Fiercely Independent Pam

Tag: Primary Immune Deficiency (PI)

  • IVIG, Home Health, and Trying to Control Timing!

    Today is my twice a month IVIG infusion. IVIG is used for many different reasons; I use it for my immune system (or lack there of). I have been doing IVIG for about three and a half years. Before this, I used to do my IGG via subq which didn’t involve using a central line or needing a nurse to monitor. Click here for a previous post that explains my Primary Immunodeficiency and treatment plan. All of this involves special planning and timing.

    Today again, I have a substitute nurse, actually I have two nurses because one is shadowing the other. It’s always interesting because nurses have their own ways of doing things. Nothing is wrong or right, just different. I also spent a good part of the morning working and practicing using my fistula.

    Timing is aways something on my mind. I want to keep moving forward, but it is essential that I remember that I do not control time, I have been waiting to use the fistula and get rid of my PICC line for over a full year. Today was another day of being reminded that I do not control time. The plan shifted some, but is still moving forward. I practiced sticking a fake arm and using good technique to secure and then remove the needle. I think I am still on track to have the PICC line pulled around Christmas, which is a BIG deal because it means I can finally break free from using Home Health services.

    Right now, because I have a PICC line and require nursing services from Home Health, I am limited in regard to other things. For example, since I use Home Heath, I am required to use them for PT/OT services, which tend to be not as robust as outpatient services. I also can’t order my urinary catheters through “normal” means because Home Health has to order them. This limits the type of catheters I can use and try. I am eager to stop using Home Health so that I can access other services.

    It’s easy to get frustrated with the timing of things. I want things to work out NOW! I am tired of waiting! Beyond getting rid of Home Heath, getting rid of the PICC line also means being able to shower without a cover on my arm and being able to swim if I want to. I have purchased stickers for my glucose monitor for various holidays that I’m not using because they would be hidden under my PICC sleeve. It might seems like I am whining right now but really I know timing is not in my control. Eventually the PICC line will come out and eventually I’ll meet these goals.

  • I hate being sick…

    I found this quote (pasted below) and realized it said so much of what I feel on a regular basis. Those, thankfully rare moments that I really consider where I am in life. Having chronic illnesses means always finding a balance between obsessing about getting better and pretending your life is normal or in other words, embracing the reality versus ignoring the facts. Most of the time this is for self preservation; nobody, including myself wants to hear about the struggles all the time. I often tell people that my full-time job is taking care of my health and that isn’t really a joke.

    When you couple chronic illness with invisible illness, and add in rare diseases into the mix, you are faced with a ongoing problem of being believed, but almost anyone, after all no one should or could have all of this. My list is crazy(simpliefied): Primary Immune Deficiency, Asthma/COPD, IIH, RA, POTS, Adrenal Insufficiency, Type 2 Diabetes, Hashimoto’s Disease, Migraines, anemia, SVT, pituitary tumor, kidney stones, urinary issues, back/neck/hip arthritis, endometriosis/ovarian cysts(now a non-issue due to recent hysterectomy), severe allergies, history of PE and DVT and depression/anxiety. I am always aware and thankful for the other scary stuff that I have been diagnosed with and then proven otherwise like MS and Myasthenia gravis. I am well over 50+ surgeries and have been plagued with orthopedic issues from a bad car accident and stupid bad luck, along with years of playing sports. My medication list is ridiculous and it gets slapped with “Poly-pharmacy” all the time, something that the good providers see as a potential problem but not sure how to handle it. I swallow pills and give myself injections like its my job!

    I write this today, not for pity or attention, but mostly for my own good and hopefully someone else will feel less alone in their own medical journey. I do not expect my family, friends, or my “tribe” to fully comprehend all of this, as I barely do. I do hope that those who surround me with love give me grace to be imperfect sometimes. In turn, I vow to keep fighting and giving myself this same grace. I will continue to “Not let the hard days win” as I have won !00% of my battles against bad days! I will continue to search for new treatments and support, my biggest adventure in this area is attempting to get a service dog for mobility, assistance, medical alert, and of course companionship; all of this would be a total game- changer.

  • Get Well Soon?

    “You have such a good attitude” or “You aways are positive,” etc. I am a big believer in faking it until you make it! I am not always feeling positive or feel like smiling, but it’s so much easier to fake feeling good than to own up to feeling lousy. Nobody wants to be around someone who is feeling lousy or cranky. I like to be around people and not alone, therefore it’s in my best interest to try to stay positive and smile through the chaos. I’ve tried the “pity parties” and they frankly are not fun. I do believe its important to reflect and acknowledge how much is going on, but then its time to move on.

    Chronic illness is no joke- the stress of realizing you are never going to get better is exhausting. And explaining that to others is such a hard thing to do. Everyone wants to say “feel better soon” or You’ll be back to your old self soon.” This is just not true and sometimes it’s just not worth the energy to correct people, even close friends or family. So what do you say? How do you tell those around you that something else is wrong?

    Then there is the never ending suggestions of everything from yoga (which I love, but isn’t going to fix me), oils, diets, and everything in between. I’ve spent more money than I chose to say on various fixes, only to be disappointed. I love you, and I promise I am doing everything I can to feel better, but your latest google searches or ideas aren’t super helpful all the time.

    What can you do to help? Listen to me, ask me what I might need, stop by unannounced, distract me with your wonderful news, support my decisions, pretend everything is ok, and most importantly, try not to ignore or hide out from me. I know I am A LOT- I promise, I would change if I could.