Fiercely Independent Pam

Category: Health

  • 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.

  • Financial Woes: Being Disabled is Expensive

    Having a small “pity party” for myself. I’ll get over it before I even publish this post, but like anything else, I know the best thing I can do is get these feelings out. A year ago, I was faced smack in the face with one of the biggest surprises of my life. I was being “tossed out” of my community. On paper this was due to my medical needs being more than they could meet, however I was not asking them to meet them. The actuality was that I was too aware of their missteps and failures for myself and other residents. In hindsight, the move to my current community was the best thing that could have ever happened to me! The process of moving and settling in was quick and somewhat painless, but it came at a cost- a financial cost that I never quite recovered from.

    Fast forward to today and I continue to struggle to stretch my social security payment as much as possible. I do not qualify for any extra help, because ironically I worked so much, my social security payment is just over the poverty line to be able to qualify for additional services. I never thought I would be here and after all, I have a Master’s degree in a needed field and loved working. I worked hard to pay off my student loans that were minimal because I made good choices about tuition and earned amazing scholarships.I am a good example for anyone who believes you just have to try harder and if you are struggling financially, it ,must be your fault. This is simply not true.

    I am confident that through my hustles and creativity, I will find solutions. after all that’s what it means to be fiercely independent! The medical bills, caregiver support, transportation, and unexpected expenses pile up quickly. This doesn’t even include the financial burdens of “wish list” items like mobility devices or other products not covered by insurance.

    I am not here to beg for money or anything like that, just to bring awareness that services for our vulnerable populations needs to be protected. I am not making a political statement at all, just remember that the disabled population is the only group that anyone can join at any time in their life. You never know what curve balls life will throw at you. We are all one accident, one healthcare scare, or aging into becoming disabled. Disability brings a whole new financial challenges I was not prepared for in the least.

    So, what is the solution? For me, it’s a matter of keep hustling. I am determined to meet my financial needs through lots of means. Sponsors, bartering, and even begging are not beneath me at this point. I realize I am lucky, I have a lot of skills to bring to the table and most of the time, I am able to muster up the energy to use them. There are far many more disabled people who aren’t able to do this to the same extent. We all have to rely on our “tribe” the friends and family who meet us where we are despite our difficulties.

  • Fifty Pounds Gone: My Journey of Weight Loss (This Time)!

    I’ve always struggled with my weight. I honestly do not remember a time that I wasn’t overweight, except a brief time that I worked hard to lose a lot of weight and quickly gained it back. I have always lived by the idea that it was better the maintain than to yo-yo back and forth and feel trapped by my weight.

    Fast forward to the last five plus years of chronic high dose steroids, diabetes, and a slew of health issues, my weight ballooned to a ridiculously new high. For the first time, I felt uncomfortable in my own body, my weight impacted everything and definitely did not help my health issues.

    Unlike the last time I made a major effort to lose weight(about 15 years ago), I didn’t seek out a program or system to follow. I was lucky, something found me. My orthopedic’s office signed me up for something called Prescribe FIT. This is a 1-1 program where I was matched with a health coach and complete virtual visits weekly. They also sent me a bluetooth scale that links directly to their incredible app.

    I use the app daily to weigh in, report on goals set, and can even enter water and nutrition daily. My weekly virtual visits with Anna are great, we check in on weekly goals, struggles, and brainstorm new approaches. It’s a good balance between self-sufficiency and ongoing support.

    Today, I reached just past the fifty pound mark and losing 20% of my starting weight in early May! I am also about eighty pounds down from my max, a little over a year ago. I am quickly looking forward to my next short-term goal of being “just” overweight and not obese. I am struggling to find clothes that aren’t too big and that feels wonderful! For the first time in a very long time, I am wearing “regular” sized clothes and not plus sized. Other people are noticing and that too is a great feeling.

    I will continue doing what I am doing, I think i’ve found my stride in this journey. I appreciate the support from Prescribe FIT, my health coach, Anna, my healthcare team, my family/friends, and everyone who is helping cheer me on along the way!