30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

As promised, I am using this week to start a new series about my illness, Dysautonomia. In anticipation of Invisible Illness Awareness Week, I am going to start the week off by completing this 'meme' created by Lisa Copen, founder of Invisible Illness Awareness Week. She is encouraging anyone with an invisible illness to complete the meme and then post it on their blog, Facebook page, email, etc. Once you have done that, then go to the Invisible Illness website, HERE, and leave a comment that includes a link to your post. On September 5th, there will be two people selected to win a PRIZE out of those who have commented!

1. The illness I live with is: Dysautonomia with Reflex Syncope - This means there is a dysfunction of my autonomic nervous system that causes me to pass out very frequently, especially if I stand suddenly or for more than a few minutes, often just seconds.

2. I was diagnosed with it in the year: 2007

3. But I had symptoms since: Adolescence

4. The biggest adjustment I’ve had to make is: that I'm homebound and mostly bedridden. I am no longer able to enjoy most of life's basic activities.

5. Most people assume: that if I'm sitting up, talking, smiling or carrying on a conversation that I'm 'feeling better' physically. Doing any of those things are very hard anytime of the day or night for me now. I struggle just to talk sometimes.

6. The hardest part about mornings are: waking up and trying to move. I must take medications before I can even get out of bed. After that, I must rest for a while and let them take effect before I am able to get up. Then, I must have assistance getting dressed, getting down the stairs and into my recliner where I will stay ALL DAY!

7. My favorite medical TV show is: none really. I don't watch these much anymore. It reminds me too much of things I can't do any longer. I worked in the medical field for nearly 20 years and now, because of my illness, I can't.

8. A gadget I couldn’t live without is: probably my laptop because it is my sole connection to the outside world except through my family. I also must have my wheelchair in order to get around most days.

9. The hardest part about nights are: the excruciating pain I often endure and my constant struggle with insomnia. I am always exhausted even if I sleep a few hours.

10. Each day I take __ pills & vitamins. Let's just say it's a lot and leave it that!

11. Regarding alternative treatments I: am relying on my team of doctors to advise me best on what to do.

12. If I had to choose between an invisible illness or visible I would choose: to leave it to the Lord. This isn't a choice I would make. They are both equally tough, I suppose.

13. Regarding working and career: I am now completely disabled. Amazingly, I was approved for Social Security Disability Insurance (SSDI) on my very first application. I applied last December and was approved in February of this year. The sweet lady who took my application over the phone said she was going to try to get it 'expedited' and she did not lie! All-in-all, it took a total of about 6 weeks - a complete God thing! I do, however, miss being a Paramedic sometimes, but I am very thankful for what I do have.

14. People would be surprised to know: that being able to sit at home all day, every day, is not all it's cracked up to be. 'Bed-rest' is NOT fun after about the first week!

15. The hardest thing to accept about my new reality has been: not being able to participate in the lives of my family like I used to. I do not like sitting on the sidelines - or, actually, NOT sitting on the sidelines!

16. Something I never thought I could do with my illness that I did was: start this blog!

17. The commercials about my illness: do not exist. :0(

18. Something I really miss doing since I was diagnosed is: pretty much everything, especially the things my family does. It is not easy being stuck at home all the time.

19. It was really hard to have to give up: control. God has that. Well, at least I keep giving it to Him on a daily basis.

20. A new hobby I have taken up since my diagnosis is: message boards and blogging.

21. If I could have one day of feeling normal again I would: have just a normal day with my family. I would chose a Friday and go to the football game where I would watch the girls march and I would cheer from the top of the bleachers!

22. My illness has taught me: how truly blessed I am! It has taught me to not take anything in life for granted and that my husband really does love me unconditionally.

23. Want to know a secret? One thing people say that gets under my skin is: 'You look really good, so you must be better.' OR 'You are not in the bed, so you must be better.'

24. But I love it when people: ask questions about my illness out of a genuine desire to know more about it and to understand how I truly feel.

25. My favorite motto, scripture, quote that gets me through tough times is: Scripture from Jeremiah 29:11 ¹¹ For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

26. When someone is diagnosed I’d like to tell them: to learn as much about their illness as possible and be their own advocate! I would also tell them they are not alone. Find other people who have their same illness to encourage them. Find support through their local community support groups, internet support groups, message boards, etc. You do not have to go it alone. Above all, trust in the Lord to see you through! People will let you down but He will NEVER let you down!

27. Something that has surprised me about living with an illness is: how many people try so hard to determine how I 'caught' this disease and/or how I should 'treat' it or how the doctors should be treating me.

28. The nicest thing someone did for me when I wasn’t feeling well was: This just can't be limited to just one person or occasion! There have been so many people who have sent notes, called and come to visit. Others who have made us dinner, brought flowers, cleaned our house and helped in our yard. The stories about these things are endless and I am forever grateful!

29. I’m involved with Invisible Illness Week because: I desperately want people to know that just because an illness is not seen does not mean it does not exist or is not as intrusive as a visible one. There is so much people don't understand about these illnesses and that is why awareness is important.

30. The fact that you read this list makes me feel: honored that you cared enough to do so.

Find out more about National Invisible Illness Awareness Week and the 5-day FREE virtual conference with 20 speakers September 14th-18th, 2009 at www.invisibleillness.com.

I will be blogging more about my specific illness later this week as promised! Thanks so much for taking time to read this. I really appreciate it. See ya soon!

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MY MOST RECENT HOSPITAL STAY June 30th - July 6th, 2009

(I apologize upfront for the length of this post. Although I'd be very honored if everyone were able to take a few minutes to read it, I totally understand that you all are very busy! As I've said before, I mainly want to use this to keep my family and friends up-to-date on what all is going on in my life and to provide education for them as needed about all the various things that go on. However, the main point behind this post was more about reaching out to others who have, or may have, this disease and are looking for answers. My prayer is that the Lord will lead someone here who has been searching for answers about this disease. I pray they will not only find refuge and solace here among others like them, but that they will find it in the arms of our Lord and Savior, Jesus Christ. If I can help just one person learn something new about the illness, know a little more about how to better manage some of these horrible symptoms and, most of all, just help them to know they are never, ever alone...then I have accomplished my goal!)

So here we go! As I was telling you in my last post, after getting my new port placed on May 28th, I seemed to be doing relatively well – all things considered. Then on Tuesday, June 30th, I got up around 7:30 and my husband, D, helped me downstairs to my recliner where I spend most of the day, on my ‘fair - good days.’ D is an ex-Paramedic like me, so after being properly trained by home health, he is now the one who does most of my port management. On that particular day, we followed our usual morning routine, plus it was also time to re-access my port after not accessing it for a couple of days. The port has to be de-accessed and then re-accessed weekly in order to help avoid infection.

Once it was accessed, D got a bag of IV fluids going before he left for work. He was already running a bit late that morning and needed to be at a meeting soon so he didn’t linger long afterwards. Approximately 15 minutes after he was out the door, I started having the same horrible feeling that I’d had when my port had been infected – that one that comes on so very rapidly and without warning! I became extremely cold and then started having chills in the matter of a couple of minutes, if that long. I immediately called D and had him turn around and head back home and then I had my daughter, B, help me back into bed. By the time I got there, I was having those full force, extremely violent chills. I knew something serious was wrong again. D was home in a flash, he got in touch with my doc and we headed for the ER.

Now, I will admit that I am not much of a fan of our local hospital’s ER. (I will write more about all of that in an upcoming post.) However, this time I have to say it all went more smoothly than usual. They knew I was coming ahead of time and that I was potentially very ill. I was triaged as soon as I came through the door and they took me straight back to a room. Before I could even get up on the bed, there were several people in the room doing a hundred different things at once, or so it seemed.

Because they were concerned that my port was infected, they could not use it. That meant they had to start another IV in a peripheral site. Praise God, one of our former colleagues in EMS was working that day and she was able to get it on the very first attempt! Absolutely amazing! They were then able to give me some pretty good meds through my IV so that I was feeling a good bit better soon.

They did a TON of labs which quickly came back strongly indicating that I had a PULMONARY EMBOLISM, a blood clot in the lung. I also had a whole host of other abnormal labs. Most importantly, my liver enzymes were above 600 – normal being less than 50 - and my Lactic Acid level was high. This was definitely indicative of another episode of ACUTE SEPSIS, which is what I had back in April when I was so sick then. They really needed to do a Cat Scan (CT) of my lungs, with IV contrast, to rule out a clot. However, the size of the IV catheter that was used was so very tiny, it could not be used for the contrast. (IV contrast has to go in through a very large bore catheter and at a very high rate of speed. This can’t be accomplished with the little ‘baby needle’ they had in me.) They spent at least a couple of hours sticking and sticking me, trying to get that larger IV site. It never happened. Finally, it was decided that a Heparin drip would be initiated in order to bide time so they could wait until the next morning and then do a nuclear medicine lung scan because the tech for that particular study is not there at night, which I believe is completely ludicrous! But no one asked me, obviously.

While I was still in the ER, they also did a CT of my head and Venous Doppler Studies of both my legs to make sure there were no clots there. By the time I made it to my room upstairs, I was totally exhausted and it was already around 1:30 a.m! It was finally determined later on in day 2, after all the initial labs and scans, including the Nuclear Medicine Lung Scan, that I either never had a clot or that the Heparin had worked to dissolve it overnight. At that point, they started focusing more on the source of the infection.

I was ultimately in the hospital for 7 days on IV antibiotics. Praise be to Almighty God, my port did not have to be removed this time! It was ultimately determined that it was not the origin of the infection nor did it appear to be negatively affected by it at all. In fact, while I was in the hospital, they never could quite determine the exact source of the infection. They just knew that after they started the antibiotics, I was responding well. I quit spiking high fevers and I began to improve a little, day by day. It took me a while to actually ‘feel’ better. I was still extremely nauseated and had a some trouble keeping solid foods down and I also had a great deal of upper abdominal/mid-back pain. Additionally, my liver enzymes were still elevated, though they were inching back down and were much better than when I came in.

On about day 4 or 5, they decided to do an ultrasound of my abdomen. (You have to remember, this was over the July 4th weekend, so no one was getting in a big hurry to do anything!) On day 6, at around 10:30 PM, the GI specialist came in for the very first time and woke me up. I was in a daze but I gathered from what he said that my liver enzymes were continuing to come back down to normal and were now around 100 but that my spleen was now enlarged. He had no idea why, so he had scheduled for a Hematologist to come in to do a consult with me for the next day – the day I was expecting to go home. Humph!

Very early the next morning, the hospitalist – the main physician who had been coordinating all my care while I was there – came in to see me. She said that all my labs were looking really good and that she was not too concerned about my enlarged spleen. She said she did not see any reason to keep me as an in-patient in order to follow-up on it. She agreed to discharge me with the understanding that I would follow-up with my primary care physician within a few days. I eagerly agreed and after a couple hours of waiting on all the necessary paperwork, I finally got to come home! It was so good to be back home after being in that place for 7 days! It was an awesome feeling to finally get a real bath and get in my own clothes but it really wore me out quickly.

Not long after I was home, I started experiencing even more pain in my upper abdomen and mid-upper back. I still could not eat much at all without being full and very nauseated almost as soon as I started to eat. After contacting my Primary Care Physician, I was scheduled for a follow-up abdominal U/S and labs. Once the results were in, it was finally determined that in addition to whatever bacterial infection I had that made me septic, I also have MONO! That turns out to be the cause of my enlarged spleen. My spleen being enlarged is probably causing, or at least contributing to, why I have been having so much more nausea and vomiting and why I do not feel like eating much. There just hasn’t been a lot of room for my stomach!

I am so very thankful to have finally gotten a definitive answer to what all is going on and I’m glad it was nothing to be overly concerned about. However, I do have to chill out the next couple of months –as if I have anything else planned anyway – and try to recuperate from all this. Mono can take anywhere from several weeks to many months to recover from. It can be especially difficult for anyone who is especially young, elderly or already immunocompromised.

It has been a couple weeks now since I’ve been home from the hospital and I’m still having a good bit of trouble eating, being extremely nauseated when I do eat and I am constantly fatigued…even more so than I already am chronically. I hope to see some improvements really soon. Please pray that I do!

Until next time.....