Margie Jensen | CaringBridge

Margie Jensen

Hello.  My name is Margie Jensen and I'm a senior citizen although I don't feel like it.  I've had a variety of problems mostly stemming from (secondary to) my immune deficiency (specifically Common Variable Immune Deficiency (CVID)) which makes me more prone to infections and autoimmune problems.   I've had it all my life but I wasn't diagnosed until I was 38 and I didn't start receiving treatment until I was 42.  One problem has been severe sinus infections requiring 4 major surgeries, countless minor ones and WAY too many antibiotics.  I give myself gamma globulin (HyQvia) once a month to replace some of the missing immunoglobulins - it helps quite a bit.
       I have something resembling rheumatoid and osteoarthritis which has caused me to have both hips and my right knee replaced.  I also had to have a disk removed from my back and currently have pretty major SI joint problems which make everything other than sitting or lying down quite painful.
      I had a failed dental procedure during which my mandibular nerve was cut and I got a bone infection.    The infection caused my jawbone to break (pathological fracture) and require a bone graft as well as a couple of other surgeries.  The mandibular nerve cut caused me to get a pain disorder called Reflex Sympathetic Dystrophy or Complex Regional Pain Syndrome (RSD or CRPS) for which I take strong pain medicine.   Anything that touches that part of my face or the inside my mouth burns like a flat iron is touching it.   The longer I sit or stand up (or am under a lot of stress) causes the affected parts of my face to burn and throb.  RSD  can spread such as the opposite limb will mirror the problem experienced in the first limb.  And, unfortunately, my last sinus surgery left the other side of my face very painful because the scar tissue wrapped around the nerves.   The area from my lip to my lower eyelid now burns and throbs  just like the other side of my face.   The sinus and the whole area is also very sensitive to cold or pressure.  Washing my sinuses, like I'm supposed to do to reduce infections, has become pretty excruciating.   Additionally, the bone infection never completely healed  and, as a result, I've developed significant gum disease on that side of my mouth.  The oral surgeon only restored one molar on the bottom left after all the jaw surgeries (an implant as are most of my bottom teeth) to reduce the possibility of anything activating the infection. Now, even though the implant is extra long, I'm at risk of losing it because of the gum problems.
     I must add, however, that I'm much less impacted than many people with CVID.  I don't get septic when I get infections.  I had some digestive issues but taking pain medication actually helped this since I no longer have chronic diarrhea,  (My son would tell you, though, that it ruined several vacations).  The digestive issues while annoying were much less serious than a lot of patients.  I am also mildly bipolar (atypical bipolar disorder II).  I don't know if this is related to my immune deficiency but I kind of suspect it is since my moods always swing around when I'm sick.  Fortunately for me, Zoloft controls the symptoms pretty well and I'm really grateful that I don't have to take something stronger because I'm already on too many really strong medications.
   All in all, I had a really interesting career first as a musician and then as a software developer.  I now make jewelry and quilts and would like to have a website put together soon.   My health problems have impacted my life but they certainly did not ruin it.  I've met some really interesting doctors and patients who I never would have met otherwise.  As I get older I tire more easily than I would like but I have a good marriage and a wonderful son and daughter-in-law who just had a new baby boy after trying for 10-15 years!  They live a long ways away but I can't wait to meet the little man next month!


   

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