Fiercely Independent Pam

Author: Pamela

  • Is It Really Already May?

    I have been trying to get to MUSC for my AV Fistula because it’s looking and feeling kinda funky. There is a bulge that has never been there before and its “thrill” has gotten much more powerful. It was scheduled 2 weeks ago and got bumped off the OR schedule. Then I was scheduled for this past Thursday, and the surgeon wasn’t available, now I am scheduled for Monday morning. The procedure has to be done in the OR, but no cutting is taking place(supposedly). I am not feeling the best about this and not confident in a good outcome. Just my gut feeling.

    Then, there is the issue of the giant cell arteritis diagnosis- I have had symptoms since December when I was evaluated in the hospital but they decided to not do a biopsy because I was younger than the average age. When I saw my rheumatologist, he had the biopsy scheduled for the next day. The biopsy was negative, but my rheumatologist doesn’t trust the findings because so much time passed before having it done and during that time, I was on high dose decadron. So, I started infusion treatments and continued to take steroids. I still have the odd headaches around that area, so I am now going for an angiogram CT this week.

    Also up this week, but I might reschedule, is an appointment with the vestibular ENT at MUSC. He, besides being the genius who found my canal dehiscence and performed my craniotomy, is treating me for some intense ear pain caused by nerve issues. He is a wonderful doctor and always tells me straight on what is going on and what I need to do!

    For the most part, I am feeling pretty good these days. I feel that my strength has returned to my “normal” but I am still struggling with my balance. When I am able to hold on to something while walking, I am fine, but unassisted, I walk like I am drunk. My Zeen has been amazing and today I managed to walk a mile with it. Now I would like to build to walking the mile without breaks. Yesterday, I rode the NuStep bike for 25 minutes and gradually adding more time.

    My blood pressure is running super low again these days. I have gone back on medication to bring my blood pressure up to just above normal so that when it drops as I stand, it is still high enough to support me. I am struggling to maintain this after a large meal, since the blood pools more in my stomach for digestion. I have for multiple reasons, try to avoid heavy or larger meals as much as I can.

    Despite gaining and losing the same 5 pounds for the last month, I am closing in on the 100 pound mark of weight loss. I am very proud of myself for accomplishing this and hope it truly benefits my health. My biggest frustration is realizing I don’t have a lot of clothing to wear and that I have to go through my drawers and closets to remove bigger sizes.

    In non-health news, I continue to keep myself busy here in the community. I create and distribute a monthly newsletter that includes previews of upcoming events, tips/tricks, pictures of previous events, and more! The residents seem to really enjoy receiving it each month. I am still offering technology help. I absolutely love doing this and have helped residents do everything from make their first phone call with a cell phone to learning how to play their favorite game on their tablet. I get paid in all sorts of ways including M&M’s!

    Things are progressing well on the service dog front as well. The biggest update to share is that the next 2 steps will take place on June 10th. Folks from the client applicant committee of PAALS will be visiting me to see my apartment and the facility as a whole. The other step is considered a community assessment and for that I get to interact with one of the wonderful dogs in training at the grocery store! Both parts of this visit will be exciting! Hopefully, all will go well and I can officially become a client. This would then start my fundraising process to cover the expenses of Team Training. The process is long and requires patience, but I am beyond happy giving the time knowing that something amazing will come from it.

    May is a great month- always busy, always wonderful! I get to celebrate my birthday again and the weather never disappoints. With a prayer, some hard work, and patience, I will see the fruits of my labor and trust.

  • Yes, I Have Anxieties and I Know How to Stop Them!

    A plant and hand holding a piece of paper that reads, "Never let your fear decide your fate."

    I found this image on social media and realized I do this all the time. My fears or anxieties win all too often. I am so busy processing the “what ifs” that I never process the actual events and facts. Take today’s drama- my wheelchair is out of commission still and requires over $1000 in parts alone. I, fairly quickly had myself out on the street because I was paying for my wheelchair repairs and would not have enough to make rent. I get “revved” up and just can’t stop the what if thoughts and negative consequences.

    It is definitely true that my anxieties have anxieties. Sometimes I dive down a rabbit hole so deep that I lose connection with almost anything that makes sense. I have gotten so much better about this in recent years, through recognizing early symptoms and practicing grounding techniques such as breathing exercises, prayer, meditation, and most importantly- fact checking. It is NOT a fact that I will be on the street tomorrow!

    Anxiety is a strange force. It sometimes comes out of nowhere and throws you far off your goal. For me, it is the truest example of devilish behavior. The only way I have learned to defeat this behavior is to confront it with my faith. I need to believe in myself, those that love me, and most importantly to my God.

    My Catholic faith has taught me that God will overcome any worries and tribulations. My faith tradition has also taught me some very helpful actions. I have learned to “work my rosary beads” to ground myself. I have a special devotion to Mary Undoer of Knots. The very image of our Mother undoing our anxieties and stressors of life provides so much comfort.

    I am a believer that you should seek help from all areas of life when faced with troubles. I utilize medications to help me get out of the rabbit holes I find myself in all too often. I do not see this as a crutch or the easy way out. I see the medication as a tool, just like my rosary or even the dance party I have privately in my apartment.

    I have learned that it is important to name behaviors as a result of anxiety. You do not have to be ashamed of having these behaviors, it is a force working against you and with time, practice, and faith, you can overcome the force.

    When I made a change in my life a few years ago, I adopted the mantra- “Don’t let the hard days win!” This includes tackling the anxiety monster, the over-thinking, and finding ways out of all the rabbit holes. Utilize the tools you practiced with, pray for help, and remember to check the facts.

  • Medical Appointments: Keeping Them Organized and Finding Ways to Get There!

    I average 5-12 medical appointments a week. This includes home health nursing, tele-healths, traditional appointments with specialists, and therapy appointments. It’s a big time commitment to attend all of these appointments as well as keeping them all organized.

    To stay organized, I use the calendar on the phone/computer as well as a google docs file that includes any appointments outside of my apartment. The file contains the date/time, provider’s name, address, phone number, as well as a place for transportation notes. I find this file so necessary, as sometimes I need to print or send a copy of upcoming appointments to various providers. I have even started to color code some items on the sheet. The bonus of having it as a google doc is that I am able to share it with various people (family) and they can see any changes or updates.

    Transportation is the biggest issue for me to get to appointments. I try to make local appointments on Tuesday or Thursday when the bus is available through my community for appointments. MUSC appointments require the most resources as I need to coordinate them with either my niece, private transportation company, or using UBER. All are expensive options. All of this also requires me to determine what mobility device I am going to use. If I wake up to go to MUSC with my rollator and feel terrible, I am stuck and can’t switch to my power wheelchair. It’s a lot of thoughts.

    Transportation is a huge hindrance to many people’s access to heath care. If you can’t leave your house, you are significantly limited to the type of health care or quality of health care you receive. Likewise, when you are limited by milage or transportation routes, you become limited.

    I am eager to see my Medicaid application be approved and provide needed support for transportation as well as other things. This process for application was very extensive and difficult. I am hopeful that the results will be worth it!