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Posted on 28. April 2016

Rules for Living with Multiple Diagnoses

By Joanna Tierno

They say that lightning rarely strikes the same place twice. But, that is a myth. The truth is there are reasons why a particular spot is struck by lightning more than once (such as height, salt or moisture content). The same is true for patients with primary immune deficiency diseases (PIs). Just because we have one unusual diagnosis, that doesn’t mean more diagnoses won’t follow. For reasons similar to lightning strikes, having a genetic disorder may make us vulnerable to other disorders or conditions.

Also, a condition like PI can affect many parts of the body, resulting in many symptoms and many specialists. This makes life much more complicated on several levels for us. The more things wrong, the more appointments and treatments we have. Each condition tends to come with a set of rules we need to follow to feel and function as well as possible. For rare conditions, we may have to figure out these rules for ourselves, which is extra challenging. Remember Gizmo from the movie “Gremlins”? All he had to do was follow three rules.

‪I have three rare conditions along with my PI, as well as a rare skin condition and a seemingly growing number of “normal” conditions such as migraines, GERD, spondylitis, tendonitis, etc. For each condition, I have found a number of rules that help me to manage it. If I don’t follow the rules, well, you saw the movie! ‬‬‬‬‬‬

‪I wish I had just three rules, or just three conditions, for that matter. And, I know many of you do, too. Socially, careerwise, romantically and economically, it is hard to juggle so much all the time - just to try to function. Here are my rules for dealing with multiple diagnoses:‬‬‬‬‬‬

  1. Learn all you can. If we’re lucky, there will be information and support groups for all our aliments. But, if not, we can keep a journal of our own experiences to track any patterns, ask our doctors questions and search the web for whatever we can find. Though I have yet to find a pamphlet or foundation for my rare skin condition, I have found other patients who have it. Especially if we have something doctors know little about, we may get some useful tips from others living with the same condition, and if nothing else, we will feel less isolated and alone. ‬
  2. Stay inspired. There are so many people who have led amazing lives in less-than-perfect bodies. Stephen Hawking, Helen Keller and Franklin D. Roosevelt are some well-known examples. Most of us won’t ever be famous, but that doesn’t mean we won’t find meaning in our lives or be able to offer important contributions to the lives of others. Many people say that health is the most important thing in life. It is something to be cherished, but life often can go on without good health, and sometimes our physical limitations give us a different perspective on the world - one that can sometimes help or inspire even healthy people.
  3. Establish routines. I have so many routines. There are the three-a-day medications, four- to five-times-a-day skin medications and treatments, weekly infusions and physical therapy sessions. After doing something for a while, we can almost do it without thinking about it too much. Sometimes when given a diagnosis, all the changes we have to make seem overwhelming. When I started suffering from GERD, I had a hard time getting used to life without coffee, citrus or acidic foods and fats. The first few functions I attended, I had trouble figuring out what I could eat. It eventually got easier, and I am now used to it. Any diagnosis will take time to get used to, and the more diagnoses, the more things we may have to change or give up. But, over time, if we stick with a routine, it can become our new normal.
  4. Slow down if you have to. In the aftermath of “Superstorm Sandy,” I developed three new conditions. I have had to cut back on some activities, most of which I really enjoyed. Impeccable self-care leads to the best health and the best outcome, so it’s important to always weigh the risks versus the benefits. It’s OK to push ourselves sometimes for something deeply meaningful or totally necessary, but for things less important or tasks other people can do, we need to let it go, and rest.
  5. Manage anger and jealousy. Everyone of us at some point will feel like “Why me?” Or, we will feel angry and frustrated for what we can no longer do. It’s best not to compare ourselves to others or even to our former selves. Nothing good comes of it, so it’s best to try to change the channel on those thoughts. ‬‬‬‬‬‬
  6. Be thankful. Gratitude focuses on the positive in our lives. We need to be glad about our abilities. We need to be glad for the roofs over our heads, all that is going well or the things that bring joy in our lives. Often if we start to count our blessings, we will find they outnumber our hardships.
  7. Learn something new. In rule 2, I mentioned Stephen Hawking. He is very physically limited; he can’t even speak without a computer, but he uses his mind. As I have had more health issues, I have been enjoying listening to audiobooks on a wide variety of topics. There are many ways to keep learning and growing, and our health doesn’t have to interfere. If we are conscious, we are able to use our minds.‬‬‬‬‬
  8. Know what you are capable of. ‬‬‪‬‬‪Sometimes, it’s not until we are challenged that we realize our capabilities. It’s important not to leave for others what we can do ourselves, and there is no reason for illness to stop us from leaving this world a slightly better place. We all have a purpose and can make a difference.
  9. Reward yourself. We need to make sure we do things that make us feel happy. We should always have one thing we are looking forward to. It can be small like a favorite meal or bigger like a vacation. Having things or events in our lives that bring joy give us a reason to keep fighting and pull through the rough times. ‬‬‬‬‬‬
  10. Know that there is always hope. Just because we are going through a hard time, doesn’t mean it’s always going to be this hard. Where there is life, there is always hope. In the second year of my rare skin diagnosis, I became dramatically worse. My skin was red and sometimes spontaneously bleeding on both my arms and legs. The itching was bad; I couldn’t even sleep at night. I had gone through most of the known treatments with most of them making me worse, not better, when together with my team of specialists, we figured out that in addition to my rare skin condition, I also was having allergic reactions. After starting allergy medication, my skin has returned to near normal. I still have a rare skin condition to fight, but I am not itchy or bleeding, and the spread has stopped. We may not know how our health may improve, but that doesn’t mean it won’t. We just have to keep fighting and looking for the right help. Improvement is often possible.
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Comments (6) -

John Boyle
6:10 AM on Friday, April 29, 2016

Great article on a great topic, Joanna.

Beth
1:39 PM on Friday, April 29, 2016

It appears to me that your magazine covers  the same or similar diagnoses repeatedly.  I have a primary immune deficiency, but that is not the disease to which I am referring.  I also have paraneoplastic syndrome,  stiff person syndrome,  Sjogren's Syndrome,  Anklyosying Spondylitis,  Multiple Sclerosis (even though I have this disease, it is covered repeatedly,  it is not nearly as serious as Paraneoplastic syndrome and stiff person syndrome),  neuropathy,  dysautonomia,  possible cancer associated retinopathy,   I have to get PET scans and see an oncologist every 6 months.  Paraneoplastic syndrome and stiff Person Syndrome are the most serious illnesses that I have and they are rarely, if ever,  talked about.   I have other illnesses that are probably the result of these two.  I live in constant pain, there is no cure for these conditions, most doctor's never see a case of these conditions in their career and many do not even know what they are.  

Delia
8:57 PM on Saturday, May 21, 2016

I really appreciated this article.  It was just what I needed in the face of having to change FP and having one of my specialists pass away.  I have been really in a "funk" trying to educate new practitioners about all my maladies (and not frighten them away).  

Joanna Tierno
8:56 AM on Friday, May 27, 2016

Beth,
Maybe you can write something about living with Paraneoplastic syndrome especially.. I have read an article  or 2 about stiff person syndrome but never Paraneoplastic syndrome.  I think its important for those of us with rare diseases to share our experiences.  You just never know who it will reach and and what point in their lives.   Besides reaching other patients I would like to think every now and then we can inspire some interest from the medical community as well.   Best of luck to you!  Sounds like you are living with a very unique combination of conditions and challenges..

Joanna Tierno
8:58 AM on Friday, May 27, 2016

Delia,
So glad this was of some help to you.  Best of luck with your new health care team.  I hope you will be happy with them!

Joanna Tierno
8:59 AM on Friday, May 27, 2016

Thank you John!

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