Fiercely Independent Pam

Tag: stupid bladder

  • 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.

  • Having a Tribe:Family, Friends, and Staff, Oh My!

    Well, I am back inside- not the big house but the hospital-Again! My blood pressure, which usually runs low is through the roof, I called an ambulance when it reached 250/100. Nothing cardiac going on, but still not able to figure out what is causing the high BP and chest pain. In the meantime, I was pulled off all my meds that could raise my blood pressure, mainly my steroids that I take for adrenal insufficiency. Being off of them is making me feel pretty crappy. That coupled with needing a foley catheter again and continued pain, has me searching for some positives.

    I found hope in a great place- mainly what I am now describing as my “Tribe.” These are the people who together we help each other out and just make things happen. I could not survive without my tribe. My new friends at my community who, despite their own disabilities come visit me with cookies in hand and are available to hear me vent without judgement. My tribe includes the caregivers and employees at my community who do amazing things like look after my plants, or bring me the medications I didn’t bring with me.

    They are all there for me and I just hope that I am always there for them as well. I guess my biggest piece of advice on finding your tribe is to be open to help from anyone and everyone who is willing, you never know who is actually going to be there for you. Likewise, you need to show up for your tribe, be a friend, and most importantly listen to them!

    It is equally important to consider and recognize those that are NOT in your tribe. Those that gaslight you into thinking that your symptoms aren’t real or blame you for your conditions and even those that try to offer advice sometimes. This is a hard pill to swallow as sometimes those that you have to recognize as not part of your tribe are the people you desperately want to be your biggest cheerleaders. People’s lives are busy and we need to recognize that. Often, just like not blaming a person for their chronic illness, we need to respect that life is messy and we cannot blame people for not being part of our tribe.

    The bottom line is that it still hurts when someone can’t be there for you, or when you can’t be there for them. Relationships are messy and just because someone can’t be part of your tribe, doesn’t mean that you can’t like/love them. Our tribes change almost day by day, but relationships with friends and family always remain.

    I am so thankful for my past tribes, and in a really special way, my current tribe. I hope and pray that I am a member of standing in other people’s tribe by giving and showing up for them. A cookie in hand goes a long way.

  • I’d Like to Get off this Ride, Please!

    Well, here I am… again- in the hospital trying to figure things out. Fourth admission in the last 45 days. This one was unique- was feeling pretty crappy all of the sudden, high heart rate, super high blood pressure, and a crazy bloody nose. Had the medical assistant in the building come see me and we called my primary. Decided to call ems and take a ride to the local stand-alone ER.

    Doctor came in and did his quick assessment, ordered some bloodwork and tried to stop the nosebleed. Lots transpired including a ct to rule out blood clots some packing in my nose and eventually stronger antibiotics, fluids, and some pain medicine. A plan was devised to go home with close follow-up at the urologist the next day (already scheduled) and a quick pick up of the stronger antibiotic. As my luck goes, as the dr was typing my discharge papers, my medical record was flagged with a new result- preliminary results of the urine cultures from my past admission two days ago. The results were not good a
    “superbug” of sorts that required iv antibiotics and triggered a sepsis alert. Obviously this meant an admission. Being that I was at a stand-alone ER, I had to be transferred to the hospital.

    Without being super specific and reliving everything, a series of promises were made to me about the level of medicine that they could offer; this was not true and extremely frustrating. Given it was nighttime in the hospital, I knew I wasn’t going to get very far. Morning came and we were moving and shaking, even a transfer to MUSC was in the works. As quickly as things were happening was as fast as they were falling apart, my goal was to have a great visit with my amazing friend who brought me more things from my apartment, and then to sleep well, hopefully with the bipap. I did manage some good sleep in between the interruptions and woke feeling pretty good, considering.

    MUSC was not accepting transfers because they didn’t have any available beds, so I decided to make the most of the situation and practice my advocacy skills. Then the news came, MRSA detected in the bloodstream (blood cultures started to result), new additional antibiotic, and close monitoring of vital signs and blood work. I’ve been down this route many times with sepsis- always scary, never fun, do not recommend!

    After a great visit from an area priest who anointed me and then came back with Communion (so thankful!) and some good phone calls to family/friends, I had a decent sleep (thank goodness!) and woke up ready to see what the day would bring. Another new Dr., she thinks that the MRSA found in the last round of blood cultures was a contamination, not a real result and ordered more blood cultures and discontinued the 2nd antibiotic (GRR!) Now it’s a waiting game to see what will grow with the newest cultures.

    At the same time, I continue to battle with my bladder. I’m now going on my third week with a foley catheter in. Dealing with continued pain, pressure, and now bladder spasms. The plan is to leave the catheter in until the UTI clears and then try a voiding trial. The hope is that I can both void and full empty, otherwise its on to plan b- lots of things have been discussed, none of which pleases me in the least. Then there is the issue of the large kidney stone that needs to be addressed, but that needs to be done as an outpatient apparently.

    Whew! Besides the obvious of trying to make the best of this pretty crappy situation, it important to recognize the importance of trusting your “gut.” I unfortunately am rarely wrong when I think something is wrong with my body- many would have brushed off my initial symptoms that brought me to the ER, but I pushed through to the doctors that “something wasn’t right!”

    Still have this feeling that I will come out ok on the other end, but something still isn’t right. Infection isn’t clearing as well as I’d like and I have a bad feeling about this bladder stuff. For now, I will visit with anyone and everyone who I can, in person or on the phone, do some writing, brought some crocheting with me, and getting some good earned sleep.

    Tomorrow is Monday, which means things will be moving and shaking again after a quiet, empty weekend. Hopefully something, not too scary will grow on my cultures and I can start planning to go home to fully recover. I am bummed that I had to cancel a few things that I was really looking forward to and hope my visit from a dear friend isn’t too impacted.