Fiercely Independent Pam

Tag: Primary Immune Deficiency (PI)

  • 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.

  • 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 an 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- priliminary 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 please 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 full 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.