being and doing my best, is sharing, in the hopes I can make a difference, and in the hopes I can create more awareness.

  There are too many people who suffer in our medical system without a voice. They go from doctor to doctor, test to test, without answers. Our system excels for the most part, with treating acute illness, but when it comes to chronic illness, we are leaving people helpless and hopeless.

I have had medical issues my whole life, but as a child most of it was minor inconveniences, like my migraines which began when I was 3.  When I was 19, this changed a great deal, and I started having all sorts of bizarre, "you must be crazy" kind of  symptoms. I was scared. I was positive something was wrong, and doctor after doctor, test after test, I was repetitively told "you are as healthy as can be" but I certainly did not feel healthy. I was treated like a guinea pig. They would prescribe me cardiac medications while telling me nothing was wrong. I quit going to doctors. I gave up on them, when I realized they had given up on me. Don't ever give up on yourself.

After a year and a half, my symptoms became more manageable on a daily basis, and would more or less come and go. Several years ago, I started having many more neurological symptoms, so I went back to doctors and was still left without answers.

 What upsets me the most, was that I was diagnosed with a condition called POTS({postural orthostatic tachycardia syndrome) and was never told about the diagnosis.Yes, you read that right, the doctors never bothered to mention that maybe this was what was making me feel like I was going to pass out all of the time.  Last year, pregnant, I became so symptomatic, there was no more avoiding or hiding what was going on. I was too sick and I needed help. It was also finally obvious something was seriously wrong. The doctors still had no answers. I started researching more on my own, and that was when I learned about dysautonomias and more specifically POTS. I went searching through all of my old medical records and found that in fact, when I was 19, I was diagnosed with POTS. Words can not express the plethora of emotions this stirred in me.
  The awareness of rare genetic diseases, and autoimmune diseases, even in the medical community, is frightening. I didn't even know there were conditions such as dysautonomias, and I had an A average in nursing school!  My cardiologist for the past 11 years only provided me with the explanation of, "yeah, this is just one of those things people are diagnosed with when we don't know what is wrong with them." 11 years later, extremely sick and pregnant, this was an unacceptable response and it took a lot of self control not to lose it on him. That is just a small glimpse of how ignorant some doctors are about this. Luckily I found doctors who took very great care of me while I was pregnant, and I am so grateful for them. I believe because they listened to me and treated me accordingly, my daughter and I were able to have such a positive outcome.

 I spend a great deal of time reading research articles because I have to advocate for myself, and unfortunately for Bean as well. Although Bean so far does not have POTS, he does seem to have another disorder I have also been diagnosed with. This disorder is Ehlers-Danlos Syndrome (EDS), the joint hypermobility variant. My EDS diagnosis and POTS diagnosis explain a great deal of all of my "you must be crazy" kind of symptoms, and they typically coincide with one another. The more I read, the more I  understand myself and everything I have felt and feel. Bean and I have very different symptoms of  EDS, as it is a genetic condition and affects everyone a little different, but it is nice to know what is going on.

I can sit here and say I wish I knew then what I know now, but there is no point in living in that space. I know through my own experiences as a patient, and also through my education, that the best way to advocate, is to be informed.  I have been sick so often since graduating from nursing school, I often wonder the purpose of all of that stress, if I can not help others. However, I am thankful for my education because it provided me with tools to help myself. In nursing school, I learned the importance of caring, informed consent, and treating the whole person. This drives me to want to spread awareness. No one should have to  go through this journey we call life, feeling alone.

I never knew what to expect when I finally had a label for what was wrong with me. I desperately wanted answers for so long, but I never really thought what it was going to provide me with.

What it did do, was it made my health issues very concrete. I realized  this was not just going to disappear, the way it appeared in my life, completely uninvited. My husband one day looked at me and said, "Did you think after 10 years this was just going to go away."

"I looked at him and said "yes." That yes was so genuine, and I guess it was naïve.

That was the day it all started to really sink in. I have a weakness. I have a vulnerability. I have a label. This is not completely temporary. I am going to have to stop making myself sicker by stubbornly pushing myself to "suck it up", as my body suffers. So in some ways, I am thankful I did not know what was wrong, as there are experiences I gained from this.

Another thing having a diagnosis did, was it brought me to the realization that I am not alone.
"Oh my goodness, there are so many people with these conditions." Now I know many of them. At first
 this made me sad, especially discovering that many of them are struggling daily. The part that really made me sad was the thought that there were  people out there undiagnosed, being told nothing was wrong, and desperately wanting an answer.

What this diagnosis did not do, was take away my hope. It is this hope that was what finally made me decide to be more public about this.

When I was 19, I felt hopeless. I went to doctors. I depended on them. I put my faith in them. I took the medications they gave me, and became sicker. I had no medical knowledge, and when they couldn't provide me with anything, I began to lose hope. So many people around me decided nothing was wrong because the doctors found nothing and so often people use to tell me it was going to be ok. No one wants to be told they aren't feeling what they are feeling. No one wants to be told it is going to be ok, when in fact it is not ok. My hopelessness was the worst. No one should be left feeling hopeless.
Now, hope is what gets me through my most difficult days. Hope is what I find when I feel weak, exhausted, and ready to give up. There is always a reason to be hopeful, even if it is simply just the idea of hope itself. I am not here to be a positive example for anyone else, or live up to anyone's standards of how I should "do" being sick. I am not less because I am sick. I am not less because I have days where I come very close to feeling hopeless and I have little to give. I have bad days and good days just like everyone else. I am here because if my ramblings can help anyone, or at the very least give them hope, I feel the need to share my journey.

Pin It