Medical/Life Update

When I started this site I had all intentions of it becoming an easier way for me to keep others up to date and an easier way for me to express myself. But chronic illnesss has other ideas and the last few months have made that rather complicated. I don’t even know how many half written blog posts I have started at this point that brain fog has made impossible to finish. It’s got to be at least ten. Hopefully eventually I’ll actually get them finished and posted and be able to form my thoughts without as much of a struggle.

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The last few months have been quite the battle. Kyle and I finally got to take our trip to Tennessee (YAY) and it was beautiful and wonderful and also very exhausting. But I managed to pick up a fungal lung infection while we were there which in a person with a normal working immune system wouldn’t have been an issue but thanks to my primary immunodeficiency it wreaked a lot of havoc and has left some permanent damage on my right lung. I’ve also been able to start my IVIG (intravenous immunoglobulin infusions) again at a lower dose than before but biweekly instead of monthly and finally at home. The hope with these frequent lower doses was that it would decrease my severe side effects and hopefully help me avoid the 10 day migraine and recurrent bouts of IVIG induced aseptic meningitis. I can’t say that’s been working very well. I’ve now had four of these smaller infusions and still suffered pretty severe migraines, aseptic meningitis, along with recurrent/never ending respiratory infections. It seems that about the time the side effects wear off it’s already time for the next infusion.

I’m not giving up on this plan yet though and I’m hoping it’s simply taking a little more time for my body to adjust. Some adjustments in the amount of immunoglobulin I’m receiving may need to happen as well to help fight infections but I have a very good home infusion nurse who makes the 6 hour infusion every other week go by pretty quickly. All these side effects have meant I’ve spent much of February and March sleeping and snuggling with Add. I know I’ve been awful at keeping in touch but most days conversations are simply exhausting and my brain fog makes me feel like I can never quite find the words I’m looking for and makes me rather forgetful. Between the infections, infusions, new allergic reactions, severe neck pain, fainting from my POTS, gastroparesis flare and pain, I’ve been pretty cranky and probably not much fun to be around most days (Sorry Kyle). But I meet with a new gastroenterologist next week who specializes in gut motility disorders and has worked with my motility specialist at Hopkins so I’m hopeful she will be helpful and a much needed member to add to my team of local specialists. I’ll be starting Botox injections for my migraines soon which will hopefully lessen the post IVIG migraines as well and physical therapy to help correct the damage I have done to my shoulders, upper back and neck from frequent shoulder dislocations and injuries sustained during fainting spells. I’ve also got an exploratory abdominal surgery and  endometriosis excision surgery scheduled for May 9th. So we are making progress.

And it’s all not been bad! My little sister Jestine and her boyfriend Bubba came to visit again over their spring break which is always fun! My wonderful mother in law, Marcell, has been down multiple times to take me to appointments when Kyle has to work and also rushed down to spend the day in the ER with me in February when the fungal lung infection worsened. I have no idea what we’d do without her and I’m so glad that we’re able to have fun and laugh together even in the worst of situations. (Apparently that runs in the family) haha Addie,Mia and Pippi have been their adorable silly selves full of entertainment. We celebrated Pip and Mia’s first birthday just last week complete with tiny party hats and tiny donuts. Addie has still been under the care of our veterinarian about her partial CCL tear but with her severe congenital hip dysplasia the CCL repair could do more harm than good so she’s been started on supplements and a special diet and currently is showing no signs of pain or a limp. This does mean she’s not able to do any mobility assistance task for me now but she’s still able to alert me so she’s a happy pup. Kyle and I took an adventure to IKEA which was my first time there and I totally understand why people are so obsessed with it! Kyle has continued to be incredibly supportive and dealt with my grumpiness very well along with managing the increase in IV medications since my home IVIG infusions have started. My home health nurse actually refers to him as Nurse Kyle because he’s able to take care of my line and me and the crazy amounts of medications without any trouble. As I’ve lost safe foods recently we’ve been able to find many new ones I can have. Or more Kyle has found ways to make my favorite foods possible despite my restrictions and I’ve been able to find products that make that all easier. Recently I found gluten free corn free crackers that taste exactly like Cheezits as well as ones that taste like Saltines! They are much healthier versions though packed with protein. I basically survive by snacking all through the day so having these easy products for me to grab is amazing! Currently I’m living in survival mode and any good day or even good part of a day I’ve been having I’ve been putting all that energy into time with Kyle, Addie, Pip and Mia since it’s so far between. Thank you for all the prayers, thoughts, phone calls and text messages that have been sent our way and I’m sorry I haven’t been able to really respond. 

Here’s a slideshow of Mia & Pip’s adorable 1st birthday party complete with tiny donuts! 

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  • I did add a new page to the site called About my Conditions with links for those who wanted more information. So if that’s you, check it out!

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